NATIONAL COUNCIL ON INDEPENDENT LIVING (NCIL)
Testimony to the Medicaid Commission by Executive Director John Lancaster
September 6, 2006

Chairman Sundquist, Chairman King, members of the Medicaid Commission, thank you for the opportunity to address you, today. My name is John Lancaster.

The National Council on Independent Living is a consumer driven membership organization whose mission is to advance independent living and the rights of people with disabilities. Centers for Independent Living have been pioneers in nursing home transition. We all look forward to the day when all of us can choose where we want to live.

We have made unprecedented strides in our efforts to end the institutional bias! In 2004, Title VII, Part C centers for independent living prevented 27,843 persons from entering nursing homes and assisted 2,864 who wanted to leave nursing homes. Over the past 10 years we have seen a gradual shift away from the nursing home bias in our long-term care system. In 1993, 84% of Medicaid expenditures for long term care were for institutional care. In FY 2005, that figure had dropped to 63%. This means that 37% of Medicaid expenditures for long term care services was spent on community based services. This is real progress!

However, much more needs to be done. Whether you live in a nursing home or remain in the community depends largely upon where you live. For example, in 2004, 44.8% of New Mexico’s long-term care expenditures went to community-based services, while a negligible .6% of Tennessee’s long-term expenditures went to community services. Some individuals have been known to move from one state to another so that they could move from a nursing home to the community.

Money Follows the Person and other HCBS Provisions in the Deficit Reduction Act
Money Follows the Person (MFP), one of NCIL’s top priorities, was included in this year’s Deficit Reduction Act. MFP will fund $1.75 billion in Demonstration Projects for transitioning people with disabilities to community settings over the next five years. As implementation of MFP gets under way over the coming months, we urge the Centers for Medicaid and Medicare Services to strongly encourage states to apply, and be vigilant to ensure that states have the active involvement of the disability community in the development, oversight and evaluation of state efforts. Some states including California, Virginia, Texas, Connecticut, Kansas, Delaware, Georgia and the District of Columbia are embracing MFP. Unfortunately, several states, like Alabama and Utah, have indicated that they will not take advantage of the opportunities MFP offers.

In addition to MFP, the Deficit Reduction Act contained Section 6086, which allows states to include Home and Community-Based Services as a State Plan Option. Under this provision, states will be permitted to provide a package of community-based services under their state Medicaid plans without having to obtain a HCBS waiver.

States will be free to offer the full range of HCBS waiver services to seniors and people with disabilities up to 150% of the poverty level. States that adopt the state plan option will be required to establish needs-based criteria for institutions that are more rigorous than those for community services. Individuals who do not meet the institutional level can be still be served in the community under the state plan option, a change we support.

Among other provisions we support are: The lack of a budget neutrality requirement and the ability of consumers to direct their own care.

NCIL vigorously opposes portions of Section 6086 that would permit states to offer HCBS to set enrollment caps, maintain waiting lists, and a waiver of the requirement that services be provided statewide. NCIL is concerned that the enrollment caps may undermine services under existing forms of optional coverage. The end result would be to impose caps and/or institute waiting lists where they were previously not permitted to do so.

The DRA also provides for Home and Community Based Alternatives to Psychiatric Residential Treatment for Children and authorizes the Secretary of HHS to award one-year grants to up to 10 states to offer home and community based waiver services to children with serious emotional disturbances under the age of 21 as an alternative to residential psychiatric treatment facilities. However, relatively few children will access this benefit and the one-year duration is so short that it will be difficult to evaluate if the program really is effective.

Cost Sharing , the DRA and the MMA
The Deficit Reduction Act and Medicare Modernization Act also may mean that Medicaid recipients with disabilities, including dual eligibles, may face substantially higher cost-sharing. This additional cost-sharing, will be charged to individuals living in the community--but not those living in institutions--which only furthers the institutional bias. We are gravely concerned that the enforcement provisions of the Deficit Reduction Act, which accompany this cost sharing could wind up forcing persons with disabilities into institutions to obtain needed medications, services and supports and would urge this commission to redress this disparity in its recommendations. A good first step would be to remedy the institutional bias in cost sharing in the Medicare Modernization Act for full benefit dual eligibles, through the adoption of S 2409/ HR 5907, the Medicare Part D Home and Community Services Copayment Equity Act of 2006, sponsored by Senator Gordon Smith of Oregon and Representative Jim Ramstad of Minnesota.

Managed Care and Cash and Counseling
We wish to speak out on two other issues that have been raised in proposals by numerous commissioners: 1) increased reliance on Medicaid Managed care for persons with disabilities; and 2) increased reliance on the cash and counseling and personal budget models for persons with disabilities. We strongly urge commissioners not to put the cart before the horse by implementing Medicaid Managed Care on a large scale prematurely. Please heed the extensively scholarly work done by the California Health Foundation and others that underscores the need for a thoughtful approach to program design, which stresses development and implementation of effective safeguards, coordination of care, and evaluation. The California Health Foundation advises that careful consideration be given to the barriers to access (both physical and communications) that persons with disabilities encounter in health care delivery and points out the need to develop curricula to ensure that health care providers deliver culturally competent care to consumers. Furthermore, as a consumer-driven organization, we must stress the importance of extensive consultation, input and consensus-building between states moving to Medicaid managed care, Medicaid consumers and disability advocacy organizations in advance of implementation.

NCIL also urges caution to Commissioners interested in increasing reliance on the cash-and-counseling and personal budget models. Although we welcome self-direction and consumer control, fixed or capped budget allotments gravely concern us because they are inflexible in the face of changing circumstances or resource intensive conditions. Would capped monthly payments be adequate to meet the needs of persons who rely on ventilators and live in their homes? What would happen to individuals with fixed monthly payments if their condition, regimen of care, or service provision costs changed in midstream? Since to date, cash-and-counseling has only been done on a demonstration basis, these important questions remain unanswered. Accordingly, we urge you to follow the Hypocratic Oath and “first do no harm!”

MiCASSA and other systemic HCBS reforms
For many years, one of NCIL’s top priorities has been the Medicaid Community-Based Attendant Services and Supports Act which re-directs the focus of the Medicaid long-term services program from institutions to home and community services and supports. MiCASSA would establish a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. The Olmstead decision affirmed the Americans with Disabilities Act (ADA) requirement that services be provided in the most integrated setting appropriate to the needs of the individual. Olmstead implementation has not been a priority for many states; implementation varies from state to state; and seven years after the court’s decision adults and children with disabilities remain in institutions and nursing homes. MiCASSA will assist states with Olmstead compliance.

Significant new appropriations to serve more people within the community are highly unlikely in most states without further policy guidance from the Centers for Medicare and Medicaid Services. NCIL supports demonstration projects that would build infrastructure and develop a direct care workforce. NCIL supports monitoring of quality in community-based services. We demand nothing less than a long-term care system that affords us the opportunity to choose how and where we live. Thank you.