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The Payment Paradox: Government Sponsorship of Informal Caregiving

Updated: Apr 26, 2023

We invite you to read and comment upon the first entry to our serial blog, aptly entitled, PARTNERSHIP PERSPECTIVES. As you might expect, our blog will focus on issues associated with the link between ageism and caregiving, in its many aspects.

The first of these offerings, "The Payment Paradox: Government Sponsorship of Informal Caregiving" provides insight into the complexities surrounding government support for self-directed care, particularly in relation to the Consumer Directed Personal Assistance Program (CDPAP) in New York State. Although the issues have universal relevance.

This particular issue has become a rallying point for our initial advocacy activities, with the purpose of improving both the morale and task performance of family caregivers, while also offering avenues for certification and empowerment of family members who perform professional functions, without the advantage of proper preparation or societal acknowledgment.

We aspire not only to bring caregiving into the general mindset, but to tackle the issues — one step at a time! The Payment Paradox blog offers you a look into our first Partnership Perspective on the need for training, psycho-education and certification of family caregivers.



States across the US are offering payment to family caregivers under Medicaid. One example of this developing trend is represented by the New York State Medicaid Consumer Directed Personal Assistance Progam (CDPAP). Although, we are using New York State as an example, the issues we raise are relevant to all government sponsored self-directed care programs.


The advancement of this payment option is predicated on the escalating personal care/medical care coordination requirements of family caregivers.


CBS reported that the US was most likely facing a “tripledemic” health crisis amid (1) increasing shortages of qualified health care workers; (2) Continued threats of Covid 19 and the flu; and (3) a rapidly emerging virus called respiratory syncytial virus (RSV) that had been surging through the nation. (Megan Cerullo, October, 25, 2022). Even though the RSV surge has peaked and the flu is receding, Covid rates are up again, signaling no end to the growing, though perhaps cyclical, demand for care from family caregivers as well as formal caregivers.


There is a general consensus that the need for family caregiving is only going to grow with the reversing of the age pyramid and the greater relative population growth among older cohorts compared to younger age cohorts. Also, the millennial population is experiencing an uptick in births, paving the way for a resurgence of issues associated with being a sandwich generation. Just when their parents may need them more, so too will increase the demand for their attention from their children.


There is also a general consensus that family caregivers are ill prepared for the multi-task role of family caregiver to aging and health-challenged individuals under their supervision. HHS and the AARP Public Policy Institute, among other institutions, have acknowledged not only the need of family caregivers for support, including emotional as well as financial; but, also have emphasized the need for training. That goes for all income groups and all family caregivers!


The contradictions surrounding informal versus formal caregiving abound. These contradictions are at the root of what we have labeled, “THE PAYMENT PARADOX.”


THE PAYMENT PARADOX: WHAT IS THAT ALL ABOUT?


  1. Although home health aides need to be certified in NY for limited scope of care responsibilities, CDPAP does not require any training for these informal caregivers hired and directed by eligible consumers.

  2. The scope of responsibilities of family caregivers exceeds that of certified home health aides; and yet, there is no training required of them.

  3. NY State uses fiscal intermediaries, who may assist with budgeting, to pay consumers, and that is the extent of any regulatory influence.


WHY IS THE STATE BEING SO LOOSE ABOUT THIS PROCESS?


It doesn’t take much stretch of the imagination to comprehend the connection between projected shortages in home health aides, the relatively lower costs associated with home delivered care, and the need to incentivize family caregiving.


Nevertheless, despite the regulatory issues, the major issues associated with the lack of training and credentialing of informal caregivers have as much to do with the burden of caregiving as with the need for accountability. Informal caregivers are increasingly susceptible to burnout, may suffer from anxiety and depression; and, also very often have to sacrifice careers and other personal ambitions in order to meet the growing demand for their services. Training and psycho-education focused on the needs of the caregiver as much as the care recipient would provide much needed support to a greatly neglected group of essential workers.


ACTIONABLE ITEMS


We not only need to address the need for training and psycho-education for family caregivers, we need to address the issue of certification of family caregivers receiving government financial support.


We do not see credentialing as a punitive measure. Rather, we view this action as a form of empowerment.


One example of an initiative that confirms the significance of credentialing is a matching grant that enables the New York State Caregiving Respite Coalition (NYSCRC) to receive federal funding from AmeriCorps for a demonstration project that will strengthen respite support for caregivers across the age and disability spectrum. The project includes the opportunity for volunteers to transition from unpaid to paid respite professionals through a training and credentialing process, illustrating the advantages of certification that could also accrue to the family caregiver, who could become eligible for recruitment as a caregiving professional. Clearly, this is a win-win for a home care system bridled by employment shortages. Measures such as this can help avoid nursing home placement, which among other things is a more expensive government option.


Caregiving is work and should be appropriately acknowledged. Not only will credentialing bring more status to the family caregiving position; but will also reinforce the importance of the work provided by certified home health aides and other home personnel – who largely fall under the RADAR OF RECOGNITION.

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7 Comments


Ilene Nathanson
Ilene Nathanson
Apr 04, 2023

Loretta: You identify one trend of children moving in with parents.. There is also a reverse trend of parents moving in with children which is only expected to grow with increasing dependency of older adults on their children as a result of escalating health costs and living expenses and insufficient personal resources.

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Loretta Bangs
Loretta Bangs
Apr 04, 2023

Great Article in the NYT's last week by Jaeah Lee (3/28/23).

"The Agony of Putting Your LIfe on Hold to Care for Your Parents."

Hits all the points being discussed.

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Ilene Nathanson
Ilene Nathanson
Apr 03, 2023

We envision an approach to training or preferably psycho-education that is client centered and experiential. The old adage of "starting where the client is" applies. We can foresee utilizing this training as a laboratory for students in a variety of professional fields; and thus not only benefiting the caregiver, but also informing the education of a new breed of professionals with enhanced understanding of the challenges of home based care. We need a new model for educating (and certifying) a new population of family caregivers, while providing the emotional support required to promote a more satisfying and successful outcome for themselves as well as those under their care; and we look forward to furthering these objectives.

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Deidre Edwards
Deidre Edwards
Apr 04, 2023
Replying to

How right you are, Ilene. The home care environment is yet another break-away specialty with unique challenges and approaches that deserves curriculum tailored to those specific needs.

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Loretta Bangs
Loretta Bangs
Apr 02, 2023

I live in an area of the South where the number of residents who are retired is a large part of the population. I regularly meet people who have left a job/career in another part of the country to come care for their parents. They are primarily supported by their parents income while here caring for them. More recently some have come, being able to continue their work remotely, but this is not the norm. I think this is going to be an ongoing issue with resources needed to assist these caregivers. Thanks for starting the conversation.

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Deidre Edwards
Deidre Edwards
Apr 01, 2023

I was a Nursing Home Administrator in the era of getting our nurse aides in California certified. An entire bureaucracy had to be set up to "convert" all levels of current aides to meet minimum standards of certification. Our facility paid for the in-house training and the corporation was possibly reimbursed by the government (I don't know). Then the certification curriculum was offered in high schools and colleges. Perfectly fine and good.


I have to wonder what the process of certifying family members would look like given the constraints of their own employment, demands of their own family time, and caregiving duties. If the family caregivers are going to be compensated for their caregiving efforts, how are they going to…


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