Charles Dickens’ emotional roller coaster is a powerful seasonal talisman: 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. 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 – have not made all of us hale and hearty.
In 19th-century London, learning disorders and autism didn’t exist as medical diagnoses. Physicians didn’t recognize genetic syndromes. 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 society.
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.
Too many people with disabilities live in institutions, says the report. Fourteen percent of today’s nursing home population ranges from age 31 to 64, up from 10 percent 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 with $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. After all, home care is “optional.”