Letters to the Editor
Monday May 13, 2002; 09:46 AM
The state treats inmates better than it does the disabled

I'm 30, live alone, and am on the aged and disabled waiver program. I'm now trapped at home, because the new policy says the homemaker can take me only to the grocery store, pharmacy and doctor. I'm without a full-time homemaker aide, because the agency I'm with refuses to pay more than $6 an hour, even though they got a $1 raise from the state that was supposed to be passed down to the workers. Since Feb. 1, when the state gave the homemaker agencies all the control, and case management very little, my life has been a nightmare. I'm my own case manager, but case managers have no control over anything anymore. People with disabilities or their families should be able to control their own services, and be able to purchase the services we need. I have cerebral palsy and suffer from severe depression, and I get 40 hours of service a week, but since I don't have a homemaker aide, I can't benefit from the hours. The Bureau of Senior Services says it made the change to help people with disabilities, but instead it is turning our lives into nightmares. It costs much more to live in a nursing home than to be on this waiver. Paul Nusbaum, the secretary of the Department of Health and Human Resources, should know that. He used to own a chain of nursing homes. We need the governor to act immediately. How many casualties of the system will it take?
I'm tired of being imprisoned just because I was born with a disability. It's terrible that prisoners in the jail system have more rights than people with disabilities. I just want the same rights that everyone else in West Virginia has. Is that too much to ask?

Vicki L. Shaffer
Morgantown

To attendees of the CORE meeting May 16, 2002

I have tried very hard to attend this meeting today, which makes me very frustrated because many of you can just get in your cars and go wherever you what. This meeting today is very important to me, because I wanted to make you aware that the current Aged and Disabled program is not working. It gives the homemaker agencies all the power to play God with people with disabilities lives. The agency I am now with has left me without help more than they have given it to me. The reason I stay with them is that they give me the power in which to hire and fire my own aides. Something unheard of before this agency started to do this, but there are several problems with this: the first one is that they don't give me any aides to chose from. The second is they won't give aides the dollar raise that was handed down to them from BOSS. So that leaves workers at Mcdonald's working more than the people that care for me. I'm sorry but playing six dollars an hour or anything less should be a crime. (I was paying $5.00 an hour for attendant services in 1989).
The Waiver needs to be self directed and have choices, not everyone with a disability has the same needs or wants. God did not make us all the same. Through programs like Let's Get A Life, we have shown this state that people with disabilities can direct their own services, and cost less or equal to the services they are now receiving. Why can't BOSS use Let's Get a Life as an example? By making the program more about what the people they serve want instead of the agencies that are supposed to serve the people want. The waiver should be people directed not agency directed. I have suffered with bad or no services for long enough. Has my agency American Homecare suffered or been penalized for not providing me the services that I am supposed to get? No, because the state values agencies more than it does me. There is currently no mechanism in place to ensure that people get the services that are afforded to them. So I am left day to day worrying when or if I will get services.
The current system does not value me or my homemakers. If you placed any value on me at all, I would not be sitting in my apartment alone, without an aide, and very frustrated. If you valued me. I would have the opportunity to be at this meeting telling everyone what is wrong with this program, and being an active participant. If you valued me, I would also be allowed to go out of my home, do social activities like everyone else, be training for a job that I want, and going to visit family, and friends. Instead I am a prisoner in my own home, just like the prisoners in a jail. A difference is that I do not have a prison number. On second thought yes I do there is my Medicaid number. Another difference is that I can pick the color of my clothes I do not have to wear orange! The last and most important difference is that prisoners know when they are going to be released from their confinement. People in restrictive settings (yes the waiver is now a restrictive setting) never know when they will be released. The only thing we have is hope that BOSS will start making the Waiver self directed so that we can live free and do the same things other West Virginians do.

Thank You,

Vicki L. Shaffer
Morgantown WV