It's hard to raise a voice above the front-page issues this week: Gonzales hearings, Virginia Tech, death spiral in Iraq, the list goes on.
But here's the one that's on my heart and mind this week, complete with legislative action alerts. The issue is autism treatment funding, and my own personal stake is my beautiful almost-three-year old daughter.
Our national stake? One in every 150 children.
Options & action steps, past the jump...
The Centers for Disease Control released a report two months ago (February 8, 2007) carrying a new number for autism spectrum disorders that screamed across headlines nationwide:
1 in 150 children.
That’s the most rigorous number we currently have going, to describe how many kids in the US are showing signs of an autism spectrum disorder by the age of 8. Many children, like my own sweet girl, are now diagnosed before the age of three.
My husband and I have been scrambling through a landslide of advice and controversy and conversation and reading material, all in the name of sorting out what we can do to give our daughter what she needs. Everybody's got an anecdote one way or another about diets, or chelation, or B12 shots, or various nutraceutical remedies. Many approaches that are obviously helping some people don't (yet, or maybe never will) have the research evidence to back the claims.
However, there's a considerable body of evidence showing that one-on-one therapy, 25 to 40 hours PER WEEK, offers remarkably good results for children with autism. The therapy method with the longest history and deepest research record is Applied Behavioral Analysis, or ABA; there are newer relationship-based therapy methods that are gaining traction as well. The therapies share an emphasis on starting early, with one-on-one interventions and hours upon hours of therapy-time.
This, my friends, is expensive stuff. Multiply it out across those 1 in 150 precious children, and the question is enormous: where will the resources come from, to care for and educate our children with autism? Who should foot the bill?
The families / out-of-pocket?
Plenty of people are left to do just that. Alas, this option is only really effective for the trust-fund babies. People of more middle-class means can’t do it alone without first draining their retirements, then bankrupting themselves. People who are already struggling to make ends meet can’t even dream of it.
Insurance?
nyceve's searing diaries on insurance issues give a good context on why this is a heavily freighted option to even bring up, but here goes. Autism is a clinical diagnosis based on professional observation regarding criteria listed in the Diagnostic & Statistical Manual of Mental Disorders (DSM IV), putting it in the psychiatry camp of medical issues. (There's no blood test or genetic test for autism.) Here's a reference for the criteria translated into layperson's terms...
So with autism in the mental-health realm, perhaps you can guess how eager insurance companies are to provide any coverage at all, given their abysmal track record on mental health issues as a whole. There are some states that do have mandates for at least some level of autism coverage. In my state, Wisconsin, there's an insurance mandate provision in the governor's draft budget right now. The insurance lobby is fighting it hard; but it's part of an important effort to save the state/federal services that Wisconsin has been able to offer in the recent years...
The Feds / the States?
So here's how the state funding experiment has been going in Wisconsin. Young children with autism-spectrum diagnoses, who meet a certain level of disability and day-to-day challenge, can receive a Medicaid waiver and use public funding to receive 3 years of the intensive services described above, with a lower but still substantial intervention for several years after that. Pretty much any family except the trust-fund kiddos can qualify.
However – right now it takes 3 to 6 months to get through the initial paperwork, then another full year on a waiting list to get to the point that your child actually gets the services. By the time you get the early intervention in place, it’s not so early any more.
Add to that the fact that Medicaid is a system strained to the breaking point, and you can see why the state is trying to get insurance to help out. The Wisconsin budget proposal includes the same level of funding for the autism waiver program as it did in the last biennium, which will actually fund fewer new children and make the waiting list balloon unless insurance takes off some of the pressure.
And into this mix we then throw...
The Public Schools?
Autism is a condition covered under the Inidividuals with Disabilities Education Act (IDEA 2004). That means that schoolchildren with autism are entitled to the services necessary to provide an appropriate education, without extra cost to the parents. Services commonly covered include speech, physical and occupational therapy, and a whole variety of assistance tied to the particular individual's challenges. There have been instances of schools covering full-fledged intensive therapy, and I believe there are court challenges wending their way through the system right now trying to force schools to provide that level of service. Unfortunately the schools are reeling under the expense of special education services, and the expenses for intensive autism services are massive. In our school district, special education as a whole is targeted for funding cuts.
What's the Ideal?
So what's the best approach? How can our country step up and help our children with autism live up to their full potential?
I am (perhaps obviously!) not a policy wonk by inclination. That's why I'm posing this as question rather than simply trumpeting my opinions on a solution.
I do have some thoughts, though, and I think the worthy dream is:
- a single-payer health system that provides full autism treatment coverage, in the context of fixing mental health coverage in general
- keeping the schools accountable for education-related assistance but alleviating the special-education burden by getting the health-care system to step up to the plate.
Further thoughts on the ideal (and how to get there) most welcomed!
In the Meantime, What Can We Do NOW?
I'm writing this diary now because things are happening now, initiatives that represent our current best bet for getting & keeping the funding flowing where it needs to be.
On the national level, we have the Expanding the Promise for Individuals with Autism Act (EPIAA). From the Autism Speaks website:
On March 20, Senator Hillary Rodham Clinton (D-NY) and Senator Wayne Allard (R-CO) announced the introduction of the "Expanding the Promise for Individuals with Autism Act of 2007" (EPIAA) (S. 937). On April 17, a companion bill (H.R. 1881) was introduced in the House by Representatives Mike Doyle (D-PA), Chris Smith (R-NJ), Eliot Engel (D-NY) and Charles "Chip" Pickering (R-MS). This landmark legislation would dramatically expand federal funding for life-long services for people with autism.
Please contact your Representatives to co-sponsor this bill! From the link you can send an online message to your Congresspeople to ask for their support.
On the Wisconsin level, the draft state budget with its important autism-funding provisions is wending its way through Joint Finance Committee meetings. If you would like to learn more, along with information on contacting Wisconsin state legislators, visit the Autism Society of Wisconsin page and check out the Cover Letter and Talking Points links.
This Tuesday April 24, at 1:00 pm, I will be joining other autism funding advocates at a Capitol Step for Autism rally in downtown Madison, Wisconsin, where we'll being our concerns to state legislators directly. If you're at all within shouting distance on that day, I'd love to meet you there...