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Family Caregiving Council Receives Public Input and Expertise to Create Recommendations

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The Family Caregiving Advisory Council held its third full council meeting on May 20 and 21, 2020, to hear presentations on key topic areas, including family leave, respite care, research and data, and an analysis of the input received from the Administration for Community Living’s (ACL) request for information. The council also refined its Driver Diagram to identify a set of recommendations to support family caregivers. A Driver Diagram is a visual display of a group’s philosophy on what “drives” or contributes to the fulfillment of a project goal. The Family Caregiving Advisory Council is developing a Driver Diagram as a consensus building tool to form the creation of the national strategy on family caregiving. 

Family Caregivers and COVID-19

The second council meeting began with remarks from ACL Administrator and Assistant Secretary for Aging Lance Robertson who thanked council members for their flexibility, resilience, and dedication during the COVID-19 pandemic, which has further demonstrated how critical it is to have the right supports in place for caregivers. Robertson also acknowledged: 

  • The $100 million of funding ACL received from the Coronavirus Aid, Relief, and Economic Security (CARES) Act and the Families First Coronavirus Response Act that it awarded to states to help strengthen the caregiver support program;
  • The progress to date on ACL’s Report to Congress; and
  • The continued engagement of federal partners in supporting this work

Public Input

Through a request for information process, the ACL accepted comments from the public on key questions related to the RAISE Act and family caregiving. The public comment period for the request for information closed on Feb. 7, 2020. 

Pamela Nadash, PhD, a professor at University of Massachusetts Boston, presented her team’s analysis of the input received from the ACL’s request for information to council members. The request generated 1,613 total responses, 75 percent of which were from individual family caregivers across the age spectrum and of varying racial and ethnic backgrounds with the remaining responses from organizations. The findings included:

  • Respondents requested additional supports for service planning, family-centered care, and respite services. 
  • Family caregivers were concerned about financial security; many cited the need for a flexible work environment, part-time options, and paid time off.
  • Respondents recommended payment for family caregivers, including in the form of tax benefits for purchasing supplies necessary to support their family caregiving.
  • Many respondents expressed the impact caregiving has on their own physical and mental health. 

Family Leave: Lynn Friss Feinberg with the AARP Public Policy Institute gave a presentation on the importance of family leave for employed family caregivers. Unlike previous generations, most (61 percent) family caregivers today work at a paying job. Family caregivers who stop working can face short- and long-term financial risks, including a loss of income, health insurance, Social Security and retirement benefits, and career opportunities. Council members discussed a variety of ways to support the financial security of family caregivers, including the provision of paid family leave, paid sick days, and family caregiver tax credits as well as prohibiting discrimination based on one’s family caregiver status among other protections. 

Respite: Jill Kagan with the ARCH National Respite Network gave a presentation on respite care, including the different types of respite and the importance of person- and family-centered respite options. The presentation also noted the pandemic’s effects on respite availability and provision. COVID-19 has necessitated non-traditional ways of providing respite, including online interactions or phone calls, with some states having designated respite providers as essential workers. The presentation provided information on the advantages of respite on family caregivers’ well-being and health and how respite can be most effective. Kagan offered suggestions on how to improve respite access and provision for the council’s discussion. 

Data and Research: Scott Beach, PhD, with the University of Pittsburgh gave a presentation on evidence-based family caregiver research and interventions, and Joe Caldwell, PhD, with Brandeis University gave a presentation on family caregiver data. 

Beach’s presentation included a broad overview of family caregiver intervention literature, and he noted gaps in the literature, such as the fact that the majority of caregiving intervention studies focused on older adult populations, particularly dementia caregivers. He highlighted the opportunity to study caregivers of individuals across the lifespan, caregivers of individuals with disabilities and special health needs, and underrepresented groups such as minority caregivers, rural caregivers, or LGBT caregivers. Additionally, less is known about cost-effectiveness and economic impacts of caregiving on family finances. A barrier to implementing interventions is translating interventions from randomized trials to real-world settings. What is known about effective interventions is that they must be multi-component and address both the pragmatic and the emotional elements of caregiving. 

Caldwell’s presentation stressed the need to collect family caregiver data and information in general, noting that most national surveys do not contain questions about family caregiving. Information about caregiver data collection at the state level was also noted. Caldwell provided suggestions on a potential set of core caregiving questions to consider, and also discussed the possibility of including questions in current, existing surveys. Additionally, he noted that programs such as Medicaid were another source of potential data. 

In the discussion, the Council discussed a number of considerations around caregiving data and research, including efforts around data collection from federal agencies and ways to explore the economic impacts of caregiving and evidence-based practices. 

Driver Diagram Discussion: The final part of the meeting was a council discussion on the Driver Diagram. The Council previously voted on a set of goals to include in the Driver Diagram at the February 2020 meeting. At the May meeting, the council worked on brainstorming strategies, actions, and recommendations to support family caregivers. 

