News Release

NCD #03-423
July 28, 2003
Contact: Mark S. Quigley
202-272-2004
202-272-2074 TTY
mquigley@ncd.gov

National Council on Disability Speaks Out on Long-Term Care for People with Disabilities

WASHINGTON--The National Council on Disability (NCD) today released an excerpt from its annual report, National Disability Policy: A Progress Report, which concentrates on the crisis in long-term care facing our nation as the population with disabilities grows and converges with the rapidly increasing demographic composed of older persons.

"Many challenges remain for our citizens who are living with disabilities and who wish to be more independent, more productive, and more engaged in their families and communities," said Lex Frieden, NCD chairperson.

In 2002 the Congressional Budget Office (CBO) determined that for the fiscal year 2000 the federal government spent $615 billion on persons over the age of 65 and $148 billion on children. These costs, along with those of providing services and supports for individuals with disabilities will continue to grow, especially as the baby boomer generation ages. Furthermore, recent declines in middle class wealth will result in more baby boomers depending on public sector programs, placing an even greater demand on the long- term care systems.

In the face of this crisis, society has an ever-growing obligation to use the available resources wisely, and NCD reports the expense of supports will be far less in the individual's own home and community than in nursing homes and other institutional settings. In addition to the economics of this issue, the Supreme Court has clearly reinforced the integration mandate in its Olmstead decision, and the President's New Freedom Initiative is designed to effect changes at the federal level to advance the Olmstead principles. These mandates lead to the compelling need to divert the estimated 73 percent of federal long-term care funds currently targeted to institutional settings into community-based supports and services.

The NCD report describes a variety of cross-programmatic, multi-agency and inter-governmental coordination issues that must be confronted if the goal of minimizing unnecessary and costly institutionalization is to be achieved, pointing to the "unprecedented and sometimes baffling complexity" changes required of state and federal agencies to address resource allocation, public private partnerships, coordination, and structural and federalism issues of Olmstead implementation.

With growing fiscal crises, new concerns arose in 2002 about the sustainability of progress in Olmstead implementation. NCD highlights the problems and recommended solutions.

Federal Coordination - As federal agencies attempt the requisite coordination to comply with the law's integration mandate, NCD emphasizes the enormous challenge facing the Federal Government to achieve seamless, coordinated interagency action. NCD recommends that the Office of Management and Budget (OMB) and the Congressional Budget Office (CBO) work together to develop unified budget models that link the relevant cross agency program activities and budget requests of the various agencies. This would allow effective budgeting, and important tracking and reporting for the multi-agency policy initiatives. Towards this end, the NCD report commends the Administration for establishing the Health and Human Services (HHS) Office of Disability.

This new office should contribute considerably to coordination within HHS and could serve to develop linkages with other agencies. NCD also commends the Administration for the Independence Plus waiver programs within Medicaid, which reflect important early steps towards infusing the important ingredient of consumer direction in community-based services. Additionally, if Olmstead is to become a reality in the lives of individuals with disabilities, federal leaders must ensure that all aspects of an individual's life are addressed, including transportation and housing.

Public Private Partnerships - A full fledged effort to fulfill the promise of Olmstead and Title II of the ADA depends on both private and public resources. Tax laws may well play a vital role in ensuring access to affordable long-term care insurance, bringing the private sector into the efforts to support individuals in their homes and communities. NCD recommends that Congress invite recommendations on coverage packages with incentives to generate such public private partnerships. In creating new options, NCD points to the importance of coordinating new resources with current eligibility requirements for Medicaid/SSI, to ensure that access to these new resources do not inadvertently limit or eliminate Medicaid eligibility for the individuals for whom the new initiatives are intended to provide expanded, rather than limited, opportunities.

State Initiatives - The coordination issues required for Olmstead implementation at the federal level are mirrored at the state level, but the NCD report reflects the grim news that at the end of November 2002 fewer than half the states had Olmstead implementation plans in effect. With the prospect of huge cuts in Medicaid to address many state budget deficits, the Medicaid waiver programs are especially vulnerable. NCD suggests that leaders within HHS and Centers for Medicare and Medicaid Services (CMS) should identify and encourage states to adopt reductions in Medicaid that are least destructive to Olmstead implementation. NCD also suggests that CMS should provide additional technical assistance to states on Title II of the ADA and highlight exemplary state plans that avoid discrimination against individuals with disabilities. In order to engender the nationwide galvanized responses needed to give meaning to the promise of Olmstead, NCD recommends that the Administration conduct and publish a comprehensive audit of all state-based Olmstead implementation activities, highlighting successful state activities in full implementation of the integration mandate.

While this NCD annual report to Congress was under review, the General Accounting Office (GAO) issued a report on Long-Term Care Services and recommended that the administrator for CMS strengthen federal oversight of the growing home and community-based settings (HCBS) waiver programs. GAO was asked to review trends in states' use of HCBS waivers, state quality assurance approaches and the adequacy of federal oversight of state waivers. The GAO report helped to identify the respective state and federal roles in quality assurance and the potential need for additional federal oversight resources. GAO found that in the absence of specific federal requirements for HCBS quality assurance systems, states provide limited information to CMS on how they assure quality of care in their waiver programs for the elderly. More than 70 percent of the waivers for the elderly that GAO reviewed documented one or more quality-of-care problems. According to the GAO report, as of June 2002, almost one-fifth of waivers in place for three years or more had either never been reviewed or had been renewed without a review.

Regional office personnel explained that limited staff resources and travel funds often impede the timing and scope of reviews. GAO recommended that the administrator of CMS take steps to: (a) better ensure that state quality assurance efforts are adequate to protect the health and welfare of HCBS waiver beneficiaries, and (b) strengthen federal oversight of the growing HCBS programs. NCD will address this GAO report and follow-up CMS activity in next year's NCD annual report to Congress covering the period December 2002 to December 2003.