White House Interview on Disabilities: Exclusive

Disability Scoop has a scoop -- exclusive interview with Kareem Dale, the White House special assistant on disability policy. In this must-read interview, Dale addresses many key issues, including IDEA, waiting lists, employment, and even President Obama's recent remark about Special Olympics. He says his top priorities are involving more people with disabilities throughout the administration and making sure disability issues are front and center in the president’s overall agenda for the whole country -- from health care to education to employment.

Considering President Obama has been in office for a mere two months -- and he's dealing with an economic crisis -- I like Dale's final thoughts:

"I think in the disability community — from being a person with a disability and from working on the campaign and the transition — I think there is a tendency for people to believe that the glass is half empty and believe that the president or whatever government official is not going to do what they said they were going to do. I think in the first couple of months we’ve seen the president’s commitment to work hard on disability issues.

"It’s always hard to accomplish every single solitary thing by the letter that you say you’re going to accomplish. But I think in the first two months we’ve accomplished an extraordinary amount and we’re continuing to work hard. So I would just encourage the disability community, as hard as it is sometimes, to be patient with us and recognize the great accomplishments of the first two months and just look forward to other things to come down the road."

On Obama, Athletes, and Insults

I'm writing from Buffalo, N.Y., where I'm coaching in the USA Disabled Hockey Festival. I'm surrounded by athletes whose courage and competitiveness would rival that of most professional athletes. They include teams of athletes who cannot walk, but who leave their wheelchairs to play ice hockey with specially designed sleds. (Imagine "Murderball" on ice.) Other teams are made up of men and women with autism, Down Syndrome, and other developmental disabilities. I just had lunch with Max Maksimyadis, the 2008 USA Disabled Hockey Athlete of the Year, a dominating goalie who doesn't even use a stick. His cerebral palsy allows him to use only one arm, and he chooses to use that arm to catch. (Read his inpiring story.)

So I was disappointed to come across the news about President Obama's insensitive insult to all athletes with challenges on the Tonight Show last night, when he referred to his embarrassing bowling performance -- "it was like Special Olympics or something." Tim Shriver, the head of Special Olympics, credited the president for recognizing his gaffe and apologizing even before his interview on the Tonight Show aired. Maria Shriver, Gov. Schwarzenegger's wife and Tim's sister, said laughing at Special Olympians "hurts millions of people throughout the world."



This story will likely blow over after a while, but it really bothers me. I expect that kind of behavior from people who are insensitive to people with disabilities, not from people who I believe are open-minded and accepting of people who are different from them. Your thoughts?

Autism Insurance Coverage -- Did You Say "Over"?

One of the best scenes from "Animal House" is a pep talk by John Belushi's character Bluto to his discouraged fraternity brothers: "Over? Did you say over? Nothing is over until WE decide it is!" View the clip below (with one naughty word starting with "s").


That summarizes how I feel about the battle over insurance coverage for autism in Maryland, which Delegate Kirill Reznick reports will not get out of committee this year. (In each of the eight states that have passed the insurance mandate, the legislation didn't pass the first time it was considered either.) The good news is that the General Assembly passed a commission that will study this and other aspects of autism, and Delegate Reznick and others have pledged to keep this fight alive. We also have a motivated group of parents and other advocates who will continue to do everything they can. In the meantime...

Do you want to tell Carter's parents it's over?

Do you want to tell Drew's parents it's over?

The economy is in the toilet, and some of our elected officials are using that as an excuse to not pass any legislation that has a cost attached to it. But what about the immediate costs to thousands of Maryland parents? These parents are facing the same challenges as other families (declining investments, unemployment, and more) -- but they have the additional cost of providing the care their doctors have told them their children need...costs that insurance companies refuse to cover.

If you don't want this to be over, here's what you can do:
- Join the Facebook page for the Maryland Coalition for Autism Insurance Coverage. We'll keep you up to date and let you know how you can stay involved.
- Go to autismvotes.org/maryland and sign up for email alerts about new developments in Maryland.
- Call or write to your elected officials and tell them you're disappointed that this legislation didn't pass and urge them to support it the next time it's considered. Find your representatives.

If you're not in Maryland, you can:
- Sign up for email updates for your state at autismvotes.org
- Follow autismvotes on Twitter.

Delegate Reznick offers these words of support:
"We have made a great start, and we are well on our way to getting this benefit mandated. I know that for many of you, patience is, unfortunately, not an option. The only thing I can say is that I and other supporters of this bill are planning on working towards our mutual goal over the course of the legislative interim to bring this bill back next session....I urge you to not become disheartened. Democracy is a deliberate, slow, and messy process, but at the end of the day, the right outcomes prevail, but only if the proponents continue to fight until it happens."

Special Assistant for Disability Policy...and Arts?

When Kareem Dale's name showed up in my Google Alerts today, I expected to have a disability update for you, since Dale was recently named the president's special assistant for disability policy. But no, the article from the New York Times was about a new role for Dale -- in a new White House position overseeing arts and culture.

I don't know about you, but in my office, lots of people are taking on multiple roles as budgets tighten and staff departures often create vacancies that can't be filled. The question about Dale's most recent role is whether it will distract him from his duties in disability policy or enhance those duties. For example, what is the role of arts and culture for people with disabilities? What effect can art and music therapy play in education for people with special needs?

