- Many states are defunding or closing intensive, disability-specific settings in favor of community-based treatment.
- A recent news story featured an autistic Pennsylvania boy stranded in a hospital for months due to the lack of appropriate services.
- There needs to be a continuum of care that meets the diverse needs of individuals with cognitive impairments.
The logic that drives much contemporary policy for the intellectually and developmentally disabled continues to baffle me. I’ve written before about one persistent refrain in these debates – I don’t want X, so no one should have X – but now I’d like to address a different assumption that, at the risk of dating myself, I’m going to call the “Reverse Field of Dreams Fallacy”: If we don’t build it, they won’t come.
I’m seeing this more and more recently. Many disability advocates argue that we should completely get rid of – and you can fill in the blank here, guardianship/special ed classrooms/sheltered workshops/Intermediate Care Facilities and all larger residential settings – based on the assertion that nobody really needs such intensive supports. Instead, these advocates offer the vision of even the most profoundly intellectually and developmentally disabled children flourishing in inclusive classrooms and adults thriving in their apartments, holding competitive, minimum-wage jobs, and exercising their autonomy with a little guidance from friends or family members through supported decision making.
It’s a lovely vision – I completely understand why so many policymakers are listening. Who doesn’t wish that for everyone? If only wishing made it so.
Emmett’s Story Featured in The Philadelphia Inquirer
However, the truth is that intensive, disability-specific supports exist because they are desperately needed – particularly by those with the dangerous behaviors that are often associated with severe autism.
Last week, The Philadelphia Inquirer featured a story about 12-year-old Emmett Tolis, a severely autistic boy who has been languishing at the world-renowned Children’s Hospital of Philadelphia (CHOP) since July because of aggressive behaviors that are not only too unsafe to manage at home, but, ironically, preclude his acceptance by providers who, with limited resources and huge waiting lists to draw from, are heavily incentivized to choose the easiest clients.
The lack of appropriate services for Emmett is no accident. Still, it is the completely foreseeable consequence of policies issued by the Office of Developmental Programs (ODP) in Pennsylvania, where I also live. ODP has fought hard (and is still fighting) to close our state developmental centers, sheltered workshops, and virtually all intensive, disability-specific settings. The agency “is now phasing out ‘Day Habilitation Programs’ and replacing them with Community Participation Supports,” regardless of whether it is safe for participants with aggression and self-injury to spend most or all of their days in public spaces, or whether such unstructured, over-stimulating environments might even exacerbate those behaviors.
Housing regulations similarly mandate that new residential settings be “integrated and dispersed in the community in noncontiguous locations” and “may not exceed a program capacity of four,” even if larger settings might better support the diverse staffing needs (including, potentially, direct support professionals, behavior specialists, occupational therapists, nurses, etc.) of the most severely impaired.
Keep in mind these limits are not mandated by the Centers for Medicare and Medicaid Services (CMS), which has explicitly called for an individualized and outcome-oriented approach to service provision.
But states are permitted to be more restrictive than required by the federal government; ODP is exercising that right; and families like the Tolis’ are left with no option besides trying to manage extraordinarily dangerous behavior at home – which is what they will be doing going forward, as CHOP decided to discharge Emmett with no explanation and no plan.
Suppose you’re skeptical about how violent an autistic child can be. In that case, the Inquirer article also included the heartbreaking story of Zoe Potack, an eleven-year-old whose self-injurious behavior is so intense that she has permanently blinded herself.
Importantly, these are not isolated cases. Last month, a consortium of organizations, including the National Council on Severe Autism (of which I’m a board member) and the Autism Science Foundation, released a short video with the express purpose of showing those who have never experienced it what extremely aggressive and self-injurious behavior in autistic kids and young adults look like. I think it should be required viewing for everyone involved in crafting policy for this population.
Need for a Continuum of Care
This is not just a Pennsylvania problem. In 2017, Kaiser Health News reported that an increasing number of autistic youths were “spending weeks or even months in emergency rooms and acute-care hospitals, sometimes sedated, restrained to mesh-tented beds” because of a lack of appropriate services. Between 2009 and 2014, the number of autistic individuals seen in hospital ERs almost doubled, reaching nearly 160,000, with the most prolonged stays clocking in at nearly a year.
It’s also not just an autism problem. As has been well documented, the closure of psychiatric hospitals and the exclusive focus on community-based mental health care has resulted in a phenomenon known as psychiatric “boarding,” where patients with severe mental illness are forced to wait for days in ERs because of a lack of inpatient beds. More broadly, deinstitutionalization has resulted in dramatically increased rates of homelessness and incarceration.
It seems simple and obvious: we will always need a continuum of care that includes short and long-term acute, specialized treatment for the most cognitively impaired. Because whether or not we build it, they will come – the Emmetts and the Zoes, with their catastrophic impairments and their complex and urgent needs. Recognizing and planning for this is neither ableist nor discriminatory – but what is decidedly both those things is standing silent in the face of such profound suffering.