President Obama nominated eight people to serve on the National Council on Disability. All but one have been confirmed by the U.S. Senate. Ari Ne'eman, a 22-year old man with Asperger's Syndrome, has stirred up enough controversy that his appointment has been blocked by one or more Senators.
Ne'eman is the President of the Autistic Self Advocacy Network (ASAN) based in New Jersey. He is known for his views on neurodiversity, the idea that people with autism and other disabilities represent diversity in the broad spectrum of human behavior and thought. Attempts to treat and cure them, he believes, are not only unnecessary, but may lead to their eugenic elimination. He emphasizes working toward acceptance, integration, and enforcement of the rights of people with disabilities. Ne'eman and ASAN believe that funds spent on treatment and cures for autism should be diverted to the goals that ASAN promotes.
Other autism groups, such as Cure Autism Now and the Autism Action Coalition, object to Ne'eman's opposition to autism research. And who can blame them? After all, research into conditions such as juvenile diabetes and a variety of mental illnesses, has increased understanding of the causes for these conditions and has improved treatments by reducing symptoms and making them more tolerable. Research has not resulted in the elimination of people with these conditions as Ne'eman fears for people with autism, and it has certainly brought cures closer to reality. Ethical questions about what we do with the results of research are always present and research into autism is no different.
Ne'eman's views on neurodiversity and autism research and the fact that he is a self-proclaimed advocate for all people with autism should cause families of people with more severe forms of the condition to doubt his ability to adequately represent their family members. Everyone on the Board of Directors of ASAN, the organization that Ne'eman heads, has high functioning autism or Asperger's Syndrome along with multiple academic degrees and accomplishments hopelessly unattainable by people on the low-functioning end of the autism spectrum. And it turns out that ASAN's promotion of civil rights for people with disabilities is highly selective.
In New Jersey, legislation, which ASAN supports, has been proposed to close most of the developmental centers (Intermediate Care Facilities for the Mentally Retarded - ICF/MR) and move the residents to community placements. Advocates whose family members live in these facilities have responded to surveys asking if they want their relatives to move. 96% of those who responded (61% of those solicited responded) say they do not want their family members moved. Their family members mostly have severe and profound mental retardation and many of them are at the far end of the autism spectrum from ASAN's Board of Directors.
What ASAN and many other advocacy groups will tell you is that the U.S. Supreme Court Olmstead decision supports the closure of institutions everywhere and that New Jersey is merely doing what it has been required to do since 1999. What they will not tell you is that the Supreme Court in Olmstead specifically said that its intent was not to force people out of institutions:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. 2176, 2187 (1999).
Olmstead sets up criteria for evaluating a resident's need for community care which includes the condition that the individual (or his or her guardian), does not oppose the transfer from institutional care. Ne'eman, ASAN, and many other advocacy groups have been willing to ignore the rights of residents of ICFs/MR to promote their own ideology opposing the existence of these facilities. The bumper-sticker slogan, "Nothing about us, without us", apparently does not apply to the residents of these facilities, their families, or anyone else who needs the specialized services and placements that these groups oppose.
The idea that Ari Ne'eman is not autistic enough to serve on the National Council on Disability is beside the point. I'm sure he has valuable insights into the treatment of people with Asperger's Syndrome and high-functioning autism, but he does not represent all people with autism any more than I represent all parents whose children have cerebral palsy. The self advocacy movement has ironically allowed self advocates such as Ari Ne'eman to substitute their group judgment for that of disabled individuals, a practice just as bad as allowing doctors, government, insurance companys, or schools to make unilateral decisions about people's lives without ever needing to include them in the decision making or respect the differences in their needs and choices.
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For more information on this controversy, see:
- Erasing Autism? from Newsweek, May 16, 2009
- Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, from the NY Times, March 27, 2010
- See numerous interviews with Ari Ne'eman on YouTube.com
- Life on the other end of the autism spectrum: Planet Autism from Salon.com, September 27, 2003
- Letter to President Obama from groups opposing Ne'eman's appointment
- VOR Olmstead Resources
- New Jersey Choice press conference video of Robin Sims, parent of NJ ICF/MR resident and President of VOR: introduction and extended remarks
The painted boulder on the University of Michigan campus is transformed into a ghastly Easter Bunny.
The Ann Arbor Center for Independent Living (AACIL) offers lots of activities for people with disabilities. Although their focus is generally on people with physical disabilities, they also serve people with other developmental and cognitive disabilities. Even if your child has never participated in AACIL programs, it is worth a look to see if there might be something for a more severely impaired child or adult.
The AACIL also has an email news letter with updates on CIL activities:
eNews for Youth
A Periodic ePublication of the Ann Arbor Center for Independent Living
for Young People with Disabilities
Call to be placed on the email list.
