Special Needs: The Year in Review

2008 was a notable year for disability policy and awareness. Here are the year's top 10 moments -- politics, policy, and culture -- that show us where we’ve been and where we may be going.


1. Gov. Sarah Palin selected as vice presidential nominee
Say what you want about Gov. Palin’s qualifications and whether her nomination hurt or helped Sen. John McCain’s presidential bid, but her presence on the ticket did more to bring special needs issues than anything else that happened this year. This just barely outranked…


2. Barack Obama elected president
In the long run, the election of Barack Obama will mean much more to the disability community than Gov. Palin’s 15 minutes (or three months) of fame. He will come into office with a clear plan for people with disabilities and a team of people with firsthand experience as both parents and professionals, but also huge budget problems and other challenges. His effectiveness will depend largely on …

3. Arne Duncan nominated to be Secretary of Education
Like many others, I have questioned this decision -– not because Duncan is a terrible choice, but because I (and many opinion leaders who I respect) can find no reassurance that Duncan is the best choice in regard to special education. At this point, it’s too early to tell whether Duncan will be remembered as a champion for the rights of students with special needs.

4. Insurance legislation picks up momentum
This year saw many states require insurance companies to cover the costs for autism diagnosis and treatment -- a big issue that will become even more important with the nation’s economic challenges. Legislation was signed in several states -– most recently in Illinois. Read more.


5. President Bush signs ADA amendments
On Sept. 25, President George W. Bush signed landmark civil rights legislation that extended the reach of the Americans with Disabilities Act. He was joined by his father, President George H.W. Bush, who signed the original ADA Act in 1990. Andrew Imparato, the president of the American Association of People with Disabilities, called this “the most important piece of disability legislation since the enactment of the ADA in 1990.”

6. Sen. John McCain raises autism during presidential debate
I’m ranking this a little lower, but it put autism front and center in the presidential campaign. As much of an impact as Gov. Palin made at the Republican convention when she vowed to be an advocate for families raising children with special needs, it wasn’t until Sen. McCain referenced autism during the final presidential debate on Oct. 15 that it became a centerpiece of his campaign. It was too little, too late, as McCain’s rhetoric did not match his campaign platform.

7. President Bush signs bill banning genetic discrimination
You might not have heard about this, but on May 21, President Bush signed a law that may save your job one day. Anticipating advances in DNA testing, the legislation is intended to protect people from losing their jobs or health insurance when genetic testing reveals they are susceptible to costly diseases. The law forbids employers or insurance companies from denying employment, promotions, or health coverage to people based on the results of genetic tests.

8. Court says NCLB trumps special education law
The No Child Left Behind Act (NCLB) has its good sides and bad sides. In one discouraging development, a federal appeals court in Chicago in February ruled that mandates under the Individuals with Disabilities Education Act “must give way” to the provisions of NCLB since it is a newer law. Two Illinois school districts and four families had claimed that NCLB’s testing requirements conflicted with the mandate for individualized education programs. The districts has missed targets for progress largely because of poor performance by students with disabilities, which NCLB says has be counted in efforts to hold schools accountable. The National Council on Disability released a report in January 2008 saying NCLB has benefited students with special needs.

9. “Tropic Thunder” unleashes storms of protest
A coalition of disability groups called for a boycott of the movie “Tropic Thunder” because of its use of the word “retard” and its characterization of Ben Stiller’s character Simple Jack. Read Susan Senator’s column about her own reflections and the numerous comments it provoked.

10. Athletes inspire in the “other” Olympics in Beijing
Though they were overshadowed by Michael Phelps and the other Olympians in Beijing, the athletes of the 2008 Paralympics provided plenty of inspiration themselves. Read about 16-year-old swimmer Yip Pin Xiu, who uses a wheelchair on land but became Singapore’s first-ever gold medalist in the Paralympics.

What did I leave out? Feel free to add a comment.

Disability Groups to Obama Team: We Want a Voice

Saying the disability community is underrepresented in decision-making by the presidential transition team, a group of disability organizations is calling for more inclusion, job for people with disabilities in the new administration, and a domestic policy adviser who is knowledgeable about disability issues. The groups include the American Association of People with Disabilities, National Council on Independent Living, and Special Olympics. Read their letter.

Military Families Lack Health Coverage for Autism

For reasons no one can explain, autism is diagnosed among the children of military families at nearly double the national rate -- 1 in 88 compared with the national estimate of 1 in 150. And according to an article in U.S. News & World Report, the military's health system is failing these families.

