“True advocates … must awaken to the coming tide, if the most needy on the autism spectrum are to thrive and survive.”
The following public comment was submitted to the Interagency Autism Coordinating Committee in advance of its July 21-22, 2021 meeting. It is public record and reprinted here:
Stephen Wallace, J.D. and Debra Wallace
Red Rock, Texas
Father/Co-guardian of [name redacted], Austin State Supported Living Center ICF Advocates for Choice
Parents and Allies of Remarkable Texans
IACC Workshop- Keeping the Olmstead Promise
My name is Stephen Wallace, and I am first and foremost the father and co-guardian of a forty year old son with severe autism. As I thank you for the opportunity to address this committee, I want to note that while I have been a father dealing with autism for nearly four decades, I have actually been confronting the issue of autism for at least a decade longer. I volunteered and later continued to work as a teacher and daily living trainer for autistic children in the late 60s and early 70s. In a cosmic case of irony, in 1980, our son [name redacted] was born. By 1983, he had received multiple diagnoses and confirmations as having a pervasive developmental disorder with autistic tendencies.
Our son, the fourth of five children, remained home and a vital part of our family for the first 18 years of his life. But as the years progressed, he became more aggressive and self injurious. We fought for inclusive programs with behavioral interventions at school, and even obtained the highly sought after and coveted in-home waiver service, which provided the latest and best services available. By 1998, all of the providers the state could offer refused to work with our son, and his school had long given up being able to deal with the increase in his aggression. After multiple near death experiences and almost regularly scheduled visits to the emergency room, we realized we had no other option than to place him in a highly structured residential facility with 24 hour a day protection and supervision.
The day we placed [name redacted] remains the darkest day of our lives to date, but that previously unthinkable option was the only one left that offered the hope of keeping him alive.
When the time came, we had to fight to achieve the very thing we had most feared. The movement toward community placement had already begun in earnest, and congregate care was already seen as an outdated concept.
“Those on the severe end of the spectrum who demonstrate aggressive or self injurious tendencies continue to grow in numbers.... The simple fact is, thousands upon thousands of families will shortly be confronted by the need for more intensive care and treatment for their loved ones with autism. ”
Many of those who parent, protect, or love someone with autism will unfortunately face that same dilemma that confronted our family. Those on the severe end of the spectrum who demonstrate aggressive or self injurious tendencies continue to grow in numbers which exceed effective service provision available in the home or community. The simple fact is, thousands upon thousands of families will shortly be confronted by the need for more intensive care and treatment for their loved ones with autism. Growth in effective residential services has been stymied by a lack of resources, and compounded by the growth and acceptance of a mythical notion known widely as the “Olmstead Mandate”. The myth grows from a 1999 Supreme Court decision rendered in Olmstead v. L.C. (527 U.S. 581), which held that unjustified segregation for persons with disabilities is a violation of the Americans with Disabilities Act, but stated the ruling was conditioned upon three factors which must be considered in each case; the treatment team responsible for the care of that individual agreed that appropriate services could be offered in a less restrictive environment, that the individual receiving services did not object to being relocated to a less restrictive environment, and that the state could offer those same services in a less restrictive setting without undue hardship. The very conditional and specific holding has, over the last 22 years, been transformed by community advocates, and agencies on the federal and state level, into a mythical tool to indiscriminately close needed residential facilities, or at least demonize their very existence.
The narrative created and enhanced by this myth is now leading to, for many of us who rely on the intensive care offered by congregate facilities, a dystopian future where our loved ones have no refuge. Currently, thousands of individuals exist in our communities, languishing with unmet needs and protections, isolated in plain sight of a society that has little understanding or tolerance of the needs of the profoundly or severely afflicted. Even more will follow as increasing numbers age out of the education system and are thrown into the void of non-existent services for adults with autism.
“Currently, thousands of individuals exist in our communities, languishing with unmet needs and protections.... Even more will follow as increasing numbers age out of the education system and are thrown into the void of non-existent services for adults with autism.”
It is time that the dangerous narrative of independence or bust be revealed for what it is; a notion fitting some, but leaving so many more without even the most basic services to keep them out of harms way. A realistic but compassionate view of the difficult futures faced by those with severe autism, must be adhered to, and it must contain the realization that some of our numbers will never develop the skills or capacity to protect themselves from abuse, exploitation, hunger, neglect or death. If not, then the current trend of community for all will result in an abandonment of our obligation to care for those who cannot care for themselves and end with the most profoundly impacted individuals being lost as collateral damage to the movement. True advocates for all of the disabled, and agency officials who create and administrate must awaken to the coming tide, if the most needy on the autism spectrum are to thrive and survive. Now is the time for those who can mold the future to realize that more intensive services such as ICF congregate care facilities are not only still relevant , but will be even more essential in the future. The myth of the Olmstead Mandate must be counteracted by an intelligent and responsible provision of services for a population which will not cease to be just because we deny their existence.