Family Voices Indiana

FV Indiana has been overwhelmed by the amazing efforts of our members and families across Indiana this week. Several of you have asked how you can support the work on FV Indiana, we are excited by your interest and share the following ways to be involved: FV Indiana shares our updates on multiple platforms, allowing our members and partners to connect in the way(s) that work best for you. Be sure you are receiving our information via your preferred platform: A Yahoo list serve has been created to allow timely dissemination of information on policy issues and opportunities for families to give input. You are encouraged to sign up for this list serve by accessing the following link: http://groups.yahoo.com/group/FVIndiana/ We are also on the web at http://fvindiana.blogspot.com/ “Like" Family Voices Indiana on Facebook On Twitter http://twitter.com/#!/FVIndiana Family Voices Indiana is a not for profit run entirely by volunteers and funded entirely by donations. Donations can b

FV Indiana wanted to share the impact of your advocacy. The final budget language is in place. You can read it starting on page 195 at: http://www.in.gov/legislative/house_republicans/pdfs/CC100101.pdf Many of our members have asked about the commission, the short answer is that these will be public meetings and you can and should engage in this process. FV Indiana will work to share details of meetings, agendas and opportunities for input as they become available. In the mean time please take some time today to contact your legislators and thank them for listening to your input, share that you continue to be committed to working with them to improve the complex systems that serve our state. And THANK YOU, for your tremendous efforts this week, you voice was heard!

FV Indiana was thrilled to spend the day with some amazing Indiana families, their friends and neighbors. After speaking with several legislators I can assure you that they are hearing from families. Your phone calls and emails have made an important impact. We know they are reading your stories; thank you for sharing them! As we move towards the finish line (Friday, April 29th, is the end of the session) we encourage you to continue to connect: Let them know that it matters to you how issues related to the Medicaid Waiver are resolved in conference committee. Let them know that you want the final decision-making power to remain in the hands of the legislature. Thank them for listening and for learning about our families. The relationships you are building with your legislators now will help to impact other issues in the future. Thank YOU for sharing your voice!

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 typical family with a mother and father and 2 beautiful children who have special needs. My husband works a full time job and I work part time and attend graduate school full time. Our daughter’s pregnancy was going along perfectly until the day she was delivered by emergency C-section at 28 weeks, 2 hours after my baby shower on September 17, 2005. She was 1 pound 6 ounces and 11 inches long and very sick upon birth. Makenna was transported to Riley Children’s hospital 45 minutes after her birth, as that was the soonest Riley or St. Vincent could get to her in. She was in the neo-natal intensive care unit for 87 days with numerous hurdles to overcome. Due to her extreme premature birth she endured many complications during her stay in the NICU. Makenna had 2 brain cysts, a le

TALKING Points for April 26, 2011 Indiana 1001 Budget: Medicaid Waivers: Share YOUR Voice The Indiana House and Senate are considering a Senate amendment to HB1001, the budget bill, called Section 139. It 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. Your Voice is being HEARD, Don’t Stop Yet! FV Indiana has received draft language of changes to Section 139 o The proposal is to use a Medicaid oversight commission that would oversee changes to the waivers including:  Calculating budget neutrality on an individual basis  Instituting a family care program  Evaluating placement options  Requiring cost participation for families whose income exceeded 500% of the federal poverty level. Family Voices

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 . Our son Sam has been receiving services through the support services waiver since he was three years old. He is now twelve years old. Sam was diagnosed with autism just before he turned three. While it was an extremely difficult time for us, we knew we would do all we could to help Sam get the help he needed to learn to communicate and achieve in every way despite his challenges. Sam received therapies through First Steps in our home until he turned three. At that point we were fortunate enough to receive waiver services and thus were able to ensure that Sam got some of the therapies he needed as they were covered by Medicaid. He went to Occupational Therapy twice a week and Speech Therapy once and week as well as Physical Therapy once a week. Our private insurance would not hav

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 . My daughter was born at 23 weeks 4 days. She has surpassed all the odds that were laid out for her at birth. She did suffer from a level IV intraventricular hemorrhage at birth. Because of this she does not sleep hardly at all. Her neurologist has done all they know to help her, but nothing works. She is fed through a GJ tube. It is VERY important that I continue to have our Medicaid waiver that enables us to have nursing in our home. This way it allows me to sleep and function during the day. I have Multiple Sclerosis myself and it is imperative that this continues. This would be detrimental to our family. My husband works full time and we have limited support from family and friends. There is no way we could pay for this nursing without our Medicaid waiver. Also, with her medical n

