Thursday, February 26, 2009

Autism Thursday in Annapolis Part 2


Without a doubt, the highlight of today's rally and both hearings was Adam Berman, a 22-year-old who spoke about the progress he's made since being diagnosed with autism 20 years ago.

"My prognosis wasn't very favorable. They said that I'd be institutionalized. I'd be a burden to the taxpayers. I'd be unable to dress myself. I'd bang my head on the wall. Well, I'm here today to tell them that I am a taxpayer." Adam says Applied Behavioral Analysis (ABA) therapy allowed him to graduate from the University of Maryland and get a job.

Watch his dramatic remarks at the rally.

video

See Part 1 of my report, including more photos.

Autism Thursday in Annapolis Part 1

Over the past few months, I've reported about the efforts of several states to pass legislation to mandate insurance coverage for autism therapy. But it was thrilling today to see my own state undertake this important cause.



At noon, we gathered at the area outside the State Capitol called "Lawyers Mall" (how appropriate). There may have been some lawyers there, but most of the crowd of 100 or so were parents and other regular people who are affected by autism in some way. Several elected officials who spoke deserve a lot of credit for their strong leadership -- Attorney General Doug Gansler (who has a nephew with autism), Delegate Kirill Reznik (who sponsored House Bill 273), and Senator Kathy Klausmeier (who sponsored Senate Bill 394).

After the rally, we attended the two hearings, first for the Senate bill and then for the House bill. I testified at the second hearing, the House Health & Government Operations Committee, about my family's experience with autism therapy. In preparing my testimony, I learned that it's hard to say much in three minutes. Something I wanted to say, but didn't have time to, is that my wife and I are fortunate that we've found a way to pay for these services. And we're fortunate that our daughter was able to get into a specialized preschool at age 2. I didn't testify to ask the insurance companies for a handout -- I just want more families to have access to the services that our daughter has benefited from.

It looks like this will be an uphill battle, with opposition led by the insurance companies. But I'm optimistic. Think about it: Who's side would you rather be on -- the insurance industry? Or parents, therapists, doctors, scientists, doctors, and advocates like Autism Speaks and Easter Seals?

Maryland American Academy of Pediatrics: Yes on Insurance Coverage for Autism


On Wednesday, the Maryland chapter of the American Academy of Pediatrics expressed it support for HB 273, the legislation that would mandate insurance coverage for autism diagnosis and treatment -- and the bill that I am testifying about Thursday. Here is the complete statement:

"The Maryland Chapter of the American Academy of Pediatrics (MDAAP) is a statewide association that represents more than 1,100 pediatricians and allied practitioners in the State and is a strong advocate promoting the health and safety of the children they serve. MDAAP supports House Bill 273.

"House Bill 273 requires carriers to provide coverage for the diagnosis and treatment of autism spectrum disorders. Furthermore, the legislation includes provisions which ensure not only are the services covered but that they can be provided in a manner that is not designed to limit access or otherwise undermine the benefit of the coverage. For instance, the legislation specifies that a carrier may not require an updated care plan more frequently than six months and must bear the cost for any update that is required. A more frequent update would require concurrence by the treating provider.

"Autism spectrum disorders are complicated and challenging disorders to manage and treat. The care needs for individuals diagnosed with these disorders are highly individualized and require a variety of interventions. However, the care and treatment required is no less critical to the health and well being of the individual than any other challenging health condition or disorder. MDAAP strongly supports the passage of legislation that ensures that care and coverage for autism spectrum disorders is not arbitrarily excluded from the care now required to be included in insurance coverage. MDAAP urges a favorable report."

Make your voice heard -- visit autismvotes.org/maryland.

Tuesday, February 24, 2009

What Does Hockey Have to Do with Autism?

Please watch and share this video of Andrew Rouff, one of the hockey players I coach on Saturday mornings with the Washington Ice Dogs. All of the kids have autism or other developmental delays, and they inspire me every time I see them. Join the special hockey Facebook group.

Monday, February 23, 2009

Testifying Thursday for Autism Legislation in Maryland

I've been asked to testify to the Maryland General Assembly on Thursday in support of legislation that would require coverage for autism diagnosis and treatment. I'm no expert, but Autism Speaks is interested in my personal story, and if sharing it can help other families living with autism, I'm happy to do it.

This blog isn't about me, and I haven't included many details about my family. But on Friday, I'll post my testimony and let you know how the day went. You can also follow my Twitter updates that day, at www.twitter.com/mmiller20910.

