Family Voices Indiana

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 . First of all, my family has never benefited from a Medicaid Waiver. When my son was born in 1986---10 weeks premature and diagnosed with a rare condition which required a tracheostomy and ventilator to breathe, there were no such waiver programs in the state. We had private insurance, but were left with tens of thousands of dollars of out of pocket expenses after his first hospitalization of nearly 6 months. I was raised by a fiercely independent family----my father, Gordon Gilmer, was an elected official for 29 years, that taught me to “take care of my own”---work hard, pay your bills (and your taxes) and when problems arise---you deal with it. However, the staggering amount of medical bills we incurred was not something you could “manage”. Plus, the hospital wouldn’t even let hi

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 . When our child was born with two rare genetic syndromes, she was in the hospital for four months struggling to survive. My husband and I were struggling with how we were going to meet her immediate and long term needs. He is a teacher and I had to quit work to care for her. We had private insurance, but she was a “million dollar baby.” We were quickly approaching our private insurance policy’s lifetime cap, and our out-of- pocket costs were staggering. We did not consider a nursing home for her. We wanted her home with us, where she belonged. But we needed help. Our private insurance stopped paying for home nursing, and it never covered her specialized nutrition and other needs. Thankfully, she received the Aged and Disabled waiver when she was less than a year old. This allowed us to

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 . 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 p

Indiana 1001 Budget: Medicaid Waivers: Share YOUR Voice Tuesday April 26th Starting at 10:30 Indiana Statehouse, 200 W. Washington St., Indianapolis The Indiana House and Senate are considering a Senate amendment to HB1001, the budget bill, called Section 139 that would tie Medicaid waivers to parental income and institute other measures that could eliminate thousands of children and adults with disabilities and special health care needs from waiver coverage. On Tuesday, families and self advocates will gather to ask our legislators to remove Section 139 from the Senate Amendment of HB1001. If you can come on Tuesday: The House will convene on Tuesday, April 26 at 9:30 a.m. Senate will convene on Tuesday, April 26 at 10:30 a.m. Plan to come anytime! If you would like to meet with other families able to help you connect with your legislator, meet in the rotunda (lobby) at 10:30 a.m. Identify your Legislators http://district.iga.in.gov/DistrictLookup/ o If you can do this before Tuesd

Tuesday April 26th Starting at 10:30 Indiana Statehouse, 200 W. Washington St., Indianapolis The Indiana House and Senate are considering a Senate amendment to HB1001, the budget bill, called Section 139 that would tie Medicaid waivers to parental income and institute other measures that could eliminate thousands of children and adults with disabilities and special health care needs from waiver coverage. On Tuesday, families and self advocates will gather to ask our legislators to remove Section 139 from the Senate Amendment of HB1001. If you can come on Tuesday: The House will convene on Tuesday, April 26 at 9:30 a.m. Senate will convene on Tuesday, April 26 at 10:30 a.m. Plan to come anytime! If you would like to meet with other families able to help you connect with your legislator, meet in the rotunda (lobby) at 10:30 a.m. Identify your Legislators http://district.iga.in.gov/DistrictLookup/ o If you can do this before Tuesday, send them an email and leave a phone message telling

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 . I am not a native Hoosier. I moved to rural Boone County 15 years ago to marry the best man I know. At the time, he told me Indiana is a great place to raise a family: people work hard, know each other and care about their neighbors and their community. He was right. Indiana is a place where people are still connected; they want to help their neighbors and contribute to their communities. I am proud to be raising that kind of family. My husband and I both work hard, we each have – and have had for our entire marriage – multiple jobs, we volunteer in every way we can and we work to raise the best kids we can. Our family does look a little different than others, though. Both of our children have Mitochondrial Myopathy, they both have very complicated medical needs, they use wheelcha

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 . We are a close family of five who feels very strongly that Section 139, an amendment introduced Monday to HB1001 concerning Medicaid waivers, would harm our family and many others. My husband Brad is a middle school science teacher who has a second job teaching online chemistry from home, and I work three part-time jobs. We have pieced together this life to make it possible to support our son Kyle, now 11, who has Down syndrome, autism, is a leukemia survivor, and has a primary immune deficiency, recurrent gastrointestinal infection, and a few other special health care needs. We have two other sons at home, as well. We pay for primary health care insurance through my husband’s employer that is the first payor for Kyle’s many medical and therapeutic services. In the year before Kyle rec

