Approaches:

• Redeployment: Shifting funding from higher cost to lower-cost programs and services. Prior to redeployment, taking stock of what is available and what works or doesn’t work is important.
• Operating More Efficiently: Cutting costs that can be reinvested in expanding services.
• Reinvestment: Allocating funds that can be “saved” through redeployment, refinancing, or reductions in spending to new or alternative supports and services. This approach should be undertaken with a clear sense of goals and objectives for the new services and supports under consideration.
• Embedding Lifespan Respite Grant Activities into Ongoing State Efforts: State agencies may face economic uncertainty, staffing and leadership issues, and changing state policies and procedures. Rather than relying on new funding, some states embed the activities they developed as a result of their Lifespan Respite grants into ongoing sustainable state efforts.

Examples:

• State Lifespan Respite grantees collected respite provider or program lists or registries as part of needs assessment, environmental scan and/or ongoing provider recruitment efforts. To help improve administrative efficiency and streamline respite access for family caregivers, grantees used state or federal Lifespan Respite grant funds to develop or enhance online databases of respite providers and programs. A few states maintain these registries on government websites (AR, TX). To ensure sustainability, some states embedded their respite programs and resources on state respite coalition websites, Aging and Disability No Wrong Door System websites (see below), or the ARCH National Respite Locator Service (DC, NC, PA). Learn more and see list of state registries. 

• • The Arkansas Lifespan Respite Program houses a Lifespan Respite Search Locator (Registry) on the Arkansas Department of Human Services website. The registry includes in-home respite care providers who have completed free Respite Care Training offered by the agency or the UAMS-Schmieding Caregiver’s REST Training Program, and facility-based agencies that provide respite care
  • The New Mexico Caregivers Coalition built an online respite provider registry so that trained respite providers could be added to the state respite database. Illinois has a similar registry.
  • Wisconsin’s Respite Care Association developed a comprehensive registry of trained respite providers resulting in efficient data collection and communication allowing staff to focus more on program vs. administrative tasks.

• State Lifespan Respite grantees and partners are collaborating with their Aging and Disability Resource Centers (ADRCs) or No Wrong Door (NWD) Systems to increase access to respite services and providers. Embedding Lifespan Respite care services or information in these systems streamlines access for family caregivers and helps ensure programmatic sustainability. Learn more about No Wrong Door and Lifespan Respite Program collaboration.

• • The Montana Lifespan Respite Coalition maintains a searchable statewide resource database, including  respite providers and agencies, on its Aging and Disability Resource Center (ADRC) website.
  • The New York State Office for Aging (NYSOFA) expanded access to caregiver services through improved respite listings for all ages and disabilities in NY Connects that is part of their No Wrong Door System. This interagency directory provides consistent and comprehensive information on long-term services and supports (including respite).
  • The South Carolina Department on Aging (DOA) applied for and received a grant from the Administration for Community Living (ACL) with goals for improving the No Wrong Door (NWD) access system for Long Term Services and Supports (LTSS) in SC. This grant is being used to form a NWD governing body which includes Lifespan Respite partners and will lead the state toward less siloed LTSS services including respite.
  • The South Dakota Department of Human Services (SDDHS) created a brochure that provides information on how to access state and federal respite programs using the Dakota at Home (ADRC) Resource Directory database.

• Through Wisconsin’s Department of Health Services (WDHS) and the Respite Care Association of Wisconsin (RCAW), Lifespan Respite efforts were embedded in an ADRC expansion and enhancement project, as well as being closely integrated with the state's Alzheimer Family Caregiver Support Program and the National Family Caregiver Support Program (Title III-E). Lifespan Respite has been used effectively to reach families that may otherwise not qualify for other public programs.

• In recent years, more states increased the reach of Lifespan Respite grant funds through the use of self-directed respite vouchers, grants or subsidies to allow family caregivers to purchase their own planned or emergency respite services. See U.S. map of Voucher Programs. 

