March of Dimes: Presidential History

You know about the March of Dimes, the nonprofit that works to improve the health of babies by preventing birth defects, premature birth, and infant mortality. But did you know it was started by President Franklin Delano Roosevelt, whose birthday was last week? He was born Jan. 30, 1882, and in 1938 he started the National Foundation for Infantile Paralysis. A radio broadcaster urged citizens to show their support by sending their change in "a march of dimes to reach all the way to the White House." That led the foundation to change its name to the March of Dimes -- and FDR's face showed up on the dime in 1945. Read more at USA Today.

Insurance for Autism: More State Updates

In Oklahoma, still debating "Nick's Law," a study shows that requiring insurance for autism would have little effect on insurance costs. Proposed legislation in Connecticut would require insurers to pay for physician-prescribed diagnostic assessments that can cost families $1,500 to $5,000 in out-of-pocket expenses.

Read about these and other states' actions in Montana, Utah, Maryland, Massachusetts, Mississippi, and more at autismvotes.org.

A Super Bowl, a Towel, and What They Mean for People with Disabilities

This Sunday, whether you're cheering for the Pittsburgh Steelers or the Arizona Cardinals -- or, like me, don't really care -- you should feel good when you see hundreds of thousands of "terrible towels" being waved in support of the Steelers. The tradition of the towels was started in 1975 by longtime Steelers broadcaster Myron Cope, who died last year at age 79. Cope trademarked the towels, sold every year as "Myron Cope's the Official Terrible Towel" for $7 each.

The reason you might care about this story is because in 1996 Cope turned the trademark over to the Allegheny Valley School, a Pennsylvania network of campuses and group homes for 900 people with severe intellectual and developmental disabilities. Cope's 41-year-old son, Danny, has been a resident in one of the homes since he was a teenager in 1982. “He’s never spoken,” his sister Elizabeth said. “Which is kind of funny, because Dad is known for his voice. It’s almost like the Terrible Towel is Danny’s silent voice.”

The school has received more than $2.5 million from sales of the towels since 1996, and a Super Bowl win by the Steelers could increase sales considerably. Read the New York Times article.

Va., Md. Moving Toward Autism Insurance Coverage?

Friends of ours were featured on the local ABC affiliate -- talking about the costs of autism therapy and the proposed legislation in Virginia and Maryland that would require insurance companies to cover these services. Watch the story here.

Stimulus May Benefit Students with Special Needs

I have mixed feelings about the ginormous stimulus package -- similar to the way I wonder if sending $500 to every family spurs the type of spending they're intended to. On the other hand, maybe an economic crisis is what it takes to get desperately needed investment in some areas that should be priorities. Education Secretary Arne Duncan says we can't recover and succeed without investing several billion dollars in education, and about a sixth of the $819 billion stimulus package approved by the House would go toward education programs.

As a side benefit that readers of this blog will appreciate: The measure would also inject another $26 billion into No Child Left Behind and the Individuals with Disabilities Education Act. Critics of NCLB have said it could work if it were actually funded, and of course the IDEA has been woefully underfunded.

Duncan said the money for these program would "right a huge, historic wrong," because Congress hasn't spent what it promised. "There is going to be this huge outpouring of joy because this has been a desperately unfunded mandate for far too long."

What do you think? Are you feeling an "outpouring of joy"? Skepticism? Moderate, cautious, tempered optimism?

Vote for Special Needs 08!

If you enjoy this blog, please nominate it as one of the best autism-related blogs at Autism Learning Felt. Thanks!

Partisanship Threatens Autism Insurance in Oklahoma

Another political battle is brewing in the Oklahoma legislature, with Democrats continuing to push for increased insurance coverage, while Republicans fight back with proposals that would simply provide more training for specialists and therapists. Democratic Rep. Wallace Collins: "I’m heartened to hear that House Republicans are interested in increasing training for autism specialists, but what I want to know is, what are they going to do for families who need help now? Do they expect parents of children with autism in our state to sit back and wait for ‘market forces’ to help their children?" Read more.

In Utah, legislation was proposed yesterday to require insurance companies to cover up to $50,000 a year in autism therapy for children up to age 9, and $25,000 for treatment for children between 9 and 17. The chief sponsor is the Republican House speaker. Read more.

Sarah Palin: Remember Her?

In the midst of the historic inauguration of President Obama, there's been little news from the Great White North about Gov. Sarah Palin. But yesterday she gave her state of the state address (full text here) and made several notable comments about special needs issues. I said after the election that I was curious to see what action she'd take on these issues, so it's only fair to report occasionally on what she's up to.

First, she was gracious in her comments about our new president:
"Just two days ago we witnessed a shining moment in the history of our country. Millions of Americans are praying for the success of our new president, and I am one of them. His work is cut out for him, but if President Obama governs with the skill, grace, and greatness of which he is capable, Alaska’s going to be just fine. We congratulate President Obama."

