Tag: self-care

Holiday Survival Tips For Families with Special Healthcare Needs

Posted on by Nicol Walsh

A Brief Overview 

Every family experiences holidays and end-of-year transitions differently. This article provides a sampling of ideas for families with children (of any age) experiencing special healthcare needs or disability. If a child also experiences behavioral difficulties, you may wish to read Home for the Holidays: The Gift of Positive Behavior Support 

Here are some quick takeaways: 

  • Keep to your everyday schedule and routine as much as possible to minimize medical and behavioral impacts. 
  • Add fun with home-based holiday activities and traditions tailored to your family’s needs or select family or group activities which work with your child’s medical needs. 
  • Plan and save surprises too: Mix up the activities so children can help with some planning and enjoy a few surprises. 
  • Plan for health and safety if travel is on the schedule. 
  • The article includes suggestions for parents and other family caregivers to help support you as a family caregiver during the busy holiday season. Includes ideas for parents in the “sandwich generation”.
  • Gratitude is a gift: Moments of thankfulness calm the mind. For additional stress-reducers, PAVE has a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series. 

Full Article:

Get Holiday Help

Parents and family members who care for an individual with special health care needs or a disability are already busier than most people. It’s very common for a primary caregiver, the person usually caring for a person with health needs or disability, to believe that all the extra planning for holiday time is their responsibility, too.

This season, use these reminders and tips to help yourself as a parent or other family caregiver to some holiday spirit:

Share your holiday wish list with extended family and friends. Here are some ideas:

  • Ask for time off from caregiving duties as a gift for the holidays (respite).  Can another family member, extended family member, or friend take over some caregiving tasks? Perhaps they could pay, or help you pay for a home care worker or a stay at a respite facility.
  • Can a family member or friend help with chores, household maintenance, holiday cleaning, shopping, decorating? Look at your household’s to-do list and just ask.
  • Childcare when school’s out: “You know, for Channukah this year, I’d love it if you could come over and play with the younger kids while I do XYZ”.
  • Gift certificates for relaxing /pampering activities are great too: spa time, for example!

Order in holiday-time meals or ask for the pre-holiday gift of donations of baked goods, meals you can freeze/reheat, or gift cards to food delivery services from restaurants or supermarkets.

Money: Make a holiday spending budget with your spouse or partner to reduce financial stress. Ask extended family members to agree on a dollar limit for gifts and/or set up a gift exchange where names are drawn.

Are you a “sandwich generation” caregiver, caring for both children and older family members with health or other conditions?  Carol Bradley Bursack, writing on Aging Care, shares this insight:

“The squeeze of generations and the countless needs of each leave little time for caregivers to think of their own needs. Members of the sandwich generation know this dilemma well. Prioritizing our own health and enjoyment winds up feeling like just another task, so we knock it to the bottom of the to-do list and keep on doing for everyone else…

Communicate with your loved ones. Even small children can understand—if they are told in a loving way—that your time is short or you have to cut corners because Grandma and other family members rely on you, too. Communicate the same thing to the elder(s) in your care. Helping the entire family understand that each person’s desires are important to you but that you have a lot on your plate can help keep their expectations more realistic. You’d be surprised how much a senior, even one who has dementia, can understand.”

Learn more about the difficult choices facing “sandwich generation” family caregivers in another article by Carol Bradley Bursack, A Story from the Sandwich Generation: Caring for Kids and Parents1

Decide Which Routines and Schedules Might Be “Holiday Flexible” 

“Many children with disabilities rely on schedules, either as a coping strategy or for medical reasons. It is critical to keep your child on schedule during the holidays as much as possible. This may mean leaving an event early or arriving later to accommodate tube feedings or respiratory treatments. It may mean putting your child to bed on time, even at Aunt Sally’s midnight party.” -Susan Agrawal, complexchild.org .  A “reason” for leaving an event might make it easier for a child to leave an event when others are staying. “It’s time for us to get the food ready for Santa’s reindeer” or “let’s head home for a special holiday treat” may help get everyone out the door!

If your family can accommodate a bit more flexibility, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun holiday flavor. For others, sleeping in or staying in jammies longer than usual might create a relaxing holiday feel. Be sure to call out these relaxed rules as holiday specials so everyone understands they are temporary changes and part of the “break.” 

Keeping to a schedule and getting regular physical exercise and good sleep is important for everyone else in the family, too!

Set Expectations with Extended Family

No holiday is ever perfect, and unrealistic expectations can cause a celebration to sour. Communicating with relatives and friends can help: 

  • Make a “Gift Wish List” for your child with special healthcare needs to let relatives and friends know what gifts will be good for your child based on what they might need to avoid and what they can use and enjoy. Many large retailers (Target and Kohls, for example) carry lines of adaptive clothing and sensory products and toys. 
  • Ask for understanding and support from family and friends to reinforce positive messages and realistic expectations. Saying no might be important, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation. Or use the “No, but” strategy and offer an alternative such as a different time or activity, or a virtual get-together.

