Health Care Reform Act Needs Your Stories

I am the mother of a 13 yr old quadrapelegic with seisure disorder and cerebral palsy. My son’s disability and trying to obtain goverment services has certainly affected our lives. He waited on a list for approx. 9 yrs to recieve medicaid benifits on a spendown program called “class”. It is my understanding that the state of TX was sued at one point which was when he moved up the list to recieve services. We moved to TX when he was two yrs old and did not have any insurance. He began having focal siesures, which we knew there were a problem but didnt know exactly what was to come. We searched for help and had found the Blue bird clinic at Tx Childrens hospital but were not able to to see a Dr. before he had a seisure that landed him in the hospital. Paramedics had pump him with so much phenabarbitol to get him to stop seizing that 3 days later they were telling me they did not know if he would wake up.Thank God he did and recovered. I feel thousands of dollars could have been avoided had services been made available. I was not able to leave my son to work until my son was on the Class Program. There should be more input by the familes who care for the disabled. I now work for the public school system in special education transportation. I make $9.61 an hour and the class program pays a care giver approx. the same to come into my home and care for my son as I am not allowed to care for my own son as his caregiver until he is 18 yrs old. Just recently I saw on the news in Corpus Christy TX where the so-called cargivers of a state run center were making the special needs residents fight and taking pictures of it on their cell phones! Yes I believe that people are better being treated with respect no matter what their disability is. We have lived in a rental home now since coming to TX and dont see any way to own our own home. I try my hardest to keep a roof over my childrens’ heads and feed them. You see we are the ones who live just above the dirt road who dont recieve government housing and foodstamps. I spend much of my time filling out paperwork to quailfy for medical services for my kids one is on medicaid and the other on chip. If you try to increase your income you dont qualify so why try, right? I see many families every day on my job who deal with the same issues; different disabilities, different age groups but the same issues. Please see that we are all human and really all that needs to be done to see this is for everyone to envision themselves as the disabled person.What would you want if it was you? or if it was your loved one.

The blog is quite noteworthy, as it mentions plenty of aspects for how organizations could help elders with the homely environment.
I congratulate the author.