I have been thinking about the new Health Care Reform bills currently proposed. Having a handicapped adult son has given me a unique insight into government sponsored programs, including health care. It is frustrating dealing with government agencies staffed with, probably well meaning, but overworked employees. If our experience is what single payer health insurance is like I am pretty sure I will opt out.
Talking about our experiences is difficult. We try hard not to dwell on the negatives of our situation. However, after a good amount of thought and watching the conversation about the health care reform I am pulled to share.
Our son Matthew has severe handicaps. Once he turned 18 he became eligible for several government programs including health and certain "care" coverage. What each program covers actually varies with the state budget. The health insurance covers all "approved" medical as long as we go to the assigned doctor. The government health insurance (state run) does not provide for dental services after age 21. Currently we choose to have Matthew under Bob's work medical program, giving us more choices for his care and dental coverage. I like being able to find a doctor with whom we are comfortable. Matthew has had so many dental problems (due in part to his disability as well as his medical issues) that he needs the insurance coverage. Respite care offered by the state is a program that offers care givers some time off. Additional programs from the state include habilitation (working toward a particular goal) and attendant care.
In our experience, with each program we must allow more access of the government into our lives. Well meaning workers come in to our house quarterly and to make sure Matthew is being treated well. They observe our living situation. They can look in our refrigerator. Annually, I must account for money received from SSI. I understand that not all families are as cohesive as ours but these are intrusions, none the less.
Last year I had heard from a friend that one could be paid to care for a handicapped family member. I talked to Matthew's case worker and he agreed that this was so and Matthew was already scheduled for habilitation hours. He gave me the contact information for the intake worker who would get me started. I called and left messages but did not hear back from the person. After more than two months I asked the social worker to contact the person directly which he did. The intake worker gave me a giant stack of papers to fill out and informed me that I would need references and all adults in the house would need fingerprinting. I know you're asking, "To take care of your own son???" Yes.
I muddled through the paperwork, got my friends to write letters and met all the requirements. And met with the intake person several times. I had to take tests on appropriate discipline procedures, what to do for an emergency, how to fill out a time sheet and more. At that time the intake worker said that since I would have to take additional classes to be qualified for the habilitation program I could begin with attendant care. All paperwork finally complete she submitted it to the state for approval.
A month later I phoned to check on the progress and was told it could take three months. After three months I phoned again and left a message. No one called me back. Matthew's social worker came for his visit and let me know he was changing districts. Another month passed and I finally got hold of the intake worker. We made an appointment to meet and when I showed up at the office she had apparently "forgotten" and was off campus. What a waste of my time, when she finally appeared for our appointment she couldn't find the state approval or any of the paperwork. Naturally, she offered to call me as soon as she had everything straightened out.
In the mean time I received information from the agency who would take care of the paperwork for the attendant care. They mailed out 30 pages of information, each page requiring Matthew's signature. More privacy issues... and yes, he was considered the employer...even though he has no money and cannot fend for himself.
Almost nine months had elapsed from the beginning of this process. Finally, it appeared that everything was in order. But no. Matthew had never been evaluated for attendant care services. (You'd think someone would have noticed this.) So I was told he would need his new social worker to do an evaluation. Fine. Call and leave a message. Call and leave a message. Call and leave a message... you get the idea. Finally I pulled out the information letter and discovered a supervisor's name. After another two weeks she managed to return my phone call. They were very sorry...the new social worker assigned to Matthew was one of the few employees who is bilingual so he was very busy. Apparently too busy to return a phone call. But they could assign Matthew another new case worker. Good grief but what could I do?
The new social worker does his evaluation and lets me know he has sent off the required paperwork. A month later I remind him about it, after all it's been a year since I began this process. Oh, they got the information back but he has some questions. One, have I provided attendant care for Matthew in the past and two, has he been in a group home where it was provided? Let's see, the file should be in front of his face and the answer plenty obvious. In the end, he tells me that of course, I am not eligible to do attendant care for him because I am his mother. Now...I could have someone else come in to our house and they would pay for it. Or if he goes in to a group home and then comes back home it would be a different story.
The last thing he tells me is that he has discovered that originally I was going to sign up for habilitation. Well, that is very different. If I want to sign up for that I should let him know and he'll start the paperwork.
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