Travel 

For families choosing to travel, bags with medication and equipment still need to include masks, hand sanitizer, and sanitizing wipes. Even with mask mandates mostly a thing of the past, it’s sensible to have these on hand for crowded airports and planes and visiting more vulnerable, elderly relatives.  

If plans include planes and trains, be sure to let agents and attendants know about a family member’s special accommodation needs.  

  • Washington travelers can make preflight preparations from Sea-Tac Airport by sending an email to the Sea-Tac Airport customer service.  
  • The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services. 
  • TSA Cares is designed to aid travelers with disabilities with TSA screening procedures. Call them at 855-787-2227 (8 AM to 11 PM Eastern Time M-F, and 9 AM-8 PM Eastern weekends and holidays). 

Sugary treats might impact planning for children with diabetes: An insulin pump might help during the temporary splurges so a child can enjoy the holiday without feeling too different or overwhelmed. 

  • Visions of sugar plums might need a different flavor for children with specific allergies or food sensitivities. Being prepared with substitutions may prevent a child from feeling left out. If someone else is doing the cooking, be sure to share about any severe allergies to make sure utensils and mixing containers do not get cross-contaminated. 

Add Fun 

ASK your family-what do they like best about a holiday? (Christmas, Channukah, Kwanzaa, Diwali, Eid al-Fitr, etc.) Keep these wishes in mind when you select and plan for holiday activities. This may help you to keep your to-do list focused on what your family looks forward to, or would like to change, rather than an overwhelming set of holiday “to-dos”.

Give the gift of Giving. Every person deserves the chance to be of help to others and make them feel loved. Small children, children with special health conditions, children of any age with intellectual disabilities, children with developmental disabilities can participate in the act of giving holiday gifts. It’s a great way to boost a person’s capabilities and sense of belonging.

Making home-made holiday cards, simple handcrafted items, baked goods, or purchased inexpensive items from a dollar store can be great holiday family activities or a chance to spend one-to-one time with an individual child.

Families can set aside time for, or add on to ordinary routines, time for reading special holiday stories, playing games, or watching silly holiday movies. Laughter is therapeutic!

Understanding your child’s healthcare needs and vulnerabilities can help with deciding which activities are right for your family. It’s also important to think about which activities will help you, the caregiving parent or family member, recharge—and which ones to prioritize in terms of time and energy.

  • Drive-through light shows, streaming concerts, theater, and holiday events are options in some areas that won’t expose a medically vulnerable child to other people’s germs. 
  • If weather and your family’s needs permit, outdoor holiday activities with groups of people are less likely to spread illness, as we all learned during the height of the COVID-19 pandemic. Think of tree lightings, caroling, snow-sculpture or snowman-making events, and of course winter sports, if appropriate, for your child and family. 
  • One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s travel on Christmas Eve and has kid-centered games and songs. 

Finding the “just-right” amount of holiday celebrating can be tricky, so keep the Three Bears/Goldilocks principle in mind. For children who understand this theme, families can use the classic story to talk about how everyone makes choices about what is the “just right” amount of celebrating, eating, screen time, sleeping. 

Plan and Save Surprises Too 

A theme for the year can add a new flavor to family traditions. Here are some suggested themes: 

  • How I celebrated when I was a kid. 
  • Christmas 1821, 1721, etc. 
  • Holiday food, decorations, stories, music, etc. from another culture. 

The family can research the theme together to come up with ideas and activities. A theme night might include a chance for each family member to share something or lead an activity. On story night, each person might share a favorite holiday memory or a made-up story. If extended family want to take part, a video conference might be an added element to the evening. 

Adults can set aside a few ideas to save for in-the-moment surprises to sprinkle in. A prize, special treat, well-told joke, customized family game, or a surprise “guest” on the phone are a few ideas to plan out in advance. 

Gratitude is a Gift 

Gratitude helps the mind escape from stress-thinking and move toward feelings of peacefulness and grace. Taking a few moments to mindfully reflect on something that brings joy, beauty, love, sweetness—anything that feels positive—can create a sense of ease.

For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series. 

Susan Agrawal, writing on complexchild.org, reminds us “No holiday is ever going to turn out like you want it to, even if you have the most perfect storybook family in existence. Don’t expect perfection or anything even close to perfection. For some families, getting through the holidays may be as much as you can expect. For other families, changing holiday traditions may make the season not feel the same. That’s OK. Instead, try to find the blessings in the season, whether that means seeing family members or celebrating your child’s inch stones.”  

Additional Holiday Resources 

PAVE:

Aging Care:

Complex Child:

Summer Daily Activity List – Taking care of YOU!

Posted on by Nicol Walsh

PAVE has created a suggested list of activities to follow every day this summer. Give yourself grace if you cannot do everything on the list. Nobody is keeping track. Your reward will be a healthy mindset! Type Mindfulness into the search bar on our website to find other articles and videos to support self-care for everyone in the family. 

List of Daily Activities for the Summer Print list on wapave.org

Click to view this list in PDF form

Start the day with a self-care routine – Do all!

  • Eat breakfast
  • Get dressed and take a shower if needed
  • Brush teeth and hair
  • Pick up your room and make your bed
  • Put away four things that are out of place

Take care of your home – Pick one!

