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Long-term care better delivered in community setting

Imagine you have a disability. Perhaps you were in a car accident or you are dealing with the effects of a serious illness. Disability will touch more of us during our lifetimes than many people realize. A recent University of Minnesota study predicts that 50 percent of people will need long-term care as a result of illness, age or accident at some time during their lives.

Thousands of New Yorkers every year are placed in nursing homes because that's how the Medicaid system works . . . or doesn't work. The system unnecessarily costs taxpayers millions of dollars and it costs people with disabilities their homes, dreams and independence.

The New York Association on Independent Living advocates for the right of individuals with disabilities to choose services and supports delivered in the community rather than in institutions. The association is a membership organization made up of about 30 Independent Living Centers around the state.

Medicaid policies and practices should be reformed to support and encourage community-based services so that people with disabilities can live in their communities.

Independent Living Centers around the state have helped people like Brian, a young man with spina bifida who was placed in a nursing home in Rochester at the age of 14. He spent seven years in the nursing home, and was unable to continue his education or prepare to be an independent adult.

Yet after only a few weeks of services and skills training, Brian was able to live on his own. Today, at 24, he no longer needs Medicaid-funded home care and has moved to North Carolina where he is excited to start a new life and attend college.

Independent Living Centers offer people with disabilities the resources and supports to live independently and to fully participate in their communities. The centers are operated by and primarily staffed by people with disabilities.

We want what everyone wants -- to live in our own homes, do the work we choose, spend time with friends and loved ones, come and go as we please.

Although people with disabilities may need services, such as home care, it is almost always less expensive for people to receive these services in their communities than to pay for nursing home care. In a recent four-year period, the Independent Living Centers working with the association helped 791 people leave nursing home care and prevented the institutionalization of more than 4,000 others. This saved New York State nearly $350 million over four years.

People with disabilities are your neighbors, your parents, your friends, your children and, maybe one day, you. We all have the right to live our lives in a manner that allows us to fully participate in our communities and enjoy the opportunities for a full and satisfying life.

Melanie Shaw is the executive director of the New York Association on Independent Living in Albany.

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