Kansas Advocates Say State to Consider Autism Insurance Bill

Kansas lawmakers are getting ready to consider a bill that would require health insurance plans to cover diagnosis and treatment for autism spectrum disorders, including services like applied behavior analysis to cover citizens of the state until age 21. The proposal also calls for an exclusion for small businesses who would not have to offer such services through their health plans.

The proposal, referred to as "Kate's Law," follows the establishment of the Kansas Autism Task Force, a panel of citizens set up by the state in 2007 to look into the needs of people with autism.

The Kansas Coalition for Autism Legislation has lots of information about the proposal on its website and its special Kate's Law web page.

The bill itself has not been introduced officially in the legislature, but the outlines of it are slated to include the following, according to the Kansas Coalition for Autism Legislation:

• Health insurance policies must provide coverage for the diagnosis and treatment of autism spectrum disorders
• “Treatment” includes any therapy prescribed by the attending physician and includes applied behavior analysis, speech therapy and occupational therapy
• Coverage for applied behavior analysis shall be subject to a maximum benefit of $75,000 per year through age 21
• Small businesses, i.e. employers with 50 or fewer employees, may “opt out” of these provisions
• Health insurance companies cannot deny coverage on an individual solely because the individual is diagnosed with an autism spectrum disorder

The Kansas advocates for this bill, who are gearing up for a public education and awareness campaign, have posted a couple of YouTube videos explaining the medical, social and financial implications for a family that received an autism diagnosis. The first video is below, or if you reading this via e-mail subscription, you can find the 7-minute clip here.

Watching Obama's Stimulus Package and How States Receive Federal Aid

President-elect Barack Obama committed himself to helping state governments deal with economic problems and budget shortfalls in a meeting in Philadelphia on Dec. 2. Assuming the new Obama administration can win support after taking office in January and start implementing its plans, this is good news for many who care about services delivered at the state level.

While this issue clearly goes beyond services for people with autism spectrum disorders, it will be important for advocates to watch how state-level budget discussions progress. Most state governments—41 out of 50 as of this week, The New York Times reported— are forecasting budget deficits this year.

In Massachusetts, Gov. Deval Patrick told WBUR radio in Boston that Obama and governors shared a strong consensus that a new stimulus package will focus on "job creation, to build roads and bridges, restore rail systems, install green technology, refurbish public buildings." Patrick added that governors told Obama states need help with rising demand for services like Medicaid, food stamps and unemployment benefits, which are rising as state revenues fall.

Update: WBUR posted the audio clip of the interview with Deval Patrick at my request. Here it is:


Those points are clear: new federal money for roads, bridges, buildings, new environmentally-friendly fixtures and technologies. Help for people hurt by the recession.

What's not clear so far is how operating budgets are faring at the state level, and at the level of cities and towns, where our kids go to school, for example, or other important services get delivered. Those are the decision-making processes that bear close scrutiny, and likely, some advocacy.

If you have information about goings-on in your state, please feel encouraged to post a comment below this post.

Below is a video of Obama's remarks at the governor's conference on Dec. 2 in Philadelphia, via Yahoo video.

President-elect Obama and governors tackle the economy @ Yahoo! Video

The Grandparent Autism Network of Orange County, California

One thing I have learned from experience and from networking with other parents of kids with autism spectrum disorders is that grandparents have the potential to be difference makers. Grandparents can serve as a sounding board for the myriad decisions we have to make about our children. They can provide both all kinds of support—emotional, respite, you name it (assuming they are in a position to help).

That's why it's so encouraging to report on the growth of the Grandparent Autism Network of Orange County, based in Tustin, California. Bonnie Gillman, founder and president of the Grandparent Autism Network, said she believes the group is the only nonprofit support group set up exclusively for grandparents in the United States. Its members include more than 500 grandparents in 34 cities in Orange County in southern California, and its website, www.ganinfo.org, has people all over the world seeking information from it.

