Left behind: health services and people with severe disabilities.

03Original abstract

The recent scandal about the quality of care for returning members of the military with disabilities from the Iraq War—focused around Walter Reed Hospital in Washington, DC—was a partial confirmation about the decline in the quality of care for people with disabilities. With this scandal covered widely by the media, health care has become a highly ranked issue on the disability national agenda. There are pressing systemic problems faced by health service providers attempting to continue to meet the health needs of a population with daunting rehabilitation and habilitation issues. As the historical medical model for caring for people with disabilities fades into the past, there appears to be reduced advocacy for access to quality health care that can make a difference in the lives of people with disabilities.Among the adult population with disabilities, there is dramatic connection between the severity of disability and low economic attainment. A recent release of the results of the Survey of Income and Program Participation (SIPP), a U.S. Census Bureau project, contains an examination of households that, in 2002, found that 51.2 million people (18.1% of the population) had some degree of disability and 32.5 million (11.5% of the population) had a severe disability. That low income correlated with the presence of severe disability produced the shocking result that, among people with a severe disability, 76.6% had annual personal incomes below $20,000. More than a quarter of those people with a severe disability lived in poverty. This finding is consistent with the fact that 57.5% of those surveyed with a severe disability were unemployed year-round (Steinmetz, 2006).It is clear that continual monitoring of the health care delivery system, as well as other ways of improving access to employment, is required if the disparities found in this study are to be narrowed. The Institute of Medicine's 2007 report, The Future of Disability in America, advocated ways to improve the data collection related to disability. This report did not address income disparities, but contained some of the findings that have already been reported in the scientific literature.Beyond poverty, why does disability continue to correlate with social class? When adults in the United States are compared, the relationship between poverty and poor health has been long recognized. However, functional impairments across class lines have only recently been examined. Using data drawn from the U.S. Census 2000 Supplementary Survey, Minkler, Fuller-Thomson, and Guralnik (2006) reported a decline in the frequency of disability when they compared people with middle-class and upper class incomes:Returning to the SIPP, I found that there was a dramatic difference regarding perceived health status when people in the sample were compared according to the presence or absence of a disability and where disability was further differentiated into not severe and severe.In summary, there is a sharp discrepancy between the top one-tenth of 1% of the population with disabilities and the rest. In fact, because a substantial part of the population with severe disabilities are poor, they are at risk of falling into a more dire situation in the near future, as federal deficit and state concerns about Medicaid expenditures make access to services more difficult than in the past. There is a potential for these service reductions to quality to generate unintended consequences. Not only does an underperforming economy, as it relates to stagnant wages for the least paid, put more people on Medicaid, but proposed cuts that are aimed at the most expensive users of Medicaid-funded services, namely people with disabilities or serious chronic illnesses, may lead to increased service requirements in the future.Most of the people with disabilities who are eligible for Medicaid are not living in institutions. Certainly, today, few children with disabilities live in institutions. Institutions are expensive and there are creative substitutions for them. People living in institutions can be redirected to community care, thereby generating cost offsets. According to the Medicaid Statistical Information System (MSIS), in 2001, “3.6 percent of Medicaid enrollees with annual spending exceeding $25,000 accounted for nearly half (48.8%) of all Medicaid spending” (Sommers & Cohen, 2006, p. 4). Institutionalized enrollees, although constituting only 3.4% of the Medicaid population, accounted for 31.6% of expenditures (p. 5). Last, “high-cost disabled enrollees with institutional care accounted for a quarter of all spending for the disabled” (p. 8). What might be useful for understanding the conditions under which some people with serious disabilities are able to overcome these barriers to employment and self-defined good or excellent health is to do what can be called deviant case analysis, or in this example, review the factors associated with employment and good health among the minority who were seriously disabled reporting on their situations. Those who bucked the trends in this population are more interesting than those who did not. The “deviants” may supply clues as to what works and what needs to be put in place to increase the rate of success. Evidence that certain kinds of health care interventions are effective needs to be supported by financing. Medicaid is often called the gold standard by professionals in the field of disability when it comes to making services and prosthetics available to people with severe disabilities, because when states endorse optional Medicaid benefits, services