Contact the AACIL at:
Ann Arbor Center for Independent Living
3941 Research Park Drive
Ann Arbor, MI 48108
(734) 971-0277
phone: (734) 971-0826 fax: (734) 971-0277
In an article that appeared in Sunday's AnnArbor.com (3/28/10), Annie Zirkel has hit the nail on the head:
"Raising a child with disabilities is like living in a yard with an invisible fence."
The fence expands and contracts, sometimes fencing in your other children whom you hoped might escape some of the limitations of life with disabilities and sometimes expanding into new possibilities that make life seem a little brighter and less claustrophobic for everyone concerned.
As Annie says, envy of people not confined by the invisible fence occasionally rears its ugly head. Many years ago, I remember going to a party at my daughter's middle school a few weeks before the winter break at the end of February. I was eavesdropping on a conversation between two mothers, one of whom was trying to decide whether her family should go skiing in Colorado or spend the week in a friend's condo in the Bahamas. Oh, please!
My plan was to take every measure necessary to preserve my sanity during the dreaded "vacation". That meant loading the boys into the van for their daily activity, an hour's ride through the countryside with music playing. This we called "airing out the boys" and it had become a ritual for maintaining happiness for them and sanity for us parents on weekends. I also hoped for a few hours of respite care from our wonderful and experienced sitter, but that depended on whether the other families who relied on her had gotten to her first. As for my daughter, I hoped she would have lots of invitations to visit friends. It was much easier to do fun things with her when the boys were in school and she was not.
I avoided most, but not all, of the activities for parents at "regular" school, because I could not get over how well put together and rested parents of "regular" children look. The contrast to my harried and sleep deprived friends from the "irregular" school was too painful and distracting. And, yes, I know that other people have awful things to deal with that don't always show on their faces or in their choice of wardrobe, but I still did not fit in.
Nevertheless, Annie has some wise words for people like me:
"I imagine I will always struggle with the challenges of this invisible fence. But I do take care not to spend too much time envying other's grass because it doesn't make mine grow any better. The best I can do is try to make our yard nicer, keep the edges from closing in, and work to appreciate our rare opportunities — no matter how brief or imperfect — for a change of scenery."
Annie Zirkel, LPC is an Ann Arbor parenting consultant and past editor of “A Different Path,” a Washtenaw newsletter for families raising children with special needs. You can find her at www.practicehow.com or contact annie@practicehow.com .
I have been attending Washtenaw Community Health Organization (WCHO) Board meetings for most of the last year in an attempt to understand and follow changes in the agency during the current economic crisis. Very few outsiders attend these meetings—most of the participants and attendees are either Board members or staff from the WCHO or CSTS (Community Supports and Treatment Services). The Board deals with complex issues concerning money and policy that affect the people they serve but, in my opinion, their decisions are not always anchored in the realities of life that we and our family members face each day. The Board does best when we keep them informed and connected to how their actions affect our family members.
For example, at the end of last summer, there were plans afoot to contract out all the vocational and skill-building programs that were operated by CSTS, a public agency. This was part of the County Board of Commissioners move to close a huge budget deficit. Families went to the WCHO and the Board of Commissioners with heartfelt arguments for why the CSTS programs should not be eliminated or changed. Eventually the CSTS employees' union made concessions to the County Board, their employer, that preserved most of their jobs. Then, the WCHO decided to continue contracting with CSTS for vocational and skill-building programs without interruption. Another outside agency that provides supported employment and skill-building programs for other WCHO consumers, was going to be dropped by the WCHO, which would have caused disruption to the people served by that agency. The outside agency felt that the WCHO had made the decision with inaccurate information. The WCHO then decided to continue the contract without interruption. Not all policy and funding decisions work out as well as this one did, but it would never have happened if no one had spoken up.
WCHO Board funding outlook
During a Board discussion on WCHO funding, the Executive Director Patrick Barrie said that continued federal stimulus funding and Medicaid funds would help the agency (and the state) make it through the next six months. If the health care reform legislation makes it through Congress, there will be many opportunities to expand Medicaid funding and to take advantage of demonstration projects. This could avoid cuts that are under consideration by the Michigan Senate. If health care reform fails, there are other possibilities to consider, (passing out Prozac was suggested) but no one is very optimistic about any of these. [Health care reform did pass, so hold the Prozac for now.]
Recipient Rights Advisory Committee Report
The Recipient Rights Advisory Committee for the WCHO has worked on decreasing the number of complaints having to do with "Failure to Report". (If an employee of a WCHO programs fails to report a possible rights violation, that is in itself a violation of rights.) Through training of people who work in group homes, supported living situations, and in other programs funded by the WCHO, the Recipient Rights Office has emphasized the responsibility of employees to report rights violations that they see in their work with people served by the WCHO. There has been a dramatic increase in the number of rights violations reported, perhaps due in part to this emphasis.
There is concern by the Recipient Rights Committee in the large number of substantiated complaints in unlicensed supported living sites for people with developmental disabilities. There were 71 reported for the last fiscal year. Rights complaints in licensed group homes for people with developmental disabilities came in a distant second, with 26 complaints. Substantiated rights complaints increased 50% overall during the last fiscal year.
