Like the old and the young, the disabled are generally thought of as inherently deserving of public assistance. Those who are blind, deaf or crippled, unlike those who are the parents of illegitimate children or addicted to alcohol or other drugs, are not despised for bringing their problems on themselves, even in Red States. Reasonably thoughtful people take a “there but the grace of God go I” attitude toward the needs and conditions of those suffering a disability. Most people, if forced to think about it, are willing to pay taxes to assist those with the added burden of caring for a disabled spouse, child, or parent. In 1998 4.3 percent of all public spending was on services and benefits specifically for those with special needs – for the disabled. Most of these have eligibility restricted based on means, as well as needs. A disabled individual with enough income to provide for their own care would not be eligible; a disabled individual living with a spouse or parents who are not poor also may not be ineligible. There are few single disabled adults who are not reliant on public benefits, however, because those born with severe congenital disabilities such as mental retardation, mental illness, blindness or deafness are unlikely to earn much money during the course of their lives, and are likely to require extensive assistance, particularly health care. But deciding who is in need is not always straightforward, and this leads to below the radar conflict and non-decisions.
In reality, public spending on those with special needs accounts for more than the 4.3 percent that is readily identified. Virtually every general public service, from education to transportation, has special facilities or programs for the disabled, at additional cost. For example, in 2000 it cost the New York City Transit Authority $1.25 in operating expenses to provide a subway ride, and $1.61 to provide a bus ride. It cost $27.24 to provide a demand-response ride for the disabled. It cost the New York City Board of Education $8,944 to educate each general education student, compared with $18,400 for each special education student and $42,600 for each severely disabled special education student. Services and benefits with eligibility based on disability, like services and benefits with eligibility based on age, are scattered across virtually the entire range of government activity.
Thus far, despite rising costs, the disabled as people have yet to face a backlash and hostility like that experienced by poor single parents. There is, however, a backlash brewing against the rising cost of providing services to the disabled, based on the suspicion that many of those receiving benefits are not actually entitled them. There is plenty to suspect. The share of the population that qualifies as disabled varies greatly from place to place, and has been rising everywhere as benefits directed to those with special needs have become more generous. Everyone sees people who appear quite spry parking in the handicapped spaces at the local supermarket. It is easy to imagine such people claiming various public benefits as well.
Special needs eligibility criteria are, if anything, easier to game and more difficult to administer than means-testing criteria. Income and wealth may be easy to hide, means-testing formulas may be complicated, and the interaction between various means tested benefits may be complex, but at least money is a specific quantitative measure. Disability is often less objective, particularly on the margin, and it is the marginal categories that show the greatest growth. Everyone can see that a person has no legs or arms. Blindness is difficult to feign. But there is a longstanding and increasing dispute about the number of people eligible for cash benefits based on mental impairment, special education benefits based on learning disabilities, and worker compensation based on back injuries. These are conditions that no one doubts exists, but that cannot be objectively observed in all but the most severe cases.
As a result, public programs are often accused, often good reason, of denying services to those truly in need, of allowing widespread fraud and manipulation, or of doing both at the same time. Both service and benefit recipients, and program administrators and caseworkers, are frequently whipsawed between efforts to deny benefits to all but the most clearly disabled to save money, and efforts to provide services to all but the most clear-cut frauds to ensure that no one in need is denied. Given the subjective nature of services based on need, this is almost inevitable.
The “mental impairment” category, for example, is the most controversial disability used to qualify people for SSI, the income support program for the disabled. Many conservatives have claimed that while those who are “mentally impaired” may be unemployable, this is the result of bad personal choices – alcohol, drugs, a chaotic upbringing – not a health condition. In the early 1980s, the Reagan Administration threw more than half a million people off SSI, many of whom suffered severe deprivation and were found to be in need. After the 1996 welfare reform, in contrast, the number of SSI recipients soared, as cities and states responded to the financial incentives of block grants to find that thousands of former welfare recipients were, in fact, disabled.
