By Ken Genewick, Senior Program Officer for Caregiving
At the Health Foundation for Western & Central New York, a key component of our strategy to achieve health equity is supporting family caregivers of older adults. Family caregivers are a critically important part of their loved one’s care, and this role often brings joyful and rewarding moments and the strengthening of family relationships. However, caregivers also often face a wide array of challenges ranging from physical and emotional stress to financial strain.
According to a 2020 study conducted by the American Association of Retired Persons (AARP) and the National Alliance for Caregiving, more than 53 million family caregivers provide most of the support for older adults and people with disabilities to prosper in the community. Additionally, at least 2.7 million grandparents carry the primary responsibility of caring for children whose parents cannot. Overall, family caregivers form the very foundation of our system of long-term care.
While people from all demographics serve as family caregivers, the strain of caregiving often has a disproportionate impact on caregivers who are BIPOC (Black, Indigenous, or people of color) due to socioeconomic inequities, bias in medical care and access, and other inadequate systemic support. Family caregivers deserve access to respite and resources that can reduce some of the challenges of caregiving.
National Strategy to Support Family Caregivers
In 2022, the Health Foundation was grateful to see the National Strategy to Support Family Caregivers announced by the Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Council and the Advisory Council to Support Grandparents Raising Grandchildren (SGRG). The Strategy was developed with generous financial, technical, and practical assistance support from The John A. Hartford Foundation, the National Academy of State Health Policy, Community Catalyst, The LeadingAge LTSS Center at the University of Massachusetts at Boston, and the National Alliance for Caregiving.
Regardless of how a person becomes a family caregiver, they deserve to be recognized, assisted, included, supported, and engaged. This notion is what built the framework of the National Strategy (based on the advisory councils’ 2021 reports to Congress), which aims to:
- Align federal, state, tribal, local, and other stakeholder responses around a set of goals and outcomes that are informed by thoughtful recommendations.
- Foster collaborations within and across stakeholder groups.
- Optimize existing family caregiver support efforts by reducing redundancy, improving information sharing, and infusing best practices systemwide.
- Prioritize efforts to advance equity for unserved and underserved populations of caregivers.
- Ensure that all efforts to uplift caregivers are person- and family-centered, trauma informed, and culturally competent.
The strategy includes four key principles—cross-cutting considerations for family caregiver support. Our team agrees on the importance of these four principles, and we are proud to see alignment with these principles and the work of the Health Foundation.
Principle 1: Placing the Family and Person at the Center of All Interactions
Person- and family-centered care prioritizes the needs of the person or family receiving services. This approach allows care providers the opportunity to more deeply understand what matters most to the people they provide care for—leading to better outcomes for all involved. The National Strategy highlights this approach as key to ensuring the specific needs of family caregivers and their loved ones are at the center of any effort to support them.
The Health Foundation shares this approach in Exhale, the Family Caregiver Initiative. This partnership between the Health Foundation, the Ralph C. Wilson, Jr. Foundation, and the Ann Arbor Area Community Foundation (MI), managed by The Philanthropic Initiative, offers an innovative approach to respite that benefits caregiver and loved ones by using community-driven creative problem-solving. Grantees partner directly to center the needs of family caregivers in the development and planning of pilot programs in both western New York and Washtenaw County, Michigan. This human-centered approach ensures the specific needs of different caregiver demographics can be identified and addressed effectively.
Exhale recently announced 12 new grantees involving a total of 58 partner organizations across western New York and Washtenaw County, Michigan. This round of project initiatives includes the establishment of neighborhood respite centers, care support to improve healthy living with chore support, home modifications, mobile respite care, a “mystery trip” program, and much more. These initiatives are scheduled to launch in early 2023.
Related reading: Why should philanthropy invest in family caregiving? by The Philanthropic Initiative.
Principle 2: Advancing Diversity, Equity, Inclusion, and Accessibility for Family Caregivers in Underserved Communities
As the National Strategy states, caregiving affects every family, but it doesn’t affect them all equally. Implicit bias and under-investment in the institutions that serve caregivers have often left segments of the population with less support. People with disabilities, for example, face greater health disparities, less preventative screening, and societal misconceptions about their needs.
Older adults in the Hispanic and Black communities are also more likely to have more chronic conditions and less consistent access to quality care. These complex issues compound the challenges their caregivers face and underscore why it is so important for the National Strategy to apply a lens of diversity, equity, inclusion, and accessibility.
Exhale, the Family Caregiver Initiative also includes a concerted effort to reach, attract, and work with organizations in diverse communities across the western New York region to provide better means of accessibility to caregivers and their loved ones.
