Relates to consumer directed personal assistance programs

Summary of provisions

Section one of the bill amends paragraph (c) of subdivision 2 of section 365-f of the social services law by adding language that clarifies who may qualify as the "designated representative" for an individual eligible (eligible individual) to participate in the program.

Section 2 of the bill amends subdivision 3 of section 365-f to provide that a "personal assistant" shall mean an adult who provides services to an eligible individual under the eligible individual's instruction, supervision and direction or under the instruction, supervision and direction of the eligible individual's designated representative and may include any adult relative of the eligible individual, other than a person legally responsible for the care and support of the eligible individual, an eligible individual's spouse or designated representative.

Section 3 provides the act shall take effect on the first day of April next succeeding the date on which it shall become law.

Justification

The Consumer Directed Personal Assistance Program (CDPAP) is intended to provide chronically ill and physically disabled individuals receiving home care services under the medical assistance program (eligible individuals) with greater flexibility and freedom of choice in obtaining these services_ The eligible individuals or his or her delegated representatives is permitted to self-direct some or all personal care services, home health aide services and skilled nursing tasks pursuant to an approved plan of care.

They may also select a personal assistant. Under current regulations, a personal assistant is an adult, including a family member other than an eligible individual's spouse, parent or designated representative, who provides consumer directed personal assistance to an eligible individual. The personal assistant is compensated for these services. See Department of Social Services Regulations (18 NYCRR) § 505.28 (b) (3)

There are many parents with children eligible to participate in the consumer directed personal assistance program. In many instances, these eligible individuals reside with their parents or one of their parents even after they reach adulthood. They are often in need of

significant care and supervision. These parents often confront a significant dilemma. In an effort to maintain a home for the eligible individual and for themselves, they must work outside the home and depend on the services of a personal assistance to provide the eligible individual's needs. Ironically, the personal assistant could be another family member compensated through the CDPAP.

Juggling outside employment and personal care of an eligible individual can be challenging. If a personal assistant is unavailable, the parent must take time away from work. If this happens regularly it can place the parent's employment in jeopardy.

Sarah B. is a 32 year old with CHARGE, a complex syndrome involving extensive medical and physical defects. Sarah lives with her parents. Her mother is her principal caregiver. Unfortunately, Sarah's mother must work outside the home and her father is not in a position to provide personal care. Sarah is eligible to participate in CDPAP. Arrangements have been made for personal assistants to provide care for Sarah in her mother's absence. Unfortunately, the personal assistants have not always been dependable and Sarah's needs have become more significant. Her mother is forced to take time away from her job to care for Sarah. Repeated absences are creating workplace tension. If Sarah's mother could be compensated through CDPAP for providing personal assistance for Sarah, she could leave her current employment and provide Sarah with more reliable care and at a cost that would not exceed the cost of other personal assistants.

Sarah B. is not the only CDPAP eligible individual with a family facing a similar dilemma.

Legislative history

None.

Fiscal implications

It is estimated that this bill will not increase the number of personal assistants receiving compensation under CDPAP, but will shift some payments from third party providers to parent providers. The bill is cost neutral.

Effective date

This act shall take effect on the first day of April next succeeding the date on which it shall have become law.