Issues & Advocacy

Important Action Alert!

2011-03-24T17:17:00.001-04:00

Word in Albany is that a budget deal may be decided by tomorrow. We've been pressing the Legislature and Executive nonstop on our priority issues. We already got a huge victory with the State's commitment to implement the Community First Choice option! With one day left, let's do one last push to protect home and community based supports and services.

· Call the Governor at 518-474-8390 and leave the following message:

"The disability rights community put $90 million annual Medicaid savings on the table through the Community First Choice option, so we urge you to protect essential community based programs that keep people out of costly institutions by exempting CDPAP and the NHTD and TBI waivers from the 2% across the board cuts."

· Call the two health committee chairs with the same message and add our message about protecting the personal care program! Call Senator Hannon at 518-455-2200 and Assemblyman Gottfried at 518-455-4941, and leave the following message:

"The disability rights community put $90 million annual Medicaid savings on the table through the Community First Choice option, so we urge you to protect essential community based programs that keep people out of costly institutions by exempting CDPAP and NHTD and TBI waivers from the 2% across the board cuts and removing the unfettered administrative controls on the personal care program.

Gov. Pledges to Implement the Community First Choice Program

2011-03-18T15:39:00.002-04:00

Great news ... the Governor has committed to supporting home care, including Consumer Directed Personal Assistance. Read the linked Press Release for more details.

Home Care Protest in Albany - 3/15/11

2011-03-17T18:18:00.001-04:00

Video from our visit to the State Capitol in Albany ...

Important Action Alert! Medicaid Redesign Proposals Risk the Independence of People with Disabilities

2011-03-14T19:24:00.001-04:00

Issue: Support Disability Advocates in Albany - Urge your legislators to Defend Our Freedom!

Action: Click on "TAKE ACTION" and send a message to your representatives to ensure they are aware of your concerns in the 2011-12 State budget using the message below. Feel free to edit the message and make it more personal by including stories as to how some of the proposals would affect you and / or the people you serve.

Please distribute this alert far and wide to ensure a large volume of messages while we are in Albany!

TAKE ACTION!

Background: Over 250 people with disabilities and attendants are rallying in Albany on Tuesday, March 15, to DEFEND OUR FREEDOM! The disability rights community is united in the face of harmful proposals and cuts to the services and supports needed to maintain our independence in the community.

We are urging our legislators to make a commitment to implement the Community First Choice (CFC) Option available in the Affordable Care Act and carve out the Consumer Directed Personal Assistance Program (CDPAP) from being placed in Medicaid Managed Long Term Care (MLTC).

People with disabilities who use home care depend on the stability of those services for their day to day independence. Even small cuts or caps in service, changes in how programs are managed, addition of co-payments, or other limitations can tip the delicate balance and force people into nursing homes and other institutions ... which in the end are more costly to Medicaid.

We believe the State must ensure that the right to receive services in the most integrated setting is not threatened by enrollment in Medicaid Managed Long Term Care. The State should also advance affordable, accessible, integrated housing and should publicly commit to steps for substantive involvement of people with disabilities and disability rights advocates in the planning process for implementing all the recommendations of the Medicaid Redesign Team, including Managed Long Term Care.

Supporting and promoting greater independence is the right way to control Medicaid Long Term Care costs, not arbitrary caps.

Medicaid Reform in NYS

2011-02-11T10:40:00.002-05:00

In his State of the State address on January 7th, Governor Andrew Cuomo called for a redesign of the Medicaid program. The goal of Medicaid redesign is to cut the cost of the program which is the most expensive in the nation. The governor stated that he also wanted to see the program have better overall outcomes. In essence, he wants a better program for less money. To accomplish this goal, Gov. Cuomo is using a model that was successfully used in Wisconsin. The plan relies on all the various stakeholders involved with Medicaid to work together to draft a reform plan that meets specific benchmarks set by the Executive Budget. It is pretty obvious that the Governor hopes to build a consensus plan that will both meet the needs of true reform while maintaining a level of services that adequately meets the needs of Medicaid recipients.

On January 9th the Governor named the members of the Medicaid Redesign Team and soon after a website went live located here. The team is made up of representatives from the state legislature and state agencies such as the Department of Health which is on point for the project, representatives of healthcare industries such as hospitals and insurance companies, and representatives from healthcare unions, and consumer organizations. The team has already begun holding meetings and a number of regional forums are being held across the state in order to seek advice from the public. Oral and public testimony is being solicited from the public. We urge everyone to make their voice heard by providing comments and testimony on the aforementioned website.

Obviously the disability community is very involved in this process. The New York Association of Independent Living (of which NCCI is a member) and the Center for Disability Rights have produced a very thorough brief that makes substantive proposals for Medicaid redesign, supported by hard data. We encourage people who want to provide comments to the Redesign Team, feel free to use this paper to frame your arguments. The main points of the recommendations are as follows:

• Increase utilization of the Nursing Home Transition and Diversion Medicaid Waiver to transition people from nursing facilities to community living.

• Establish an expedited enrollment process for the Nursing Home Transition and Diversion Waiver and the Traumatic Brain Injury Waiver in order to divert placement in nursing facilities.

• Implement the Community First Choice Option and shift people from the traditional Personal Care Program (PCA) into the Community First Choice state plan program.

• Where possible, shift recipients of Certified Home Health Programs into the Consumer Directed Personal Assistance Program (CDPAP).

• Expand the pool of direct care workers in the Consumer Directed Personal Assistance Program (CDPAP) to match the federal rules for paid family caregivers, which would promote use of the program.

• Better utilize assistive technology to reduce personal care spending.

For more details about each of these points along with detailed supporting data please click here to see the NYAIL/CDR Recommendations. Keep in mind that there are multiple goals in the above proposals; fully implement the Olmstead Supreme Court decision of 1999 that ordered states to move from segregated institutional placements to integrated community living placements, keep services intact, and cut costs to Medicaid. This is a tall order but as the data bears out, the above proposals would help accomplish these goals.

2010-08-24T14:00:00.002-04:00

This acttion alert comes to us from the Center For Disability Rights (CDR) in Rochester and is not an official Statewide Systems Advocacy Network (SSAN) alert. CDR is an outstanding center for Independence and their efforts on behalf of all New Yorkers with disabilities has been both valiant and powerfull. CDR deserves our support and the issue they are fighting for has implications for CDPAP throughout the state. So if you want to help out, please follow the link below after reading the summary from CDR.
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Disability Rights Under Attack: FIGHT BACK! Take Action!

Help the Center for Disability Rights Fight Back Against the Vicious Attack of Monroe County

On July 22, 2010, without any notice, Monroe County abruptly ended a long-standing contract with the Center for Disability Rights to provide services in the Consumer Directed Personal Assistance Program, impacting nearly 300 consumers and over 700 attendants. Surplus from this program has been reinvested into services and advocacy for people with disabilities in Rochester, around New York State and even nationally.

Local advocates didn't just accept this decision. On July 26th, the battle began in the streets as consumers, attendants, staff and supporters of disability rights began a round-the clock vigil in front of the Monroe County Office Building. The battle continued in the media – where CDR produced concrete documentation that the County’s accusations are false and consumers themselves defended CDR. The battle has been fought in the courts – which resulted in an extension for consumers.

Now, we need the NYS Department of Health to step in. The Department of Health is ultimately responsible for the state's Medicaid program and has jurisdiction over Monroe County. TAKE ACTION and send letters to the Department of Health and Governor's Office reminding the them of the state's responsibilities and urging them to intercede in this unjust attack.

Click this link to send a message to the Department of Health: http://capwiz.com/rochestercdr/issues/alert/?alertid=16120051&queueid=[capwiz:queue_id]

People with Disabilities and Voting

2010-08-04T18:40:00.001-04:00

Mixed results from a study on participation of voters with disabilities:

20 years of ADA celebrated by disability rights advocates ... Voter turnout increases but barriers remain.

From the July 29, 2010 edition of "electiononline.org", produced by The Pew Center for the States.

20th Anniversary of the ADA

2010-08-01T21:39:00.003-04:00

This July 26th was the 20th Anniversary of the Americans with Disabilities Act, the broadest, most comprehensive federal law protecting the rights of people with disabilities throughout the United States. Here are some events and Internet resources related to the anniversary:

ADA Celebration with the Candidates

Location: Trinity Park in Downtown Plattsburgh
Date: August 14, 2010
Time: 11:00 AM - 4:00 PM

The North Country Center for Independence invites you to a celebration of the 20th Anniversary of the Americans with Disabilities Act (ADA). The goal of this community event is to increase the awareness and participation of people with disabilities in the political process. To this end, we have invited candidates for public office this year to discuss their ideas for how the vision of the ADA can be fulfilled and increased through the offices they are seeking. We have asked candidates for local, state, and national office representing our area to address such issues as:

Community accessibility
Voter accessibility
Long-term care in the community for seniors and people with disabilities
Access to transportation
Education for children with disabilities

This event will also include a voter registration drive and recruitment for the New York Statewide Systems Advocacy Network.

The North Country Center for Independence is non-partisan and candidates from all political affiliations who will appear on the ballot in Clinton County in November 2010 are invited to participate.

ADA Workshops for Businesses and Organizations

September 14, 2010 - 10:00 AM to 12:00 PM - Getting Hired and Moving Ahead In A Job When Working with a Disability

September 22, 2010 - 8:30 AM to 4:00 PM - A New Horizon for Businesses and Organizations

October 19, 2010 - 10:00 AM to 12:00 PM - Disability Awareness: Communicating Respectively and Effectively with People with Disabilities

November 15, 2010 - 10:00 AM to 12:00 PM - Tapping Into Talent: Best Practices in Hiring, Retaining and Accommodating People with Disabilities

December 7, 2010 - 10:00 AM to 12:00 PM - Serving Customers with Disabilities: Reaching Out and Expanding Your Market

All workshops will be held at The Plattsburgh & North Country Chamber of Commerce, 7061 State Route 9 Plattsburgh, NY 12901. For more information and to register, contact Norman Karp, Community Work Incentives Coordinator & ADA Trainer at 518-891-2108.

ADA Anniversary coverage on the Internet:

Whitehouse Observance of the ADA Anniversary

John Hockenberry on Twenty Years of the Americans with Disabilities Act:

Audio Program

Blog Post

Press-Republican - In My Opinion.

Advocacy Techniques: How to Impact State Government

2010-07-26T14:07:00.002-04:00

The following advocacy techniques for affecting government policy are based off of a training provided by Barbara Bartoletti, legislative director of the New York State League of Women Voters.

1. Know who you are talking to. Whether you are meeting with a state legislator, county official, or Congressional representative, be sure to do some research before attending. You should study their voting record and have a good idea of how they tend to vote on the issues you are bringing to them. You should also be knowledgeable about the committees they serve on and what issues tend to be of particular interest to them.
2. Organize. Now that you have done the research its time to develop a strategy for the meeting. Set goals and prioritize your issues. Keep in mind that legislators are very busy and you are likely to be limited to around 15 minutes, so you want to make the most of your time. Assess the skills of each of your group members and assign roles. One person should be the spokesperson, though this can be a different person for each issue. Someone should also be assigned the role of note taker and listener.
3. Stay Focused. As stated above, your time is limited, don't let yourself or your team be drawn into discussions that don't relate to your issues and goals. Your legislators will often ask questions or make comments about places and people you have in common, be polite and give appropriate responses but make them short and steer the conversation back to your issues. This should be discussed in the organization phase as well. Make sure the spokesperson stays focused.
4. Listen. Politicians tend to talk in generalities. Politely ask direct questions, try to draw out firm statements and commitments on your issues.
5. You may not know all the answers. Very often a legislator will ask you a question about the issue you are bringing to them. Sometimes you don't know the answer to that question. Never give an answer that you are unsure about; if you turn out to be wrong you will lose credibility. Telling the legislator that you don't know the answer but that you will research it and get back to their office is the appropriate response. This is also an opportunity for further contact between you and the legislator.
6. Don't Argue: If the legislator doesn't agree with you on an issue, just move on. Don't ever argue with a legislator, respect their opinion, there will be other issues that you do agree on, arguing can leead to a strained relationship which is one of the worst outcomes you can have for any meeting.

7. Leave Something Behind: Have your issues prepared in a professional manner on paper that you can give to the legislator. This material is important and will likely end up in the hands of a staff member who can research it and use it for policy development.

8. Appreciate Staff Members: You won't always be able to meet with the legislator themselves, sometimes you'll meet with a staff person. Don't be disappointed, this is not a bad thing or a sign of disrespect. Staff are the eyes, ears, and hands of the legislator. They have the legislators ears and will be extremely attentive to you so that they can properly pass the information on to their boss. They are often the people assigned to work on the issues and to research them. A meeting with staff can often be even more productive than a meeting with the legislator.

9. Take Notes.

10. Follow Up: Send thank you letters after the meeting. Take the opportunity to reiterate the issues you discussed.

Transportation Testimony to the NYS Assembly

2010-06-04T09:15:00.003-04:00

June 2010

Written Testimony Presented to:
Assembly Standing Committee on Cities,
Assembly Standing Committee on Corporations, Authorities, and Commissions,
Assembly Standing Committee on Transportation, and the
Assembly Task Force on People with Disabilities

My name is Robert Poulin and I’m an advocate for people with disabilities employed by the North Country Center for Independence located in Plattsburgh, New York. The service area covered by the North Country Center for Independence includes all of Clinton County, northern Essex County, and parts of north-east Franklin County. This large geographic area is primarily rural and the number one barrier to full independence for people with disabilities in the region is the lack of accessible transportation. For this reason we very much appreciate the opportunity to present testimony regarding transportation to the Assembly on behalf of people with disabilities in our service area.

As I’m sure you are all fully aware, accessible transportation is vital to the ability of people with disabilities to remain independent in the community. Transportation to work, to medical appointments, to vital errands such as shopping, and to community activities are all basic necessities of independent living. While Clinton and Franklin Counties have fairly robust public transportation systems, Essex County falls far short of being able to provide an even bare-bones basic public transportation network that serves its communities. Even in the counties with decent transportation systems there are gaps, such as no service on Sundays, which limits people’s freedom to participate in certain activities.

Taxi cabs are a big part of the transportation network in the North Country. People who don not have vehicles for whatever reason often rely on taxi service to get them to work or other locations when limited bus service isn’t available. People with disabilities who use wheelchairs are typically unable to access taxis because very few, if any, are accessible. While some people are able to transfer from their wheelchairs into a standard vehicle many others are not able to do so, either because they lack the mobility or strength and/or they are using a powered-chair that simply cannot be stored in the trunk of a vehicle. There has been a history of small companies coming into the market with an accessible vehicle but most of them do not survive long. There are some very large and long running companies who have made no attempt to expand their service. We believe that action from the New York State government to pass legislation requiring a certain number of accessible cabs based on fleet size, would be in the spirit of the American’s with Disabilities Act and would be of great benefit to the citizens of the state.

I very much support the passage of A5549 (Titus), which would require operators of taxis, limousines, and shuttles to purchase a wheelchair accessible vehicle whenever they make their next vehicle purchase. Companies with 11 to 100 cars would be required to have up to 10% of their fleet accessible while those with a fleet of 200 plus would be required to have 20% of their vehicles accessible. Acquiring the accessible vehicles would be done when the operator is ready to purchase a new or used car or within 3 years of the passage of the law.

The passage of A5549 would provide a greater range of transportation options for people with disabilities across the state. In these difficult economic times when state and local government are cutting services such as public transportation it is vital that additional options for accessible transportation be made available. The state also stands to save money through the Medicaid program, which now often pays expensive ambulettes in order to transport wheelchair users to medical appointments, if accessible cabs are available.

Thanks again for the opportunity to present this vital testimony on behalf of people with disabilities in the North Country. I very much appreciate your commitment to the people of New York.

Sincerely,

Robert Poulin
Systems Advocate
North Country Center for Independence
102 Sharron Avenue
Plattsburgh, New York, 12901

Tell the President We Need a Disability Rights Leader Like Justice Stevens!

2010-05-04T11:16:00.003-04:00

Action: Contact the White House at (202) 456-1111 (phone), (202) 456-6213 (TTY) or online at www.whitehouse.gov/CONTACT and tell the President why he should name someone who will uphold the rights of people with disabilities. Ask President Obama to:
· Choose a justice who will interpret disability rights laws broadly, as Congress intended.
· Choose a justice who understands the effect of Supreme Court decisions on people with disabilities.
· Choose a justice who respects the role of Congress in protecting disability rights.

Background: Very soon, President Obama will name a replacement for Justice John Paul Stevens of the United States Supreme Court. For the past 35 years, Justice Stevens has been a strong voice on the Court for the disability community, consistently voting to protect the rights of people with disabilities in cases involving the Americans with Disabilities Act (ADA).

The President now has his second opportunity to shape the Supreme Court for years to come. As he considers potential nominees, the stakes are high for people with disabilities.

Despite Congress's bipartisan passage in 2008 of the ADA Amendments Act (ADAAA) to restore the law's broad reach after years of hostile court rulings, judges are still getting the ADA wrong - still shutting the courthouse door on people with disabilities. We need a leader every bit as strong as Justice Stevens to ensure full enforcement of the ADA and other important disability rights laws. Justice Stevens' replacement must be committed to the protection of disability rights.

The White House needs to hear now from advocates for people with disabilities.

Why this nomination is so critical:

President Obama has voiced his support for the values -- including independence, integration and equal opportunity -- expressed in federal disability rights laws such as the ADA, the Rehabilitation Act, the Medicaid Act and the Individuals with Disabilities Education Act (IDEA). To advance disability rights, we ask the President to:

Choose a justice who will give disability rights laws the broad remedial effect intended by Congress. In several significant decisions in the years before the ADAAA, the Supreme Court chipped away at core protections for people with disabilities. During this time, Justice Stevens concurred in important decisions affirming disability rights, including City of Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985); Bragdon v. Abbott, 524 U.S. 624 (1998); and Olmstead v. L.C., 527 U.S. 581 (1999). In his dissent in Sutton v. United Air Lines, 527 U.S. 471 (1999), he argued forcefully that whether a person is disabled and thus protected by the ADA should be considered without regard to mitigating measures. Although his colleagues on the Court disagreed, Congress later followed Justice Stevens' dissent on this very point in enacting the ADAAA.

We want President Obama to select a justice who will interpret the ADA and other disability rights laws as broadly as Congress intended, so that all people with disabilities have an equal opportunity to succeed in school and at work and to lead independent lives in their communities.

Choose a justice who understands the effect of Supreme Court decisions on people with disabilities. Supreme Court decisions have consequences, not just for the parties before the court, but for everyone. For example, when the Supreme Court ruled that Casey Martin, a golfer with a mobility disability, could use a golf cart on the PGA tour, this made it easier for everyone, including students and workers (not just golfers), to get the accommodations they need for an equal opportunity. Justice Stevens authored the decision in P.G.A. Tour, Inc. v. Martin, 432 U.S. 661 (2001). Similarly, the Court's recent decision in Forest Grove Sch. Dist. v. T.A., 129 S. Ct. 2484 (2009), also authored by Justice Stevens, made it easier for families everywhere to access special education for children with disabilities when public schools have failed to provide needed services.

We want President Obama to choose a justice who understands how important Supreme Court decisions are to the everyday lives of people with disabilities.

Choose a justice who respects the role of Congress in protecting disability rights. In enacting the ADA and other disability rights laws, Congress carefully considered the history of people with disabilities in the United States. The lawmakers acknowledged that many people with disabilities have been ostracized from their families and communities - prevented from going to their neighborhood schools, from working at jobs for which they were qualified and from participating in all aspects of community life. Congress passed laws like the ADA to combat these problems. But in recent years, the Supreme Court has declared that Congress lacked the power to pass some of these laws. Justice Stevens disagreed. For example, he authored the ruling in Tennessee v. Lane, 541 U.S. 509 (2004), that Congress could require states to make courthouses and the entire justice system accessible to people with disabilities. Lower courts have followed this ruling, holding that the ADA requires states to provide access in schools, hospitals, and prisons.

We want President Obama to choose a Supreme Court justice who will respect Congress's important role and hard work in writing and enacting the disability rights laws on which so many people with disabilities depend for protection from discrimination and an equal opportunity to succeed in life.

