I am so frustrated. They put him on a waiting list.
April 10, 2007 2:00pm CST
Hello. I am just so frustrated. I am the parent of a special needs child. He is 23 months old and suffers from cerebral palsy (severe spastic quadriplegia), brain damage, epilepsy, and a movement disorder. He was dead at birth and brought back after 9 minutes. So needless to say he is my miracle, however alot of work and special care. I applied for a program called title19 waiver, it helps with skilled nursing care and medical equipment such as wheelchairs,standers,etc. Any way after lots of paperwork and evaluations I was able to get him approved, however they say they have no openings at this point. They have placed him on a waiting list, his number is in the 200's and will probably take him two plus years to get in. This drives me insane. That is the best program in our area for these kids. I feel so defeated. It is so hard for us parents that try to take care of these kids at home,but if I would place him in foster care everything would be paid for. This makes no sense. You would think that they would do more for the parents that try to keep these kids at home. Why do they have to make things so much harder for us?
• United States
10 Apr 07
Did you apply for Social Security Disability for your child? If you are in the USA, apply for this for him. When your application is being reviewed, apply for In-Home Supportive Services, with you as the care provider, and your child as the recipient. This will give you more resources, including being paid, for the full time care your child needs. I know several mothers of severely disabled children (and a few who's children are autistic) who's children receive Social Security Disability, and mother is the paid care provider.
• United States
11 Apr 07
im sorry to hear of your fustration, but they might be doing there best too. there ight be more children with needs then they can cater too. he got approved and thats wonderful. in the mean time while you wait an opeing might come up sooner. find something else for him so that you can help him become the person he would be. i pray and wish you all the best.