The same quandary, the difficulty of administering subjective eligibility criteria based on disability, can be observed in the debate over “special education” for disabled children. Prior to 1975 most students with severe disabilities were excluded from public school. Since then, based on a series of federal laws, a rising share of children have been mandated to receive special education at public expense, including not only those who would have been excluded but also those who would have been placed in regular classrooms.
Many of the latter children had failed to learn in the past as a result of hearing impediments, speech impediments, dyslexia and similar conditions – those that nonetheless did learn have become effective advocates for future children with their disabilities. Since the early 1980s (by which time most severely disabled children were provided with services), children with “leaning disabilities” and “behavioral problems” have accounted for much of the growth in special education. Learning disabilities, speech impediments, and emotional disturbance now account for around four of out of five of those in special education, according to the U.S Department of Education. Severe conditions like deafness, blindness, “orthopedic impairment,” autism and mental retardation, conditions that are easier to identify objectively, now account for a small share of special education students.
Conservative critics claim that poor cities like the New York City spend too much on special education, and continually call for crackdowns and “reform.” Cultural bias, they claim, may play a role in subjective determinations of disability, since minorities account for a disproportionate share of special education students. Nationally they account for a disproportionate share of those diagnosed as mentally retarded, in New York City a disproportionate share of those considered emotionally disturbed. Even conservative critics, however, acknowledge that the share of children in special education is actually higher in affluent suburbs than in financially strapped cities. The share of New York City’s public school children in special education, while high compared to other financially-strapped cities, is not high compared with the national average. It is, and has been, well below the average for New York State, despite the fact that New York City accounts for a very high share of the state’s poor and immigrant children. If poverty leads to special education placements due to a “chaotic upbringing,” inadequate nutrition and health care, or “cultural biases,” one would have expected the share of the city’s children in special education to be far above average, not below.
Worker compensation is another battleground over subjective determinations of need. Under worker compensation laws, employees have lost the right to sue their employers for injuries on the job. The debate over “excessive” lawsuits and jury awards does not apply to them. Instead, state worker compensation boards determine whether or not injuries are disabling, with compensation according to a fixed schedule relative to wages. In some states, employers are required to purchase private insurance to pay worker compensation claims; in other states, they are required to pay into state-run funds. Payments by the state-run funds alone accounted for 0.4 of all public spending in 1998, almost as much as unemployment insurance payments (0.6 percent).
The cost of worker compensation claims is paid by business, either through higher insurance premiums, higher state worker compensation taxes, or lower profits on worker compensation policies. With the program organized at the state level, businesses now claim that comparative worker compensation costs, benefits, and interpretations of eligibility for assistance, are an important criteria for the creation and retention of jobs. States are rated as to their effectiveness in keeping these costs down. Not surprisingly, the conflict is over whether to award benefits in marginal cases that are difficult to document objectively, such as back injuries. Their subjective nature make it more likely that those who cannot work will be denied benefits by insurance companies seeking to improve their profits, or public agencies seeking to respond to the concerns of job-providing businesses. They also make it more likely that less than honest citizens will use workers compensation as an alternative source of income. Indeed, worker compensation claims rise in recessions, when other sources of income are not available.
Services and benefits with eligibility based on special needs (disability) present, once again, a public policy dilemma. If public agencies are too liberal in their evaluation of those who file claims, they risk turning those programs and benefits into expensive gold mines for the undeserving. If they are too suspicious they risk denying services benefits to the truly needy, thus causing severe deprivation. And once again, as in the case of means-testing, the response is hypocrisy. “Conservatives” may be increasingly outraged by the number of adults seeking income in lieu of work under SSI based on claims of “mental impairment,” worker compensation based on claims back injury, and children receiving special education services based on claims of learning disability or behavioral problems. Yet there has been virtually no objection to the cost of assistance to the disabled elderly. And this cost is far larger, and is set to explode.
