Gracie - Received the Supports and Placement She Needed

Gracie is a caring and bright young woman with Rett Syndrome, a rare but severe neurological and developmental disorder that has left her entirely dependent on others for her care. Gracie’s situation became dire after she was removed from her mother’s home by the Department of Child Services (DCS) and made a ward of the State. Gracie’s grandparents quickly obtained guardianship. However, due to significant accessibility limitations in their rural nineteenth-century farmhouse, Gracie was placed with her elderly great-grandparents.

Soon after obtaining guardianship, Gracie’s grandmother applied for the Community Integration and Habilitation (CIH) Waiver on Gracie’s behalf. The CIH Waiver, administered by the Bureau of Developmental Disabilities Services (BDDS), is typically reserved for individuals with extraordinary health and/or safety concerns, and provides heightened services compared to the more generally available Family Supports Waiver. Gracie was ultimately approved for the CIH Waiver, but this was only the beginning of her case.

When approving a minor for the CIH Waiver, BDDS assumes the child will receive services in the family home. Gracie’s family knew this was an unsustainable long-term arrangement – her great-grandparents did not have the physical capacity to permanently care for her in their home, even with additional supports; and the grandparents’ home could not be made accessible without extensive and cost-prohibitive modifications. However, Gracie’s grandparents learned that a couple from their church, a special education teacher at a local school, and his wife, were providers for Structured Family Caregiving (SFC), a service available under the CIH Waiver whereby consumers receive 24-hour care in the home of their caregiver(s). Not only did the family live five minutes from Gracie’s grandparents, but their home was also fully wheelchair-accessible and already contained all of the medical equipment required for Gracie’s care. Moreover, the family owned a wheelchair-accessible van and had two children close to Gracie’s age. Thankfully, there was a vacancy in the home, and the family was willing and happy to take Gracie on as a client. It appeared to be the perfect solution to a complex problem.

County-level BDDS officials, however, claimed SFC was available only to adults and that BDDS did not fund any placements for minors outside of the family home. According to the officials, if Gracie could not be cared for in the home of a family member, she would have to be served by DCS, which ultimately meant placement in a nursing facility. The only placement identified by DCS was located in Logansport, an approximate four hour drive from Gracie’s family.

During this time, Gracie’s grandmother learned about Indiana Disability Rights (IDR) and our work from local advocacy partners. She called IDR and spoke with Dan Ward, Intake Coordinator, multiple times throughout the process. When Gracie was ultimately denied placement in the SFC home, Gracie’s grandmother called IDR again.  Justin Schrock, Staff Attorney took on Gracie’s case.  Justin helped Gracie’s grandmother file an appeal and began negotiating with state-level BDDS officials in an effort to get the requested SFC placement approved. After months of negotiations, ultimately, the request for placement was denied. IDR then filed an administrative appeal on Gracie’s behalf.

Thankfully, the months of negotiation with BDDS helped to provide an extensive record that strongly suggested SFC placement was the best option, despite state-agency concerns. BDDS officials agreed to a trial SFC placement for Gracie the day before the hearing was set to occur. Eight months later, the placement is in the final stages of becoming finalized.

Gracie’s grandparents are delighted that Gracie is practically next door and they can stop by anytime they want to visit. Gracie’s grandmother still takes her to her medical appointments and spends lots of “grandma” time with Gracie.  As for the SFC family, Gracie’s grandmother says, “they truly just love her” and the family shared that the arrangement has worked out even better than expected. Gracie is happy, healthy, and receiving the supports she needs to safely remain in the community she knows, surrounded by people that care for her.