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Ari Ne’eman on disability

23 Dec

There is a myth that is spreading around the internet. The myth that neurodiversity means denying that autism is a disability. I see this over and over on this blog in the comments. I see it elsewhere in blogs that put truth second to promoting their messages. I have assumed that most people see the myth for what it is and disregard the comments of the uninformed or the misinformationists.

So you can imagine that was quite dismayed to see the myth be repeated by Lisa Jo Rudy on the autism.about.com blog.

Ari Ne’eman is the founder of the Autism Self-Advocacy Network (ASAN) and a well-known activist on behalf of the rights of individuals on the autism spectrum. He’s also a controversial figure because of his views on “neurodiversity” – the perspective that autism is just one of many different ways of thinking, rather than a disability or disease to be cured.

I don’t think she was trying to discredit Mr. Ne’eman, she was just passing along what she had read. Ms. Rudy was kind enough to post a message that Mr. Ne’eman sent, correcting the misconception:

Correction: Ari Ne’eman writes to say: I have never claimed autism is not a disability – in fact, I worked to pass the ADA Amendments Act, to ensure that it would be considered as such under the ADA. The claim that I or ASAN’s advocates don’t consider autism a disability is an unfortunate myth, which I’d appreciate if you could correct

I think a few more comments by Mr. Ne’eman are worth noting. This one from the Cat in a Dog’s World blog.

“As for the comment made about my Jewish Week article, I don’t recall saying at any point there that autism wasn’t a disability – only that it was not a disease, something I think exemplifies the neurodiversity position much better. I did seem to imply it though with the phrase “difference is not disability”. Though the phrase is technically true, I shouldn’t have phrased it that way. I was wrong to do so – and if that is the worst mistake I’ve made or ever will make in print, I’ll count myself lucky. Fortunately, I have years of advocacy work and public statements that show my work in the Disability Rights movement as a person with a disability.

So let me be clear now – Asperger’s and the broader autism spectrum are disabilities. I know this not just from personal experience but because I helped pass the law that reinforced this as the case – the ADA Amendments Act, which re-established a broad definition of disability under the ADA after a decade of judicial narrowing that drove even significant intellectual disability out of the law’s coverage, much more so the vast majority of the autism spectrum.

It was one of the first things I had the pleasure of doing when I got involved in Washington. Here’s the press release from when we announced the compromise brokered with the business community:http://www.civilrights.org/press/2008/employers-and-disability.html It comes from the Leadership Conference on Civil Rights, a group that I consider it an honor to have had the opportunity to work with both during the ADA Amendments effort and the more recent advocacy push around health care reform. We have a long way to go in building our community, but I’m really heartened that we’re being welcomed by the cross-disability and civil rights communities. It’s a good sign about our movement’s future.”

Many people spreading this myth rely on a comment Mr. Ne’eman made when he was seventeen years old.

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not, in itself, disability; it becomes disability when it is not properly understood and accommodated. Someday, I hope the world will recognize that those who think in different ways should be welcomed.

Difference is not, in itself, disability….

That is not the same thing as saying that autism is not a disability, not at all.

The odd thing, when people quote that paragraph, they tend to leave the final line off: “Someday, I hope the world will recognize that those who think in different ways should be welcomed.”

Mr. Ne’eman contributed testimony in support of the ADA (Americans with Disabilities Act) Amendments Act, or ADAAA, being one of many thanked in the Congressional Record:

“Finally, at the risk of leaving out some individuals, we want to recognize some of the additional countless individuals who helped with educating Members of Congress, doing important coalition and media work, and providing legal input on the bill as it progressed through Congress, from its first stages through the final vote today

One need only spend a short time on the Autistic Self Advocacy Network’s website to find many statements by Mr. Ne’eman and others clearly showing that ASAN members recognize autism–as in all the autism spectrum disorders–as a disability.

Mr. Ne’eman and ASAN also worked on recent legislation to limit seclusions and restraints in schools.

I am curious as to how people reconcile the myth that Mr. Ne’eman doesn’t consider autism as a disability with his efforts in the disability community?

