Matt is 42 yo. Had a SCI in 1983 while climbing in kindergarten and had a fall causing severe pinching/swelling of the spinal cord causing C5-6 injury. He has had other unique health problems that, in turn, helped him and his family learn quickly how to advocate. His parents encouraged independence in as much as possible and helped create more accessibility in his schools. He also highly praised the IL/IA CIL.
He reports that it takes a lot of time and energy to find PCAs, train them and coordinate especially when you work from home and need to keep a schedule, which he does. It can cause significant stress which can cause physical and mental decline/increased health care costs which are difficult to account for in any quantitative research (like what has been attempted).
Matt got a new power wheelchair in June after being OKd through Medicare due to the fact that the electronics were failing in his 5 ½ year old wheelchair. Medicaid sent a statement denying payment for the chair a week after he received it. (Which seems ridiculous if the healthcare providers, doctor and Medicare all approved - example of denials just for denial sake - not everyone will appeal)
When MCO’s took over Medicaid, Matt had to fight to maintain the same level of waiver services that he has had since becoming an adult. In 2017, he filed a written appeal (calling is not enough) and had a state hearing by phone, before his hours were continued.
2018 he had to deal with the same issue but this time it took 6 months to get things straightened out.
He reports there is high turnover in case management - which means less experience and training to assist people. The assessment process is inadequate...used to be done by a RN but now by a social worker.