As we celebrate the 20th anniversary of the ADA, it is especially crucial that President Obama name, as Justice Stevens' replacement, a disability rights champion for the 21st Century Supreme Court.

Health Care Reform Has Passed: Now What?

2010-03-22T14:03:00.002-04:00

Here are a couple of links to information on the Health Care Reform bill that will be signed by the President later this week:

- The healthcare bill: 10 things you need to know
- Timetable of Health Care Reform

Amtrak Accessibility

2010-03-22T11:33:00.003-04:00

If you live in or around Plattsburgh, NY, and you use a wheelchair for mobility, then Amtrak is essentially out of reach for you. While the small Plattsburgh station may never get a full raised platform for seamless train boarding ... standard in larger stations ... a portable lift could be used to enable wheelchair users to get on and off Amtrak trains. Currently, Amtrak says they can't guarantee access, and despite coming at this from different angles, we've received very little encouragement or assurance from Amtrak officials, so far.

On the other hand, we've received initial support from our local state legislators, and Plattsburgh's Mayor. And this Saturday, the Press-Republican published an excellent Editorial on the subject.

If you or someone you know has mobility impairments and used or tried to use the Plattsburgh Amtrak station, please tell us how things went for you. You can leave a comment here or call John Farley at NCCI, 518-563-9058 (Phone & TTY).

A Personal Plea

2010-03-18T18:01:00.002-04:00

I am sharing this message, which I wrote today to Rep. Bill Owens, on the health care reform bill. It represents my personal views only. I recognize there are valid reasons for people to be skeptical or in opposition to the bill. However, there are disability aspects to this debate which I think have been distorted over the last few months, and I think they need to be addressed. I do urge everyone to examine their consciences and look not only at their personal needs, but at the broader good of all, and if you feel strongly about this, let Rep. Owens know your views. These are mine:

------------------

Dear Rep. Owens:

As your constituent, I'm writing to tell you why I'm such a strong supporter of health reform.

Although I am writing as a lone constituent, in my professional life serving people with disabilities, I could name hundreds of people just in the North Country alone who suffer from our current irrational "system" of heath care insurance. While many people with disabilities already get coverage through Medicaid and / or Medicare, many others are unable to qualify for these programs or are unable to maintain eligibility without monthly "spend downs" or other financial gymnastics that are truly bizarre when viewed objectively. They are among the millions of Americans who would directly benefit from many of the provisions of the current Heath Care Reform bill.

Since this summer, we have heard intimations and outright claims that people with disabilities and chronically ill people will somehow be hurt by the proposed reforms. These rumors, while wildly inaccurate, unfortunately resonate with many people precisely because they are used to being on the losing end of almost any changes regarding health care. Put another way, if you are in a boat that is taking on water, and you are an inch away from sinking, someone who stands up to try and do something about it will, for a moment, make you afraid that their very action will tip the boat over. Nevertheless, something has to be done. The water continues to rise, and even if it wasn't, it is unacceptable to spend one's life afraid to make any move at all for fear of losing the meager benefits one has. We can't continue to live like this. No actions are going to be perfect, and a few people might even for a time perceive a worsening of their individual situation. But ultimately, we will all benefit from movement towards the principle of universal coverage. Furthermore, failure to act now will have severe political consequences, including lawmakers being frightened once again to try ANYTHING for years, maybe decades to come.

Conversely, a bill like this that brings even mixed results will be amendable, in part because lawmakers will realize that there is room for experimentation and continued work on this issue.

This is something that you can help bring about by voting in favor of the bill.

This is a national issue with local relevance, but it is also one of those rare issues where the implications are, on balance, more important nationally than any purely local considerations.

I beg you to recognize both the immediate benefits and the long-term significance of this rare opportunity, and vote in favor of the Health Care Reform bill.

Sincerely,

Andrew D. Pulrang

It's The Final Countdown for Health Care Reform

2010-03-12T13:55:00.003-05:00

After more than a year of crafting, debating, speeches, protests, and summits the end of this chapter in health reform is in sight. As posted a few months ago, the leadership in leadership in Congress has several options to get to this end but due to apparent unwillingness to reach the end by Republicans (they demand that the whole process start over!), Democrats have settled on reconciliation. As I discussed in an earlier post, reconciliation is a parlimentary process that allows legislation to be passed with a majority vote and bypasses the Senate's filibuster. In order for Democrats to accomplish this reconciliation they must first have a bill that has been passed by both chambers (and some argue the President must have signed the bill), to this end, Democrats in the House will attempt to pass the Senate version of Health Care Reform without making changes. Once passed Democrats will then pass a reconciliation bill almost immediately and quickly send it to the Senate for a majority vote.

The vote outcome is by no means certain. There are a small number of Democrats who can affect the outcome of the vote and hot button issues such as abortion and the public option could be decisive in a vote that is expected to be nail bitingly close. President Obama has delayed an overseas trip so that he can work the phones over the next week. The process will begin on Monday when the House Finance Committee votes on a framework for reconciliation (see, many Democrats in the House won't vote for the Senate version without having the reconciliation bill ready to vote on right away), after which the rules committee will establish the rules for how the bill will be moved forward. The reconcilation bill has already been written and is in the process of being scored by the Congressional Budget Office (CBO), but there will likely be some final changes as the final votes are sought. Once passed in the House expect there to be some big fights in the Senate on amendments, particularly if the public option makes it into the House version.

Stay tuned, this next week will be a wild ride and perhaps historic.

'Defending Our Freedom'

2010-02-16T11:45:00.003-05:00

ADAPT’s Call to Action for Home and Community in America

As the 20th Anniversary of the signing of the Americans with Disabilities Act draws near, the disability community is not busy celebrating because we are literally in a fight for our lives and our most basic freedoms.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.

As states cut vital services, the federal government, which is charged with protecting our civil rights and enforcing the law, is simply standing by – silent – while Americans with disabilities have their most basic freedoms taken away by the states.

The disability community cannot sit by as our freedom is negotiated away in back room budget deals. We must take action!

Defending Our Freedom is a three-prong national campaign initiated by ADAPT to organize the disability community to:

· Demand that the Obama administration fulfill its duty to aggressively protect the civil rights of disabled Americans and enforce the Americans with Disabilities Act/Olmstead decision;

· File complaints with the Health and Human Services Office for Civil Rights and the U.S. Department of Justice that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced as well as complaints that document the state policies and budget cuts that violate our rights; and

· Document the disability community’s efforts to fight back against state cuts so that we can learn from each other’s efforts, rally others to join our fight, and hold public officials accountable when they do not support our freedom.

I. Defending Our Freedom: Demanding action by the Obama administration

The federal government is responsible for enforcing federal law and assuring that states comply with the Americans with Disabilities Act/Olmstead decision. ADAPT is demanding that the federal government affirmatively and aggressively enforce the Olmstead decision. To do this, the Health and Human Services Office for Civil Rights, must:

1. Accept, investigate and resolve individual and systemic complaints which document state policies and budget cuts that threaten the freedom of Americans with disabilities;

2. Develop specific benchmarks/criteria for assessing state compliance with the Olmstead decision, assess the states and publicly release this assessment on an annual basis;

3. Conduct regular, on-going compliance reviews of states for compliance with the Olmstead decision, and provide technical assistance to states to help them understand how they can voluntarily comply with the law;

4. Work with the Department of Justice (DOJ) to develop “most integrated setting” criteria for determining when DOJ will step in and affirmatively enforce the Olmstead decision;

5. With the Center for Medicare and Medicaid Services (CMS), develop guidance with CMS for the states on the Olmstead decision that requires state Medicaid programs to comply with the “most integrated setting” requirement of the ADA, including a model Olmstead Plan that assures the freedom of Americans with disabilities who want to live in the most integrated setting;

6. With CMS, review state submissions for modifying their Medicaid State Plan and HCBS waiver services for the impact that these changes will have on the state’s ability to comply with the Olmstead decision so that those changes which limit the freedom of Americans with disabilities are not approved by CMS;

7. With CMS, modify Section Q of the Minimum Data Set so that people who indicate they want to return to community living are actively assisted to do so;

8. Publicly report on the progress that has been made so that these results can be discussed in a potential meeting between Georgina Verdugo, the HHS/OCR Director, and ADAPT representatives.

Take action: ADAPT is urging organizations across the country to sign on in support of these demands. If your organization would like to support this campaign, email DOF.signon@gmail.com.

If you go to the ADAPT page for the campaign (www.adapt.org/adapt-campaign.html), you can see the list of organizations that that have signed on in support of this campaign.

II. Defending Our Freedom: Filing complaints to protect our freedom

The Health and Human Services Office for Civil Rights and Department of Justice are charged with protecting the civil rights of Americans with disabilities who want to live in the most integrated setting. Although they are able to affirmatively enforce the law without specific complaints, these agencies typically take action only when complaints are filed. We need to file complaints that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced. We must also file complaints that document the state policies and budget cuts that steal the freedom to we are entitled under the Olmstead decision.

Take Action: ADAPT has prepared a form you can download and fax to us toll free at 1-888-324-0787. We will forward your complaint to the Health and Human Services Office of Civil Rights, the appropriate HHS/OCR Regional office, and the Department of Justice. If you choose to file your complaint yourself, please notify us at DOF.complaint@gmail.com that you have filed a complaint and, if possible, send us a copy.

III. Defending Our Freedom: Fighting back and sharing our stories

Even though there are different battles in individual states, we are fighting the same fight. To strengthen these efforts across the country, our campaign will collect personal and state stories about the effects of budget cuts and the efforts to fight back against them. ADAPT has created a website (www.defendingourfreedom2010.blogspot.com) where we can post information and pictures of your advocacy. This will create a public record of the disability community’s efforts to stop cuts and hopefully inspire others across the country to speak up and speak out, too. State advocates can also submit individual calls to action so that we can support each other’s efforts.

Take Action: Send submissions to defendingourfreedom@gmail.com. And remember to keep up on what groups are doing by reading the blog: www.defendingourfreedom2010.blogspot.com.

Health Care Reform In Jepardy

2010-01-22T10:52:00.002-05:00

Once again health care reform is in jeopardy of failing. This time it is the election of Scott Brown to the US Senate that has put more than a years work in real peril. Mr. Brown won the special election in Massachusetts to fill the Senate seat of the late Edward Kennedy. The election was held on Tuesday January 19th. How can one man derail what a majority of Congress has voted for? As part of his platform for election, Republican Scott Brown promised to be the 41st vote for fillibuster, which would prevent the Senate from holding a final vote on the jount House/Senate version of the health care bill.

So, What happens now? There are several possible outcomes as follows.

First off, the House could vote to accept the Senate version as is. If the House votes for a 'same as Senate' bill, there would be no need for another Senate vote and the bill would immediately go to the President for signiture. This outcome is unlikely because a great many liberals in the House strongly dislike what they consider a 'watered down' Senate bill.

Another option is for the House to leverage its new found power to gain improvements in the health care bill. Up until now it was the Senate that held the cards in this debate, with a few moderate to conservative democratic senators holding the bill hostage to their demands. In the opinion of many liberals this led to a weakening of the bill but there seemed to be no other way to pass the bill. Now however, both the Presient and the Senate need House liberals to vote for the Senate version in order to save the bill. The House can refuse to pass the Senate version unless they get promises that there will be a reconcilliation later on in the year. Reconcilliation is a legislative process that allows legislation to be moved through the budget process, the benefit of doing this is that budget bills cannot be fillibustered and require only a majority to pass. The purpose of the reconcilliation would be to add House demands that would strengthen the health reforrm bill. If the Senate promises to improve the bill through reconcilliation, then the House would vote for the Senate version of Health Reform as is and improve it later in the year through the budget process. Early indications are that the House is indeed attempting to move in this direction.

Another option already mentioned by President Obama is to pass small pieces of the bill, the parts that are less controversial and have wider support such as an end to the practice of discrimination based on pre-existing conditions. This less ambitious road to insurrance reform would seem to hand Republicans a huge victory and would fail to meet many of Obama's stated goals. Are Obama's statements supporting this route calcullated to spur democrats to reach an accomodation that would save health care reform?

The last option is that the whole thing falls apart and nothing is done. This is a very real possibility considering the history of health reform efforts in this country. Considering the effort and political damage that this debate has already caused, it is very likely that failure now could mean decades more time, and tens of millions more uninsurred before it is attempted again.

So, is health reform dead? Not yet, there are opportunities that could lead to a very strrong bill if leadership and fearlessness are exhibited by our congressional prepresentatives. If on the other hand, self preservation and fear are the guiding lights on Capital Hill, there will be a weak version of insurrance reform that leaves millions on their own, or even worse, nothing will change. The time is now, people are suffering in the greatest and wealthiest nation in the world and its all due to selfishness, fear, and lack of care for our fellow countrymen. The goodness and kindness of people shines like a beacon in times of disaster, such as in Haiti, we need this to be so all the time. We need health care reform now, it won't be perfect, it will very likely need fixes along the way, and we may all have to endure some rationing of one kind of another but we need this. Make no mistake, rationing is already here, people who are uninsurred have been rationed based on the amount of money they have, this is neither moral or just. If rationing must take place, which in most cases is true for any finite resource, then it sure occur with thought on a moral and just basis.

Update on Health Care Reform

2010-01-05T10:45:00.003-05:00

On Christmas Eve of 2009, the US Senate finally passed its version of health care reform. This was a significant event and moves us one step closer to a final bill. The more than 1 month debate on health care in the Senate was marked by much tension and the bill was changed several times. The original bill introduced by Senate Majority Leader Ried contained a public option that allowed states to 'opt-out', this plan was unable to garner the support of 60 Senators and so was dropped. As expected the Republicans fillibustered the bill and Democrats responded by forming a committee of 5 moderate and 5 liberal Senators to work out a compromise. The first agreement contained a Medicare Buy-in provision that would have allowed American's as young ass 55 to buy into Medicare. This plan proved unacceptable to Senator Lieberman of Connecticut and so was dropped. The question of government funding of abortion also proved to be a stumbling block threatening to unravel the entire bill, tempers flared as liberal Senators grew angry that a relatively small group of Senators were forcing major changes in the bill. In the end however, Democrats needed every single vote they could get and so the bill was weakened in favor of passing something.

The two bills will now have to be joined into one final bill that both chambers of Congress will once again have to vote for before the President can sign it into law. Normally, both the Senate and the House will appoint members of their chambers to represent them at a formal conference committee whose purpose is to negotiate a final bill. Indications from Congressional leaders however is that this formal process will not be used in this case due to concerns of Republican tactics of delay, in stead, there will be private meetings between the leaders of each chamber and representatives from the White House and a final bill will be hammered out behind the scenes. The word is that Congress hopes to pass the final bills before President Obama's State of the Union address in early February...so stay tuned.

You can check out a side-by-side comparison of the Senate and House bills by clicking on the following link:

2009-11-15T16:34:00.000-05:00

First Look: State Budget Savings Proposals from Statewide Disability Organizations

The Center for Disability Rights, New York Association on Independent Living, and the Consumer Directed Personal Assistance Association of New York State have drafted a series of proposals in response to the State of New York's budget crisis. The proposals are designed to reduce the state's Medicaid spending for long term care, while fulfilling the commitment to offering all those who want it the opportunity to receive their long term care supports in their own homes and communities, rather than in institutional settings.

Read the proposals by clicking this link.

Watch "Glee"

2009-11-13T21:13:00.002-05:00

This episode of the FOX Network TV show "Glee" seamlessly incorporates more interesting disability themes and character interactions than I've ever seen in a mainstream TV show. It will make you think, and it's funny and entertaining, too. Watch it now while it is still available for free, and feel free to write in your comments.

Protesting Cuts to Home Care and SSI in Albany

2009-11-10T13:28:00.003-05:00

4 advocates from the North Country Center for Independence joined over 100 other advocates from across the state to protest Governor Paterson's proposed cuts to home care, SSI, and ILC funding. The following is a quick report on the day's events from Lindsay Miller, Systems Advocate Coordinator with the New York Association of Independent Living.
_________________________

Hello everyone,

Our action in Albany yesterday was one of the strongest, and our message was delivered loud and clear. We had over 150 disability advocates present and over 15 ILCs were represented. Our bright green shirts flooded the halls of the LOB in the late morning and our flyers were spotted on desks in nearly every office. Our presence in the Capitol later in the day was not to be missed as we lined each entrance way to the Assembly chambers, chanting and singing as our legislators, Lt. Governor Ravitch and Governor Paterson all entered for the joint session. Governor Paterson cowered as he passed through our chants “Governor, Governor, are you dense? Cutting home care makes no sense!”, while several legislators showed visible support for our message, including Senator Kruger, Chair of the Senate Finance Committee, who held our leaflet high as he entered and exited the chambers.

Though legislators are scheduled to gather for a special session today to decide on a deficit reduction plan, we don’t expect any final decisions to be made. The negotiations are ongoing and we will continue to update you. In the meantime, please keep up the pressure and continue to call your legislators and urge them to stop the cuts to home care, personal care, SSI and ILCs. Look for additional action alerts in the upcoming days and weeks as we continue to monitor activity in Albany.

Thanks again to all of you who traveled for hours to come to Albany and maintained the endless energy and enthusiasm throughout the day! Special thanks to CDR for staffing, planning and funding assistance, our lobbyist Kevin Cleary who was with us throughout the day, and CDPAANYS for joining us in our efforts.

Lindsay
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Please help us fight for home care, SSI, and ILC funding by calling your local legislators and asking them to stand firm against these cuts...cuts to home care will only lead to more expensive institutional placements...we need reform that will truly help the people of New York...Use the links on the right side to find your way to your legislators home page where you can write them an e-mail or get their phone number. If you don't see your legislator listed simply pick one of the legislaors (of the same chamber) and you will find a link to a full member list on the website.

The Affordable Health Care for America Act - H.R. 3962 - Coming to A Vote In the House

2009-11-06T09:43:00.007-05:00

Saturday, November 7th will be an historic day for health care reform in America. For the first time in our history a bill that offers near universal coverage for all Americans will be voted on and very likely passed by the House of Representatives. The bill has recieved a huge boost by the endorsements of both AARP and the AMA. Of particular interest for the North Country is the recent election of Bill Owens to the post of Representative for the 23rd district, replacing John McHugh who became Secretary of the Army. Mr. Owens will be sworn in today and will meet with the President at the White House. His first vote will be cast on this historic health care bill on Saturday ... What an exciting way to begin a term.

So what are the particulars of the final version of the House health care reform bill?

**People with disabilities should be particularly pleased that both the CLASS Act and the Community First Choices Option have been included as part of the final bill. These bills will reward states for investing in community based services rather than continuing the expensive and unwanted institutional bias.

**A public option is part of the final bill ... a government run public insurance option will be available to elligible Americans, and government competition with the private insurance industry may keep costs down.

**Insurance companies will no longer be allowed to deny coverage based on preexisting conditions.

**Insurance companies will no longer be allowed to drop a consumer's coverage when they get sick.

**There will be a cap on what individuals can be charged for after suffering a catastrophic medical problem.

You can see a summary of the bill by clicking on this link.

You can see the full text of the bill (all 1990 pages of it!) by clicking on this link.

After tomorrow, all attention will be focused on the Senate ... stay tuned

Health Care Reform: What To Look For

2009-10-16T18:31:00.000-04:00

Most health care reform proposals contain some method of addressing the basic dilemmas of health care: making sure everyone has health insurance, stabilizing and improving coverage for those who already have it, and containing actual cost of care. People with disabilities should also look for certain provisions and ideas that others might not think about, including:

- Make more people eligible for Medicaid, particularly the "working poor" who now earn too much money to qualify, but not enough money to afford private insurance. This could be done fairly simply by raising the amount of income a person can have and still be eligible for Medicaid.

- Make it illegal for insurance companies to deny coverage due to "pre-existing conditions", and prohibit them from dropping coverage due to a person's change in health or onset of a disability. Currently, if you have private insurance, a serious illness or disability could result in your being arbitrarily dropped. And if you go back to work in a job that includes health insurance, you might still not be able to enroll in it if you already have a disability.

