Updated on 1/14/2013 9:15:17 AM.
The Vanderbilt Kennedy Center, through its Tennessee Kindred Stories of Disability project, has compiled a booklet for legislators to share the experiences of families who are on the waiting list for home and community-based waiver services. An annual collaboration with The Arc Tennessee, the special edition booklet was developed with the hope of increasing the likelihood that new funding would be allocated to the waiting list.
According to 2012 records, over 7,000 people are on the waiting list in Tennessee. The booklet breaks down that number of individuals by county to give legislators a better idea about the needs in their own districts. The stories are varied in terms of age, county, disability, family unit, and socio-economic status. One consistent thread throughout is the lack of access to supports and services, mainly due to financial barriers. Perhaps the most consistent theme is the parents’ fears about what will happen to their sons or daughters when they are no longer able to care for them. One participant states:
“We always thought there would be a place for our son when the time was right and when we needed residential placement. We had no idea what we would be facing today. I have no idea what will happen to him when we are no longer able to care for him. It would be best for him if we could find a way to ease into a residential placement. It’s hard for people with autism to transition into new settings. I would feel more at peace and he would feel more at peace if we could help him transition to a new home while we are still here. During the past several years, we have had a number of case workers assigned to us but it is meaningless to us now. Nobody can help us. Year after year, all we ever hear is there is no funding. Will there ever be funding? It is so unfair to us and to him. We need residential services now. I feel like if we got waiver services today it would be like being let out of prison."
The stories in the booklet were collected by graduate students enrolled in a course in the Vanderbilt Department of Special Education. As part of a course assignment, students were educated about the challenges families on the waiting list are facing. They were then paired with families to conduct in-person interviews and learn first-hand about those challenges. The interviews were written as narratives and then compiled into the booklet. Booklets will be distributed to legislators at the annual Tennessee Disability Day on the Hill (January 30, 2013) and at the Disability Policy Seminar in Washington, DC in April.
Click here to view an electronic version of the booklet.
For more information on the Kindred Stories project, please contact Courtney Taylor.
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