In the midst of violence that seems targeted at our civic life and a pandemic imposing “social distancing,” I find myself thinking a lot about community.
As I have previously reflected, “community integration” is a legal phrase about the ADA’s requirement to provide services to people with disabilities in small, community-based settings rather than in segregated institutions like nursing homes and psychiatric hospitals. Yet it can also refer to the idea of a community of support.
A lot of our communities still look down on disability or mental health as weakness and stigma, and we know that if we show ours, we can lose a lot—dates, credibility, social capital, jobs, kids.
Leah Lakshmi Piepzna-Samarasinha
Leah Lakshmi Piepzna-Samarasinha describes “care webs”—people getting together to support each other and create collective access. In an article here, she introduces the concept that care can involve friendship and joy, as opposed to being shameful need for professional services. Her book, Care Work: Dreaming Disability Justice includes a thoughtful discussion of a number of disability-led care work projects—not always perfect, but better than isolation.
Allowing People to Choose Community in Service Providers
To be clear, Piepzna-Samarasinha does not suggest that we can dispense with good, government-funded care available to people with disabilities. An example of a program designed to allow people with disabilities to build their own support networks is New York’s Consumer Directed Personal Assistance Program (CDPAP). It provides Medicaid payments for the caregivers that people with disabilities choose—at least in theory. As a recent report explains, pennywise and pound-foolish budgets have shortchanged this program, making it hard for people with disabilities to find and retain helpers—so they end up in much more expensive situations like hospitals and nursing homes.
This type of diversion of funding from the community to institutions is exactly what the Supreme Court held to be illegal disability discrimination more than 20 years ago, in Olmstead v. LC.[1] Yet sometimes I hear Olmstead interpreted as though it is simply a ban on institutions, rather than a requirement to provide the choice to receive services in a community setting.
We All Need Help Sometimes
As lawyers, we need to keep in mind that independence does not mean isolation. All of us need help sometimes. Let’s build a society where getting and giving help when we need it is the norm, not the exception.
[1] 527 US 581 (1999).
ADA Update 