I once received a copy of a report by a disabled rights advocacy group, which included a percentage of the population with a disability. I found the group’s percentage to be absurdly high – around 20 percent. In every prior case in which I had received a report from any advocacy group (on any cause and with any political point of view), and in which there was reasonably objective data available against which to check its claims, I had found the information produced by advocates in such reports to be misleading at best, and simply made up at worst. But in this case, when I checked U.S. Census Bureau data – the Bureau’s surveys often ask people if they have disabilities – I found the advocacy group had in fact used the Bureau’s numbers in its report. I had been thinking only of the share of people who are disabled from birth, or who become disabled due to illness or injury in youth or middle age. I hadn’t accounted for the disability that awaits many, if not most of us, in old age.
According to the Census Bureau 12.0 percent of persons age 22 to 44 had a disability, and 1.7 percent required personal assistance with one or more “activities of daily living” (ADL) – getting in and out of a bed or chair, taking a bath or shower, dressing, eating, using the toilet – or “instrumental activities of daily living” (IADL) — going outside the home, keeping track of money and bills, preparing meals, doing light housework, and using the telephone. On the other hand, 46 percent of persons age 65 to 79, and 73 percent of persons age 80 and over, reported a disability, and 11 percent of persons age 65 to 79, and 33 percent of persons age 80 and over, reported needing personal assistance with an ADL or IADL. The provision of such personal assistance can be far more costly than providing a modest living to those with a work disability, or additional school resources to those with a learning disability. And the number of persons age 80 and over, and their share of the population, will increase rapidly over the next 30 years. The only question is how many of these people will be determined to qualify for assistance based on their disability, and who will be required to pay to provide that assistance.
The care of the disabled, frail elderly is a combination of three issues. The first is the proper border between the obligations of family and the obligations of society, and as such it is the subject of a separate discussion in and of itself. In 2000, only 11.6 percent of all elderly people with disabilities had care provided by paid help, rather than family members or friends, although most people with advancing disabilities eventually require institutional care at some point before death. The financial implications of the difference between a long period of family care followed by a short stay in a nursing home or hospice, compared with a long period of government provided services at home followed by a stay in a nursing home, are enormous, both for the family and the community.
The second issue is whether the elderly and their children, or the community, should be required to pay for any required paid help. Most personal and health care for the disabled elderly is paid for by Medicaid, a means-tested benefit, and as discussed earlier Medicaid is subject to “planning” by those savvy about accessing public benefits.
The third issue, the one relevant to this discussion, is the difficulty of determining disability on the margin. Obviously, disability is a continuum, with an elderly person at first finding it inconvenient, then tiring and burdensome, then difficult, then almost impossible, and then completely impossible to do some or all activities of daily living without help. The more determined hold out to the end, the less determined seek care almost at the beginning. Yet either someone else is paid to cook for, clean for, handles finances for, feed, bathe, and transport such an elderly person, or is not.
To know if such assistance were truly “medically necessary,” one would have to be present inside a person’s home, observing him or her in the conduct various activities, preferably surreptitiously to avoid having a show put on. In fact, one would also have to be present inside an applicant’s brain, measuring the way a person felt on the inside while doing those activities. As with the back pain of persons seeking worker compensation, the mental impairment of persons seeking SSI, and the learning disability or behavioral problems of children seeking special education, it is therefore nearly impossible for public officials to apply the same objective standard to everyone. Not surprisingly, the share of elderly people receiving assistance under Medicaid varies enormously from state to state.
