REFORMING LONG TERM CARE SERVICES IN NEW YORK STATE CENTER FOR DISABILITY RIGHTS POSITION PAPER

FEBRUARY 5, 2009, VOL. 6

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.

VIOLATIONS OF STATE MEDICAID PLAN

New York State’s Medicaid Plan requires all counties to offer all services listed in the State Plan to satisfy the federal requirement of “statewideness.” However, with limited state enforcement, counties seem to be able to choose to offer only selected services—directly violating the federal rules. For example, Personal Care Attendant Services (PCA) is on the list of mandatory services in the state plan, however PCA services are not currently offered in Monroe County.

CORRECTION

COUNTY-BY-COUNTY DISPARITIES

In addition to violations of the state plan, there are also significant differences in how each county implements specific programs. For example, some counties are very supportive of home and community-based services, while others are not. This variation in perspective directly contributes to how each county operates. For example, Broome County successfully uses the Consumer Directed Personal Assistance Program (CDPAP), while neighboring Tioga County does not utilize the program often (although advocates feel that the county is improving).

There are also counties that claim to support consumer directed home and community-based services, but they clearly do not understand the philosophical and fundamental distinctions of these services. Essex County has only recently begun offering CDPAP, but the program is only made available to consumers who specifically inquire about it and the County authorizes limited hours.

The LTHHCP, a 1915(c) waiver, provides home and community-based services to seniors and individuals with disabilities of all ages that are assessed to need a nursing facility level of care. It is a vital program to assist people in avoiding unnecessary institutional placement. Yet, there are seven counties in NYS that do not participate in the Long Term Home Health Care Program (LTHHCP): Chenango, Essex, Lewis, Livingston, Schoharie, Schuyler, and Wyoming Counties.

Real Stories of Real New Yorkers

Although there are thousands of anecdotal cases that highlight the negative ramifications of these inconsistencies, below are examples of New Yorkers who were (and are) insufficiently served by their counties.

Upstate in Franklin County, there is a man who currently lives at home with his wife using CDPAP. The man requires suctioning every 15 minutes. After four years of providing this service at night, while working full time during the day, his wife is finding it increasingly difficult to manage without some assistance. Franklin County will only approve this man for up to 80 hours a week, despite the fact that the wife works during the day and has not received a full night’s rest in four years. In many counties, this man would be approved for an appropriate number of hours.

Downstate in Westchester County, there was a man who wanted to receive services in his community. He was deemed “difficult” by the local Certified Home Health Agencies (CHHAs) and thus they would not serve him. The County was not willing to provide him with sufficient PCA hours and he was not interested in CDPAP. One of his neighbors ended up taking on the role of companion and frequently checked on him to compensate for the insufficient care the County provided him. The system failed this man when the County was not willing to provide sufficient PCA hours and the local CHHAs were not willing to serve him.

Upstate vs. Downstate; Apples to Oranges

The disparities in state rules are particularly apparent between upstate and downstate New York. It is not a secret that consumers downstate receive more hours than upstate. There are various factors that may contribute to higher numbers of hours in the City, such as the limited accessibility of NYC leading to the need for more hands-on assistance. While we support efforts to better understand this situation, the limited focus of State officials who want to reduce hours in New York City fails to address the Olmstead concerns of historically underserved individuals who live upstate.

According to Karen Thayer, Executive Director of the Southern Adirondack Independent Living Center, “It is sad, but we sometimes have to inform people that they can’t move because they will not get the same services in a different county, or we have to tell them to move to another county to get more hours.”