• • The New York State Office for the Aging (NYSOFA) expanded the reach of the Lifespan Respite Care Voucher Program by permitting Area Agencies on Aging (AAAs) to use National Family Caregiver Support Program funds to contract with the New York State Caregiving and Respite Coalition (NYSCRC) to administer respite vouchers or to administer their own programs. Learn more and see the Technical Assistance Memorandum: Implementing a Caregiver-Directed Respite Care Service Delivery Model under the NFCSP.
  • The Virginia Department for Aging and Rehabilitative Services (DARS) used multiple strategies to expand the impact of respite vouchers including 1) allowing caregivers to choose their provider, with the majority choosing individual providers over agency providers resulting in lower hourly costs; 2) reallocating respite voucher funds to another caregiver if the full funding is not used; 3) limiting state administration costs of the voucher program so that 80% of funding is used for voucher reimbursement; and 4) requesting DARS state funding from the Virginia legislature and Governor each year.

• Innovative voucher approaches have been implemented, including using a “Universal Respite Voucher” prioritization  tool  to provide respite to gap populations with greatest need, and to reduce bureaucratic red tape. Emergency respite needs are being similarly administered  through statewide emergency respite voucher programs  where families can select their own  providers (AL, AZ, IL, NE, NV, ND, SC).

• State Lifespan Respite grantees and state respite coalition partners developed  or  expanded less costly respite using volunteers, student respite providers, or partnered with faith communities to provide respite  (AL, MA, NY, SC, RI, TN).

• • The New York State Caregiving and Respite Coalition (NYSCRC) in collaboration with the New York State Office for the Aging (NYSOFA), funded mini-grants for community-and faith-based organizations to start volunteer respite programs. Many states have used this approach to start up or enhance community and faith-based respite programs. See State Lifespan Respite grantee minigrants tools.
  • The North Carolina Lifespan Respite grantee, the North Carolina Division of Aging and Adult Services, formed a North Carolina Statewide Volunteer Caregiver Respite Consortium, an initiative to bring together organizations and groups across the State that are operating volunteer respite programs for family caregivers. The purpose of the initiative is to facilitate information sharing among programs, support the expansion of existing programs, and support the creation of new programs across the State. The Center for Volunteer Caregiving (CVC) in Cary, NC, which led this effort, pledged ongoing support to administer and lead the consortium beyond the grant period. The CVC has been recognized by ARCH as an Innovative and Exemplary Respite service. Learn more about the NC Volunteer Caregiver Respite Consortium.
  • With support from the South Carolina Department on Aging, the South Carolina Respite Coalition developed Respite Breakrooms, a model for faith- and community-based respite. To help replicate this Breakroom model, the coalition developed strategies to support development using a How To Guide, evidence of effectiveness, and lessons learned.
  • The Tennessee Caregiver Coalition developed the Sumner Senior Volunteer Program, with support from the West End Home Foundation, a local foundation focused on serving older adults in the Middle Tennessee region, which replicates Tennessee’s AmeriCorps-funded Senior Companion Program, and provides four or more hours of in-home or virtual respite per week  for caregivers who had previously received vouchers through the Tennessee Voucher Program, but desired a higher respite dose, more consistently scheduled respite, and/or had difficulty locating a respite provider. The volunteer program is recognized by ARCH as an Innovative and Exemplary Respite Service.
  • Grantees partnered with university students to provide respite:
    • In 2016,the Rhode Island Lifespan Respite grantee, the Rhode Island Office of Healthy Aging, launched the Nursing Student Respite Workforce Initiative, in collaboration with the Rhode Island College (RIC) and University of Rhode Island (URI) nursing programs that offer student nurses clinical experience and course credit while being matched with low to moderate income families who had no access to subsidized respite care. More schools have been added including Community College of Rhode Island and the New England Institute of Technology. This initiative has been recognized by ARCH as an Innovative and Exemplary Respite service.
    • The Massachusetts Lifespan Respite grantee is collaborating with the University of Massachusetts Amherst to pilot and then replicate the Campus to Community respite program. Visit the website.
    • At the Home Away from Home Respite Center at the University of Rochester Medicine, respite for aging populations with Alzheimer’s and other dementias is provided primarily by trained college student interns and volunteers. The program is supported by Lifespan Respite grant funds from the New York State Caregiving and Respite Coalition, in partnership with Livingston County Office for Aging, and the Geneseo Interfaith Center and Dansville Methodist Church. Home Away from Home is recognized by ARCH as an Innovative and Exemplary Respite Service.

