Please consider eliminating Sec.139 of HB1001. Our son, Daniel Cline, is 24 years old and has spastic quadriplegia cerebral palsy, non-verbal, wheelchair bound, incontinent, and requires a g-tube for his nourishment. Daniel was a full-term baby with no birth complications. At the age of 6 months old, our son was not hitting developmental milestones such as head control or rolling over. He was diagnosed as having C.P. His mother, Debbie, had gone back to full-time work by this time. The day we told our babysitter about his diagnosis, she quit and said she did not feel “qualified” to take care of Daniel anymore. I could not find a daycare at the time to care for our son either. Therefore, I had to leave my full-time job. By then, Daniel was starting to have hospitalizations of pneumonia and the need for a feeding tube/nissen to help him gain weight. Not being able to work while our hospital, doctor, and therapy bills, etc. were coming in made it difficult to keep our home. When it came time for Daniel to go to public school, we had the same dilemma, who was going to meet the school bus and watch Daniel after school so Bob and I could both work. The YMCA after-school care did not feel comfortable with Daniel, so I was not working full-time again even though he was in school. There were more hospitalizations after this time due to orthopedic problems and we still had a reduced income.
In 1996, Daniel’s name came up for the Developmental Disability Waiver. We were able to set up a plan to help us with the after school care where a staff person met him at school and stayed with him at the YMCA after school program to help him socialize, play, go to school sporting events, etc. with his peers until we picked him up at 6 p.m. after being able to work again. The waiver helped us with his briefs due to the fact he was unable to use child diapers anymore, helped us with his medical deductibles, and co-payments. When Daniel at 21 years of age completed high school, the waiver became even more important to our family. It pays for his day programming, a caregiver for the period after the day program ends for the day, so we can both still be employed. Also, we have the extra expense of a specialized van with a wheelchair lift. As you can imagine, this type of vehicle even used is not cheap, it is not great on gas mileage either in these days of approximately $4.00 a gallon of gas, however an absolute necessity to our family.
Having the Medicaid Waiver has changed our lives. It no doubt has given our son a higher quality of life, has probably increased his life expectancy because his care is given by loving, committed parents who were not so stressed by money issues, 24/7/365 care giving for years, and our being able to work gave us an outlet to maintain our quality of life too. Also, I am sure that having the Waiver has helped us to maintain our marriage of thirty years which enriches all three of our lives. Daniel is our only child and we are so very thankful to the Medicaid Waiver for helping us care for our son at home.
Robert, Debra, and Daniel Cline
Saturday, April 23, 2011
Impact of 1001 on One Family (three of thousands)
FV Indiana members are sharing what the impact of proposed changes to Medicaid Waivers will be in their lives. We share their stories, and encourage each of you to continue contacting your Legislators.