Caregiving affects all of society, regardless of age, race, ethnicity, or geography. Caregiving spans housing, food security, physical and mental health needs, transportation, employment support, and financial assistance and planning, making this work too broad to fit neatly within the scope of one state department. Reflecting the need for a crosscutting approach, Institute teams were all comprised of administrators from different state departments, while five of six states included one or more private partners in academia, direct service, and/or advocacy.

All institute states engaged multiple state agencies, and several of the state teams also included other partners such as university researchers and advocates such as AARP and Easter Seals. To participate in the Institute, all state teams included state policymakers from Medicaid as well as aging and disability.

• New York made specialized caregiver training videos available to all New Yorkers free of charge via Trualta, a private company that offers training to family caregivers via a proprietary online platform. The state used feedback from its working caregivers survey to identify online self-paced videos as an effective method of delivering training.
• Connecticut used new funding from the American Rescue Plan Act (ARPA), in particular the 10 percent Federal Medical Assistance Percentage (FMAP) increase, to expand support for family caregivers by embedding evidence-based supports, assistive technologies, and respite care. Through the state’s 1915 (c) ] Medicaid waivers, beneficiaries have access to family caregiver supports, such as caregiver training, assistive technologies, and respite care. Caregiver supports were also made available for Medicare Savings Program (MSP) participants, who are non-Medicaid eligible, which began in June 2022. MSP participant support and family caregiver support will be sustained through incorporating these supports into the state’s Medicaid budget (for Medicaid participants) and state general revenue (for MSP participants).
• Utah trained 18 dementia care trainers, which expanded dementia care in the state, especially in rural areas, through grant money from the Department of Aging and Adult Services.

Three states made caregiver assessments a priority. Assessing caregiver needs, which can be conducted through a variety of tools and programs, can help a state match caregivers to appropriate services, provide a benchmark by which to assess changes, and gather data that help state administrators tailor services to the needs of its caregivers.

• Connecticut created its own family caregiver assessment that will be incorporated into future delivery of Medicaid services as part of the state’s universal assessment.
• Illinois expanded support to AAAs to implement Tailored Caregiver Assessment and Referral (TCARE) — a commercially developed, evidence-based tool to assess family caregiver needs — that has been used by multiple states.
• New York piloted a program to evaluate potential use of TCARE throughout the state. Preliminary data suggested that assessed caregivers reported reductions in depression.

Connecticut’s goals for the Institute were to improve coordination between caregiver resources and supports across state and local agencies, as well as D-SNPs, and to increase timely access to family caregiver information and services. Connecticut’s policy approaches included organizing two virtual roundtables with D-SNPs, the Connecticut Department of Social Services, the Department of Aging and Disability Services, the Connecticut Paid Leave Authority, and AAAs in the state. Through these roundtables, Connecticut developed working agreements with D-SNPs around family caregiver supports. A key challenge identified in the roundtables was data sharing. Connecticut addressed this challenge by requiring D-SNPs to enroll in the state’s health information exchange (HIE). Connecticut also incorporated a value-based system into its HIE to include member goals, including goals related to caregiving. Connecticut was also able to use ARPA 10 percent FMAP increase funding to build and sustain Medicaid coverage of family caregiver supports. All of Connecticut’s Medicaid 1915(c) waivers will now provide coverage of family caregiver supports, such as assistive technologies and respite care. Caregiver supports were also made available for Medicare Savings Program participants, who are non-Medicaid eligible, which began in June 2022, through state general revenue. Connecticut also has future plans to expand Medicaid coverage for family caregiver assessment and to build future connections with the Paid Leave Authority.

Delaware’s work through the Institute involved contracting with Wilder Research — a nonprofit, independent research unit within the Amherst H. Wilder Foundation — to convene diverse caregiver focus groups to better understand their needs. These focus groups included LGBTQ caregivers, male caregivers, Asian American and Pacific Islander caregivers, rural caregivers, and caregivers from communities of color. Through the focus groups, Delaware learned about three main themes that affected caregivers in the state: the financial impacts of caregiving, the need to more easily be able to find information, and the need to be able to find the right services. Caregivers also highlighted issues around training aides for special caregiving conditions such as dementia.

Delaware’s next steps include:

• Developing a caregiver campaign to help increase awareness of the concept of caregiving and help people to self-identify as a caregiver
• Hiring a dementia and caregiver coordinator within the Department of Health and Human Services
• Continuing training of case managers at the Delaware aging and disability resource center on caregiver supports
• Considering recommendations from Delaware’s Aging in Place Working Group, a body comprised of legislators, state health officials, members of advocacy organizations, and members of the public collaborating to make policy recommendations that promote aging in place, and considering how these recommendations can overlap with the focus groups’ feedback
• With the Medicaid agency, examining options for incorporating Medicaid coverage of caregiving supports as part of the state’s ARPA home and community-based services plan

Delaware is recruiting for the Delaware Action Network for Caregivers, incorporating nontraditional partners. When finalized, the Delaware Action Network for Caregivers will focus on the advocacy and policy goals for family caregivers in Delaware and will explore findings in the focus group report. The Division of Medicaid and Medical Assistance plans to use the focus group report and recommendations to better identify how existing policy and supports assist caregivers and what supports should be added.