If you live in Maryland, please go to autismvotes.org/maryland to see how you can make a difference. Join us if you can -- here are the details about Autism Thursday. Read the text of HB 273 and SB 394. These bills are sponsored by Delegate Kirill Reznik and Senator Kathy Klausmeier, with the strong support of Attorney General Doug Gensler, and they all deserve a lot of credit for their leadership.

If you live in another state, visit autismvotes.org to find out how you can get involved in your state and in the national movement to pass policies to support people with autism.

Saturday, February 21, 2009

Time to Act Now to Get Insurance for Autism

Disability Scoop has a quick recap of some of the state-level proposals to mandate insurance coverage, unfortunately under the heading "States Consider Autism Insurance, But Economy Deals Blow." Bills in Oklahoma and Virginia were killed, but there's a lot of activity in other states.

Now is the time to get involved in your state. Go to autismvotes.org and sign up for email updates specific to your state.

Calling all Marylanders -- This is the big week for Maryland, so if you live here like me, please go to autismvotes.org/maryland to get information about what you can do. This is winnable, but it's not going to be easy. We need more families telling their stories.

Wednesday, February 18, 2009

Use of "R" Word Draws Apology from Bill O'Reilly


You read that right. Someone on "The O'Reilly Factor" said something offensive (no surprise) and then -- under pressure -- Bill O'Reilly acknowledged the comment was offensive. In a comment about the economic stimulus package, Dick Morris scoffed at President Obama, saying, "What he didn't quite explain to me -- and maybe I'm a little retarded about this -- is how are you going to get banks to give people car loans when the government is elbowing them aside?"

When this show aired, actor John C. McGinley of the TV show Scrubs, who has a son with Down Syndrome, was at the Special Olympics Winter Games, and he and several Special Olympic youth delegates let O'Reilly know how they felt about it. Watch their video.

O'Reilly heard them loud and clear. On his show, he said, "...McGinley...and the Special Olympics people contacted us objecting to the word 'retarded...' We understand that word stigmatizes millions of people... we are sensitive to the point. Shouldn't use that word." Read Tim Shriver's column on the incident.

Employment for People with Disabilities: Tips

Disability Scoop offers a great interview with Doreen Rosimos of IncomeLink, LLC, which helps find employment for people with disabilities. She says, "It’s tough to find a job right now for everybody, but I do believe it’s possible....Right now going to a small employer -- the corner market, the local bakery, the businesses with five to six people -- is the best place to get part-time employment, especially if you can go in and talk to the people there. Maybe they need someone just two hours a day."

She adds, "If you do what you love, you’ll never work a day in your life. When I help people find jobs, I don’t help them find a job. I help them find a place to be, where they can grow as a person and experience some satisfaction in their life, not just put band-aids in a box."

Friday, February 13, 2009

More on Biden at Special Olympics Games


In Boise, Idaho, for the Special Olympics Winter Games, Vice President Joe Biden brought introduced Kareem Dale as the special assistant to the president for disability policy. Dale, as you'll recall, was the point person on disabilities for the Obama-Biden campaign. "He is going to have absolutely direct access to the president," Biden said. "There's a lot of barriers. We've broken down barriers before. We're going to break down more barriers....This is a civil rights movement. This is a movement to make sure that we guarantee that all peoples in the world have the opportunity to succeed to the degree they are capable."

Dale said, "I'm just humbled and honored for the faith the president and vice president have shown in me and I look forward to working with them." View Dale's campaign commentary here. For people who care about the rights of people with disabilities, he's a good person to have on our side.

Vice President Biden Visits Special Olympics

On Thursday, Vice President Joe Biden visited the Special Olympic World Winter Games in Boise, Idaho. He said President Obama is committed to programs designed to improve the lives of Americans with disabilities and special needs, adding that Special Olympics athletes have what his mother called "bravery in their hearts." A recent report showed that Special Olympians are more physically active than the general population in America.

Progress in Utah -- Keep Up With Your State

On Thursday the Utah Senate passed Clay's Law, which would mandate insurance coverage for autism. Read more an find out what's going on in other states.

Tuesday, February 10, 2009

Special Education Advocates Have Questions for Duncan

According to Christina Samuels of Education Week, "Advocates for students with disabilities have a full agenda for U.S. Secretary of Education Arne Duncan, including rolling out long-awaited regulations for educating young children and cracking down on the use of restraints and seclusion as school disciplinary measures." Samuels points out that as head of Chicago schools, Duncan was not known for his interest in disability issues.

One advocate said, "He’s not been a great supporter of special ed. I don’t think he dislikes special-needs kids; it just wasn’t on his radar screen during the time he was here."

I recommend this article -- it outlines many of the issues Duncan will have to address.