- End the two-year waiting period for Medicare. Now, when a person qualifies for Social Security Disability, they have to wait two more years before being enrolled in Medicare. Ending the waiting period would cover another group of uninsured.

These are three simple, specific steps that would significantly reduce the number of people with disabilities who are uninsured or at risk of losing coverage. In addition, people with disabilities should ask some particular kinds of questions:

- How do the various proposals deal with durable medical equipment ... such as wheelchairs, power chairs, and respiratory equipment? Would they be adequately covered? Would cost-cutting unfairly target these essential, but often expensive items?

- How would long term care be dealt with? Would people be able to choose home care services as easily as nursing home care? Would people be encouraged to buy into effective, flexible long term care insurance?

- How much consumer choice and flexibility in general would there be under new or reformed insurance systems? This is important because people with disabilities often have unusual or more specialized medical needs. We often don't fit well with standardized models that work well for most, but not always for us.

A Brief History of Health Care Reform

2009-10-16T10:13:00.006-04:00

So, healthcare reform continues to move forward. The Senate Finance Committee has finally reported its bill to the full Senate making it the last to finish its work. Now the Senate leadership will meet behind closed doors along with representatives from the White House, and they will merge the 2 bills into 1 so that debate and a vote can occur. The House is doing the same with its 3 bills ... it is hoped that both chambers will be ready to begin debate during the week of October 26th.

As this process moves forward I wanted to take a moment to consider the history of healthcare reform. I think there is a lot to learn from history and it should give pause to those who are saying the bill should be defeated if some part of what they want isn't ultimately included. All too often failure has occurred because one group or another didn't get what they wanted, and once the bill failed it was many years before the chance would came again, and then it was defeated because another group was unhappy. The time to pass healthcare reform is now. We aren't all going to be happy with everything included or not included, but these are things that can be fixed later. If we fail to pass anything, however, it could be decades before we get a chance to make major improvements in health care.

Political discussions of health care ... how to pay for it and the role of government, business, patients, and employers ... have been going on for a very, very long time. Consider:

• Germany was the first European power to adopt a universal health care system, enacting it in 1883. By 1912 the majority of European nations had enacted universal health care systems. Both German and British systems were developed and passed by conservative governments as a way to combat the growth of the socialist movement in their countries.

• President Theodore Roosevelt was the first President to publicly support universal health insurance. Roosevelt was President during the Progressive era and he believed that no nation could be strong with a sick and poor citizenry. In spite of this Roosevelt never pursued a legislative change in the health care system.

• It was the AALL (American Association of Labor Legislation) along with the AMA who was the first to propose health insurance legislation. The effort failed however over a dispute over compulsory insurance coverage and the strong opposition of both the insurance industry and the AFL (American Federation of Labor), who were concerned that government involvement in health insurance could weaken unions.

• Efforts to pass national health insurance took a serious blow in 1917 with US involvement in World War I. Anti-German propaganda targeted that nation’s national health system as a symbol of the evils of ‘socialism’, despite the fact that the system was developed to overcome the socialist movement. The Progressive Era had come to an end and national heath care declined in popularity.

• The Great Depression of the 1930’s brought national health care back on to the political stage. Employment insurance and Social Security were the priority of the era however, and when strong opposition by the AMA and other groups threatened to kill the Social Security bill, the health care provisions were stripped. FDR tried once final time in 1939 with the National Health Act of 1939 had little Congressional support and was only reported from 1 Senate committee and never reached the floor.

• The Wagner-Murray-Dingell bill was introduced in the House of Representatives in 1943 and would have required compulsory insurance paid via pay roll tax. This bill was introduced every year until 1957, 14 years of failed attempts.

• In 1945 one of America’s greatest health care reform champions became President. Harry Truman was passionate about the issue and unlike the more limited insurance plans of the past Truman wanted a single national health care system that would cover everyone equally. Unfortunately Truman’s plan became embroiled in the start of the ‘Cold War’ and opponents of reform attacked national health care as ‘socialized medicine’. The communist scare led to Truman’s plan dying in congressional committee. Truman was undaunted however and made health care one of the pillars of his 1948 campaign, his surprise win led to the most expensive lobbying effort in US history up to that time, by the AMA, who charged its members an extra $25 for the specific purpose of defeating the health bills. A combination of anti-socialist feeling and the fact that by the early 1950’s private insurance companies were doing a good job of providing decent coverage to most American’s led to more defeats.

• Disheartened by their failures, national health care advocates turned to a plan that would provide hospitalization for the elderly. First introduced in 1956, the early Medicare bill was strongly opposed by the AMA but for the first time in the health care reform movement it was met by a massive ground swell of a grass roots support from the senior citizens community. It took 7 years to work out the details of compromise but the final result was the Medicare/Medicaid legislation signed into law in 1965 by President LBJ.

• Prior to this year, one other attempt at national health care was made. In 1993, President Bill Clinton introduced a plan primarily written behind closed doors by a panel of experts led by the First Lady, Hillary Clinton. The core of the plan was a mandate on employers to provide coverage and a complicated health maintenance system that was so complicated that opponents made hay of it with colorful flow charts that provided much fodder for late night comedians. The usual suspects of opposition lined up against the plan, including the AMA, the health and pharmaceutical industries among others. Democratic chairmen offered their own bills and by September 1994 the last bill was declared dead. And so we come to today.

More Health Care Reform Talk

2009-09-29T14:51:00.004-04:00

The big issue this week in Washington on health care reform is the controversial "public option". A few members of the Finance Committee are trying to add the public option to the working bill as an ammendment. So, what is the public option and what's the big stink?

The public option is simply a government-sponsored insurance plan/policy, like Medicaid or Medicare. Why do some folks feel that the public option is neccessary? Two of the most important goals of health care reform are to insure everyone (universal coverage), and contrrolling the sky rocketing cost of health care to everyone. Many people feel that it isn't in the interest of private insurance companies to acccomplish either goal, especially the second one. Why would private insurance companies want to control costs when they are the ones benefiting from high costs, supporters of the public option ask. These "progressives" believe that the government is needed to insure universal coverage and to keep costs down. The idea is that if private companies are forced to compete against a government-run insurance program they will be forced to keep prices down in order to maintain a customer base.

On the other hand, those who oppose the public plan fear that the public option is nothing more than a long term strategy to destroy private insurance and force everyone into government-run health insurance. They misstrust government and rightfully point to many failings in efficiency or common sense in other government run programs. I can certainly understand not wanting to over-institutionalize any large sector of our economy such as health care.

There are also some folks who don't want any change and oppose health care reform of any kind, and are using the public option as cover for their opposition. Many of these folks use fear and lies to push their agenda. The "death panel" argument used to suggest that the government option would allow government employees the ability to kill off seniors and "people with special needs", is such an example. You'll often here these folks talking about the public option as a conspiracy to turn the country into a "socialist" country where the government runs everything. This arguement has been around since the Social Security debate in the 1930 and the Medicaid / Medicare debate in the 1960s. Yet neither program has resulted in "socialism", and both programs are now widely supported by people of all political views. Also, most of the democratic countries of the world, including Isreal, have a national health care program with parts of their systems run by the government ... and not one of them has ever fallen to communism or socialism.

On a personal level, the idea of a "trigger" seems to make good sense and may be a good compromise between both sides. This proposal would not have a public option to start off with. It would allow private insurance companies the opportunity to prove that they can cover everyone and control costs. If after a certain amount of time, say, 3 to 5 years, they haven't accomplished both of these goals then a public option would be created to give people another option. The "trigger" would the private insurance companies failing to meet the goals in a timely manner.

Note: As I finish this article the news from CNN is that the public option ammendment has been defeated in the Senate Finance Committee. This does not mean that the public option is dead, simply that the Finance Committee bill will not contain this option. This means of the 5 health care reform plans in the Congress, only the Senate Finance bill doesn't contain the public option, so this debate is far from over.

Governor Paterson Betrays Disability Community

2009-09-25T11:18:00.003-04:00

Governor Paterson has vetoed 2 of our biggest bills of 2009. We worked all year to get the Polling Site Access Bill and Title II Bill passed through both the Assembly and the Senate and in the end, dispite pleas, our governor decided to veto both bills, along with 26 others in order the save the state $28 million over 10 years. This is dispite the fact that our bills were either deficit neutral or had a neglibile cost. Both bills could have had a huge impact on the lives of people with disabilities, guaranteeing access to the ballot box and codifying Title II of the ADA into New York Human Rights law which, would have strengthened our right to equal opportunity and equal service in state and local government services.

Isn't it ironic that the governor would complain this week when information leaked out that President Obama is encouraging the Governor not to run next year. Apparently, Gov. Paterson feels betrayed that the first African-American President isn't supporting the first African-American governor of New York. I wonder if the first disabled governor of New York can understand how the disability community feels, seeing measures we have advocated for years vetoed, for all we know without much thought, to save a few dollars. We don't expect a Governor with a disability to please the disability community all the time, but helping enforce our basic civil rights, including the right to accessible, independent voting, shouldn't even be a question.

The "Community First Choice" Amendment

2009-09-25T10:30:00.006-04:00

Our own Senator Schumer introduced the Community First Choice amendment to the Senate Finance Committee's health care reform! The amendment has been scored and is part of the bill, therefor it will not need a seperate vote.

The amendment would give states increased federal Medicaid matching funds for providing attendant services and supports as an alternative to nursing facilities and institutions.

Responsibility for writing the health care bill was given to 5 seperate committees in the Congress, 3 in the House of Representatives, and 2 in the Senate. At the time of this post, 4 of the committees have completed their work and reported their bills. The Senate Finance Committee is currently voting on over 500 amendments to its bill and should have a final vote in the next week or 2. When the Finance Committee finishes its work, the various bills will be merrged into 1 bill for each chamber. Each chamber will then debate the merged bill, offering additional amendments and then having a final vote. Assuming that each chamber passes a bill, if they differ from each other a Conference Committee of representatives from both chambers will negotiate a single bill, then a final vote will be held by both houses and if passed will move on to the Presiden't desk for signing.

President's going back as far as Theodore Roosevelt have been trying to pass health care reform, and at this point in the process we are further along than at any other time. There are still weeks and months of hard work ahead. There are still many opportunities for us to assure that important reforms are included for people with disabilities and there are still many opportunities for them to be removed so we need to stay proactive and aware of everything that is happening.

Federal Court Rules on "Adult Homes" for Mentally Ill

2009-09-21T18:39:00.002-04:00

A recent Federal Court ruling against the State of New York has important implications for people with mental illness and other disabilities. Advocates strongly urge Governor Paterson not to appeal the ruling, but instead to correct the ADA violations the judge cited. Here are two Op-Ed pieces worth reading:

NY's Betrayal of the Disabled, by Harvey Rosenthal

Mentally Ill Seek More Independence, by David King

New York Times Article on Nursing Home Transition

2009-09-21T13:08:00.003-04:00

The September 19th New York Times carried a page one story titled, "Helping Elderly Leave Nursing Homes for a Home", which describes the "Money Follows The Person" initiatives operating in several states, including New York. In addition to explaining the administrative side of the program, it does a good job of explaining what it is intended to correct ... the tendency of people to "end up" in nursing homes when they could be living just as safely, more freely, and more economically in their own homes with support.

Disability Perspectives on Health Care Reform

2009-09-18T09:53:00.004-04:00

Health Care Reform is the most important domestic priority for people with disabilities since the passage of the Americans with Disabilities Act in 1990. The current health care system is broken and people with disabilities suffer a constant threat to their ability to achieve and/or maintain their independence as a result of the lack of accessibility and affordability of health care. The incomplete, patchwork nature of health insurance in the United States is a major factor in the decision of many people with disabilities to not seek employment. They fear losing their Medicaid / Medicare coverage or of having to pay large spend-downs in order to keep that coverage. Working people with disabilities who lose their public health insurance find it impossible to gain private insurance due to pre-existing conditions that disqualify them from most health insurance policies. Furthermore, many employers will not hire a person with a disability for fear that their health insurance premiums will go up due to percieved risk.

At this stage, it is hard for us to endorse or criticize any particular health care reform bill or strategy. However, here is a list of some of the reforms that people with disabilities should look for in the bills currently being debated, and those that may emerge. In the coming days and weeks, we will talk specifically about the proposals that are being debated in Washington and how they would impact our community ... and give ideas and suggestions on how we can participate in the debate. We need to make our voices heard.

** End the two year waiting period for Medicare eligibility after disability has been verified.

** Prohibit insurers from excluding or terminating coverage of people because of pre-existing conditions.

** Make all Americans living at or below 100% of federal poverty rate eligible for Medicaid.

** Hold private insurers to a higher standard and stricter guidelines for what they cover and how they treat their customers. Include an additional publicly-funded insurance option for people who would choose it.

** Reform the long-term care system to provide more choice and access to home and commuunity services, to ensure people with disabilities have the choice to live in their own homes and communities.

Please pay close attention to the debate as Congress works towards a final bill. Beware of misinformation. There are forces that don't want health care reform at all, and they have already shown that they will use any tactics to kill it ... including playing on the fears and insecurities of seniors and people with disabilities. While some of our concerns may be worth discussing, exaggerating them and misrepresenting the facts doesn't help anyone. We need to raise our voices. We have much to gain in reform and even more to lose without it.

For links to information on health care reform, visit our Health Care Reform webpage.

New York Times Article on Assistive Technology

2009-09-15T19:54:00.003-04:00

Insurers Fight Speech-Impairment Remedy, by Ashlee Vance ... This September 15, 2009 article describes how federal Medicaid and private insurance rules designed to curb waste and abuse often actually prevent people with disabilities from taking advantage of cheaper, more efficient assistive technologies, simply because they have multiple uses.

NCIL 2009 Federal Disability Legislative Agenda

2009-09-08T14:02:00.003-04:00

The National Council on Independent Living (NCIL) recently released its 2009 Legislative and Advocacy Priorities, a blueprint for disability issues on the federal level. We present a summary of these advocacy priorities in two parts over the next two months. You can visit www.ncil.org to find a pdf and text copy of this agenda and other disability information.

Independent living and Reauthorization of the rehabilitation act: The Rehabilitation Act hasn’t been reauthorized since 1998 and in its current form isn’t meeting all of today’s needs. This important law prohibits discrimination against people with disabilities and it established the Independent Living Program. The new amendments to the act would increase funding for Independent Living and would add a 5th core services, transitioning of people with disabilities into the community from institutional facilities.

Community Choice Act (H.R.1670 & S.683): Although community based services have received much attention in the last decade and funding has increased dramatically, there remains an institutional bias in long term care services in this country. By law, every state that receives Medicaid is required to provide nursing facility services but community based services are optional, leaving them open to budget cuts when hard times come along. The Community Choice Act would require states who receive Medicaid to provide community based supports and services for seniors and people with disabilities who want to remain or return to living in the community. The Community Choice Act must be included in any healthcare reform bill because it can help provide savings as the national average cost of a nursing facility is $72,000 a year verses $42,300 for full time health aid services for a year.

CLASS Act: Community Living assistance Services and Supports (H.R. 1721 & S.697): The CLASS Act would help people with disabilities who are employed and who need insurance that could be used creatively to purchase services, supports, and technology to better aid them to live independently.

Promoting Wellness for People with Disabilities (H.R.1938): This legislation is the first of its kind to address the need for accessibility standards for medical equipment such as examinination tables, examination chairs, weight scales, mammography equipment, X-ray machines, and other equipment used for diagnostic purposes.

Ending the Medicare Waiting Period Act (H.R.1708 and S.700): This legislation would eliminate the waiting period of two years for people receiving Social Security Disability within 10 years of enactment. The bill would immediately eliminate the waiting period for people in need of life saving treatments.

Medicare Independent Living act: Under current law, people receiving long term care services through Medicare must be ‘home bound’. This rule was established decades ago when technology had not advanced sufficiently to allow people with the most severe disabilities to move throughout the community. This bill would change this relic of the past recognizing that technology grants greater independence for even those with the most severe disabilities and the law should not impede freedom and independence.

ADA Notification Act (2397): This would further delay enforcement of the ADA by requiring notification and 90 days grace period before a complaint could be filed against an entity. Obviously NCIL and most if not all disability organizations oppose this bill. After nearly 20 years of existence for the ADA more delays on enforcement isn’t what is needed.

Housing Fairness Act of 2009 (HR 476), National Housing Trust Fund, Section 811 Supportive Housing for People with Disabilities: These bills and budget proposals provide support for existing affordable and accessible housing programs and expand their mandate increasing opportunities for deinstitutionalization of persons with disabilities.
Assistive Technology Act: This legislation allows people with disabilities to learn about, experiment with and receive accessible technology in order to support their independence.

The Twenty-First Century Communications and Video Accessibility Act: This bill would provide money and guidelines requiring that certain steps be taken to ensure that people with disabilities aren’t left behind in the communications revolution. A large part of this includes simple software development and updates that will keep the new technologies functional for everyone.

NCIL further supports the following bills and initiatives; Federal Housing Finance Reform Act, full implementation of the Help America Vote Act, Local Law Enforcement Hate Crime Prevention Act, full funding of all community transportation provisions of the Safe, Accountable, Flexible, and Efficient Equity Act, Homeland Security appropriations for all Emergency Management Reform Bill, Inclusive Home Design Act, and Senior Executive Service Diversity Assurance Act.

(A special thanks to our summer intern, Christina Moore for the work she did on this article)

UN Convention on the Rights of Persons with Disabilities

2009-08-03T19:11:00.002-04:00

On July 30, 2009, the United States signed the United Nations Convention on the Rights of Persons with Disabilities. Like most UN measures, this won't become binding law in any country, but it does lay down an important marker for globally-recognized standards of human rights for people with disabilities. It may also help spur much-needed change in cultural and political attitudes in countries where the such rights are still fairly new and underdeveloped.

Community Choice Act of 2009

2009-08-03T19:08:00.004-04:00

For more information on this important legislation in Congress, click the links below:

House Bill - H.R. 1670 Community Choice Act

Senate Bill - S. 683 Community Choice Act

These web pages contain the full text of the two bills, updates on their status, brief summaries, lists of cosponsors, and other up to date information.

Action Alert: Contact Your Congressional Representative: Ask Them to Support the Davis Letter!

2009-07-16T20:28:00.002-04:00

Action:

Email Rep. John McHugh here

Background:

Representative Danny Davis needs your help. He has written a letter asking that the Community Choice Act (H.R.1670) be included in healthcare reform, and needs members of the House of Representatives to sign on in support of this initiative. So far, these representatives have signed on:

John Lewis (GA)
Don Young (AK)
Robert Wexler (FL)
Elijah Cummings (MD)
Yvette Clarke (NY)
James Langevin (RI)
John Olver (MA)
Eric Massa (NY)
Kendrick Meek (FL)
Joe Sestak (PA)
Jesse Jackson Jr. (IL)

If any of these people are your representatives, please thank them for their support!

Representative Davis feels that members of Congress will be very likely to sign on to the letter if requested to do so by their constituents (you). Please contact them and ask them to sign on. Let them know how important the Community Choice Act is to you and the disability community.

The Community Choice Act (CCA) would address the issues facing low-income people with disabilities and seniors, who are often forced into nursing facilities for lack of in-home services, reversing the unjust institutional bias in our long term care system.

Seniors and people with disabilities overwhelmingly prefer to live in the community with supports rather than receive long term care assistance in a nursing facility or other institution. Unfortunately, the current long term care system does not give people a choice and often requires that people go into a nursing facility or other institution to get the assistance they need. The Community Choice Act gives people real choice in long term care options. This legislation ends the institutional bias in the Medicaid program by giving individuals who are eligible for nursing facility services or other institutional "care" equal access to community-based services and supports, like attendant services.

Supreme Court Nominee Sonia Sotomayor is Good for People with Disabilities

2009-06-26T11:48:00.004-04:00

President Obama recently nominated Judge Sotomayor to fill the vacancy left in the Supreme Court by Justice Kennedy's early retirement. Judge Sotomayor is a woman, a Latino, and a person with a disability. At age 8 she was diagnosed with Type 1 Diabetes. In his introduction of Sotomayor President Obama said, "It's my understanding that Judge Sotomayor's interest in the law was sparked as a young girl by reading the Nancy Drew series. And that when she was diagnosed with diabetes at the age of 8, she was informed that people with diabetes can't grow up to be police officers or private investigators like Nancy Drew. In essence she was told she'd have to scale back her dreams." Instead, Obama said, her perseverance shows that "no dream is beyond reach in the United States of America."

