Starting in April of 2016, the Social Services law will be amended in NY State to allow for parents of their adult child to be paid under the Consumer Directed Personal Assistance Program (CDPAP) , as long as the parent is not also named as the designated representative. This is a program where the consumer, i.e., the individual with the disability, can hire anyone he or she chooses.
The CDPAP is a statewide Medicaid program that provides an alternative way of receiving home care services, where the consumer has more control over who provides their care and how it is provided. Rather than assigning a home care vendor or agency that controls selection, training, and scheduling of aides, the “consumer” or the family member, friend or guardian directing his/her care performs all these functions usually done by a vendor.
The change was signed into law by Governor Cuomo on November 20, 2015 which amends the Social Services Law §365-f, subd. 3, L. 2015 Ch. 511, enacting Senate bill S05712-A proposed by Senator Simcha Felder. State regulations now prohibit only the spouse or parent from being hired as the CDPAP aide, but allow a son or daughter or any other family member, provided the family member does “…not reside with the consumer or … who resides with the consumer because the amount of care the consumer requires makes such relative’s presence necessary….”
The aide need not be ‘certified’ as training is done by the consumer and family. However, CDPAP aides may perform skilled care that otherwise only be performed when a person cannot self-administer, such as suctioning tracheotomies, insulin injections, administration of oxygen and medications.
What’s all this mean for families? Many parents of developmentally disabled children are stressed to their maximum abilities when they have a child who requires 24/7 care. If there are two parents in the home, they often work opposite hours of one another in order to be sure their disabled child is cared for in their best interest. They do this in place of a group home, as they want their child home with them for as long as possible. After all most are happiest living with their parents. While the parents are very willing to do this for their children many find that by the time their child has reached the age of 21 and they are no longer in a school setting, they are the full-time caregivers for their now adult children. Where there were financial strains prior to the child becoming adult, they now find themselves bankrupt and on assistance programs. At planning meetings, advocates often hear from parents the need to work to support their family, yet they are staying home unpaid in place of a professional caregiver. There just aren’t enough caregivers to go around. The solution for several states since 2011 has been to pay the parents; however, the Home and Community Based Medicaid Waiver program in NY has allowed for everyone in the family except the parents to be paid.
Parents will need to call their local Consumer Director Personal Assistance Program agency for their county. A good place to start is the Department of Health who contracts with the fiscal as the aide is not an employee of a home care agency, but is instead an independent contractor, who is paid wages and benefits by a “fiscal intermediary,” an entity that contracts with either the county or a managed care plan to provide services authorized by that county or managed care plan. It is the fiscal intermediary that pays the aide wages and benefits.
“This is wonderful news for families all across New York State. There is no one who understands the complex needs and challenges of a child with a disability better than a parent,” said Assemblyman Joe Morelle (D-Irondequoit), who co-sponsored the bill.