Column from March 15, 2003
Disabilities and Dollars
Copyright 2003 by Laura Hershey
You can't put a price tag on civil rights.
I believe that with every strand of my experience and every fiber of my heart. The Black civil rights movement and the Women's Liberation Movement didn't back down when politicians and business owners claimed that justice would come at too high a social or economic cost -- and the disability-rights movement shouldn't back down either.
We must insist on access, independence and community supports as basic civil and human rights. We must vehemently oppose policies which deprive disabled people of their liberty and confine them to nursing homes, state homes, and other institutions.
We must also reject arguments which demean us by implying that we are drains on the economy. Such was the implication of a letter I received a few weeks ago from Denver Mayor Wellington Webb. I had written to Mayor Webb, objecting to his Administration's decision to sign onto an amicus brief supporting Sacramento, California's anti-ADA position. Sacramento wants the U.S. Supreme Court to declare that cities do not have to make streets and sidewalks accessible under Title II of the Americans with Disabilities Act. Requiring cities to install curb ramps and other access features, Mayor Webb wrote, "would present an impossible financial burden to American cities." Click here to read the correspondence between Mayor Webb and me.
The Mayor is wrong. The ADA does not involve "extensive litigation as to whether every sidewalk in America must be made immediately accessible," as he fears. Instead, it urges city governments to work with citizens, including those with disabilities, to develop reasonable budgets, plans, and priorities for removing barriers in public streets and sidewalks. By planning ahead five or ten years, cities should be able to make significant improvements in accessibility, thus allowing disabled citizens freedom of mobility.
Public works dollars for sidewalk curb ramps. Medicaid funding for in-home attendant programs. Employer-provided workplace accommodations. Prescription drug coverage for people with chronic illnesses. These things are not charity handouts which a benevolent society offers its less fortunate members. They are investments in justice.
Justice, not profit, must be the bottom line. In this world, justice too often gets whatever's left over after privileged interests have been served. Budget-cutting politicians invoke the mantras of "fiscal responsibility" and "taxpayers' rights" to justify inaction in access improvements, or drastic reductions in the health and social programs that support independent living. We, the people, must organize to demand and defend accessibility and independent living programs. Cost concerns should not hamper progress toward equality.
On the other hand, that doesn't mean that we shouldn't think about money -- how it's spent, by whom, for whom; and how it might be spent more wisely and fairly.
Disability-rights advocates want full funding for services to support health, independence and community participation. We don't want those vital funds lost to fraud and waste. A common stereotype of disabled (and poor) people sees us as leeches and malingerers, stealing from the system. In truth, most fraud and waste isn't committed by recipients, but by unscrupulous vendors, and by careless public service who fail to investigate examples of unwise, wasteful spending.
Mark Simon, a consumer advocate here in Colorado, has documented several glaring examples of wasteful policies and practices within the state's Medicaid program. These included:
*Rigid rules and unreasonable interpretations which result in higher than necessary expenditures. For example, in decisions involving reimbursement for medical transportation, Medicaid staff will approve $200 for taxi fare, but will not pay even $10 for parking if the client gets a ride from a friend or relative.
*Approval decisions made -- or delayed -- without regard for long-term consequences. Simon cites the example of a wheelchair user needing a seat cushion: The individual may have to wait for approval of this relatively cheap purchase for several weeks, or even longer -- during which time pressure sores may develop, often requiring extensive surgery and hospitalization.
*Forcing lengthy and unnecessary appeals rather than resolving issues informally at lower levels. In his document Simon reports what many program beneficiaries already know -- that "the State regularly misuses the denial/hearing process. Disputes are frequently caused because staff does not know the rules. They make decisions that are wrong... [then] fight tooth and nail to prove that they are right... rather than working cooperatively to resolve a problem."
Simon presented this document to Medicaid officials, who dismissed his conclusions and money-saving suggestions. Frustrated with their indifference, especially during a time of fiscal austerity, Simon has now sent his report to the Colorado State Legislature's Joint Budget Committee. Click here to read Simon's entire report for yourself.
Strangely enough, while politicians are crowing about the need for "sacrifice" and "fiscal conservativism," they are also making irrational spending decisions which hurt both disabled people and taxpayers. (And remember, disabled people are taxpayers too!)
The most glaring example of this irrationality -- glaring to disability advocates, though apparently unnoticed by policymakers and mainstream media -- is the government's ever-increasing generosity toward nursing homes, which become more inhumane and inefficient every year. Consider this: The Centers for Medicare & Medicaid Services has recently released a 200-page report entitled "Nursing Home Data Compendium 2000." That report documented fully 25 to 30 percent of nursing homes did actual harm or posed immediate jeopardy to residents during the past five years. During these same five years, Medicaid nursing homes funds increased by 38 percent. Nursing home owners continually plead for more funds from the federal government -- and politicians, terrified of the specter of patient abuse, and unable to imagine a non-institutional alternative, keep giving more. Meanwhile, disabled and older people who want to live independently must fight for money for in-home support services. Attorney and advocate Steve Gold says, "Putting any more money into these institutions is useless and a waste.... these institutions cannot be fixed up."
So why do the guardians of the public coffers continue to dump dollars down the drain of institutionalization, while pinching pennies in the areas of accessibility, independent living, and community support services? Largely, for the same reason that they deregulate and/or subsidize the oil, logging, communications, and other big industries: They are beholden to powerful corporate interests who finance their campaigns. The public good cannot compete with high-powered lobbying and beltway bribery.
"In terms of personal autonomy and freedom of movement, nursing home residents are political prisoners," Attorney and advocate Harriet McBryde Johnson writes. "They are where they are because of political decisions."
Medicaid and Medicare together pay for 60 percent of all nursing home costs in the U.S. Most states still devote between 70 percent and 90 percent of their Medicaid long-term care dollars to pay for nursing homes and other institutions, rather than paying for services to help people live independently in their own homes. (1)
In order to understand these irrational economic decisions -- spending supposedly scarce tax dollars on programs that waste resources and hurt people, while de-funding programs which equalize disabled people's access and opportunities -- we have to peer more closely at the relationship between disabilities and dollars.
It is no accident that people with significant disabilities are ostensibly the "recipients" of these expensive and spirit-crushing programs and, at the same time, are most affected by discrimination, physical barriers and inadequate personal assistance. These are the means by which disabled people are actively, systematically excluded from labor participation.
Why? Wouldn't it make more sense to get more disabled people working, to tap our productivity and tax our incomes?
Yes, it would make sense for people with disabilities, and for society as a whole. But again, there are private interests which need disabled people to stay poor and disempowered. Think about the people who depend on disabled people's dependency. If we ever achieve true equality, disabled people won't need or want nursing home owners and managers; certain social workers; or many of the bureaucrats staffing our nation's benefit systems. We may still need medical equipment vendors and other specialized service providers -- some people will even still use home health agencies -- but we will be tough, demanding customers with political and economic power. Clearly, these "stakeholders" have a vested interest in the continuing poverty and powerlessness of disabled people.
To put it another way, by some calculations we are worth more out of the workforce than in it.
Those calculations, however, represent a distorted set of social values, equally destructive to disabled people's lives and to the broader community. It's another reason why the disability-rights movement is crucial to our country's future health and well-being; and why everyone should join this movement.
Bob Williams and Henry Claypool, "Bush's New Freedom for State Medicaid Programs Would Not Free People with Disabilities," February 05, 2003. Published by AIMMM -- Advancing Independence: Modernizing Medicare and Medicaid www.AIMMM.org.