Realities In The Field




“My grandson will never go to an institution!” I declared as well meaning friends who saw firsthand the exhaustion and daily challenges my husband and I were experiencing with our toddler-age, severely autistic grandson. Suggestions of the unthinkable recourse of institutional placement brought visions of a Willowbrook environment, common in the 70’s, to our minds.

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. We remarked that he “seemed to be in his own little world” but little did we know that a diagnosis of autism awaited us, or what that would mean.

In the early 1990’s, community-based services were being praised as the solution for everyone in need of disability services. “Our boy” was accepted into Head Start preschool program at age three, but paraeducators found it difficult to help our grandson “fit in” without him disturbing or destroying other children activities. No one, including us, understood the “why” of his behaviors, but research showed great promise with behavioral therapy programs for children with autism.

The school however, was not interested in these therapies, and decided it was adequate to simply provide one hour per week of speech and occupational therapy. They were not about to “spend money they didn’t have” on this intensely challenging child. 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 were now faced with opposition from the school system, and their narrow interpretation of the Individuals with Disabilities Education Act. (IDEA)

We paid out of pocket to have a PHD level Behavioral Specialist come from Denver to assist us. The local Director of Special Education Services was at first embarrassed, then began the war on limiting provisions of much needed training and oversight, necessary for a child with extreme needs.

After several years of diligent advocacy, we decided against suggestions to sue the school district, and in April 1998, planned our move back to the Midwest, where a certain school district had an excellent autism program. Someone had already sued this particular school district, setting a precedent, and families like ours flocked there to get the help our children so desperately needed.

That same year, the Winfield State Hospital had closed its doors, releasing money for community services. We were excited when told by Community Service Providers that funds and services were available for our grandchild. When we arrived just four months later in August, however, our grandson was already on the HCBS waiting list. We were never informed what “happened to all the waiver money” in four months period of time.

After applying pressure on the state agencies and community providers, we accessed waiver services, only to find out that significant restrictions prevented implementing a successful program for our grandson. 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 Aidan’s self-injurious, aggressive, eloping, and other maladaptive 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 seemed inadequately trained to handle the most challenging individuals they endeavored to serve. At that time Aidan 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.

That’s when we pursued an evaluation and medication wash at the Kansas Neurological Institute (KNI). Everyone we approached in the community indicated they were not equipped to provide this level of care.

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 KNI staff 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 several 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 KNI for almost nine years; it has been a god-send to us. Aidan’s condition is also lifelong. As with many fragile DD 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 in our Supreme Court’s Olmstead ruling, yet this important aspect of care is being dismantled by community-for all advocates, most of whom have never lifted a finger to care for such profoundly affected 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) are the Intensive Care Units for our DD loved ones.

Shall we devalue the lives of the weakest among us by continuing to close down such facilities? My husband and I say a resounding no! – joining with thousands of families across the nation, who know first hand what it takes to care for our most fragile citizens. These DD individuals with extreme needs are worthy of our love, care, and the life-long advocacy work we do on their behalf.•

Joan Kelley is VOR’s Kansas State Coordinator.



VOr’s mission is to advocate for high quality care and human rights for all people with intellectual and  developmental disabilities (i/dd).

VOR promises to empower individuals with developmental disabilities to make and protect quality of life choices.

Founded in 1983, VOR is a national 501(c)(3) organization governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support. Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. VOR supports the expansion of quality community-based service options; VOR opposes the elimination of specialized facility-based (institutional) option.

VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and desires of the family and guardians.