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Resources for Family Caregivers

Essential Guides on Caregiving and Respite:

NEW, Updated Family Caregiver Handbook . This downloadable handbook is specific, detailed, and practical, written for WA State residents by the Aging and Long Term Support Administration at Washington State Department of Social and Health Services. Topics include, but aren’t limited to: Daily care, dementia care, home safety, planning for future needs, and  where to get personal support for you, the caregiver!

Finding Respite (Respite Offers a Break for Caregivers and Those They Support :  Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.

Pathways to Respite Toolkit : This online tool offers definitions, information, resources, and check-lists for care givers in WA. The Pathways to Respite Toolkit is a good place to start conversations among families, for care givers, and to support one another. 

A Family Caregiver Decision Guide: This downloadable or online guide leads you through essential steps to help families make decisions about a family member’s care.

Planning for Lifelong Care: Guiding Questions for Transgender and Non-binary People to plan for Dementia and Other Serious Illnesses. An online resource from Transgender Law Center.

Recorded Webinar on this topic, from SAGE National Resource Center on LGBTQ+ Aging

How to Choose a Respite Provider (ARCH National Respite Network and Resource Center), part of The ABCs of Respite-A Consumer Guide for Family Caregivers (online or pdf download)

Trualta WA Caregivers’ Learning Portal: Log in (or register if it’s the first time) and click on the Learning Tab at the top of the main website page. Scroll down to click on the +Filters button on the right, to select the topic of your interest.

Connect with Other Caregivers for Support

Family Caregiver Support Program: offered through Aging and Disability Resource Centers throughout WA State. Contact information for support groups and other services.

Kinship Caregiver Support Groups: If you are raising a child of a relative or friend you can connect with other kinship caregivers in your region through the Kinship Care Supports and Services at Washington’s Department of Social and Health Services. Contact information for support groups and other Kinship caregiver supports is listed by county or region.

Parent to Parent Support Program: Well-known WA State branch of the national organization offers county or regionally-based support groups, 1:1 support matches with trained parent volunteers who have similar caregiving situations with their children, in-person events, newsletters, and much more.

Trualta WA Caregivers’ Learning Portal: offers both time-limited and ongoing support groups, generally topic-based. Some groups are always anonymous, others give the option to join with or without your camera on. Log in (or register if it’s the first time) and click on the Events tab. You can sign up to get the monthly newsletter with a schedule of all support group meetings and upcoming live webinars.

Financial Help for Caregivers in WA State

Informing Families is a website of the Washington State Developmental Disabilities Council, in partnership with the Developmental Disabilities Administration. Information on services (which may include respite) available through WA State’s Medicaid Waiver Programs for individuals with Intellectual or Developmental disability.

Family Caregiver Support Program offered through Aging and Disability Resource Centers throughout WA State: sliding-scale respite care is offered at some of these programs when funding permits. Contact information for respite and other services.

Finding Respite (Respite Offers a Break for Caregivers and Those They Support):  Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.

Financial Support for Caregiving. Being a caregiver for a family member or friend comes with unexpected costs. 4 short articles and videos help family caregivers find financial support options in Washington State:

Medicaid or Medicare, Which Covers Long-Term Care? A short and specific comparison for individuals and family caregivers on which services are covered by each program. Courtesy of Pierce County Washington’s Aging and Disability Resource Center (ADRC), part of the Aging and Disability Resource Centers network across WA State. Find your area’s ADRC at Community Living Connections.

WA State and Federal Benefits for Kinship Caregivers at WA’s Department of Social and Health Services.

Safe Living at Home

The HomeFit Guide from AARP: “The AARP HomeFit Guide was created to help people live safely and comfortably in their home by enabling where they live to be a “lifelong home,” suitable for themselves and others in their household, no matter a person’s age or life stage.” Visit AARP.org/HomeFit for related resources and to download or order a print copy of the AARP HomeFit Guid, available in English, Español (Spanish), 中国人 (Chinese), 한국인, (Korean) and Tiếng Việt (Vietnamese).

How-to Caregiving Videos: Learning Videos for Adult Care at Home, AARP. Covers all the essential topics to help with adult and senior care activities in the home

Trualta WA Caregivers’ Learning Portal: Log in (or register if it’s the first time) and click on the Learning Tab at the top of the main website page. Scroll down to click on the +Filters button on the right, to select the topic of your interest. This site has a wider range of topics and methods to learn than the AARP site above but filtering your search is important.

Caregivers in Certain Categories

Kinship Caregivers

Kinship families are families where children live with and are being raised by grandparents, other extended family members, or adults with whom they have a close family-like relationship such as close family friends. Even though most of the challenges that come with raising children are the same for a kinship family, there are two important differences:

Kinship caregivers do not have automatic legal rights and responsibilities for the children. Raising children when they are not the child’s parent was not necessarily planned or expected. It’s often related to a family crisis, and the child welfare system is not always involved.

