CENTER FOR DISABILITY RIGHTS POSITION PAPER
SEPTEMBER 29, 2008, VOL. 1

New York State’s long term care system needs reform. The current system is complicated, inefficient and biased toward institutional placement for seniors and people with disabilities who need long term care services. As the population ages, the need for long term care services in the community will continue to grow. While the Center for Disability Rights (CDR) has a reputation for activism, CDR advocates an evolution rather than revolution in long term care services. Below is a list of ten issues that must be addressed through the reform process. CDR will issue position papers expanding on each of the issues outlined below.

Living in the Most Integrated Setting must be the norm, not the exception.
People must be able to live and receive services in the most integrated setting desired. In 1999, the U.S. Supreme Court established in the Olmstead decision the civil right that people are to receive long term care services in the most integrated setting appropriate to their needs. Unfortunately, New York State government regulations too often continue to reinforce traditional and costly facility-based approaches when community-based services would be more effective, producing both higher consumer satisfaction and more cost-effective outcomes.
Future papers will discuss means of ending the institutional bias and promotion of services in the most integrated setting.

Adopt an independent living approach rather than medical model of long term care services.
The traditional model of long term care services emphasizes a medical approach to meeting needs, often involving unnecessary high cost professionals. The independent living approach to long term care services vests control of services in the consumer rather than the professional. Many of the services that are widely perceived as “medical” are simply a part of daily life to a person with disabilities. The independent living paradigm supports an integrated life in the community, with personal care workers providing needed assistance in tasks ranging from dressing and bathing to managing breathing devices, feeding tubes and catheters. Tasks that hospitals routinely train family members to perform can also be done in a home setting by other laypersons under the direction of the individual or their family member.
Future papers will expand on improved services and cost-effectiveness of the independent living approach.

Make consumer directed services the first choice.
The traditional model of agency controlled long term care services is outmoded, expensive, and paternalistic. Consumers need to be empowered to control what services they get, when and by whom. This kind of empowerment of the consumer will lead to better health outcomes and cost savings.
Future papers will address successful consumer directed initiatives (e.g. Consumer Directed Personal Assistance Program) as well as identify limitations in agency directed programs.

Entry, eligibility and services should be needs-based.
NYS should focus on functional needs of the individual, rather than age or diagnosis, in reforming long term care services. This applies to outreach and point of entry, eligibility, and service provision. The current system is fragmented based on classifications of diagnosis and age, stemming from social and political accidents of history, and now reflects an outmoded, confusing and impractical approach to meeting very real human needs. For example, cueing and supervision assistance should be available to anyone with cognitive impairment, such as a person with Alzheimer’s disease or a person with a Traumatic Brain Injury. However, the person with Alzheimer’s may be denied cueing and supervising assistance due to lack of funding in the Alzheimer programs, while the latter receives the needed assistance through the Traumatic Brain Injury Waiver. A carefully planned shift toward services based on functional need is an important component of long term care services reform.
Future papers will elaborate on the benefits and mechanisms of a needs-based system.

Improve statewide consistency of services.
There are vast disparities in services offered from community to community across New York State. There is little State enforcement of regulations and the counties make inconsistent decisions, sometimes directly in violation of federal and state mandates. The disparities in the system affect the information disseminated to consumers, the hours of services provided, and the programs and service options available in each community. Anecdotally, it appears that the best predictor of the hours of service approved by the county is the local tax base rather than the needs of the residents. Instead, each county must be responsive to consumer needs in a manner consistent with applicable laws.
Future papers will identify specific failures to meet the legal requirement of statewideness and suggest solutions.

Housing is an essential component of community-based long term care services.
One of the biggest barriers for individuals who want to transition out of a nursing facility or institution is the lack of accessible, affordable, integrated housing. Too often, a costly but otherwise unnecessary facility is the only form of shelter available. Without housing, transition efforts are stymied. NYS needs to bring the issue of housing into the spotlight in the discussion of long term care service reform. While additional accessible, affordable, integrated housing programs are needed, there are creative measures that do not require new spending.
Future papers will discuss ways to foster more accessible, affordable, integrated housing options.

Managed care is not right for all populations.
CDR recognizes that there is a trend toward managed care in both acute and long term care services. However, managed care does not suit the needs of people with significant disabilities and intensive needs for services. There is an inherent conflict of interest in a managed long term care system that has a built-in financial benefit to providers for withholding services and limiting access. People with disabilities who have long term care needs should have access to the services they require, the providers they want, and in the setting they desire without profit-driven capitation and other dysfunctional restrictions.
Future papers will elaborate on consumer focused principles for managed long term care services.

Long term care insurance is not the answer.
Long term care insurance is fundamentally for the healthy. A person has to check their crystal ball and predict whether and when they will require long term care services. Most people with disabilities not only cannot afford the costly premiums, but they are also not likely to be eligible for coverage given existing insurance industry underwriting practices. The insurance business is based on actuarial analysis and people with disabilities who already need long term care services or are likely to need them soon will not produce a profit.
Future papers will evaluate efforts to expand long term care insurance programs in NYS.

Amend the Nurses Practice Act (NPA) to allow more opportunities for non–medical workers to provide services.
The NPA’s requirement that certain services be provided by an RN or LPN is directly impeding progress in the consumer directed long term care movement and costing NYS money. Many consumers needs do not require a technically trained and licensed provider. The cost savings of a non-medical model are extraordinary. CDR believes that NYS should provide a myriad of alternatives to consumers for receiving the services they require—while reducing reliance on unnecessary medical model services.
Future papers will provide rate setting structure information for New York State and outline the benefits of trending toward noncertified assistance programs.

Look to young persons with disabilities as a model for future long term care consumers.
The elderly population is changing and the traditional model of long term care will not be compatible with the needs and wants of future generations. Instead of excluding younger persons with disabilities from the discussions of long term care policy and focusing almost exclusively on the elderly, the disability community should be sought out as a resource. Organizations dedicated to aging issues are looked to for long term care insight and recommendations. Yet, the attitudes and preferences of the younger disability community are a better predictor of the attitudes and expectations of aging baby boomers who have lived in a society that increasingly provides accessibility and accommodations to people who acquire disabilities. They are sure to expect more control over their services than previous generations of seniors.
Future papers will explore lessons learned from the disability community, as well as recommendations for how the disability community can get involved in the planning process.

AVERAGE COSTS OF LONG TERM CARE IN NYS

• $319/day for a semi-private room in a nursing home
• $304/day for a private room in a nursing home
• $3,295/month for care in an Assisted Living Facility
• $72/day for care in an Adult Day Health Care Center
• $25/hour for a Home Health Aide
• $19/hour for Homemaker services
  Source: National Clearinghouse for Long Term Care Information, U.S. Department of Health and Human Services, 2008

CENTER FOR DISABILITY RIGHTS – 99 WASHINGTON AVENUE, SUITE 806B – ALBANY, NY 12210 – V/TDD (518) 320-7100 – www.rochestercdr.org