REFORMING LONG TERM CARE SERVICES IN NEW YORK STATE CENTER FOR DISABILITY RIGHTS POSITION PAPER VOL. 5

New York State 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 Alzheimer’s 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.

It was noted in a testimony by NYSDOH Commissioner, Richard Daines, on October 22, 2008 that “an analysis of personal care hours shows wide variation by region and community district. The functional needs of the residents do not match the variation.” There are currently sixteen state programs and waivers available for consumers to receive home and community-based services. Unfortunately, current eligibility criteria are based on classifications of diagnosis and age, and not on the needs of an individual. This results in a fragmented, confusing, and ineffective system in which consumers are often left to choose between mutually exclusive programs, leaving some needs unmet. The system should be reformed so that consumers can receive all the services they need to function in the community and are not restricted to a system that fails to fit services to actual needs.

HYPOTHETICAL CASE STUDIES
The following hypothetical case studies highlight real concerns under the current fragmented home care services system. Because the system is not based on functional need, consumers’ needs are not always met. These are just three of thousands of examples of New Yorkers.

José has multiple sclerosis (MS) and has several lesions on his brain. Although he has similar needs to a person with a traumatic brain injury, his diagnosis is MS and therefore he is ineligible for the TBI waiver. He has lived in his home in Monroe County, New York for twelve years and enjoys the neighborhood. He had a good relationship with his next door neighbor, but she recently retired to Florida and all of José’s relatives live in New Mexico. José was denied home care by his local Certified Home Health Agency (CHHA) because he was deemed a “safety risk” and they were concerned that he had no backup support network. Next, he contacted his county to receive personal care assistance (PCA) but Monroe County does not offer PCA. The county referred José to the Consumer Directed Personal Assistance Program, in which José was extremely interested. However, José could not effectively take on the responsibilities of managing the program alone so José determined that CDPAP would not be a viable option for him

Loraine is classified as having a dual-diagnosis because she has a developmental disability, which leaves her with physical limitations, as well as a mental illness. Although she has a developmental disability, she exceeds the IQ cap for an Office of Mental Retardation and Developmental Disabilities (OMRDD) waiver and the Office of Mental Health (OMH) Home and Community-Based Services (HCBS) will not service her because she exceeds the age restriction. She is, in a sense, too smart to be served through OMRDD and too old to be served through OMH

Phil has been a busy bachelor all of his life. At 58 years old, he owns his home and has some savings. Phil recently had a stroke. He wants to stay in his home to receive services but he exceeds the financial eligibility for Medicaid. The social worker told Phil that he could spend down his earnings in order to qualify for Medicaid. Phil’s concern is that the required spend down would essentially force him into a nursing facility because he would no longer be able to afford his home after he completed the spend down. Phil was not interested in that option. The social worker also informed him of the Expanded In-home Services for the Elderly Program (EISEP), which is specifically designed for those who do not qualify for Medicaid; however, he would have to wait to meet the age requirement of 60 years to be eligible. Furthermore, EISEP may not be sufficient at providing all the services Phil needs because EISEP typically provides only light personal care assistance, such as housekeeping and cooking. Although the Programs of All-Inclusive Care for the Elderly (PACE) does offer the services Phil needs, he is ineligible for Medicare and Medicaid and he does not live in PACE service area.

What happened to José, Loraine, and Phil?

They all ended up in institutions, despite their best efforts to remain in their homes and receive the services they need.

ELIGIBILITY AND SERVICES
One cannot simply look at the number of programs to ascertain the success of home and community-based services (See Chart). These programs are so fragmented that NYS is still not meeting the needs of people with disabilities who want to receive service in a community-based setting as required by the Olmstead decision. The list of potential home and community-based services eligible for federal matching funds is comprehensive. NYS boasts to be one of the only states that offers all of the federally supported services; however, NYS limits access to specific services throughout the spectrum of waivers and programs. For example, one waiver may offer respite services while another waiver does not. The full array of services should be accessible to all eligible populations based on actual needs.

