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Reply to "squished into the sandwich generation"

I am now caring for my 21 year old disabled daughter. She is "total care" and had been in nursing homes and hospitals since she was injured 7 years ago. I recently brought her home under a Medicaid waiver program in order for her to be able to receive therapy. She could not receive therapy any other way--all therapy stops under Medicaid once a person reaches 21. I am interested in having a Medicaid reform campaign.

I put a post in the section on caring for adult children concerning the run around I get from the agencies and programs that are supposed to help the disabled. I advocate in person and by phone at least 6 or 8 hours every day. Sometimes I write letters to advocate on weekends I also am primary caretaker, so am alone in caring for Elizabeth from 7 p.m. until 7 a.m. during the week, and have an attendant for 5 hours on Saturday. I also have custody of my 9 year old grandson. I haven't the time to get more than 10 hours or so into a job each week.

Writing your elected officials in the government, (local, state, and national) will work. I wrote a letter to our governor and sent copies to every single elected official, state agency, and advocacy group that I could think of. Even Pres. Clinton got a copy. Contrary to my belief that the letter would be ignored, I have had a tremendous response to it. My phone hasn't stopped ringing. The calls are from people in authority who CAN and ARE doing something to help my daughter and to help me in this very hectic and scary transition period.

I had thought one voice would not make a difference, but it did. Imagine what a group could do!

Sincerely,

Marilyn A
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