Approaches:

• Grant Writing: Applying for discretionary grants from public agencies.[1]
  
• Leveraging: Maximizing federal revenue by taking advantage of programs that provide funding contingent on other federal, state, local, and private funding.
• Refinancing: Utilizing other sources of funding to pay for activities already provided, thereby freeing up your own funds for a new use.
• Administrative Claiming: Using available Medicaid and other funds to cover an array of administrative costs, based on local match funds.

[1] For definitions of various federal funding steams, including discretionary grants, see Federal Funding and Support Opportunities for Respite, p. 15.

Examples:

• State Lifespan Respite grantees and respite coalitions pursued public and private grant funding at the local, state, and federal levels including foundation grants.

• • Idaho’s Boise State University submits 2-3 grants per year to local healthcare systems, health insurers, and local foundations to support the Idaho Caregiver Alliance and its family caregiver support efforts.
  • The New York State Caregiving and Respite Coalition (NYSCRC) received $3 million in federal funding from AmeriCorps Seniors federal funding to forward the work of the Lifespan Respite Coalition and support respite and workforce development.
  • The Respite Care Association of Wisconsin (RCAW) secured private foundation funding that allows RCAW to expand its activities and outreach to more groups and target those in most need. RCAW can leverage state funding to meet federal match requirements and pursue additional funding opportunities that require a match.

• More states are collaborating with their state Medicaid and state funded home- and community-based providers to provide respite or enhance family support services.^[1],[2]

• • Florida, Iowa, Michigan, and Texas use Medicaid contractual language to give managed care organizations the flexibility to increase respite care service limits to exceed those found in the states’ Medicaid waivers.
  • The Idaho Caregiver Alliance was funded by Medicaid’s Money Follows the Person program to establish their Family Care Navigator. Capacity has also been expanded through contracts with the Idaho Department of Health and Welfare’s Division of Medicaid to develop a curriculum for direct care professionals.
  • Iowa, through the consumer choices (self-directed) option within its’ Medicaid 1915(c) HCBS waivers, ensured that unused respite dollars in an individual’s monthly budget will go into savings for future respite purposes.
  • Kansas and Texas expanded coverage and eligibility of respite services as a value-added benefit under their Medicaid managed care contract.
  • North Carolina received support from the NC Division of Medical Assistance (DMA) that manages the state Medicaid Program resulting in the DMA’s Money Follows the Person Rebalancing Fund. Funds were used to support Family Caregiver-to-Caregiver Peer Support grantees across the state.
  • North Dakota Health and Human Services (DHHS) uses Medicaid administrative claiming through the Aging and Disability Resource-LINK (ADRL) of North Dakota intake system for admittance and intake into their respite and other home-based programs.
  • The Respite Care Association of Wisconsin receives partial funding  through state funds from the Wisconsin Department of Health Services – Division of Medicaid Services.

[1] For more information about how States Cover Respite Care and Adult Day Services in Medicaid Managed Long-Term Services and Supports (MLTSS) go to https://nashp.org/state-tracker/states-cover-respite-care-and-adult-day-services-in-medicaid-managed-long-term-services-and-supports-mltss/.   

[2] For additional examples of how states provide respite benefits through Medicaid, see Respite Care: State Policy Resource Guide prepared by the National Academy for State Health Policy in collaboration with ARCH at https://52b708f968.nxcli.io/wp-content/uploads/2023/07/Respite-Care-Resource-Guide.pdf

Approaches:

• Coordination: Aligning categorical funding from a number of agencies and funding streams to support community and program-level initiatives, such as interagency fiscal partnerships to support direct services or infrastructure.
• Pooling: Combining a portion of funds from several agencies and programs into a single unified funding stream.
• Decategorization: Advocating for removing narrow eligibility requirements and rules governing allocations from existing funding streams.
• Development of Interagency and Intra-agency Fiscal Partnerships: A core component of a coordinated Lifespan Respite system is developing partnerships with other state agencies, or within state agencies, to support direct services or the system’s infrastructure.

Examples:

• State Lifespan Respite grantees and partners collaborated with existing state and federal programs and leveraged funds from other state programs to support administrative costs and expand respite opportunities and caregiver support across the state.