FV Indiana members and other advocates were at the State House today and were able to Hear Senator Kenley's remarks to his Senate colleges, he promised he would continue to work on that section of the budget bill that address Medicaid Waivers. The goal, he said, was to ask those with the very highest incomes — he singled out people like Indianapolis Colts owner Jim Irsay — to contribute funds if they were in such a situation with a child. But, he said, care for disabled children can be extremely expensive, and he wanted to ensure bill didn’t cause more difficulties for families already struggling with a child’s medical problems. Now that the budget has passed out of Senate with the language intact we must call on all of our Legislators in the House and Senate to make sure this issue is addressed in the final version of the budget. Please continue to call, write and visit your legislators. Ask your friends, neighbors and colleges to do the same. • We must share that face in

Several FV Indiana members are joining with others today to gather at the Indiana State House and share our concerns about the changes to Medicaid Waivers outlined in the budget. We would love to see you. If you can not come in person please participate by contacting your representatives , Talking Points: Section 139 makes huge changes to Indiana’s Medicaid Waiver program for children and adults with disabilities and special health care needs. o These changes have not been discussed in committee o The public has not had the opportunity to give input o Families have not had a chance to share their perspective One change in Section 139 (tying Medicaid waivers to parental income) would allow the Office of Medicaid Policy and Planning petition the federal government to amend Indiana’s Medicaid waivers in such a way that services would end for thousands of Hoosier children living with families who are working to meet their needs. The loss of waiver supports will force some parents

FV Indiana has heard from several members about their communications with their Representatives. First, THANK YOU for all of your efforts, your voice is important. Second, as of the posting the issues has NOT been resolved. Some Senators are sharing that the language will be changed from “shall” to “may”, this is not a successful resolution, “may” means that they still could make the change, and that the decision would likely be made outside of the legislative process. Many FV Indiana members are finding it helpful to read the bill to prepare to share their thoughts you can find the current language online . Families need to continue to contact their elected officials. Please share that issues around medical financing are complicated and any change should be carefully considered with time from expert and public input. You can stay up to date on any changes by following the session live online online . You will be able to see any changes via bill tracker Thank you for sharing you

FV Indiana joins with other advocacy organizations to urge our members to contact your state Senator and Representative today about changes to Medicaid Waivers contained in the State Budget as approved by the Indiana Senate Appropriations Committee on April 18, 2011. If the bill passes as amended, Indiana's office of Medicaid Policy and Planning would be required to ask the federal government to amend Indiana's waiver program to no longer disregard (waive) parental income for children under the age of 19 in order to allow those children to receive Medicaid waiver services. The direct effect of this is an estimated 1,500 children currently on the DD Waiver, Support Services Waiver and the Autism waiver would no longer be eligible for critical home and community supports. You can learn more by reading the Arc of Indiana's Action Alert You can read the proposed language by visiting the Indiana Bill Tracker for HB 1001 The language around this issue is found on page 198

In honor of Tax Day, FV Indiana shares our member's stories about the benefits of tax supported services: Special education is no cure for my son, but every day he learns new skills that one day could mean the difference between living at home or in a living facility. No public dollars spent on children with cognitive disability are ever wasted. They fund autism programs, speech therapy, and technology to aid communication, motor skills and behavior intervention. Schools are sometimes the only training a child receives making them the front line in development of interventions, technology and innovations to make lives more independent in the long run. Without special education and teachers, families who are already struggling with disability would be on their own. Janice Benson

In honor of Tax Day, FV Indiana shares our member's stories about the benefits of tax supported services: Several tax supported programs have helped our family over the years. My daughter Maddy has a mild form of Cornelia de Lange Syndrome (CdLS) and Pervasive Developmental Disorder, Non-Specified,(PDD NOS). At the age of 9 months old, we observed global developmental delays, so we had her evaluated by First Steps. She qualified for Speech, Occupational and Physical Therapy and remained in the program until the age of 3 when she entered Early Childhood in our public school. These early interventions had a huge impact on her development. She walked at 17 mos. old and began to talk at 3 years old, after we weren't sure when or if she would ever reach these milestones. From Early Childhood, she then transitioned into Lifeskills in Kindergarten and then Functional Academics in Second Grade. This Special Education curriculum helped her achieve many goals, including self care

In honor of Tax Day, FV Indiana shares our member's stories about the benefits of tax supported services: When I hear people grumble about the amount of taxes they have to pay or the number of "deadbeats" abusing the system I wish they could meet my children and understand the true difference those tax dollars make in the lives of many. I have two children, Joe is 7 yrs old and Mikayla is 8 months old. Joseph was born with a rare brain disorder called Schizencephaly. There is no known cause for the disorder. It has affected his development and health significantly. But don't let the fact that he is in a wheelchair or can't speak deceive you into thinking he isn't "normal". Like many other 7yr old boys he loves trucks and bugs and guitars. He is very social and wants nothing more than to be part of the group. Throughout his life Joseph has received help from various programs that are paid for by tax dollars. He has been able to receive the supports he