From what I am reading on the net lately, people are now considering the recognition of autism as a disability as something new for Mr. Ne’eman. The Congressional Record I cited above is from 2008. Of course, one could notice that in his 2006 [correction note, I mistakenly put 1996 here originally] essay, the same one that is used to paint him as denying the disability inherent in autism, Mr. Ne’eman refers to his own experiences within special education.

Unfortunately I don’t think things will change much for Mr. Ne’eman. His detractors are not prone to admitting mistakes. I don’t expect them to make much inroads in derailing Mr. Ne’eman’s nomination to the National Council on Disabilities, either. It is one thing to spread misinformation on the internet. It is another thing entirely to convince people who have seen Mr. Ne’eman working within the disability advocacy community.

Autistic Self Advocacy Network leader Ari Ne’eman has been nominated by President Barack Obama for a position on the National Council on Disability

17 Dec

From a White House press release yesterday:

President Obama Announces More Key Administration Posts, 12/16/09

* Marie Collins Johns, Deputy Administrator, Small Business Administration
* Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
* Jonathan M. Young, Chair, National Council on Disability
* Carol Jean Reynolds, Member, National Council on Disability
* Fernando Torres-Gil, Member, National Council on Disability
* Chester Alonzo Finn, Member, National Council on Disability
* Gary Blumenthal, Member, National Council on Disability
* Sara Gelser, Member, National Council on Disability
* Ari Ne’eman, Member, National Council on Disability
* Dongwoo Joseph “Joe” Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

edit to add, from the press release:

Ari Ne’eman, Nominee for Member, National Council on Disability
Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

Disability Coalition Applauds Introduction of Legislation that Protects Students with Disabilities from Abuse

10 Dec

Below is a press release from the Justice for All Action Network and the Autistic Self Advocacy Network. While the topic of seclusion and restraint is painful to write about, it is a pleasure to highlight disability advocacy like this.

This is also discussed on the Education Week blog.

Seclusion and restraint legislation one of 12 items on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations and allies, applauds proposed legislation that protects students with disabilities from the misuse of seclusions and restraints in schools. Introduced today in the House of Representatives and the Senate, the bill will equip students with disabilities with federal protection from abuse in the schools.

“There is a long history of students with disabilities being subjected to inappropriate and abusive seclusions and restraints,” said Ari Ne-eman of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee. “The legislation introduced today is the first of its kind, going far beyond previous efforts to protect students with disabilities. We look forward to working with House and Senate leaders to pass legislation that addresses each of our concerns and provides students with disabilities with urgently needed protections from abusive seclusions and restraints.”

While the JFAAN Coalition hopes to continue work with House and Senate leaders to ensure that the final legislation is the strongest possible, the bill introduced today is the most comprehensive legislation to date protecting students with disabilities from abuse in the schools.

“We commend Chairman Miller, Representative McMorris Rodgers and Senator Dodd for taking a stand against the barbaric treatment of disabled children and youth that has been allowed to take place in too many schools for too many years. Schools need to educate children without putting students in solitary confinement or using inappropriate and unsafe restraint. When schools become mini-prisons, families have no reason to send their children to school,” said Andrew Imparato, President and CEO of the American Association of People with Disabilities, a member of the JFAAN Steering Committee.

Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint. “The fact that our children are still subject to abuse is a disgrace,” said Dana Commandatore, the parent of an Autistic child and a supporter of the Autistic Self Advocacy Network. “The legislation introduced today is an important step toward ensuring that students with disabilities are protected from abusive restraints and seclusions.”

Legislation that protects people with disabilities from unwarranted seclusions and restraints is a key component of a campaign agenda developed by JFAAN. The 12-point JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Ari Ne-eman, Autistic Self Advocacy Network, (202) 596-1056;
Andy Imparato, American Association of People with Disabilities, (202) 521-4301

Ari Ne’eman of ASAN testifies to the US Equal Employment Opportunity Commission

3 Dec

Ari Ne’eman, of ASAN (the Autistic Self Advocacy Network), recently testified on ADAAA Proposed Regulations before the US Equal Employment Opportunity Commission. The transcript is below.