There has been much debate about the place of personal experience in the life of a judge who must make decisions based on the law and not personal feelings. There is probably no greater example of how personal experience can be an asset and not a hindrance in forming legal opinion than in cases involving the Americans with Disabilities Act and other disability related cases. Preliminary research of Judge Sotomayor's vast case load shows that she has been thorough in her research and investigation of individual cases, both overturning jury decision and dissenting with other judges when those cases have shown a failure to follow the whole law because of lack of investigation of understanding of disabilities.

Jim Ward, founder and president of ADA Watch, said the following in a recent press release, "In picking Judge Sonia Sotomayor, President Obama has upheld his commitment to choosing a nominee with a firm grasp on the law and the role of the judiciary and has responded to the hopes of those in the disability rights movement for Supreme Court Justices that understand disability rights and the intent of Congress in passing vital civil rights protections for people with disabilities. Legal research and analysis of Judge Sotomayor's opinions reveal a comprehensive understanding of the language and purpose of the Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), Rehabilitation Act, Social Security and more."

On July 13th, the US Senate will begin confirmation hearings on judge Sotomayor's nomination. For over a decade now the ADA has been under assault in the Supreme Court, the confirmation of Sotomayor will be a step in the right direction, finally the disability community will have a justice on the high court who truly understands disability issues from a life time of personal experience.

Use this link to read the analysis of Sotomayor's decisions in disability cases that have come before her.

You can also chack adawatch.com for more information. This post takes much of its information from these two sources.

TV Depiction of Disability

2009-06-01T20:57:00.003-04:00

A couple of weeks ago, the Fox Network broadcast the Pilot Episode of a new comedy called "Glee", about the underdog misfits of a midwest high school "glee club" and their struggle for respect in the brutal world of high school social life. One of the members of the glee club is a wheelchair user and another stutters. There are a few key scenes in which these disabilities are part of the humor. For most of the show, this was disturbing to me, but by the end, I was ready to at least be open minded. Will the show, which will start airing new episodes in the fall, do more with these disabled characters? Or, will they continue to be the one-dimensional butt of jokes at their expense? What do you think?

ADAPT Letter to President Obama

2009-06-01T20:49:00.006-04:00

The following is the final draft of a letter from ADAPT to President Obama, on the subject of the Olmstead decision and the importance of home care and community-based services:

----------

The Honorable Barack Obama
President of the United States
The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500

Dear Mr. President:

June 22, 2009 is the 10th anniversary of the U.S. Supreme Court’s landmark Olmstead decision. Disability and aging organizations all over the country will be recognizing this civil rights decision.

The Olmstead decision, based on the integration mandate in the Americans with Disabilities Act (ADA) declared, “unnecessary institutionalization amounts to segregation and is a violation of individual civil rights under the ADA.” This case promised to be the national mandate not only to free tens of thousands of people with disabilities and older Americans from unnecessary and unjust institutionalization but also to avoid this type of institutionalization in the future.

The ADAPT Community has heard little from your Administration on how it will implement and enforce the Olmstead decision. Under the previous Administration the implementation and oversight by the federal government had been sporadic and generally ineffective.

The ADAPT Community believes that only with aggressive oversight and the development of accountability measures on how states are to implement the Olmstead decision, will people with disabilities and older Americans be able to stay or transition out of nursing homes and other institutions.

Below are recommendations The ADAPT Community’s are making to your Administration for stronger Olmstead implementation and enforcement. We would appreciate a response to these recommendations by June 15, 2009:

I. President Obama should issue an Executive Order for an Intra-
agency review as well as Inter-agency cooperation on policy
changes that will implement and enforce the Olmstead decision
with benchmarks and timetables for accountability.
HHS should be the lead agency.
President Bush issued an Executive Order
soon after taking office to coordinate the federal governments
response to the Olmstead decision. Though initially producing
some policy modifications, the overall results have been
disappointing. President Obama should use the current Executive
Order as a model but give it more authority for real changes.

http://www.whitehouse.gov/news/releases/2001/06/20010619.html

II. President Obama should direct the Secretary of Health and
Human Services (HHS) to develop policies and accountability
measures for how states must implement the Olmstead decision.

III. President Obama should direct the HHS/Office of Civil Rights
(OCR) to be given more authority to make states more
accountable for implementing the Olmstead
decision with referrals to the Department of Justice for legal
action when necessary. HHS/OCR should accept and review
individual as well as systemic complaints against a state.
Possible withholding of Medicaid payments to states for non-
compliance should be made clear to all Governors and Medicaid
Directors. Results of all state reviews should be made public on
the HHS website.

IV. President Obama should direct the Secretary of Housing and
Urban Development (HUD) to develop policies and programs that
will facilitate the transition of people from nursing homes and
other institutions to integrated community living.

ADAPT’s “Access Across America” should be looked at as one
program to implement.

V. President Obama should direct HHS to work with the National
Governors Association, National Conference of State Legislators
(NCSL) and advocacy stakeholders on Olmstead implementation
best practices as well as the expectations of the his
Administration for reforming the current institutionally
biased long term care system.

VI. The Domestic Policy Council in coordination with the Secretary of
HHS should convene quarterly meetings of The ADAPT
Community and other aging and disability advocate organizations
to: 1) get recommendations on policy changes that would get and
keep people out of nursing homes and other institutions;
2) report on Administration’s progress in implementing the
Olmstead decision.

Reform of the institutionally biased long term care system ultimately will require addressing the Medicaid entitlement that is currently only to nursing homes services. That is why the Community Choice Act (CCA) should be included in your comprehensive reform of the health care system. The anniversary of the Olmstead decision provides a timely opportunity for you to express your support for this legislation and the principle that people with disabilities and older Americans have a civil right to live in the most integrated setting.

Including CCA in health care reform and aggressive Olmstead implementation and enforcement will assure that the growing number of people with disabilities and older Americans will have a real choice to live and receive services and supports in the community. We hope to work with you to this end.

Looking forward to your positive response by June 15, 2009.

For an Institution Free America,

The ADAPT Community
1640A East 2nd Street
Austin, Texas 78702
adapt@adapt.org
www.adapt.org
512-442-0252

Disability Perspectives on Health Care Reform

2009-05-18T20:09:00.001-04:00

All indications suggest that we are about to see a big push for major changes in how health care is paid for and delivered in this country. "Health Care" is an extremely broad topic, and the pressure from all sides to compromise and pare down proposals will be great. So, it is probably important that we think about what people with disabilities need to see in whatever new health care policies are developed. Several national disability organizations have written a letter to Senator Edward Kennedy and Senator Michael Enzi, who will be instrumental in the coming health care debate. The letter begins by citing the many ways in which people with disabilities are inadequately served by the present system, then cites principles for reform, with my comments added in boldface in parentheses:

--------------

"Heath care reform must end these health disparities by ensuring:

Access to affordable coverage for Americans with disabilities, including intellectual and developmental disabilities, without regard to pre-existing conditions, congenital impairments, or whether the intervention is habilitative or rehabilitative in nature;

(The last phrase is key, because "habilitative" care includes home care for daily living, not just temporary "rehabilitative" care until someone "gets better")

Access to quality care by health care providers trained to treat individuals with disabilities, including intellectual and other disabilities;

(This doesn't mean specialists. It means that all medical personnel should be trained how to deal properly with patients who have disabilities)

Inclusion of individuals with disabilities in the definitions of "medically underserved populations" and "cultural competence;"

(Again, this is referring to the idea that as a group, we are always at risk of being treated less well than others, and of being misunderstood in our communication with medical professionals. The medical system needs to recognize this formally so it can address the problem)

A delivery system prepared to provide appropriate, accessible, and equivalent care for individuals with disabilities at all levels of service;

Inclusion of individuals with disabilities in all data collection and reporting required for racial, ethnic, gender, or geographic health disparities, in a manner that can facilitate identification and reduction of disparities associated with physical, mental health, cognitive, sensory, intellectual, and/or developmental disabilities;

Equal treatment of the population of individuals with disabilities in all policies, programs, and research designed to decrease health disparities.

Inclusion of individuals with disabilities in prevention and wellness program;

A healthcare workforce trained to address the needs of individuals with disabilities, including physical, mental health, cognitive, sensory, intellectual, and/or developmental disabilities;

Development of specific quality measures to improve primary and preventative care for individuals with disabilities;

Development and strengthening of the "medical home" to meet the healthcare needs of individuals with disabilities;

Health information technology systems that collect aggregate specific data about physical, mental health, cognitive, sensory, intellectual, and/or developmental disabilities while maintaining individual privacy; and

Inclusion of "disabilities" and "sign language interpreters" in the Office of Minority Health's National Standards on Culturally and Linguistically Appropriate Services (CLAS)

(It is important to collect data on how people with different disabilities are treated. If blind people, for instance, are receiving substandard care, it may only show up in "outcome data" collected and organized by disability. If you don't collect the data, you can't identify the problem)

As the population ages, disabilities will affect even more Americans. This is the right time and healthcare reform is the right place to correct disability-based health disparities so that healthcare reform is for all Americans. Thank you."

Special Olympics
Association of University Centers on Disabilities
Autistic Self -Advocacy Network
American Association of Persons with Disabilities
National Council on Independent Living

--------------

What changes would you like to see in health care? Post your comments!

Victories in the State Budget

2009-04-03T09:05:00.003-04:00

Great news from Lindsay Miller, Systems Advocacy Coordinator for the New York Association on Independent Living (NYAIL) in Albany, great work with the advocacy everyone!

The 2009-10 New York State Budget contains a number of victories for our network, most of which would not have been possible without the ongoing advocacy efforts of all of you. Listed below are some budget highlights of particular interest to ILCs and people with disabilities. We will keep you up-to-date as further budget analyses are done and as we track movement of additional legislation on the Disability Priority Agenda. Many thanks to all of you for your dedication and hard work fighting for the rights of people with disabilities year round.

· ILC Funding remains level for 2009-2010 at the 2008-2009 level of $12,361,000. We were successful in avoiding cuts in the proposed 2009-10 Executive Budget and the Legislature approved the ILC appropriation as proposed.

· Restoration of SSI cuts - Thanks in large part to your endless calls, faxes, letters and emails; the Governor and Legislature have restored funding for the state share of SSI for people with disabilities.

· CDPAP – The budget includes $500,000 for expanding participation in the Consumer Directed Personal Assistance Program, including contracts with peer based programs to assist those eligible, provide education and outreach, as well as training for discharge planners, LDSS and others. In addition, the CDPAP statute will be amended to include county enrollment targets for CDPAP and annual implementation plans to DOH by counties that promote consistency regarding approved service levels across the state. These requirements will broaden access to the CDPAP program throughout the state.

· Regional Long Term Care Assessment Centers – there will be a three year demonstration program established with two long term care assessment centers, one in a county within NYC and the second in another region consisting of one or more contiguous counties elsewhere in the state. The intent of the established centers will be to consolidate and standardize the assessment and authorization process for home and personal care services, allowing the state to better manage Medicaid resources, including due process provisions and consumer oversight, ensuring that individuals receive the services they need to stay in the community. The commissioner of health will be responsible for submitting bi-annual reports on the centers to the Governor and State Leaders which will include an assessment of the project, an analysis of the level and costs of the services and recipient satisfaction.

· The Cash and Counseling Demonstration proposed in the Governor’s Budget has been rejected.

· Cuts to home care and personal care rates were restored; however the 2008 and 2009 trend factors have been eliminated and an assessment will be collected of 0.35% on home care provider revenues effective March 1, 2009.

· An appropriation of $2,303,000 was made available for housing subsidies to participants in the Nursing Facility Transition and Diversion (NFTD) waiver.

· No premium increases for Medicaid Buy-In Program for Working People with Disabilities

· Elimination of barriers to general Medicaid application such as the asset test, finger printing and face-to-face interview requirements.

· Pharmaceutical Reforms - Efforts to preserve Medicaid pharmacy benefits for people with psychiatric disabilities were successful in that the proposal to expand the Preferred Drug List to include antidepressants was rejected. Proposals to eliminate EPIC Part D wrap and Medicaid wrap around coverage for dual eligible with Part D were also rejected. However, limits on frequency, amount and duration of prescriptions in Medicaid, as well as the creation of a step-therapy approach for prior authorization were approved.

· The proposal to weaken and delay NY’s SHU Law, the law to end solitary confinement of state prisoners with psychiatric disabilities, was rejected.

Action Alert: Healthcare Reform and the Community Choice Act

2009-03-05T18:33:00.002-05:00

Healthcare reform is a major priority of the Obama administration this year and the disability community MUST make its voice heard, please take the following actions.

Action:

1. Use the link below to send a fax e-mail to your Congressperson urging them to sponsor The Community Choice Act. (You can learn more information about the Community Choice Act below in the Background section).

Click here to send a message to your Congressperson.

2. Call Senator Schumer (202) 224-6542 and Senator Gillibrand (202) 224-4451 and urge them to support them to make sure that the Community Choice Act be included in any healthcare reform bill.

You can click here to send an e-mail message to Senator Schumer if you prefer it over making a phone call.

Background:

Click here to learn more about the Community Choice Act.

Independent Living funding in the American Recovery and Reinvestment Act

2009-02-15T11:51:00.003-05:00

Late Friday afternoon, 2/13/09, we received this announcement from the National Council on Independent Living:

Background: Centers for Independent Living have advocated for increased funding for years. The stimulus bill has been passed by both Houses and sent to Conference Committee to hammer out the differences. The House bill had recommended $200 million for Independent Living and the Senate recommended $110 million.

The Conference Committees just released the report and Independent Living is slated to receive $140 million! Our advocacy efforts have paid off and increased funding will be available soon.

NCIL is working with Members of Congress and the Rehabilitation Administration Services for Centers for Independent Living and Statewide Independent Living Councils to ensure the funding is distributed according to Congressional intent.

The Text of the Conference report is available at: http://www.rules.house.gov/111/LegText/hr1_legtext_cr.pdf

Vocational Rehabilitation will get $540 million, Part C $87,500, Part B $18,200 and Chapter 2 $34,300. Our program is on page 172 and 173 in the PDF.

View the Joint Explanatory Statement on page 65 of the following:
http://www.rules.house.gov/111/LegText/hr1_cr_jes.pdf

REHABILITATION SERVICES AND DISABILITY RESEARCH

“For an additional amount for "Rehabilitation Services and Disability Research" for providing grants to States to carry out the Vocational Rehabilitation Services program under part B of title I and parts B and C of chapter 1 and chapter 2 of title VII of the Rehabilitation Act of 1973, $680,000,000: Provided, That $540,000,000 shall be available for part B of title I of the Rehabilitation Act: Provided further, That funds provided herein shall not be considered in determining the amount required to be appropriated under section 100(b)(l) of the Rehabilitation Act of 1973 in any fiscal year: Provided further, That, not withstanding Section 7(14)(A), the Federal share of the costs of vocational rehabilitation services provided with the funds provided herein shall be 100 percent: Provided further, That $140,000,000 shall be available for parts B and C of chapter 1 and chapter 2 of title VIl of the Rehabilitation Act: Provided further, That $18,200,000 shall be for State Grants, $87,500,000 shall be for independent living centers, and $34,300,000 shall be for services for older blind individuals.”

For more information: Contact NCIL Policy Analyst Elizabeth Leef by email, Elizabeth@ncil.org, phone: (202) 207-0334, ext 1015 or fax: (202) 207-0341.

Action Alert Update: One more step for Independent Living Stimulus Funding

2009-02-10T15:08:00.003-05:00

Act Now: Ask Congress to keep Independent Living in the Stimulus Bill!

Update: The Senate passed the American Recovery and Reinvestment Act this afternoon by a 61-37 vote. The conferees are Senators Daniel Inouye (D-HI), Max Baucus (D-MT), Harry Reid (D-NV), Charles Grassley (R-IA) and Thad Cochran (D-MS). Likely conferees in the House will be David Obey (D-WI), Charles Rangel (D-NY), George Miller (D-CA), James Oberstar (D-MN), and John Spratt (D-SC). House Republican conferees will be announced shortly.

We need to keep the pressure on both the House & Senate Conferees to keep funding for Independent Living, IDEA, and Vocational Rehabilitation!

Act Now: Persuade your Senators and Representatives to keep IL funding in the stimulus bill. The funding is listed under “Rehabilitation and Disability Research,” but is not research related. Tell them your Center will use the funds to hire critically needed employees to help people with disabilities gain employment opportunities.

Targets: The conferees listed above.

You must communicate the following to your Senators and Representatives in order to secure this funding:

It is critical to keep funding in the bill for Independent Living, IDEA, and Vocational Rehabilitation. CILs need employees. They can make immediate hires. Centers work with people with disabilities to help them become employed, and provide the support needed so that people are job ready and can find good jobs that are sustainable. Funding coupled for all programs will have a huge impact on all people with disabilities across the country.

Centers help people to remain independent in their own homes and communities, and help prevent people from being institutionalized. Centers help ease the financial burden that states have to bear on institutional expenses by keeping people OUT of institutions.

Ask them to keep the funding for the Independent Living Program in the American Recovery and Reinvestment Act.

Ask for the legislative aide handling the Economic Recovery package and tell them about your state and the services CILs provide.

Both the House and Senate are currently in conference to reconcile the differences between the two bills. Call the Conference Committee today and stress the importance of Independent Living!

For more information: Contact NCIL Policy Analyst Elizabeth Leef by email, Elizabeth@ncil.org, phone: (202) 207-0334, ext 1015 or fax: (202) 207-0341.

Stimulus Update: IL, VR, and IDEA Funding Survives ... but Advocacy Still Needed!

2009-02-09T13:04:00.004-05:00

Good news! The Senate stimulus bill currently on the table, with the Nelson-Collins Amendment (the compromise everyone is talking about) now DOES include funding for Independent Living, Vocational Rehabilitation, and IDEA (special education). This is a result of our advocacy, no doubt about it!

Still, the Senate hasn't actually passed the bill, and if it does, it will still have to be reconciled with the House bill. All of our Members of Congress need to be reminded that although the $110 billion in funding for Independent Living Centers is listed under "Rehabilitation and Disability Research" in the House and Senate bills, the funding is NOT FOR RESEARCH.

You must communicate the following to your Senators and Representatives in order to secure this funding:

1. Independent Living Centers need employees. We can make immediate hires. Centers work with people with disabilities to help them become employed, and provide the support needed so that people are job ready and can find good jobs that are sustainable.

2. Centers help people to remain independent in their own homes and communities, and help prevent people from being institutionalized. From 2004-2006 Independent Living Centers transitioned over 8,000 people from nursing homes and institutions into the community, saving state and federal government well over $160 million. Centers help ease the financial burden that states have to bear on institutional expenses by keeping people OUT of institutions.

3. Ask them to keep the funding for the Independent Living Program in the American Recovery and Reinvestment Act.

Ask for the legislative aide handling the Economic Recovery package and tell them about your state and the services CILs provide.

Both the House and Senate will have to go to conference to reconcile the differences between the two bills. Call your Representative and Senators to ensure members who may be in the Conference Committee understand the importance of Independent Living! Text of the bills is available at http://thomas.loc.gov/.

Click the links below to send e-mails, or call the numbers indicated:

Sen. Charles Schumer - 202-224=6542
Sen. Kirsten Gillibrand (Sen. Gillibrand doesn't seem to have an e-mail link set up yet) - 202-224-4451
Rep. John McHugh - 202-225-4611

For more information: Contact NCIL Policy Analyst Elizabeth Leef by email, Elizabeth@ncil.org, phone: (202) 207-0334, ext 1015 or fax: (202) 207-0341.

What is the “Economic Stimulus Bill”, and what does it mean for people with disabilities

2009-02-08T15:02:00.008-05:00

This is not the annual budget they are discussing. “Stimulus” is funding above and beyond regular funding, passed specifically to “jump start” the stalled economy. Most economists say that the best kind of economic stimulus is funding for projects that require lots of public and private sector labor, generate a lot of purchasing, and can be started very quickly ... in a few months rather than a few years. The faster construction can begin, the sooner supplies are bought, the faster people are hired, the better. Money invested in projects with lots of employees and lots of supply needs gets spread around the economy fairly quickly, as employees buy lunches, groceries, clothes, cars, etc., and the companies they work for order supplies from other companies. Note that this works not just for construction and road repairs, but for programs that take place in offices, too. Instead of cement, we buy paper, software, computers, etc.

