Respite Offers a Break for Caregivers and Those They Support

“Putting the needs of everyone else before your own may solve an immediate stress; however, in the long-term, it can lead to increased anxiety, frustration, overwhelming feelings, resentment, depression, burnout, and even illness. Whether you think of yourself as a caregiver or not, these are all signs of caregiver stress.”

Modern families come in many styles. Primary caregivers may be parents or spouses or adult children, and they might be other relatives (kinship providers), friends, or neighbors. “Care recipient” is a term for anyone who requires assistance for daily living. “Caregiver” refers to anyone who provides regular assistance to a child or adult with chronic or disabling conditions.

Time apart can boost well-being for all: While caregivers temporarily shift their focus to self-care, care recipients have time to meet new people and explore new interests.

Finding an appropriate respite service and organizing payment can feel challenging. This article offers guidance to simplify the steps.

Check standards and safety measures

When researching a respite agency, caregivers can check whether the agency meets standards and is following appropriate safety measures.

Lifespan Respite Washington provides a checklist with questions to consider. Here are a few examples:

• How are the workers selected and trained?
• Can the respite worker give medicine or help with medical tasks?
• If the provider will be driving the care recipient, do they have a valid driver’s license? Is the company insured to have their workers do that?
• How are emergencies and problems handled?

Registered, publicly funded respite providers are need to meet certain standards and qualifications, including background checks and training. The public agency that pays for the service is responsible to track and share information about those procedures and quality measures. If respite is paid for by private medical or long-term care insurance, providers must meet the insurance company’s standards. Caregivers can ask an insurance company representative to explain the standards and how they are upheld.

Another helpful resource: the ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help.

Respite includes a broad range of services. Some organizations offer short-term, overnight stays in their facilities and some offer daytime services. Some respite services are delivered in the home, like:

• personal hygiene care
• meal preparation
• light housekeeping
• companionship, activities, or supervision

Community Living Connections (CLC) provides an online tool to help caregivers figure out what type of help they may want or need. Washington State’s CLC is part of a national collaborative that includes the U.S. Department of Health and Human Services, the Veterans Administration, and the Centers for Medicare & Medicaid Services.

Washington’s Pathways to Respite booklet includes “fill-in-the-blanks” tools to help define needs, like these examples:

“I would like to take a break, but I am concerned that___________” and “If I had some time to myself, I would _____________.”

Pathways to Respite was developed by Informing Families, a resource of the Washington State Developmental Disabilities Council, in partnership with the Washington State Developmental Disabilities Administration, Aging & Long-Term Support Administration, and PAVE, which administers Lifespan Respite WA.

If a family will pay directly for respite services, they can find respite providers online. Here are some suggestions to launch a search:

• “Adult Day Services Washington State”
• “After-school programs children with special health care needs Washington State”
• “In-home care agencies near me”

Another way to navigate the provider system is to connect to a website managed by SEIU 775:  The Service Employees International Union consists of independent service providers who have a collective bargaining agreement with Washington state’s Department of Social and Health Services (DSHS). This is one way to find an independent respite worker (usually for in-home care) that meets WA State qualifications for the work.

Care.com is a private, online service connecting respite or personal care workers with potential care recipients and their families. Families are on their own to follow up on an individual workers qualifications, references, and background, although some listings will show someone has passed a background check.

If a care recipient is eligible for respite through private medical insurance, the insurance company will list approved providers or caregivers may call their insurance company representative.

Publicly funded respite programs also have lists of registered providers. Family caregivers who have respite funding through Medicaid or the Developmental Disabilities Community Services (DDCS) can use CarinaCare.com, an online tool to connect individuals with providers. A Who’s Who page describes the provider’s qualifications.

Lifespan Respite WA provides information about how to apply for a voucher. Vouchers are “mini-grants” for unpaid caregivers supporting a family member, friend or neighbor who has a special need or condition. The vouchers, up to $1,000 per qualifying household, can be used with any of the registered Lifespan Respite Providers listed on their website.

To qualify, the caregiver or care recipient can not be enrolled in a Medicaid respite or personal care program through DDCS (formerly DDA). (Exceptions are made for people on a waiting list and not scheduled to get respite services within 30 days of applying for a Lifespan voucher.) Additionally, a caregiver must:

• Not be paid to care for the care recipient
• Give 40 or more hours a week of care
• Not get respite from any other program
• Live in Washington State
• Can’t afford to pay privately for respite care

In Washington State, eligibility for free or low-cost respite services may depend on a person’s circumstances or the category of disability.

• Seniors and Adults with Disabilities
  • Seniors 65 and older who meet functional and financial eligibility can get a variety of services through Department of Social and Health Services Home and Community Services Administration (HCSA).
  • Unpaid caregivers of adults 55 and older who meet functional and financial eligibility can get respite care and other needed support services like caregiver education, support groups, housework and errands and other services.
  • The easiest way to learn about services and eligibility is to contact the county or regional Area Agency on Aging, which administers many of HCSA’s services. They are also listed at Washington’s Community Living Connections/waclc.org.

• People with Developmental Disabilities (All Ages) and Children with Disabilities
  • Children and adults with developmental disabilities who meet eligibility criteria for Developmental Disabilities Community Services (DDCS) might get respite, personal care, assistive technology, community engagement support, and other services provided through Home and Community-Based Services and Community First Choice (CFC).
  • Children with disabilities who are not DDA eligible may still get CFC through DDA.

• Learn about enrollment for DDCS services and the application process.
• Review the Washington Waiver Factsheet, which describes Medicaid waiver programs and who may qualify.
• Locations are listed on the website of Washington’s Community Living Connections/waclc.org.

Respite care is available for foster parents licensed by the Division of Licensed Resources (DLR), a Tribal agency, or a Child Placing Agency (CPA). Unlicensed relative caregivers or those determined to be “suitable person placements” also can get respite, as can caregivers assigned by the Department of Children, Youth, and Families (DCYF) or a Washington Tribe. 

Child Specific Respite (CSR) is linked directly to the medical, behavioral, or special needs of an individual child. CSR authorizes respite relief to families providing care to a child placed by DCYF on a case-by-case basis, consistent with the written service plan for the child.

Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. PCAFC offers up to 30 hours of respite: Program options, eligibility and the application process are described in a downloadable booklet published Oct. 1, 2020.

Active-duty military and Activated Reserve or National Guard family caregivers may be eligible for respite care through TRICARE, the military healthcare system. Here are resources for military family caregivers:

• Respite care for primary caregivers of service members injured in the line of duty can be found on the TRICARE website.
• Extended Care Health Option (ECHO) can be a respite resource for caregivers of non-military family members.
• Some installations have respite funding available when the care recipient is enrolled in the Exceptional Family Member Program.
• Coast Guard family caregivers have the Special Needs Program which may offer respite or funding for respite:
• Coast Guard Mutual Assistance has Respite Care Grants available for eligible Coast Guard clients who have responsibility 24 hours per day to care for an ill or disabled family member who lives in the same household.