Having a disability and having to navigate through the systems of Medicaid and Social Security almost always brings people with disabilities to a point where an Independent Living Center (ILC) is necessary to navigate through information requested by our government in order to maintain appropriate benefit status.
In a world where the economy is in the toilet, people with disabilities are feeling this also, from threatening cutbacks to Medicaid services and Social Security. Of course these cuts are targeted at people with disabilities who are on a fixed income and could work if given the proper information and assistance. Every ILC will pledge to have benefits counselors, information referral specialists, technology assistance, and independent living skills training. When the dust clears from the person getting to their local ILC, they are disappointed because the person who is supposed to help is overwhelmed, underpaid, and sometimes even undereducated. They tell people myths that if you work, you will lose your benefits, so just sit back and collect their benefits and do nothing. When people with disabilities find themselves face to face with an advocate, the advocate will typically meet with the person and basically make the person do all of the legwork (pardon the pun). It seems to be that the only way people get this solved is not with the help of the advocate, but eventually the perseverance or severity of the situation.
Almost every ILC that I’ve been to had a job placement counselor, but they just make people look through classified ads, fill out a master application for employment, and send them on their way. They do not prep people with disabilities for interviews, call potential employers, or, most importantly, tell people with disabilities their rights to work. People in today’s world need to be able to work now. In my past I’ve had people tell me “Oh, we will not have any job placement counseling available for two years.” They just said that my disability was severe, and what job would I get if I need a personal attendant? They never told me about work incentive programs or other resources that would have been helpful in obtaining a job. Typically, it is assumed that disabled people don’t want to work because of the lack of incentives and the threat of losing benefits, or even housing. Advocates need to stand up and realize that people with disabilities need to work now, and that legislation needs to be put through so that people’s benefits are not interrupted by constant threats to loss of benefits and loss of Social Security. I do believe that if someone is making over $80,000 a year, they have every right and responsibility to help pay for their care, but should be able to buy in to their benefits. These days, some advocates just seem to want statistics and not really help the clientele that they serve. It is important to recognize that ILC’s are drifting away from the reality of what people with disabilities really need. There is no more funding for peer support and horrible cutbacks across the board in the State of California and other parts of the country as well. I guess it’s time for advocates to look at themselves and say “Advocates: what are we good for?” I will hope the answer will not be “absolutely nothing.”Nicholas Feldman resides in Berkeley, California with his fiancée. Nicholas received his B.A. and minor from UC Berkeley and currently runs Dare to Dream Attendant Services, a home care service that provides in-home care to all people with disabilities.
