Tag: Lifespan respite

Self-Care is Critical for Caregivers with Unique Challenges

Posted on by Nicol Walsh

Caring for individuals with disabilities or complex medical needs can be emotionally and physically draining, making intentional self-care essential for long-term well-being.  Simple practices like mindfulness, getting enough sleep, going for a walk, or taking a few deep breaths can help reduce stress and build resilience. Talking to others who understand and finding time to rest can also help caregivers stay strong and healthy.

A Brief Overview

  • Self-care is not selfish. Self-care is any activity or strategy that helps you survive and thrive in your life. Without regular self-care, it can become impossible to keep up with work, support and care for others, and manage daily activities.
  • PAVE knows that self-care can be particularly challenging for family members caring for someone with a disability or complex medical condition. This article includes tips and guidance especially for you.
  • PAVE provides a library with more strategies to cultivate resilience, create calm through organization, improve sleep, and more: Self-Care Videos for Families Series.

Introduction

Raising children requires patience, creativity, problem-solving skills and infinite energy. Think about that last word—energy. A car doesn’t keep going if it runs out of gas, right? The same is true for parents and other caregivers. If we don’t refill our tanks regularly we cannot keep going. We humans refuel with self-care, which is a broad term to describe any activity or strategy that gives us a boost.

Self-care is not selfish! Without ways to refresh, we cannot maintain our jobs, manage our homes, or take care of people who need us to keep showing up. Because the demands of caring for someone with a disability or complex medical condition can require even more energy, refueling through self-care is especially critical for caregivers.

Two Feet, One Breath

Before you read anymore, try this simple self-care tool called Two Feet, One Breath. Doctors use this one in between seeing patients.

Two Feet, One Breath infographic. Calming practice that can help your mental health.

Download this infographic, Two Feet 1 Breath:
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Two Feet, One Breath can become part of every transition in your day: when you get out of bed or the car, before you start a task, after you finish something, or any time you go into a different space or prepare to talk with someone. This simple practice highlights how self-care can become integrated into your day.

Although a day at the spa might be an excellent idea, self-care doesn’t have to be fancy or expensive to have a big impact!

Almost everyone knows or cares for someone with special needs. According to the Centers for Disease Control (CDC), at least 28% of the American population experiences a disability. The result is widespread compassion fatigue, which is a way to talk about burnout from giving more than you get.

Below are some ways to use self-care to avoid burnout!

Connect with others

Building a support network with others who share similar life experiences can be incredibly valuable. When you’re going through a challenging or unique situation—like parenting a child with special needs or managing a family health issue—it can feel isolating. These connections offer emotional validation and a sense of understanding that can be hard to find elsewhere—you don’t have to explain everything because others simply get it. Research shows that social support can significantly reduce stress, anxiety, and depression, enhancing overall well-being and resilience. Beyond emotional comfort, support networks empower individuals by helping them build confidence, understand their rights, and even engage in advocacy efforts that benefit their families and communities.

Here are some communities and resources to help you get connected:

Parent-to-Parent Connections
The Parent-to-Parent network can help by matching parents with similar interests or by providing regular events and group meetings.

Support for Families of Youth Who Are Blind or Low Vision

Washington State Department of Services for the Blind (DSB) offers resources and support for families. You can also hear directly from youth about their experiences in the PAVE story: My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind.

Support for Families of Youth Who Are Deaf or Hard of Hearing
Washington Hands and Voices offers opportunities for caregivers of youth who are Deaf or Hard of Hearing (DHH) to connect, share experiences, and find community.

Resources for Families Navigating Behavioral Health Challenges
Several family-serving organizations provide support, education, and advocacy for caregivers of children and youth with behavioral health conditions: 

  • Family, Youth, and System Partner Round Table (FYSPRT). Regional groups are a hub for family networking and emotional support. Some have groups for young people.
  • Washington State Community Connectors (WSCC). WSCC sponsors an annual family training weekend, manages a Substance Use Disorder (SUD) Family Navigator training, and offers ways for families to share their experiences and support one another.
  • COPE (Center of Parent Excellence) offers support group meetings and direct help from lead parent support specialists as part of a statewide program called A Common Voice.
  • Dads Move ​works to strengthen the father’s role in raising children with behavioral health needs through education, peer support and advocacy.
  • Healthy Minds Healthy Futures is an informal network on Facebook.

PAVE provides a comprehensive toolkit for families navigating behavioral health systems, including guidance on crisis response, medical care, education, and family support networks.

Get Enough Sleep

The body uses sleep to recover, heal, and process stress. If anxiety or intrusive thinking consistently interrupts sleep, self-care starts with some sleeping preparations:

Move Your Body

Moving releases feel-good chemicals into the body, improves mood, and reduces the body’s stress response. Walk or hike, practice yoga, swim, wrestle with the kids, chop wood, work in the yard, or start a spontaneous living-room dance party.

The Mayo Clinic has this to say about exercise:

  • It pumps up endorphins. Physical activity may help bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, any aerobic activity, such as a rousing game of tennis or a nature hike, can contribute to this same feeling.
  • It reduces the negative effects of stress. Exercise can provide stress relief for your body while imitating effects of stress, such as the flight or fight response, and helping your body and its systems practice working together through those effects. This can also lead to positive effects in your body—including your cardiovascular, digestive and immune systems—by helping protect your body from harmful effects of stress.
  • It’s meditation in motion. After a fast-paced game of racquetball, a long walk or run, or several laps in the pool, you may often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety.

