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.

Maybe You Can't Fix the Economy, But Here's What You CAN Do

I'm going to take a break from news about the transition, state budgets, policies, and politics to encourage you to make a difference -- bigger than you think you can -- this holiday season. This year, it's more important than ever to support the nonprofits you care about. For many, donations are down just at the time the demand for their services are rising. If you can't afford to make a charitable contribution, consider volunteeering for a local organization that provides food, clothing, or other services to people in need.

This article from the Seattle Post-Intelligencer quotes the executive director of Northwest's Child, which supports families whose children have cerebral palsy, autism, seizure disorders, and other disabilities. "We're seeing more families in crisis than ever before...and our families were in crisis before the economy crashed, dealing with the day-to-day crises and expenses of special-needs children....With our families, it isn't just about whether they can afford day care, it's about whether they can keep their child."

And I don't usually mix my personal blog with my professional job, but I work at Children's National Medical Center in Washington, D.C., and around this time of year I see so many children who won't be spending the holidays at home. Instead of enjoying a traditional holiday season, many parents will be sitting at their child's bedside waiting to hear they can go home soon. Here are two ways you can help kids here in the nation's capital:
- Support the Washington Post Campaign, which for nearly 50 years has raised money for parents who can't afford to pay for their children's care. Thanks to support from the community, Children's never turns away any child in its region, regardless of their ability to pay.
- Make a general donation to Children's National Medical Center to support world-class care and research. I started working there because of the great care they provided my daughter -- so it's a cause I really care about.

How Obama Can Boost Support for Nonprofits

"Of the nearly 1 million nonprofits up and running, as many as 100,000 will fail over the coming six months," writes Paul Light, professor of public service at New York University's School of Public Service. In his op-ed in the Washington Post, Light says "Obama Must Mobilize Supporters to Help Nonprofits." With a powerful call to action, Light says, President-elect can rally "Generation O" to support nonprofits as both employees and volunteers.

Light describes the growing challenges nonprofits face. "Budgets are tight, hiring freezes are in place, and cutbacks are taking their toll on training, information technology, evaluation and even fundraising. Driven by increasing demand for basic services, many nonprofits are shorting their own employees, who are so deeply committed to their missions that they are willing to take pay cuts to help the needy."

What can you do? Here are my thoughts.

Another Disability Advocate in the White House: Lisa Brown, Staff Secretary

If you need more evidence that the Obama White House will have plenty of people who have a real understanding of people with disabilities, here's another new appointee you should know about. Profiled today by the New York Times, new staff secretary Lisa Brown was an in-house counsel to Vice President Gore and a member of the Executive Board of the President’s Committee for Employment of People with Disabilities. Previously, when she was a partner at the Washington law firm of Shea & Gardner, she active in pro bono work, focusing on cases that involved disabled people.

By the way, the "staff secretary" is a much more senior job than it sounds. The Times profile calls this position "the nerve center of the White House and the gatekeeper for nearly every piece of paper that reaches the president's desk." John Podesta -- former Clinton White House chief of staff and current transition head for President-elect Obama -- held that position in the early days of the Clinton Administration. And he was my boss's boss.

She will also bring a mother's perspective and a healthy appreciation of science to the job -- her husband is the head of the cancer center at the University of Maryland, and they have a 6-year-old son.

Autism Legislation, State by State

What's happening in your state with autism legislation? Find out with these new resources from the National Conference on State Legislatures. Use this searchable database to find autism-related legislation by state and by topic (awareness, education, financing, health and human services, infrastructure, insurance, professional training, screening, or miscellaneous). Or just select your state and "any" to find all legislation. And here's NCSL's overview of state legislation.

Budget Crisis Threatens Uninsured and People with Disabilities

"If federal help doesn’t arrive soon, things could get worse for poor people who depend on public health insurance." While scary, this article from stateline.com is worth reading. While we all keep an eye on the national economy, remember that some of the real economic impact will be felt at the state level. States are talking about freezing their child health insurance programs, cutting services,

States are asking for two things. First, they want reauthorization and expansion of the State Children's Health Insurance Program (SCHIP), the federal program that gives states money to provide health insurance for children in families that earn make too much to qualify for Medicaid. Twice, President Bush vetoed bills to do just that. It needs to be reauthorized by March 31. Second, the states want a temporary increase in the federal share of Medicaid, which costs the states and federal government $330 billion each year.

Mom, Advocate Given Key Transition Role

Loyal reader Stephanie H. passed along this news about another member of the Obama transition team. She tells me, "Sharon Lewis is someone from my local area in Portland, Oregon, who is a parent of a child with a disability that graduated from the advocacy training I just went through a few years before me. She has done a lot of good things in our local community before heading on to politics and is a devout believer in full inclusion and fully funding IDEA among other things. She lives and breathes the book Getting to Yes and she knows how to get things done. She is definitely one to watch."

Lewis, the former senior disability policy adviser for Chairman George Miller (D-CA) on the Committee on Education and Labor, has been named to the transition's Education Agency Review Team. She's the lead person reviewing the Office of Special Education and Rehabilitative Services (OSERS) and other disability-related matters in the Department of Education. OSERS includes the Office of Special Education Programs, the Rehabilitation Services Administration, and the National Institute on Disability and Rehabilitation Research.

Thanks, Stephanie!

At State Level, Progress in Insurance Coverage -- But More Is Needed

When you consider the real issues that affect families raising a child with special needs, the high expense for medical care and therapy is always near the top of the list. At least 26 states and the District of Columbia require insurance companies to cover people with autism, but that leaves a lot of states that don't.

