Archive for: The RAISE Family Caregiver Resource and Dissemination Center

Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act to establish the Family Caregiving Advisory Council, tasked with developing the country’s first national family caregiver strategy. To support the council’s work, the National Academy for State Health Policy (NASHP) created the RAISE Act Family Caregiver Resource and Dissemination Center with support from The John A. Hartford Foundation and in collaboration with the US Administration for Community Living (ACL). NASHP compiled this resource with generous funding from the Hartford Foundation.

To assist the RAISE Family Caregiving Advisory Council in their deliberations, NASHP collected and analyzed about 800 recommendations from 13 national, 12 state, and 2 international reports, most of which were written in the past decade. To be included in this inventory, recommendations had to be developed from multi-stakeholder and consensus input. NASHP received feedback on the key reports from the council, ACL, and the council’s faculty. 

The RAISE Act requires that the national family caregiving strategy identify recommended actions that federal, state, and local governments, communities, health care providers, long-term services and supports providers, and others are taking – or may take – to recognize and support family caregivers. In February 2020, the RAISE Family Caregiving Advisory Council adopted the following five goals:

Goal 1: Expand awareness, outreach, education, and access to programs, services, and products to optimize the physical, emotional, and financial well-being of family members.

Goal 2: Recognize, include, and support family caregivers as key partners in the provision of health care and long-term services and supports.

Goal 3: Protect, promote, and enhance financial workplace security of family caregivers.

Goal 4: Promote research, identification, and adoption of evidence-based practices in caregiver support.

Goal 5: Strengthen program administration, governance, and collaboration among all appropriate stakeholders to build a society that recognizes family caregivers.

NASHP categorized and synthesized the recommendations into these five goals and highlighted actions that governments, providers, and communities can take as detailed in the act. Many recommendations cut across several content areas. This overview summarizes the recommendations that appeared in four or more reports. Appendix A contains a synthesis of all the recommendations, and a full list with links to the reports can be found in Appendix B.

Over the past decade, significant commissions and consensus studies at the national, state, and international levels have issued recommendations that can inform the advisory council and help them build a strategy. 

These entities issued these calls to action because family caregivers are providing most of the care for people with disabilities, complex needs, and/or frailty. In 2017, about 41 million family caregivers in the United States provided care to an adult with self-care needs, totaling $470 billion in unpaid care. These numbers are even higher when factoring in family caregivers of children with special needs. These reports are grounded on the premise that services, reforms, and research are needed to better meet the needs of family caregivers and the people they care for.

NASHP found great similarities and themes among the recommendations despite their geographic diversity (from Alabama to Australia), age of individuals needing care (ranging from newborns with intellectual disabilities to frail elders with dementia), and family caregiver make-up (representing all age, multi-cultural, and socio-economic groups). 

1. Across the reports and in accordance with Goal #1, recommendations identified the need for awareness, outreach, education and access to programs, services, and products to assist family caregivers and care recipients. 

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Strategies to Enhance Support for Family Caregivers

To accomplish this goal, NASHP identified these seven strategies from the family caregiving reports’ recommendations:

• Improve family caregivers’ access to information, training, and referral; 
• Expand family caregivers’ access to services and supports;
• Improve access to technology to better enable family caregivers;
• Increase and strengthen the paid care workforce; 
• Address social determinants of health to promote living in the community;
• Expand respite care options; and
• Expand family caregiver and long-term services and supports financing. 
• Training in caregiving basics, medical/nursing tasks, financial caregiving, legal issues, mental health support, communication, physical tasks, caregiver self-care, and/or end-of-life care;  
• Continuing support for programs and services that provide education, training, and awareness for caregivers, including up-to-date state websites and inventories of respite services; 
• Working with multicultural communities and family caregivers from non-English-speaking backgrounds to increase self-identification, empower their role as caregivers, provide easily accessible information and training, and promote the supports and services available to them; and 
• Marketing or communications strategies to raise awareness and increase access to programs and services for family caregivers; recommended strategies included expanding the “no wrong door” aging and disability resource centers that are in every state, and providing streamlined access to information and services for individuals with disabilities, older adults, and their family caregivers. 

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Information, training, and referral: The reports (19) contained many recommendations in this category, noting that family caregivers often do not know where to turn for help and lack access to services. The reports called for: 

• Training in caregiving basics, medical/nursing tasks, financial caregiving, legal issues, mental health support, communication, physical tasks, caregiver self-care, and/or end-of-life care;  
• Continuing support for programs and services that provide education, training, and awareness for caregivers, including up-to-date state websites and inventories of respite services; 
• Working with multicultural communities and family caregivers from non-English-speaking backgrounds to increase self-identification, empower their role as caregivers, provide easily accessible information and training, and promote the supports and services available to them; and 
• Marketing or communications strategies to raise awareness and increase access to programs and services for family caregivers; recommended strategies included expanding the “no wrong door” aging and disability resource centers that are in every state, and providing streamlined access to information and services for individuals with disabilities, older adults, and their family caregivers.