exceed what is available under private insurance. Although there is wide variation from state to state as to what is covered, there is a general recognition that rehabilitation interventions are required, even when costly. However, incrementally building up access to these services, equipment, and supplies gets noticed by state officials. As noted, eligible people with disabilities are often the most frequent and expensive users of Medicaid. Consequently, efforts to create and sustain supports for people with severe disabilities are often undermined by budgetary constraints.It is not only people with disabilities who are impacted by budget constraints. States can restrain spending by lowering income eligibility cut offs, reducing coverage of optional benefits, or refusing to raise the rates for procedures so that payouts to physicians are limited. When payments are low, doctors—even those who are participants in Medicaid managed care plans—will limit the number of Medicaid patients they will see or refuse to add new patients to their rosters. Wall Street Journal reporter Vanessa Fuhrmans found that national trends toward low payment limit access for Medicaid patients, particularly when it comes to the availability of specialists (Fuhrmans, 2007). Her article, “Locked Out—Note to Medicaid Patients: The Doctor Won't See You Now; As Program Cuts Fees, MDS Drop Out; Hurdle for Expansion of Care,” suggested that many states pay so poorly that they cannot guarantee the availability of medical care, as required by the original Medicaid legislation.Cost cutting via payment limits makes it difficult to support adults with serious disabilities in their quest to stay in the workforce. Even in workable state Medicaid systems, where payments have been adequate to attract providers and vendors, Medicaid budget offices made efforts, before the revenue shortfall produced by an economic downturn, to cap spending on durable medical equipment (DME) or supplies for children and adolescents. This policy is a form of rationing and may also be in violation of the federal Medicaid legislation. The New York State Department of Health has rationed equipment by the introduction of numerous rules to slow down the process of acquisition and thereby control expenditures. In addition, new proposals at state and federal levels seek to further restrict reimbursement for therapies, especially when there is no sign of improvement from treatment. Maintenance of current functioning is not considered an acceptable therapeutic goal. If this form of reasoning—that improvement is the only positive outcome—is applied to the other efforts at maintenance of functioning, then many middle-aged people seeking to put off acute cases of diabetes by systematically measuring their blood sugar would be ineligible for services. Saving money by limiting Medicaid payments for DME has its unintended consequences and disadvantages on other sectors of the public safety net. When equipment is not maintained, the cost of municipal services goes up. In one example, an adult could not get to the elevator in his building to get to the street because the mechanized wheelchair he used was not working and in need of repair. A call to 911 sent emergency medical assistance as well as police officers. Of course, some of the cost of this help was paid for by Medicaid, a price well in excess of the proposed repair. Police services come out of a different budget. In the end, the taxpayer pays in other ways.Self-advocates and family members have sparked a New York State Assembly investigation of the Department of Health's handling of Medicaid DME claims. Conducted during the summer of 2006, the authors of the Assembly's report asserted that the Department had been “systematically depriving poor people with severe disabilities—many of them children—of wheelchairs and other ‘durable medical equipment’ they need to reduce their pain, preserve their health, and enable them to live more productive lives (New York State Assembly, 2006, p. 4). The authors then said that the savings generated by the Department of Health were short term and resulted in long-term increased costs while failing to comply with state law.The gold standard is being tarnished by federal efforts to make Medicaid more like commercial insurance. This situation represents a policy retreat from the 40-year-old social contract that generated Medicaid. I am particularly concerned about recent supposed federal reforms of Medicaid that put greater restraints on service utilization by people who need to maintain access to care. Copays reduce use of necessary services, including medications, as well as unnecessary services. A low-income person with epilepsy who stops taking antiseizure medication to avoid copays may also invite a seizure and a fall, and, as a result, may be hospitalized with various fractures. This is hardly a constructive way to cut costs. It is a way to fill costly hospital beds.In addition, slowing down the replacement or maintenance process is hardly going to improve the independence and community adaptation of wheelchair users or those who require leg braces. Access to functioning DME is a medical necessity. This situation exists in a state that, based on the report of the 2004 New York State Citizen's Budget Commission, spends three times the national average for personal care services.We cannot reverse these incremental trends toward deterioration without a new social contract. This commitment was expressed best by Lewis G. Sandy, who, writing in the New England Journal of Medicine (2002), said that

Intellectual and developmental disabilities, 2009 · doi:10.1352/2009.47:47-49