Check out these numbers -- 13,243 of the estimated 1.2 million children of active-duty military personnel have been diagnosed with autism spectrum disorder. But only 1,374 (10 percent of these children) are qualified to receive treatment under the extended care arm of the federal health care program TRICARE. One problem is the TRICARE system (like many other health care plans) classifies intensive therapy like ABA as "education" rather than a medical necessity. In the article, Stuart Spielman, senior policy adviser for Autism Speaks, says, "Think about the extraordinary sacrifices that military families make. If we're asking someone to risk his or her life in Iraq or Afghanistan, do we not have an obligation to help their families?"

Read the article, "Military Parents Battle the System to Help Their Autistic Children."

History Says: Advocacy Starts with You

Do you think you can't make a difference as a disability advocate, especially if you're busy helping a person (or people) with disabilities in your own family? Think again.

Read "Private Action and Public Policy over 41 Years" and find out why Rud Turnbull, a special education expert at the Beach Center on Disability at the University of Kansas, says his most effective work has been not as a professor, but as a parent. Turnbull, whose 41-year-old son has intellectual disability, autism, and bipolar disorder, says he and his wife Ann have been community organizers for all of those 41 years. "Like other parents," he writes, "we had no choice but to organize our communities, to advocate and build capacity at the local and state levels....Had we not joined with others to create special education services, alternatives to institutions, places of gainful employment, and opportunities for recreation and leisure he (Turnbull's son) would have faced either permanent insitutional placement or a life in our home, isolated and idle."

Turnbull says he's optimistic about the future because of three lessons from history:
1. "Private action -- call it community organizing if you will, has been directly responsible for the policies, practices, and the positive public attitudes that make it possible for today's parents to look confidently toward the future."
2. "Bipartisanship has been the hallmark of progressive disability policy. No political party has any special claim to the past or the future."
3. "Whenever and wherever people not personally affected by disability have organized their communities, especially for underserved residents, they have benefited families and individuals who are affected by disability. That is so because there is a powerful correlation between disability on the one hand and poverty, single-parent status, and ethnicity on the other."

If you're the parent of a child with a disability, remember this. "When we acted for our son," Turnbull writes, "we acted on behalf of others with disabilities and their families....Private action for progressive policy has been a mutual responsibility."

I'll put that another way. When you fight for your own family's rights and needs, know that your advocacy can benefit many other families.

Former Special Ed Teacher on Obama's Education Secretary

Besides being an excellent writer, blogger and former special education teacher Sue J has a good perspective on President-elect Obama's selection of Arne Duncan to be the secretary of education. She concludes:

"I’ve been there. I have seen a child’s face light up when he or she 'gets it.' And I have also seen them give up when the lesson moved too fast or was presented in a way they could not understand due to their disability. It doesn’t have to be that way, and to see Barack Obama name someone who (A) has no teaching experience, and (B) is a part of this corporatization of education, makes me wonder where the 'Change' is."

Chicago Analysis: Duncan Unimpressive on Special Needs

Catalyst Chicago, which reports on Chicago school reform, examines Duncan's record on special needs. Some highlights (or maybe lowlights) from this report:

"One area where there was no improvement or reform under Duncan was special education, long a trouble spot for CPS. Performance continues to be dismal. Fewer than 25 percent of elementary students receiving special education services met state standards last year; less than 10 percent of those in high school did. Half of high school students with learning disabilities drop out; only a third of those who graduate enroll in college, most in two-year programs, according to 2007 data.

"The average performance gap on state tests between students in special education and those who aren’t is 45 points -- a gap that has widened during Duncan’s tenure and that is higher than the statewide average. Overall, about 12 percent of CPS students receive special education services (11 percent in elementary schools; 16 percent in high schools). In some high schools, as many as one in three students are in special education."

This is part 2 -- read part 1 for other aspects of his record.

You know I'm an Obama supporter, and I've been encouraged by most of his actions since being elected. It bothers me that the one selection I have concerns about happens to be one of the most important positions for families with special-needs children. I continue to look for reassuring signs that he will make special ed a priority -- have you seen any?

Arne Duncan, Education Secretary -- What Does It Mean for Special Ed?

On Tuesday, President-elect Obama announced he will appoint Arne Duncan as head of the Department of Education. As the head of Chicago Public Schools since 2001, Duncan has earned a reputation as a tough reformer who's not willing to enforce high standards, but also sees education as a civil right for all students. But his views on special education have not been widely reported.

