Saturday, January 31, 2009

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

Friday, January 30, 2009

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?

Saturday, January 24, 2009

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!

Friday, January 23, 2009

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.

Wednesday, January 21, 2009

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 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.

Tuesday, January 20, 2009

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 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.

Monday, January 19, 2009

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.)

Friday, January 16, 2009

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.

Thursday, January 15, 2009

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?

Tuesday, January 13, 2009

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 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?

Tuesday, January 6, 2009

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.

Sunday, January 4, 2009

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.

Disability Scoop

Special Ed News (Education Week)

Special Education Law