Today, Senator Simcha Felder (D-Brooklyn) and Assembly Majority Leader Joseph D. Morelle (D-Irondequoit) announced passage of legislation (A.7532A/S.5712A) that will ensure parents have the support and resources they need to care for a chronically ill or disabled adult child. The measure will expand current language to include parents among those who qualify to provide personal care services for an eligible individual under the Consumer Directed Personal Assistance Program (CDPAP).
“There are many special needs children who live with their parents after reaching adulthood,” said Senator Felder. “These parents are often presented with a significant dilemma. Often, in order to help with household expenses, a parent must work outside the home, while a personal assistant cares for their adult child’s needs. These personal assistants often don’t provide the same level of nurturing care that a parent can give their child.”
“I thank Senator Felder, my colleagues in the Assembly and the many advocates who came together to help pass this important legislation,” said Assemblyman Morelle. “Expanding the CDPAP is a common sense solution that will equip families with the resources and peace of mind they need to care for a loved one without risk to their financial stability.”
CDPAP is a state administered program that provides eligible participants with the option of self-managing their care alone or with the assistance of a designated responsible adult representative. The program is designed to keep costs down and provide eligible individuals with the chance to maintain quality care in their family homes, avoiding more costly residential placements. Under current rules, individuals may receive in-home CDPAP compensated care services from a personal assistant or a family member, however a spouse, parent, or designated representative is excluded from providing CDPAP compensated care.
In Rochester, Sarah Behan is a 32 year old CDPAP eligible individual living with CHARGE syndrome, a complex genetic condition, whose mother, Doris Behan, remains her principal caregiver. Currently, Doris must work outside the home. Because Sarah is eligible to participate in CDPAP she has received both in-home care from personal assistants, and part-time care from an adult daycare.
Unfortunately, Sarah’s personal assistants have not provided the dependable care required as her complex needs have become more significant. Due to this situation Doris has been forced to take time away from her job so that she can provide Sarah with the care she needs. This situation has placed unwanted financial strains on the Behan family and has led to tension in Doris’ workplace.
Ultimately, if Doris qualified to receive CDPAP compensation she would have the ability to stay home fulltime and provide Sarah with the appropriate care that she needs, at a cost that would not exceed that of a personal assistant.
The legislation is cost neutral as it is projected that there will not be an increase in care givers receiving compensation, but rather a shift from third party providers to parent providers. If enacted this legislation would take effect on April 1, 2016. The bill now goes to the Governor for his signature.