Others argue that instead, the government should give large tax cuts and rebates directly to citizens. However, there is quite a bit of evidence that individuals won’t use tax cuts and rebates to spend, but will use some or much of the money to save or pay off debts. While this is good for individuals, it doesn’t do much to help the economy, so the benefit to individuals would be short-term. You buy a DVD player, or maybe cut your credit card debt in half, but a year later the economy might be just as bad. Parties and economists disagree mainly on how much spending there should be, what it should be for, and how much of the bill should be different kinds of Federal tax cuts.

The House of Representatives has already passed the American Recovery and Reinvestment Act, a $900+ billion stimulus bill. No Republicans voted in favor of it. The bill included $110 million in extra funding for Independent Living, $500 million extra funding for vocational rehabilitation, and $13.5 billion additional funding of state and local special education (IDEA) costs.

There are over 600 Independent Living Centers in the United States, so in theory, individual Centers could get something in the neighborhood of $100,000 or more, depending on how the funding would be distributed among the Centers.

The Senate is currently working on its own stimulus bill, and may pass it Monday or Tuesday. By late last week, it seemed likely that a Senate bill similar in size to the the House bill might not get enough votes to pass and be safe from a Republican filibuster. The Democrats in the Senate don’t have enough votes for this on their own, and in any case, several Democratic Senator have reservations about the “full-sized” bill.

Over the weekend, these “moderate” Democrats and some “moderate” Republicans worked on a compromise bill which, if passed, would cut about $86 billion from the bill. What they are saying is that they are cutting spending for programs that ... though possibly valuable ... won’t quickly generate economic activity and create jobs, which is the main purpose of an economic stimulus bill.

As of Friday afternoon, the “Nelson-Collins amendment” would strike all additional stimulus funding for Vocational Rehabilitation and IL ($610 million - $500 million for VR and $110 million for IL) and cut by 50% funding for IDEA (from $13.5 billion to $6.750 billion).

There is still a chance to pass a Senate bill that includes Voc. Rehab., IL, and IDEA funding. Also, the House and Senate bills will have to be reconciled in the Conference Committee, which is another opportunity to keep or restore this funding.

It seems likely that Senators and Representatives might think that these expenditures are worthy but not stimulus. We know that plenty of people in Congress have only a vague understanding of what we do and how we do it. Yet, there are strong arguments that funding of IL, VR, and IDEA would make very effective economic stimulus. People with disabilities use services provided through "Vocational Rehabilitation" funding to live as independently as possible. We urgently need the additional funding that was included in the original House and Senate versions of the American Recovery and Reinvestment Act. Here's why:

--Independent Living Centers that receive additional money will use that money to hire more staff. That’s mainly what we do with our money ... we hire staff who help consumers. The bonus is that we tend to hire people with disabilities, many of whom are less likely to benefit from other stimulus hiring like construction, road work, and the like.

--Vocational Rehabilitation funding can be used to help people with disabilities train for work, go to college, buy books and computers, modify vehicles, etc. VR is starving right now because states are cutting their budgets. Federal money would help interrupt the “downward spiral” that results when lowering state revenues lead to job cuts, which lead to more lowering revenues.

--The same concept applies in IDEA funding. Now would be an excellent time for schools to get some major help paying for the expenses of educating students with disabilities. Even if the Federal funding goes down again in better times, for now, it would be one less thing states and local districts would have to think about cutting.

Our message to Congress is that:

1. Vocational Rehabilitation funding in the stimulus bill IS economic stimulus.

2. Independent Living Centers can hire new staff right away, as soon as we receive additional funding. And we hire lots of people who have a hard time getting other stimulus-related jobs.

3. After hiring new staff, most ILCs are likely to replace old equipment and make improvements to offices ... both of which provide more stimulus to local economies.

Contact:

Senator Charles Schumer
Senator Kirsten Gillibrand
Representative John McHugh

Action Alert on SSI Cuts

2009-02-03T10:17:00.003-05:00

Tell the Governor and Legislative Leaders NO on SSI cuts! Use the link below to send faxes to state leaders. You can read the action alert from January 14th below for additional details.

Click Here to say NO to SSI cuts

Action Alert: Ask Governor Paterson to Rescind SSI Cuts

2009-01-14T17:03:00.001-05:00

Governor Paterson is making changes to his budget this week. Advocates have had a meeting this Monday with the Governor's staff - but they need your help! Urge the Governor to rescind his proposal to cut critical SSI benefits to vulnerable New Yorkers!

CALL THE GOVERNOR'S PUBLIC LINE AT 518-474-8390. Urge the Governor to rescind cuts to SSI.

Background Summary:

The proposed Executive Budget for 2009-2010 does NOT preserve the safety net for SSI beneficiaries. Although there has been no increase in the state supplement for 20 years, this year, Governor Paterson is proposing to cut the state supplement to SSI payments for New Yorkers who are aged, blind or have a disability by over 25% for individuals and couples living alone in the community and 45-70% for those living with others.

In June 2009, the monthly state supplement would be reduced:

- for individuals living in the community: from $87 to $63
- for couples: from $104 to $77
- for individuals living with others: from $23 to $7
- for couples living with others: from $46 to $25

Despite the expected cost of living increase to the federal benefit, individuals who depend on their SSI income in order to pay their rent or buy their groceries cannot afford the proposed cuts to state benefits. Now more than ever we need to preserve the safety net for SSI beneficiaries.

One Man's Approach to Accessibility

2009-01-08T15:15:00.003-05:00

This article in the L.A. Times illustrates an aggressive approach to advocating for better accessibility in neighborhood businesses and public accommodations. This approach isn't for everyone, and a more helpful, diplomatic approach can also be effective. However, accessibility laws and building codes aren't new; the ADA became law in 1990. There's little reason why most businesses currently operating should still be out of reach for customers with disabilities.

How do you deal with businesses and other facilities that aren't accessible? What do you think we should be doing to make our community more accessible?

New Article on Service Animals

2008-12-31T13:51:00.004-05:00

The New York Times Magazine has published "Creature Comforts", an in-depth look at new and innovative ways that trained animals are helping people with different kinds of disabilities.

It's a car ... it's a wheelchair ...

2008-12-14T18:46:00.002-05:00

Kyle and A.J. of "Atypical View" discuss the differences, in design and cost, between a small car and a big wheelchair:

Atypical View - "My Wheelchair is a Concept Car"

Question of the Month: Explain Yourself!

2008-12-11T11:32:00.000-05:00

One of the most essential adaptive skills people with disabilities need in order to live successfully is the ability to explain their disability to others, briefly and in a way that puts people at ease. On the other hand, one of the most irritating things about having a disability ... sometimes it is downright traumatic ... is when perfect strangers ask or find out about all sorts of personal information about you. Put another way, in order to gain others understanding, assistance, and cooperation, we need to reveal more about ourselves than we would like.

So, how do you strike a balance between communicating our needs and protecting our privacy?

National Call-In Day for Quality, Affordable Health Care

2008-10-22T08:57:00.002-04:00

As this year's election season enters its final two weeks, it's particularly critical that we make our voices heard, so that whoever is elected to Congress and the Presidency understands that a fix of our broken health care system should be at the top of their agenda in 2009!

On Wednesday, October 22nd, thousands of Americans will be calling their member of Congress and Senators to deliver the simple but powerful message that we need quality, affordable health care for all, not the complicated bureaucratic market run by private insurance companies that we have now. The effort is being coordinated by Health Care for America Now (HCAN), the largest campaign for health care for all in the nation.

Action:

**On Wednesday, October 22, 2008, call 1-888-436-8427 (toll-free)
You will be prompted to give your zip code and be provided with a short message to deliver to your member of Congress or Senator.

Make three calls; call Senators Clinton and Schumer and Congressman McHugh! Say the following: "We need quality, affordable health care for all"

Accessible Voting

2008-10-09T11:00:00.004-04:00

"So, why should voters with disabilities go to their polling sites this November?

Did you know with the passage of the Help America Vote Act every polling site must be accessible to people with disabilities and each polling site must have at least one accessible voting device?

Did you know some counties may not count their absentee ballot for days or even weeks after an election?

For more information call your local Board of Elections. Remember…we all HAVA vote!

Sponsored by Catskill Center for Independence/Project HAVA and the CQCAPD."

Listen to the PSA here

Don't forget to register!

2008-10-06T12:47:00.002-04:00

The deadline for voter registration in New York is this Friday, October 10. If you want to vote but aren't sure whether you are registered or how to do it, Google Maps has an online tool to help you. All you need to do is type in your street address and Zip Code.

Disability Activists Build 'DUH City' in Washington DC

2008-09-16T09:34:00.006-04:00

At approximately 4:30 AM on Monday, September 15th, hundreds of disability rights activists from across the country took over the plaza in front of the US Department of Housing and Urban Development (HUD). The activists, from a grassroots organization called ADAPT, are targeting HUD with this `tent city' action because people with disabilities are in a housing crisis. There simply is not enough housing that is accessible, affordable, and integrated for people with disabilities.

ADAPT activists have taken this message to the Democrats and Republicans. Eleven ADAPTers were arrested Monday afternoon at the National campaign headquarters of Senator John McCain.

Take Action In Support of ADAPT

DUH City Web Site

A New York Activist and Resident of DUH City Blog Article

Stay Tuned with ADAPT on "Twitter"

People with Disabilities Treated Like Second Class Citizens ... Again

2008-09-02T13:44:00.005-04:00

By Helen Benlisa, Project HAVA Coordinator, Catskill Center for Independence

With one of the most exciting and historic Presidential Elections on the horizon, voters may be turning out in record numbers. But New York voters who use one of the new accessible voting machines, a ballot marking device (BMD), might have to wait until days later to have their votes counted.

It seems New York State Board of Elections (NYSBOE) reached an impasse over how to count ballots filled out with a BMD. Initially, the procedures developed by NYSBOE had BMD ballots counted at the polling site directly after the close of polls. Commissioner Douglas A. Kellner, NYSBOE Co-Chair recently reported,

“Todd Valentine, the Republican co-executive director of the NYS Board of Elections, sent … revisions that he insists must be adopted for the BMD procedures. Most significantly, he is proposing to change Paragraph 4(b) to eliminate counting BMD ballots in the same manner as emergency ballots.”

(Emergency paper ballots are used in the event of a lever machine breakdown and are counted directly after the close of polls.)

Instead Mr. Valentine proposes:

The ballot generated by the ballot marking device shall be placed in the ballot box for the voter’s election district. Alternatively, county boards may determine to provide for a single ballot box for all ballots generated by the ballot marking device. Upon the close of the polls, the ballot box shall be delivered to the County Board and the ballots then canvassed in the same manner and together with other paper ballots for the election district in order to maximize the privacy of the voter’s vote.

Why would there be a need for separate boxes? A vote is a vote is a vote, is it not? His claim this particular step will "maximize the privacy of the voter's vote" is absurd given this instruction in the same set of procedures:

In order to ensure the privacy of the ballots cast by voters with disabilities, county boards shall take steps to encourage the use of accessible voting devices, and ensure that any registered voter who wishes to use the device may do so.

It is no secret New York lags behind other states when it comes to full implementation of the Help America Vote Act (HAVA) and it has taken much gnashing of teeth, rending of cloth and eleventh hour court orders to get us this far. HAVA calls for equal access, full inclusion, privacy and independence for every voter in this country. While there might be some understandable delays in manufacturing or certifying machines, challenges to overcome with implementing a multifaceted statewide database, and many-layered logistics to contend with, it is beyond shameful how the spirit of the law has been, time and again, by-passed and disregarded.

The issue of privacy espoused in HAVA encompasses more than simply the counting of ballots, as Mr. Valentine’s interpretation postulates. It is also the act of voting without anyone else having to read names, move levers, or check boxes. It means every voter, regardless of range of mobility, degree of sight, or breadth of any other human capacity, can exercise a civil right and duty with dignity. It means all voters can expect those officials who administer elections actively support this civil right with integrity and consummate accord.

By this latest recant, the disability community is again made responsible for policing NYSBOE actions, again put in the ridiculous position of fighting for what is just and sensible and sane.

The message that continues to be sent by the NYSBOE is “votes cast by people with disabilities are less important than those votes cast by the non-disabled public”. How much longer must people with disabilities be treated like second class citizens?

Helen Benlisa is the Project HAVA Coordinator at the Catskill Center for Independence (CCFI) in Oneonta, New York serving 52 Upstate New York counties.

For more information on HAVA implementation in New York contact Project HAVA at CCFI 607-432-8000 or 1-888-NYS-HAVA. Visit our website www.ccfi.us for more HAVA-related articles.

Gov. Patterson at the Democratic Convention

2008-08-31T09:24:00.003-04:00

Michael Gromley of the Associated Press wrote an article on Gov. Patterson's address to the Democratic National Convention. In his speech, he discussed economics, but also the high unemployment rate for people with disabilities. Click here for a transcript of the speech, and a link to video.

Action Alert: Stop More Cuts to Independent Living Centers and Home Care!

2008-08-13T14:31:00.007-04:00

Despite the fact that Independent Living Centers and home care are critical services for the disability community in New York State, Governor Paterson has proposed serious cuts to these vital, cost-effective services.

The Governor has proposed immediately cutting Independent Living Centers by 6% on "remaining disbursements" this year. His proposal then carries over this cut into FY 2009 and beyond. These Centers were already cut by 2% this year so this cut would be on top of the original cut to ILC funding in the enacted FY 2008 state budget. That means the Governor has proposed reducing on-going Center funding by 8%!

The Governor is proposing to cut home care by eliminating the "trend factor" and cutting an additional 1% from reimbursement rates. Because this year's home care rates are based on actual expenses from two years ago, the trend factor is critical to adjusting these rates for the increased cost of doing business, including attendant wages and benefits. These cuts will significantly affect the ability of home care agencies to pay for wage increases and handle the ever-increasing cost of providing benefits, including health insurance, potentially forcing good attendants to look for other work.

Take Action!

Step 1: Click HERE to send a fax message to the Governor and other state officials asking them not to make these cuts.

Step 2: Send a link of this site to your friends, family, and co-workers and ask them to take action.

Disability Travel Survey

2008-08-07T14:09:00.003-04:00

As part of the ongoing effort of the New York State Independent Living Council (NYSILC) Travel Subcommittee, they are conducting a Statewide Disability Travel Survey and would greatly appreciate your input! Your participation in this survey will assist us in documenting the travel trends and preferences of New Yorkers with disabilities. This information will be important to communicate to the travel industry to support the positive accommodations that have been made and encourage continued progress.

Click here to fill out the survey.

"Atypical View"

2008-07-27T12:25:00.004-04:00

I hope people have had a chance to watch some of the "Britain's Missing Top Model" videos. It continues to be a really interesting show exploring lots of familiar aspects of disability from a unique perspective. I'm posting links now to each episode on our web site. For a complete listing of episodes, click here.

There's an even better YouTube phenomenon I just found. A young man and young woman who both have disabilities are doing a "video blog" on disabilities, posted on YouTube. They call it "Atypical View". They are both very smart, insightful, and funny. Kyle has Cerebral Palsy, and A.J. has Spina Bifida. Kyle is a high school senior. A.J. is a college student. They live over 1,200 miles apart, so they use some kind of videoconferencing to make their video talk show. So far they've posted 23 videos. Most of them are 6 to 9 minutes long. They've managed to keep the show "safe" for minors, though they do discuss sex in a general way a couple of times. I'd feel pretty comfortable showing these to teens with disabilities, and I think they would get a lot out of it. For a complete listing of "Atypical View" clips, click here. Here, also, is one of Kyle and A.J.'s earlier clips:

Proposed New ADA Regulations

2008-07-24T13:22:00.004-04:00

The Department of Justice (DOJ) has released its proposed new ADA regulations and has given the public until August 18th to comment on them. These regulations would determine how DOJ enforces the ADA for the next few years and therefore it is very important that the disability community be involved in this process to make sure this is done right. Below is a guide to what is in the 1000 page proposed regulations to help you make comments. The guide was written by Frank Pennisi of the Southern Tier Independence Center.

Proposed New ADA Regs: Some Issues to Comment On
by Frank Pennisi

The Notice of Proposed Rulemaking (NPRM) can be viewed and or downloaded here.

This is decidedly not fireside reading! Although it is approximately 1000 pages, I would encourage people to read as much as possible before making comments. For those who cannot, the following are guidelines for some issues I feel are most important to comment on. For comic relief while poring through these, be sure to check out the definition of “existing facility” (p.34476) and a miniature golf association’s description of the miniature golfing experience (top of p. 34494)!

There is a lot of repetition here, because these proposed regs are covering both Title II and Title III. As an example, a golf course can be operated by either a public entity (a city or county) or a private company ( a public accommodation) and so the same language must be reiterated in different sections.

Anyone can comment on all or any part(s) of the NPRM. I only commented upon those sections that I deemed in need of comment, and those that I disagreed with. There were some areas where I have insufficient knowledge to offer useful comments; for example I don’t golf so I won’t be commenting on those sections, and since the only way anyone would ever get me into a boat is by drugging and binding me, I didn’t comment on boat piers, boat slips, gangways, etc. because I don’t know enough about it to offer anything intelligent. If you have interest, experience and knowledge in these areas, by all means check out these sections and offer comments. I read them all, and with my limited knowledge, they seemed reasonable, but there may be problems with them that I’m unable to pick up on.

Other sections I didn’t comment on because I thought they were well done. The enhanced definition and regs for interpreters were very good. The addition of Video Interpreting Services (VIS), which didn’t exist when ADA first passed, was also very good. The new regs for courtrooms and prisons I found to be reasonable and appropriate. I encourage people to read through these sections and decide for themselves.

I found the new definition of “wheelchair” to be very well thought out. There are several important questions on wheelchairs beginning on page 34480 which people should consider answering. They discuss the use of Segways and whether or not they should be considered as wheelchairs. Since I have never seen a Segway being used by a person with or without a disability, I don’t feel qualified to comment, but others who are familiar with these devices may want to.

One thing that is not mentioned here disturbs me greatly: whether or not web sites are considered “public accommodations.” There have been many court cases on this issue and most of them are deciding that web sites are not covered as public accommodations under the ADA. When ADA was passed, websites and online shopping were in their infancy and so were not addressed.

Although DOJ is on record as believing that websites are public accommodations and should be covered, they have not addressed that in these regs. I think it’s time they did, and will be submitting general comments to that effect. Until it’s in the regs, we are going to continue to have confusion and noncompliance and conflicting court decisions. What is DOJ waiting for?

One final word of warning: Appendix B: Initial Regulatory Assessment is almost totally incomprehensible, and since it is just a narrative about the Department’s cost-benefit analysis methodology, it doesn’t really warrant comment. Unless you really need to scramble your brain for some reason, skip it!

Title II – 28 CFR Parts 35 and 36
Subpart A—General
Section 35.104 Definitions
Federal Register page 34477

“Service Animal”

DOJ is proposing a much more restrictive defintion of service animal. For the most part this is very good and greatly needed, as there have been some truly bizarre abuses of this section by people claiming that, for example, boa constrictors and spiders were service animals. The new definition defines service animals as dogs or “other common domestic” animals “individually trained to do work or perform tasks for the benefit of an individual with a disability...”

Potential problems with this definition: they list acceptable and non-acceptable species of animals which can be considered service animals. On the list of non-acceptable species are horses and “non-human primates born in captivity.”

Miniature horses are becoming increasingly popular as guides for blind people. They are generally the same size as a typical guide dog, are equally trainable, and have an advantage over dogs in that they can live for 30-50 years, thus eliminating the need to continually obtain and train with a new dog. They are also preferable for blind people who may be severely allergic to dogs.

