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February 22, 2008

Politics and Special Needs Children are like Oil and Water. . .


They don't mix!

Every election year, the candidates try to outdo each other by hitting all the keys words: universal health care, education and this year's flavor of the month, autism. All children should have access to health care and we need more funding for autism research. Can't argue with that!

And therein lies the problem, none of the candidates will address the more pressing issues that we as special needs parents face every day of our children's lives:



  1. Co-Pays and Out-of-Pocket Expenses for medicine and therapies that even the best insurance does not pay for.

  2. Private tutoring, classes, audiology services and speech therapy not provided for under IDEA or NCLB.
  3. Respite care.

The list goes on and on.



As a newpaper Opinions Editor, I constantly get e-mails asking me to publish editorials and public service announcements from politicians, candidates and private activists promoting public causes.

Ironically, no one listens to my opinion, except my dedicated blog readers.

To prove this point, I recently e-mailed the three top presidential candidates asking them to express their views on specific funding and legislation for special needs children. Here's what I said:

As a parent of two special needs children, I have reviewed your plans for comprehensive medical care.

However, I do not see any provisions for providing for supplemental services such as occupational therapies for autistic children or coverage for out-of-pocket expenses for co-pays and medications for chronically ill children.

I have excellent health coverage, but still pay thousands in out-of-pocket costs each year for my special needs children.

What provisions do you intend to include to cover such out-of-pocket expenses?

I received almost instant responses from two of the candidates. Both candidates cordially informed me that they receive thousands of e-mails daily and cannot respond individually, but please see our website for detailed information on the issues.

Hello?

I read their opinions on their websites before I e-mailed them.

I'm still waiting for a response to the candidate I currently support. Rather than be insulted, I will assume that this particular candidate is taking the time to formulate an intelligent response.

Today, I received a government press release informing me that a bill is being introduced to extend Georgia's special needs scholarship to students, who attend failing schools. The press release starts out with : "Hold on children. Help is on the way!"

My response:

Why don’t you add a provision to the scholarship act allowing the parents to choose the school. The scholarship act is useless to parents of children, who qualify, when no local schools are registered with the state to accept the scholarship. My own daughter qualifies for an extensive scholarship, but no private schools in our county qualilfy.

We thought help was on the way last year. We're still waiting.

I've become an expert at the waiting game. I grumble, I grouse, I whine and I wait for someone to listen.


On that note, I would like to close, with a short success story.

A close friend or mine got tired of waiting for her son's doctors, her insurance and the school system to provide for her hearing-impaired son. She took the initiative, as we all do when are backs are to the wall, and researched available grants. I am happy to report that she and her son received a $2K grant for a hearing-aid device, which will help her son in school.

Nianya