Over the past several years, there has been a fundamental shift in the disability rights movement toward increased self-advocacy: the idea that people with disabilities must be at the table, rather than have others make decisions on their behalf. This shift in perception also heralds a significant change in public policy beyond acceptance and toward true self-determination. Autism Awareness month celebrates, among other things, “presuming competence”, “real jobs for real pay”, and “autistic rights as human rights”.
Developed in the 1950’s and 60’s, our current system of public supports that now increasingly allows citizens with disabilities to live in their communities is an antiquated patchwork of funding streams and programs that actually prohibits beneficiaries from working and saving. Supplemental Security Income (SSI) is the gateway to this system; Medicaid is the delivery vehicle; this program was never designed to support impoverished elderly people with dementia, poor single mothers, children with Autism, and adults with developmental disabilities all in one program.
Once a young adult turns 21, he or she exits the youth system and is encouraged to apply for SSI—a means-tested program with income and asset limits–which will force him or her into poverty for the rest of his or her life. This person cannot have assets totaling more than $2,000 over a lifetime. In the current system, he’ll need Medicaid in order to be insured medically but he’ll also need it to get housing, job coaching, and aides to help him live independently.
More importantly, the system does not serve those who rely on it for their very survival. It does not serve families who want their children to live a life like those of others without disabilities. In part, this is because there are thousands of providers making millions of dollars on the backs of the disabled by paying them subminimum wage and segregating them in sheltered workshops. We literally have a class of people who are denied the opportunity to work and save. Isn’t that what being an American is all about? There ARE answers and solutions.
Most parents hope and assume that their children will go on to work, save, and live their lives as they see fit. So imagine having a child who will need some sort of government assistance (perhaps even a substantial amount) for the rest of his life. Should that person be prevented from earning and saving as well? The Social Security Administration—applying current policies–thinks so. But this doesn’t make any sense.
The government spends approximately $357 billion dollars per year on services for citizens with disabilities. About 41% of it goes to income maintenance (welfare cash payments), 55% goes to healthcare, 3% to housing food assistance and only 1% goes to education, employment and training (http://content.healthaffairs.org/content/30/9/1664.abstract). What if those percentages could be altered so that there would be substantially less of a need for income supports?
The vast majority of people with disabilities receiving supports from their state and federal governments would love to work. Employment is what gives people independence, dignity, self-sufficiency. Families fear having their adult children with disabilities work; they live in fear of their child losing benefits, which would mean no health insurance, no one to assist them activities of daily living, laundry, paying bills. For those families living in abject poverty, a disabled family member’s SSI income is often the sole means for supporting the family. Hardly enough to survive, monthly SSI payments are only $668 per month or $8,376 annually. The federal poverty level is $10,890 for a single person. So we’ve forced these already vulnerable citizens into poverty; their only other option is institutionalization.
I am the Executive Director of a coalition of 18 national disability groups—the Collaboration to Promote Self Determination (CPSD)–whose focus is the modernization of this antiquated system of public supports that serves neither families nor its beneficiaries. Our current system promotes the segregation of citizens with disabilities and codifies discrimination against this population. A key partner of our collaboration is the Autistic Self-Advocacy Network, whose motto is “Nothing About Us Without Us”. Run by and for Autistic people, ASAN’s mission is to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism.
A new social contract is possible. CPSD, along with ASAN, believes that the dismal employment statistics for people with disabilities can be reversed. Through legislative action, Congress could enable young people with significant disabilities to benefit from more rigorous preparation for employment and paid work experience in special education so that they don’t become employed at sub- minimum wage after leaving school. Congress could place an Employment First presumption in law to ensure that public resources are marshaled to place individuals with disabilities in jobs and maintain them in these jobs. A tax-exempt savings account could be created in law so that individuals with disabilities and their families could save for the health, education, housing and other expenses they will have in a lifetime.
Please join with us in this struggle for equality. Resolve to add your voice to the groundswell of voices demanding modernization to the existing outdated system of government supports and services for adults with disabilities while ensuring that a strong social safety net is maintained.
Resolve to be part of creating a system that results in work, savings and independent living and autonomy. Because autistic rights are human rights. And autism acceptance is about centering the voices of autistic people in the conversation about autistic people.