Many people who are quadriplegic use monkeys as service animals. The monkeys’ teeth and claws are removed before they are put into service. Although I am personally uncomfortable with the use of monkeys as service animals (they are, after all, highly intelligent but wild animals and I don’t trust them not to harm the person they’re serving if they take a mind to), I realize that they serve a valuable purpose for people who use them. I haven’t, however, ever encountered anyone who uses a monkey outside ot the home environment. The proposed regs do not govern what can be used in the home, but only which animals can be brought into public places.

At one point the regs suggest allowing people who currently use monkeys to continue using them in public, but to prevent any new use by people who do not currently use them. This is absurd and utterly unenforceable.

I think that both miniature horses and monkeys should be removed from the list of non-acceptable species for service animals.

Section 35.150 (b) (2) Safe Harbor (p.34485)

The concept of “safe harbor” is new. What it basically means is that any entity that has expended the time and expense to comply with existing ADAAG standards (referred to here as the 1991 standards) will be exempt from upgrading to the new proposed standards (referred to here as the 2004 standards), most of which are only incremental changes. Any entity that has not already complied with the existing standards would have to use the new standards. If an entity has complied with the old standards but is doing alterations, the alterations would have to comply with the new standards, but they would not have to retrofit the existing, unaltered part of the facility.

To me this seems entirely reasonable. I think it hurts our cause significantly if an entity makes itself accessible and then is told every few years that there are new standards and it has to do it all over again! I really wish that the Access Board and DOJ would take their time, do exhaustive research, and come up with one really good set of standards that address all disabilities and that would never need changing!

Others may have differing opinions on this. The most significant change in the standards, to my mind, is the change of an acceptable side reach from 54 inches down to 48 inches. This can make all the difference in the world for little people, many of whom cannot operate anything at 54 inches high. Those of us who follow these things closely have known for 10 years that this particular change was coming and have been advising facilities to put everything at 48 inches even though it wasn’t part of the standards, because we knew it was going to be. This is a change that should have been made when ADA regs were first written, as little people have been validly making the point for about 25 years, but unfortunately, it wasn’t.

To me, the potential “good will” benefits of “safe harbor” outweigh the problems, but those who disagree make good points as well. Either way, it is important to comment on this section whatever your opinion is.

On page 34486, Question 25, DOJ asks if there are state and local standards specifically regarding play and recreation area accessibility. If so, should the safe harbor concept extend to those play areas that comply with state and local access standards?

I would say no. The new standards are the first time play and recreation areas have been addressed. The ADA has always implied that such areas should be accessible, but until now has not delineated how to do it. I have never heard of any state or local standards for such areas. The impression I have gotten is that many such areas have wanted to provide access but have been waiting for the Access Board and DOJ to tell them how to do it.

The recreation access standards have been many, many years in the making and are the result of exhaustive research. They are good standards and should be adhered to.

Question 26 asks whether there should be a “tipping point” below which play areas would not have to adhere to the standards. DOJ is proposing that play areas of less than 1000 square feet be exempt from the standards.

I am vehemently opposed to this, I measured and marked out 1000 square feet, and it is not what I would consider a “small” play area. In the similar proposal under Title III (see below), DOJ estimated that 100% of play areas in restaurants, 60-80% of play areas in hotels and day care facilities, and 20% of play areas in schools are less than 1000 square feet. That seems to me to be an overly large percentage of the play areas a child is likely to encounter that would not have to be accessible. Question 27 also addresses this issue. I say “No Way!”

Question 29, on page 34487, asks whether existing play areas undergoing alterations should be allowed to substitute extra ground-level play components for the percentage of elevated play components required for new play areas. This seems reasonable to me, but bear in mind that I don’t have kids and don’t frequent play areas. Others may have differing valid opinions on this. Either way, it is important to express our opinions.

Question 30 asks whether it is okay for a public entity to make a “reasonable number, but at least one” of its swimming pools accessible. I think all pools an entity makes available should be accessible. It is neither difficult nor expensive to provide pool lifts.

Questions 31 and 32 address accessible means of access and egress in swimming pools. The proposed standards call for two means of entry for swimming pools. DOJ wants to know if only one means of entry would be acceptable for existing pools of more than 300 linear feet (perimeter), and if existing pools of less than 300 feet should be exempt from providing any accessible means of entry.

The two accessible means of entry seemed reasonable to me until I recently participated in a distance learning phone call on these standards. One caller noted that a ladder is now required in pools every 75 linear feet. If that is the case for nondisabled swimmers, then is only one means of entry acceptable for people with disabilites? I still haven’t decided.

As for exempting existing pools of less than 300 linear feet from providing any accessible means of entry, once again I say “No Way!” DOJ goes on to estimate that 90% of public high school pools, 40% of pools in public parks and community centers, and 30% of pools in public colleges and universities are less than 300 linear feet.

That’s an awful lot of pools to exempt! Again, pool lifts are neither expensive nor difficult to install.

The next section discusses sloped entries into wading pools and whether or not this should be required. Personally, I have never seen a wading pool anywhere that did not already have a sloped entry, so I won’t be commenting on this section. Of course, if such pools exist, they should have some accessible means of entry.

Section 35.151 (e) Social Service Establishments and Section 35.151 (f) Housing at a Place of Education (pp.34490-92)

This section discusses residential facility requirements (new) and transient lodging requirements. They are proposing to apply the residential facility requirements to social service establishments which provide temporary housing, but the transient lodging requirements to college dorms, This distinction seems reasonable to me, but this is a rather complicated issue and people need to read it themselves and make their own recommendations.

Sections 35.171, 35.172 and 35.190 Streamlining Complaint Investigations and Designated Agency Authority (p.34499)

Current ADA regs state that DOJ or the designated agency “shall investigate each complete complaint” alleging a violation of Title II and shall “attempt informal resolution” of such complaint. They go on to bemoan the fact that they have received many more complaints than their resources permit them to resolve. They propose to change the regs to delete the word “each” so that it would read “the designated agency shall investigate complaints” rather than “investigate each complaint.”

I am utterly opposed to this. The biggest problem with the ADA over the last 18 years is that it lacks “teeth.” Enforcement is very hard or impossible to come by. Now they are proposing to lessen the little bit of enforcement we have?? Oppose this change!

Title III – 28 CFR Part 36
Federal Register Pages 34513-4

This part discusses Assistive Listening Systems (ALS). I was stunned to learn in this section that not all receivers in ALS systems are hearing aid compatible! This is ludicrous. DOJ is proposing that 25% of all receivers used with ALS be hearing aid compatible. I say it should be 100%. After all, who uses ALS but hard-of-hearing people, who are most likely to also be using hearing aids?! The fact that they even manufacture non-hearing aid compatible ALS receivers boggles the mind!

On page 34515, they again discuss exempting play areas of less than 1000 square feet from the new access standards (this is under Title III; the last time it was mentioned was under Title II). Once again, I would say absolutely not! Similarly, on the next page they reiterate the proposed new language regarding service animals. My earlier comments apply here as well. Specific questions regarding service animals begin on page 34520. These are worth reading and commenting on.

Section 36.302 (e) Hotel Reservations (pp.34524-5)

We’ve all had experiences or heard stories about people who made hotel reservations for an accessible room only to arrive at the hotel to find that an inaccessible room has been held for them ro that the “accessible” room is in fact hardly accessible at all. This section seems to lay down some good ground rules for resolving such problems, but should be commented on anyway.

Section 36.302 (f) Ticketing (p.34526)

This section seems to adequately address ticket sales but raises many pertinent questions which should be answered. Some of these questions have no easy answers. They are proposing, for example, to increase the number of companion seats for each wheelchair seat in assembly areas from one to three. The reasoning is that people who use wheelchairs often attend an event with more than one companion (for example, a wheelchair-user father who brings his wife and two children to an event) and they should be allowed to sit together. Does this policy, however, unfairly cut into the amount of other accessible seating? How do you balance one person’s right to sit with their family against another person’s right to accessible seating? A sticky question that I’m not yet sure how I will comment on. Please read it and make up your own mind.

Captioning at movie theaters and Narrative description (pp.34530-1)

It is important to read and comment on the questions in this section. DOJ is looking to provide a time frame to require captioning and narrative description of movies. Apparently the movie industry is in the process of moving from film to digital format, and in digital format it is simple to burn the captioning and narrative description right into each print of the movie. This might be the best way to set deadlines for universal captioning and narrative description. I still haven’t decided.

Captioning at sporting venues (pp.34531-2)

DOJ is proposing that sports stadiums with a capacity of 25,000 or more provide captioning for safety and emergency information announcements. They are considering exempting smaller arenas because of the potential for creating an undue burden for such venues.

I am much more concerned about the undue burden placed on Deaf people who remain in their seats at a smaller venue, unaware that a tornado is heading that way because the venue didn’t caption an emergency announcement. I say all stadiums, regardless of size, should have emergency captioning such as on a scoreboard, line board or other methods.

Pages 34532-3 once again discuss the issue of “safe harbor” and make some very good points on both sides of the argument.

Pages 34533-4 discuss maximum side reach ranges and their relation to the safe harbor. The 1991 standards allowed a side reach range of 54 inches, whereas the new standards lower this to 48 inches. Some have proposed things such as light switch extension handles for those entities who have complied with the 1991 standards, to provide accessibility without having to retrofit once more. Comments are needed here!

Starting on page 34535, play areas are discussed once again. This time DOJ asks specific questions. I think it’s important to reiterate our thoughts every time the subject comes up! Do not exempt play areas of less than 1000 square feet!

Starting on page 34536, they discuss swimming pools again. See above.

Safe harbor for qualified small businesses regarding what is readily achievable. (p.34538-9)

I still can’t quite figure out what to make of this one. Both advocates and businesses have been requesting specific guidance on what constitutes readily achievable barrier removal. DOJ is proposing that if a small business spends 1 % of their gross revenue for a year on barrier removal, they satisfy the requirement to do what is “readily achievable” for that year. The next year it starts all over again.

Do we really want to go through a year-by-year process to make a business accessible? On the other hand, is it better than what we’ve had---where a court eventually decides if the business did what was “readily achievable?” DOJ poses a lot of questions here. Please read carefully and make up your own mind!

Page 34542-3 Effective date: time period.

This section discusses what should be the effective date for new compliance with the new standards for new construction. While I would have preferred immediately after the standards are adopted, that is not one of the choices offered. With the choices being six months, twelve months and eighteen months after the standards are adopted, I believe that DOJ made the right choice by opting for six months. Their reasons for doing so, however, could be just as effectively used to argue for an immediate effective date!

Appendix A
208 and 502 Parking Spaces
General. (my pages 12-13 when downloaded and printed)

They are proposing to allow a parking lot with four or fewer spaces not to post a sign at its one accessible space. This is ridiculous. How is anyone to know it’s an accessible space if it’s not marked? I don’t understand their reasoning at all and I am opposed to this provision.

Election 2008 Action Alert! Urge McCain, Obama to Participate in Presdidential Candidate Forum in Ohio

2008-07-11T11:00:00.005-04:00

The American Association of People with Disabilities and other disability groups are urging the Presidential candidates to attend a forum in Ohio on July 26th, the anniverasy of the ADA. Click here to send the candidates a message urging them to participate in this event.

Leave it to the Brits!

2008-07-08T12:24:00.001-04:00

I just watched, on YouTube, the first episode of the new BBC television series, Britain's Missing Top Model. It's an "America's Next Top Model" format amateur modeling competition for women with disabilities. The women are lovely and have a variety of disabilities, including paraplegia, amputation, deafness, traumatic brain injury, and one model who has a combination of conditions that although much less visible than some of the others' disabilities, probably is the most difficult to deal with day to day. The show really explores disability image and prejudice issues in a very knowledgeable and unsentimental way. This could so easily have been an exploitative or tear-jerking program. Tears are shed, but the overall tone of the show is that life is to be gotten on with, and disabilities are mainly a matter of practical barriers to be overcome with determination and above all good humor and creativity. I am trying to imagine a show like this being done this well on American TV, and I'm forced to admit I just don't see it happening.

Here is the first part of the first episode:

Click these links for the rest of the first episode:

Part Two
Part Three
Part Four
Part Five

Note: This is British network television, not American. Expect some harsh language you'd only hear on cable channels in the U.S. after 10 PM. Also, there will apparently be some nudity in upcoming episodes, though not in this one.

Keeping Tabs On Governor Patterson

2008-07-03T14:27:00.003-04:00

Keeping tabs on Governor Patterson is as easy as visiting his website. There you will find all kinds of information from speeches, press releases, and events. The material is updated dailly and is a great resource to tracking the issues that concern you the most. Since taking over as governor, Patterson has had the governor's website altered so that it is fully accessible, if you find this not to be the case, drop him an e-mail.

Governor Patterson Website

Free Our People!

2008-06-24T11:17:00.006-04:00

The battle to get people with disabilities out of unwanted institutional facilities such as nursing homes has been going on for decades. The turning point of this battle occurred in 1999 when the US Supreme Court in a landmark decision called the Olmstead decision, declared that the use of institutional care as the primary focus of medicaid spending amounted to segregation and is unconstitutional. The high court ordered the states to come up with a plan to end the institutional bias and provide choices including community home based care. The battle then moved to the states where New York has once again shown itself to be resistant to reform and change that benefits its people.

After many years of fighting, the Nursing Facility Transition and Diversion Medicaid Waiver was finally passed in 2004. This waiver would give thousands of New Yorkers a chance to get out of nursing homes or avoid placement by providing the option of communtiy home based services. However, full implementation of services has been delayed for nearly four years now due to a slow approval process by the federal government, and then further delays in implementation by the New York Department of Health. Overcoming these delays, at last one final obstacle remained. The New York Office of Budget had delayed for months the release of funding rates that are needed by participating agencies. This final hurdle was overcome yesterday when the stalwart actions of ADAPT Rochester moved the Office of Budget to finally release the needed rates. The radical advocates of ADAPT and their successes speak louder than words about the power of commitment) went to Albany on Monday, March 23rd and confronted the powers that be to stop delaying. Their direct action was the final push needed to finally free our people from unwanted institutional placement. I say radical with the utmost respect, as these incredible ADAPT advocates are willing to face incredible hardship, discomfort, and even arrest to push forward the causes of people with disabilities. Click here to read the account of a particiapnt of this successful ADAPT action.

The Press-Republican endorses "Visitability"

2008-06-22T15:57:00.002-04:00

The editorial in the June 20th Press-Republican endorsed the "Visitability" bills now being debated in the New York State Assembly and Senate. For more information on this issue, go to this post from earlier this month.

So, What Does The USDA Have to Offer?

2008-06-19T08:17:00.006-04:00

Last week I attended a Lunch & Learn at which a representative of the USDA's (Department of Agriculture) Rural Development division was the guest speaker. I was amazed to learn of the number of different programs that the department runs for senior citizens and people with disabilities. Probably the most well known program they run is the senior housing complexes, usually run by HUD in the cities in rural areas its overseen by the USDA. And the USDA offers grants and loans to help seniors and people with disabilities buy their own houses or make needed repairs or modifications to their existing houses, all at favorable interest rates and subsidized based on income. You can learn more about what's available at the USDA website by clicking here.

Update on Iowa ILCs

2008-06-16T14:50:00.004-04:00

We just received this e-mail update from Dawn Francis, Executive Director of the Iowa State Independent Living Council.

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Dear IL Friends in Iowa and Across the Nation,

First, I want to again thank all of you who have sent e-mails offering your prayers, encouragement, and both financial and in-kind donation support for our Iowa Centers for Independent Living. I have passed this information on to the Centers whose offices have been or may be affected by the floods, and I know all the Executive Directors, staff, and Board Members greatly appreciate all of your support!

The Iowa SILC office was NOT affected by flooding as the levees in downtown Des Moines held, so that is a blessing!

Right now I am asking all of you to please hold off on your e-mails and calls to me for a few days until the Centers are able to assess their needs. As you all know the office of the Black Hawk CIL in Waterloo is a total loss. They were not located on a flood plane so were not allowed to purchase flood insurance, so everything in their office was lost. They may have already found a new location to move into, and they are also working with FEMA. Their current building, where they were renting, is being condemned today as a total loss. They want to first see what FEMA can help with, and then assess what other needs they have to get back up and running so that we can let all of you know. The Center was able to work with the local bus company, and that local company is temporarily picking up some of the routes that the Center was providing for people with disabilities and low income folks regarding transportation for work, doctor appointments, shopping, etc. The Center will again take over these routes once they get their two vans replaced that were lost in the flooding.

At this time we do not know the status of the office in Iowa City, as flooding continues there and the streets near the Center are blocked off. I did receive an e-mail from someone in Iowa City that is a friend of the CIL who said they think the Center office is NOT flooded, but we will probably not know for sure for a few days. Many buildings at the University of Iowa are surrounded by flood waters, and only essential personnel are to report to work. The University has officially closed down for at least a week.

In regard to Cedar Rapids, there has been MASSIVE flooding. Cedar Rapids is the second largest city in Iowa, second only to Des Moines. Hundreds of downtown streets are underwater, and they are estimating at least 20,000 people are homeless as a result of the flooding in Cedar Rapids. There is not a Center office in Cedar Rapids. It is a satellite of the Evert Conner CIL in Iowa City, and right now they only have one part time staff serving that community and they work out of their home. He is safe and not in any of the flooding, and was able to place 4 consumer partners who were affected by the flood waters into appropriate shelters in the area. One consumer partner had to be moved temporarily to a nursing home as his needs were too great for the shelter to handle. However, the IL staff person is working closely with this consumer partner and will make sure he is moved back into his apartment as soon as power is turned back on in his building. The building was not flooded, but power was out which is why he had to initially move to a shelter.

The Conner Center in Iowa City was in the process of searching, interviewing, and hiring additional staff when the floods hit, one of which was an additional staff person for Cedar Rapids. Right now they cannot get into their office, so it may be a while before they can resume this interviewing and hiring process.

Here are some links to Iowa TV and newspaper websites that have some amazing pictures of the flooding, particularly in Cedar Rapids and Iowa City:

http://www.kcci.com/index.html

http://www.gazetteonline.com/

Again, please give us several days to assess the needs here, and we will get back with all of you as soon as we can.

Thanks!

-Dawn

Dawn E. Francis
Executive Director
Iowa Statewide Independent Living Council
300 East Locust, Suite 330
Des Moines, Iowa 50309
Office: 515-282-0275 Toll-Free Office: 1-877-466-7442
Fax: 515-282-0278 Toll-Free Fax: 1-877-771-0779
TTY: 515-282-3902 Toll-Free TTY: 1-977-469-0623
E-Mail: dawn@iowasilc.org Website: www.iowasilc.org

Iowa Independent Living Centers Report on Floods

2008-06-13T18:38:00.004-04:00

We received this e-mail today concerning what ILCs in Iowa are dealing with due to the devastating floods of this week:

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Dear IL Friends in Iowa and Across the Nation,

As you all know, Iowa is being hit very hard with flood waters. The office of the Black Hawk Center for Independent Living, located in Waterloo, Iowa, has been totally lost to flood waters. The office is NOT located on a flood plain. The staff had pulled things out of the basement, and put computers and records up on desk tops, never imagining that water would even come near the top of the desks.

Needless to say, the water DID come in and up over the desk tops. The Executive Director was able to recover their server from the office, although it is wet and may be damaged. His computer experts have told him to let it dry out for a few days and they are hopeful they can retrieve the Center’s consumer records at that time.

FEMA is not allowing staff to remove anything else from the office, so all their computers, desks, file cabinets, and other supplies are totally lost, and still under water.

Since the Center was not located on a flood plain, they were not allowed to purchase flood insurance. Since there is no flood insurance, all of the contents lost in the office are not covered by any insurance.

In addition, the Center operates a transportation program for people with disabilities and other low income folks. They had three vans, and two were destroyed by the flood waters. The one remaining van is being used only to transport emergency dialysis patients. The other two vans that were lost should be covered by the auto insurance. However, they are ACCESSIBLE vans so we all know it may take a while to get them replaced as there are not a lot of accessible vans just waiting to be purchased from a car dealer lot.

Cedar Rapids, Iowa, was also hit very hard, with 100 blocks of downtown Cedar Rapids now under water. The Evert Conner Center in Iowa City serves Cedar Rapids, but they do not have an actual office in Cedar Rapids. The staff person who serves Cedar Rapids does so from his own home. He currently has several consumers that did have to go to shelters, while a number of others live outside of the flooding area so they did not need assistance in regard to the flooding at this time.

