Broken System-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 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 should be streamlined training for all direct support staff. BDDS is currently working diligently to streamline all case management so that consumers receive the same type of support. Why would they not do the same thing for direct support staff?

When I spoke to BDDS as well as providers to get their input and to add their perspectives to this story, I wanted to know why they do not track, monitor, or ensure access to providers. Unfortunately, their responses left more questions than answers. One would believe BDDS would be able to easily access the percentage of individuals with waiver services who cannot utilize their funding, yet this is not the case. They confirmed to me that they do not have the ability with their current technology to run a report to see who has a Community Integration and Habilitation (CIH) waiver and what percentage of those recipients are not able to utilize their benefits. I was flabbergasted. They did confirm that they are working towards improving their computer technology so that they can do these things and streamline the care for those individuals in the future, but they attribute the lack of services to lack of staffing.

I scoff at that because I strongly feel it is more a lack of accountability than anything else. There are no requirements to serve this population in general. Each provider is a private institution with its own “rights” to pick and choose whom they serve. Many providers have chosen not to serve individuals with high behaviors or medical issues, and there are currently no requirements for providers to do so in order to remain certified.

BDDS “hopes” to streamline care by condensing case management and utilizing case management services to make sure that everyone is on the same page regarding expectations of services rendered. And that is a positive change! But until BDDS changes the certification process to require service for the individuals with the greatest need, there will be no true change for this population. The cherry-picking of individuals with low to no behaviors and fewer medical needs will continue with no repercussions.

I would like you to ask yourself this question: If leaving high-needs individuals with their families to incorporate them into society was successful, wouldn’t you expect to encounter individuals with high behaviors or high medical needs when you’re out in public? Most likely, you’ve hardly ever seen any. Where do you think those people are? They’re sitting at home behind closed doors under the watchful eyes of their family, or if they are lucky enough, with their caregiver. They can’t go out into society because they don’t have staffing or the appropriate behavior management because they can’t find a provider to take their case. I have spoken with multiple families, and their stories are so sadly similar.

My daughter is a whole person, deserving of the same love, care, and attention as anyone else. Although autistic, she absolutely loves people and approaches new people by asking what their birthday is. I take her out into the community every single day, and I manage her behaviors even though they are sometimes intense and severe. I refuse to be one of those families trapped at home, afraid and feeling unable to be a part of the community. I pick and choose what I do with her so that it is the least stressful for us but also rewarding for her. Many families cannot do this. Many families find it absolutely unmanageable to leave the home. I highlighted a few of their stories here: CH has two sons on the autism spectrum, who live with CH and her husband. The younger son has high behaviors, and the older son has no behaviors. Over the years, they struggled to find care for their sons, especially their high behavior son. When the waiver kicked in, they were thrilled, thinking that things would be better. They found a waiver provider for their sons. Unfortunately, shortly after attaining the provider, they were unable to get any staff to serve her son with high behaviors; however, her son with no behaviors had all of the services he needed.

This infuriated CH because her younger son definitely needed services yet couldn’t get them. CH terminated services with that company and became direct support staff for her children. This posed its own issues, namely isolation and exhaustion. CH mentioned how she and her husband have not been able to go out for a date or to any family gatherings together because one must stay back and care for the high behavior son. This is certainly isolating for both her son and the family.

Another mom, CG, has a son with bipolar disorder and autism. He has occasional aggressive outbursts towards others. He also displays self-injurious behaviors. Two of his behaviorists have quit. One felt he could not handle him, and the other quit because her company thought he was “too dangerous.” One provider would only see the son if one of the parents was present. CG had high hopes for a Participant Assistance and Care (PAC) provider who shared culinary interests with her son, but the provider was only available on Sundays. On the day before the Super Bowl, he didn’t return any texts. Then, the morning of Super Bowl Sunday, he texted that he was called into work at his primary job, and since they were offering more hours, he was quitting on the spot. He left the family with no warning, leaving them heartbroken and without a PAC provider. This was devastating for their son. His family was left to pick up the pieces alone. CG reports that they have applied for the CIH waiver and have been denied.

These families, and so many others, should not have to live this way. As a mother, a nurse, and a special-needs advocate, I implore you to reach out to your state representatives, congressmen, governor, and BDDS to demand better care for our most vulnerable population.

You may reach out to me directly at Tammynurse4u@gmail.com.

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