No community provider was equipped to serve our grandson. ICFs (intermediate care facilities) are like ICUs of the I/DD world, providing a centralized level of care unavailable in the fragmented community system.
The author and her husband with their grandson, Aidan.
By Joan Kelley
Twenty six years ago, our beautiful two-year-old grandson had come to live with us as a bright-eyed, engaging, talkative toddler. Within six months he began to exhibit odd behaviors, extreme sleep issues and lost ability to use his three and four-word sentences. Little did we know that a diagnosis of autism awaited us, or what that would mean.
Among other things, it has meant a Herculean struggle to find appropriate services for Aidan. In addition to the stress at home — sleepless nights, extreme behavioral issues, including daily clean-up of feces smears in various places through the house — we faced ongoing resistance from the schools and the social services agencies. It started in preschool when the special ed director decided they were not about to “spend money they didn’t have” on this intensely challenging child. Special education then limited provision of much needed behavior services, training and oversight necessary for a child with extreme needs.
After the Kansas Winfield State Hospital closed its doors, money was released for Medicaid HCBS, or Home and Community Based Services. We were excited about our move back to Kansas when told by community providers that funds and services were available to help support our grandson. Instead, he was put on an HCBS waiting list, unable to access services. We were never informed what “happened to all the waiver money” that was supposedly available after the Winfield closure.
After applying pressure on state agencies and community providers, we accessed waiver services, only to find that significant restrictions prevented implementing a successful program. For example, overlapping of staff was forbidden under the waiver. HCBS would not cover critical staff meetings, necessary to develop solutions for decreasing pervasive, maladaptive behaviors. Nor could we pay more than $8.00 per hour for direct staff under the waiver.
Due to the self-injurious, aggressive, eloping, and other behaviors, direct support staff did not stay around long. We found ourselves continually recruiting, interviewing, and training new staff along with constant 24-7 “surveillance” of our grandson, making sure he did not escape out the door in the middle of the night. We were also exhausted and in crisis.
We found a unique solution during this time. In June of 2000 we became licensed, therapeutic foster parents, accessing a funding stream which paid a per diem, providing the flexibility to pay an incentive wage to direct support staff and hire professionals for support, oversight, staff training, and team meetings.
Many skills were gained over the next few years, until our grandson began the journey through puberty. In order to keep him and others safe on community outings, we had to maintain a 2 to 1 staff ratio. We were grateful we could do this, but when our precious young man became so strong and aggressive that I became afraid of him, our days with him at home were numbered.
At age 14, he was placed in what is now known as a Psychiatric Residential Treatment Facility (PRTF). Staff there were nice, but inadequately trained to handle the most challenging individuals they endeavored to serve. At that time our grandson began to lose skills, as the school there seemed ill-equipped to follow through with the intense behavioral program he enjoyed previously.
The PRTF also experienced staff oversight challenges; at one point we had to hot-line in suspected abuse. Shortly after that, the PRTF suddenly decided that Aidan was “stable”, and it was time to discharge him.
Everyone we approached in the community indicated they were not equipped to provide the intense levels of care necessary for Aidan’s success and safety, as well as the safety of support staff. That’s when we pursued an evaluation and medication wash at the Kansas Neurological Institute (KNI).
The state required us to thoroughly document that we had exhausted every community resource and option, which we did, but his doctor was extremely reluctant to sign on for his admission to KNI. After a year of struggles, prayers and convincing, he was admitted to KNI on a temporary basis.
The staff at KNI were wonderful. They were able to not only safely reduce the years-long, toxic mix of medications from five down to one, but KNI had already incorporated the Person Centered Care Model for several years. They developed a program for Aidan which included frequent community outings, exercise, grocery shopping, part time supported employment, etc. while addressing extreme behaviors.
After stabilization, we looked forward to re-integrating Aidan back into a community setting closer to home. As we looked at possible community options, we visited a number of single and duplex group homes. To our surprise, some were so poorly maintained that I would not have wanted to see a pet dog to live in some of these conditions. While this was disturbing enough, we were also shocked when numerous community providers refused to serve him.
Our grandson has lived on a campus of homes at the Kansas Neurological Institute for ten years; this facility has been a godsend, and has served him well. Aidan’s condition is also lifelong. As with many fragile developmentally disabled individuals affected with most complex conditions, he needs a level of care that is difficult to find, maintain, and oversee in a fragmented community system. The centralized care model is recognized as a needed alternative for some individuals in our Supreme Court’s Olmstead ruling, yet this important aspect of care is being dismantled by zealous advocates, most of whom have never lifted a finger to care for such profoundly disabled individuals.
I believe in community, and I also believe, as most rational-thinking people do, that Intensive Care Units in hospitals across the nation are a critical part of our health care system. Intermediate Care Facilities (ICFs) such as KNI are the Intensive Care Units for our DD loved ones. We should no sooner get rid of ICUs than we should ICFs. We need the full continuum of care.
Shall we devalue the lives of the weakest among us by continuing to close down the only providers capable of serving them? My husband and I say a resounding no! — joining with thousands of families across the nation who know firsthand what it takes to care for our most fragile citizens.
Joan Kelley is the grandmother of a young man with a severe form of autism. She serves as the Kansas State Coordinator for VOR.