June 19, 2015

Assembly Legislation Helps Parent Caregivers
Allows Parents to Serve as Full-time Caregivers for Adults with
Chronic Illnesses and Physical Disabilities

Assembly Speaker Carl Heastie, Majority Leader Joe Morelle and Health Committee Chair Richard N. Gottfried announced the passage of legislation that would allow parent caregivers of chronically ill and physically disabled adults to serve as full-time personal assistants and receive compensation through the Consumer Directed Personal Assistance Program (CDPAP) (A.7532-A, Morelle). This measure was also passed by the Senate and will be delivered to the Governor for consideration.

"For too many families, parents of adults with chronic illnesses or physical disabilities are torn between working to support themselves and their families and caring for their children," said Heastie. "This often causes problems for family members at work, while individuals being cared for may not receive the same level of care or attention as they would if a parent could care for them full-time. This legislation would allow parent caregivers to care for adults with illnesses or physical disabilities without having to worry about missing work and struggling to make ends meet."

"Parent caregivers are often forced to choose between caring for their adult children and being able to support themselves and their children to keep a roof over their heads," said Morelle. "When a parent caregiver works outside the home, not only do they need outside assistance in caring for an adult who is chronically ill or physically disabled, but they also are forced miss work when an outside caregiver proves unreliable. By allowing parent caregivers to serve as personal assistants under CDPAP, this bill helps adults with chronic illness and physical disabilities receive consistent care while allowing parents to care for their adult children without fearing for their financial security."

"Parents or other family members of adults with chronic illnesses or disabilities are often faced with the challenge of juggling work and the care of their family member," said Gottfried. "This legislation will allow parents or relatives other than a spouse to care for the family member under the consumer-directed home care program, while being able to support their families. By giving the patient the option of employing a relative as caregiver, this bill will allow families to give their undivided attention and energy to adults with chronic illnesses and disabilities while still making ends meet."

The legislation would allow family members other than persons legally responsible for the care and support of an eligible individual, spouses, or designated representatives to serve as compensated personal assistants under CDPAP. CDPAP is intended to provide greater flexibility and choice in home care services for chronically ill and physically disabled individuals by allowing the eligible individual to self-direct personal care services, home health aide services and skilled nursing tasks pursuant to an approved plan of care, and select a personal assistant. The program compensates personal assistants who provide consumer directed personal assistance to eligible individuals in the program. Under current law, however, the parents of an eligible individual are not permitted to serve as compensated personal assistants.

Many individuals with chronic illnesses or physical disabilities reside with one or both parents into adulthood, and while the CDPAP program provides flexibility and in-home care, parents often have to take time off from work if the assistant is unavailable, or if an individual is between assistants. Parent caregivers are often burdened when they have to choose between a paycheck and caring for their adult child. The bill would not increase the number of personal assistants compensated under CDPAP, but rather allow parents to care for ailing adults full-time rather than having a third-party home care provider. The bill provides that services provided by personal assistants, including eligible family members, must be consistent with the individual's plan of care, and that the aggregate cost of such services may not exceed the aggregate costs for equivalent services provided by a non-relative personal assistance.