UCP Executive Director Post to Change.Gov

January 19, 2009 at 5:19 pm 1 comment

The inauguration of a new president takes place tomorrow. Like many Americans, I am proud that our country is an example to the world of what peaceful and orderly change in government means in a democratic society. The Obama Administration has developed a website called Change.Gov, where they are asking for input from indivdual citizens on how to change government. Following is the post I entered today:

I work for United Cerebral Palsy of Middle Tennessee. In our state, people with cerebral palsy and developmental disabilities other than mental retardation do not receive dedicated DD services. In fact, our State Department of Mental Health and Developmental Disabilities doesn’t even serve people with Developmental Disabilities. In my job, I interact daily with young families who need intensive home and community based supports that are not available to them. To make matters worse, because our state has no intention of serving this population, their critical needs are not even registered on a waiting list.

In my personal life, my husband and I assist in caregiving for my mother, who has Alzheimer’s Disease. We are providing home based care for her because we believe home is the best place for her to have quality of life. Because there is no source of funding for home based care, my father is spending over $100,000 annually out of pocket to bring in personal supports for her.

My husband’s mother recently passed away, and we are now taking over guardianship of his adult sister, who has an intellectual disability. Along with many other families, our family has been overwhelmed with the caregiving needs of persons with severe disabilities. We have learned that there is no consistency from state to state, or by functional need, in the services that people can receive. We have also learned that there is little access to caregiving supports for individuals who do not meet complicated and illogical eligibility requirements.

As this Administration seeks to stabilize the economy, we see this as a critical need and a way that non-skilled workers can be employed in jobs that have genuine meaning. As the baby boomers are aging, the needs for home and community based care for the disabled are increasing every day. We would very much like to be involved in an effort to develop a national policy and standards for every state in providing Home and Community Based Services for people with disabilities that takes into account age-appropriate supports as well as the unique needs of families. As Americans, we have a responsibility to care for our loved ones in the most humane and loving way possible. Please accept our offer to volunteer in this effort.

There are major changes needed to the Medicaid and Medicare programs. If we make these changes, and if we work together through state and local initiatives, we can put Americans to work in meaningful jobs. We can serve citizens with the most critical needs in the way they and their families deserve to be served.

Deana Claiborne
UCP Executive Director

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Entry filed under: Public Policy.

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1 Comment Add your own

  • 1. Chrissy  |  January 20, 2009 at 2:21 am

    A memoir I recently read and fell in love with called “That Went Well”, was written by Terrell Dougan who was her sisters caregiver as she was special needs.

    Its the most honest memoir I’ve read in a long time. Should be a guide for folks who hand out well-meant advice to parents of kids with special needs. Really opened my eyes.

    Reply

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