In partnership with the Administration for Community Living’s National Center on Advancing Person-Centered Practices and Systems, Delaware also plans to examine how to ensure equity, inclusion, and cultural competencies are incorporated into programs, services, and systems that impact family caregivers. Delaware will use the focus group report to examine how National Family Caregiver Support Program (NFCSP) funding is currently used and ways to use funding more efficiently.

Illinois entered the Institute with the primary goal of expanding the use of TCARE, a private, proprietary caregiver assessment tool, to all interested AAAs in the state. During the Institute, the Illinois team facilitated two discussions with AAAs, allowing those that have implemented TCARE to share information with those that had not. Illinois used these discussions to better understand AAAs’ interest and concerns about adopting TCARE, finding that along with license costs, administrative barriers posed significant challenges to AAAs in adopting TCARE. As a result of these discussions, Illinois awarded funding and administrative support to four AAAs to purchase TCARE licenses and begin caregiver assessments. Illinois intends to use the data from caregiver assessments to shape programming in the future.

Illinois has also created brochures, primarily used by AAAs, that show caregivers the available supports and assessments offered in the state. These brochures can be customized for each AAA and have been translated into additional languages. Illinois created the brochure with guidance from NASHP, which provided examples from other states. The brochures will help caregivers across the state utilize services.

Maryland’s work in the Institute focused on promoting currently available resources and raising awareness through outreach and promotional content. Maryland developed videos highlighting caregiver resources and supports from multiple agencies and a caregiver awareness video highlighting a caregiver story. Maryland also collaborated with the assistive technology program to develop three webinars to support caregivers, create fact sheets to accompany the webinars, and purchase assistive technology equipment for the state’s loan library.

The state’s Developmental Disabilities Administration (DDA) leads the Community of Practice for Supporting Families. This leadership team formed a subcommittee to focus on aging caregivers of adults with intellectual and developmental disabilities (I/DD), and is discussing the possibility of surveying aging caregivers across the state to understand their unique challenges. DDA recently partnered with Maryland’s Department of Aging (DOA) to identify previously unknown-to-the-administration aging caregivers, exchange data, and provide training to the AAAs on DDA’s services.

Maryland’s next steps include disseminating the videos with four sister agencies, disseminating revised plain-language fact sheets on 11 Medicaid waivers and state plan options, and continuing to work with DOA to identify and support I/DD adults and their aging caregivers. Maryland is in the process of developing a survey with population-specific questions to gather data about caregiver prevalence and needs and to triage survey respondents to relevant resources in real time.

Maryland’s work is supported by the Maryland Commission on Caregiving, a commission created by law with members appointed by the governor. The Commission consists of a group of family caregivers, experts, advocates, and legislators supported by the Maryland Department of Human Services in studying caregiver supports and assisting the state in implementing caregiver policies and programs. The Caregiver Commission webpage will be updated to reflect the resources developed through participation in the Institute.

New York’s Institute goals included providing better support to family caregivers in the workplace and piloting family caregiver assessments. The New York team launched a survey to employed family caregivers in the state. The survey was shared widely with employers throughout the state because of cooperation with industry organizations, state officials, and private partners. The survey received valuable data, and Greg Olsen, the acting director of the state office for the aging, presented the team’s work before the RAISE Family Caregiving Advisory Council. Speaking before the RAISE Council, he noted that this initiative itself did not cost the state any money, only effort, and therefore could be replicated by any state committed to supporting family caregivers. New York hopes to use this data to understand what services are lacking and what steps the state could take to increase utilization of caregiver supports.

Additionally, New York piloted TCARE, a proprietary family caregiver assessment. This pilot program assessed 101 caregivers and showed promising results around lower caregiver depression. State officials decided to continue the pilot for another year due to COVID-19-related challenges to collecting data. New York also made training videos available to caregivers free of charge through Trualta, a private platform that offers caregiving training for family caregivers. New York will continue to work on other caregiver supports, including exploring ways to include a caregiver training module among the state’s mandatory employment trainings that would help state employees self-identify as caregivers.

The Utah team used the Institute as an opportunity to bolster supports for caregivers of individuals with dementia and to enhance Medicaid’s capacity to support caregivers. Utah created a program funded by the Utah Legislature and grant funding through the Department of Aging and Adult Services to reimburse AAAs for dementia training efforts, supporting trainings in both English and Spanish. Utah also used the grant money to train 18 new dementia trainers and purchase materials for state dementia programming, which has been especially beneficial to rural areas.

Utah’s approach has emphasized cross-agency and cross-sector collaboration. The Utah Department of Human Services and Utah Medicaid have worked together to assess what staffing considerations Medicaid needed to better serve family caregivers. Shortly before the start of the Institute, the Utah Legislature passed legislation allowing spousal caregivers to be paid by Medicaid for providing extraordinary care. The Utah team discussed resources and trainings that would help the state implement this law.

Utah also put an emphasis on supporting tribal communities and met with the Utah Indian Health Advisory Board to obtain permission to provide dementia training to tribal communities. Though those plans are currently delayed due to the COVID-19 pandemic, Utah will proceed with these plans when conditions permit.