State Policy Recommendations for Caregivers

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I had the pleasure of addressing the California Commission on Aging last week during their public hearing on “Celebrating Caregiving in California”. I was asked to provide the historical background on caregiving in my home state and look at the future in terms of policy directions. I would like to share some of these thoughts with you.

On the future of caregiver support, it may well be summed up in three words: integration, consumer-driven and outcomes.

Caregivers will be increasingly integrated into existing health and social service systems particularly if the care recipient has one or more chronic care conditions. Caregivers are a part of the health care reform efforts and will be seen as important care partners depending on the health issue and the values within the family system. As the main providers of long term assistance and support, caregivers will recognized as bridging the gaps between independence at home and formal services. How will this be done? By first identifying a caregiver and assessing the level of supports needed by that individual to improve the health and well-being of both the caregiver and care recipient. We will move towards a person and family-centered systems of care.

Let’s face facts: the baby boomer generation is currently the majority of informal caregivers and as such, we need to shift to generational norms and values reflecting this change. While there will always be a continuum of autonomy, it is safe to assume that this particular generation questions authority more frequently and desires more control over their life situations than earlier generations – at least for the next few decades.

This is a generation that is largely technology savvy and is educated about care choices. Currently this age cohort is using technology to manage the care of their parents or older relatives and we should expect this trend to continue. We should expect that consumer-driven choices will be a dominant direction of this group of caregivers.

The trend for health and social services is outcomes driven by data. There will be more demand for evidence and best practice interventions that deliver the desired outcomes particularly for publicly funded services. One of the most significant changes within health care reform is changing financial incentives for individual providers and hospitals from paying for procedures to payment for producing best outcomes for the patient population. In caregiver support, this will mean defining the goals depending on the care setting and situation, assessing for those goals and applying the right interventions.

As for policy recommendations at the state level:

Require a uniform caregiver assessment process within current Title IIIE programs and home and community based waiver programs (if a caregiver is present in the home) to assess the capacity for direct care and the psychosocial, health and support needs of the caregiver.

Develop a State-Specific Strategic Plan for Caregivers in partnership with health and social service systems across state departments, healthcare systems, community based service organizations, advocates, work and family organizations, research entities and consumers to identify the challenges, opportunities and system change strategies with yearly benchmarks for integrating family caregivers within systems of care.

Require applications for federal healthcare and home and community based service (HCBS) demonstrations reflect person and family-centered care and that caregiver assessment be included if appropriate.

Promote workplace friendly policies and practices with paid family leave, expanded FMLA, paid sick time and anti-discrimination policies for those in the workforce who are also juggling long term care demands.

I do understand the budget crisis facing states at this time. However, since resources are tight, it is all the more imperative that we integrate the largest long term care workforce in meaningful ways across health and social service systems. Personally I don’t believe in the old adage of “doing more with less”. But I do believe that we can work smarter and target better, those caregivers who are most at risk.


I worked for the State of Florida and was harrassed by my supervisor because I wanted to flex my time so I could attend a caregiver support group. I kept getting told I should put mom in a nursing home and not be bothered, and this was Vocational Rehabilitation. Mom is being discharged from Alz day care because they say she can not stand in the bathroom and she does not participate in activities. I was told they would get in trouble with the state. (Florida) Well, she can stand with assistance, yes she does not actively participate. So where does she fall? At home with me, I am unable to work and care for mom. Care would cost more than I would make. Mom liked the center, the head nurse didn't like her or me or something. Mom was/is under the ADI program. If I had to pay she would not have gone. She was rude. I told one of the bus drivers I thought she was nasty and she agreed with me. She must be moving up in the system by any means.