Monday, February 9, 2009

Another Vote in Oklahoma

As you may have read in the post below, Oklahoma legislators have rejected a bill to require insurance companies to cover autism services. The Tulsa World has an online poll you should take.

When I just took it, 267 people had said yes, insurance companies should be required to cover autism services. Just 13 had said no. While newspaper polls are far from scientific, it's interesting that 95 percent of Oklahomans took a position that their elected officials oppose.

Sunday, February 8, 2009

Support Insurance for Autism? Lessons from Oklahoma


I am disgusted by what's been going on in the Oklahoma "debate" over insurance coverage for autism services. The proposal was defeated last week, and it's a classic example of partisan politics and special interests overpowering the real needs of real constituents. If you think your state and other states should support insurance coverage for autism, pay attention to what's happened in Oklahoma, get mad about it, and fight even harder in your own state to avoid this kind of result. Sign up for email updates at autismvotes.org to get information about what's happening in your state, and what you can do to help.

As background, and this is not a criticism, Oklahoma is as Republican as a state can be. In the November presidential election, 65 percent of Oklahomans voted for McCain-Palin -- the largest Republican margin in the country. Looking closer at those results, you won't find a spec of blue in the state -- not a single county went Democratic. With that huge victory, Republicans assumed even greater control of the legislature and immediately made procedural changes that ensured they would not have any debate about any issue they didn't want to discuss. They also declared that if an issue (like autism insurance) was defeated, no one could propose it again for two years. Can you imagine the backlash there would be if either party tried to run the U.S. Congress this way? Do the terms "democracy" and "representation" mean nothing in today's Oklahoma?

Something else you should know about Oklahoma: Its daily newspaper has been named one of the worst (and most partisan) papers in the country. Take a look at what they paper's official editorial had to say today:
"Group health care premiums in Oklahoma would likely get a lot bigger if the state adds an autism treatment mandate. Lawmakers last week rejected the mandate, but the fight isn’t over. Mandate supporter Rep. Mike Brown, D-Tahlequah, taunted opponents by saying, 'Who’s running this, the insurance companies or you legislators?' He should worry instead about running off insurance companies and running up the uninsured numbers."

Rep. Brown's question -- far from "taunting" -- is what every Oklahoma family affected by this issue should be asking. And it's preposterous to say that Rep. Brown, the families who testified, and others who care about this issue shouldn't worry about this topic. Because what they're worried about is children with autism and the parents who care for them. (Read the posted comments after the editorial to see the emotional reaction of many families.)

The Oklahoma proposal, "Nick's Law," was named for the son of Wayne Rohde, who has put up an admirable fight under extremely difficult services. Some opponents of the legislation have openly suggested that people who don't like the law should move to another state. But I hope Wayne and other family advocates will keep fighting -- and make things very uncomfortable for elected officials who put special interests ahead of the needs of some of their most vulnerable constituents. Read more about Nick's Law and what may come next at http://nickslawok.blogspot.com.

Saturday, February 7, 2009

Department of Labor: Unemployment High for People with Disabilities

The U.S. Department of Labor will begin releasing employment data for people with disabilities. Yesterday it released its first-ever report, showing that unemployment among people with disabilities is more common than the general public and is rising. In January the unemployment rate for people with disabilities was 13.2 percent, compared with 12.3 percent in December. Among people withoug disabiliites, the rate rose during that time from 6.9 percent to 8.3 percent.

Thursday, February 5, 2009

President Taps Duckworth for VA Post


President Obama has selected Tammy Duckworth, currently the head of Illinois' Department of Veterans Affairs, to be the assistant secretary of public and intergovernmental affairs for the U.S. Department of Veterans Affairs.

Some had hoped the top VA post would go to Duckworth, a veteran who lost both legs when a grenade attack brought down her helicopter in Iraq in 2004. But this is a very influential post, as Duckworth will direct internal and external communications and government relations. She noted the particular needs of today's veterans, saying "The VA system faces new challenges as a result of the wars in Iraq and Afghanistan. The patient profile is changing. More wounded soldiers are surviving very serious injuries."

President Signs Bill to Expand Coverage for Kids

President Obama today signed legislation that will allow about 7 million children to continue coverage through the State Children's Health Insurance Program (SCHIP) and allow another 4 million to sign up. The president called the expansion a first step to providing coverage for all Americans. "The way I see it, providing coverage to 11 million children through SCHIP is a down payment on my commitment to cover every single American," he said at a White House bill-signing ceremony.

The Nevada family in this article, who have a child with Down Syndrome who has needed four operations, calls SCHIP their lifeline. The program is intended to help families like theirs, who make too much money to qualify for Medicaid.

Disability Scoop

Special Ed News (Education Week)

Special Education Law