Access to services and supports: The reports (16) called for closing the gaps in caregiver support services, particularly those in rural areas. They noted the need to increase access to affordable caregiver services and supports, including for those caring for adults with Alzheimer’s disease and related dementias, behavioral health issues, rural, low income and culturally diverse caregivers, and others. 

Medicaid is the largest public payer for long-term services and supports (LTSS). Recommendations called for more caregiver support through Medicaid home- and community-based waivers, and to expand waiver eligibility. Several reports linked the presence of well-informed, well-prepared caregivers with the ability of individuals with functional limitations to stay in the least-restrictive settings. According to several reports, more needs to be done to allow individuals and family caregivers to choose a provider who best meets their needs, including the promotion of consumer-directed and/or voucher models of service delivery.    

Technology: Recommendations from 11 reports noted that family caregivers could benefit from greater access to technology such as telemedicine, telehealth, assistive devices, virtual aging, and disability resource centers, online education, virtual family meetings and chats, online calendars, virtual visits, mobile apps, and electronic health records. Paying for these technologies is a barrier, so reports recommended exploring reimbursement, innovation funds, tax relief, and market-based solutions such as vouchers.   

Paid workforce: The lack of an adequately trained workforce in community-based care and LTSS delivery directly impacts family caregivers, so 13 reports issued recommendations to increase and strengthen the paid care workforce. Reports cited the need to address the training and capacity of health care and social service providers and case managers to provide caregivers with evidence-based supports, benefits information, and local services in the community. 

Recommendations also addressed improvements specifically for direct care workers who are personal care attendants, home health aides, and nursing assistants. Direct care workers experience low wages and high turnover rates as well as a lack of benefits and career advancement. Thus, recommendations issued to tackle these challenges included higher wages, career advancement, nurse delegation of additional home care tasks, training standards and certification, and integration into care teams. 

Social determinants of health: As noted in 11 reports, family caregivers could benefit from not only improved health and social services, but also access to other support services, such as home modifications, assistive technology, and transportation. Expanded transportation options include access to medical and non-medical transportation considering that family caregivers are commonly called upon to drive the people for whom they care to appointments. The reports noted the need for changes to the built environment through home modifications and age-friendly communities to better support people with disabilities, family caregivers, and the aging population.

Respite care Many reports (14) stressed the need for increasing the availability of affordable respite care and providing short-term care relief for family caregivers, including a range of options.

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Range of Respite Care Options

Respite options that were cited in the recommendations include:

• In-home;
• Out-of-home, facility-based care,
• Vouchers;
• Self-directed;
• Culturally-specific;
• Mobile adult day services;
• Volunteer; and
• Fee-for-service or managed care.

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When reviewing and planning for the design and delivery of family caregiver services, reports emphasized examining respite services across the lifespan and for people requiring all levels and types of care. 

The reports featured innovative ideas, including training college students and volunteers, evaluating best practice training, continuing the Lifespan Respite Care program, creating a directory of local respite care, and developing a statewide respite registry. Noting that cost is a barrier, reports recommended implementing a targeted outreach plan to identify and partner with faith-based and volunteer organizations to expand the number of free respite programs.

Payment: The hardest part of expanding family caregiver supports and LTSS is paying for them, which is why nine reports addressed family caregiver and LTSS financing. Reports issued a wide range of recommendations addressing Medicare, Medicaid, private long-term care insurance, disability insurance, and tax incentives. Some reports specifically recommended designing and establishing tax credits for qualified caregiving expenses and/or making family caregivers eligible to receive payments for some of their caregiving hours. 

2. Across reports and in accordance with Goal #2, the majority of reports called for improving assessment and service planning — including care transitions and coordination — by involving family caregivers and care recipients. 

These recommendations often noted two related strategies:

• Identifying and assessing family caregiver needs, and 
• Improving care coordination and ensuring informed care transitions among providers and care settings. 

Identification and assessment: The reports reveal that it is not a common practice for family caregivers to be identified and asked about their own needs. Recommendations commonly call for broader assessment capacity that is not solely based on the diagnosis of the person needing care, but also includes the needs of individuals and their family caregivers. 

These recommendations (from 16 reports) ranged from identifying, testing, developing, and revising assessments to mandating and providing reimbursement for assessments. Reports called for identifying an assessment tool(s) and implementing processes that can be used to determine caregiver needs and competencies to assume and maintain caregiver responsibilities. They also noted the need to address diversity in assessing these caregiver needs. 

