Last week, the Health Subcommittee of the U.S. House of Representatives Committee on Energy and Commerce held a hearing on the Community Choice Act, a bill that should be of significant concern to feminists with and without disabilities. Several members of FRIDA are grassroots advocates for community choice, either through ADAPT or through their day jobs. For those who don't know what "community choice" means, it is essentially the ability of those with disabilities on Medicaid to choose where to receive services that support their daily lives, such as bathing and toilet care or a home aide who helps cook and clean. At this time, the vast majority of those on Medicaid who need such services are being forced into the nursing home and state institution industrial complex.
Stephanie Thomas of Austin, Texas, and one of ADAPT's national organizers, made the following comment in the course of her testimony to the Health Subcommittee in favor of home- and community-based supports:
"For the women on this committee, and the women who staff this committee and its members -- take heed. The vast majority of people in nursing homes are women over the age of 65, the vast majority of the underpaid direct careworkers are women, and the vast majority of women who are providing longterm care to family and friends for "free" are women. Is this issue swept so completely under the rug because of this? Who can say? What we can say is that most of you, men and women alike, will have to face this issue in the near future from one of these angles - a recipient of personal care services, a family provider, or through paid service provision.
"I faced it when my father-in-law came to live with my husband and me. A diabetic who had a stroke, he stubbed his toe and soon had to have first that leg amputated and then the other. His eyesight was going and so was his memory of things like whether he left the stove on. It would have been so simple for him to go to a nursing home; "professionals" of various ilks urged us to do it again and again! Despite the fact that my husband and I both have disabilities, we were able to keep him out of a nursing home, and living with us - with the help of attendant services. Today however, he would be on the bottom of an over 40,000-person waiting list and it is doubtful he would have reached the top before he passed away. I will face this again as my quadriplegic husband comes to need even a little more assistance, as my parents get older and -- hopefully last but not least, as I too age and need more assistance."
In the fight to keep people out of nursing homes and in the community, we are lucky to have well-spoken women advocates like Stephanie and many others. I feel that in today's feminist discourse, the spotlight tends to shine on reproductive justice and domestic violence. As deserving of attention as these issues are, I strongly feel that caregiving and personal assistance is also of critical, immediate concern to millions across the United States.
The people (largely women) who provide home and community based supports currently deserve to be well paid, recognized and respected for the work that they do. It is hard, sometimes back breaking, very personal work. I once worked as a personal care/workplace assistant for eight hours a day, and while my employer did her best to ensure that I felt valued and respected, the fact is that it can be a pretty tough job. You have good days and bad days. You have to be THERE, always. I was lucky enough to be paid for it. Millions are not. There are very talented caregivers out there who really go the extra mile to empower their clients, and we are just sticking their heads in the toilet. It is not fair. Recognition and a structure for home and community based supports at the national level is critical.