Illinois is the latest state to make some progress in this area. Under legislation approved by the legislature this week and expected to be signed by Gov. Rod Blagojevich, insurance companies will be required to cover autism diagnosis and treatment up to $36,000 per year. It will cover these services for people up to age 21, and about 4,500 families will qualify for coverage. In the past two years, Texas, Pennsylvania, Arizona, Florida, South Carolina, and Louisiana have passed similar laws, some covering up to $50,000 a year per child. Autism Speaks has endorsed bills in New Jersey, Virginia, and Michigan and is targeting at least 10 more states in 2009, including New York, California, and Ohio.

For many children, ABA therapy (applied behavioral analysis, administered by trained therapists) is the most promising intervention, but it's very expensive, and many insurance companies refuse to cover the costs for it -- despite the fact that ABA has proven to be helpful for many children. According to Elizabeth Emken, vice president for government relations at Autism Speaks, "It's the No. 1 thing we hear from parents. What's more difficult than knowing there's an effective treatment for your children, but you can't afford to offer it to them because it's not covered by insurance?"

A proposed law in Oklahoma faces an uphill battle, but after being defeated in the last session, "Nick's Law" emerged as the very first piece of legislation proposed in the current session. (I have relatives in Oklahoma fighting hard to get this law passed, and if you're a resident, please contact your representatives.)

What kind of law applies in your state? Here's a state-by-state map from autismvotes.org. Need some talking points to advocate in your state? Autism Speaks has a 23-page document titled "Arguments in Support of Private Insurance Coverage for Autism-Related Services."

For a good overview of the issue, read "Parents Press Insurance Coverage" from CNN.

Help Wanted

Blogger Stothers makes a good point: "Time is ripe for urging, encouraging, pushing, or even hectoring folks to start applying for jobs in the new and historic Obama Administration. People with disabilities especially ought to be sending resumes to change.gov ASAP."

So read "How to Get Hired in Washington," from U.S. News & World Report, get on over to change.gov, and get your name in the mix! Sure, it's going to be super-competitive and there are no guarantees, but what do you have to lose?

Good for Nevada Gov. Gibbons

I mainly focus on national policy, but I want to draw attention especially to positive news at the state and local levels. Nevada Gov. Jim Gibbons signed an executive order Wednesday creating the Commission on Autism Spectrum Disorders, charged with implementing recommendations from the Nevada Autism Task Force. Commissions and task forces may just sound like more bureacracy, but the task force had made 146 recommendations to improve autism services and screening, and it's good they won't be forgotten now that the group is no more.

Another Pick Who Gets Disability Issues

I'm looking out for signs that President-elect Obama is taking disabilities seriously in his very first steps. In addition to appointing David Axelrod and Michael Strautmanis to senior positions, he's put Seth Harris, his campaign's co-chair for disability policy, on the working group that will help set budget and personnel decisions for labor, education, and transportation agencies.

The Washington Post reports: "Seth Harris...is a professor and the Director of Labor & Employment Law Programs at New York Law School. He is also a Senior Fellow of the Life Without Limits Project of the United Cerebral Palsy Association and a member of the National Advisory Commission on Workplace Flexibility. He served as the Chair of Obama for America's Labor, Employment, and Workplace Policy Committee and a Co-Chair of its Disability Policy Committee. During the Clinton Administration, he served as counselor to the Secretary of Labor and Acting Assistant Secretary of Labor for Policy, among other policy-advising positions."

Harris's writing includes "The Misdirected Debate Over the Economics of Disabilities Accommodations," an essay that cites the inadequacy of employer-provided health insurance and discrimination in the workplace.

Another One to Watch

I was happy to see that Michael Strautmanis was appointed to a key position in the presidential transition office -- as the director of public liaison and intergovernmental affairs. Strautmanis, 39, was the chief counsel and deputy chief of staff in Obama’s Senate office and has known Michelle and Barack Obama since 1991. Also, as I've mentioned before, one of his three children has autism. If Strautmanis takes a leadership position in the White House, we'll have at least two fathers (him and David Axelrod) who have firsthand experience with special needs.

Here's a good profile of Strautmanis.

Blogging in My Pajamas: How Did Palin Know?

Well, I knew that Gov. Palin wasn't a fan of those wacky mainstream media types. But in an interview with Greta Van Susteren, she referred to bloggers as "kids in pajamas sitting in the basement of their parents' homes" making up rumors and lies about her.

For the record:
1. I am not a kid. (I'm 44.)
2. I don't blog in the basement of my parents' house. (I have my own house, and my parents' house doesn't have a basement.)
3. Sometimes, but not always, I blog in my pajamas.

Watch the full interview if you're interested.

Among Legal Reforms, More Support for ADA Enforcement Possible

According to the National Law Journal, the new Democratic leadership in the White House and Congress could mean some important changes in workplace law. One position that President-elect Obama has supported is removing a $300,000 cap on compensatory damages and punitive damages for violations of Title VII and the Americans With Disabilities Act. Another is requiring public and private employers with more than 15 employees to provide paid sick leave to full- and part-time employees.

The article points out that these are not necessarily the most pressing national issues, but without the threat of a veto by a Republican president, the Democratic Congress will be empowered to gain some quick victories on these and other issues.

The Federal Times forecasts other possible changes in the federal government, including hiring more staff at the Social Security Administration to tackle a large backlog of disability claims.

THE FUTURE OF THIS BLOG

There's a reason I named this blog "Special Needs 08." I thought it would have an expiration date of Nov. 5, 2008. My intention was to work hard throughout the campaign to report on the candidates' records, plans, and statements on these important issues, so voters could make an informed decision. Every day, I reviewed news and blog stories, examined the candidates' past positions, and reported on the news I thought was most important.

