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Scaling Services to Meet the New Demands of a Changing Family Caregiver Demographic

July 23, 2019

California is set to see a rapid increase in older adults over the next decade when 20 percent of the population will be over age 65. This population – and their family caregivers – will be more diverse than at any other time in the state’s history. The estimated 4.5 million unpaid family members are the largest long-term workforce caring for older and disabled adults. California needs to expand support to family caregivers so adults needing assistance can remain in the community and family caregivers can get the services they need to work, care and thrive.

The California Caregiver Resource Center (CRC) system supporting unpaid family caregivers requested and received a budget increase of $30M in FY2019-20 – $10M per year – over the next 3 years to expand and retool the system to recognize the changing demographics of California family caregivers and the complexity of care needed by their family members. On an annual basis, the total CRC appropriation will be $14,918,000.

The Caregiver Resource Centers have a broad reach across age, income, and diagnosis of the care recipient to meet caregiving families where ever they are in their caregiving continuum. Established in this way, overlooked middle-income families who struggle to stay in the workforce and provide care are part of the charge of the CRCs. Family caregivers are getting younger, more diverse and with the majority employed–as noted in the Emerging Generation of Family Caregivers report by AARP–about 1 in 4 Caregivers is a Millennial in the U.S. Less than 20% are over the age of 65. The CRCs need to shift service delivery to reflect these changes and bring services directly to caregivers. The CRC’s will deliver a hybrid model of in- person services and smart use of agile technology to scale and deliver data- informed services to family caregivers in their homes and workplaces.

The CRC’s will take statewide an existing technology platform and consumer education system developed by Family Caregiver Alliance that is already in use in the Bay Area and Los Angeles. The platform provides a HIPAA-compliant electronic client record system, service tracking, consumer educational print and video materials in multiple languages, a teaching platform, telehealth capabilities, and a family caregiver client information and service dashboard with a secure messaging system. Using an updated caregiver assessment, investigation is already underway on how to predict risk for elder abuse, for serious illness care and for social isolation.

Data generated can be used in service coordination and planning with health and social service systems, to develop new or adapt current services for employed and diverse families and to benchmark meaningful outcomes. All staff will be trained on the revised caregiver assessment and service model as well as use of digital platform and telehealth technologies.

Currently, explicit caregiver support services in the state serve less than 5% of family caregivers. With additional statewide funding the staff in CRC’s can begin to address the changing context:

  • Over 80% of caregivers are under the age of 65
  • Over half of caregivers are in the workforce and average 20+ hours of assistance per week
  • An estimated 50% are providing complex care
  • Over 80% of adults over 65 are not eligible for MediCal HCBS
  • Two-thirds of caregivers are at risk for social isolation and strain
  • Half of caregivers receive no assistance with care from family, friends or services
  • Caregivers younger than 65 are more diverse, more likely to be in the workforce and have children still at home

The CRCs will work towards doubling and tripling the numbers of caregivers who will receive:

  • information and education during intake or information assistance calls,
  • provide care navigation and consultation to new and returning families with critical concerns,
  • uniform assessment of the key elements of care planning, direct care assistance and self-care in order to address the complex care of the adult needing assistance,
  • provide evidence-based interventions to decrease strain and increase competencies,
  • provide consumer-directed short-term respite.

Overall the goal is to improve and refine data capturing capabilities to track caregiver and care receiver needs and service usage providing data that can demonstrate social impact, improve quality and aid in planning. In order to reach younger, diverse, employed caregivers, the system will use a variety of technology platforms to bring services into the home to make access easier for families. Staff will be trained on universal assessment, risk assessment, and best practice care navigation with interventions. In addition, staff will be trained on the e-record platform administration, telehealth, online instruction and social media marketing to younger, diverse caregivers.

This pilot runs from July 1, 2019 to June 30, 2022.