• • The Idaho Alzheimer's Disease and Related Dementia Program (ADRD) was established within Idaho's Department of Public Health in 2021 to integrate brain health and the prevention of chronic brain disease more fully in public health. The Idaho Caregiver Alliance was one of many partners with Idaho’s ADRD program to ensure improved caregiver supports and education.
  • The Nebraska Lifespan Respite Network  relies on state funds, including Nebraska Health Care Cash Fund and  related Tobacco Settlement Trust Fund to support respite services and the Respite Network’s infrastructure.
  • Based on the success of the New York State Caregiving and Respite Coalition’s respite voucher program, the New York State Office for Aging (NYSOA) is scaling up the voucher program to allow Area Agencies on Aging (AAA) to use sing National Family Caregiver Support Program funds to offer respite vouchers to family caregivers.
  • Rhode Island Office of Healthy Aging leveraged grant funds with the Older Americans Act Title III-E National Family Caregiver Support Program and RI state funds designated for respite services to increase participation in the CareBreaks (CB) program. The CB program helps pay part of the respite care costs for families with low to moderate income who have no access to any other program for subsidized respite care.
  • The South Carolina Department on Aging (SCDOA) and partners used several strategies to leverage respite funding:

• • • SCDOA used State Caregiver Funds as match for the Older Americans Act and Lifespan Respite Funding. Having a consistent stream of state funds allows SCDOA to pursue grant opportunities that require a match.
    • South Carolina’s Lifespan Respite partners worked alongside Area Agencies on Aging (AAA)/ADRCs to provide respite across the lifespan serving family caregivers with Older Americans Act funds, state caregiver funds, and Alzheimer’s respite funds, while the SC Respite Coalition (SCRC) utilized Lifespan Respite and state caregiver funds to serve caregivers not covered by the other funding streams. This braiding of funds has created a collaborative approach to providing respite. With these respite funds being tied to one state agency (SCDOA), they are able to share resources, databases, assessment tools, and training more efficiently.
    • The South Carolina Respite Coalition (SCRC) is funded with state funds from the SC Department of Disabilities and Special Needs to train family caregivers and to register and train individual respite providers who participate in the Family Selected Respite Program.

• Some state grantees and partners pool different state agency funds to provide respite services, training  and caregiver supports through coordinated funding streams.

• • Alabama Lifespan Respite (ALR) contracted with all 13 Alabama Area Agencies on Aging/Alabama Cares programs statewide, the Alabama Department of Mental Health, and the Alabama Department of Rehabilitation Services/Children’s Rehabilitation Services to deliver personal choice option respite reimbursement to caregivers who are enrolled with or qualify for their respite programs. These partnerships not only allow ALR to reach and connect with many caregivers across the lifespan statewide and offer them caregiver supports (caregiver education, caregiver wellness, support groups, resources), but also serve as a revenue source for ALR (contract partners pay ALR a 10% fee to administer their respite funds).
  • The Arkansas Division of Aging and Adult Services (DAAS) provided staff, outreach and marketing, and a State General Revenue cash match to support caregiver/respite worker training.
  • The Colorado Respite Coalition, a program of Easterseals Colorado, and the  Colorado Department of Human Services, implements a grant program using Colorado State General Funds. Funds are available to qualified non-profit and for-profit agencies which already provide respite care. This grant program supports services across the lifespan and health and disability spectrums and serves the entire state of Colorado.
  • North Dakota utilizes state funding to provide respite to eligible caregivers through the state home and community-based service system.

• Most state lifespan respite initiatives participate in a variety of community networking activities (local/regional/state meetings, workshops, community events) or data collection efforts to share information about existing resources so they can build interagency relationships.

• • The Illinois Respite Coalition (IRC) collaborated with the Illinois Department of Human Services (IDHS) to roll out a statewide caregiver survey to reach caregivers across the lifespan serving individuals with disabilities.
  • The Nebraska Lifespan Respite Network built a Respite Data Dashboard  that visually tracks, analyzes and displays key performance indicators (KPI), metrics and key data points for respite care from various state agencies with whom they have collaborative partnerships. 
  • The Wisconsin Respite Care Association (RCAW) worked closely with state agencies to identify existing respite program gaps and to effectively plan to ensure no duplication or supplanting of state and federal funding. This provided respite service delivery efficiencies to stretch respite funds to better serve family caregivers.