Next Steps: The two-day meeting concluded with a recap of the day’s presentations and decisions on next steps. The council voted to hold all meetings as virtual meetings through the end of 2020 because of the pandemic. The council also voted to hold a full council meeting in July. ACL reviewed its next steps of working on stakeholder engagement and engagement with federal partners, along with plans to further support the council in developing the Driver Diagram. The council received information about focus group listening sessions for family caregivers occurring at the end of May and the beginning of June.

Webinar: Family Caregiving Policies and Innovations 

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State Policy Innovations to Support Family Caregivers

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As the country ages, states recognize the importance of caregivers and are developing new initiatives to support and sustain their critical role in helping relatives, friends, and neighbors age in place. The recent passage of the Recognize, Assist, Include, Support, and Engage Family Caregivers (RAISE) Act, a federal strategy to support family caregivers, brings new attention to this policy issue.

Family caregivers are an essential but uncompensated component of the country’s health care system. They provide nearly $470 billion in unpaid services each year, reducing the need for home health services and delaying the use of costly nursing home care. Medicare does not cover long-term services and supports, and few individuals have private coverage for these services. As a result, state Medicaid programs cover six out of 10 of the country’s nursing home residents and spend $95 billion per year on a broad array of home- and community-based services. States rely heavily on caregivers and the critical supports they provide to millions of older adults and individuals with disabilities.

The National Academy for State Health Policy (NASHP), with support from The John A. Hartford Foundation, convened a state officials-only roundtable at its 2019 annual conference in August to explore this issue in-depth. Policymakers highlighted several state efforts to assist family caregivers and shared how their states have offered additional flexibility, support, and resources to address caregiver needs.

Leveraging State Resources

Minnesota uses state funding strategically to provide services to older adults who would likely require Medicaid-funded nursing home care without some level of support services. The state’s Essential Community Supports program is made available to individuals whose needs do not meet the state’s nursing home level of care benchmark, but who require some assistance to remain in their homes and  communities. Based on individual assessments, recipients receive a coordinated set of services, which can include:

  • A personal emergency response system;
  • Homemaker services;
  • Caregiver support and education;
  • Home-delivered meals;
  • Community living assistance; and
  • Adult day services.

The program is part of Minnesota’s strategy to reach people early, provide less expensive services, and prevent or delay an individual’s need to spend down their assets in order to qualify for Medicaid.

Hawaii’s Kapuna Caregiver Program was reauthorized in 2018 and funded through appropriations of up to $1.5 million, or $210 per week per eligible participant. The program provides long-term services and supports, such as adult day care, transportation, chore services, respite care, and related supports to keep working caregivers employed. While not a means-tested program,  the state conducts a holistic assessment of the caregiver and care recipient. Allocated dollars are provided directly to service agencies to minimize administrative oversight. Moving forward, state policymakers will continue to review the program’s sustainability. During its first year of implementation, most program funds went to providing adult day care. In the future, state policymakers would like to explore other ways to support family caregivers using these very limited resources.

Mitigating the Financial Burden

Washington State passed the first-in-the-nation Long-Term Care Trust Act mandatory payroll premium housed in a state trust fund finances long-term services and supports for everyone who pays in and is employed in the state. Qualifying individuals become eligible to receive benefits when they need assistance with three or more activities of daily living, which Washington State defines as bathing, bed mobility, dressing, eating, and other similar activities. The state pays certified, licensed long-term services and support providers to deliver care. Qualified family members can also be paid for services through these agencies.

The trust fund covers $36,500 (adjusted with inflation) in long-term care benefits per individual over the course of the beneficiary’s lifetime. Based on the state’s actuarial analysis, Washington policymakers expect this amount will cover most individuals’ long-term needs. Funds may be used for a variety of purposes, including:

  • Paying professional aides;
  • Training and reimbursing family caregivers; and
  • Covering expenses of caregiving support, care coordination, respite, and similar supports.

Maximizing the Flexibility of Home- and Community-Based Services Waivers

Minnesota’s Elderly Waiver Program provides a range of supports for family caregivers, including respite, counseling and training, and the Family Memory Care model that offers coaching and other services to families taking care of an individual with dementia.

Washington’s 1115 waiver program supports a range of benefits designed to support caregivers so that individuals who need care can stay at home and in their communities. Its Medicaid Alternative Care program targets adults who may be eligible for Medicaid but are not currently accessing long-term support services, while its Tailored Supports for Older Adults program creates a new benefit for those at risk of needing Medicaid long-term care services in the future. Both programs offer information, training, and supports for caregivers, including respite options.

Investing in a Supportive Care Workforce

Several state officials highlighted the urgency of developing an adequate workforce to care for older adults, including the need to train and professionalize paid family caregivers. Under Washington’s Long-Term Care Trust Act, a “qualified family caregiver,” or a relative of an eligible care recipient who satisfies state law requirements for providers of long-term services and supports will be eligible to receive payment from the state for providing those services.