So now my job is done....or is it?

In a recent post, I encouraged people who care about special needs issues to stay involved -- to advocate for the things they care about, to speak out, and to hold their elected officials accountable. After several readers asked me to keep blogging, I decided I have no other choice. Since I'll be following these issues anyway, I'll continue sharing news and commentary with you.

I do expect that I will post less frequently. Instead of every day, it may be once or twice a week. So to stay informed, I encourage you to sign up for email updates, which you can do in the right column. And please contact me with suggestions about what you'd like to hear more about, and send me interesting links you find.

As for the name, it's still going to be "Special Needs 08," to commemorate the historic campaign that inspired me to start this in the first place. Thanks for reading, and please come back.

Share Your Ideas with President-elect Obama

When's the last time an incoming president asked for your ideas about disability issues (or any issues)? Well, here's your chance to have a say. The new change.gov transition site says: "There is no more important resource for changing the direction of this country and defining the ideas that will transform America than the American people. Tell us your ideas and be part of the change you want to see."

So get over to change.gov, submit your ideas, and tell us what you offered.

Watch this Man

One of the superstars of the Obama campaign is his senior strategist, David Axelrod. As a political consultant based in Chicago, a former Chicago Tribune reporter, and a passionate Bulls fan, Axelrod has resisted previous offers to relocate to Washington, but people are starting to speculate about what role he may play in the Obama Administration. Here's an article from Chicago Business News.

Whatever he does, in Chicago or Washington, Axelrod will likely have an influence in the administration's policy related to disabilities. His daughter, in her 20s, has developmental disabilities, and Axelrod's wife Susan co-founded Citizens United for Research in Epilepsy.

Stay tuned.

UPDATE: Alexrod has accepted the position of senior advisor in the White House.

Will Obama Administration Step into Autism/Vaccine Controversy?

There is no question that among the special needs community, the presidential campaign has been divisive -- with parents and other advocates passionately supporting Sen. Obama (because of his positions on autism and disabilities) or Sen. McCain (particularly after his nomination of Gov. Palin).

But if you think that was controversial, just wait for the vaccine debate to heat up. You may know that many parents are convinced that vaccines are a contributing cause to autism (and you may be one of those parents). On the other side of the debate are scientists and organizations (including the Centers for Disease Control and Prevention) that say there is no medical evidence of that link.

Early in the campaign, McCain mentioned a possible link, until his advisors informed him there was no solid evidence, and he backtracked. Obama was asked directly about the connection at a campaign rally, and he didn't commit either way, but said more research is probably needed.

The reason this could become an issue very soon is because there are rumors that Obama may nominate environmentalist Robert Kennedy Jr. to be head of the Environmental Protection Agency (EPA). Kennedy, if you don't know, is the nephew of Sen. Ted Kennedy has actively campaigned against the CDC, the World Health Organization, and the pharmaceutical industry because he is convinced they are covering up a link between vaccines and autism. Some think if Obama appoints him, it will be an implied endorsement of that controversial position. According to the Huffington Post, Kennedy said he has not been asked but would say yes if offered the position.

UPDATE: More on this issue from Daily Kos -- "Divided We Fall."

Autism: A Global View

While many people focus on autism as a national issue, President-elect Obama will have the opportunity to raise awareness globally.

Ivan Corea of the UK Autism Foundation released this message: "I congratulate Barack Obama for winning the presidency of the United States of America, we hope that the winds of change will involve parents, carers, children, and adults with autism and Asperger’s Syndrome. I urge President Obama to make a clear statement to the world on autism on the United Nations World Autism Awareness Day on April 2, 2009, and show the international community that he plans to take genuine and real action on autism."

If You Care About Special Needs, Today is the Beginning, Not the End

Now that the election is over, here are 10 ways you can make a difference -- now

The campaigning is over, but now the hard work begins. You can't separate special needs issues from the numerous problems President-elect Barack Obama will inherit -- from a costly war to growing economic concerns. Will the economy allow him to provide middle-class tax relief, reform our health care system, fully fund the Individuals with Disabilities Education Act (IDEA), and the other things he's proposed? I have no doubt he wants to do all of these things and will do his best, but the economic reality is different from when he first developed his policy proposals.

As I've said several times on this blog, I am not a one-issue voter, even though I care deeply about issues related to disabilities. The best thing for families dealing with special needs will be what's best for all families -- including a strong economy, dependable health coverage, and fairness in all government programs.

In writing this blog, I've been impressed with the level of passion and involvement among other parents who are raising special needs children, as well as family members who are supporting adult relatives with disabilities and people who are living with disabilities themselves. Now that the election is over, I hope this level of civic engagement will continue -- and grow.

Regardless of which candidate you supported, here are 10 ways you can stay involved and make a difference:

1. Write a letter to President-elect Obama to congratulate him and remind him of the promises he made to people who are affected by disabilities, of all ages. Tell him to keep these issues in mind as he makes difficult budget decisions.

2. Write a letter to Sen. McCain, reminding him of the positions he took during the campaign. Urge him, as senator, to support full funding of IDEA and ask him to reconsider his opposition to the Community Choice Act, which would support community housing for seniors with disabilities.

3. Write a letter to Gov. Palin -- this is important. Thank her for raising awareness of special needs issues during her campaign. Encourage her to fulfill her pledge to be an advocate for people with special needs. She doesn't have to be vice president to be an advocate -- the campaign has given her a national profile, and what better way to use that visibility than to advocate for IDEA funding and other needed support? And as governor, she can set an example for other states by eliminating Alaska's waiting list of people who need disability services.

