Dickens’ ‘Christmas Carol’ still instructs on how to care

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.” 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: federal health care reform rules 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: an election and the resolution of a Supreme Court challenge to the law may overturn the law.
People with disabilities live in dire straits. Indeed, 43 percent 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.
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. &#8226


Joan Retsinas is the managing editor of Medicine & Health/Rhode Island, a monthly journal of the Rhode Island Medical Society.

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