In 1997, at the height of the anti-welfare crusade, New York State accounted for 8.4 percent of the nation’s poor people and 7.5 percent of its “frail elderly” (age 85 and over), a significant excess burden compared with its 6.7 percent of the nation’s population. Not surprisingly, New York accounted for 9.0 percent of total Medicaid recipients, and 8.3 percent of Medicaid recipients in nursing homes. A nursing home is not a place one would choose to go unless one is truly in need, so it not surprising that New York’s share of the nation’s Medicaid nursing home population was only slightly higher than one would expect, based on its share of the nation’s very old people. New York State, however, accounted for 23 percent of persons receiving Medicaid-financed home health care, a service intended to keep the elderly out of nursing homes. It accounted for 33 percent of Medicaid home health care spending, and nearly half of all Medicaid financed “personal care” spending.
Here in New York State, politicians, pundits and the media always describe the elderly as deserving more and better services. Much of the high Medicaid spending on the disabled elderly takes place in New York City, a place where spending on elementary and secondary education has been below the national average, as a share of the income of city residents, year after year. In 1990, 70 percent of New Yorkers age 65 or over were non-Hispanic Whites, while 70 percent of New Yorkers age 18 or under were not.
Among those White elderly persons, for many years before she died, was my wife’s grandmother, who lived in a senior citizen’s development here in Brooklyn. She volunteered to deliver meals on wheels to the homebound elderly in her building. That benefit is not means tested, but is simply provided to elderly people based on an assertion of incapacity provided by social service agencies that receive funds to prepare and deliver the meals. My wife’s grandmother was outraged to find herself delivering meals to people who she knew to have fewer infirmaries, and less difficulty preparing meals, than she did. She was also upset at reading about service reductions for children (this was during the budget crisis of the early 1990s recession), given what she knew about her neighbors.
Why did she struggle on, almost to the last, on her own while others felt entitled to assistance? Most of the reason was a difference in moral values; she was a very committed Catholic who lived what she believed. But I think that part of it was the nearby presence of her grandchildren and great grandchildren. The children, grandchildren, and great grandchildren of her neighbors lived in the suburbs, or in the Sunbelt, as a result of the vast middle-class exodus from older cities like Brooklyn in the 1950s and 1960s. They had left their parents behind to be cared for by the City of New York, at others’ expense, as they sought lower taxes and better schools elsewhere. My wife’s grandmother, on the other hand, thought of her own great granddaughters, toddlers who came to visit her every month, when the Daily News reported that the city was taking sand out of the sand boxes to save money. The moral and practical problems, given mass mobility, of charging part of the cost of caring for the old and disabled to those who live near them is obvious.
The point is that disability can be as subjective for the elderly as it is for others. Government agencies either “roll over” and hand out benefits to anyone with half a case, as New York does for the elderly, or limit benefits to those they can’t get around paying, providing assistance only to those with the savvy, resources, information and sense of entitlement to work the system.
With all this controversy or (in the case of the elderly) potential controversy about people either illegitimately receiving public benefits or cruelly being denied public benefits in marginal cases, can we at least be assured that those clearly and indisputably in need are being taken care of?
Not necessarily.
Those with the clearest needs are also those with the greatest expenses. Caught between the political demand for lower taxes, and the political demand for broader eligibility, one political response is to reduce the public benefits for the worst off and most vulnerable, particularly those who are incapacitated and do not have savvy family members or advocates fighting for every dollar of assistance. The result, here in New York State and perhaps elsewhere, has been a series of scandals. In the late 1960s and early 1970s, a time when the elderly were less politically powerful than today, there were nursing home scandals. Old people were found to be suffering in conditions of severe neglect in profitable, publicly-funded nursing homes. In the early 1970s there was the Willowbrook scandal. A home and school for the most severely retarded children in New York State was found to be overcrowded, and to have children chained to their beds and lying in their own excrement. And in 2002 there was a new scandal, after the New York Times investigated 26 large nursing homes caring for severely mentally ill adults with Medicaid funding. These were patients who, in prior decades would have been warehoused in large state hospitals, hospitals that were themselves the subject of scandals in prior years. Of 5,000 residents of those homes, the Times found, nearly 1,000 had died in just six years, many at ages younger than 50, some in their 20s.