Brother Abu Sinan, who some of you may remember as a regular on Umar Lee’s blog, has appealed for help as he needs treatment for his autistic son, Sinan, which is starting to get expensive as medical insurance does not cover the only effective treatment:
We took our little Sinan to the Children’s National Medical Center here in Washington DC. This first experience taught us a lot of what to expect in the future. Due to the shortage of professionals to treat children with Autism it took us six months to get an appointment. Once we did get the appointment for an initial evaluation, it was done over two separate sessions at the Children’s National Medical Center. Limits in the number of people able to give care are a huge issue, so are the costs.. We eventually got a diagnosis for Sinan of Autism with PDD.
Needless to say even with insurance, the out-of-pocket costs for getting the necessary tests are highly expensive. A series of blood tests ordered for Sinan cost more than $4,000. Every specialist you see has to evaluate the child and these charges run around $1,000 each time as well. We were then referred to a neurologist who specializes with autistic children. We were directed to have a set of blood tests performed to rule out any other possible issues and then given an appointment for a MRI to be administered.
Our out-of-pocket costs just keep building and building. The real kicker is that the only therapy shown to have a positive impact on kids with Autism is called “ABA” or Applied Behavior Analysis. The irony is that there is a glimmer of hope for austistic children with ABA therapy yet the majoriy of insurance companies will not cover this treatment. There are a few states which mandate ABA coverage by law, but not many and unfortunately our state is among those which does not.
You can donate via the PayPal button on Abu Sinan’s blog. Also, please see sister Fairuza’s (AKA Sabiwabi’s) article on the same subject.
Also I would like to draw attention to this post on the Scottish-Islamic Foundation’s blog. It’s about Imran Sabir (you can read his story here, which was written before he died in March 2009), who founded Ethnic Enable, an organisation which supports people of ethnic minorities with disabilities in the Glasgow area, and Kitaba, which furthers educational opportunities for visually impaired Muslims, by means of translating books and working to improve accessibility in religious institutions and by educating religious leaders. Kitaba launched a book, Living with Blindness: Lessons from the Life of Imran Sabir, on 4th October, written by Abdul-Aziz Fredericks and with a foreword by Zaid Shakir; you can order it (£5.95 + P&P) here. The blog post also includes a moving poem, A Disabled Society, about the rejection often faced by disabled people in South Asian families.
Possibly Related Posts:
- Harassment “commonplace” for those with learning disabilities
- Ricky Gervais on ME, and other bad comedy
- Qadri’s fatwa breaks no new ground
- “Hijab gates” bring out the bigots
- Gilderdale, Schiavo and models of disability
Thanks for linking to this Yusuf.
FYI, the Baseera Institute (school teaching Islam & Quran to the blind) is holding a fundraising dinner this coming Saturday, insha’Allah. 5pm, LMC, Whitechapel. More details on their website. iMuslim´s last blog ..And She Gets Back Up
Rather than asking for money, would their time better be spent writing to the 435 members of the United States House of Representatives and the 100 members of the United States Senate to get them to pass Health Care Reform ?
Don’t get me wrong I sympathise with the plight, but if others from around the world keep sending money to the US what incentive do they have to pass reform.
The US spends more on heath care per head of population than any other country and a higher proportion of their GDP than any other country yet they don’t have universal coverage - go figure!
Codf1977, there is no reason why both asking for assistance, and writing Congress can’t be done. If you were a parent watching as your child suffered, you would do everything you could to help them.
Also, if you really want to express sympathy, never end it with a “but”, because it negates every bit of sympathy you thought you were expressing.
Best
They actually have tried that route, Codf1977. Maybe you’ll take a look at this and realize what average, everyday people in the States have to do to try and get the point across to government.
http://theloudounproject.ning.com/
If you’re on Wall Street, you get a bailout. If you an honest, hardworking, tax paying citizen, you get nothing.
The problem with US health care is, to be blunt, indicative the whole US political system. It end’s up serving the special interests of those that have the money to lobby for their corner. The current heath care providers are happy with the system, they make profits on similar scales to the financial industry and they don’t want that to change so they can afford to lobby members of the House and Senate - doing so by giving large amounts of money to their re-election campaigns.
Sorry to pour a big bucket of cold water on this, but I doubt whether these medical tests are necessary. As far as I am aware, they are not standard in the UK - such tests would probably only be requested where autism was thought to be linked to an additional medical condition.
ABA is a big money spinner, and somewhat cultish, in my view. Despite being endorsed by the government in the US, it’s long-term efficacy is contested. It’s empirical claims tend to bipass children who regress after treatment stops - i.e. children at the lower end of the spectrum. There are other therapeutic and educational approaches which can have a significant impact on quality of life of children with autism (rather than just ‘integration’, as per ABA). Son-Rise is one - although that’s not cheap, either. There is less empirical evidence to support Son-Rise, but the anecdotal evidence that it improves quality of life for both child and parents is substantial and compelling. A similar approach - intensive interaction - is more accessible, and may be similarly suitable for children with profound autism.
There is NOT a single approach in either education or therapy that is suitable for even MOST children with autism, never mind all. Find the approach that suits your child - it may be ABA. Listen to professionals, but remember, the experts on the individual child are the parents.
In short, I recommend research before committing to anything or forking out cash. And be very careful - autism has a long history of charlatans promising the earth. Facilitated Communication and Holding therapy are just two examples of approaches that have fooled many, only to be latter rubbished.