The old Billy Ray (before all the medical issues) is reemerging rapidly. Last night was a case in point. He woke up at 4 a.m. content to stay in his bed as long as I was in the room. Believe it or not, a lot of Parenting Your Complex Child was written from his computer in those nights.
I started a new book proposal last night about creating a life for lower functioning children and adults. As I worked the gnawing question was how will government red tape frustrate parents in trying to use my suggestions. The proposal was set aside and a letter drafted for a Congressman I think might be interested in trying to overcome some of that red tape.
If you have examples of how policies prevented your child or adult child from being able to do vocational or other things for fear of losing the medical care or other supports and would like to share with me for that letter to the Congressman please email me.
If we could work together to alleviate some of the red tape it would be better for taxpayers as well as people with disabilities. Maybe people with disabilities could contribute more to their own care if they were allowed to receive certain things without losing urgent medical care, etc.
Perhaps it is naïve to expect Congress to cut through red tape. On the other hand, they cared enough to create Americans with Disabilities (ADA) and the IDEA educational bill. Maybe they care enough to clean up some of the well intentioned but tangled in red tape government policies, which effect our children. It seems worth trying AGAIN.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Everything Upside Down!
13 years ago
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