Story by Anita Cameron
I live on my own. I travel, shop and visit friends. I’m a businesswoman, a community organizer, and I vote. I’m an ordinary American.
Except that I’m not
ordinary. I am a person with multiple disabilities, and the fact that I
live in the community may concern some people.
Many regard those
of us with disabilities as sick, helpless and vulnerable. They feel that
we are unable to make our own choices. We are often denied the basic rights
that others enjoy — the right to an education, to work, even the right
to live in our own homes.
Most people take living in their own homes for granted. For many of us with disabilities, that’s only a dream. We require help to perform basic tasks such as dressing, bathing and feeding ourselves.
Because of this, doctors and others decide that we cannot live independently and place us in nursing homes and other institutions.
Many people think that nursing homes are for seniors, but they exist solely for disabled people —disabled by birth, accident, illness, or old age. Seniors who are active and can take care of themselves with little or no assistance usually don’t end up in nursing homes.
People also believe that a person in a nursing home receives constant care.
Unfortunately, this isn’t true. Many nursing homes are understaffed and residents are neglected. Most of my friends who have been in nursing homes have threatened to kill themselves if faced with the possibility of returning. Why? In a nursing home, one eats, sleeps and gets up when the staff decides. Residents cannot leave the grounds of some facilities. There is often abuse, and thefts are common. Retaliation against complainers and punishment for minor infractions are a given in most nursing homes. It’s no wonder that many people feel they have no choices, rights or dignity.
Everyone deserves the right to live in their own home with appropriate services and supports. One type of service is attendant services. An attendant is someone who helps a person with the tasks they cannot do for themselves. Services provided at home are cheaper than nursing-home care. When my dad was in a nursing home after his heart attack, his cost for care was $650 a day. After he returned home and began receiving attendant services, the cost decreased to $75 a day.
States also save money. According to the Department of Health Care Policy and Financing, it cost the state of Colorado $385 million to care for 9,900 people living in nursing homes but only $200 million to care for 12,500 people receiving attendant services at home.
ADAPT has written a piece of legislation that would allow people with disabilities to live in their own homes.
The bill, called MiCASSA
—Medicaid Community-based Attendant Services and Supports Act — has been
reintroduced into Congress.
Eligibility is based
on functional need rather than medical criteria. People of all ages will
be served and will have the choice of hiring, training or firing their
own attendants or leaving that to a home-health agency. A person could
receive attendant services anywhere, and the money that the states spend
to care for someone in a nursing home would follow that person into the
community.
MiCASSA is so important that ADAPT will march from Philadelphia to Washington, D.C., — 144 miles — to lobby for its passing. The march will begin Sept. 4 at the Liberty Bell in Philadelphia and end Sept. 17 at the Capitol in Washington.
ADAPT will then spend the next day meeting with members of Congress and the Senate to urge passage of MiCASSA. Perhaps one day, the sight of people with disabilities living, working and playing in the community will be an ordinary one that no one thinks twice about.
Anita Cameron, 37, lives in Denver and is a member of ADAPT, a national, grass-roots disability rights group with chapters in 47 states. Cameron, who has multiple disabilities, holds a degree in biology and has been a social change activist for 21 years. ADAPT may be reached at (303) 733-9324.
© 2003. Anita Cameron/Dread1myn Productions. All rights reserved.
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