Health care and LTSS providers and government-funded organizations could include a caregiver component to current assessments. Medicare, Medicaid, Veterans Affairs, and/or state-funded programs could ensure that family caregivers are routinely identified and their needs assessed and supported by health care providers and LTSS. The assessment of individuals and their family caregivers could produce a single care plan across settings. 

Care coordination: Family caregivers help navigate complex, often fragmented systems of providers and services. They may serve as de facto care coordinators. Not surprising, 15 reports issued recommendations to improve care coordination and ensure informed care transitions between providers and care settings for better integrated care, including:

• Implementing a targeted outreach plan to educate the public and partners — including physician groups, hospital discharge planners, home health agencies, and community-based organizations — who provide personal assistance about family caregiver needs and processes for referral; 
• Developing, implementing, and/or reviewing care management standards, hospital discharge planning, and risk assessment processes to better involve family caregivers;  
• Implementing care coordination and transition procedures for hospitals and primary care practices serving people with dementia; and 
• Leveraging electronic health records to provide standardized care plans across settings and to identify family caregivers in them, especially when they are a part of the care plan. With permission, providers could grant family caregivers access to these records as well.     

Care coordination improvements could lead to better support of family caregivers as the care recipient transitions from hospital to home, rehabilitation, and/or hospice. 

3. A strong recommendation (as well as goal #3) was that financial security and employment policies for family caregivers need to be enhanced and discrimination against caregivers in the workplace should be prohibited. 

More than one out of six families in the United States provide care to an older adults or person with a disability while working full-time or part-time outside of the home. A dozen reports addressed financial security and workplace issues by: 

• Calling for the evaluation and potential adoption of policies to support working caregivers through flexible work schedules, paid or unpaid leave, workplace assistance programs, and financial and legal assistance;
• Issuing recommendations to expand the minimum requirements of the Family and Medical Leave Act (see box); and

• Noting the need to engage the private sector — employers and industry — to better recognize and support employees who are family caregivers, promote workplace flexibility, explore tax incentives to assist employers who offer paid family medical leave, and offer financial assistance.

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Strategies to Expand the Family and Medical Leave Act (FMLA)

Options for expanding FMLA cited in the recommendations include:

• Covering workers in businesses with fewer than 50 employees; 
• Expanding the definition of family member to include in-laws and others;
• Expanding the allowable uses of FMLA to include employees taking family members to medical appointments; 
• Decreasing the time an employee must work before becoming eligible; 
• Increasing the length of leave allowed beyond 12-weeks; and
• Including provisions for paid leave.

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4. Most of the reports contained many recommendations to promote research, identification, and adoption of evidence-based practices in caregiver support. 

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Strategies to Promote Quality, Data, and Research

To accomplish this goal, NASHP identified these three strategies from the family caregiving recommendations:

• Promote and disseminate promising and evidence-based practices that advance quality of care and life;  
• Improve available data on family caregivers; and
• Improve and expand family caregiver research and development. 

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Promising and evidence-based practices to promote quality. Standardized quality of care and quality of life measurements — particularly pertaining to home- and community-based care and family caregiver outcomes — and evidence-based interventions are in their infancy. Most national and state reports (18) made recommendations to promote and disseminate promising practices and scale up evidence-based programs. These recommendations include:

• Working with culturally and ethnically diverse communities to develop services and models that best meet their needs; 
• Expanding and replicating programs to new populations, disability types, and life stages by promoting person-centeredness and self-direction and enhancing peer-led interventions across the lifespan with a focus on future planning; and
• Encouraging the use of evidence-based care coordination programs along with caregiver assessments as well as caregiver interventions. 

Data: Four of the national reports focused solely on family caregiver data and research recommendations. However, many reports (11) contained recommendations for better data development. Information collected on family caregivers could be expanded to include demographics, prevalence and nature, costs of care, health status, specific needs of diverse and multi-cultural caregivers, and the level of unmet need. 

Reports called for better, consistent data through the development of/agreement on a core set of family caregiver questions that could be added to national surveys. The US Centers for Disease Control (CDC) has a Behavioral Risk Factor Surveillance System (BRFSS) survey with a caregiver module that states voluntarily can use. States could be incentivized to complete the BRFSS voluntary caregiver module at least every five years. 

Recommendations also cited the need for better monitoring, tracking, and evaluation of the impact of caregiving on families and family supports. Reports noted that data collection infrastructures within the departments of health and human services, labor, and veterans affairs could be leveraged to monitor, track, and report on the experience of family caregivers. 