Kinship caregivers can often use help with practical issues for a suddenly larger family: big enough housing, food expenses, ensuring medical care, and registering children at a different school. Legal issues may come up–powers of attorney to get things done, custody, guardianship of the children, parental rights and visitation.

WA State Supports for Kinship Families

Temporary Caregivers of Military Children: Guide to Essential Information

LGTBQIA+ Caregivers

SAGE, Advocacy & Services for LGBTQ+ Elders, (organization, website) says “We’re a national advocacy and services organization that’s been looking out for LGBTQ+ [their acronym] elders since 1978. We build welcoming communities and keep our issues in the national conversation to ensure a fulfilling future for all LGBTQ+ people”. Among their many resources and program areas is the National Resource Center on LGBTQ+ Aging, covering: Caregiving, LGBTQ+ inclusion and cultural competency, Elder abuse and neglect, Social security, Medicare, and Medicaid, Health care, Financial security and retirement, Housing, HIV/AIDS.

Military and Veteran Caregivers

Exceptional Family Member Program: Provides all four military branches with care and respite support for families with a member who has a special need or disability. When military respite is not available, military families should know they are also eligible to apply for civilian respite services while living in Washington State. See also: Finding Respite in Washington State.

Coast Guard Special Needs Program: provides Coast Guard family members who have special needs or a disability with care and support. Coast Guard families may also apply to civilian sources of respite care in Washington State. See also: Finding Respite in Washington State.

Your branch of service may have branch-specific resources for respite. Contact the Exceptional Family Member Family Support Office at your nearest installation or Coast Guard Special Needs Program by phone or email.

Veterans Affairs offers two different programs which support family members caring for a veteran. Both offer training and a wide range of supports such as peer mentor support (a caregiver who has ‘been there’ and can help you navigate caregiving), one-on-one or group coaching sessions, resource referral, and respite care.

Program of General Caregiver Support Services (PGCSS)

“PGCSS is the core of VA’s Caregiver Support  Program (CSP). The program provides peer  support mentoring, skills training, coaching,  telephone support, online programs, and referrals to available resources to caregivers of Veterans. The Veteran must be enrolled in Department of Veterans Affairs (VA) health care and be receiving assistance from a caregiver  in order for the caregiver to participate.”

Program of Comprehensive Assistance for Family Caregivers (PCAFC)

“PCAFC offers enhanced clinical support and services for caregivers of eligible Veterans who have a serious injury (or illness) and require in-person personal care services among other requirements. 

Eligibility Information; Apply for PCAFC; Frequently Asked Questions

To enroll, please reach out to the facility Caregiver Support Team or request a referral from the Veteran’s provider.” -from US Department of Veterans Affairs VA Caregiver Program.

American Indian and Alaska Native Caregivers

Lifespan Respite WA works to increase respite options for American Indian and Alaskan Native caregivers with direct input from Tribal organizations and members, as they have the knowledge and awareness of how to meet this need. The Lifespan Respite WA Voucher Program is open to all eligible American Indian and Alaskan Native caregivers.

Contacts for Tribal programs in WA State can be found on the ALTSA Tribal Affairs website at Washington’s Department of Social and Health Services (DSHS).

See also: Finding Respite (Respite Offers a Break for Caregivers and Those They Support):  Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.

Caregiver Resources for Some Medical Conditions

Alzheimer’s Disease and Down Syndrome, a Practical Guidebook for Caregivers

This guide helps family members and other caregivers by walking them through the importance and process of baseline assessments, possible symptoms, getting a diagnosis, and how to support their family member and themselves through all the stages of the disease. -created by the National Down Syndrome Society in partnership with the National Task Group on Intellectual Disabilities and Dementia Practices and the Alzheimer’s Association.

Children with Special Health Care Needs: These sites offer other types of help and resources:

Dementia Road Map-A Guide for Families and Care Partners is produced by Dementia Action Collaborative, WA.

“Let’s Talk Dementia“: Six brief videos featuring Washingtonians with dementia and their care partners, talking about the value of early diagnosis and what they suggest for living well with dementia. Courtesy of Dementia Action Collaborative.Tip Sheets for Dementia Care: family caregivers will appreciate these short informative one-page documents, which can be read online, downloaded, or printed. Available in English, Español (Spanish), and やまと(Japanese). Pick just the topic you need, or get them all in one document package (the package is in English and Spanish only at this time).

Alzheimer’s Disease and Down Syndrome, a Practical Guidebook for Caregivers

This guide helps family members and other caregivers by walking them through the importance and process of baseline assessments, possible symptoms, getting a diagnosis, and how to support their family member and themselves through all the stages of the disease. -created by the National Down Syndrome Society in partnership with the National Task Group on Intellectual Disabilities and Dementia Practices and the Alzheimer’s Association.