4. While you're at it, contact all of your elected officials about the issues you care about. Get their names and contact information at congress.org. You can even use an online form there if you don't want to send a paper letter.

5. Don't forget that "all politics is local." If you're not already active, get involved with your local schools, community organizations, and government agencies that provide and advocate for disability programs. A great place to start is The Arc of the United States, which has chapters in every state and the District of Columbia. Find your chapter.

6. Connect with others, online and in person. Attend meetings, talk with other parents, share your experiences and challenges, and support each other.

7. Can't we all get along? The weeks and months after an election should be a time of reconciliation. Many people who are passionate about the issues you care about -- family members, neighbors, professional colleagues, and others -- supported the other candidate. If your candidate won, don't gloat. Reach out, reconnect, and focus on what you have in common.

8. Stay informed. There is no shortage of news and commentary. Some of the blogs and websites I recommend are Disability News by Patricia Bauer, Autism Vox by Kristina Chew, Education Week's blog on special education by Christina Samuels, and Disability Scoop.

9. Walk the Walk(s). Get out and publicly show your support for disability services and research. There are plenty of walks and runs, including Autism Speaks' Walk Now for Autism and the National Down Syndrome Society's Buddy Walk.

10. Don't feel guilty if you don't have time to do these things. Remember that advocating for your own child, family member, or any other person in your life can have an impact on many other lives. Do what's best for them, and you'll be helping others as well.

Do you have other suggestions? Post them here. And please share this with others -- you can forward the URL for this abbreviated summary.

Thanks for Reading. Now Go Vote.

Check back on Wednesday for a special message -- and an important assignment. In the meantime, go vote and encourage everyone you know to vote.

If someone you know hasn't made up their mind, please tell them about this blog. And if you're undecided, please review the candidates' plans:
Obama-Biden on Disabilities
Obama-Biden on Autism
McCain-Palin on Special Needs
McCain-Palin on Autism

If you haven't already, read Paul Longmore's analysis of the candidates' positions.

Since I started this blog on Sept. 7, I've had visitors from every U.S. state, Washington, D.C., and 41 other countries. Thank you for reading, and don't forget to check back on Wednesday for a very special message! You can also subscribe by email in the right column.

Obama-McCain Positions on Special Needs Change Pennsylvania Woman's Vote

The Palin Factor will definitely have an impact on this election -- but maybe not the type of impact Palin and McCain would like. An article from The Australian leads with the story of a woman who has a child with autism -- she was a strong McCain supporter who has become an Obama backer after examining their positions on special needs.

Reporter Geoff Elliott had talked to Pennsylvania resident Cindy Sowers, 48, during the Democratic primary, when Sowers was angered by Obama's clumsy comments about rural Pennsylvanians being "bitter." She called Obama an idiot and supported Hillary Clinton in the primaries. When Elliott contacted her again after Obama defeated Clinton in the primary, Sowers said she would vote for McCain.

But a funny thing happened on the way to the voting booth. On Friday, Sowers sent Elliott an email with the subject "I changed my mind." She wrote: "Thought you might be interested on why I changed my vote to Obama. After going to Children's Hospital in Philadelphia to get my grandson tested for autism (waiting list was 1 1/2 years), I thought I would look into how politics would affect disabled children and who would help the most! (Not just talk about it.) My husband is still voting for McCain. But I am not."

One thing that swayed her opinion was this essay from Paul Longmore, director of the Institute on Disability at San Francisco State University. Elliott says: "From Clinton to McCain and now, just days out from the election, a vote for Obama: Sowers' decision is based purely on his policy prescriptions. Like so many others, Sowers is finding that the economic crisis in the U.S. is grinding out whatever sense of security she felt she had left, and she is now attracted to a candidate offering what she considers a life raft on core family concerns, namely health care and education. In this climate it appears to be a winning ticket."

And here's Longmore's most recent essay, reacting to Palin's speech on special needs policy.

Disability Coalition Objects to McCain-Palin Mocking of Disability Rights

"The National Coalition for Disability Rights pushed back today against the McCain-Palin campaign for ridiculing the legal rights of people with disabilities. News reports describe McCain-Palin campaign representative Senator Kit Bond (R-Mo), joining vice presidential candidate Sarah Palin at a rally in Missouri, mocking presidential candidate Senator Barack Obama for stating that he’s looking to nominate judges who empathize with 'the disabled.'"

Jim Ward, the founder and president of the coalition, said "It’s Halloween, and it seems that Sarah Palin’s mask of support for people with 'special needs' is slipping. Despite past pandering to people with disabilities, McCain-Palin are actually opposed to vital disability legislation like the Community Choice Act and they want to appoint judges who will further roll back the civil rights protections of the Americans with Disabilities Act."

Read "Disability Organizations Outraged by McCain-Palin Rally Attacks on the Disabled."

Looking at the Candidates' Records

From the Buffalo News, an op-ed by Jacqualine Berger, a member of the Disability Rights & Concerns Committee of United University Professions, titled "Voters Should Keep in Mind Policies on Disability." Berger takes a look at the candidates' positions and records, concluding with this:

"The nonpartisan group Disabled American Veterans monitors legislators’ voting records on issues relating to disabled veterans. Obama supported 80 percent of the legislative priorities of DAV, while McCain supported 20 percent. Biden and Obama each earned a 'B' rating from the nonpartisan group Iraq and Afghanistan Veterans of America; McCain received a D."

The Obama Campaign Responds

In response to Gov. Palin's speech on special needs, Kareem Dale from the Obama campaign circulated this letter from leaders in the disability community.

