Imagine a nurse coming to your house and asking whether your disabled child is “limited.” Answer “yes” and you confirm the worst stereotypes about people with disabilities. Answer “no” and the state kicks your child off of Medicaid. Disabled people and those who love them face these decisions all the time: Instead of celebrating independence, we have to constantly prove vulnerability and lack.
Earlier this month, CNN reporters Elizabeth Cohen and Katherine Grise exposed a nasty secret in Florida, where parents of disabled children were being asked by nurses from the Department of Education whether their children were “limited.” Those parents who asserted their child’s potential and independence by answering “no” soon discovered the grim truth: The state of Florida was using the questionnaire as a secret test to locate disabled children whom they could kick off the most effective Medicaid program. The “non-limited” kids, many of whom in fact had complex medical needs, were shunted onto a program without robust medical support.
According to Cohen and Grise, that second program funneled money to companies owned by major GOP donors. When the Florida Department of Health asked the parents about limits, those parents were never informed about how much depended on the answer.
I take a dim view of political corruption that strips away needed health-care benefits from disabled kids. Florida voters and officials must hold the corrupt accountable. Beyond my fury, though, I was struck by the familiarity of these encounters with the state. When my son was about 18 months old, our service coordinator came over to our house and sat down at the dining room table to go over reports about his progress. We’d been working hard with a diverse group of therapists for over a year to help him develop. Our son (he’s now 10) has Down syndrome, and all the best research told us that a robust program of early intervention would help him walk, talk, develop fine motor control, and otherwise thrive. The therapists were skilled professionals and wonderful people, helping us learn about our son and staying positive about how well he was doing. Then we read the report. It cited deficit after deficit, comparing my son unfavorably to “typical” children in nearly every category. We cried when the service coordinator left.
It’s a good thing, though, that we didn’t fight against these negative words. Had we argued that we needed to help him grow into the best version for himself rather than compare him to some arbitrary standards of normal and refused to sign off on the negative document, the state might have been able to strip away services. What we didn’t understand at the time is that, in order to receive state support, people with disabilities need to be assessed and found lacking. Our therapists weren’t cruel; they were trying to protect our son in a cruel system.
For decades, the disability rights community, led by self advocates and joined by so many others, has been trying to reframe the way we understand disability. Disability is a natural part of the human condition, a fundamental feature of our diversity, and deficits often emerge from social choices (i.e. not putting in ramps) rather than inherent faults. We’re trying hard to fight stigma, but every time we encounter a government form, we have to re-stigmatize ourselves, our loved ones, our students, our clients.
It’s no mystery how these systems emerged. Resources are finite, so the government has developed elaborate systems of classification to determine who is truly needy. Participating in these systems requires stripping a human down to their perceived failings and determining which needs are “special.”
Such systems are not, however, the only way to organize services and supports. After the Florida story broke, I reached Julia Bascom, executive director of the Autistic Self Advocacy Network, via instant messenger. Bascom says that plenty of these problems emerge from structural issues in society. Government, in general, is “unwilling to invest in our citizens or provide a basic safety net,” which pushes us toward a system of “deficit-driven assessments.” Still, Bascom proposes that we reframe our questions when asking about supports. Instead of pondering limitations or lacks, we might ask, “What does the person want? What are they good at? What do they need support with? How should that support be delivered?” Bascom points me to the concept of “person-centered planning,” an approach that—in theory—develops disability support (usually for adults) focused on defining goals and figuring out how to achieve them, rather than by assessing perceived faults.
I can only imagine what a person-centered or other positive approach might have been like for us in those earlier years. We should never have had to justify services by listening to others denigrate our son. The tears around my dining room table were, in the long scheme of things, a minor setback on our road to understanding him and learning to advocate for him effectively. Still, I remember the sting. It shapes how I enter every meeting since, always on my guard.
The corruption in Florida, meanwhile, is much more serious. The specific alleged conduct is vile and potentially life-threatening. Anyone involved should be fired, sued, voted out of office, or prosecuted to the extent the law allows. That none of these things will likely happen points both to the routine acceptance of harms done to disabled children and to the specific collapse of decency in Florida’s state government. Still, it’s a system that forces us to emphasize faults that makes such corruption possible.
All humans have needs. A scarcity model based on support only for those with “special” needs is not the only way to organize society. Demanding proof of deficits demeans people with disabilities and opens the door to corruption and abuse.