Research and development: A large number (14) of reports addressed the need for improved and expanded research on family caregivers. Recommendations included:

• Studying caregivers across the lifespan and closing service gaps, especially related to underserved populations such as caregivers in rural areas;  
• Conducting research on care, services, and supports for person with dementia and their caregivers with a focus on building an evidence base for services and supports; 
• Studying caregiver interventions and documenting return-on-investment in caregiver supports to determine effectiveness in sustaining family caregivers and limiting costs of institutional care; and
• Designing studies to include family caregivers across racial and ethnic populations by over-sampling under-represented groups as well as examining and comparing their outcomes across groups.

5. The recommendations as well as the council’s work are designed to strengthen program administration, governance, and collaboration among all stakeholders to build a society that recognizes family caregivers.

Stronger governance and collaborations are key to better supporting caregivers, as cited in eight reports. The national reports focused on supporting families across the lifespan by recognizing the role of families and underscoring the need to support families through key federal policies and national programs. Likewise, the state-based reports zeroed in on state initiatives and policies, such as the development of state plans to better support family caregivers. 

The reports underscored that governments cannot do it alone: public-private partnerships with faith communities, corporations, and voluntary associations are important. Family caregivers should also be included in federal, state, and private efforts in formalized ways. 

The nearly 800 recommendations from these notable family caregiving reports provide a wealth of material for the advisory council to consider. The quality and effort found in these significant consensus reports provide an excellent foundation for the advisory council. 

The challenge will be to prioritize the recommendations and make them actionable by adding another level of specificity. In addition, many of the recommendations will require funding. Federal and state health care budgets are increasingly challenged due to a number of factors, and states in particular need to balance budgets amid multiple, competing priorities. To ensure success as it confronts these critical challenges, the council will need to review these recommendations in the context of scarce resources and: 

• Identify new resources;
• Repurpose existing funds where it makes sense; and 
• Articulate and quantify the significant value that family caregivers add to state and federal health care systems.

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Level of Specificity Needed for Recommendations in a National Strategy

To build on the analyzed recommendations, the council needs to consider articulating specific proposals as it adopts a national strategy, which could include:  

• Prioritizing goals into long-, medium-, and short-term;
• Target achievement dates;  
• Funding amounts and sources of payment; 
• Legislative or regulatory changes, if needed;
• Percentage or number of family caregivers served;  
• Federal agency-specific roles and responsibilities;  
• National, state, and local entities to implement the initiatives;  
• Public-private partnerships including the involvement of faith communities, businesses, and stakeholders; and  
• Various measurable outcomes.  

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These elements will enable the secretary to oversee action and progress on the adopted recommendations and monitor ongoing analysis of innovative models and evidence-based practices.