The Conner Center in Iowa City has flood waters just down the street from their office. They are also not on a flood plain, but are on the 2nd floor of a building that is up the hill from these flood waters. The ED and staff there are working to take precautions for possible flooding.

The SILC office is 2 blocks from the river, and right now the river is very close to going over top of the downtown bridges. The city insists the new flood walls will hold, but my office has been sandbagged for the last four days. The SILC office is on the 3rd floor of the building, so the flood waters will not get that high, but if they come into the building we will not be able to get into the building.

I have spoken several times today with the FEMA National Disability Coordinator, Cindy Daniels, to let her know the situation to date. She will be in contact with the FEMA folks in Waterloo to see what they can do to help the Waterloo CIL get set up in a new location to serve people.

As far as the SILC and the Centers can tell, people with disabilities are being appropriately served in shelters if they need to access a shelter. We will do our best to keep on top of this to ensure needs are being met.

I will keep you all posted as I get new information. Please keep Iowa in your thoughts and prayers.

-Dawn

Dawn E. Francis
Executive Director
Iowa Statewide Independent Living Council
300 East Locust, Suite 330
Des Moines, Iowa 50309
Office: 515-282-0275 Toll-Free Office: 1-877-466-7442
Fax: 515-282-0278 Toll-Free Fax: 1-877-771-0779
TTY: 515-282-3902 Toll-Free TTY: 1-977-469-0623
E-Mail: mailto:dawn@iowasilc.org, Website: www.iowasilc.org

Is The Federal Government Setting A Good Example for Employers?

2008-06-10T14:08:00.005-04:00

The Federal government employs more than 2 million employees across the world, this doesn't count military personnel. And yet less than 1% of the federal governments employees are people with disabilities. Considering that there are an estimated 50 million people with disabilities, a substantial minority group, the federal government is woefully under employing disabled people compared to other minority groups. This data just feeds the concerns that many people with disabilities have that the government isn't working hard enough or fast enough to implement the ADA. Low employment rates for people with disabilities in federal government jobs is a continued sign that the feds are only tepidly interested in moving our full civil rights forward. The government's failure to fully enforce all provisions of the ADA as they would with any other law is just another sign along this continuum of shirking responsibility. The federal government must lead by example, it must hire a greater number of people with disabilities. The federal government has the ability to alieviate the large unemployment rates that people with disabilities suffer from but they must do more to hire them and by so doing encouraging other employers to do likewise.

The National Council on Independent Living has sent a letter to Chairman Waxman of the Ways and Governmental Reform Committee asking him to investigate the federal governments failure to hire people with disabilities. You can read the letter and sign on to it at the following web address

Letter to Congressman Waxman

White Cane Day in Malone

2008-06-07T08:46:00.002-04:00

A Press-Republican reporter describes how she felt crossing a street blindfolded, with a guide and a white cane.

The Time For 'Visitability" Is Now!

2008-06-04T14:31:00.009-04:00

Here's an issue that makes so much sense that it is dumbfounding that it isn't an automatic thing. No, instead we need to fight for years to get it passed in the legislature. Visitability is simply building a structure right from the design point that is either accessible (using ADA standards) or can easily be modified for accessibility later on. For instance, all structures should have all doorways built to the 36' specification right from the start. Its silly not to do this, I mean we are all aging and at some point no matter how good our health, the chances are that we'll develope some kind of impairment. And there's nothing worse then having to leave a family member or friend out of a get-together because they can't navigate their way through your house or apartment. Just put the basics into the building codes and we'll be helping ourselves without putting a costly burden in the original construction, its when you have to tear the house up to make it accessible that the costs get prohibitive and sometimes land people in nursing homes because their houses aren't habitable for them.

Please help us with this by following the link below and following the instructions. The NYS Senate has been moving this bill from committee to committee, probably hoping we'll lose track of it.

Click here to send your message for the Visitability.

Here is some basic information on this issue:

"Visitability" is a movement to change home construction practices so that new homes offer specific features that would make it easier for people with a mobility impairment to occupy and visit. The spirit of "Visitability" is the belief that it is unacceptable that new homes continue to be built with gross barriers, given the ease and low cost of building basic access into the majority of new homes and the harsh effects major barriers have on people's lives, including physically unsafe conditions, social isolation and unwanted institutionalization. Visitability requires only those accessibility features needed to allow a person with a mobility impairment to comfortably visit a home, not the full range of features that make a building "accessible."

The purpose of this bill is to establish minimum regulations for the design and construction of new single family homes, townhouses or the ground unit of a building with three or less units. This bill only affects new homes that are built using state or federal funds and subsidies.

The bill establishes minimum standards in every home for accessibility for the mobility impaired:

o At least one no-step entrance to the home from the public street or driveway to the exterior door

o All interior doorways at least 36 inches wide

o All environmental controls on the ground level at accessible heights, between 15 " and 48" from the ground

o One accessible bathroom on the ground level

Additional Information:

Visitability adds inexpensive basic safety for occupants and visitors who have mobility impairments, adds convenience for all persons, and neither detracts aesthetically nor adds significant cost. It will become increasingly important as New York's Baby Boomers age, and more of them acquire disabilities.

The concept of Visitability applies to all people, not just people with disabilities. It is not traditional "accessible housing." The concept of visiting is an important one that allows for a more inclusive society. We anticipate that majority of homeowners of Visitable homes will be people who do not have disabilities, but have parents, grandparents, and other relatives and friends who do. Visitable homes will be friendly for everyone at any point in their life. It will allow residents to "age in place." Costly ramps and extended nursing home stays will be unnecessary in cases of an illness or sports injury, because it will be easier to recover at home. Visitable homes help all occupants by making moving appliances and furniture easier.

Several other states and many municipalities have already adopted visitability statutes. These statutes are necessary because current state or federal laws do not require single family homes, duplexes and triples to have basic access. The information here can be found in part at www.drach.org and www.concretchange.org.

How Times Have Changed

2008-06-02T10:07:00.004-04:00

It is now a well known fact that President Franklin D. Roosevelt suffered from Polio and had to use a wheelchair throughout his presidency. It was not a well known fact at the time however as the President and the media did all they could to keep his disability from public sight.

Things have changed quite a bit since those days. A few weeks ago NBC news showed Governor Paterson pressing his face into a legal document as he signed a bill into law. Brian Williams, NBC's anchorman, commented that the point of showing the news footage was to show how challenging public office could be for a visually impaired person. Once upon a time in the not distant future this picture would have been considered beneath the dignity of the office Paterson holds and the ceremony would have been private. I'm sure some people viewing the newscast were very uncomfortable and probably wished 'for the good ol' days' when viewers weren't subjected to such realities. It is a credit to David Paterson that he would let himself be filmed and not take steps to stage some other way of signing the bill. He could just as easily had an aid point the line where he needed to sign or have done so privately before the ceremony and just faked himself signing. Instead he chose to do it himself, exposing something very personal and teaching millions of people around the world to not be ashamed of their disability.

The article link in the entry below is a continuation of Paterson's educating the state and the world about disabilities. What is interesting is that Paterson himself is being educated about embracing his disability. I can totally relate to not picking up dropped change because you don't want to look foolish crawling around on the ground looking for pennies you can't see. In many ways people with visial impairments try to live between the worlds of the disabled and the non-disabled. Since our disability is not as obvious as others and we do have some sight, we often try to get through social interactions pretending that we can see like everyone else. For me its a pride thing. The Governor is voicing this in this article but now that he is a public figure he is leading by example and personal pride must take a back seat to the importance of teaching everyone that people with disabilities are capeable of overcoming great challenges and that the only indignities that we can't deal with are the ones where we are not given the opportunity to show that we can do a job as well as anyone else.

There is much hope in the disability community about what Governor Paterson can do on the legislative level for reducing barriers that limit what people with disabilities can achieve both in their private and public lives. I share those hopes but if nothing can be achieved on those levels because of New York's dysfunctional political system, Paterson will still be a great success in my eyes if he continues to educate people about disabilities as he has done so far.

Article focuses on Govenror Paterson's disability

2008-05-31T16:09:00.006-04:00

The Associated Press ran a very revealing and insightful article about how New York Governor David Paterson adapts to being legally blind.

A Classroom Injustice

2008-05-26T09:13:00.001-04:00

I just read a shocking story about an example of disability discrimination as bad as "Jim Crow" racism. Note that this link is to a post on DailyKos.com, which is a partisan Democratic web site. I wouldn't normally start with a link to a site like that, but I did this time because the story includes an excellent description of how the Special Education and IEP process are supposed to work.

A 5-year-old child in a Florida Kindergarten was "voted out" of his classroom by his classmates, apparently encouraged to do so by his teacher. The child is in the process of being diagnosed with Asperger Syndrome, which affects how a person interacts with others and often results in teasing, bullying, and behavioral problems and conflicts.

You can find two regular newspaper articles about the classroom incident here and here.

Federal Appeals Court Says US Paper Money Discriminates Against the Blind

2008-05-23T13:41:00.008-04:00

Take a look at this article about a Federal Appeals Courts verdict that US paper money discriminates against the blind because there are no differentiations between bills. This is the second time a court has found in favor of the blind on this issue, the first being a lower Federal District Court. The US Treasury is fighting this case because they claim that the blind have adapted to the system. The blind of course disagree (me being one of them), noting that depending on others' honesty is not adaptability but plane neccessity, the two are quite different. The suggested remedies range from making the bill denominations of different size to having some kind of raised markers on the bills.

Federal Court Rules Money Discriminates Against the Blind

Personally I estimate that I lose around $200 a year depending on the 'honesty' system, and I am being quite conservative on this. Yet never has a merchant or taxi cab driver failed to correct me if i'm mistakenly short changing them. I generally try to be positive and imagine that when I've over paid and haven't been corrected that it is because the recipient wasn't paying attention, the fact that my under paying ALWAYS gets noticed makes this imagining hard to maintain. Most people are honest, patient, and helpful, that is about 8 out of 10, but those 2 dishonest folk cost me a lot of money every year.

Of course I take all kinds of measures to avoid such reliance on peoples honesty, but I've yet to find one that works very well. The fact is that it is high time the money was changed so that blind people won't keep being prey for greedy, dishonest people who would steal from us, hopefully the Supreme Court will agree some time in the near future, or maybe the US Treasury will do the right thing and stop fighting this (I'm not holding my breath).

Rep. McHugh Cosponsors the Community Choice Act

2008-05-22T15:23:00.000-04:00

Back in March, we asked people to encourage Rep. John McHugh to cosponsor legislation that would help people with disabilities and senior citizens live on their own terms, in their own homes.

On May 21, Rep. McHugh officially became a cosponsor of the Community Choice Act.

Please take a moment to thank Rep. McHugh for taking this step in support of choice and dignity in long term care. Click the link for more information on the Community Choice Act of 2007.

Advocacy Update

2008-04-25T11:35:00.003-04:00

Hello everyone. Its hard to believe that its already April but it is great to be able to go outside and enjoy warm weather again. April means the State budget is completed and we can take a small breather after months of work on various budget concerns.

Of particular concern for us this year was the $1.5 million cut proposed by the Governor affecting the Statewide Independent Living Centers. Such a large cut could have meant the loss of more than $40,000 to the Plattsburgh center. You can imagine how much that would have hurt our effectiveness in delivering the many services we provide. Many action alerts were sent out asking our friends to contact the governor and state legislators to recognize the positive influence and investment that Independent Living Centers provide to the state and local communities and to therefore restore the cut and increase funding to the centers. We are incredibly grateful for all the support and assistance you gave us in responding to the action alerts. Although the final budget does cut some funding to ILC's your efforts made a difference in making those cuts much smaller than previously proposed, significantly limiting the impact on individual centers' ability to deliver the services we provide.

The Original Governor's proposed budget would have cut $1.5 million from Independent Living Centers. The final budget will cut the allocation for Independent Living Centers by $235,000. We don't know yet how much each center's allocation will be reduced.

In closing, NCCI will have a chartered bus going down to Albany on May 12th for the Assembly Disability Awareness Day. The bus will depart from the Center on Sharron Avenue at 7 AM and arrive back in Plattsburgh around 6 PM. There will be training sessions on a variety of subjects and we will be visiting our local legislators throughout the day. If you are interested in attending please give us a call at 563-9058 and ask for Robert or e-mail me at robert@ncci-online.com. There will be limited space for power chairs so please let us know as soon as possible.

Action Alert! Ask Senator Little to Co-Sponsor S.6311, The Polling Place Access Bill

2008-04-25T11:26:00.004-04:00

Last fall, Senator Larkin introduced S.6311, a polling place access bill. Since then, Assemblyman Cahill altered the polling place access bill he had introduced in the Assembly (A.244) to make the bill "same as" Senator Larkin's bill. The Assembly unanimously passed the bill last year. This year, we expect it will be passed on the Assembly Disability Awareness Day.

S.6311, however, has been stuck in committee for quite some time. We need to get more Senators to support this bill by becoming co-sponsors. The goal is to get enough sponsors and support for passage by Senate Disability Awareness Day on May 6th.

Please call Senator Little at (518) 455-2811 or 561-2430 and ask her to co-sponsor Senate bill S.6311, the Polling Site Access Bill. Also ask her to call Senator Griffo's office (Senate chair of the Elections Committee) to ask him to move the bill out of committee and put it on the floor for a vote on May 6th, Senate Disability Awareness Day.

One more push for ILC funding

2008-04-02T09:18:00.001-04:00

This week is the last chance for supporters of New York's Independent Living Centers to voice their support for funding. The State budget is almost finished. To date, over 400 calls and e-mails have reached the Governor and key legislators in support of restoring and increasing ILC funding. I am including a copy of the Background Summary provided in an action alert earlier this month so you can see what's at stake.

Please take a moment to send a web-based fax on this important issue. Click the link below, and the system will be all set up for you to send faxes to the key decision-makers in Albany.

We all appreciate your support!

Click here to support ILC funding.

Urge Governor Patterson To Fully Fund Independent Living Centers

2008-03-24T10:01:00.003-04:00

Action:

Call Governor Paterson and your local Assembly and Senate member TODAY and leave the following message:

“Please do not permit the proposed across the board Budget cuts to further erode critical services to people with disabilities by cutting funding for independent living centers. These centers help disabled New Yorkers to prepare for, and find, jobs. Independent Living Centers were already cut $1.5 million in this year’s budget at a time when the Regents were requesting an additional $5 million for independent living centers.

Please prevent further cuts to ILC services. Restore the previous $1.5 million cut and provide an additional $5 million in ILC funding in this year’s budget.”

CALL Governor Paterson at 1-518-474-8390.

Find the contact information for your representatives:

http://assembly.state.ny.us/mem/

http://senate.state.ny.us/senatehomepage.nsf/senators?OpenForm

Background:

Last year, the legislature approved total ILC funding of $13.2 million. The Executive Budget provided $11.7 million in ILC funding for the 2008-2009 budget year. Last year’s increase provided one year of full funding for three new ILCs in Herkimer, Putnam and Sullivan counties. The balance of the increase was distributed to the existing 36 centers identified in state Education Law.

The $1.5 million funding increase approved by the legislature last year provided some additional ability for centers to address existing funding shortfalls. Funding has not kept pace with the dramatic increase in demand for services over several years, however. According to figures from the state Department of Education, demand for ILC services has increased 27% from 2000 to 2007, while funding has increased only 11%. We are therefore seeking an ILC funding increase of $5 million as well as authorization in state Education Law and full funding for three new centers in Herkimer, Putnam, and Sullivan counties and a fourth new center in Ontario county.

ILCs need a $5 million increase to continue and expand their work providing people of all ages and disabilities with services that allow them to:

Develop skills to live independently
Earn degrees, find jobs, and become self-sufficient
Reduce their reliance on state and federal benefit programs
Stay out of institutions and participate fully in community life
ILCs are more important to the State than ever before given the following facts:

· The employment gap between people with disabilities and those without disabilities is increasing

· The unemployment rate for individuals with disabilities is 66.5%, according to Cornell University’s most recent figures

· Working age people with disabilities are more likely to be living in poverty than people without disabilities, and the gap is increasing

· Educational attainment of people with disabilities lags behind the broader population, and working age people with disabilities are less likely to obtain a college degree

The benefits to the state of ILC-provided services include:

· ILCs can help close the education, employment, and income gap between people with disabilities and people without disabilities.

· ILCs can facilitate the implementation of the state’s health care reform goals, including the restructuring of long term care and Medicaid, by ensuring that people with disabilities receive the services and supports they need to live independently in their communities.

· ILCs can help lower the cost of long-term care. According to VESID data, from 2001-2005, ILCs transitioned or diverted 4,152 individuals from nursing homes and other institutions, saving the state nearly $350 million.

· ILCs can help facilitate the state’s compliance with the US Supreme Court’s Olmstead decision through their nursing facility transition and diversion efforts and by providing other services that enable people with disabilities to live in the most integrated setting.

Action Alert: Help Us Pass The Community Choice Act

2008-03-13T10:52:00.004-04:00

Issue:

Across the country, advocates are working hard to get cosponsors for the Community Choice Act (CCA). There is a steady stream of Representatives signing on as cosponsors of this important legislation. But there are still Representatives who had signed on as cosponsors of Medicaid Community-Based Attendant Services and Support Act (MiCASSA) who haven't signed on to CCA. The Center for Disability Rights in Rochester (CDR) is part of a coalition that is consistently advocating for passage of the Community Choice Act in our nation's capital. CDR is contacting the offices of these Representatives, but staff often report that the Representative haven't signed on because local constituents haven't contacted their offices.

In New York, six Representatives who had signed on as supporters of MiCASSA have not yet signed on to the Community Choice Act. Our very own Congressmen, John McHugh is one of these representatives, we need to urge him to cosponsor the legislation as he has done in the past.

Action:

Please call Congressman McHugh at (202) 225-4611 or (518) 563-1406 and urge him to please co-sponsor the Community Choice Act (HR 1621), which he has co-sponsored in the past when it was called MiCASSA.

Background:

The Community Choice Act builds on the Money Follows the Person initiative, paving a way to Real Choice in long term care. The bill will allow people who are eligible for nursing homes or other Medicaid-funded institutions to have the choice of living in the community through various services and supports. The legislation also provides enhanced federal matching funds to help states develop their long term care infrastructure and grant funds to help states increase their ability to provide home and community-based services. Finally, this bill creates a demonstration project to evaluate service coordination and cost sharing approaches for those eligible for both Medicaid and Medicare services.

Benefits of the Community Choice Act for New York

2008-03-13T10:40:00.004-04:00

The following information about the benefits of the Community Choice Act for New York State comes to us from Bruce Darling, Executive Director of the Center for Disability Rights (CDR) of Rochester.

"As for New York, that’s an EXCELLENT question. I’m sure that even some advocates may think that New York has sufficient services and we don’t “need” this legislation. But the Community Choice Act would indeed be beneficial for New Yorkers and the state itself.

I think the impact on actual people is really important. Let me list those first.

The Community Choice Act levels the playing field and assures choice in the long term “care” system. Right now, institutional “care” is mandated by the federal government. States MUST pay for nursing facility care. The Community Choice Act doesn’t create a new mandate, but it does expand the existing mandate so that people who would be eligible for placement in a facility could have the CHOICE to live in the community with supports. The Community Choice Act would require that states have a community-based option for people who would otherwise be placed in an institutional setting. Until we get the Community Choice Act passed, institutional “care” will remain the standard/norm. As other states have run into financial problems, they have cut community based services in order to maintain funding for nursing facilities because the institutions are REQUIRED under federal Medicaid law and community services are not.

Even look at the language that is used. Home and Community Based Services are often provided through WAIVERS where the state is asking if it can use money that is designated for institutional placement to pay for community based services. These waiver programs are capped and may run out of slots, meaning that people would need to go into a facility until a slot becomes available. We haven’t had much of this in New York, but it could easily become a problem here as the state expands the use of waivers.

The Community Choice Act includes assistance with the instrumental activities of daily living. New York does have an extensive long term care system, but it hasn’t effectively served individuals with Alzheimer’s disease and other dementias. Although at one time these individuals were served under the personal care program, that changed with a court case and the personal care program (including the consumer directed personal assistance program) don’t assist with instrumental activities of daily living and supports like “safety monitoring”. Even now, this group of people (who desperately need services) have EXTREMELY LIMITED options in New York. Consequently families get burnt out meeting the individual’s needs and the person ends up in a nursing facility.

The Community Choice Act includes a maintenance-of-effort requirement. This means that states can not diminish more enriched programs already being provided in the state. Again, as we face uncertain economic times, this would be particularly important in a state like New York which has a wide range of programs.

And the Community Choice Act will also benefit our state.

The Community Choice Act provides an enhanced Federal match for the five years before the services become permanent. With this enhanced match states which begin planning activities for changing their long term care systems and include Community-based Attendant Services and Supports in their State Plan would receive an additional 10% in federal matching funds. That means New York would get 60 cents on the dollar rather than just 50 cents. A dime doesn’t sound like much but on the scale we are talking, it’s good money. And its NEW money! We could definitely use that to balance our budget.

The Community Choice Act also provides an enhanced match (up to 90% Federal funding) for individuals whose costs exceed 150% of average nursing facility costs. Okay, that one sounds too much like blah blah blah, but it’s really cool. It helps both the state AND our community. The cost of serving some people is just really expensive. We were concerned that this group of people might get “left behind” in nursing facilities because there would be a financial incentive to keep them there. This provision of the Community Choice Act means that the federal government would pay a higher Medicaid match (up to 90% of the cost) to support these individuals in the community. A state like New York, which provides a significant personal care benefit (up to 24 hours per day), would get extra federal dollars to serve these people. More federal Medicaid matching funds… the state likes that. Back to us and the people we represent. We like this aspect of the legislation because it takes the heat off of people with more extensive support needs (who for years have been under fire for costing too much) and it because it helps level the financial playing field, it FREES OUR PEOPLE! "

Voting Machines Update

2008-02-09T12:25:00.000-05:00

Clinton and Essex Counties will replace their current voting machines with a new, more accessible voting system. For more information, read today's article in the Press-Republican.

Action Alert: Independent Living Center Funding

2008-02-08T14:30:00.000-05:00

Issue:

Independent Living Center funding

Action:

Please call Governor Spitzer today at 518-474-8390 and say:

"Please restore the $1.5 million cut in funding to Independent Living Centers in the Executive Budget in the 21 day budget amendments and increase funding to ILCs by $5 million."

Background:

Last year, the legislature approved total ILC funding of $13.2 million but the Executive Budget provides $11.7 million in ILC funding for the 2008-2009 budget year. Last year's increase provided one year of full funding for three new ILCs in Herkimer, Putnam and Sullivan counties. The balance of the increase was distributed to the existing 36 centers identified in state Education Law.

The $1.5 million funding increase approved by the legislature last year provided some additional ability for centers to address existing funding shortfalls. Funding has not kept pace with the dramatic increase in demand for services over several years, however. According to figures from the state Department of Education, demand for ILC services has increased 27% from 2000 to 2007, while funding has increased only 11%. We are therefore seeking an ILC funding increase of $5 million as well as authorization in state Education Law and full funding for three new centers in Herkimer, Putnam, and Sullivan counties and a fourth new center in Ontario county.

ILCs need a $5 million increase to continue and expand their work providing people of all ages and disabilities with services that allow them to:

Develop skills to live independently
Earn degrees, find jobs, and become self-sufficient
Reduce their reliance on state and federal benefit programs
Stay out of institutions and participate fully in community life

ILCs are more important to the State than ever before given the following facts:

· The employment gap between people with disabilities and those without disabilities is increasing

· The unemployment rate for individuals with disabilities is 66.5%, according to Cornell University's most recent figures

· Working age people with disabilities are more likely to be living in poverty than people without disabilities, and the gap is increasing

· Educational attainment of people with disabilities lags behind the broader population, and working age people with disabilities are less likely to obtain a college degree

The benefits to the state of ILC-provided services include:

· ILCs can help close the education, employment, and income gap between people with disabilities and people without disabilities.

· ILCs can facilitate the implementation of the state's health care reform goals, including the restructuring of long term care and Medicaid, by ensuring that people with disabilities receive the services and supports they need to live independently in their communities.

· ILCs can help lower the cost of long-term care. According to VESID data, from 2001-2005, ILCs transitioned or diverted 4,152 individuals from nursing homes and other institutions, saving the state nearly $350 million.

· ILCs can help facilitate the state's compliance with the US Supreme Court's Olmstead decision through their nursing facility transition and diversion efforts and by providing other services that enable people with disabilities to live in the most integrated setting.

2008 Presidential Candidates on Disability Issues

2008-02-04T12:16:00.000-05:00

The New York Primary is tomorrow, and both Democrats and Republicans have a real opportunity to influence who their parties' Presidential nominees will be this year. Everyone has his or her own reasons for voting for this or that candidate, and it is fairly easy to learn about each candidates's position on foreign policy, health care, economics, education, the war, etc. It isn't quite as easy to find out how candidates would deal with disability issues.

Here are some links and tips to help you learn more about the Presidential candidates' disability policy proposals:

American Association of People with Disabilities - [2008 Presidential Election]

Disability policies on candidate web sites
(listed alphabetically by last name)

Senator Hillary Clinton - [Economic Opportunities for People with Disabilities]
Governor Mike Huckabee - [Nothing on people with disabilities found on website]
Senator John McCain - [Nothing on people with disabilities found on website]
Governor Mitt Romney - [Nothing on people with disabilities found on website]
Senator Barack Obama - [Disabilities]
Congressman Ron Paul - [Nothing on people with disabilities found on website]

Candidates without specific disability policy statements may have policies related to people with disabilities listed under issue categories like "Senior Citizens", "Health Care", "Education", and "Employment".

There's one more thing you can do, before and after your primary vote on February 5. Use the candidates' web sites to e-mail or post to their online forums and ask them to post their disability issue positions prominently on their web sites and mention them in their campaign speeches. The more we ask candidates about the policies that affect people with disabilities, the more time the candidates will spend learning about these issues themselves. Ultimately, that will improve things no matter who is elected, and earn greater respect and influence for the disability community.

2008 Disability Priority Agenda

2008-01-19T19:03:00.000-05:00

The New York Association on Independent Living has released its Disability Priority Agenda for 2008. Click the link below to read the agenda summary. For more details on specific issues, click the links on the right side of this page.

2008 Disability Priority Agenda

Action Alert - Affordable Housing

2007-12-21T16:00:00.001-05:00

Tell the Division of the Budget to make affordable housing a priority in 2008!

Background:

We all know this is a tight budget year. With a deficit of $4.3 billion, the Governor and State Legislators are facing difficult decisions. We also know that for the past 13 years, funding for state housing programs has remained flat. With the promise of new leadership that recognizes the critical housing needs of our state, we MUST put affordable housing on the top of the priority list for 2008.

Help us to urge the NYS Assembly to return this month to pass A.9342 before year's end!

WHAT YOU CAN DO:

You can help to make this happen by sending the following email http://capwiz.com/habitatnyc/home/ to Paul Francis, Budget Director, at the Division of the Budget - urging him to increase funding for existing housing programs and to create an Empire State Housing Investment Fund with a dedicated revenue stream.

Tell Us What You Think:

We invite you to share your thoughts on this issue and others at our Issues & Advocacy Blog.

New York Times Articles

2007-12-13T14:26:00.000-05:00

The New York Times has recently focused some attention on the problem of delays in disability determinations due to a nationwide backlog of cases with too few judges to decide them. Here are links to two articles:

News article: Disability Cases Last Longer as Backlog Rises

Editorial: Disabled, and Waiting for Justice.

Many thanks to a good friend of NCCI for alerting us to the Editorial link.

Action Alert

2007-12-06T10:27:00.000-05:00

Call Assembly Speaker Sheldon Silver
TODAY (December 6, 2007)

After 5 years of tireless advocacy, the SHU bill that will allow New York State to provide more appropriate and humane in-prison residential and treatment services for prisoners with severe psychiatric disabilities is only one step away from the Governor’s desk.

The bill will also ensure that correctional officers are provided with adequate mental health training and will significantly improve prison safety conditions across New York State.

Help us to urge the NYS Assembly to return this month to pass A.9342 before year’s end!

CALL SPEAKER SILVER TODAY
518-455-3791
Leave the following message:

“I’m a registered voter from (your locality) calling
to urge Speaker Silver to assure Assembly passage of A.9342 before year’s end
to improve prison mental health care and safety conditions in New York!”

Help end the suffering of people in prison with psychiatric disabilities!

Action Alert: Expand EPIC to People With Disabilities Under Age 65

2007-12-04T15:01:00.000-05:00

Currently, the EPIC program (NY State’s pharmaceutical assistance program) is limited to people age 65 and over. People with disabilities under age 65, like the elderly, live on fixed incomes and often have significant prescription drug needs. However, non-elderly adults with disabilities do not have the prescription drug safety net offered by EPIC.

At least 15 other states, including Massachusetts, New Jersey, and Connecticut, have pharmacy assistance programs that cover non-elderly adults with disabilities.

Medicare Part D has such large gaps in its coverage that it has not solved the prescription coverage problem for many New Yorkers. Some cannot afford the cost-sharing that Part D requires. Others cannot buy all of the drugs they need through Part D due to formulary restrictions imposed by Part D plans. Some people with disabilities are actually worse off with Part D coverage than they were before its implementation.

Further, many non-elderly adults with disabilities are not eligible for Part D because they are in the two-year waiting period for Medicare after being approved for SSDI.

At the same time, Part D has created an opportunity to expand EPIC to people with disabilities at a lower cost to the State than ever before. Part D plans would bear a significant portion of the costs of an EPIC expansion. Thanks to the enrollment of EPIC seniors in Medicare Part D, the EPIC program saved $120 million in 2006 and another $143 million this year. These savings alone would provide more than enough funds to expand EPIC. Now that EPIC seniors are required to enroll in Part D plans, the savings to EPIC will be even greater.

Despite the fact that an EPIC expansion was not included in last year's budget, your efforts have been instrumental in making crucial progress on this issue. Through the end of 2007, Governor Spitzer is seeking input from the public about next year's budget, so now is an opportune time to send emails to the Governor asking him to include EPIC expansion in next year's Executive Budget.

ACTION:

Tell Governor Spitzer that New Yorkers with disabilities desperately need EPIC! Please go to this site and click on the “Go!” button to send your message to the Governor.

If you have any questions concerning this Action Alert, please contact Anne Shearer, 518-465-4650 or ashearer@ilny.org

Action Alert - Budget Hearings & Comment

2007-11-20T14:29:00.000-05:00

The New York State Division of Budget is holding several hearings around the state designed to give the public a chance to comment on next year's state budget. Hearings have already taken place in Buffalo and Rochester. Next week there will be hearings in Syracuse, Utica, Brooklyn, and Long Island.

Click here for exact dates, times, and locations for the hearings.

Officials will be listening to comments on any aspect of the budget, including decisions that would affect people with disabilities, such as home care funding, special education, employment services, funding for home accessibility, etc.

For those who can't attend a public hearing, the Division of Budget is also accepting comments by e-mail!

WHAT YOU CAN DO:

E-mail your comments to:

BudgetHearing@budget.state.ny.us

You can submit comments on any aspect of the New York State Budget. If you want to comment on funding of disability programs here are some tips:

1. If possible, use the names of specific programs, or be as specific you can be. If you don't know the exact name, mention kinds of programs you feel need support, like "home care", "independent living centers", "vocational rehabilitation", etc.

2. If you are a person with a disability, or are related to someone with a disability be sure to mention it. If you work with people who have disabilities, mention that. Explain how you know that your comments are important.

3. If you can, describe how the program you support helps people with disabilities maintain their independence, and how that independence would be reduced if the program's budget were cut or eliminated.

NEXT:

Let us know if you do send in comments on the budget. If you feel comfortable, share your comments with us, or post them on our Disability Issues Blog.

NCCI Hosting Webcast of Presidential Candidate Forum

2007-11-01T15:17:00.000-04:00

A National Forum On Equality, Opportunity, and Access

The North Country Center for Independence is pleased to announce that it will be a webcast hosting site for this terrific event held in Manchester, New Hampshire on Friday, November 2nd. It is very rare to have so many Presidential hopefuls speaking about disability issues. We need to support our friends in New Hampshire and show the candidates how important these issues are and how much we care about them. An event such as this can be a true turning point for the future, maybe in the future candidates will speak of disability issues as a matter of course in their daily campaigning, and this event could be the catalyst for that important change. We hope to learn much from this event and even more importantly to teach the candidates about our issues and our activism.

The event will begin at 9 AM on Friday, November 2nd, with opening ceremonies and will continue all day until 4 PM. The main highlights are as follows;

-9AM- Opening Ceremony
-9:55AM- Senator Hillary Clinton
-11AM- Senator Joe Biden
-11:30AM- Senator Chris Dodd
-1:30PM- Governor Bill Richardson
-2PM- Congressman Dennis Kucinich
-2:30PM- Former Congressman David Bonior (Campaign manager for former Senator John Edwards)
-3PM- Former Senator Mike Gravel
-3:30PM- Senator John McCain
-4PM- Former Mayor Rudy Giuliani (Unconfirmed)

Entertainment will be provided by Keith Jones.

You are cordially invited to join us in the conference room of the NCCI offices at 102 Sharron Avenue in Plattsburgh. We will assemble at 8:30AM and will have the webcast running all day. Please feel free to drop in at any time you choose and leave as your schedule dictates.

You can view the webcast from your own computer by going to http://www.hovrs.com/. You will not need any special passwords or software to view the webcast however high-speed Internet connection is required.

For further information call Robert at 563-9058.

Presidential Candidate Questionnaire Responses Now Available

2007-10-26T11:04:00.000-04:00

AAPD has posted up the responses to their candidate questionnaire focusing on disability issues. Click on the link below to view the responses.

Click here to see candidates' answers.

Breaking News: Senator Clinton Will Attend Candidate's Forum on Disability Issues In New Hampshire

2007-10-25T14:01:00.000-04:00

Just this morning, AAPD received confirmation that Senator Hillary Clinton has agreed to participate in the "National Forum on Equality, Opportunity, and Access," a presidential candidate forum on disability policy to be held a week from Friday, November 2, in Manchester, New Hampshire.

In addition to Senator Clinton's participation, Senators Dodd and Biden and Congressman Kucinich have also confirmed their participation.

Article on Voting Access

2007-10-23T19:16:00.000-04:00

This past Sunday's Albany Times Union carried an opinion piece by Susan Cohen of the New York State Independent Living Council, on the current state of the drive for accessible voting in the State of New York. Susan provides an excellent summary of the issue and makes a compelling case for why voting accessibility is important.

SCHIP Override Fails

2007-10-19T22:20:00.000-04:00

The House of Representatives failed to override the President's veto of the State Children's Health Insurance Program renewal bill. However, those of us in the North Country who favored the override can thank Rep. John McHugh for his vote in favor of overriding the President's veto. Rep. McHugh is a Republican, so his vote wasn't easy, and he deserves our appreciation.

Top Two Presidential Candidates Must Participate at National Disability Presidential Forum

2007-10-18T10:56:00.000-04:00

Hillary Clinton and Rudy Giuliani, both New Yorkers, and front runners for their respective presidential party nominations, have declined making commitments to attend the national disability presidential forum in New Hampshire on November 2nd, 2007. See the following link for a flyer with more details about the event:

Presidential Candidates' Forum.

We need to generate letters through CDR’s advocacy website to Hillary Clinton’s New Hampshire headquarters to convince them to have her attend the event. We also need to generate a second set of letters to Rudy Giuliani’s New Hampshire headquarters to convince them to have him attend the event and complete the event candidate questionnaire.

Our national colleagues have asked us to step it up and put on grassroots pressure to hopefully convince these presidential front runners to increase their participation at the event. I think we are up to the task!

ACTION STEPS

1) FOR HILLARY CLINTON

· Use the link provided below to access a letter on the CDR advocacy website to send a letter to Hillary Clinton to encourage her to participate at the event:

Send a letter to Hillary Clinton.

· Be sure to follow the instructions. Fill in your personal information into the appropriate boxes and click the best choice from the two drop down menus. Delete or type over any pre-existing information that may be in the boxes. If you don’t know what information to put in a box (like the zip+4 box), then skip it.
· Click the “Send Message” button once to complete the task and send the letter to Hillary Clinton’s New Hampshire headquarters.
· If appropriate, forward the action alert to other colleagues and encourage them to take action!

2) FOR RUDY GIULIANI

· Use the link provided below to access a letter on the CDR advocacy website to send a letter to Rudy Giuliani to encourage him to participate at the event:

Send a letter to Rudy Giuliani.

· Be sure to follow the instructions. Fill in your personal information into the appropriate boxes and click the best choice from the two drop down menus. Delete or type over any pre-existing information that may be in the boxes. If you don’t know what information to put in a box (like the zip+4 box), then skip it.
· Click the “Send Message” button once to complete the task and send the letter to Rudy Giuliani’s New Hampshire headquarters.
· If appropriate, forward the action alert to other colleagues and encourage them to take action!

3) ACCESSIBLE FORMATS

· bradw@nysilc.org in order to obtain text versions of the letters along with forwarding faxes and email addresses. Ideally, it is best to use the CDR website whenever possible because the system is preprogrammed to forward the letters to the correct fax numbers and email addresses automatically.

Ten million and 3 reasons to tell your Representative to override the President's child health veto!

2007-10-17T14:22:00.001-04:00

Call Wednesday or Thursday! 1-800-965-4701 toll-free.

Tell your Representative to override the President's Children's Health Insurance veto!

It's easy to call - and really, it will make a difference! When you call, ask for Congressman McHugh's office. Urge him to vote to provide health coverage to millions of uninsured children by overriding the veto of the Children's Health Insurance Program Reauthorization Act (H.R. 976).

Reasons 1 through 10 million:

The children whose health care is covered if the President's veto is overridden and the SCHIP bill becomes law. That includes nearly 4 million kids who won't be insured unless the new law passes, as well as the more than 6 million children now covered. (Meet Bethany, one of the million reasons).

Reason 10,000,001:

If the President's veto stands, children now enrolled will start to lose health coverage - both because funds are running out, and because of restrictions the Bush administration has imposed on its own that will force 23 states to reduce eligibility, affecting hundreds of thousands of children. The law passed by Congress would undo these restrictions.

Reason 10,000,002:

Take a stand against the misinformation campaign. There's been an orchestrated effort to tell people the law would raise eligibility to $83,000 a year. No. In fact, it newly restricts federal dollars to states choosing to make children eligible in families earning more than 3x the poverty line (about $62,000 for a four-person family). The Administration and its shrinking number of devotees contend that families who can get private coverage won't. But the Congressional Budget Office says no - most would be uninsured. The President's own tax credit plan would provide far less help to people who actually lack coverage. When claims are refuted over and over, continuing to state them isn't just misinformation - it's a lot more like lying. Learn the facts.

Reason 10,000,003:

This is a high profile vote, with paid ads in key districts and lots of press. If your Representative doesn't hear from constituents, it tells him/her that people might not care that much about how he/she votes. Silence doesn't just prevent children from getting insured now - as bad as that is. It also pushes health coverage lower down on the priority list in the future.

One call to your Representative. Millions of reasons.

On Thursday, October 18, the U.S. House will vote on overriding that veto so these millions of children can get care. Rejecting the veto takes a two-thirds vote. It will be close. Call on Wednesday, or early morning on Thursday, if you have to.

*If you don't know your Rep's name visit the House of Representatives web site, and enter your zip code, on the upper left side.

See how your Representative voted on final passage of the children's health bill.

If your Representative voted no, or didn't vote, your call is especially important - some of the no votes or absences must be turned around in order to get to two-thirds. We can get there - if you and your neighbors call! Please forward this to everyone you know who cares about children.

The toll-free number is provided courtesy of American Friends Service Committee.

AFSC welcomes groups to circulate and use the toll-free number in support of non-partisan federal goals and without linking the alert to a website soliciting donations or actions which may be used to support partisan lobbying or work.

Thanks!