EXAMPLES OF COUNTY BY COUNTY DISPARITIES IN CDPAP—AND THE LIST GOES ON…

CDPAP grew in response to the need and demand for consumer directed services and the recognition that this model was more cost-effective than traditional home care. Some NYS counties use the absence of formal CDPAP regulations as an opportunity to avoid providing services, to limit hours, and to deny eligibility. Below are some examples of the variations among counties:

1. Number of hours approved. There are significant variations in hours approved that cannot be explained by variations in consumer needs. Some counties will appropriately approve 24-hour care, while consumers a few miles away, but across a county line, are lucky to get twenty hours of service for the week. In fact, anecdotally, the local tax base may be the best predictor of the amount of Personal Care and Consumer Directed Personal Assistance hours approved—counties with a small tax base drive down their costs by significantly limiting hours.
2. Going outside of home. Home and community-based services should focus on services in the home and community; however, some Social Service Districts claim that you cannot leave the home because it is a home-based program.
3. Requirements for Self Directing Other (SDO) to be present. Some counties actually require the SDO to be in the home whenever the attendant is working with the consumer. Clearly, this misinterprets the responsibility of the SDO, but if the consumer and SDO do not comply, the DSS exceeds its authority by trying to remove the consumer from the program.
4. Qualifications for a person to be self directing. Every county has a different definition. For example, if the consumer has a developmental disability, some counties automatically conclude that they lack the ability to be self directing; regardless of any assessment. There are some counties that do not consider anyone with a mental illness to be self directing, and still others that deny individuals with severe physical disabilities or health impairments. Some counties even disqualify a consumer if they are completely “capable” but they do not have informal supports.
5. Counties are extremely unclear about the role of the Fiscal Intermediary (FI).• Expected level of involvement of FI. The CDPAP agency acts in a FI role to supplement assistance to the consumer, who is ultimately the manager of the personal attendant. Responsibilities of the FI include reviewing timesheets for validity, administering accrual time for attendants, and providing Prior Approval Usage Reports to monitor hours. Yet, beyond these standard roles, certain counties expect the FI to be highly involved in the assessment process, while other counties do not want the FI to be involved in this process at all.

• Unannounced home visits (“spot-checks”). Some counties are requiring FIs to conduct spot-checks on consumers. The FI should have oversight mechanisms in place to monitor the ability of the consumer to manage their services, but requiring FI’s to supervise the attendants through home visits is inconsistent with the consumer directed model of home care.
• Collaboration between county and agency. The level of collaboration and effective communication between counties and agencies varies. Although one agency may cover several counties, not all the counties interact with the agency in the same manner. Some Social Service Districts want to meet and trouble shoot face to face with the agency, which has proven to be beneficial to all parties involved; yet some counties keep the CDPAP agency at arm’s length and avoid collaborative opportunities.

POINT OF ENTRY (POE)

The Centers for Medicaid and Medicare Services (CMS), in partnership with the Administration on Aging (AoA), have provided funding to some states through an RFP to create Aging and Disability Resource Centers (ADRC) as outlined in the Older Americans Act Amendments of 2006 related to Choices for Independence. The New York Connects – Choices for Long Term Care Program has been recognized by AoA as an ADRC. NY Connects was designed to address the need for better information on available long term care programs, but has also highlighted the difficulties of having a county-based system for long term care. A glaring concern is that NY Connects workers have noted that they do not know how to assist family members who are familiar with the long term care system in a different county.

Instead of increasing consistency throughout the state and making access to long term care easier, these projects have actually further fragmented the state’s long term care system. For example, although NY Connects is supposed to include the disability community, there is a great deal of variation in this. Some counties have developed close working relationships with the local disability community and the Independent Living Centers, while others have vigorously excluded the disability community.

Despite some of the issues with NY Connects, the program offers the state a real opportunity to collect statewide data to assess the state’s compliance with the Olmstead decision, including specific data regarding the availability of community-based services around the state. Such information would be critical to the state’s efforts to restructure long term care and the planning efforts of the state’s Most Integrated Setting Coordinating Council.

CONCLUSION

The disparities across counties in implementation and service options are staggering and they have a direct impact on the ability of seniors and people with disabilities in NYS who need services to remain in the most integrated setting. Without increased oversight and coordination, no amount of new programming or waivers will achieve compliance with the Olmstead decision. Consumer directed and community-based programs are the most cost-effective options for providing long term care services. However, until New York develops some consistency in these programs statewide, people with disabilities and seniors will continue to be forced into unnecessary institutional placement—ultimately costing the state many millions of dollars more.