Voices of Indiana and the Disability Concerns Network of the UMC Indiana Conference are co-sponsoring: An Advocacy Day for Children with Disabilities Message for the General Assembly: Don’t Dismantle Medicaid Waivers This 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 HB1001. What You Can Do: Share this message to anyone who will help us. Come to the Statehouse on Tuesday: We will gather in the Rotunda (main floor) at 10:30 a.m. Plan to come anytime! We will have a person in the rotunda to direct you where to go thro

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 a foster parent that is in the process of adopting a medical fragile 2 yr old. He was injured in a car accident due to neglect of his bio mother at age of 13 months he had occipital dislocation ( where his skull came off of his spinal column) he is now a spastic quad, has autonomic Dysreflexia, neurogenic bowel and bladder, gtube, he is on full life support. He weighs 31.5 pounds and we live in a two story house and carry him up and down the stairs several times a day so that he can be with the rest of the family. If I did not bring him home with us they wanted to put him in a rehab facility. Mind you he already had a decub ulcer on the back of his head from the hospital stay of only 1 month. He would have went to that facility and laid there to die. I have worked in those facil

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 writing about SB1001, specifically section 139 and the Medicaid Waiver provisions. The language that allows FSSA to abandon the current policy of disregarding parental income in order for a child to be eligible for Medicaid waivers and the Medicaid health care coverage must be removed from this bill. I understand the need to cut costs and the authors are trying to target the “Jim Irsays” of the world, but frankly, the Jim Irsays are not really an issue because they would never drop private insurance in favor of Medicaid only coverage anyway! Private insurance typically offers far more coverage and choice than Medicaid, so it would be foolish for people to drop it simply because they got a waiver. The people who do drop their private insurance are doing it because their own insura

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 . My daughter, Maddie was born with spina bifida. Years later, we received a diagnosis of autism. Our daughter has always been our top priority. We have always done what is best for her. Without Medicaid, we don’t know how we could have paid for her medical needs. My daughter is only 12 years old. In those 12 years, she has had 12 surgeries for her spine, bladder, hip and eyes. All of them helped increase her quality of life. None of them would have been possible without the Medicaid Waiver. At one point before we got the waiver, I had to take a voluntary pay cut to keep her on Medicaid. I had no insurance through work and my husband was not employed. Medicaid was our only way of covering her medical cost. Now that my husband is working and making a good wage, I can stay ho

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 . For the last 15 years, I have worked with children who have special needs. I began as an instructional assistant in a classroom at a special needs school that closed at the end of last school year, due to budget cuts. The children in that school were all scattered to their "home" schools. I then secured a position as an instructional assistant at a school within my district. Shortly into the present school year, I had an opportunity come my way that I couldn't pass up. The parents of Hailey, one of my former students, learned that they had "nursing care" hours available to them due to Hailey's specific medical needs. They use these nursing care hours by employing me as a full-time caregiver/lifeskills teacher during the time they are both at work. I

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 . Having the A & D Waiver Medicaid Services for our son over the years has truly been a blessing for us because it has allowed us to have handicap accessiblity for him in our home. He is wheelchair dependent; and without the services provided by the waiver, I really don't know how we would be able to care for him in our 2-story home. Our primary insurance would not cover any of the equipment needed to access our home, so we had to depend on the Waiver for coverage or just basically not have the supports needed to care for him in our home. In the future and as he grows into adulthood, I'm sure we will need additional additions to our home to support him in his daily needs, as well as more durable medical equipment for him; and if these services were lost we would be unable

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 . My daughter, Hailey, was born ten years ago. Everything about her appeared to be “typical” except that she was extremely slow eater. We took her home and did the best that we could. Her feedings would take hours to complete and she did not progress very quickly. First Steps began to assist us and we saw small improvements. She underwent many tests at this time because we did not have a diagnosis – we just knew that something was not right. Her growth was extremely slow, she was labeled failure to thrive, her milestones were miles away. We continued on, and because she did not have a diagnosis and because the range of normal is so wide at this young age, we incurred the medical bills using our own private insurance and out of pocket. Hailey finally received a diagnosis of 14q-

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 Joseph was born seven years ago we were sent home with what we thought was a healthy baby boy. It didn't take us long before we knew something was amiss. Joseph was not your typical newborn. He cried nonstop, never slept and had trouble nursing and drinking from a bottle. His growth was delayed and he wasn't developing head control. At four months old, after many doctor visits, ER visits, and failed attempts to help him he was admitted into the hospital for failure to thrive. It was during that hospital stay that Joseph was diagnosed with Schizencephaly. We were told that Joseph could suffer from a magnitude of things ranging from seizures, respiratory issues, developmental delays, physical delays, communication delays, etc. The list never seemed to end. During those