PrintOctober 30, 2010
Scrooge
Perhaps Dickens' Scrooge said it best,
"Let them die, and thus decrease the surplus population!"
In these days of economic turmoil, governments at all levels are feeling the squeeze between diminishing revenues and increasing demand for services from the populations they serve. Spreading the wealth around is what government does best, to the point of morphing the appropriations process into a gigantic job-fair for rent-seeking constituencies. The abiding problem comes when revenues aren't flowing like milk and honey. Budgets tighten. In some cases entire programs are scrapped in order to meet statutory spending caps. Repeatedly, one constituency shoulders the burden to a greater extent than all others. They are the disabled.
Whenever a round of cuts is anticipated, the long knives come out amongst the myriad consumers of taxpayer largesse. Administrators are loath to consider staff reductions within their departments. Politicians jealously guard the pork they secure on behalf of major donors and other supporting constituencies. Every agency of government swears it will be rendered ineffective if it is shorted a single penny from the previous years' appropriation. Taxpayers are not fooled by this nonsense, but find themselves voiceless in the face of hyper-funded lobbying efforts on behalf of the corporate/union/government leviathan that gorges at the budget table.
Inevitably, some combination of cuts and "revenue enhancements" occurs, and the whole mess lurches forward into another fiscal year. According to the Center on Budget and Policy Priorities, 46 of 50 states have cut services to vulnerable populations in the past fiscal year. Twenty-nine of those states have specifically targeted services to the profoundly disabled. The profoundly disabled are members of a subset of American society who are entirely incapable of self-care. Their disabilities range from genetic disorders to catastrophic injury. Some are physically capable, but developmentally deficient -- all sharing one common characteristic: without assistance they will suffer, and likely die.
Balancing budgets on the backs of the vulnerable is a remarkably consistent strategy of both political parties. Mississippi has greatly slashed aid to the disabled, yet Senate Appropriations Committee Ranking Member, Senator Thad Cochrane (R-Miss) has earmarked funds for 27 separate projects (none involving the disabled) totaling nearly $30 million dollars this year alone. In Illinois, Senator Dick Durbin and Rep Jesse Jackson Jr. have teamed up to funnel $175,000 to an urban horticulture project administered by the Chicago Botanical Garden, which also happens to already have more than $120 million in the bank, according to IRS form 990 filings.
Gulf states have all reduced aid (either eliminating or dramatically scaling back outlays for home assistance that allow the disabled to avoid institutionalization) yet have spent $75 million over the last 25 years studying the mating habits of shrimp. I realize the data gleaned from such research is helpful in states that produce large amounts of shrimp annually. I just don't believe it should be funded by the state when the direct beneficiary is the profitable shrimp industry itself.
Medicaid rules declare institutional care a mandatory funding item, and home-based care as optional, despite the clear disparity in relative costs. Federal mandates prohibit the states from cutting outlays in many areas, and appear to protect the disabled. The truth however, is that Federal guidelines treat different settings for care differently -- states must provide institutional care, but are not required to provide the less costly, and more effective home-based services. With their hands tied, states fund what they must, and cut what they will.
So who pays? In the end, it is those least able to afford it -- the disabled. In state after state, essential services for the physically and developmentally disabled are eliminated or scaled back to such an extent that many are forced to give up independent living and enter a state facility, where the care is not just frightfully more expensive, it is often lethally substandard. Many of these developmentally disabled also suffer from physical disabilities that render them unable to work or provide for themselves. Many rely on familial caregivers, who take on the responsibility out of love and decency, while also providing the state with great savings, as it is one sixth as expensive to fund home-based services over institutional care in state facilities or group homes.
Make no mistake, even with generous state-funded assistance, every facet of human activity is affected for both the caregiver and their charge. Truly, your life is not your own, in much the same way as it is for a new parent for those first months following a birth. You must perform all the same functions as you would for a newborn (plus a great many more, depending on the extent of the disability) only on a much larger scale. Changing a newborn's diaper when you are out to eat with your family is one thing; changing the diaper of a young adult is quite another. Errands must be coordinated around feedings and medication times. Life is lived in installments, in the short spaces of time between medical necessities and physical limitations. Frequently, the logistics involved in just leaving the house become so burdensome that many caregivers begin to lead shut in lives. This is not healthy for them, or the person they tend.
I speak with first-hand knowledge. My grandson has a genetic disorder that has robbed him of his eyesight, the ability to walk or talk or even eat. He is fed through a gastrostomy tube, or G-tube for short. The specific nature of his disability is not important; it is enough to know that in the absence of 24-hour care, he would perish. We, his family, provide that care. It is a challenging responsibility that requires an extraordinary level of commitment, while exacting a fierce price from the caregiver. Many caregivers would also tell you it is the greatest joy of their lives to meet that challenge. Though terribly afflicted, the profoundly disabled exhibit such a sense of purity and divine sweetness, one could be forgiven for believing they are God's counter-balance to all the evils of humanity.
The profoundly disabled are without question the most vulnerable of all citizens. If there is one point on which nearly all Americans could agree, would it not be the primacy of the needs of profoundly disabled children and adults over pork-project spending designed to grease the wheels of re-election machinery? This past week, the state of Indiana eliminated food aid for the developmentally disabled. For many of them, no longer receiving that assistance will mean the end of their independence
With the advent of ObamaCare, and the consequent swelling of Medicaid rolls, resources will be squeezed as never before. Talk to your representatives, let them know you stand on the side of decency and demand the proper funding of services for those that cannot ask for themselves. The profoundly disabled are being pushed aside by more vocal and vigorous constituencies. Stand up for them. Without an impassioned cry from the voting public, the disabled will be burdened further, in many cases beyond what they are able to bear.
The author writes from Omaha, NE and can be reached at readmorejoe@gmail.com
