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 US Supreme Court established in the Olmstead decision the civil right that people are to receive long term care services in the most integrated setting (MIS) 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.

BACKGROUND

Institutional bias was established at the inception of Medicaid in 1965. Federal law made nursing facility services mandatory and home and community-based services (HCBS) optional. States could add the personal care option to their Medicaid plan, but states either limited eligibility or avoided that option altogether. Waivers, which allow the federal government to waive certain statutory requirements so that states can provide services outside of a nursing facility, were developed in the early 1980s. Waivers have provided opportunities to people who do not want to be placed in an institution, but they have still operated as an exception to a long term care system biased toward institutions.

FRAMEWORK

The prevailing framework for long term care services is an unequivocal form of segregation where people with disabilities of all ages are isolated from mainstream society and warehoused in institutions. The most integrated setting mandate is a fundamental issue of civil rights. The disability community likens the Olmstead decision to the landmark Brown v. Board of Education school desegregation case during the civil rights movement of the 1950s and 1960s. The disability community’s civil rights movement is happening now. The struggle to end society’s institutional bias is paramount to the success of any long term care service plan.

New York State’s breakdown of funding going to services for seniors and people with physical disabilities in institutions compared to funding for community-based services is 74% to 26% respectively (Medicaid LTC Spending for Older People and Adults with Physical Disabilities in NY, AARP Public Policy Institute, 2006). According to the AARP Public Policy Institute, “The proportion of Medicaid LTC spending going to HCBS has gone up at a rate of about 1 percentage point per year since 1995. If recent average rates of change in HCBS and nursing home spending continue, the nation will not reach a 50/50 spending balance between HCBS and institutional services for these populations until 2020” (A Balancing Act: state long term care reform, July 2008). People are increasingly choosing home and community-based services, while the state is clearly not moving at an adequate pace to implement their right to make that choice.

NYS REGULATIONS THAT REINFORCE THE INSTITUTIONAL BIAS

Biased Rate Setting Methodology

One example of systemic institutional bias is embedded in the OMRDD waiver rate-setting methodology. It requires as much administrative effort to set the rates for services to a single person as it does for a multi-person facility or large group home. It appears that agencies are inclined to focus their resources on providing congregate living rather than services in the most integrated setting because it makes the most financial sense to the agency. The system of serve-more-to-make-more results in a failure to address individual needs, a demonstrated history of poor and even horrible outcomes, and an inherent violation of civil rights.

Workforce Restrictions

NYSDOH regulations are more restrictive than federal regulations regarding which family members can receive pay for providing services to a consumer. As the NYS regulation stands, payment for CDPAP services cannot be made to the consumer’s spouse, parent/guardian, son, son-in-law, daughter, or daughter-in-law; however, federal law permits payment to all family members except spouse and parent of a minor child. Expanding the pool of potential paid staff is critical to the success of individuals wanting to live in the most integrated setting. NYS should amend its restrictions to be consistent with federal law.

Unnecessary Licensing Requirement

One barrier to effective implementation of the NFTD and TBI waivers is the requirement that home and community support services (HCSS) providers be licensed. This regulation is a medical model approach that has forced people into facilities. For example, if a person on the TBI waiver who needs HCSS is required to have a licensed home health aide, his/her options for service providers are automatically limited to licensed providers. Non-licensed providers, who are less costly to NYS and are more capable of providing services to accommodate the individual’s needs, are excluded due to the licensing requirement. With few choices for providers, if the individual is denied by the licensed providers, they are forced into a facility. Moreover, for those individuals who can get services through a licensed provider, NYS spends more than it would if non-licensed providers were allowed to supply HCSS.

Forced Nursing Facility Placement

Under current NYS regulations, if an individual is deemed eligible for nursing facility services by a hospital and the individual does not accept the first available nursing facility placement within a 50 mile radius, their Medicaid coverage can be terminated. This regulation, which forces people into institutions, is a blatant violation of the Olmstead decision. The state should amend its policies to allow individuals the time needed to organize community based services without forcing nursing facility placement.
Inconsistent County Level Administration

One of the primary obstacles to community living is inconsistent county level policies and implementation of programs. To a person requiring services, navigating the local bureaucratic maze is challenging. Often times, it is the frontline bureaucrat who holds the approval authority, despite possessing insufficient knowledge of eligibility requirements and regulations. NYS should ensure that individuals can get the services they need, regardless of county restrictions and uninformed frontline bureaucrats.

UNENFORCED NYS REGULATIONS THAT SUPPORT MIS

In addition to the aforementioned regulations that undermine community living, there are also several existing NYS regulations that support community options but are not being implemented, again reinforcing the state’s institutional bias.

Certified Home Health Agencies (CHHAs) consistently misinterpret NYS regulations regarding safety and then use this misinterpretation as a rationale for refusing long term community-based care. In addition, instead of doctors/hospitals writing orders for long term care services, the determination most often lies with the CHHA. Because a doctor’s orders are not written, individuals are not able to exercise their rights under Catanzano. CHHAs frequently avoid providing services to individuals with higher needs. If a CHHA claims an inability to provide a needed service, the individual has no avenue for appeals. The result is that the individual is forced into an institution. Adding to this failure to support the choice for community living, CHHAs do not keep waiting lists for services. Olmstead indicates that waiting lists for individuals wanting to receive community-based services must move at a reasonable pace, but what is reasonable cannot be effectively assessed or implemented without a waiting list.

“Back fill” is another state concern. As people transition out of nursing facilities, the State has an opportunity to rebalance by decertifying the empty beds, often called “right-sizing.” The ultimate goal of the NFTD waiver will be compromised if, for every person that is freed from an institution, facilities are allowed to find a new warm body to occupy or “back fill” the facility’s bed. If NYS continues to support these facilities at existing levels, resources will be diverted away from more effective community-based programs. The beds left vacant through progress in MFP should be phased out.

MISCC—ON ITS WAY, BUT NOT THERE YET

The Most Integrated Setting Coordinating Council (MISCC) was established “to assist in ensuring that persons of all ages with disabilities receive services and supports in the most integrated setting which is appropriate to their needs and enables them to interact with their families, friends, peers, and colleagues” (Addressing the Service and Support Needs of New Yorkers With Disabilities). Under the Pataki administration, the MISCC failed to meet any deadlines and failed to issue the required plan for enabling seniors and people with disabilities to live in the most integrated setting. Under Governor Paterson, the state agency members of the MISCC have issued reports and with the direction of Commissioner Ritter, are taking the first steps toward drafting a plan. Governor Paterson also vetoed A.7727/S.8047-A, a bill to develop plans for each individual wanting to live in the most integrated setting. While CDR recognizes that there were issues with the legislation, we still must ask – what is the plan for NYS to make living in the most integrated setting the norm and not the exception?

DATA ON NUMBER OF PEOPLE IN INSTITUTIONS IN NYS WHO WANT TO BE IN THE COMMUNITY

The Long Term Care Minimum Data Set (MDS)’s Q1a states, “[the] resident expresses/indicates preference to return to the community.” According to the second quarter 2008 report by CMS, there are presently 106,653 people in nursing facilities in NYS and 21.1 percent have answered affirmative to Q1a; indicating 22,504 people currently residing in nursing facilities who would prefer to integrate back into the community.
For more information, contact Leah Farrell, Policy Analyst at:

CENTER FOR DISABILITY RIGHTS ? 99 WASHINGTON AVENUE, SUITE 806B ?ALBANY, NY 12210 V/TDD (518) 320-7100 ? FAX (518) 320-7122 ? WWW.ROCHESTERCDR.ORG