Testimony on Community Supports

The National Council on Independent Living is submitting written testimony to the Senate Health, Education, Labor and Pension (HELP) Committee on community living and long term services and supports.

The National Council on Independent Living (NCIL) is the oldest cross disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents over 700 organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

NCIL was established four years after the 1978 amendments to the Rehabilitation Act of 1973. The 1978 amendments added statutory language and funding for the formation of Centers for Independent Living. The Executive Directors of the newly federally funded CILs met regularly with Rehabilitation Services Administration (RSA) to discuss issues related to the development and expansion of CILs nationwide. Believing that the views of CIL consumers and people with disabilities, as a whole, were not being heard by the federal government, the Administration or the Congress, the CIL executive directors worked to organized and establish the National Council on Independent Living - an organization governed by people with disabilities advocating for the development and expansion of a nationwide network of centers for independent living.

We support Insurance Reform acts such as the Class Act, which would assist people with disabilities who need long term assistance or supports by providing a flexible cash insurance benefit that could be used creatively to purchase services, supports and technology. Beneficiaries would choose how to best meet their own needs. NCIL applauds the creative approach of the bill in addressing the issues around long term care services. We believe an insurance program that is available nationwide and that is affordable and not tied to poverty and unemployment is a laudable goal and a much needed piece of the long term service puzzle.

NCIL also strongly supports The Community Choice Act of 2007 (S.799 & H.R. 1621) by Senator Tom Harkin (D-IA) and Representative Danny Davis (D-IL-7th). NCIL endorses the Community Choice Act of 2007 because the bill addresses provisions that would provide a range of community-based supports that would include activities of daily living such as eating, toileting, grooming, dressing, bathing and transferring; and could include meal planning, shopping and preparation, financial management, and household chores. The legislation also addresses hands-on assistance, supervision and cueing. Supports will be based on a functional needs assessment and all services are furnished in accordance with a plan agreed on by the consumer. The Community Choice Act of 2007 will provide many people with disabilities the opportunity to choose where and how they receive personal assistance services in their homes and communities across the nation.

The balance of our testimony will acquaint you with the National Council on Independent Living, our membership, activities and commitment to ending the institutional bias over the last twenty years. We will also explain our principals and goals for a national system of consumer control and home and community based services.

In terms of long term care policy, instead of “liberty and justice for all” the situation is liberty and justice for some depending on your age or the type and severity of your condition and the budget cycle of the state you happen to live in. It is shameful that people with disabilities who need long term services and supports have more freedom in Colorado than in Tennessee. The happenstance of where you live should not determine your very ability to enjoy your home and community, yet this is absolutely the case today in America.

There is a strong historical linkage between NCIL and the struggle for people with disabilities to live in their own homes and communities and not in institutions. In fact, the definition of a CIL found in federal law (Rehabilitation Act of 1973, as amended) is that a CIL must be non-residential (not located in an institution or long-term care facility) but, rather must be in the community at large. NCIL’s CIL members remain at the forefront of the de-institutional movement.

CILs are required by law and committed by philosophy to serve people with all and any type of disability regardless of age. In the past ten years, because of these legal and philosophical commitments, many have become providers of personal assistance services, which are controlled and managed by the individual with the disability. In fact, the concept of having in-home, personal assistance services controlled and managed by the person with a disability was first promulgated and practiced by one of the founders of the independent living movement and founder of the first CIL in Berkley, California, Ed Roberts. This concept, now well known as “consumer control” of services, is promoted by NCIL’s CIL and SILC membership nationwide. Allowing this option of consumer control within the provision of Medicaid Waiver attendant services is now becoming widespread. CILs were the first type of Medicaid Waiver provider to push for and put into practice consumer control within these programs that are so important to the independent living and the very liberty of thousands of people with disabilities of all ages today.

This direct involvement of CILs with the Medicaid personal attendant service programs has caused a major paradigm shift in the nature of these programs nationwide. This involvement has caused the federal and state agencies who oversee the programs to fundamentally change the way the program recipients, people with disabilities, are viewed. Recipients and independent living advocates are now much more involved in the planning, start-up and delivery of the services provided, including direct control and management of the day-to-day services. This increased involvement in all aspects has strengthened the services and improved the quality of outcomes of the program, including employment of the recipients and others with disabilities.

Now, more than ever, people who use personal attendant services are working and remaining at work. The rise in employment of people who receive home and community services, especially consumer controlled services compared to the stark unemployment of people residing in institutions must be noted, emphasized, and nurtured in our nation’s long term care policies.

The leadership provided by CILs in provision of, and advocacy for, consumer controlled personal attendant services has given NCIL a wealth of direct experience and observations to share. These experiences and observations range from the wondrous and appealing to the woeful and appalling.

Approximately 5.4 million American adults living outside an institution require some assistance from another person with daily living tasks such as dressing, eating, toileting, housekeeping, remembering to take medications, balancing a checkbook, and other everyday activities. There are 2.7 million people needing such assistance have unmet needs.

While progress is slowly being made to change institutional bias, national long-term services policy remains firmly biased in favor of institutionalizing people who need such assistance rather than assisting them in their own homes and/or communities. This bias is reflected in the fact that 72% of the $82.13 billion spent on long term care services goes to institutional services, while only 28% funds community services and supports.

Analysis estimates of 2002 costs, HCBS waivers produced a national average public saving of $43,947 per participant when comparing expenditures between Medicaid HCBS waivers and institutional care.