Addressing education, she said:
"...we’ll encourage opportunities for students with special needs. One of the great privileges given to me last year was the chance to be a witness for the truth that every child has value; to say to special needs children that they are beautiful and loved. And needed. We learn more from them than they from us. Across America, a great change is coming in public policy affecting these children, and Alaska can lead the way."

On health care:
"I look forward to working with you on adjustments to kid’s health insurance. We’ll fund more early screening -– for example, for autism -– because early detection makes all the difference."

With a revenue shortfall that could top $1 billion, she announced a hiring freeze, a 7 percent cut in the overall budget, and a spending freeze on all non-essential items. With these challenges, I hope she can deliver on her promises to Alaska's children and families.

Connect with the Obama Administration: Here's How

Thanks to PolicyPitch Blog, here are the Top 10 online tools to connect with the Obama Administration.

The redesigned whitehouse.gov is already getting rave reviews from techie types, who are thrilled to see a blog on the White House site for the first time. This site will only get better with time. I'm also excited to see disabilities not just on a campaign agenda, but on the actual White House site.

What are you waiting for? Start connecting!

Inauguration: The People's Ball

Following up on my previous item about the People's Ball for 450 people who have disabilities or hardships, here's an article about how the day and night went.

Inauguration: My Favorite Moment

One moment made my trip to the Mall worth the effort, and it's at :45 in the video below. After President Obama took the oath of office, the response was overwhelming. It seemed to represent a collective sense of relief, hope, and optimism.


Let's hope good things are coming for our country, as we remember that what happens depends on what we -- not just our elected officials -- do.

Inauguration: City Seemed Unprepared for Elderly, Disabled, and Everyone Else

The Capitol at 6:00 a.m.


In a good spot at 8:00 a.m.


My trip to the Mall today was challenging but worth it -- and I felt sorry for all the people who had tickets but couldn't get in. Considering the city had two months to plan, the lack of organization was appalling. I suspect they knew it would be chaos, and that's why they discouraged children and people with disabilities from attending. It's a strange mixed message to declare you're going to have the most open inauguration ever, while at the same time encouraging some people to stay away.

People with strollers, crutches, or wheelchairs had it the worst. Metro stations were closed unexpectedly, the police at various locations gave contradictory information. In most cases, when I got stuck in a mob with no way out, there weren't any police officers or volunteers to tell us which way we could go. Fortunately, all the people I encountered were respectful -- if they had become angry, it would have been ugly. Worse, if there had been any level of disaster, there's no doubt people would have died.

On one hand, there's never been an event like this in Washington, or in many cities anywhere. Security for the president has to be the number one priority. On the other hand, there was time to prepare, and it almost seemed like they were surprised that 1) lots of people showed up and 2) many of them (like me) arrived early.

I was on Twitter much of the day. You can read my posts at http://twitter.com/mmiller20910. But a few highlights are these quotes:
- A Chicago police officer who was unable to give me directions: "They brought us in from all over, but unfortunately they didn't give us a tour of the city."
- A Supreme Court security officer, to a woman who complained she couldn't go the direction she wanted to: "Hey, you chose to be here today. If it was my choice, i wouldn't be here."

A New Beginning -- for All of Us

The UK Telegraph made this tag cloud illustrating the themes of President Obama's speech today. Article here, and full text of the speech here.

A Ball for All

After reporting on the challenges that people with disabilities will face to attend the "open" Inauguration activities, I wanted to share this news about a different kind of Inaugural event -- the People's Inaugural Ball. Businessman Earl W. Stafford rented space at the JW Marriott two blocks from the White House and invited people whose health or income would have prevented them from attending this historic Inauguration. Attendees include victims of natural disasters, foster children, people with disabilities, and people with terminal illnesses. The ball and other activites are completely funded by Stafford, with a price tag of $1.6 million.

Report: An Inaugural Ball for Children

Peter and Me


Banners Outside the Historical Society of DC




Charles MacCormack, head of Save the Children, wrote an op-ed in yesterday's Washington Times titled "Helping Children in Need," offering five practical steps President Obama should take to improve the lives of children worldwide. I hope MacCormack was aware of yesterday's Children's Inaugural Ball, organized by Every Child Matters. I was among 2,000 attendees at the Historical Society of Washington, D.C., who included "regular" families and VIPs like George Stephanopoulos, who brought his wife and children, and Michael Phelps' VIP mother, Debbie.

In addition to all the food (hot dogs, popcorn, cotton candy) and fun (music, magician, puppets), there was also a powerful message that many presidents have made significant improvements in children's health and education, and the inauguration of President Obama represents a chance to truly put children first. Specifically, the group is concerned about the nearly 9 million children without health insurance, the 3 million children reported abused and neglected each year, nearly 2 million children with a parent in prison, 13 million children in poverty, and as many as 14 million without adequate supervision after school while parents work. Every Child Matters created a nine-page booklet you should take a look at -- called "Presidents Helping Children" (pdf).