Here is a list of pilot projects, which Gillman notes welcomes the participation of all adults, whether they are grandparents or not, and which her California group hopes can be replicated by others in other locations:

• The Special Needs Acceptance Book Project will increase awareness and peer support for children with special needs to prevent bullying. This book and accompanying Teachers' Guides for K-6 grade classrooms and Christian and Jewish settings will be introduced to elementary schools, youth groups, churches, synagogues and libraries in the 34 cities of Orange County. Interactive educational and character building activities help children to understand more than 20 different developmental disabilities. The project teaches that everyone is special and everyone deserves to be understood and accepted.

• A Job Opportunities Committee will assist job vendors contracted by the Regional Center of Orange County to identify prospective employers for people with special needs. There are several ways volunteers can help to develop a broad range of new work opportunities. The Orange County group plans to share information about this initiative at a statewide meeting in February 2009.

• Two informational videos designed to broaden awareness: "The Impact of Autism on Intergenerational Relationships" and "Autism Research: Fact and Fiction."

We have seen a growth in awareness in the United States in the past few years about the need for autism awareness and support of people with autism spectrum disorders. The establishment of an organization like the Grandparent Autism Network is a reminder to parents who may feel they are stuck in the midst of IEP negotiations, or coping with daily living challenges and trying to help their children, that we are not alone.

More Autism Resources for the Presidential Election for Voters

The Autism Society of America today publicized a presidential election resources page, with statements by Republican John McCain and Democrat Barack Obama. Find the page here, with the candidates' full statements:

Statements on autism by the presidential candidates.

Excerpts below.

From McCain's statement:

As you know, autism is a "spectrum disorder" that affects individuals differently and to varying degrees. Because of this, there is no single approach to resolving the many challenges of individuals with autism and their families. That is why I have supported a range of activities to improve the diagnosis, treatment, education, and lifespan needs of individuals with autism.

The first issue is to ensure that children with autism are diagnosed early -- when the condition is most treatable. All research indicates that children who receive comprehensive therapies can have dramatically improved outcomes. Federal efforts must support research to improve early diagnosis, intervention and treatment. I cosponsored and worked to enact the Combating Autism Act of 2006, which is helping to increase public awareness and screening of autism spectrum disorder, promotes the use of evidence-based interventions and created autism Centers of Excellence for Autism Spectrum Disorder Research and Epidemiology. ...

We must also strengthen our educational system, so that our schools can meet the needs of children with autism. Well-trained special education teachers are essential to the health of the public school system and speak volumes to our ability to ensure basic civil rights. I have often stated that our nation’s children deserve an equal opportunity to succeed. This opportunity should not stop short of children with autism, or any other developmental disability.

From Obama's statement:

As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. I believe that we can do more to help Americans with ASD and their families understand and live with these conditions. That's why I am committed to increasing federal funding for autism research and treatment to $1 billion annually by the end of my first term in office.  I also believe that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

I also support the adoption of a comprehensive plan designed to provide lifelong supports and resources to Americans with ASD and other disabilities. This plan would ensure that their needs are met by:
• Reclaiming America's global leadership on disability issues by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities;
• Providing Americans with disabilities with the educational opportunities they need to succeed.
• Ending discrimination and promoting equal opportunity
• Increasing the employment rate of workers with disabilities, and
• Supporting independent, community-based living for Americans with disabilities.

More importantly, as you have all gathered here today to discuss, access to health care is a pressing need – one that we can no longer afford to ignore. As President, I will make high quality, portable health care plans affordable to all Americans, including the self-employed and small businesses.

Links to the candidates' websites:

Obama's homepage, and the campaign's disabilities page and a statement about autism.

The McCain campaign's website includes lots of information about the candidate's policy issues, including healthcare and education and this statement about autism.

Why This Parent of a Special Needs Child Is Voting for Barack Obama

There have been a number of essays and editorials about the presidential race, considering in depth the positions of Republican John McCain and Democrat Barack Obama, which I would recommend: The New Yorker and The Los Angeles Times are two that endorse Obama which clearly lay out the case—in general, for a change in direction for the United States, and specifically for Obama's leadership.