In 2001, ‘The New Freedom Initiative’ (NFI) was announced as a cross-governmental policy and funding initiative to remove barriers to community living for people with disabilities and to support efforts to comply with the Americans with Disabilities Act (ADA). Later in 2001, an Executive Order outlined the Federal Government’s commitment to community-based alternatives to institutional care for all people with disabilities. Federal agencies were directed to work with states to ensure compliance with the ADA integration mandate that was reinforced by the Olmstead ruling.
CMS has encouraged states to rebalance long term care (LTC) systems and enable money to follow the person through grants to states as well as making policy changes, providing guidance and proposing legislation. Unfortunately, even with the resources, funding opportunities and technical assistance from CMS, many states have not made meaningful LTC system changes and the institutional bias remains prevalent. Many states that have applied for HCBS waivers have long waiting lists for PAS programs. State officials report many groups are not being served, such as traumatic brain injury, HIV/AIDS, or mental illness. The cost of unmet need for Medicaid HCBS is estimated at $1.9 billion for those living alone and $4.7 billion for those living with others.

The NCIL asserts the institutional bias on the part of the federal government and state governments must be reversed and that people of all ages with all types of disabilities must have the option of obtaining assistance with daily living in their homes and communities through a national consumer controlled personal assistance service program. Americans with all types of disabilities and all citizens of the United States deserve no less.

NCIL believes that a national personal assistance service program must have certain characteristics to most effectively and efficiently meet the needs of people with disabilities in their home and communities, that a comprehensive range of services must be available for an effective, efficient personal assistance service program. Personal assistance service, along with assistive technology such as wheelchairs, text readers, and hearing aids, enable people with disabilities to participate in activities at home, at work, and in the community.

Personal assistance service coverage must extend to people of all ages with all types of disabilities including cognitive, sensory, mental and physical disabilities and that eligibility criteria must not discriminate based on age, type of disability and/or any other factor unrelated to need. NCIL’s position is that individuals must be eligible for a national personal assistance service program if they experience a functional disability of a temporary or permanent nature resulting from injury, aging, disease or congenital condition which requires personal assistance services.

Eligibility criteria must be developed that do not exclude people based on age; type of disability; onset of disability such as congenital, injury, disease, or later age onset; and health, family status, race, national origin, cultural background, religion, gender, sexual preference and/or geography.

Eligibility criteria must not include disincentives for employment and/or marriage.

Eligibility must not be based on income factors. Although, cost sharing is acceptable based on a sliding income.
No person must be forced into or kept in an institution because of the denial of Personal Assistance Service.

NCIL believes that the views of personal assistance service users must be paramount in the design, delivery, and evaluation of a national personal assistance service program.

NCIL believes that whatever national program design and funding mechanisms are employed, states should be required to adopt the definition and provide the basic services, program models, coverage and eligibility criteria, governance mechanisms, and grievance and appeal procedures cited in this position paper in order to provide uniform coverage for people with disabilities across the states. NCIL further believes that a gradual phase in of a personal assistance service program would be desirable in order that a personal assistance service infrastructure can be developed to meet the demand.

NCIL believes that financing mechanisms and regulations for a national personal assistance service program should not in any way reflect a bias toward institutionalization and away from Home and Community Based Services.

Cost sharing and/or tax credits must be part of a national personal assistance service plan based on a sliding scale relative to income, but with a cap on out-of-pocket consumer expenditures at a percentage of income and/or on tax credits. The families of children who receive personal assistance service benefits must be treated the same as direct personal assistance service users in terms of cost sharing and/or tax credits.

There must be no unfavorable differential federal match requirement relative to any other long-term service programs.

Any benefits, whether direct vouchers/cash or not, derived by personal assistance service users must not be treated as disposable income nor counted as income for the determination of eligibility for other statutory benefits/services.

Federal and state governments must clarify tax withholding and personal assistant benefit requirements for personal assistance service users and providers.

Long-term services insurance reform should be undertaken in conjunction with a national personal assistance service program which addresses standardized benefits packages and the elimination of pre-existing condition exclusions.

No one who receives personal assistance service benefits at the time of adoption of a national personal assistance service program must lose the benefits they are receiving.

NCIL believes that a national personal assistance service program must include a uniform appeal/grievance procedure independent of funders, providers, and assessors which has an expeditious time-line and which provides expenses for the use of advocates and/or legal counsel by personal assistance service applicants/users or their families.

We must begin to end the disability bias by eliminating the institutional bias. Simply put, we have to stop locking people away from home, friends and family just because they are disabled. Ending this bias will make a better and richer society because history has shown that ending bias and segregation against people, any and all people, is good for us all.

NCIL stands ready and willing to assist the Senate Health, Education, Labor and Pension Committee. Elizabeth Leef, our health policy analyst is available for questions. She can be contacted 202-207-0334 or Elizabeth@ncil.org.

Mitchell P. LaPlante, Ph.D., et al, Unmet Need for Personal Assistance Services, University of California, San Francisco, Center for PAS, 2004

2002 Medstat data

Kitchener, M., Ng, T., Miller, N. & Harrington C. (2006). Institutional and community-based long-term care: A comparative estimate of public costs. Journal of Health & Social Policy, Vol. 22(2) 2006.

Martin Kitchener, Micky Willmott and Charlene Harrington, Home and Community-Based Services: Federal Funding to States. UCSF National Center for Personal Assistance Services.

Harrington, C., Newcomer, R., LaPlante, M., Kaye, S., Stoddard, S., Kitchener, M., & Oxford, M. (2004, November 15). Center for Personal Assistance Services. Presented at the National Association of State Medicaid Directors Fall 2004 Annual Meeting hosted by Held in Cooperation with the Centers for Medicare & Medicaid Services (CMS).