Children with Special Health Care Needs: These sites offer other types of help and resources:

Dementia Road Map-A Guide for Families and Care Partners is produced by Dementia Action Collaborative, WA.

“Let’s Talk Dementia“: Six brief videos featuring Washingtonians with dementia and their care partners, talking about the value of early diagnosis and what they suggest for living well with dementia. Courtesy of Dementia Action Collaborative.Tip Sheets for Dementia Care: family caregivers will appreciate these short informative one-page documents, which can be read online, downloaded, or printed. Available in English, Español (Spanish), and やまと(Japanese). Pick just the topic you need, or get them all in one document package (the package is in English and Spanish only at this time).

Organizations with Caregiver Resources

AARP is a nonprofit, non-partisan organization focused on older Americans. “AARP empowers people to choose how they live as they age. More than 100 million Americans are 50 or older, and people want their money, health, and happiness to last as long as they do. We are a wise friend and fierce defender, focusing on the priorities of older Americans.”
AARP’s website has a section of their website for family caregivers who care for older loved ones. Topics: Basics, Care at Home, Medical ,Financial and Legal, Life Balance

Aging and Long-Term Support Administration (ALTSA) (website) (for Washington State residents or caring for individuals who live in WA State): a very wide selection of services and supports, including Long-term Care Services and Information, a Local Services finder, Kinship and Tribal programs and services, and much more. Long-term Services and Supports covers care at home and in facility-based care. ALTSA is the State-level partner in the Lifespan Respite WA program and leads our Statewide Lifespan Respite Coalition.

Arc Washington, The: Information on the statewide Parent to Parent (P2P) program.

ARCH National Respite Network (website): ARCH assists and promotes the development of quality respite and crisis care programs; helps families locate respite and crisis care services in their communities; and serves as a strong voice for respite in all forums. Information, training, and connections for families and the professionals who serve them.

AANE  (Association for Autism and Neurodiversity-website) is focused on the autistic adult community, but there are also resources for and about youth and young adults. Their website has some articles and opinion pieces on the topic of adults with autism and caring for older adults with autism. They use identity-first language (“autistic adult”).

Community Living Connections WA State: Use this website to find all sorts of services and get answers to your questions about being a caregiver for an adult or elder. For example, on the home page is a search tool where you can put in your county and a keyword, such as “Adult Day Services”. The search will return a list of programs and companies in that county that offer adult day services.

This is also a site to find respite options available through publicly funded organizations such as Aging and Disability Resource Centers. Options may include expanded Medicaid options such as Tailored Support for Older Adults/Medicaid Alternative Care (for those not qualifying for Medicaid based on income) and COPES (Community Options Program Entry System); the Family Caregiver Support Program respite funding (may be based on sliding income scale), and other potential options for families who are not able to self-pay.

Informing Families is a website of the Washington State Developmental Disabilities Council, in partnership with the Developmental Disabilities Administration. Information on services (which may include respite) available through WA State’s Medicaid Waiver Programs for individuals with Intellectual or Developmental disability.

Family Caregiver Alliance (website): FCA has an extensive set of information for caregivers, with topics ranging from Advanced Illness through Out of Home Care and including Intimacy and Working with Siblings. Note: their website focuses on caring for adults. Many of their resources are available in several languages.

National Council on Aging offers BenefitsCheckup, a quick way to find resources in your state and/or community that can help support your older loved ones (or yourself!).

PAVE (website): Lifespan Respite WA is a program at PAVE, a statewide organization which provides support, training, information and resources to empower and give voice to individuals, youth, and families impacted by disabilities in Washington. Scroll up to the top of any Lifespan Respite WA page or post to see everything else PAVE covers-Learning in School, Parent & Family, Health & Wellness, Young Adults, and the Calendar of trainings, meetings, and events. Click on the button that says “Get Support” for information directly about your individual concerns. Note: It is the policy of PAVE to provide support, information, and training for families, professionals and interested others on a number of topics. In no way do these activities constitute providing legal advice. PAVE is not a legal firm or a legal services agency. Phone interpretation is available: Interpretación telefónica disponible — 提供電話口譯 — 전화 통역 가능합니다 — Доступен перевод по телефону — Waan kuu heli karnaa turjubaan telefoon ah — Có sẵn dịch vụ thông dịch qua điện thoại — توفر خدمة الترجمة الفورية عبر الهاتف.

ONEcaregiver Resource Center: (website) “A centralized platform to support caregivers and adults with intellectual and developmental disabilities who may be at risk of, or are living with, Alzheimer’s disease or related dementias”.