Specific disability advocacy groups gain strength

From Education Week. (Thanks to the Autistic Self-Advocacy Network, ASAN, for this story.)

Groups that advocate on behalf of specific disabilities are proliferating, fueled by a medical establishment that can trace disorders down to their very genes and a communication system that can easily connect people around the globe.

But some advocates worry that too much focus on autism or Down syndrome, even on the presidential-campaign trail, could distract from efforts to support common issues that affect many groups.

The issue is of particular concern in education, because many of the accommodation, inclusion, and differentiated-instruction efforts in schools have the potential to cut across several diagnostic boundaries.

"What's good for kids with autism is good for a lot of kids with developmental disabilities," said Colleen Horton, the director of public policy for the Texas Center for Disability Studies, a part of the University of Texas at Austin.

To suggest a label is all that needs to be known about a child "doesn't do justice to the kids," she said.

Nevertheless, specific disabilities often receive the lion's share of attention, including during this election season.

When Sen. John McCain spoke before a cheering crowd at the Republican
National Convention earlier this month, he made sure to introduce the audience to a Pennsylvania family, the Wimmers, with a special story.

"Jake works on a loading dock, coaches Little League, and raises money for the mentally and physically disabled. Toni is a schoolteacher, working toward her master's degree. They have two sons; the youngest, Luke, has been diagnosed with autism. Their lives should matter to the people they elect to office. They matter to me," he said.

Sen. McCain has also referred to an increase in autism prevalence on the trail, and says he supports more federal funding for the Individuals with Disabilities Education Act.

On Sen. Barack Obama's Web site, the Democratic candidate for president offers a five-point plan for supporting people with autism spectrum disorders, including appointing a federal coordinator to oversee all of the research efforts into the communication disorder. He also says he supports more special education funding.

And in recent weeks, Down syndrome has taken its turn in the media
spotlight, spurred by interest in Republican vice presidential candidate Sarah Palin. Her 5-month-old son Trig has the chromosomal disorder, which typically includes mild to moderate learning disabilities and some physical abnormalities.

Grouping by disability categories is important, but so is working together, said Barbara Trader, the executive director of TASH, formerly known as The Association for the Severely Handicapped, an advocacy organization in Washington that represents people with many different disabilities. People may not be aware of how much they have in common with other families.

"The navigation of the service system is something that is shared by everybody," Ms. Trader said.

But at the same time, some advocates say that it's important to maintain attention on their group's special characteristics.

"There are times when it's very appropriate to zero in on efforts that are unique to autism," said Alison Tepper Singer, the executive vice president for communications and awareness for New York City-based Autism Speaks, the nation's largest autism-advocacy organization.

For instance, there are specific social supports for children with autism that can be used effectively in the classroom, she said. And the organization has also worked hard to educate parents and teachers about appropriate developmental milestones, so that children with autism can be identified sooner.

"We know from our tracking studies that more and more people are aware of autism and the early signs of autism," she said. "But we still have a ways to go."

A few decades ago, there were only a handful of organizations that advocated on behalf of people with disabilities, said Sue Swenson, a former chief executive officer with The Arc, an advocacy organization for people with intellectual and developmental disabilities.

Such "big tent" organizations included The Arc, Easter Seals, and TASH. Now, "we have diagnoses for things we never though of as separate disabilities," said Ms. Swenson, who served as commissioner for the Administration on Developmental Disabilities, a part of the U.S. Department of Health and Human Services, during the Clinton administration.

For example, researchers have said the increase in school-identified autism cases has come with a corresponding decline in the number of children classified by schools as being mentally retarded. ("Research Questions Use of Autism Data," April 19, 2006.)

Some disorders, like Rett and fragile X syndromes, may have once been lumped in with mental retardation or other disabilities, but doctors have identified specific gene mutations that result in these disorders and commonalities among the children with those mutations.

The Internet has also offered an easy way for families of children with specific disabilities to band together for support, Ms. Swenson said. But the increased specificity in diagnosing disorders and the ease of clustering comes with a downside, she believes.

"What parents are not told is that the medical doctors are focused on the diagnosis. The medical doctor has no interest in what ways you are similar to all these other people with disabilities," she said.

Ms. Swenson, who has a son with multiple disabilities, said in her work with The Arc and the federal government, parents would sometimes call and ask which individualized education program was most appropriate for a child with a particular disability.

"I would ask, what are [the children] interested in, what are they good at, what are their strengths, what freaks them out, what are their weaknesses," Ms. Swenson said. "You don't build an IEP around a syndrome."

Groups that represent children with rare disorders are recognizing the importance of coalition-building as a way of amplifying their efforts. Kathryn Schanen Kissam, the chairwoman of the board of the International Rett Syndrome Foundation, said working with other disability groups is something her organization hasn't always done well.

"We feel like we've limited some of our opportunities because of that," she said.

Rett syndrome is seen almost exclusively in girls. It manifests itself in repetitive hand motions and loss of language skills and motor control, and is considered to be an autism spectrum disorder.

But while continuing to push for medical research into specific treatment for Rett syndrome, the organization is also working on a plan to reach out to other advocacy groups, like Autism Speaks and the Cystic Fibrosis Foundation, she said.

The parent-run Rett syndrome organization has just recently grown large enough that it can think seriously about strategic joint efforts, she said.

"For us, it's about learning what to do, and learning who to do it with," Ms. Kissam said.

Even within a disability category, there can be different perspectives on where efforts should be focused.

While Autism Speaks supports, among many goals, a cure for autism, the Autistic Self Advocacy Network promotes quality of life and "systems change" efforts, said Ari Ne'eman, the group's founder and president.

"We have much more of a cross-disability focus," said Mr. Ne'eman, who was diagnosed with Asperger's syndrome, an autism spectrum disorder, when he was 12. And, while improved treatment and educational options are extremely important, autism is not a disease to be cured, he believes.

"Awareness isn't enough. We need to look at acceptance," Mr. Ne'eman said.

Education offers one way for groups with different functions to band together, though such work requires a careful balancing of goals, said Katherine Beh Neas, the senior director for federal and state government relations for Easter Seals in Washington.

Ms. Neas is also co-chairwoman of the education task force for the Consortium for Citizens with Disabilities. The task force includes not just disability advocacy groups, but representatives from school administrator and teacher groups. The organizations work together and come up with consensus statements, but it's not always easy.

"We have to parse our words carefully to make sure a position is presented in a way that everyone's comfortable with it," Ms. Neas said.

A focus on enforcement of certain education efforts could leave state agencies feeling "bashed," she said. "So we always have to be careful in how we can present something."

The concept of "universal design for learning" is one area where the different groups in the education task force have come together in strong support, Ms. Neas said. Universal design for learning advocates creating lessons and classroom materials that are flexible enough to accommodate different learning styles. ("'Universal Design' Concept Pushed for Education," Oct. 31, 2007.)

The task force is pushing to have language supporting universal design for learning added to the federal No Child Left Behind Act, a goal spearheaded by Ricki Sabia, the associate director of the National Down Syndrome Society's policy center in Washington.

Advocates for Down syndrome, like supporters of many other groups, are interested in having more research done into the chromosomal abnormality that causes the syndrome. But when it comes to broader issues of education, there are no issues specific to Down syndrome that could not apply to many other children, Ms. Sabia said.

"If I just went at this for Down syndrome, I don't think I'd accomplish much. [The students affected] are just a small group," Ms. Sabia said. But a concept like universal design for learning is broadly supported just because it could possibly help so many students beyond those with the syndrome, she added.

"It only makes sense to work in that way," she said.