Approaches:

• Leveraging: Creating partnerships that expand the fiscal base for respite services.
• Leadership: Building new, shared public-private leadership for investments in respite services.
• Technical Assistance: Creating opportunities for sharing information, knowledge, referrals, skills and technical resources needed to create and sustain systems of support and services.
• Grassroots/Community Engagement: Grassroots support and efforts, especially through the use of volunteers, the faith-based community, and other localized resources are showing promise in assisting with long-term sustainability.
• Foundation Funding: Public funding options are scarce and unlikely to grow in the near term. Private funding has also been limited in these economically challenging times. But private foundation, including community foundation funds and private donations should not be overlooked. States can look to state respite coalitions or other private sector partners to help pursue such funding opportunities.

Examples:

• Public-private partnerships are used by state grantees and partners to expand the reach of respite and caregiver support services.

• • The Idaho Caregiver Alliance maximized resources by partnering with the Schools of Social Work and Public and Population Health at Boise State University. Capitalizing on the talents of students they 1) expanded advocacy and outreach efforts; 2) provided Spanish-speaking caregivers with information/support; 3) assisted partners with research and reporting activities; 4) provided caregiver navigator support services, and 5) helped sponsor a virtual statewide caregiver conference and an in-person event designed for the Latinx community.

• State Lifespan Respite grantees and partners have expanded respite services and options to gap populations (e.g., populations that do not qualify for other public funding services, are on waiting lists for services, or typically have access to fewer respite services options or trained providers, including those with mental health conditions, autism, dementia) through respite mini-grants to local service providers and faith-based organizations. Funding mini-grants helps demonstrate need and community buy-in. In turn, this can help leverage other funds.

• • Through Pennsylvania’s Take Five initiative, which was an outgrowth of their Lifespan Respite grant, the PA Department of Health funded over 20 community and faith-based volunteer respite initiatives across the state. Key to sustaining many of these efforts was the ongoing technical assistance funded by the state through the University Center for Excellence in Developmental Disabilities at Temple University. Watch the webinar, Volunteer Respite – Putting the Pieces Together: Implementation from Recruitment to Matching.
  • The South Carolina Department on Aging (SCDOA) Alzheimer’s Resource and Coordination Center utilized mini grants to fund the development or expansion of respite programs for individuals with Alzheimer’s Disease and Related Dementias (ADRD).
  • The South Carolina Respite Coalition (SCRC) provided mini-grants to expand its Breakroom Project in faith communities and other community organizations including Senior Centers and university campuses. This seed money has helped form additional community-based, volunteer-run respite locations. The Coalition (SCRC) is expanding partnerships with community-based volunteer programs like the Medical Ministry in SC to pair Breakrooms with Medical Ministry sites.

• States supported working caregivers through employer engagement activities. Learn more.

• • Colorado Respite Coalition's Caregiving-Friendly Workplace Toolkit provides information about the impacts of caregiving on workers and companies, as well as strategies for Colorado employers to create workplaces that help support caregivers.
  • The Nebraska Lifespan Respite Network sought public/private partnerships by leveraging their local Lifespan Respite Coordinators to engage businesses in increasing awareness of employed caregiver issues, the benefits of respite care, and access to resources available through the NE Lifespan Respite Network. For example, the University of Nebraska Medical Center and Nebraska Medicine both integrated information on respite resources into their employee new hire orientation process. To address the growing needs of employees who also have family caregiving responsibilities, the Nebraska Lifespan Respite Network also offers a Nebraska Caregiver Survey. Read more about Nebraska Lifespan Respite Network Network’s Employer Engagement activities.
  • The New York State Office on Aging (NYSOFA) developed a coordinated program to identify working caregivers in need and connect them to existing and funded respite services. View Caregivers in the Workplace, the New York Resource Guide for Businesses developed by NYSOFA in partnership with the New York Department of Labor.
  • The Wisconsin Family and Caregiver Support Alliance took a collaborative approach with other respite and family support agencies/groups to address the needs of working caregivers including 1) making the University of Wisconsin-Extension survey available to employers to find out how many employees are caregivers; 2) creating venues to share employee information and resources; 3) dialoguing with employers about what options might work; 4) training HR staff to understand working caregiver needs; and 5) using the Wisconsin survey report worksheet to set goals and get buy-in from other employers.  See Wisconsin’s Working Caregivers: Strategies and Resources for Employers.

