Sunday, November 30, 2008

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.

Friday, November 28, 2008

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.

Wednesday, November 26, 2008

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 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!

Saturday, November 22, 2008

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 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.

Thursday, November 20, 2008

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 ASAP."

So read "How to Get Hired in Washington," from U.S. News & World Report, get on over to, 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.

Thursday, November 13, 2008

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 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.

Wednesday, November 12, 2008

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.

Tuesday, November 11, 2008

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.

Monday, November 10, 2008

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.

Thursday, November 6, 2008


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 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, 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."

Tuesday, November 4, 2008

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 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.

Monday, November 3, 2008

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.

Saturday, November 1, 2008

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 Scoop

Special Ed News (Education Week)

Special Education Law