The letter links to this side-by-side comparison of McCain's and Obama's plans and records.

The Secret Life of Fruit Flies

Read "Palin Wants to Help Special Needs Kids By Doing Away With Science." In Palin's recent speech, she mocked research on fruit flies and said that money could be spent on autism research. Turns out, fruit fly research has been instrumental in helping improve our understanding of autism. In fact, research on fruit flies is no more unusual than research on mice and rats. Oops.

On Countdown, Newsweek senior White House correspondent Richard Wolfe called this the "most mindless, ignorant, uninformed comment we've seen from Gov. Palin so far....If you give your first major policy speech of the campaign and make this kind of basic error, you either don't have a scientific advisor or you don't have a speechwriter who knows what they're saying." Watch the video here.

Palin Speech Fails to Impress

Fact checking Gov. Palin's speech on special needs, Igor Valsy at the Wonk Room says, "Palin is a confident and compelling spokesperson for special needs children. But what the campaign gains in charisma, it loses in credibility." For example, she talked about "reprioritizing" spending in order to fully fund the Individuals with Disabilities Education Act (IDEA) -- ignoring the fact (or not knowing) that achieving that goal by redistributing the budget would require a 6.4 percent cut in ALL OTHER DOMESTIC PROGRAMS. That means Pell grants, Section 8 housing, low-income energy assistance, WIC, clean energy research, and "dozens and dozens of other programs." Not to mention the fact that McCain has opposed funding IDEA numerous times.

How did the speech go over with people who know about disability firsthand? Becky Blitch, who I've quoted here before and who lives with spinal muscular atrophy type II, says she was infuriated by Gov. Palin's speech. "By going off on impassioned tangents about earmarks and Obama's tax plan, Gov. Palin gave the impression that this speech was merely cover for stump-speech attacks, belittling the importance of the topic at hand....It's worth noting that absolutely no new territory regarding disability policy was covered in this speech....Let's face it: John McCain and Sarah Palin are losing this election. The governor could have used this moment to 'pull a Bullworth' and make some bold statements about where this country really needs to go in terms of disability policy. She didn't. She stuck to a couple politically safe proposals, she attacked Barack Obama, and she got misty-eyed over the special-ness of special needs kids. That, my friends, is called pandering. Nothing new about it."

In a post titled "The Fantasy of Palin's Plan for Special Needs Children," blogger "Writes Like She Talks" says Palin "either has no idea what she is talking about or is purposely presenting false impressions about what the federal government currently does for special needs kids, who is responsible for taking care of special needs kids, and what impact she, as VP, could possibly have on any of that....Either way, or both ways, nothing that she suggests as a promise for what she would do or be able to accomplish as VP is, in reality, achievable."

Over at Daily Kos, "Critical Dune" writes: "As a special needs parent and advocate, it's killing me to hear this garbage because she is fooling some of the people some of the time with this pander." His post includes a good link to a Wall Street Journal summary of what a special needs trust is.

Do Lies + Fear = Votes? Special Needs Trusts and Taxes

Sen. McCain and Gov. Palin today started a new misleading attack against Sen. Obama -- that his tax plan would somehow harm "special needs trusts," which are long-term savings accounts for people with disabilities. Let's check the facts:

- Obama's plan will not raise taxes on any family earning less than $250,000 per year.

- A special needs trust earns interest, just like a savings account does. So if a person had a special needs trust of $5 million, that account could produce annual income of $250,000 and may in fact lead to higher taxes under Obama's plan. Do you have a family member with special needs who has $5 million in a special needs trust? If not, the Obama tax plan would have no impact on that account.

- What economic impact will the McCain-Palin plan have on children and adults with disabilities? To answer that question, consider the impact of freezing, reducing, or eliminating every federally supported benefit they currently receive -- Social Security, housing, education, and other support. Consider the impact of a health plan that does not require providers to cover pre-existing conditions like autism and Down Syndrome. Some analysts have predicted that as many as 20 million Americans could LOSE their existing health coverage under the McCain-Palin plan.

You will be hearing more McCain-Palin lies over the next 11 days -- their campaign has officially announced a new strategy to try to win votes by scaring parents with special needs kids. Are you more likely to vote for presidential candidates who turn away from visions and plans in order to try to scare you into voting for them? Apparently they think families dealing with special needs are so (a) stupid or (b) vulnerable they can be manipulated into believing outright lies.

11 Days Before Election, Palin Endorses Obama's Call to Fully Fund IDEA

In Pittsburgh this morning, Gov. Palin gave a speech on special needs. A big focus of her speech was fully funding the Individuals with Disabilities Education Act (IDEA). It took a long time, but I'm pleased that 11 days before the election, Palin has endorsed a position that Sen. Obama took more than a year ago, when he issued his policy position on disabilities. His first recommendation is to fund IDEA, a position he has advocated since he was first elected to Congress.

Here's what she didn't say:

In no part of her speech did Palin criticize the Obama-Biden plan for children and adults with special needs, or even draw contrasts between the positions.

She neglected to mention that the McCain-Palin health plan would tax employer-provided health benefits and allow people with special needs to be denied health coverage. Down Syndrome, autism, and other conditions would considered pre-existing conditions that insurers could refuse to provide coverage for.

She didn't explain why -- in all of her speeches and interviews about special needs, even when pressed for details -- she hasn't mentioned IDEA in the two months since she was nominated.

She chose not to mention the government-wide spending freeze she and McCain support, which will make it nearly impossible to fill the huge gap needed to fund IDEA. And she contradicted McCain's comment in the last debate, that no more funds are needed to meet the needs of families raising children with autism and special needs. McCain's solution was not funding, but "transparency, accountability, and reform" of government agencies.