A highlight for me was meeting Peter Yarrow of Peter, Paul, and Mary -- who performed "Puff the Magic Dragon" and a song the group played at the 1963 March on Washington, "If I Had a Hammer." (Both songs are below.)

NY Considers Diploma for Special Ed Students

New York State may adopt an "IEP Diploma" for special ed students who complete their individualized education plans. While some parents think it's a good idea, others would rather see the school system encourage students to stay in school for a few more years to attain a "real" diploma. Here's the story from WNYC Radio.

SC Slashes Autism Funding

Two years ago, South Carolina allocated $10.5 million for an autism program. But in June the program will go broke even though less than $700,000 has been spent. By not spending money earmarked for that purpose, the state will miss out on as much as $23 million in matching federal funds. Read more.

Attending the Inauguration: More Challenging for Some

President-elect Obama's team got high marks from disability groups for their policies and for making their campaign and transition materials accessible with technology, captioning, and other accommodations. But many are concerned about the challenges disabled people will face when trying to attend the largest Inauguration of all time. From the Los Angeles Times, read "People with Disabilities Expect Big Challenges at Inauguration, Despite Accommodations."

Being in Washington and hearing every day about the anticipated crowds, bridge closings, and other challenges, I'm not inclined to complain about the lack of accommodation. One recent article said to treat this the same way you would for a major blizzard. Go out if you must, but the crowds and weather will make it particularly challenging -- and possibly dangerous -- for children, older people, and people with disabilities.

They expect Sunday's big concert at the Lincoln Memorial (with Bruce Springsteen, Bono, Stevie Wonder, and others) to draw at least 500,000 people -- similar to a Fourth of July gathering, something I've chosen to avoid for several years. Tuesday's Inauguration is expected to attract at least four times that number. Just like I would be reluctant to take my 5-year-old daughter to a mobbed, sweltering July 4th celebration on the Mall, there's no way I'd subject her to the crowds and freezing temperatures on Tuesday.

On Sunday, though, we're going to the Children's Inaugural Ball, sponsored by Every Child Matters. Public transportation will be busy, but (we hope) manageable.

What are your plans?

Inauguration Here I Come

The Presidential Inaugural Committee just informed me that I've been approved for a media credential for the swearing-in ceremony on Jan. 20! I will be reporting live from the Mall that morning on Twitter. If you're not on Twitter, it's a great place to keep up with special needs issues (and anything else you can think of), and this is a great time to try it out. If you already have a Twitter account, follow me at "mmiller20910" and sign in that day.

If you're not on Twitter, sign up for a free account at http://www.twitter.com and follow me.

To get updates on children's health issues -- including parenting tips and patient success stories -- follow my professional account at "childrenshealth"

Who is WH Senior Advisor's Hero? (Hint: It's Not Obama)

In this article about White House senior advisor David Axelrod, he speaks about his 27-year-old daughter Lauren, who lives in a Chicago facility for children and adults with developmental disabilities. After he gave a speech at the facility recently, Lauren presented him with a painting of the White House that incorporates the Chicago skyline.

"Lauren is my hero," he said at the event. "Because of her epilepsy, she has had many challenges in life, physical and emotional challenges, that most of us have never imagined. Mom and I are so lucky to have you. And I just want to say I love you and we'll see each other often, so don't worry about this moving thing. I'm coming home for every home visit."

Businesses Offer Support to Special-Needs Parents

From Business Week, an article on the growing trend of companies offering services to parents raising children with special needs. Read about the types of support at companies like Ernst & Young, Northrop Grumman, JP Morgan, KPMG, and Pepsico.

How supportive is your employer?

IEP Boot Camp -- The Rights of Students with Special Needs

Here's a great resource from Disability Scoop -- the IEP Boot Camp. If you have a child with special needs, you already know what an IEP is, and much of this won't be new to you. But if you don't know about IEPs (it stands for "individualized education plans"), read this to better understand the challenges parents face in getting appropriate services for their school-age children.

Disability Scoop interviewed special education attorney Marcy Tiffany of the law firm Wyner & Tiffany in Torrance, Calif. She has a lot of great advice.

Tough Times for Oklahoma Program

I'm back from a week of vacation in Oklahoma, and I couldn't get away from news about the economic downturn is affecting children with special needs. On Jan. 2, the top headline was "Economy Hurts Autism Care in Oklahoma." For 2- to 5-year-olds enrolled in the Easter Seals Autism Therapeutic School in Oklahoma City, a funding shortfall will mean a 50 percent reduction in services.

After winning a lottery for one of 15 spots, these families will now get only 20 hours of therapy for their children -- down from 40 -- and there are no guarantees the program will continue past May.

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.