Testimony given to the US Equal Employment Opportunity Commission and Department of Justice Civil Rights Division, Town Hall Listening Session on the ADAAA Proposed Regulations, Philadelphia, PA, 10/30/09; Stuart Ishimaru, Acting Chairman of the Equal Employment Opportunity Commission, presiding.

MR. ISHIMARU: Next we have Ari Ne’eman. We look forward to your statement and welcome.

ARI NE’EMAN: Thank you very much and thank you for the chance.

I represent the Autistic Self Advocacy Network, a group of Autistic people speaking for ourselves.

For too long, prior to the passage of the ADA Amendments Act, the approach of addressing discrimination and of viewing the difficulties that those on the autism spectrum face through the context of discrimination rather than merely through the context of impairment or charity was one that was all too often not taken in the autism world. With the passage of the ADA Amendments Act, and the promulgation of regulations implemented with a unique view to building a culture of civil rights that coincides with the growing rights on the autism spectrum, those who desire to speak for themselves and take an active role in how we are viewed in society are trying to address the ways in which the society still poses obstacles.

We’re very pleased by the regulations proposed in order to implement the ADA Amendments Act. And we have three broad suggestions in terms of how to improve them for adults and youth on the autism spectrum seeking to find and maintain, and avoid discrimination in the context of, employment.

First, we note that autism was included amongst the list of examples of impairments that will consistently meet the definition of disabilities. We would like to suggest that this be somewhat clarified to broaden the term to autism spectrum disability, rather than just simply autism, seeing as the term autism is commonly understood to refer to five diagnoses in the DSM-IV: Autistic disorder, Asperger syndrome, and others on the autism spectrum. Now, these different diagnoses have somewhat different characteristics, but they all substantially limit communicating, interacting with others and learning. As a matter of fact, in the DSM-V, the next edition, it has been proposed that these diagnoses be combined into a single autism spectrum disorder or autism spectrum disability diagnosis reflecting the fact that for more individuals, the particular autism spectrum disability diagnosis they receive is largely dependent upon what professional they visited or what region of the country they should happen to live in. We believe that clarifying the language to reflect autism spectrum disability will ensure that all autism diagnoses are covered.

Second, we also believe that in respect to the “regarded as” from the symptoms of impairment leading to adverse actions by employers, when this is brought up, that some consideration for the needs of people with invisible disabilities must be addressed in respect to the facts for people with invisible disabilities. One of the greatest difficulties is that our symptoms of impairment are extent to a lesser extent in the general population. We propose that a phrase be added in the section under actions taken based on symptoms of an impairment or based on use of mitigating measures, clarifying that an action taken on the basis of behavioral symptoms also present in the general population also constitutes an action covered under the “regarded as” prong. For example, an individual who is dismissed from a data entry job because he or she does not make eye contact with their supervisor, even if the employer is unaware of the autism spectrum disorder or disability, should still be covered under the “regarded as” prong of this definition.

Third, we also encourage that in respect to section 1630.10, discussing qualification testing and qualification tests, that particular focus be given in the example of a specific example of the ways in which personality tests are administered by many employers. As a matter of fact, a 2003 survey by Management Recruiters International found that 30% of American companies use personality tests, which often act to serve as an obstacle to the full access and the equal consideration in employment and hiring decisions for people with social communication disabilities. As such, we propose the inclusion of an example, to make this section more actionable for those of us with invisible disabilities and for those of us with communication disabilities and focusing on whether or not employees are asked questions as a condition of hiring or relating to social relationships or anxiety in social or other contexts. We feel that this will have an effect on employment discrimination in hiring and promotion for people with invisible disabilities.

Overall, we were extremely pleased by the quality of these regulations. And our community is looking forward to working with the Equal Employment Opportunity Commission and working with the broader civil rights community to help build a culture of civil rights and a culture of ADA enforcement in the autism spectrum disability community and beyond.

Thank you very much for your time and I would be glad to answer any questions.

MR. ISHIMARU: Thank you very much. Very, very helpful. Are there any questions? No? I think you were pretty clear.

MR. ISHIMARU: I actually have one. On the personality tests, do you have a feel of how often they’re used and for people with autism spectrum disability issues, are they … will they always root out people who have the disability or does it happen more often than not?