Given the central role states play as funders of long-term care, the development of a national strategy to support family caregivers creates opportunities for them, including policy strategies that can be implemented at the state level.

In the coming months, NASHP will be working closely with The John A. Hartford Foundation and the Administration for Community Living to launch the RAISE Family Caregiver Resource and Dissemination Center webpage. The webpage will serve as a national resource for state policymakers and other stakeholders interested in understanding the critical role of family caregivers and identifying policies and best practices to support them.

State Strategies to Meet the Needs of Young Children and Families Affected by the Opioid Crisis

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The opioid epidemic continues to have devastating consequences for children and families across the country, with growing social and financial implications for states. The National Academy for State Health Policy (NASHP), in partnership with the Alliance for Early Success, interviewed Kentucky, New Hampshire, and Virginia officials representing state Medicaid, child welfare, and behavioral health programs to explore how their child-serving agencies were responding to the opioid epidemic. This new report explores:

  • State strategies to support young children and families affected by the epidemic;
  • Available state and federal funding sources for these initiatives; and
  • Key considerations for states working to improve services and outcomes for this vulnerable population.

Read or download: State Strategies to Meet the Needs of Young Children and Families Affected by the Opioid Crisis

Flurry of Bills Targeting the Opioid Epidemic’s Impact on Families Reach Congress

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The country’s opioid crisis has had a devastating effect on women, children, and families, and continues to strain state health, foster care, and social service agency budgets. A flurry of bills has recently been introduced in Congress to prevent or reduce the effects of the opioid crisis and many directly impact families and children.
The bills provide key insights into Congressional efforts to help states tackle the opioid crisis. In the past month, the House passed the omnibus SUPPORT for Patients and Communities Act by a resounding vote of 396-14, and a number of other related bills have recently passed their committees. Additionally, the Senate Health, Education, Labor and Pensions (HELP) Committee advanced the Opioid Crisis Response Act of 2018. These bills support families and children affected by opioid use disorder (OUD) and are an early indication of what programs may win approval in the coming weeks. Two key approaches stand out:

  • Promotion of innovative, family-centered care models that serve women and infants together; and
  • A focus on data collection and research related to the needs and experiences of children and youth.

Innovative Care Models Promoted in the Proposed Legislation
Care delivery models that address the complex needs of families and children affected by opioid use are key to promoting recovery among parents and mitigating long-term impacts on children’s health.
The Senate’s Opioid Crisis Response Act of 2018 funds family-centered, residential treatment programs that serve women and infants together and provides grants and technical assistance to states to implement plans of safe care for substance-exposed infants.

  • The bill also authorizes a program to support substance use disorder (SUD) prevention and recovery services for children, adolescents, and young adults, and requires the US Department of Health and Human Services (HHS) to identify and disseminate best practices for serving this population in collaboration with the US Department of Education.
  • Additionally, it provides demonstration grants to better integrate mental health care into schools — an important delivery site of care for children. By integrating mental health services into schools, states can promote access to services and support for children affected by trauma, including parental opioid use.

The House SUPPORT for Patients and Communities Act would streamline services for pregnant and postpartum woman by enabling Medicaid financing of pregnancy-related services in SUD treatment facilities. It would also make it easier for Medicaid to finance community-based facilities where infants with neonatal abstinence syndrome could receive treatment along with their mothers. The bill also requires HHS to issue guidance and conduct studies to improve care for these populations.
Data collection and research into the opioid epidemic can shed light on the scope of the problem and opioid use trends, and they are critical for guiding policymaking and targeting effective interventions.

  • The SUPPORT for Patients and Communities Act requires the Surgeon General to submit a report to Congress on the public health effects of the rise of synthetic drug use among individuals age 12 to 18. States can use this information to guide prevention efforts and target services and supports to address synthetic drug use and its impact on adolescents’ health.
  • The Opioid Crisis Response Act supports data collection and research on prenatal substance misuse, including the long-term outcomes of children affected by neonatal abstinence syndrome. It also permits the Centers for Disease Control and Prevention to collect and report data on adverse childhood experiences. These data and research could inform state decisions about resource allocation for OUD prevention or treatment services for infants, children, and families.

Many of these and other bills have bipartisan support, but it remains to be seen if these or other bills will be enacted. The strategies proposed in these bills were also discussed at a recent meeting about SUD and families for state and local officials from Maine, Mississippi, and West Virginia hosted by the Association of State and Territorial Health Officials, the National Academy for State Health Policy (NASHP), the National Association of County & City Health Officials, and the National Conference of State Legislatures as part of a cooperative agreement with the Health Resources and Services Administration.
Developing services for infants, children, and families is already underway in states, and new innovations and planning will begin if these bills become law. To learn more about how states are working to meet the needs of women, children, and families affected by SUD, attend the following sessions at NASHP’s Annual State Health Policy Conference, Aug. 15-18, 2018 in Jacksonville, FL:

Stay tuned for two upcoming NASHP issue briefs and national webinars exploring this issue, scheduled for late summer and early fall.

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