Family Caregivers

A study has recently been published that makes the case for paid family caregiving. In other words, as so often happens, a study has come out that backs up what we already know: Family caregivers do critical work that keeps many parents out of the workforce and for which they need to be compensated. Furthermore, during a workforce crisis, such as the one we’re in now, paying family caregivers could help balance out that shortage.

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The study, while not directly tied to children with intellectual and developmental disabilities (I/DD), found that paid family caregivers provided certified nursing assistant-level care (CNA) with a greater employee retention compared with non-family CNA caregivers. The children all received CNA care through Colorado’s Medicaid paid family caregiving program between 2017-2019 by a home healthcare agency.

The study explains that in Colorado (and, as we know, in New York), a shortage of home healthcare workers is reducing the care available. “This mismatch of supply and demand can cause families … to face financial hardship when their parents leave or reduce work to address their children’s intensive medical needs at home.”

To read more, check out the study, “Paying Family Medical Caregivers for Children’s Home Healthcare in Colorado: A Working Medicaid Model,” in The Journal of Pediatrics

Unfortunately, very few programs pay family members or friends on a regular basis to provide care for children with I/DD. (A look at New York’s program is below.) There does seem to be some movement, however, on a state-by-state basis. Family caregivers in Maine became eligible in October to receive grants of up to $2,000, the latest state program aimed at supporting the chronically overworked population, according to a report in Barron’s.

Some states offer paid family and medical leave, albeit a short-term solution, while New Mexico has applied to the Centers for Medicare and Medicaid Services for a waiver that would allow the state to use some federal funds to compensate family caregivers and legal guardians serving as caregivers, Barron’s reports.

Caregiving and Stress

We all know that taking care of children with I/DD results in sometimes unbearable levels of stress. You have to learn about the disability, research and locate resources, advocate for your child every step of the way, often fighting for services with the very institutions designed to help, pay for special interventions and activities, and so much more. Then, on top of all that, are the emotional and physical demands of day-to-day caregiving.

A 2019 study out of the University of Connecticut notes that compared to non-caregivers, family caregivers are at increased risk for adverse physical and psychological health outcomes related to chronic stress.

And what do most of the well-meaning articles and experts tell you to do? Manage that stress! Find a parenting group, take a deep breath, make some me-time. Nowhere on those lists is how to get the needed compensation to afford the services needed and to pay the bills.

New York’s CDPAP Program

New York does have a paid caregiving program, called CDPAP, or the Consumer Directed Personal Assistance Program. The Medicaid program allows beneficiaries to hire their family members and friends for caregiving services. There are requirements and restrictions, some big ones, of course, so start out by going to this New York State link to find out more.

Here are some key points:

  • The Medicaid program provides services to chronically ill or disabled individuals who have a medical need for help with activities of daily living (ADLs) or skilled nursing services.
  • Services can include any of the services provided by a personal care aide (home attendant), home health aide, or nurse.
  • Recipients have flexibility and freedom in choosing their caregivers.
  • The consumer or the person acting on the consumer´s behalf (such as the parent of a disabled or chronically ill child) assumes full responsibility for hiring, training, supervising, and – if need be – terminating the employment of persons providing the services.

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