Synthesis of State, National, and International Family Caregiver Recommendations

Goal 1. Expand awareness, outreach, education, and access to programs, services, and products to optimize the physical, emotional, and financial well-being of family members.
(1) Improve family caregivers’ access to information, training, and referrals (19 reports).	Continue support for programs and services providing education, training, and awareness for caregivers, including state websites and inventories of respite services.
	Provide in-person and online training about medical/nursing tasks, caregiving basics, financial caregiving, legal issues, mental health support, communication, physical tasks, caregiver self-care, and/or end-of-life issues.
	Develop and implement a marketing and communication strategy/campaign to raise awareness and increase access to programs and services for family caregivers.
	Work with ethnically and culturally diverse communities and family caregivers from non-English-speaking backgrounds to increase self-identification, empower them in their roles as caregivers, provide them with easily accessible information/education/training, and promote the supports and services available to them.
	Expand the “no wrong door” aging and disability resource centers.
	Expand caregiver consultation service; create regional “hubs” or virtual centers to increase access to support for caregivers, such as virtual aging and disability resource centers, virtual visits, and online calendars.
	Create a comprehensive guide to caregiving in states.
	Educate the public about the importance of advanced planning for long-term service and support needs.
	Implement and fund information, programs, and supports for family caregivers of loved ones with mental illnesses.
	Offer annual education to providers about Health Insurance Portability and Accountability Act (HIPAA) regulations about family caregivers to address the perception that HIPPA prevents such communication.
	Promote services for persons with functional limitations in the least-restrictive setting appropriate to their needs by ensuring individuals and their family caregivers have access to information.
	Determine the types of information most requested by family caregivers and how best to deliver this information.
(2) Improve family caregivers’ access to services and supports (16 reports).	Close the gaps in caregiver support services, such as in rural areas.
	Expand Medicaid Home- and Community-Based Services (HCBS) waivers to support family caregivers and eliminate HCBS waiver waiting lists. Increase funding opportunities to include those not currently financially eligible for HCBS waivers.
	Promote consumer-directed and/or voucher models of service delivery to promote caregiver choice and assist caregivers in rural counties with limited provider options.
	Increase funding for the National Family Caregiver Support Program and the Alzheimer’s Disease Program Initiative.
	Increase access to affordable caregiver services and supports and ensure such services and supports are made available to a comprehensive range of family caregivers as described in the Older Americans Act.
	Create opportunities for family caregiver peer support.
	Explore options for using Title III funds to enhance dementia-care capabilities.
(3) Improve access to technology to better support family caregivers (11 reports).	Explore and promote market-based solutions for supporting caregivers, such as vouchers for services and supports and better technology to support older adults and caregivers.
	Fund innovative technologies that makes it possible for people to live independently for longer periods of time.
	Provide vetted information on available assistive devices. Explore a more comprehensive list of covered technology as well as tax relief for low- and moderate-income individuals and family caregivers who purchase them.
	Explore reimbursement for telemedicine, telehealth, and other technologies, and expand Medicaid coverage for telemedicine.
	Establish a clearinghouse at the US Administration for Community Living (ACL) on information technology, and improve awareness and availability of technologies to meet the needs of individuals and their family caregivers.
	Require that in-network provider directories include the availability of telehealth-delivered services and ensure telehealth services are available to all persons, regardless of insurer.
(4) Increase and strengthen the paid care workforce (13 reports).	Strengthen the training and capacity of health care and social service providers and case managers to provide caregivers with evidence-based supports, benefits information, and local services in the community.
	Reduce the shortage of and empower direct care workers — for example, through competitive wages, career ladders, integration into care teams, delegation of additional home care and medical tasks, and career advancement opportunities (especially in rural areas) and identify best practices in this area.
	Include a caregiver module in training programs for community health emergency medical services and community health workers.
	Examine options to build capacity and professional training tracks in the community care workforce, particularly initiatives to encourage retention of trained workers.
	Provide education through federal agencies and other organizations to the full range of care providers and family caregivers to build workforce capacity and to increase adoption of non-pharmacological treatments for behavioral and psychiatric symptoms of dementia and awareness of dementia-related issues.
	Allocate additional funding for the US Health Resources and Services Administration (HRSA) to support geriatric workforce training in dementia care and increase funding for education for paid and unpaid caregivers through HRSA and ACL grant funding.
	Encourage states to improve standards and/or establish a certification process for home care workers, and/or explore the development of national training standards for direct care workers.
	Educate medical practices transitioning to patient-centered medical homes and other health system transformations about caregiver roles and needs through regional health collaboratives.
(5) Address social determinants of  health to promote community living (11 reports).	Expand transportation options, including access to medical and/or non-medical transportation.
	Provide caregivers access to other support services, such as home modifications, assistive technology, transportation, and other support services.
	Maximize health promotion activities, age-friendly communities, and dementia-capable homes.
	Increase access to information on housing options, especially to ease transitions from nursing homes to home- and community-based settings and educate options counselors about housing options and how individuals can retain a safe home.
	Develop a framework to consider access to capital costs as a result of disability, such as vehicle and home modifications.
	Stimulate voluntary community efforts to livable communities and living in community by establishing a national clearinghouse on successful practices, providing small start-up funds and technical assistance for new model incubators, and additional research and evaluation.
	Support modernization of nutrition programs.
(6) Expand respite care (14 reports).	Increase availability of affordable respite, including in-home, out-of-home, vouchers, self-directed and culturally specific options, and consider offering a range of respite options, including volunteer and fee-for-service models, a mobile adult day care model for rural communities, and continuing/promoting the Lifespan Respite Care Program and the Family Caregiver Support Program.
	Implement a targeted outreach plan to identify and partner with faith-based and volunteer organizations to expand the number of free respite programs.
