IN

I am responding to the request for comments regarding a proposal for Medicaid beneficiaries to be given the opportunity to self direct their Waiver funds- CMS- 2229-P. We are the parents of a 25 year old, profoundly disabled daughter, Sara Beth, whom we have always cared for in our home. In Januray, 2008 her father retired from 37 years as a teacher, and I am a retired nurse of almost 30 years- we are taking early retirement to devote ourselves full time to caring for Sara as long as we are physically able. Sara has had a DD Waiver for 15 years and we have not utilized it much until she became an adult and we have needed more assistance to care for her. But we have had literal NIGHTMARES with the complicated and unfair Prior Approval process! We tried for 3 years to acces funds for a minivan with wheelchair accessibility. We were denied and ignored for those 3 years and now are lifting our 90# daughter and her 50# WC into our regular minivan. We have been working through the process to have a bathroom made WC accessible with overhead lift system for over a year now. We are also in the process to obtain a hospital bed with special mattress that Sara's physician ordered December 30th after a hospitalization and aspiration. It still has not been approved though it is considered essential for her health. We realize this has saved the government thousands of dollars-- since none of Sara's needs have been approved and paid for thus far. But the time Medicaid staff spent reviewing, denying, reams of paperwork sent to us. untold paperwork and health professional letters and Rx we obtained and submitted and the tears and anguish we experienced cannot even be relayed here. The PA process that Medicaid requires increases costs to the government and does not allow for individual needs. Sara's father has a MS in ED. and I have a BS in Nursing- if we are not competent to best decide Sara's needs and use her funds carefully I do not who is. I certainly we are infinitely more qualified than the person who sent us nurmerous Medicaid Waiver denials! We continue to care for our dear daughter at home because we love her and know she needs us- Medicaid has never shown itself to be supportive of our position. We want to be given the chance, in Sara's behalf, to make her life as happy as possible despite her disabilities. Her family making the decisions of how and when to access the Medicaid Waiver funds that are allotted in her name, for her individual needs is the only way to assure this. Thank you, Susan Dockter North Manchester 260-982-4941