ARI NE’EMAN: Well, this is something that’s a growing concern in the human resources context. And one of the issues is that the use of personality testing is growing significantly, with 30% of American companies utilizing them in one form or another. There’s a tremendous amount of diversity in terms of what personality tests are being utilized, the level of science that might back them and there’s actually been in the disability context and we know in the context of social communication disabilities, in large part, because of the very issues that led to the passage of the ADA … very little consideration as to the extent to which these personality tests are focusing on job-related tasks that would be covered by a matter of business necessity. We believe the anecdotal experience of many of our members and those of us on the autism spectrum show that these tests do tend to screen out adults on the autism spectrum. Particularly, because they’re being applied in contexts that do not necessarily have those particular skill sets within the essential functions of that job. It’s one thing if these tests are being applied in the context of sales force determination. It’s another thing to be applied in an engineering context or in a data entry job or in another type of job. So we know that these are relatively widespread and we do know that they tend to, because they are generally focused on the nature of the employee’s social interaction, the nature of the employee’s private life, the nature of the prospective employee, to screen out many individuals on the autism spectrum and with other social communication disabilities or with other invisible disabilities.

MR. ISHIMARU: Very good. Thank you very much. Very helpful.

Time Magazine picks up “I am Autism” protests

7 Nov

Time magazine has an article online today, ‘I Am Autism’: An Advocacy Video Sparks Protest. The article notes the protests staged in response to the I Am Autism video. (I have made my own position clear on the video Autism Speaks media campaign…I am autism, Why I don’t like “I am Autism”, I am autism video removed from Autism Speaks’ website…or is it?, The Autism Speaks bait and switch with I am Autism, and ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices.)

Time starts out with the controversies in the autism communities:

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

Time has comments from the Autistic Self Advocacy Network’s Ari Ne’eman.

Some autistic “self advocates” are furious over the tone of the video. “We don’t want to be portrayed as burdens or objects of fear and pity,” insists Ari Ne’eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. “Apparently, should my parents divorce, it’s all my fault,” says Ne’eman, who received a diagnosis of Asperger’s syndrome, a relatively mild form of autism, at age 12.

Also, they quote Peter Bell of Autism Speaks:

“I Am Autism,” which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. “It was never intended to have a life beyond that event,” Bell said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. “We are looking at adding individuals with autism to various advisory committees,” he said. The group is also initiating a better outreach to adults with autism.

I would welcome (to put it mildly) Autism Speaks getting some autistic representation in their organization. I think “advisory committees” sounds a bit weaker than the sort of representation I’d want to see, but it is a start.

As an aside, can someone explain this part of the article to me?

He notes that other disability groups have moved away from using fear and pity in their media campaigns. (See the best and worst Super Bowl commercials of 2009.)

OK…I’ll grant you that Super Bowl Commercials are not big on Pity and Fear, but it just doesn’t seem to fit the story.

Time has linked to protest videos “I am socks” and “I am Autism Speaks

Bye bye Aspergers?

4 Nov

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

Temple thinks that the AS community is too large and too vocal to simply disappear but I think she’s missing the point somewhat. The point is (in my opinion) neatly encapsulated by Ari. He points out that AS isn’t disappearing, its simply formally becoming ‘part’ of autism. Something the vast majority of the autism and autistic community have always known it is. To answer Temple directly, the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism community.

NB: this post first erroneously stated Temple Grandin had an AS diagnosis. This is now corrected.

ASA-York billboard to come down

20 Aug

Just got this story in my inbox: After objections, autism billboard coming down.

As has been discussed here and elsewhere, ASA-York had a billboard that, well, was offensive to many autistics.

“It seems to send a message that we aren’t fully present in our own bodies,” said Ari Ne’eman, president of the Autistic Self Advocacy Network. Autism York might have been shooting for an “edgy” message, but its billboard was eerily reminiscent of the NYU Child Study Center’s ransom-note-style advertising campaign in 2007, Ne’eman said.

ASA-York has agreed to remove the billboard:

Autism York has agreed to take down a controversial billboard on Route 30 after disability rights advocates said the sign unfairly compares autistic people to kidnapping victims.

I appreciate them pulling the billboard.