Be Mindful

Mindfulness can be as simple as the Two Feet, One Breath practice described at the top of this article. Mindfulness means paying attention or putting your full attention into something. Focusing the mind can be fun and simple and doesn’t have to be quiet, but it should be something that you find at least somewhat enjoyable that requires some concentration.  Some possibilities are working on artwork, cleaning the house or car, crafting, working on a puzzle, cooking or baking, taking a nature walk, or building something.

For more mindfulness ideas, check out PAVE’s Mindfulness Video Series. From this playlist, Get Calm by Getting Organized, explores how getting organized provides satisfaction that releases happiness chemicals and hormones.

Schedule Time

A day can disappear into unscheduled chaos without some intentional planning. A carefully organized calendar, with realistic boundaries, can help make sure there’s breathing room.

Set personal appointments on the calendar for fun activities, dates with kids, healthcare routines, and personal “me time.” If the calendar is full, be courageous about saying no and setting boundaries. If someone needs your help, find a day and time where you might be able to say yes without compromising your self-care. Remember that self-care is how you refuel; schedule it so you won’t run out of gas!

Time management is a key part of stress management! This article, “Stress Management: Managing Your Time” from Kaiser Permanente, gives tips for managing your time well, so you can reduce the pressure of last-minute tasks and make space for the things that matter most to you.

Seek Temporary Relief

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. PAVE provides an article with more information: Respite Offers a Break for Caregivers and Those They Support.

Parents and caregivers of children with developmental disabilities can seek in-home personal care services and request a waiver for respite care from the Developmental Disabilities Administration (DDA). PAVE provides two training videos about eligibility and assessments for DDA. For more information about the application process, Informing Families provides a detailed article and video.

Download the Emotional Wellness Tips for Caregivers

Emotional Wellness Tips for Family Caregivers

Download this checklist of Emotional Wellness Tips for Caregivers in:
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Respite Offers a Break for Caregivers and Those They Support

Posted on by Nicol Walsh

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:

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.
  • 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.
  • Lifespan Respite Washington, a program of PAVE, offers vouchers to help fund respite care.
  • 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.

Introduction

“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.

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 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.

Ways to pay for respite and find respite providers

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 vouchers can help fund respite services

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

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 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.

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 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.

Veterans and Military Family Caregivers

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.

Keeping Kids Busy Through Summer: Summer Camp Alternatives

Posted on by Nicol Walsh

Summer camp is an excellent way for children to spend the long summer days. However, camps are often filled quickly, and many are out of the financial reach of families. Here are some alternatives to those summer camps to entertain children and give caregivers some much needed respite.

A Brief Overview

  • There are many inexpensive ways to entertain children over the summer
  • Check with local parks and recreation for activities, including those for children and youth with disabilities
  • Washington State Parks are wonderful for exploring as a family
  • Consult with family organizations, schools, and educators for ideas and information on programs

Full Article

Local parks and recreation departments often boost their options for children over the summer. These can include sports, preschool classes, and outdoor activities. Some of the parks and rec departments, especially in larger communities, have adaptive or accessible classes, for those with disabilities and/or sensory issues. Boys and Girls Clubs have activities, classes, and day camp for a small fee. Their Find a Club interactive map will let you locate the nearest club. The YMCA also can offer day camp options, along with their usual sports and recreation options. 4H, the nation’s largest youth development organization, has many opportunities for children and youth to engage in hands-on learning, skill building, and community interaction. Various branches of 4H offer Science, Technology, Engineering & Math (STEM) activities, civic engagement, animal science, environmental science, performance arts, nutrition and health, and many, many more activities are available through your local camps.

Washington State Parks provide for a wide range of outdoor activities this summer and even have special events that can be viewed on their calendar. For children four and up, their Junior Ranger Program has activities to print out and ideas for indoor and outdoor fun. For those with physical limitations, an interactive ADA map of park facilities shows the wheelchair accessible options throughout the State Park system.

Libraries often have surprisingly varied options, including reading programs, arts and crafts, educational classes, and movie nights. Many libraries now have take-home kits for creative activities to do with the whole family. Summer reading lists are available both on library websites and in-person.

Movie theaters sometimes offer sensory-friendly film viewing at certain scheduled times, check with the theater. Good for those hot afternoons!

Parent groups and family organizations are often up to date on the latest summer activity offerings around the community. The Arc of Washington and Parent to Parent are both focused on families with children with disabilities or special health care needs, are aware of many opportunities, and may even offer some events for families and kids.

Some school districts have enrichment activities over the summer beyond the extended school year (a.k.a. summer school) options. Local school district websites will have full listings for anything they may offer. Often schools and school districts also have recommendations for summer activities and information on summer events. Teachers are a useful resource for summer ideas and information, as they have heard a lot about what their students are doing this summer, so a quick chat with them may be in order.

Several websites focus on community events and classes that children and youth can be involved in over the summer. The most prominent is Macaroni KID, but others include Parent Map, and Family Day Out. The local Chamber of Commerce and local newspapers also will post some event highlights and may list on their community calendars. Summer is also the time for County Fairs and other events, many of which take place in August.

Lifespan Respite WA (a program of PAVE) has a list of registered providers that is accessible to everyone, where it is possible to find recreation and respite options by county, age served, disabilities served, and respite type. The options listed under Recreation on the “Respite Type” menu has an array of interesting options that may have flown under a family’s radar, such as equine therapy, music classes, and sensory-friendly playgrounds. Check out their page “Creative Options for a Respite Break” for more low-cost and free ideas for summer (and year-round) activities. Visit their Voucher Program page to find out if you qualify for a small grant for short respite breaks!