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Title:The National Disability Policy: A Progress Report, December 2001 - December 2002- Long term care and Supports
Author: National Council on Disability, http://www.ncd.gov/ (KACW 9/19/03)
Kathy’s Note: The National Council on Disability’s progress report is a 125 page document, covering a variety of issues, such a Civil Rights, Education, Health Care, Long-Term Services and Supports, Youth, Employment, Welfare Reform, Housing, Assistive Technology and Telecommunications, Transportation, and International Issues and Homeland Security. After much thought, I have decided to prepare a report on the broad issues and prepare a report on each of the above issues
Introduction:In a 2002 study, the CBO determined that for FY 2000 the Federal Government spent $615 billion on persons over the age of 65 and $148 billion on children. As the ratio of current workers to retirees falls, the costs of caring for both the growing population of senior citizens and persons with disabilities under the age of 65 will continue to grow rapidly. Demographics alone, including the projected doubling between 1980 and 2030 of the number of Americans over 65, makes this inevitable. The expense of supporting these people in their own homes and communities will be far less than the cost of housing and caring for them in nursing homes or other institutions. Part of the needed funds must come from diversion and redirection of the estimated 73 percent of federal long-term care funds currently targeted to institutional care. However, even if the enormous attitudinal, legal and economic changes necessary for this diversion of funds happens, such reallocation of existing resources will not meet the need without an increase. But the primary reason living in an institution is not rooted in economics; few people would choose institutional care over their own homes and neighborhoods, if allowed to make that choice with dignity, autonomy and comfort. A February 2002 HHS study revealed that as many as 90 % of the nation’s nursing homes may face staff shortages that compromise adequate resident care. The fulfillment of the Olmstead promise on behalf of institutionalized or at-risk Americans with disabilities presents structural, resource allocation, public-private partnership, coordination and federalism issues of unprecedented and sometimes baffling complexity. As indicated by President Bush’s 2001 executive order and the subsequent coordinated planning, the Administration recognizes that new levels of interagency cooperation and high-level oversight will be necessary for the success of Olmstead in ensuring that Americans with disabilities can live in the most integrated settings possible.
Federal Coordination and Olmstead: If there are no interconnected and timely actions by other departments, the effects of what any one agency does in the Olmstead context may be considerably diminished. It does little good, for example, to give an individual the option to use Medicaid waiver funds to provide home-based services rather than going to a nursing home, allowing the money to follow the person, if no accessible housing is available in the community that can meet the individual’s needs, or if no accessible or affordable transportation is available between the accessible housing and other locations in the community where the individual needs or wishes to go. As apparent by under the President’s June 2001 community-based living executive order there are nine major federal agencies involved with implementing Olmstead. To bring together the community resources necessary for the success of Olmstead, the resources, procedures and priorities of over a dozen traditionally separate and self-referencing service systems, funding streams and statutory jurisdictions must be coordinated. At a minimum these include, at the federal level:

Medicaid (both regular and waiver programs)
Transportation
Housing
AT
Attendant services, food and nutrition programs
Older Americans Act
Social Security Administration (SSA)
Community development block grants

Other agencies involved are independent living and veterans benefits, along with private insurance and pensions and state and local programs with their rules and discretionary interpretations of federal provisions. Even the tax system is a factor in the success of Olmstead, insofar as the costs of many categories of home care and assisted living services do not qualify for deductibility, whereas equivalent costs, if encompassed in the fees charged by nursing homes, can lower the middle class family’s or individual’s tax obligation.

Recent experience has demonstrated the enormous difficulty of, and the entrenched institutional and jurisdictional barriers to, achieving seamless, coordinated interagency action, based on shared goals, methods, information resources, timeframes and standards of accountability, among divergent federal agencies, each with its own budget, institutional culture and chain of command. The key problem remains that no one agency is capable of making or carrying out plans in ways and according to timeframes that fully anticipate and reflect the related plans and activities of all the other key participants. Unless coordinating structures such as the Interagency Committee on Community Living can be constituted with the resources and authority to accomplish or compel coordinated planning, the best planning efforts of any one agency may be negated by the varying priorities of another, or even of another entity within the same department.

Olmstead implementation is not a budget line or cost center in its own right. Thus, when the budgets for the various programs, statutory responsibilities and functions making up the work of each agency are determined, the impact on Olmstead is hardly the key variable determining whether or how much programs will be cut. While one agency may develop its budget recommendations and requests to the OMB and Congress with Olmstead in mind, others may not.

Public-Private Partnership: To make the promise of Olmstead and Title II of ADA a reality there will be a need for both private sector and public resources. Even for people with sufficiently modest means to qualify for Medicaid (particularly where spend-down is used), tax laws may play a role in influencing key personal and life choices. Another key variable is availability and affordability of long-term care insurance that does not force policyholders into nursing homes.

Access to insurance is another major issue. The tax code has already been used to enhance the ability of self-employed persons to pay for health insurance but there have not been any suggestions for ways that tax policy and other forms of positive leverage could likewise be used to increase the supply and quality of private disability insurance that would help defray the costs of staying in one’s own home. Various models of coverage, including partnerships between insurance and Medicaid, already exist, but other models that specifically emphasize the meeting of in-home and community-based care costs, rather than devoting their resources primarily to nursing homes, are needed. As long as there is a bias towards institutional care over home- and community-based services in the way covered services are defined, no viable private-sector participation in solving this problem is likely. If such new models are to effectively combine public and private resources, they must also encompass structural changes in the Medicaid and Social Security programs - especially Supplemental Security Income (SSI).

State Initiatives: Although some states have done very well, anecdotal evidence suggests that other states have followed a path of reluctance and resistance, perhaps going through the motions of planning but in the end putting few if any significant mechanisms into place. More than half the states have not moved effectively to implement Olmstead, more than three years after it was decided, raising troubling questions regarding both state capacity and federal commitment. Huge cuts in Medicaid to help close state budget deficits complicates the implementation of Olmstead. Waiver programs, proportionally perhaps even more than regular Medicaid, are likely to be affected by these cuts. While Medicaid cuts are inevitable, HHS and CMS should find means to identify the kinds of cuts least destructive to the Olmstead initiatives and encourage states not to make these kinds of cuts. CMS should also provide additional technical assistance to states on what Title II of ADA requires and share exemplary state plans that have thus far been developed and put into effect.

Recommendations:
- The Administration conduct and publish a comprehensive audit of all state-based Olmstead implementation activities, designed to describe what has worked, to name names of states that have been successful or that have at least tried as well as of those that have not, and to make certain that citizens and voters are as fully informed as possible about the values at stake in the responsiveness or unresponsiveness of their state officials and leaders.
- The Office of Management and Budget and the Congressional Budget Office begin developing cross-agency program scoring methods and unified budgeting models that will link the relevant activities and budget requests of various agencies so as to allow the impact of budget proposals on multi-agency policy initiatives such as Olmstead to be tracked and reported and so as to allow effective budgeting for multi-agency initiatives.
- Congress hold hearings on a range of possible incentives for creation of long-term care insurance coverage from the private sector that will be oriented toward facilitating community living rather than institutional care.
- The Office of Disability contribute considerably to coordination within HHS and the agencies it supervises and develop linkages with similar coordinating offices in other departments that will add further coherence to the federal effort. The new waiver programs reflect important early steps toward infusing consumer-directed community-based services by giving states more flexibility to direct funds in accordance with beneficiary choices.
- Congress hold hearings and invite recommendations on coverage packages, including seller and purchaser incentives, that would help to meet the existing and foreseeable needs for greatly expanded private-sector participation in the financing of home- and community-based services and care.

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