	Review and plan for the design and delivery of family caregiver services, including respite services across the lifespan and to individuals of all levels and types of care.
	Establish new funding for ACL respite programs, targeting the funding to underserved and high-risk populations and evaluating the programs’ reach and impact.
	Conduct research to address respite access and utilization among caregivers of color and within the LGBTQ community, cost-benefit analyses of respite services, collaborative decision-making between caregivers and persons with disability for respite care, and evaluation of cross-state difference in respite access and workforce in relation to caregiver outcomes.
	Develop a statewide respite registry.
	Consider establishing a respite care benefit within Medicare.
(7) Expand family caregiver and long-term services and supports financing (9 reports).	Direct the Centers for Medicare & Medicaid Services (CMS) to develop, test, and implement provider payment reforms that motivate providers to engage family caregiver across all models of payment and models of care; test person- and family-centered payment models to include long-term services and supports that would pay providers based on the service provided rather than the site of care.
	Explore the implementation of a Medicaid HCBS program focused on individuals at-risk of entering nursing facility level of care.
	Create a demonstration project to provide workers with disability coverage for the long-term services and supports that they need to remain employed.
	After grant funding by ACL ends for successful demonstrations, direct CMS to continue funding these programs through waivers or other mechanisms.
	Create a plan to expand long-term care insurance coverage, which could include educating citizens, expanding tax credits for policyholders and employers who provide some level of benefit, and providing subsidized plans to state employees.
	Assist states in developing a more uniform Medicaid buy-in program that would allow individuals with significant disabilities to remain in the labor market and optimize employment opportunities, including across state lines.
	Create care and payment models for evidence-based interventions, such as those that bridge clinical health care with care in nursing homes and community settings.
	Eliminate the Medicare three-day hospital stay requirement for skilled nursing facility coverage.
	Revise the Medicare requirement that the individual be “homebound” in order to receive home health services.
Goal 2.   Recognize, include, and support family caregivers as key partners in the provision of health care and long-term services and supports.
(1) Promote identification and assessment of family caregivers for their own needs (16 reports).	Identify an assessment tool(s) and/or implement processes that can be used to determine caregiver needs and competencies to assume and maintain caregiver responsibilities.
	Address families’ diversity in assessing caregiver needs.
	Focus assessment on the needs of both the people being cared for and their family caregivers, rather than solely based on the diagnosis of the person being cared for.
	Develop, test, and implement mechanisms within Medicare, Medicaid, Veterans Affairs, and/or state-funded programs to ensure that family caregivers are routinely identified, and their needs assessed and supported.
	Urge CMS and/or other agencies to consider assessment of family caregivers’ needs and the inclusion of the family caregiver in a care or discharge plan that involves them.
	Strengthen the navigation and coordination functions of local agencies in conjunction with the family caregiver assessment.
	Reimburse health care providers for conducting caregiver assessments via government and other third-party payers.
(2) Improve care coordination and ensure informed care transitions between providers and care settings (15 reports).	Develop, implement, and/or review care management standards, hospital discharge planning, and risk assessment process to better involve family caregivers.
	Implement a targeted outreach plan to educate the public and partners, including physician groups, hospital discharge planners, home health agencies, and community-based organizations providing personal assistance about family caregiver needs and processes for referrals.
	Implement care procedures for hospitals and primary care practices serving people with dementia.
	Explore care coordination improvement efforts to determine if there are ways to better support the needs of family caregivers as the care recipient transitions from hospital to home, rehabilitation, and/or hospice.
	Integrate family caregivers into the health care team so they are included in the decision-making process about their family member’s health and medical care, including access to medical records, training, and information and support.
	Support electronic health records to provide a standardized care plan between settings of care and to identify family caregivers in them, especially when they are a part of the care plan. With permission, grant family caregivers access to these records.
	Explore alternative payment models such as Accountable Care Organizations and physician payment reforms so as to better coordinate care.
	Obtain feedback from caregivers about the transition from clinical care to home- and community-based services.
Goal 3. Protect, promote, and enhance financial and workplace security of family caregivers.
(1) Enhance financial security and employment policies for family caregivers and prohibit discrimination against caregivers in workplaces (12 reports).	Evaluate and potentially adopt policies to support working caregivers through flexible work schedules, paid or unpaid leave, workplace assistance programs, and financial and legal assistance.
	Raise employers’ awareness of caregiving and older workers to promote workplace flexibility and explore, evaluate, continue, and/or mandate policies for flexible work arrangements.
	Expand the minimum requirements of the Family and Medical Leave Act by covering workers in businesses with fewer than 50 employees, expanding the definition of family member, allowing employees to take family members to medical appointments, decreasing the time an employee must work before becoming eligible, and increasing the length of leave allowed.
	Design and establish tax credits for qualified caregiving expenses and/or making family caregivers eligible to receive payments for some of their caregiving hours.
	Evaluate federal, state, and business outreach strategies to inform employees of their rights to access FMLA, assess specific strategies to increase knowledge among workers who are younger, low-income, and/or people of color, and conduct longitudinal studies of labor force trajectories and household economics of family caregivers who access FMLA.
	Enact legislation that prohibits discrimination against caregivers in the workplace.
	Model government workplaces with flexible working arrangements and portals for information about family caregiving.
	Explore tax credits for private sector employers who offer 12 weeks of paid family medical leave.
	Consider creating tax concessions or rebates to items, such as medication, therapy, aids, and equipment.
	Tie tax credits to caregiver participation in evidence-based programs that increase caregiver skills and knowledge, and provide vouchers for care recipients to pay minimum wage to family caregivers upon completion of required training.
Goal 4. Promote research, identification, and adoption of evidence-based practices in caregiver support.
(1) Promote and disseminate promising and evidence-based  practices (18 reports).	Work with culturally and ethnically diverse communities to develop services and models that best meet their needs.
