Community Living Should Be a Choice for All
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, the right 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 may 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. Often, we are given no choice in the matter, and are sometimes tricked or coerced into going into a facility. I know - after being hospitalized for uncontrolled seizures, I was placed in a facility at age 19 because doctors thought that with my combination of disabilities, there could be no way that I could live on my own. No one took into account that I was already doing just that, and it took a year for me to convince the doctors to allow me to return to living in the community.
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 are not sent to a nursing home.
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 in 1999, my mother told me that 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 Karen Reinertson, Director of the Colorado Department of Health Care Policy and Financing, in 2002, 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, a national, grassroots disability rights organization has written a piece of legislation that would allow people with disabilities to live in their own homes.
The bill, called the Community Choice Act, or CCA - has been reintroduced into Congress. The bill numbers are HR 1670 and S 683.
The Community Choice Act, simply put, would give people with disabilities and seniors the choice to live in their communities. Currently, nursing home care is mandated by law, but home and community-based services are optional. This is known as the institutional bias. CCA would mandate these services, thereby providing a real choice, and ending this bias.
Eligibility is based on functional need rather than medical criteria, and is open to people who require the level of care usually needed to reside in a nursing home. People of all ages will be served and they, or their representatives will have the choice of hiring, training or firing their 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.
The Community Choice Act has come a long way from an idea in the mind of ADAPT members to a piece of legislation in Congress with bipartisan support. However, there is still a long way to go. Until everyone realizes that people with disabilities, no matter how severe or complex, deserve the same choices and rights that they, themselves have, we will still be bound by societal and institutional biases. As a person with a disability, and a member of ADAPT, I am working for the day when the sight of people with disabilities living, working and playing in the community will be an ordinary one that no one thinks twice about.
Sources
Bozeman, Alice, Personal Interview. December 10, 2009.
Reinertson, Karen, Personal Interview. July 18, 2003.
Summary Of The Community Choice Act. (2009). Retrieved December 15, 2009, from http://www.adapt.org/cca-summary.php
Published by Anita Cameron
Anita Cameron hails from Chicago, IL, and is the younger of twins. She holds degrees in Biology, and Computer Information Systems. Drawing on her passion for social justice and change, she became involve... View profile
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2 Comments
Post a CommentHi Mike! I strongly believe that aides should be paid a decent, living wage. It's a shame that folks who provide this vital service often don't get paid as much as someone who flips burgers, or works at a convenience store. Without personal care attendants, many people with disabilities wouldn't be able to do the most basic things.
My views hold true for folks who work in nursing homes.
Mike, the reason that I don't like nursing homes whether "good" ones or bad ones, is that people with disabilities rarely make the choice to go there, and often when they do, its because there is no real choice. Most states do not have attendant services programs, so people with disabilities often have to move to another state to be able to live in their own places. I know - I was one of those people, and a significant number of friends had to do the same thing. if you don't have the funds, or aren't connected to a group like ADAPT, you're stuck in that nursing facility.
The reason that this st
Anita, I agree with your advocacy for community living and for carrying out the legislation. On the point about nursing care being so lousy, that's not always true. My spouse has been an aide and I know of other aides who are very compassionate, even while they are so horribly underpaid that if they needed (or when they will need) care in the future, they won't be able to afford it. I believe the disability community (and all of us for that matter) should advocate FOR the aides, even if they work in nursing homes, not against them. ~~~ mike ~~~