The New York & Michigan Solutions Journalism Collaborative (NYMI SOJO) of Solutions Journalism Network is a group of news, academic, and community organizations pooling time, talent, and resources to cover chronic problems with a solutions lens, and is the first interstate collaborative of journalists focused on caregiving in the western New York and southeast Michigan regions.
Supported in partnership with the Ralph C. Wilson, Jr. Foundation, NYMI SOJO has established and implemented Finding Solutions: Connecting with Elusive Caregivers, an initiative that heavily focuses on developing relationships among and telling real, relatable stories to and about caregivers in underserved communities to bring more attention and greatly needed assistance to family caregivers of older adults. View a conversation with Karen Magnuson, Project Director for New York and Michigan Solutions Journalism Collaborative, on our blog.
Principle 3: Elevating Direct Care Workers as Family Caregiver Partners
Ensuring family caregivers are supported and healthy requires a strong, well-trained, well-resourced direct care workforce. These professionals provide essential care and support services that family caregivers and their loved ones need. But, due to a number of factors, including the generally low pay and high stress of these positions, regions across the country—including right here in New York—are facing a critical shortage of direct care workers. The Health Foundation is partnering on several initiatives that help build the capacity of the direct care workforce.
Health Workforce Collaborative: The Health Foundation partnered with the Health Workforce Collaborative (HWC) to support their work on these issues. The HWC team believes that a community-focused infrastructure of health care worker development and support is essential to ensuring we can continue to meet the needs of those who require this type of care, including many older adults.
The Collaborative helps address these issues through a resource called the Health Workforce Hub, a digital platform which brings together key health workforce stakeholders. The Hub offers valuable health workforce development information, tools, and resources such as a career center, a training center, a networking center, and a marketplace where a host of programs, products, and services are posted for review and engagement by healthcare employers. The essential workforce data collected through the project’s efforts serve to guide coordinated workforce planning and facilitate joint advocacy. The Collaborative also conducts extensive outreach and incorporates existing workforce efforts in western and central New York counties.
New York State Caregiving Respite Coalition: The Health Foundation also is contributing to a matching grant that enables the New York State Caregiving Respite Coalition (NYSCRC) to receive federal funding from AmeriCorps for a three-year Senior Demonstration project. This six-county regional approach will build and strengthen respite support for caregivers across the age and disability spectrum in the Central and Southern Tier regions of New York State, including Oneida, Herkimer, Cortland, and Tompkins counties. NYSCRC will develop and train 300 AmeriCorps Seniors to build and enhance community respite services in these counties.
They will partner with existing AmeriCorps Senior Corps programs in the remaining CNY counties to assist in program promotion and volunteer recruitment, providing the opportunity for these participants to enter the direct care workforce and receive respite care certification training to transition from unpaid volunteers to paid respite professionals. This federal project is being overseen by Lifespan of Greater Rochester.
Master Plan for Aging: We are excited that, on November 4, 2022, Gov. Kathy Hochul signed an executive order creating the state’s first ever Master Plan on Aging—an initiative that the Health Foundation has advocated for since 2021.
A Master Plan for Aging is a comprehensive roadmap for system-wide changes in how services are coordinated, delivered, and financed to better meet the needs of a state’s older adults and their families. Driven by data and rooted in the values of transparency and accountability, it can serve as an outcome-oriented blueprint for all sectors to promote healthy aging and prepare for future demographic changes. When implemented, this plan should help strengthen supports for family caregivers across the state.
Principle 4: Addressing Trauma and Its Impact on Families
According to the Jewish Federations of North America, as many as 90 percent of older adults have been exposed to a traumatic event in their lifetimes. Trauma can have long-term effects on the mental, emotional, and physical health of older adults and the people who care for them.
The National Strategy offers several recommendations on incorporating a trauma-informed lens into services for family caregivers, including ensuring that outreach messages and service environments create a sense of safety, trust, and empowerment, and understanding that some interventions—such as home visits—may be seen as intrusive or triggering for those who have experienced trauma.
The Health Foundation is leading a series of conversations with care providers and those who serve family caregivers across western and central New York to support learning around trauma-informed care. This conversation will continue with a webinar, Supporting Family Caregivers of Older Adults with a History of Trauma on December 8 at 11 am, to discuss how caregivers of older adults in western and central New York can be supported in the wake of surviving trauma that can have a lasting effect on their mental and physical well-being. Register here to join us for this important conversation.
We thank all those who were involved in the development of the National Strategy to Support Family Caregivers, and we are glad to see many initiatives taking place across our regions that are aligned with the strategy’s core principles. Family caregivers play a pivotal role in the care of our loved ones and our society as a whole, and they deserve personalized, robust support services to help them.