	Expand and replicate programs to new populations, disability types, and life course stages by promoting person-centeredness and self-direction and enhancing peer-led interventions across the lifespan with a focus on future planning.
	Encourage the use of evidence-based care coordination programs along with caregiver assessments.
	Scale up successful, evidence-based person- and family-centered care and transition programs by having CMS, the Veterans’ Affairs (VA), and states work together. For example, by adopting interventions developed in one setting (the VA) or with one disability type (dementia) for a more general population and by promoting interventions developed in one community or state on a national scale.
	Expand caregiver interventions based on evidence of their benefit, including volunteer efforts through volunteer networks, a “caregiver corps,” or modification of senior corps.
	Establish guidelines and best practices for warm hand-offs between aging and disabilities resource centers and provider networks.
	Review the design and delivery as well as potential increases in resources or repurpose existing funds for targeted family caregiver services for improving skills, decreasing stress, and promoting choice in respite options based on evidence-based and model programs.
	Initiate multi-site demonstration projects within the CMS Innovation Center to test the effectiveness of evidence-based programs.
	Encourage government and consumer agencies to ensure best practices on options counseling are disseminated and/or encourage a more rapid and widespread adoption of successful evidence-based person- and family-centered integrated care pilots.
	Broaden the availability of the Powerful Tools for Caregivers Program as well as other evidence-based training programs.
	Encourage health plans to recognize and gain feedback from family caregivers as their involvement can ensure better quality of care.
	Develop and test models of residential supports that are dementia-capable for both adults with intellectual developmental disabilities and older adults with dementia.
	Increase funding for programs that provide explicit supportive services for family caregivers to facilitate evidence-based care intervention programs.
	Establish a national resource center and technical assistance networks promoting evidence-based caregiver practices.
	Improve quality across long-term services and supports by encouraging measurement development for HCBS and family experience of care, especially when caring for people with Alzheimer’s disease or other cognitive or intellectual disabilities.
	Work with states to establish a system to publish quality measures that are understandable to consumers, develop payment incentives and value-based purchasing of services based on quality, and develop provider accreditation and certification based on quality.
	Adopt a standard of care that offers a menu of service options and interventions to address the needs of caregivers based on their levels of risk (e.g., revamp the National Family Caregiver Support Program to ensure the provision of evidence-based programs).
	Accelerate the development of measures on family experience of care, especially when caring for people with Alzheimer’s disease and other cognitive or intellectual disabilities.
(2) Improve and increase available data on family caregivers (11 reports).	Monitor, track, and evaluate state approaches to family support services and caregiver outcomes by collecting data on demographics of caregiving situation, impact on families, and family supports.
	Generate better, consistent data through development of a core set of family caregiver questions that could be added to national surveys.
	Expand the information collected on family caregivers including demographics, prevalence and nature, costs of care, health status, specific needs of diverse/multicultural caregivers, and level of unmet need.
	Expand data collection infrastructures within the departments of Health and Human Services, Labor, and/or Veterans Affairs to monitor, track, and report on the experience of family caregivers.
	Review the number of caregivers who are aging out/dying with no resource in place for their care recipient who has been dependent on their care.
	Collect more information and analysis on the statewide No Wrong Door system and the coordination between it and the National Family Caregiver Support Program.
	Require states to adopt the Behavioral Risk Factor Surveillance System’s caregiver module as part of Older Americans Act funding.
	Develop a National Data Collection Initiative with consistent and uniform data to identify families and people with intellectual/developmental disabilities and the cost-effectiveness of supporting them across local, state, and federal systems.
(3) Improve family caregiver research and development (14 reports).	Study caregiving across the lifespan and close the service gaps, especially related to unique concerns such as rural caregiving.
	Conduct research on care, services, and supports for persons with dementia and their caregivers with a focus on building an evidence base for services and supports.
	Study caregiver interventions and document return on investment in caregiver supports to determine effectiveness in sustaining family caregivers and limiting costs of institutional care.
	Design studies to include family caregivers across racial and ethnic populations by oversampling underrepresented groups as well as examining and comparing their outcomes across groups.
	Increase research to support people with intellectual developmental disabilities and dementia by examining dementia-friendly communities and the degree of family caregiver supports associated with living out-of-home dementia care of adults with intellectual developmental disabilities.
	Develop family support research on consumer direction, including impact of consumer direction on both adults with disabilities and family caregivers, efficacy of paying family caregivers, caregiver needs, and service utilization.
	Assess the utility of the National Family Caregiver Support Program to caregivers within and across states.
	Establish a public-private, multi-stakeholder innovation fund and launch a multi-agency research program addressing the needs of caregiving families.
	Understand family caregiver outcomes in relation to local state and federal disability employment policies and programs.
	Include family caregivers within research into caregiver isolation.
	Conduct a state-by-state study on programs and policies outlined in the RAISE Act, including person- and family-centered care, assessment and service planning, information, training, care coordination, respite care, and financial and workplace issues.
Goal 5.   Strengthen program administration, governance, and collaboration among all appropriate stakeholders to build a society that recognizes family caregivers.
(1) Strengthen governance and collaborations to support family caregivers (8 reports).	Include family caregivers in all planning efforts and responses to federal, state, and private initiatives in long-term services and supports in a formalized process within service design.
	Create a state plan for supporting family caregivers.
	Advance a national agenda to support families across the lifespan by recognizing the role of families and underscoring the need to support families within key federal policies and national programs.
	Convene the White House Conference on Aging to allow for the participation of states and other constituents to focus on long-term services and supports improvements.
	Explore collaborations with the Corporation for National and Community Service and other entities to leverage resources for caregiver support.
	Establish a national office for caregivers to oversee the development of nationally coordinated caregiver policies, programs, and services.