• Community engagement, training, networking, collaboration, and grassroots efforts helped many states expand the reach of their family support and respite programs.

• • North Dakota DHHS developed a close partnership with North Dakota State University (NDSU) Extension for multiple programming services as well as North Dakota Assistive for addressing assistive technology needs.
  • Using Lifespan Respite Care grant funds, the Community Living, Aging and Protective Services Division of Oklahoma Human Services partnered with Oklahoma ABLE Tech to develop and distribute Respite Kits. The kits provide assistive technology (AT) to help people with disabilities, mobility, or cognitive decline do tasks more independently. This makes it easier for caregivers to take breaks because their loved ones need less help. AT gives caregivers the opportunity to take breaks, engage in self-care, and pursue other interests. This initiative has been recognized by ARCH as a Rising Star in its Innovative and Exemplary Respite Services initiative.
  • Lifespan Respite Washington expanded the reach of respite care services to support unpaid, unserved family caregivers through several efforts: 1) providing a grant serving eight tribes in Washington State; 2) matching funds from a crisis nursery that uses no government dollars; 3) securing annual financial donations from local foundations; and 4) developing a partnership with a state Traumatic Brain Injury grantee.
  • The Wisconsin Family and Caregiver Support Alliance identified respite as a major priority area and fostered statewide community engagement due to active participation by the Respite Care Association of Wisconsin (RCAW), the Wisconsin Aging Advocacy Network (WAAN), Area Agencies on Aging (AAAs). This provided a mechanism for providing technical assistance and engaging in grassroots efforts on specific issues.

• State lifespan respite initiatives secured foundation and other community funding to expand or enhance lifespan respite efforts:

• • Alabama Lifespan Respite and Lifespan Respite Washington secured funding from The Christopher and Dana Reeve Foundation to provide respite reimbursement funding for families caring for someone with paralysis caused by spinal cord and other injuries, diseases, or birth conditions.
  • The Colorado Respite Coalition received funding from a private foundation to fund respite activities, including collaboration, and a respite toolkit to help families and professionals better understand how to navigate Colorado funding streams for respite services.
  • South Carolina Respite Coalition (SCRC) continued to successfully pursue private foundation grants to support respite vouchers and/or community-based volunteer respite providers. Also, the  Duke Endowment funded caregiver projects with a focus on kinship families.

Approaches[1]:

• Fundraising: Organizing community fundraising campaigns to generate support.
• Charging Fees for Service: Charging fees to service users to help cover the program costs.
• Generating Unrelated Business Income: Creating revenue by pursuing an activity not related to the mission of the organization or program.
• Advocacy/Education: Committing resources to support a coalition composed of diverse agencies and organizations representing a broad spectrum of the aging, disability, and chronic illness community to help leverage private and state funding, promote public awareness and maintain support, and engage new resources and partners to support respite services and Lifespan Respite systems for the long-term.
• Special Taxing Districts: Creating independent units of government with taxing authority dedicated to a specific purpose.
• Special Tax Levies: Adding on to existing taxes, with the additional revenues earmarked for specific programs or services.
• Fees and Narrow-Based Taxes: Generating revenue from fees or taxes on specific segments of economic activity, usually the use of a service or goods.
• Lotteries and Gaming: Using lottery and gaming proceeds to support respite programs and initiatives.
• Income Tax Check-Offs: Allowing taxpayers to designate a portion of their tax liability or to donate a part of their refunds to specific services or programs.

[1] Approaches involving special taxing districts, tax levies, lotteries and gaming, and income tax check-offs may require new state or local legislation or adherence to existing laws.  

Examples:

• States used fundraising campaigns to create opportunities for flexible respite funding and community collaboration.

• • The Tennessee Respite Coalition makes effective use of frequent fundraising campaigns and events to increase community engagement and support the respite services they provide.

• Using cost-sharing helped states maximize funding for their respite programs.

