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

NOVEMBER 13, 2008

In order for people with disabilities to receive services in consumer directed, community-based programs they require access to personal attendants. The Center for Disability Rights (CDR) recommends two solutions for expanding the pool of personal attendants: (1) Amend NYS regulations regarding payment to family members for attendant services to be consistent with federal regulations, and (2) Develop a program to train people with certain disabilities to join the workforce as personal attendants.

SOLUTION ONE: AMEND NYS REGULATION ON WHO CAN RECEIVE PAYMENT AS A PERSONAL ATTENDANT.
According to federal regulations, personal attendants (PAs) cannot be a family member who is “legally responsible” for the care of an individual. This is interpreted to include spouses and legal guardians (parents) of minors. New York State regulations are more restrictive than federal regulations and expand the prohibitions on attendant employment to certain members of the consumer’s family to include spouse, parent, child, son-in-law, or daughter-in-law.

A report produced by the National Blue Ribbon Panel on Personal Assistance Services noted the problem with the current limited definition of payment for personal attendants.

“This [federal] definition of family prevents some individuals from receiving reimbursement for personal care services because they are unable to identify providers outside of the family (Atchley, 1996 ). Thus, this prohibition may limit access to personal care services, particularly in rural areas, and may encourage institutionalization. Additionally, some older persons may prefer the opportunity to choose family members or friends as workers. Presumed benefits from doing this are: less anxiety about having a stranger in the home, reduced staff turnover and non-coverage due to unscheduled absences, and increased consumer satisfaction with services (Flanagan, 1994 ) .”

Developing a relationship with a personal attendant is essential to the success of the Consumer Directed Personal Assistance Program (CDPAP). The role of a PA is fundamentally invasive because a PA is required to work in a consumer’s home and have physical contact with the consumer. This intimate relationship is ideally suited for family members; however, under current NYS regulations, certain family members are excluded from receiving pay for attendant services. It would be beneficial to consumers to expand the pool of potential employees to include those family members that are currently excluded under 18 N.Y.C.R.R. § 504.14.

SOLUTION TWO: INCREASE OPPORTUNITIES FOR PEOPLE WITH DISABILITIES (E.G. MENTAL ILLNESS, DEVELOPMENTAL DISABILITY, ETC.) TO GAIN QUALITY REWARDING EMPLOYMENT.
Employment opportunities for people with disabilities are unfortunately limited. Integrated community-based employment is a goal for many people with disabilities; particularly in light of recent studies that highlight the flaws of sheltered workshops. Independent Living Centers (ILCs) were established on the premise of people with disabilities working to help people with disabilities. For decades, ILCs have successfully employed people with varying types and severity of disability in integrated employment with nondisabled individuals collaborating for the advancement and support of people with disabilities. In contrast, sheltered workshops are not only less satisfying to employees than community-based jobs, but they are nearly three times more costly to the state . Direct care employment is a good fit for people with certain types of disabilities because it allows people with disabilities to gain solid employment and to develop a peer-to-peer relationship with other people with disabilities.

Best Practice
An award-winning program based in Ohio, Linking Employment, Abilities, and Potential (LEAP), offers three levels of personal assistance training for people with disabilities to gain employment as personal attendants. The program originally targeted only those with mental retardation (with varied degrees of functional skills), but it quickly expanded to include people with learning disabilities, different forms of mental illness, all levels of hearing loss, and people with vision impairments. Several of the program’s participants have dual diagnoses (e.g. have a learning disability and are clinically diagnosed with depression).

1. Atchley, R.C. (1996). Frontline workers in long term care: recruitment, retention, and training in an era of rapid growth. Oxford, OH: Scripps Gerontology Center.
2. Flanagan, S.A. and Green, P.S. (1997). Consumer-directed personal assistance services: Key operational issues for state CD-PAS programs using intermediary service organizations. Washington D.C.: U.S. Department of Health and Human Services.
3. Dautel, P., and Frieden, L. (1999). Consumer choice and control: Personal attendant services and supports in America Report of the Blue Ribbon Panel on personal assistance services. Houston, TX: Independent Living Research Utilization.
4. Cimera, R. (2007). Research and practice for persons with server disabilities. Vol. 22, No. 4.

STATE REGULATION
18 N.Y.C.R.R. § 504.14
§ 504.14(h)(2) Payment.
Payment for personal care services shall not be made to a patient’s spouse, parent, son, son-in-law, daughter or daughter-in-law, but may be made to another relative if that other relative:
(i) is not residing in the patient’s home; or
(ii) is residing in the patient’s home because the amount of care required by the patient makes his presence necessary.
FEDERAL REGULATION
42 C.F.R. § 440.167
§ 440.167 Personal care services.
Unless defined differently by a State agency for purposes of a waiver granted under part 441, subpart G of this chapter—
(a) Personal care services means services furnished to an individual who is not an inpatient or resident of a hospital, nursing facility, intermediate care facility for the mentally retarded, or institution for mental disease that are—
(1) Authorized for the individual by a physician in accordance with a plan of treatment or (at the option of the State) otherwise authorized for the individual in accordance with a service plan approved by the State;
(2) Provided by an individual who is qualified to provide such services and who is not a member of the individual’s family; and
(3) Furnished in a home, and at the State’s option, in another location.
(b) For purposes of this section, family member means a legally responsible relative.
[42 FR 47902, Sept. 11, 1997]