National Family Caregiving Reports

• Bipartisan Policy Center. “Initial Recommendations to Improve the Financing of Long-Term Care.” February 2016. 
• Caldwell, Joe and Katie Arnold. “Recommendations to Improve Data Collection to Monitor, Track, and Evaluate State Approaches to Family Support Services.” March 2016. 
• Family Caregiver Alliance. Caregiver Assessment: Principles, Guidelines and Strategies for Change, Report from a National Consensus Conference. 2006. 
• Grossman, Brian R. ScM, PhD, Magana, Sandra MSW, PhD, et al. “Research on Family Caregiving Support in the United States: A Strategic Plan.” September 2018. 
• Hecht, E., Reynolds, M., Agosta, J., & McGinley, K. “Building an Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities. Report of the Wingspread Conference on Building a Family Support Agenda.” 2011. 
• Heller, Tamara, Scott, Haleigh, and Janicki, Matthew P.; “Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities. Caregiving, Intellectual Disability, and Dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities”. New York, July 10, 2018.  
• National Academies of Sciences, Engineering, and Medicine 2016. “Families Caring for an Aging America.” Washington, DC: The National Academies Press, 2016.  
• National Alzheimer’s Project Act Advisory Council. “NAPA LTSS Subcommittee 2019 Recommendations.” 2019.  
• Office of the Assistant Secretary for Planning and Evaluation. “Research Recommendations.” September 29, 2017.  
• Office of the Assistant Secretary for Planning and Evaluation. “Report to the National Advisory Council on Alzheimer’s Research, Care, and Services.” May 16, 2018.  
• Reinhard et al. Home Alone Revisited: Family Caregivers Providing Complex Care. 2019. 
• Rosalynn Carter Institute for Caregiving. “Averting the Caregiving Crisis: Why We Must Act Now.” October 2010. 
• United States Senate Commission on Long-Term Care. “Commission on Long-Term Care: Report to the Congress.” Washington, DC: September 30, 2013. 

State Family Caregiving Reports 

Alabama 

Alabama Caregiver Task Force. “A Voice for Alabama Caregivers.” May 1, 2019. 

California 

The California Task Force on Family Caregiving. “Picking up the Pace of Change in California.” July 2018. 

Delaware 

Family Caregiving Task Force. “Caregiver Support Blueprint for Delaware.” May 31, 2015. 

Idaho 

Idaho Family Caregiver Task Force and the Idaho Caregiver Alliance. “Caregivers in Idaho.” December 2015. 

Indiana 

Family and Social Services Administration-Division of Aging. “Indiana State Plan on Aging.” April 2018. 

Kentucky 

Legislative Research Commission. “Supports for Family Caregivers of Elders.” December 2014. 

Maryland 

Task Force on Family Caregiving and Long Term Supports. “2016 Final Report.” 2016. 

Minnesota 

Minnesota Board on Aging. “Policy Brief: Caregiving.” October 2017. 

Mississippi 

Caregivers Task Force. “Caregiver Support Blueprint for Mississippi.” 2014. 

New Mexico 

The New Mexico Aging and Long-Term Services Department. “New Mexico State Plan for Family Caregivers.” 2015. 

North Dakota 

North Dakota State University. “North Dakota Caregiver Supports and Service Study.” May 10, 2016. 

Texas 

Texas Health and Human Services Commission. “A Profile of Informal Caregiving in Texas.” February 2017. 

International Family Caregiving Reports 

Australia 

House of Representatives, Standing Committee on Family, Community, Housing, and Youth. “Who Cares…? Report on the Inquiry into Better Support for Carers”. April 2009. 

New Zealand  

National Advisory Committee on Health and Disability. “How Should We Care for the Carers, Now and into the Future? Wellington: Ministry of Health. 2010.