• • The Montana Lifespan Respite Program and Rhode Island Carebreaks use cost-sharing in their respite voucher programs, which stretched the funds so that more caregivers can be served. Learn more.
  • The South Carolina Department of Aging (SCDOA) has an Area Agency on Aging (AAA) that used cost-sharing with its Family Caregiver Support Program (FCSP). The AAA received over $5,000 in cost share funds from caregivers to add back into program services. Their non-profit status also provided an opportunity to negotiate lower respite rates with home care companies, allowing the home care agency to write off the difference between their private pay rate and discounted rate.

• Coalitions, their partners, and community-based agencies successfully advocated for state budget line items or other forms of legislative action to support respite services and collect data to support these efforts.  Learn more about State Advocacy, State Respite and Caregiver Task Forces, and State Lifespan Respite Legislation.

• • Alabama Lifespan Respite Coalition, the Alabama Department of Senior Services, and Alabama Lifespan Respite developed a white paper, A Voice that Matters, to provide recommendations and provide critical updates for policymakers to ensure respite, education, assistance, and advocacy are available for Alabama's caregivers.
  • Boise State University in Idaho engaged in rigorous evaluation of the Family Caregiver Navigator program and used findings to demonstrate the impact of providing support for family caregivers to enhance state advocacy efforts with legislators.
  • The Colorado Respite Care Program, with the help of Easterseals Colorado and in partnership with the Colorado Respite Coalition, successfully advocated for State General Funds. The funds are designated for Lifespan Respite supports, with the majority distributed as community grants and family respite vouchers.
  • The Idaho Caregiver Alliance (ICA) and the Idaho Commission on Aging (ICOA) gathered survey and assessment data to publish the Idaho Lifespan Family Caregiver Action Plan, which gained unanimous support from the Idaho Legislature, and includes objectives to enhance the state’s Lifespan Respite system and funding strategies. In subsequent years, the ICA developed a Strategic Plan for 2020-2024 to guide its work and its legislative agenda, and hosts an annual legislative luncheon at the State Capitol to continue to inform and educate legislators and advocate for caregivers.
  • The all-volunteer Nebraska Caregiver Coalition focuses on advocacy and public awareness. They host events for state legislators to ensure that state funds for the Lifespan Respite Program are maintained and partner with the NE Lifespan Respite Network to provide family caregiver education events to support family caregivers who in turn help with advocacy efforts.
  • The Respite Care Association of Wisconsin (RCAW) worked with statewide alliances, coalitions, and various groups to inform elected officials of the need to increase funding for respite care programs. This has resulted in additional funding through 1) working with the State Joint Finance Committee to incorporate an increase in funding and 2) working with the Governor’s office to include a funding increase in his budget. These efforts resulted in multiple advocacy organizations including an increase in respite funding in their advocacy efforts and position statements. 

• States effectively use lotteries, gaming, and related state taxes and licensing fees to support respite:

• • The New Jersey Statewide Respite Care Program has received funding from casino revenues since 1988 for respite for  family caregivers caring for individuals age 18 or older who have disabilities. 
  • The South Carolina Department of Aging (SCDOA) received funding from the state bingo tax and licensing fee revenues annually. This funding is divided between the Senior Center Permanent Improvement Project (PIP Grants) and Home and Community Based Services (HCBS). Though these funds are not respite-specific, they contribute to the larger availability of Long Term Services and Supports (LTSS).

• States, counties, and cities used  special tax levies to earmark funds for specific human service needs, including caregiver supports and respite.

• • San Francisco, CA, passed legislation for The Dignity Fund to guarantee funding to enhance support services to help older adults and adults with disabilities age with dignity in their own homes and communities. The Department for Aging and Adult Services (DAAS) administers the fund.
  • In Ohio, more than 80% of the state’s 88 counties have tax levies that benefit senior services. These levies support a wide array of services for older adults including respite and adult day care.
  • The South Carolina Department of Aging (SCDOA) use Income Tax Check-Offs to fund the SC ElderCare Trust Fund. These funds go to community-based nonprofits to support services to help seniors stay in their homes. Since 1992, the fund has awarded over $450,000 to over 35 non-profits statewide to address home accessibility, dementia education for first responders and family caregivers, transportation vouchers, and food insecurity. While these funds do not go directly to support respite or family caregivers, they help bridge other gaps in the state to make seniors and family caregivers lives better.