HEALTH CARE/Joan Retsinas

Disabled People Get Institutionalized

Charles Dickens’ emotional roller coaster is underway: we’ve cried over Tiny Tim, cheered Scrooge’s spirit-driven generosity, and, at the end, sighed with relief that Tiny Tim will live.

In Dickens’ 19th century London, a disability, coupled with poverty, marked a death sentence. Befitting the season of hope, Dickens offered hope that warm hearts, coupled with loose purse strings, would save all the Tiny Tims. Even as we deplore Scrooge, let’s visit disability in this era. People still have disabilities. Science, medicine, technology – the wonders of modernity — haven’t made all of us whole and hearty. The diagnoses have shifted. In 19th century London, when few children matriculated beyond a few years, learning disorders and autism didn’t exist as medical diagnoses. Physicians didn’t recognize genetic syndromes, like Hurler or Noonan. Nor did 19th century Londoners classify anybody with an “intellectual disability.” But a disability, whatever the definition, signals a barrier to the individual’s full participation in the life of the country.

So the crucial question remains as salient today as in Dickens’ time: How well do we – wealthier, more knowledgeable, more philanthropic than Scrooge et al. – care for those who need the most care?

The National Council on Disability, an independent federal agency, has issued an annual report to the President and Congress. This report gives a statistical answer. (http://www.ncd.gov/progress_reports)

Too many people with disabilities live in institutions. We don’t shove people into the workhouses and poor farms of Dickens’ London. Were Scrooge to fire Tiny Tim’s father, the Cratchits would head to a workhouse. But 14% of today’s nursing population are ages 31 to 64, up from 10% a decade ago. The reason is not cost: a year of home and community-based care for a person with an intellectual disability costs $44,000, compared to $137,000 for a year in a nursing home. The reason lies in the ossified rules of Medicaid. Medicaid must fund nursing home care; home and community-based care is optional. Over the years regulators and legislators have tweaked Medicaid with waivers, allowing, for instance, families to care for disabled children at home. But the general modus operandi of Medicaid has been institutional. Today, when states face reduced revenues (in part because a crucial Medicaid spigot in the American Recovery and Reinvestment Act has ended), states are cutting home care by reducing the number of hours available to a client, or cutting reimbursement. After all, that spending is “optional.” Those cutbacks trap people in institutions.

On the health care front, we have treatments that Dickens’ countrymen didn’t imagine. Yet for full access, you need insurance. Private insurers have used pre-existing exclusionary clauses, as well as arbitrary caps on lifetime payments, to render insurance almost moot.

The good news: the newly-passed health reform act (for better or worse, dubbed Obamacare) ruled that insurers cannot deny coverage to newborns based solely on disability, as of 2014. Furthermore, the act outlawed both the pre-existing condition exclusionary clauses and the caps, again, as of 2014. The bad news: 2014 is an election away, and a slew of conservative candidates vow to nix the law. People with disabilities live in dire straits. Indeed, 43% of the homeless adults in shelters have some disability. One reason is the low level of income-subsidies: The National Council notes the gap between monthly Social Security Disability subsidies and rent in most cities. Furthermore, the Social Security rules discourage employment. Beneficiaries have a choice: a Social Security stipend plus health insurance, or a job – a job that probably won’t pay enough for health insurance. In the demeaning workhouses of 19th century London, residents were expected to work. Today the pendulum has swung: we almost bar work, even though work, including part-time work, would integrate people more fully into this nation, while raising them above poverty.

Each season we Americans deplore the greediness and hard-heartedness of Scrooge; but, honestly, we could do better than we do.

Joan Retsinas is a sociologist who writes about health care in Providence, R.I. Email retsinas@verizon.net.

From The Progressive Populist, December 15, 2011