POLICY RECOMMENDATION
NYS must reform the long term care system toward a functional needs-based approach to ensure that seniors and people with disabilities receive the services they need regardless of diagnosis or age and, thus, avoid costly institutionalization. To address inconsistencies in coverage, NYS must develop a system where programs and waivers are aggregately budgeted and regionally coordinated.

1. Stop creating new programs in a way that increases fragmentation
   One step toward solving the barriers posed by the current fragmented system is to stop adding more confusing, overlapping programs. For example, under the auspices of NYSOFA, NYS will pilot the Cash and Counseling program (See Reforming Long Term Care Services in New York State vol. 4) into three counties. Although this is certainly a step in the right direction, the three selected counties have existing Independent Living Centers (ILCs) serving as Regional Resource Development Centers (RRDCs) in the Nursing Facility Transition and Diversion (NFTD) waiver. Cash and Counseling could be implemented as an option under the NFTD waiver, and the ILCs should be tapped for their connection to the disability community as well as their expertise with consumer directed programs. Presently, this collaboration has not occurred. Similarly, state agencies that work on similar programs should communicate with each other regularly. Innovative efforts, which could be valuable if implemented correctly, only add to the confusion and fragmentation instead of streamlining the system.
2. Consolidate waivers, where possible
   Although the Pataki proposal for an 1115 Megawaiver was not the solution, there needs to be consolidation of waivers where possible. Waivers that offer overlapping services should be combined. For example, the Traumatic Brain Injury (TBI) waiver and the Long Term Home Health Care Plan (LTHHCP) could be combined under the Nursing Facility and Transition (NFTD) waiver. The benefit of the NFTD waiver is that the available services function in a menu format where consumers can select only those services that they need; thus the state only pays for the services rendered and not for the total package of services available. Although CDR advocates for combining certain waivers (e.g. expand the NFTD waiver), CDR does not support waiverizing state plan services.
3. Address the issue of funding inequities across disability types
   For historical reasons, certain disability diagnoses have garnered more funding and service options than others, regardless of functional needs. The Center for Disability Rights (CDR) believes that all disability groups deserve funding based on functional need. CDR does not advocate for reducing funding to any one group, but rather supports expanding program options to more groups in order to bring them up to the level of the more successful programs. This is an effort to reduce the “silo” effect where, depending on the diagnosis, people with disabilities are classified under one program or another—thus preventing them from receiving all of the services they need. Individuals with a dual-diagnosis are the ideal case study to exemplify the problems with the current fragmented system. For example, people with a dual diagnosis of cognitive and mental health disabilities ought to be served under the OMRDD waiver, if the waiver does in fact best serve their functional needs.

LONG TERM CARE SERVICES

IN THE MEDICAID STATE PLAN:

Certified Home Health Agency
(CHHA)

Eligibility: Eligibility is contingent upon a doctor’s prescription. CHHAs have final determination regarding hours of coverage—can choose to deny.

Services*: Skilled nursing, physical therapy, occupational therapy, medical social work, durable medical equipment, home health aid service.

Private Duty Nursing (PDN)

Eligibility: Eligibility is contingent upon a doctor’s prescription and availability of RNs and LPNs in service area.

Services*: Skilled nursing services beyond the scope of a CHHA.

Consumer Directed Personal Assistance Program (CDPAP)

Eligibility: Hours are awarded by County Nurse at the local DSS and are reviewed every 6 months.

Services*: Services can include any of the services provided by a personal care aid, home health aid, and or nurse. These can range from strictly personal care to explicit skilled nursing services.

Personal Care Attendant Services(PCA)

Eligibility: Hours and services are awarded by County Nurse at the local DSS and are reviewed every 6 months.

Services*: Housekeeping, meal preparation, bathing, toileting, and grooming.

Managed Long Term Care (MLTC)

Eligibility: Age 65+; assessed to need facility level of care; able to safely stay at home; expected to need services for at least 120 days; qualify for Medicare or Medicaid.

Services*: Care management, nursing, physical therapy, occupational therapy, speech pathology, medical equipment and supplies, podiatry, dentistry, optometry, respiration therapy, social day care, social/env. supports, non-emergency transportation for medical needs.