Despite the fact that Palin has had a nephew with autism for 13 years, and claimed today that she and her sister Heather Bruce talk regularly about these issues, this Alaskan parent says, "The only 'special school' that received significant increases to its budget this year is the Alaska Youth Challenge Academy, which is a military youth academy for youth with behavioral challenges. There have been no significant increases to early intervention services (children have to wait for months to get therapy, clearly violating IDEA)."

The campaign has added a policy position to its website. As I promised the day I started this blog, now that they have created a position (11 days before the election), I will add it to my links.

Heather Bruce, Palin's Sis, Speaks

Gov. Palin's big sister, Heather Bruce, spoke with Autism One Radio, about raising her 13-year-old son with autism. What she said doesn't reassure me about her sister's understanding or commitment to autism. Here's what she had to say:

"She [Sarah] wants to help. She wants to help so badly, but she has a lot to learn, and she knows it. She’s fresh into this, being an advocate for autism, for Down syndrome. People expect her to know everything about everything. [She has said] We need to sit down Heather, tell me what your needs are, what do you wish you could see, what do you think would help the state. And that was just the time she was the governor."

So after Sarah has been an aunt to a child with autism for 13 years and governor for nearly two, the best endorsement her sister can give her is "she has a lot to learn, and she knows it"? Interestingly, she also gives credit to the Democratic candidates for also raising the issue of autism during the campaign. How strongly does she support her sister's candidacy? I can't tell after listening to this nearly hour-long interview.

Read other highlights or listen to her interview.

Palin Talks About Autism. That's ALL She Does.

Gov. Palin's absurd, illogical, and contradictory statements about autism reached a new high (or low?) in an interview yesterday with Channel 4 KRNV in Nevada. News 4's web article says what we already knew -- "Palin Advocates for Children with Autism, No Plan Specifics." Watch the video and ask yourself if she has any understanding of the issues important to families dealing with special needs.

In an interview with News 4's Shelby Sheehan, Gov. Palin said she "can't wait" to start helping the 5,000 Nevada families affected by autism. "However, when pressed, she was unable to provide details on a plan to do that," News 4 reports. Palin said it's possible to implement the government-wide spending freeze Sen. McCain has proposed and also uncover buckets of new money for research. But "Palin did not name any specific expenditure she wanted to cut in favor of funding for autism research or services, nor did she name what specific programs she'd like to fund in order to help those families."

And yet -- get this -- she attacked Sens. Obama and Biden, saying that she and McCain "don't just talk the talk, we walk the walk." It gets better. To support this claim, she said, "And that's why in not just that first speech, but in every speech I give, I talk about being an advocate and a friend in the White House for our families who have members who have these special needs." Yes, she's talked. And talked. And talked. But when asked specific questions about this topic, she hasn't strayed from her talking points, and neither she nor McCain have outlined a plan, a vision, or a single policy that would help anybody with a disability.

On the other hand, as News 4 reports, "Obama has released a specific plan to help the families dealing with autism spectrum disorder. He has promised $1 billion annually in support and services by the end of his first term as president. He has also promised to appoint a federal autism spectrum disorder doordinator to oversee all federal efforts and fully fund the Combating Autism Act."

If you care about these issues, is there really any choice? Do you want four years of talking, posturing, and soundbites? Or do you want real plans, real programs, and real funding to provide the health care, education, and other services families need?

Palin Opposes Help for Developmentally Disabled

On Monday in Colorado, Gov. Palin had an opportunity to fulfill her promise to be an advocate for people with disabilities. Instead, she expressed her opposition to a ballot initiative in Colorado to eliminate the waiting list for state services. The initiative is supportive by many Republicans, including the state's First Lady.

Palin spoke out against a Amendment 51, which would raise the sales tax by one cent on every $10 spent for the next two years to help serve 12,000 people on a waiting list to receive state services. These children and adults -- with autism, Down Syndrome, and other developmental delays -- are waiting for services like home nursing care and job training.

Frances Owens, wife of former Republican Gov. Bill Owens, says compassionate conservatives should support helping people with developmental disabilities because it's a moral issue as much as a fiscal issue. Palin disagreed.

McCain Campaign: "We Do Not Have a Policy on Disabilities"

As I said in one of my earliest posts on this blog, it's hard to compare the candidates' policy positions on disabilities when only one candidate -- Sen. Obama -- has one. If you don't believe me, read on.

Kareem Dale, Obama's national disability vote director, recently appeared at a disability forum in Athens, Ohio. The idea was to discuss important issues with a member of Sen. McCain's staff. The only problem is, the McCain campaign sent an email message instead of a person. As hard as it is to believe, Donna M. Jones, the national coordinator of the (impressive-sounding) Americans with Disabilities for McCain Coalition, wrote this:

"The McCain campaign does not have a vetted disability policy to release at this time. I also do not have any further information on when we might be releasing a platform discussing the senator's stance on issues that relate to people with disabilities. I understand that in this contentious political season, the needs of people with disabilities must be addressed as part of the policy conversation. It is my hope that we will be able to release a vetted policy from Senator McCain in the near future. That being said, I will not be able to send a surrogate to discuss a policy Senator McCain has not approved."

In a blog post, Dale writes, "This statement by the McCain campaign reflects one important reason I support Senator Obama. Over a year ago in 2007, Senator Obama released his comprehensive Plan to Empower Americans with Disabilities. And, over a year later, Senator McCain still has not set forth any plan for Americans with disabilities. We are 23 days from electing the next President who will have a significant impact on Americans with disabilities in terms of health care, employment, education, independent living, and many other important supports and services. I want a President who took the time to care enough and recognized the importance of setting forth detailed policies for our community of steps the federal government should take to empower Americans with disabilities. I do not want a President who 23 days before the election still has not released a plan for the disability community."