One source I often turn to is Christina Samuels, who writes the special education blog for Education Week. But her only item about Duncan is titled "So What Do We Know About Arne Duncan?" In researching his positions on special education, she writes, "I've been scouring the web and have come up empty" -- and she's invited readers to post comments about what they know. So far, no one has. Over at Autism Vox, Kristina Chew asked the same thing, and got just this one response: "Chicago Public Schools does have an autism program, but I don’t know any more information beyond the fact that it exists. I also know that cotaught classrooms, where special ed and regular ed students learn in a room with one regular ed teacher and one special ed teacher, are becoming very popular in Chicago Public Schools. CPS was a mess in the early '90s - he really did help turn it around, although they definitely have a ways to go." That's hardly a rousing endorsement.

Who can enlighten me, Christina, Kristina, and all the parents of special needs children who will be affected by this appointment? If special ed just isn't his thing, needs to appoint a real leader to the Office of Special Education Programs and even consider elevating that position.

Autism Twitter Day -- another way for people to connect

Tuesday was Autism Twitter Day, but that doesn't mean much to you if you don't use Twitter. I didn't either until a few weeks ago, but there's an amazing community of special needs parents and experts there. This slideshow introduces the basis concept of Twitter and summarizes the day. Twitter may or may not be for you -- it's just one more social networking tool -- but I like its immediacy and simplicity.

For Autism Twitter Day, I led a discussion on therapy dogs for people with autism. If you have a Twitter account or want to create one at Twitter.com, follow me at MMiller20910 (my personal account) and childrenshealth (my work account).

Autism Twitter Day, A Digital Scrapbook

View SlideShare presentation or Upload your own. (tags: twitter social)

Insurance Coverage for Autism Therapy in Utah?

Hot on the heels of the new legislation in Illinois, "Clay's Law" is being drafted in Utah to mandate insurance coverage for ABA treatment for children under 5. ABA (applied behavioral analysis) is an intensive one-on-one therapy that has been proven effective for many children, but it is also very expensive.

Let's hope this trend continues. What's happening in your state? Check this state-by-state map from AutismVotes.org.

Should You Tell Your Work If You Have a Child with Special Needs?

Sunday's Boston Globe featured an article titled "A Parental Juggling Job: Workplace Stigmas Add to Struggles of People with Disabled Children." If you're a parent raising a child with special needs, it makes sense to tell your boss and work colleagues, right? Maybe, but maybe not.

In a survey of 400 parents, "27 percent of parents caring for children with serious emotional and behavioral disorders have been terminated because of related work disruptions....Because of the demands of care, nearly half of the parents had to quit a job to care for their children, and 11 percent couldn't find work."

And that's not all: "While such parents tend to face greater stigma than those whose children have physical disabilities, both groups often have difficulties finding and keeping work because of their child's condition....More than a fifth of families raising children with disabilities live in poverty, compared with nearly 13 percent of families raising children without a disability, US Census data show."

I don't know if there's a legislative solution to this -- it's more about understanding and accommodation for good employees, but I guess the ability to offer that flexibility differs depending on the industry.

Toys for Kids with Special Needs

With the holidays approaching, I'm going to take a break from politics to share some information about toys for children with special needs. Maybe it will be helpful for your own child or someone you know.

- AblePlay offers online ratings of toys' appropriateness for children with special needs. It's an independent company -- they don't make and sell their own toys.
- They don't make it easy to find, but Toys R Us has a section for "differently abled toys." An awkward name, but you get the point.
- The Dragonfly Toy Company has toys that help develop motor skills, provide visual stimulation, and encourage exploration. (Unfortunately, it looks like a lot of toys are no longer available.)
- Enabling Devices is a great resource. They feature adaptations of classic board games like Hi Ho Cherry-O.

If you have others to recommend, add them to this post!

Freed of Handcuffs, Governor Blago Signs Autism Bill

It's a good -- and weird -- day for autism advocates. After being arrested Tuesday on federal corruption charges and released on bond by a Chicago judge (see my previous post), Illinois Gov. Rod Blagojevich signed a law expanding insurance coverage for children with autism. Here's the text of the new law.

President-elect Obama, Illinois' lieutenant governor, and others are calling for Gov. Blagojevich to resign -- and he should as soon as possible -- but we can at least celebrate the fact that one of his last actions will allow 4,500 families to get coverage of up to $36,000 per year for autism diagnosis and treatment.