Adult Day Programs

Eligibility: Eligibility is contingent upon a doctor’s orders for treatment and must be assessed to need facility level of care. If either of these conditions changes, one may not be eligible for services. Must have access to centralized location.

Services*: Services contingent upon day program classification-social or medical. Services can include nursing, transportation, leisure activities, physical therapy, speech pathology, nutrition, occupational therapy, medical social services, psychosocial assessment, rehabilitation and socialization, nursing evaluation and treatment, coordination of referrals for outpatient, dental services.

Programs of All-Inclusive Care for the Elderly (PACE)[PACE is in state plan but also available through Medicare.]

Eligibility: Age 55+; assessed to need facility level of care; live in the PACE service area; be able to live safely in the community; qualify for Medicaid or Medicare.

Services*: Primary care services, social services, restorative therapies, personal care and supportive services, nutritional counseling, recreational therapy, and meals.

NOT IN THE MEDICAID STATE PLAN:

Expanded In Home Services for Elderly Program (EISEP)

Eligibility: Age 60+; by unqualified for Medicaid.

Services*: Non medical in-home services such as housekeeping, personal care, respite, and case management.

IN HCBS WAIVERS:

Long Term Home Health Care Program (LTHHCP, aka Lombardi)

Eligibility: Assessed to need Residential Health Care Facility level of care; must meet income and resource allowances according to spouse rules; eligible for and in receipt of Medicaid; individual’s costs must be less than 75% of Nursing Facility placement.

Services*: Case management, home delivered meals, housing improvements, respiratory therapy, medical social services, nutrition and dietary services, respite care, social day care, moving assistance, social transportation, and congregate meals.

Office of Mental Retardation and Developmental Disabilities (OMRDD)

Eligibility: Diagnoses with a DD prior to age 22; be eligible for an ICF/MR level of care; be Medicaid eligible; have chosen HCBS waiver services over institutional care.

Services*: Service coordination, residential habilitation, day habilitation, supported employment, prevocational services, respite services, environmental modifications, adaptive equipment, plan of supportive services, family care, consolidated supports and services.

Office of Mental Health (OMH)

Eligibility: Age <18; have a serious emotional disturbance and multiple/complex health needs; assessed to be eligible for institutional level of care; can be cared for in community-based setting.

Services*: Individualized care coordination, crisis response services, intensive in home services, respite care, family support services, and skill building services.

Traumatic Brain Injury (TBI)

Eligibility: Age 18-65; eligible for Medicaid; be assessed to need facility level of care; diagnoses with a TBI.

Services*: Service coordination, independent living skills training, structured day program, home and community-based support services, respite care, community integration counseling, substance abuse programs, intensive behavioral programs, environmental modifications, medical equipment and supplies, transportation, and vehicle modifications.

Nursing Facility Transition and Diversion (NFTD)

Eligibility: Age 18+; eligible for Medicaid; be assessed to need facility level of care.

Services*: Service coordination, independent living skills training, structured day program, home and community support staff, respite care, community integration counseling, positive behavioral intervention service, environmental modifications, community transition services, assistive technology, congregate and home delivered meals, respiratory therapy, moving assistance, peer mentoring, medical home visits, nutritional counseling, and wellness counseling.

Care at Home—DOH

Eligibility: Age <18; declared physically disabled according to SSA standards; had been admitted to hospital for at least 30 consecutive days; eligible for Medicaid (based on parents)

Services*: Case management, respite, home/vehicle modification.

Care at Home—OMRDD

Eligibility: Age <18; have a DD; meet SSI criteria for disability; demonstrate complex health needs; assessed to need ICF level of care; eligible for Medicaid (based on parents)

Services*: Case management, respite, assistive technology.

Bridges to Health (B2H)—OCFS

Eligibility: A child/youth in foster care; determined to have serious emotional disturbances, DD, and medical fragility; assessed to have institutional level of care.

Services*: Health care integration, family/caregiver supports and services, skill building, day habilitation, special needs community advocacy and support, prevocational services, supported employment, planned respite, crisis avoidance, management and training, immediate crisis response services, intensive in-home supports, crisis respite, adaptive and assistive equipment, accessibility modifications.

*Efforts were made to provide complete lists of services but certain services may have been omitted.