A Real-Life Look at the Impact of the Obama/McCain Health Plans

From today's Christian Science Monitor, an unbiased look at the health care plans that Sens. Obama and McCain have proposed. It includes this story about a family raiaing a child with special needs -- they would be guaranteed coverage under Obama's plan but would face potential bankruptcy under McCain's, which allows exclusions for people with pre-existing conditions.

"...Demko said she couldn’t keep working full time with an infant with special needs. When she quit, she didn’t realize that would result in her family’s being unable to get health insurance. Ohio does not require insurance companies to cover children with disabilities considered to be preexisting conditions. Both she and her husband have also had minor health issues, but she never imagined they might also be a barrier to finding an affordable healthcare plan."

The Demkos' income is too high for their daughter to qualify for Ohio’s state health insurance plan, but too low to qualify for another state-sponsored program. The article says, "She’s gotten quotes for family health plans that start at $3,000 a month, which is almost as much as they earn."

McCain's $5,000 annual tax credit wouldn't go very far for the Demkos, if they could get coverage at all.

"Sentimentality," "Rhetoric," But Little Else for McCain-Palin on Special Needs

From Newsweek: "Spotlight on Autism: The mother of an autistic son reacts to John McCain's recent pledge to help families like hers. Was it just rhetoric?" This is an interview with Kristina Chew,
an assistant professor of classics at Saint Peter's College in Jersey City, N.J., and the editor of the blog AutismVox. Commenting on McCain's remarks in the last debate, Chew says, "He's sentimentalizing the children, but not looking at how we can help them, how we can teach them, how we can make things better."

As the mother of an 11-year-old with autism, Chew worries about the impact of McCain's proposed spending freeze. "Every family with special-needs children feels like they need more support and services. They need another aide in their child's classroom, they need more therapy for early intervention, they need sick care, after-school care. I know my own son costs our school district a great deal more than a typical child. Any kind of spending freeze is either going to cancel out the creation of new services or make it harder for a school district to keep on providing the things it has been providing."

Two Different Views on Autism

Over at Suite101, Jeffrey Donaldson writes about "The Politics of Autism," comparing the candidates' records in an insightful way.

"To distinguish the two candidates on this issue is difficult. McCain’s language in his position indicates that he perceives autism as an epidemic like polio, a disease to be contained and cured. Obama’s emphasis is more on the life-long nature of the disorder and the lifestyle it implies; he underscores the importance of the educational treatment of autism as much as the medical treatment....

"Obama's perspective is more accommodating of the lifelong nature of the disorder; after a child is born, autism can be treated, but the child still needs an education....Research on autism indicates that children benefit from at least 40 hours a week of intensive early intervention (immediately after diagnosis, if possible) in a 1:1 ratio. The funding for this type of care has been sparse at best...

"While Obama states to fully fund the Individuals with Disabilities Education Act and increase the implementation of the Combating Autism Act, McCain’s promises to advance research do not indicate any intention to increase funding for research or treatment (his website’s autism page is called 'Combating Autism in America,' which may indicate he views the act as a 'Mission Accomplished')."

This clarifies why so many parents raising children with special needs are drawn to Obama's positions. He shows a deeper understanding of the true needs of families -- health care, education, housing, etc. Even if we discovered a way to prevent autism, there are still a lot of families that have real needs now. Obama gets that. McCain and Palin don't seem to.

Palin Seems to Have No Idea What IDEA Is -- And That's a Problem

I recently had an insightful conversation with Jennifer Laviano, an attorney in Connecticut who has devoted her career to representing children with disabilities. A note she wrote to her clients, friends, and colleagues has started making the rounds on the Internet, and I wanted to confirm the letter was really from her -- and to ask if I could post it more widely.

Jennifer initially intended to keep her political views to herself. She didn't want to offend anyone who may support McCain-Palin, but so many of her clients were asking her opinion that she wanted to provide some information. She decided to write the letter when Gov. Palin demonstrated a complete lack of knowledge about the Individuals with Disabilities Education Act (IDEA), the federal statute that governs special education. Here are some of her main points. I encourage you to read the entire letter.

"The IDEA is up for reauthorization by Congress in 2010, and it is crucial that it reflect the policies and funding structure necessary to protect and appropriately educate our children with disabilities. I needed to know what Gov. Palin thinks about the future of special education legislation in this country.

"I know where the other three on the tickets stand; Senators Obama and Biden have issued position statements on the IDEA to various parent groups, strongly supporting full funding for the IDEA and the rights of children with disabilities and their parents....Neither McCain nor Palin have provided those positions on the IDEA to parent advocacy groups....I was extremely disappointed in McCain's discussion on the Senate floor regarding the reauthorization of the IDEA 2004, in which he expressed his concerns that parents of children with disabilities who have to sue to secure appropriate services for their children under the statute and win against districts shouldn’t have their attorneys’ fees covered. This is not just a matter of self-interest for me -- it is the difference between families, especially poor families, being able to vindicate their civil rights or not. But I knew those things -- I did not know where Palin stood, and I wanted to find out.