I cite those examples for two reasons: First, I don't decide whom to support based on one issue, whether it be autism or something else. And second, this blog post is going to hit just a few highlights. Still, when it comes to this blog's readers—mostly parents and family members of people with autism spectrum disorders—there are several reasons to add Autism Bulletin's voice to those supporting Barack Obama for president, and Joseph Biden for vice president:

1.) The Role of Government in Our Lives

No one I have met in this journey as a parent of a special needs child plans to use government services more than anyone else. We became parents, and then we learned that we had a special needs child. It happened, and most of us have learned that no matter how hard we try, we need help. It's not our fault we need help, but we do.

The government can help, in many ways: through the work of educators teaching our children new skills, in early intervention programs, in school settings and at home; through supporting healthcare programs that augment those school- and home-based services; for autistic adults who require support to live in our communities.

We're in tough economic times, certainly, and it is difficult to imagine a great expansion of social services in the coming years. But listening to Obama and McCain during the campaign, the conventions and the debates, it is clear to me that a Democratic administration would be better for our kids and our families.

I say this having heard the pledge by Sarah Palin, the Republican vice presidential nominee, to be an advocate for special needs children in the White House. But I have trouble reconciling that pledge with a historic position by the Republican Party to want to eradicate the Department of Education. I have trouble seeing how a Republican administration would support government research dollars going to help people with autism, when John McCain promises to cut spending across the board. (I also recall stories like that of Mike Bernoski, a parent who was thrown out of Republican Joe Barton's Congressional office when Bernoski sought to discuss the Combating Autism Act.)

And, more importantly, it's clear that Obama has both education and social services at or near the top of his agenda. When he has to make tough choices, he has indicated that he will prioritize education and healthcare goals. He is a better choice.

2.) The Healthcare System in America

Advocates for people with autism spectrum disorders have done heroic work in recent years around the country, state by state, to win more health insurance coverage for our families. There's more work to be done.

John McCain's healthcare proposal seeks to apply free market principles to the nation's healthcare system. It would allow people to shop for health insurance across state lines, which leaves in doubt state governments' requirements to cover citizens according to state laws. At the least, it would appear to undercut the role of states and appears to threaten the gains the advocates for our families have won.

In a market-based model, there are always winners and losers. The question then comes up: what role will the government play when people all over the nation, including people with disabilities, are losing?

During the debates, a moderator asked the candidates whether healthcare in their view was a right or a responsibility. McCain said he sees healthcare as a responsibility. Obama said he sees healthcare as a right for all Americans.

I have read and heard media reports which suggest Obama's healthcare plan projections are rosy, that they won't work exactly as he says by expanding the existing employer-based system, and that the economic meltdown will throw his plans off track. Those points make sense. But I come back to the principle: Obama is right that our government needs to find ways to care for everyone. McCain is wrong to trust the market to solve the problem.

3.) The Role of the Courts

Parents of disabled children have brought cases to the federal courts, seeking for example, the right to advocate for an autistic child when they can't afford a lawyer. We should expect more cases, as questions about what our society should do to treat people with disabilities, to allow them to live, learn and work in our communities and nation as full participants.

The president's right to appoint judges, to the Supreme Court, and to other federal benches, is another reason I am supporting Obama. I trust him to appoint judges who will be open to the fact that in today's America, we face issues, challenges, medical conditions and disabilities that require careful consideration and fair treatment.

4.) Awareness Is Not Enough

I have been astonished by the degree to which politicians have mentioned autism during this campaign. John McCain, Barack Obama, Bill Clinton, Hillary Clinton—each has spoken about it, citing the need to support families dealing with its challenges. It feels like autism advocates have won an important awareness battle.

But awareness is not enough. It's not enough to say you know about the problem. You have to be willing to do something about it. Obama's domestic priorities of education and healthcare come closest to addressing the issues that parents of kids with disabilities face.

No one, especially in these uncertain economic times, can predict what is going to happen. But after listening to these candidates, studying their histories, watching how they conduct their campaigns, noting their choices of vice presidential nominees, advisers and prominent supporters, I have concluded that Barack Obama is the best choice for president: for our country, for our families, for our future.