The Recipient Rights Advisory Committee believes that there should be further investigation of this problem. Some of the causes of the problem may be outside the scope of the Recipient Rights Office, however. For instance, when there are complaints that services are not suitable to the individual’s needs, it may be that Person-Centered Plans are not adequately addressing the needs of the people served. The cause of the problem may lie with staff training, lack of accurate information to families, misunderstanding of PCP requirements, etc.
The WCHO Board is interested in supporting the idea of further investigation into these problems, but asked that the committee come up with a more specific proposal.
A year ago, the Washington DC Examiner ran a story entitled Special ed integration fails expectations. Schools in Montgomery County Maryland phased out the use of "segregated" (perhaps the word "specialized" is a better term) classrooms for students with severe learning disabilities. The result, at least as far as standardized testing shows, was poor: 100% of the students moved out to regular classes scored at the lowest level on the state math exam, and 81% did as poorly on the state reading test.
Only 25% of teachers use "differentiated" instruction with the LD students, meaning that most teachers did not adjust instruction and assignments to the needs of the students. Only 50% of teachers attended a required training on bringing special ed students into their classrooms.
Parents who objected to the change in policy when it began in 2007, renewed their objections with the poor test results.
The school district, however, said those kids who moved were lucky because in many schools the special education learning centers were "academically inferior dumping grounds for students — often racial minorities — who could have thrived in a regular classroom with proper support." In other words, by its own admission, the district was responsible for some pretty crappy special ed programs. It responded to the problem by moving all the kids into regular classrooms with crappy services.
In another story out of the Washington, D.C. area, Catholic schools are increasingly providing options for special needs children: "Forty-two percent of Catholic elementary schools in the United States had a resource teacher to help students with special needs in 2008-09, up from 28 percent in 2001-02, according to the National Catholic Educational Association."
Parents are motivated by a desire to have a faith-based program for their children, but they are offered special classes and other resources for children with autism, Asperger's, and intellectual disabilities that are not necessarily available in public schools. A fundraising group called the Catholic Coalition for Special Education has awarded grants worth more than $400,000 for schools to hire special-education teachers and help teachers pursue degrees in special education. Families also pay extra tuition for these services.
According to an article in the Houston Chronicle, February 21, 2010, the Texas Senate is studying the feasibility of opening charter schools for students with special needs.
As is the situation in many school districts around the country, including Michigan, parents are frustrated with the lack of options for their special needs children and are pushing for alternatives. A new private school for students with high-functioning autism and Asperger's Syndrome is scheduled to open next Fall in Ann Arbor. There is enough interest in the school to conclude that many students are not getting what they need in public education, despite federal and state laws mandating an appropriate education for all students with disabilities.
In Texas, there are problems with funding charter schools. Charter schools receive the same per pupil expenditure for maintenance and operations as other public schools, but they do not receive capital funding.( see Resource Center for Charter Schools, FAQ) There are also concerns about accountability. Then there is the fear voiced by a spokesman for Advocacy Inc., the Texas equivalent of Michigan's Protection and Advocacy Services, who fears that segregating students could create serious issues with federal mandates.
More than three decades have passed since federal law (the precursor to the Individuals with Disabilities Education Act) guaranteed an appropriate education to all students with disabilities. Included in the law and its regulations is the necessity for school districts and state educational agencies to ensure that a continuum of alternative placements is available to meet the needs of children with disabilities. The continuum required includes instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions. In addition schools must make provision for supplementary services to be provided in conjunction with regular class placement. Placement is based on the Individualized Education Program (the IEP), written by the school and the child' s parents.
It looks like federal law has everyone covered and a mechanism to determine what is best for each child, the IEP. And yet Advocacy, Inc., an agency set up to protect the rights of people with developmental and other disabilities, doesn't have a clue as to how to respond to the dilemma parents face. How did we arrive at this sorry state?
Back in the 1990's a lot of government-funded advocacy organizations along with Protection and Advocacy agencies decided to promote Inclusion, an ideology that says that all disabled students belong in regular classrooms in public schools, regardless of the severity or nature of their disabilities. Sorry, parents and teachers: anything less than full Inclusion is segregation and an outrage against the rights of people with disabilities. (see Inclusion Defined, page 8)
The idea of having a righteous reason to close a lot of expensive programs for kids who might not make it in regular classrooms appealed to many school administrators. Together, the advocates and the schools managed to close many of the specialized schools and classrooms that some parents are now clamoring for.
The issue of publicly-funded charter schools excluding students with disabilities is a problem in both Michigan and Texas and does raise thorny legal issues. Maybe if the advocates and Protection and Advocacy people had concentrated more on protecting rights established by IDEA and other laws against discrimination, rather than promoting an ideology that was bound to lead to the predictable consequences we see today, disabled children and their parents would not have to fight for options and rights already protected under federal mandates.