"Having waited for some specifics from her on just how she is going to be an advocate for children with special needs in the White House, I finally got close. In her recent interview with Greta Van Susteren on Fox News, she was asked what her position is. While never mentioning the IDEA at all or what needs to be changed, kept, or fixed in it, she stated that the issue that needs to be addressed is 'equal access' for children with special needs. EQUAL ACCESS? Seriously? We HAVE equal access, that is what the original version of the statute fought for in the early '70s, when children with disabilities were literally prohibited from attending our public schools....Our problems are not that children with disabilities aren’t allowed into the buildings; our problem is what happens when they get there! ... We are decades from equal access being the key question, and apparently Gov. Palin is not aware of that fact.

"It is not terribly surprising to me that Gov. Palin’s views on this are so far outdated. I have traveled to Alaska to give a speech to parents and professionals on the subject of the rights of children with special needs, in particular children with autism spectrum disorders. I was stunned by how far behind the state was from the vast majority of the rest of the country on the education of children with disabilities....

"This issue should be front and center for any candidate for the White House, and I write to let you know that, at least as far as Gov. Palin is concerned, it has been an opportunity not only missed, but frighteningly misunderstood. It does not bode well for her, for us, or most importantly, for the children we love who need and deserve better in an 'advocate in the White House.'"

The Backlash Continues, Part 2

It's ironic that by trying to connect with people dealing with special needs, McCain pissed off so many of them.

Christy Everett explains why she was offended in her blog post, "I Know Nothing About Special Needs." She explains, "Yes, my son Elias has multiple disabilities that affect his balance, movement, vision, communication, and breathe, and yes I’ve immersed myself in the disability world by reading books, blogs, articles, laws, and enough bureaucratic paperwork to fill a truck, but I am merely a tourist in this world, hoping to learn the culture so I can advocate for my son. I can’t claim to be an expert. I’m not even an insider. I’m just a mom who loves her child. For McCain to say that Sarah Palin 'understands special needs better than almost any American I know' just shows how out of touch he is with the disability community."

Christy is not just another parent living with the challenges of raising a child with special needs. She's a dedicated advocate who happens to live in that state "up north," as Gov. Palin like to say -- Alaska. In an emotional blog post back on Sept. 13, she reflected on her multiple meetings with Palin to advocate for funding to eliminate the long waiting list of nearly 1,000 Alaskans with developmental disabilities who are in need of treatment. She said she cried when she heard Palin announce at the Republican Convention that she would be an advocate for children.

But then she continues: "And now that the crowd has dispersed and the lights have been turned down, I find myself wondering how you could make this pledge when so many Alaskan families wait for the support they need. Especially with a state budget with billions of dollars in surplus. I know disabilities is not a mainstream issue. Not nearly as hot a topic as soaring prices at the pump. And so you pay each Alaskan an energy rebate, a one-time check of a little over a thousand dollars. I hope the big-screen TVs are worth it."

Since the time she wrote this, her opinion of Palin has continued to sink. Not surprisingly, Christy is among a large number of Alaskans, special-needs parents, and advocates who are voting for Sen. Obama.

Let the Backlash Begin...

It turns out people do watch these debates -- and pay attention when a candidate makes misleading comments like McCain's Wednesday night. The blogosphere is buzzing, and I'll give you just a sample of what I'm seeing.

In a letter to the editor in the Chicago Tribune, Janet Takehara, a mother of a 21-year-old with Asperger's Syndrome calls McCain's claim that Palin knows more than "almost any American I know" about special needs "condescending, offensive, and frightening."

Charles Fox, writing in his Special Ed Law Blog, says, "It is wrong at this late date to shill yourself as a champion for the vulnerable populations of children with autism, when he has no record to speak of before now. Senator Obama and for that matter Senator Clinton have taken affirmative positions on funding and supporting efforts for children with autism. Children with special needs, whether those with Downs or autism or cerebral palsy or any other disability, are not emblems to be held up for political gain....If Senator McCain's voting record with President Bush was not enough to disqualify him for the presidency, then his use of children with special needs as a political tool certainly rules him out once and for all."

In the Huffington Post, Janet Grillo, a former board member at Cure Autism Now, writes, "My Autistic Son is Not a Political Pawn." While McCain claims he would support autism research, he wants to freeze all government spending. And his offer of a $5,000 tax deduction for health care won't go far to meet her son's annual $90,000 of services. "Thank God that California state-funded regional center services have absorbed the lion's share of those costs. But, as everyone knows, California is now bankrupt. Those services have been frozen. Children and parents are floundering." Sen. Obama, she says, "was right to tell the American people that this essential work will cost money.... Piece meal tax rebates will not cover health costs for our families, as they contend with this lifelong neurological disability. Tonight, John McCain told us that Governor Palin 'knows more about autism than any other American I know.' Perhaps he should get out more."

At DailyKos, "expatyank" describes his 18-year journey with a son with autism. The title of his piece summarizes his views pretty well -- "McCain's Autism Pander: And Why This Parent/Professional is Disgusted." In addition to sharing his personal story (in great detail), he examines the candidates' policies, contrasting McCain's singular focus on research and children with Obama's comprehensive policies. "Obama doesn't stop there. He calls for "treatment, screenings, public awareness, and support services, opportunities and effective solutions for people with ASD, independent living, life-long services for people with ASD, and full federal funding of IDEA (special education)."

In his blog, health researcher John Feighery, asks "Which Candidate is a Friend to Special Needs Children?" Writing from his personal experience, he says, "We need an advocate who knows about our difficulties and has a plan to make things better. Based on my research, Obama will be the kind of advocate we need. I understand if you are suspicious about pledges from a candidate during an election and wonder how all these plans will be paid for considering the current state of the economy. But if Obama can enact just a few of his proposals, we'll clearly be better off than we are now."

Feel free to send me other opinions you think people should see.