Working together to advance respect for autistics

17 Aug

It was over before I knew it had happened. And it ended well.

Joe over at the Club 166 blog spotted a billboard that was, well, rather reminiscent of the “Ransom Notes” campaign billboards that caused a great stir in the autism communities. It appears that Joe spotted this billboard in Lancaster County, Pennsylvania:

York ASA Billboard

York ASA Billboard

Well, Joe blogged it as Could We Have A Little Originality, Please. That was Friday. He then sent the following letter on Sunday.

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.

Sincerely,

And this led to a “Quick Resolution“.

Along the way, Joe had help from abfh, including her “end of week stupid roundup” post.

Also, ASAN got involved. Here is Ari Ne’eman’s letter discussing what happened:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community’s reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York’s President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

I’m glad to see this advocacy effort pay off so amicably and so quickly.

Obama to sign the International Treaty On The Rights Of Persons With Disabilities

24 Jul

I am one of the many people who feels that America is a place where civil rights are the core of our identity. I also agree with the many people who believe that the key questions facing the autism community are also civil rights oriented.

I am thus of mixed emotions with this announcement: President Obama will announce that he will sign the International Treaty On The Rights Of Persons With Disabilities. This is the subject matter I love to blog. At the same time, I hate to see the U.S. not in a leadership role on such an important subject. We should have signed this treaty long ago.

A press release from the American Civil Liberties Union (ACLU) states:

WASHINGTON – July 24 – At a celebration today of the 19th anniversary of the passage of the Americans with Disabilities Act (ADA), President Obama will announce that he will sign the most comprehensive international treaty on the rights of persons with disabilities. If ratified by the Senate, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) will be the fourth major human rights treaty ever adopted by the U.S. and the first it has adopted in the 21st century. The American Civil Liberties Union welcomes President Obama’s reengagement of the United States in international human rights efforts.

I was forwarded the following email from Ari Ne’eman, of The Autistic Self Advocacy Network:

Hello,

This afternoon, I will be joining President Obama and the leadership of the cross-disability community at a special ceremony at the White House where the President will be announcing the intention of the United States to become a signatory to the UN Convention on Disability Rights. The treaty will enshrine in international law a wide array of rights, some of which are present in the United States already, such as the right to reasonable accommodation, as well as others, such as the right to community living supports as opposed to having only segregated options available, that we still have to fight for in our own country. You can read the treaty yourself by going to http://www.un.org/disabilities/default.asp?id=259. This is an important day for our community and I believe the President should be applauded for taking this important step.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

That felt good to blog.

Joint Letter from Self-Advocacy Organizations to Secretary Sebelius

20 Jul

There has been a lot of online discussion about how Health Care reform will affect the autism communities. This has included a number or recent posts on this blog.

Much of the discussion here and elsewhere has focused on children and, especially, on ABA. There is a lot more to autism and a lot more to health care than just these subjects. Case in point, the letter below.

A number of self-advocacy groups have sent a joint letter to the secretary of the U.S. Department of Health and Human Services (Secretary Kathleen Sebelius). One of these groups is ASAN, the Autsitic Self-Advocacy Network.

(Edit) This is an effort to bring in issues from the Community Choice Act, which includes much that the CLASS act has left out. ASAN has an action alert on this. Please, take the time to sign the online petition.

This is something we all should be getting behind.

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius

Secretary

U.S. Department of Health & Human Services

200 Independence Avenue, SW

Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

* eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

* meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;
* address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;
* address the needs of persons who acquire disabilities earlier in life and won’t qualify because they cannot secure employment;

* provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit; or

* meet the needs of persons with significant disabilities who would require more assistance that would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS. It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.

Sincerely,

Bruce E. Darling

Organizer, ADAPT

Andrew J. Imparato

President and CEO, American Association of People with Disabilities

Ari Ne’eman

President, The Autistic Self Advocacy Network

Brenda Battat

Executive Director, Hearing Loss Association of America

Nancy J. Bloch

Chief Executive Officer, National Association of the Deaf

Kelly Buckland

Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD

Steering Committee Member, National Coalition of

Mental Health Consumer Survivor Organizations

Chester Finn,

President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability