Tuesday, September 9, 2008

An Attempt to Explain the U.S. 'System'

Occasionally I get an email or a comment that inspires a post. This one was inspired by a question I received from a blogger in the UK about our system and what kinds of government assistance families with children who have special needs get in the United States. I wrote back that this issue is messy and complicated, but that I would try my best to give an answer that was accurate, clear, and concise.

As for accuracy, Michigan and the Midwestern U.S. in general is my area of expertise so if I misstated something in regards to a different U.S. region, please let me know. I also may need correction about our welfare system since it's been awhile since I've read about it. Bring the dissenting opinions and corrections on! I'm hoping to learn something new!!

The benefits and amount of services in the U.S. for families who have children with autism depend on four factors. They are:

1. How old an individual is: (The U.S. is so behind in providing adequate services and accommodations for adults with autism that it is alarming). Some individuals may qualify for disability payments on the national level and some assistance at the local level. Notice that I said "may."

An adult with autism living at home would probably qualify for disability as well as those who have independent living arrangements. In terms of children, my ten year old son gets speech therapy, physical therapy, and occupational therapy through his public school at no extra cost. Most public schools are funded by state and local taxes. The services we get are somewhat limited in terms of the amount of time he spends with his therapists per week. Qualified students get special services in U.S. public schools until the age of 26.

2. Income level of families: Families who have low income levels and children under a certain age get a great deal more assistance from local governments than those who have good, but not really high incomes and/or adult children. Middle-class folks are kind of left out in getting services that exist outside of the school system (Applied Behavioral Analysis for example).

The only way to pay for expensive therapies for many middle class people is to rely on health insurance usually available through a good job. Unfortunately, health insurance companies do not seem to be keen on covering the cost of therapies for people with autism. Further, it is getting harder to get a job that has good health insurance as a benefit. Manufacturers are fleeing the U.S. for places like Mexico in order to avoid paying for expensive benefits like insurance.

Agencies, businesses, camps or special private schools in the big cities are most likely to provide scholarships for only low income families or those under a certain pay scale. The cost for such services is very high for everyone else.

Also, the issue of health insurance mostly applies to state governments. For example, families in Pennsylvania recently celebrated because state lawmakers passed a law mandating health insurance companies to pay for the services/therapies for up to $36,000 per year for people who have ASD. See related article here.

Louisiana is another state with a similar law. According to another article, by January 1, 2009 health insurance companies in Louisiana will be required by law for therapies for individuals with autism who are under 17. We don't have a law like that yet in Michigan, but such legislation has been introduced to the House of Representative. See related post at the blog Autism Bulletin here. So, far there doesn't seem to be an age limit attached to the Michigan Bill.

3. Where one lives makes a difference on the ability to find certain services. There seems to be more services, special schools, etc in the Eastern and Western U.S. than in the south and in the middle U.S. The best place to live in Michigan for availability of services is in big cities like Detroit and Grand Rapids. Even in in a small city, we in Mt. Pleasant cannot easily find a professional who provides ABA. Also, where I live in the Midwestern U.S., it's virtually unheard of to send one's child to a boarding school--typical or special needs. It's more common in an Eastern state like Massachusetts to opt for either a "typical" or "special needs" boarding school.

4. Ability to obtain diagnosis of autism. Those families with children who have obvious symptoms of autism and difficulty functioning have an easier time getting services through the schools than those who do not. My family is lucky that we didn't have to fight to get services provided by the school system. Most families really have to fight because, as in the United Kingdom, it's an issue of "availability of funds". Special education teachers and therapists cost school systems far more than general education teachers. Schools do not like to give labels of AI.(Autism Impairment). Unfortunately the label is required to get school services.

In a nut shell: If one has a medium-sized income and/or a child with Asperger's Syndromeor barely noticeable autism, then it's nearly impossible to obtain services in many places in the U.S without going deeply into dept. The best services available for the group "in the middle" seems to be provided by foundations/organizations created by parents of special needs children. These parents provide free or low cost services by raising money and grant writing. The founder of my son's free day (summer) camp, Max's Place, is a single mom! She charges a nominal fee of $50 and arranges for benefactors for those who would have difficulty paying that fee.

Autism in the U.S. is considered a health issue (rather than a social issue as it is considered in the U.K.), which is not a good thing because our very expensive health care system has been disastrous in terms of affordability for decades.

As far as government assistance for cost of living expenses, low income families here may be eligible for a general welfare package called workfare. Benefits might include food stamps, a check for bills, etc. and medicaid or medicare (government health insurance).

There is also a government program called WIC that provides diapers and food supplies to woman who have children five or under. Schools here in the United States have a free or reduced lunch (and sometimes breakfast!) system for those children whose families cannot pay full price.

Those carers or caregivers (as we call them in the U.S.) who have children with special needs may also qualify to get a Social Security Income (SSI) check and qualify to get money for respite care hours. In my area, SSI and respite care hours are taken care of by Community Mental Health. As in the UK, case workers are assigned to the families. Autism Advocates have recently been having rallies/marches at our Nation's Capitol, Washington, D.C. and at various state Capitols.

A hat tip goes to Casdok at Mother of Shrek, for inspiring this post. FYI for Casdok fans: here is a friendly reminder to wish her a happy belated birthday (Sept. 7) if you haven't done so already.


Casdok said...

Thank you for the birthday wishes. And a big thank you for explaining all this. It is interesting to hear what different countries do. (I think i understand it!)

J said...

You are most welcome. : )

mommy~dearest said...

Fellow Michigander here~

You pretty much got it, but I'd have to add how difficult it is to qualify as "low income". Being a single mom of 2 kids with an income of $30K does not even qualify me. To get services, you pretty much have to be destitute.

Also, the services you get in schools depends on that school. My son receives speech (for 20 minutes 2x's a week), but was denied for OT (because OT's in school don't treat sensory issues, they only consult) and was denied PT (because he does not have gross motor defecits). ABA or anything else- out of the question.

I have not been able to find even private groups to help me, since my income falls right in the "you don't have the money, yet you're not living on the streets" category.

Hmmm... may be an argument to quit my job??? ;)