Yesterday I met with an organization called Rock Against Cancer, which creates music therapy and other music programs for people with cancer. Their challenge is to communicate the mission as an integral part of treatment, and not just a nice add-on. Especially in this economy, "nice to have" items may be the first things to be cut, and the last to be funded. I've also seen the power of arts and music programs in special education.

What do you think? Is the White House asking Dale to take on too much, or will the two roles complement each other?

Secretary Duncan: "No Child Left Behind" in Need of Reform, Rebranding

In an NPR radio interview, U.S. Secretary of Education Arne Duncan said the No Child Left Behind Act has become "toxic" -- that it's in need of proper funding, reform, AND a new name.

"We are putting dramatic money behind our children, which didn’t happen before, it was largely underfunded," he said. "But in this [stimulus] package there are over $10 billion in additional money for children in poverty, Title 1 dollars, over $10 billion through IDEA [Individuals With Disabilities Education Act]....We want to be much less punitive and reward excellence and really again spotlight those schools and those districts that are beating the odds every single day."

As for the program name itself, he said, "I think it ultimately has to be rebranded. 'No Child Left Behind' has become toxic. And we need to come up with something that’s much more inspiring, something that appeals to the best of us rather than pulls us down."

As a communications professional, I understand the value of rebranding. But Secretary Duncan's remarks reminded me of another rebranding that was recently in the news -- Blackwater, the notorious military contractor, is changing its name to "Xe." Same company, different name. Will it make a difference? If you're interested, this Newsweek article examines Blackwater's decision and the experience of Altria (the company formerly known as Philip Morris) and other rebranded corporations.

Seattle Teachers Suspended for Not Giving Test to Special Ed Students

Two teachers in Seattle who refused to give a standardized test to six students with disabilities have been suspended without pay. Read article. The teachers say they were following the wishes of the students' parents, who knew the tests were inappropriate for their children. Defending the teachers, one parent said, "They're sticking up for my kid and what I want for my child. They know what he can and can't do. They're not just going out on a limb."

Because the test is grade-level-based, the teachers say, it's inappropriate for students with severe cognitive disabilities. "It's really not a one-size-fits-all for kids," one of the teachers said. "It doesn't mean we don't have high expectations; we do. They're just not there yet."

On one hand, the school district says it's important to document success, or the lack of success. (The students affected had all taken the test the previous year and had received zeros.) On the other hand, the parents feel their children are being given inappropriate tests and are being set up to fail. What do you think?

The Downside to Inclusion

Many people view inclusion as a goal for all students with special needs. I'm not one of those people, because my experience as a parent has showed me that all students have their own needs -- and the range of autism is so wide that no one-size solution will meet all students' needs.

A new report on inclusion hit close to home for me, since it looked at Montgomery County, Md. (where I live) and because next year my 5-year-old daughter will leave the safe confines of a special autism preschool for a program (yet to be determined) provided by the county. A year ago, the county had a big push to integrate students with special needs and closed specialized learning centers -- and to say the results are mixed would be generous. Read "Special Ed Integration Fails Expectations," from the DC Examiner.

Levels of academic achievement for the special ed students were very low, but that's not what troubles me. The report says only about 25 percent of teachers used "differentiated" instruction for the special-needs students -- they taught everyone the same way. More disturbing -- just over half of the teachers attended a mandatory training about how to integrate these new students into their classrooms. (Which makes me wonder what "mandatory" means in Montgomery County schools. If a teacher skips a mandatory training, how about docking their pay till they attend a makeup session?)

Kay Romero, president of the county’s PTA, testified to the school board this week in support of an effort to re-evaluate the decision to phase out the learning centers. "Our most complex students should have an educational path that is tailored to their needs, and not tailored to fit a square peg in a round hole," she said.

DC Lagging in Autism Action?

Last week the U.S. Senate passed the District of Columbia House Voting Rights Act of 2009, raising hope once again for DC residents who long for a voice of their own in the U.S. Congress. It's no surprise that residents want the same rights and representation as people who live in the 50 states. So I thought it was interesting timing when I heard from a Special Needs 08 reader who asked, "What's DC doing with autism legislation?"

As a lifelong DC-area resident (I've been a DC, Maryland, and Virginia resident), I've seen that it's easy for people in our area to get involved in national policy without engaging in their own local politics. In the past month, both Virginia and Maryland have considered legislation to mandate insurance coverage for autism. Virginia said no; Maryland is still thinking.

Which brings me to the reader's question: What IS DC doing in this area? My first stop was autismvotes.org, and on the national map, even though DC is there, clicking on it takes you to Maryland. Then I found this summary from the Autism Society. Like other states, DC covers occupational health, speech therapy, and physical therapy -- but not treatment like Applied Behavioral Analysis. DC has no task force on autism. And there is no pending legislation related to autism. Am I missing something? Can anyone from DC enlighten me on any developments parents should know about?

Bill Would Expand Savings Options for Disability Expenses

529 plans have become a popular way for parents to save money for college, because their interest is exempt from federal taxes. Now relief may be on the way for middle-class parents working hard to save money for a family member who has a disability. The ABLE Accounts Act of 2009 (Achieving a Better Life Experience Act) would encourage people with disabilities and their families to put aside money in "disability savings accounts" to save for their future. These benefits would not replace Medicaid or private insurance, but would supplement them.

Autism Speaks has endorsed the legislation. Read more.