Respite Offers a Break for Caregivers and Those They Support

A Brief Overview

  • Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services.
  • Lifespan Respite Washington, a program of PAVE, provides vouchers with up to $1,000 per qualifying household, to fund respite care.
  • Pathways to Respite, an online booklet published by several Washington agencies, provides further guidance. The guidebook defines caregiver stress and explains why breaks are critical to everyone’s well-being.
  • 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. The ARCH resource center also provides information and resources specific to Respite During COVID-19.
  • Military families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. The final section of this article includes additional military-specific resources.

Full Article

Modern families come in many styles. Primary caregivers may be parents, 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 a chronic or disabling conditions.

Caregivers and care recipients develop unique rhythms and relationships. Sometimes, both need to press pause and reset. Pathways to Respite, an online booklet published by several Washington agencies, provides guidance about caregiver stress:

“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.”

Respite offers a short-term break for caregivers and those they support. 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 provides guidance to simplify the steps.

Check standards and safety measures

When researching a respite agency, caregivers can assess whether the agency meets standards and is following appropriate safety measures, especially during the COVID-19 pandemic.

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 administer medications or assist with medical tasks?
  • If the provider will be driving the care recipient, do they have a valid driver’s license?
  • How are emergencies and problems handled?
  • What safety measures are in place to protect against COVID-19?

Registered, publicly funded respite providers are required 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.

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. The ARCH resource center also provides information and resources specific to Respite During COVID-19.

What respite services would be most helpful?

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

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

Community Living Connections (CLC) provides an online assessment 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, including the following example:

“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.

Determine payment to choose a provider

If a family will pay directly for respite services, providers are easily found 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 respite care Washington State

Another way to navigate the provider system is to connect to a website managed by SEIU 775:  The Service Employees International Union is comprised of independent service providers who have a collective bargaining agreement with Washington state’s Department of Social and Health Services (DSHS).

If a care recipient is eligible for respite through private medical insurance, the insurance company will list approved providers.

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

Vouchers are available from Lifespan Respite WA

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

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

  • Be unpaid
  • Provide 40 or more hours a week of care
  • Not receive respite from any other program
  • Live in Washington State
  • Be unable to afford to pay privately for respite care

Who qualifies for free or low-cost 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 receive a variety of services through Home and Community Services (HCS).
    • Unpaid caregivers of adults 55 and older who meet functional and financial eligibility can receive respite care and other needed support services like caregiver education, support groups, housework and errands and other services.
  • People with Developmental Disabilities (All Ages) and Children with Disabilities
    • Children and adults with developmental disabilities who meet eligibility criteria for Developmental Disabilities Administration (DDA) may be able to receive 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 be able to receive CFC through DDA.

How to apply:

Foster care respite

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 receive 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.

Veterans and Military Family Caregivers

Military 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.

The Elizabeth Dole Foundation and the U.S. Department of Veterans Affairs offer Respite Relief for Military and Veteran Caregivers, no-cost, short-term relief with the help of in-home care professionals. See Hidden Heroes for further information.

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.

Census 2020: Submit Your Response to Ensure Schools and Other Programs get Funding

The United States Census collects information to figure out how to spend about $1.5 trillion each year. Communities get federal money based on how many people of various ages live there. Money for special education, foster care, children’s health insurance and many other programs is distributed more fairly when the federal government has an accurate count of people living in each community.

The federal government counts citizens only every 10 years, so communities where people are undercounted might not get the money they need for a full decade. According to Count All Kids, the 2010 U.S. Census missed more than 10 percent of children under age 5. Count All Kids provides materials to help families understand why submitting accurate information is important. If a two-year-old isn’t included as a household member, for example, the community will have less money for education, childcare, and other services until that child has a chance to be counted at age 12.

A one-minute YouTube video with Sesame Street characters is a family-friendly way to learn more about Census 2020. For another musical take on why an accurate count is critical, talk show host and comedienne Samantha Bee shared a song about the Census by Baltimore rapper TT The Artist on her stay-home version of the show, Full Frontal.

The National Association for Family, School and Community Engagement (NAFSCE) provides materials to help families understand how to complete their census forms and why their accurate response is important. A recorded webinar from March 30, 2020, is available on YouTube: The 2020 Census and Equity – Why It Matters and How You Can Help.

Minority communities suffer when children aren’t counted

NAFSCE notes that poor and racial minority communities tend to suffer most when families don’t count their children: “Young children had by far the highest net undercount of any age group in the 2010 census. Black and Hispanic children are missed at more than two times the rate of white children.”

Homes received Census forms in the mail this winter/early spring. The questions take about 10 minutes to answer and the responses can be filed online, by phone, or by mailing in a paper form.

In Washington, the Office of Financial Management oversees a Complete Count Committee to help the public access and submit forms to include all members of their family. The state’s website includes a map of legislative districts that are drawn based on Census data and other information about programs that are impacted by the numbers:

“For every 100 households missed in the 2020 Census count, the state could lose up to $5.8 million, which would affect the ability to support children, veterans, senior citizens and middle- and low-income families adequately. An accurate count of Washington’s communities will ensure the fair distribution of taxpayers’ funds and political representation.”

Household information is confidential

On pages that address questions and concerns of families, the Office of Financial Management includes information about confidentiality and privacy protections: 

“The Census Bureau collects data for statistical purposes only. It combines your responses with information from other households or businesses to produce statistics, which never identify your household, any person in your household, or your business. Your information is confidential. By law, the Census Bureau will never identify you individually.

“Title 13 of the U.S. Code protects the confidentiality of all your information and violating this law is a crime with severe penalties. In addition, other federal laws, including the Confidential Statistical Efficiency Act and the Privacy Act, reinforce these protections. The penalty for unlawful disclosure is a fine of up to $250,000 or imprisonment of up to 5 years, or both.”

Beware of scams: Use official forms from snail mail

CensusOutreach.org provides a timeline for 2020 reporting. Families receive notifications by mail and are encouraged to submit response by the end of April. The last day for households to self-respond online, by phone or by mail is July 31, 2020. The Census Bureau will not email or text people for the 2020 Census and encourages people to beware of scams: Do not open or respond to any links sent by email or text that reference the Census. Official forms come through U.S. Mail.

Hard to Count Maps 2020 provides an interactive map that shows how various states are doing in collecting census data and provides state-by-state details about return rates and where to go for further information. If online access is difficult, Washington families can contact the state Office of Financial Management by phone for more information: 360-902-0584.