SYSTEM
A
IS THE MEDICAID WAIVER FAILING INDIVIDUALS IN INDIANA WHO NEED IT MOST? By Tammy Short
There is a silent travesty happening in the state of Indiana. It is rarely discussed but affects a population that desperately needs representation. I’m speaking about the lack of service providers willing to accept disabled individuals with especially difficult behaviors and/or high medical needs. This is a systemic problem, and it is nothing short of discrimination against a group of individuals who require more care than other disabled individuals. Indiana implemented the Medicaid waiver in 1981. The purpose of the waiver was to provide services to special-needs individuals living at home with their families or in a residential setting that had support staff and behavior management. The waiver also made it possible for individuals living in state-run hospitals and other institutions to be incorporated back into society in the least restrictive environment that met their needs. On paper, this sounded wonderful. But the state was ill-prepared, and the program was grossly underfunded and understaffed. That was 41 years ago. Forty-one years! And yet here we are today, still struggling and fighting for the rights of those same individuals. While I am advocating for their needs, I am also advocating for my daughter, LeeAnn. She was born in 2000 when it was still rare for girls to be diagnosed with autism. At the time, the odds were one in 750 compared to one in 45 today. But it was absolutely evident by 18 months that something
14
August 2022
was dreadfully wrong with her. She received her autism diagnosis at age 2. Throughout her life, I have had multiple issues trying to find providers to serve her. I struggled to obtain home healthcare under the Medicaid waiver and then struggled with keeping direct support staff. Caregivers would quit or never show up, replacements would not be sent, and there were never any consequences. As my daughter began to age out of the school system, it was harder and harder to find anyone to care for her on a consistent basis. My workplace was very wonderful and allowed me to work from home. But without reliable support, I essentially already had a full-time job taking care of my daughter. It was almost impossible to do either job well, so I left my nursing career to become her caregiver. As a result, my income dropped by over $60,000 a year, and I became extremely isolated and overwhelmed. I never dreamed I would have even more issues while seeking a suitable day program for her. I toured approximately seven programs in Indianapolis, Fishers, Castleton, and Cumberland. There were two programs that I really liked. One of the programs said they had a waiting list but could not or would not give me the number of people on the waiting list nor where she would be on that list. They did an intake evaluation, but I never heard back from them, despite routinely calling for updates. The second program, thankfully, accepted her. They said she would do well with one assistant, which she has, so her day program has been a total success. But my husband and I still struggled
to find a full-time residential placement for her. My daughter’s story is not unique. Every disabled individual has different requirements, and it is not asking too much to want these requirements to be met. For example, while seeking day programs for her, I asked about the use of restraints, as my daughter is so self-injurious that she will sometimes bang her head to the point of concussion if she isn’t physically restrained. The places I spoke to did not offer restraint options. However, I am a nurse and well-trained. Her behavior support plan supersedes any company’s policies and procedures, so a behavior support plan that calls for restraint would have to be followed. To me, it’s a red flag when I get shut down just for asking questions and informing a provider about my child’s needs. This unwillingness to provide care or to follow someone’s care plan is evidence of a healthcare crisis that is compounded by staffing shortages. The inability to maintain staff to care for the very vulnerable sub-group of individuals with high behaviors (self-injury, aggression, outbursts, meltdowns, impulsivity, and many others) makes the waiver essentially useless in many cases. I believe it would be so very simple for Indiana’s Bureau of Developmental Disabilities Services (BDDS) to require that providers serve a certain percentage of individuals with high behavioral issues and/or high medical needs. BDDS sets forth a whole list of requirements for companies applying to be waiver service providers, so there is no reason that reliability should not be a requirement. Additionally, I strongly feel there