Can He Sign Autism Legislation in His Prison Cell?

Illinois Gov. Rod Blagojevich was arrested today on federal corruption charges. It wasn't enough that he had sole power to appoint a replacement for President-elect Obama's Senate seat -- he also wanted to profit financially from it. Apparently, in a secretly taped conversation, he called the Senate seat "a bleeping valuable thing. You just don't give it away....I've got this thing and it's bleeping golden."

Will he resign? Will he be impeached? At this point, no one knows.

The real question is why should YOU care? You may remember that shortly before Thanksgiving, the Illinois legislature sent a bill to the governor to require insurance companies to cover autism diagnosis and treatment up to $36,000 a year -- benefiting about 4,500 families in the state. The governor's office said he supported the legislation and planned to sign it. With the governor tending to personal matters he brought on himself, I don't care whose name is on the bill -- I just want it to be enacted as soon as possible.

I assume the governor wasn't reading all of his mail himself anyway, so please take a moment to express your support for the legislation through Autism Votes.

If you care, read some of the gory details about what federal officials have called a "political corruption crime spree."

Disabled Workers Are "Last Hired, First Fired"

In an article titled "Recessions Bite Hits Americans With Disabilities Extra Hard," Amanda Ruggeri of U.S. News & World Report says people with disabilities are losing jobs at a rate higher than nondisabled workers. "People with disabilities tend to be the last hired and the first fired," according to Rick Diamond, director of employment services at Disability Network/Lakeshore in Michigan.

This problem is even worse when you consider the vast employment gap that already exists. In 2007, the employment rate for working-age people with disabilities was 36.9 percent (lower than in the previous year). By contrast, the employment rate for people without disabilities was 79.7 percent (the same as the previous year).

People with disabilities are also facing cuts in government funding that threaten programs that provide needed support. I don't see any easy answer to this problem. What do you think should be done?

Policy Ideas -- What Do You Think?

The Consortium for Citizens with Disabilities has made detailed recommendations on disability policy for the Obama-Biden transition team and the 111th Congress. The group's 47-page document covers topics including autism and other developmental disabilities, education, employment and training, health, housing, long-term services, disability rights, Social Security, and much more. Does it cover the topics you care most about? If not, what's missing? And what are you doing to make your voice heard?

Palin Does Good -- Really

During the campaign I occasionally (or frequently) criticized Gov. Palin for her past record on many of her key issues. I suspect she will not be a prominent figure in this blog now that she's back in Alaska, but when she (or Sen. McCain) take action related to special needs, I'll weigh in and invite your comments.

And today's one of those times. To her credit, Palin this week unveiled a plan to invest an additional $5 million to support children's health -- including areas like autism screening, Head Start, obesity prevention, a test program of half-day preschool, and expanded insurance under Denali KidCare (which covers low-income children and pregnant women). The proposed increase to Denali KidCare would cover an additional 1,300 children and about 225 pregnant women. Interestingly, last year Palin opposed an increase in the program despite the fact that the state had a large surplus because of high oil prices.

Today, as the price of oil drops, many Alaska officials worry there may be no additional money for programs like these -- and in fact, some services may need to be cut. Her proposed increases would take effect in the next fiscal year -- at which time a balanced budget would depend on oil prices being $20 higher than the current $40 or so.

If you miss seeing Palin on your TV every day, here's a video of her announcement.

Your Seat at the Table

In the spirit of transparency, the presidential transition team has announced that all policy documents from official meetings with outside organizations will be publicly available for review and discussion on change.gov. The transition office says, "We're inviting the American public to take a seat at the table and engage in a dialogue about these important issues and ideas -- at the same time members of our team review these documents themselves."

Read the memo from transition head John Podesta to all transition staff, and get more information (and a video) here.

Some materials are already available in the new "Your Seat at the Table" section of change.gov. If you see something interesting you'd like to raise on this blog, send me an email or add a comment to this post.

Mom to McCain: "Don't Forget About Us"

Linda Wessels from Iowa supported Sen. McCain partly because he promised to support kids like her son Sam, who has autism. The campaign may be over, but her fight for increased autism support is not. She's started a petition to hold McCain accountable for the the promises he made on the campaign trail to her and other parents. Wessels says, "I want to show him we are still out here in massive numbers and we still need him to champion our cause."

You can sign her petition here.