  • Help to wash dishes
  • Load /unload the dishwasher
  • Vacuum one room
  • Empty the garbage
  • Do a new chore!

Build your body – Pick one or more!

  • Challenge yourself to do something outside for at least one hour
  • Go for a walk, walk a pet, or draw with sidewalk chalk
  • Help make a yummy healthy meal
  • Play with friends or swing at a nearby park
  • Tired or crabby? Take a nap!

Build your brain

Build your brain – Pick one or more!

  • Do a puzzle, play with Lego bricks, make music
  • Write a story, read a book (at least 1 chapter or 20 minutes)
  • Choose something else creative that you enjoy

Build up others – Pick one or more!

  • Write a letter to a friend or family member
  • Give a compliment
  • Find a small or large way to help someone: a little kindness goes a long way!

Self-Care is Critical for Caregivers with Unique Challenges

Posted on by Nicol Walsh
  • 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.
  • For a quick takeaway, here is a short video to inspire self-care today: Self Care for Caregivers.
  • PAVE provides a library with more strategies to cultivate resilience, create calm through organization, improve sleep, and more: Self-Care Videos for Families Series.

Full Article

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. This article is for you!

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

  • Notice your two feet on the ground. Feel the ground and feel your feet under you, with the weight of your body dropping into the ground through your feet. If you don’t stand on two feet, then notice whatever part of your body is connecting you to furniture or the floor.
  • Notice that you are breathing in and imagine that breath starts in your feet (or seated body) and travels all the way to the top of your head.
  • Notice that you are breathing out and imagine that your outbreath goes all the way down and out through your feet (or seated body).

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.

Keep in mind: 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!

These practices matter a lot, especially because almost everyone knows or cares for someone with special needs. According to the Centers for Disease Control (CDC), at least 26 percent of the population experiences a disability. The result is widespread compassion fatigue, which is a way to talk about burnout from giving more than you get.

Anyone who isn’t convinced that self-care matters may want to watch a film by National Geographic, Stress, Portrait of a Killer, which includes research data to show how caring for a child with special needs can impact parents (minute 38 includes that report).

Below are some ways to pull on your own oxygen mask first!

Connect with others

Meet up regularly with people who have similar life stressors. The Parent-to-Parent network can help by matching parents with similar interests or by providing regular events and group meetings.

Caregivers of youth who are Deaf or Hard of Hearing (DHH) can connect with other family caregivers at Washington Hands and Voices. 

For caregivers of young people with behavioral health conditions, there are several family-serving agencies that might provide help and solidarity. Some agencies are listed at the end of this article and in PAVE’s Behavioral Health Toolkit.

Here are additional places to find one another:

  • School
  • Sports teams
  • Community center
  • Special Needs Parent Teacher Association
  • Extracurricular events
  • Online support groups

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 the 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.

Here is information from the Mayo Clinic 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 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.
  • It improves your mood. Regular exercise can increase self-confidence, improve your mood, help you relax, and lower symptoms of mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

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. Here are a few ways to practice that don’t involve a yoga mat or a meditation cushion:

  • Color
  • Work on/wash the car
  • Build something
  • Make art or do a craft project
  • Put together a puzzle
  • Laugh
  • Clean
  • More ideas: Mindful.org

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, 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!

One of PAVE’s self-care videos for families is this one: Get Calm by Getting Organized.

Here’s more guidance: calendar.com: Why Stress Management and Time Management go Hand in Hand.

Seek Help

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 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). Here are resources to help with that process:

For parents whose children and youth experience conditions related to behavioral health, PAVE provides a toolkit with resources for navigating crisis systems, medical care, school, and family support networks. Here are some family serving agencies:

Parents of youth who are blind or low vision may seek support from the Washington State Department of Services for the Blind (DSB). Learn from youth at PAVE: My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind.

Parents of youth who are Deaf or Hard of Hearing (DHH) can connect with the  Office of the Deaf and Hard of Hearing | DSHS or connect with other family caregivers at Washington Hands and Voices.

Self-Care Videos for Mindfulness – Families Series

Posted on by Nicol Walsh
How to Cultivate Resilience Like a Starfish
Take a Mindful Walk in Nature
Get Calm by Getting Organized
Feel What You Feel
Support a Child’s Resilience by Pointing to the Positive
Body Sensing Meditation for Help with Sleep
Make Good Feelings Stick Like Velcro

Take a Mindful Walk in Nature

Posted on by Nicol Walsh

Mindfulness can mean anything that helps you slow down and show up for what’s happening in a moment. This video demonstrates how to notice all of the body’s senses on a nature walk. Once it’s familiar, the concept could be useful in any environment, including indoors. Get creative and if it’s developmentally appropriate, you can encourage children to make up their own journey through their senses.

Get Calm by Getting Organized

Posted on by Nicol Walsh

When overwhelm is happening, it’s hard to imagine that getting organized will help. But here’s why it’s worth it: When you feel satisfied that you’ve done something, your brain releases happiness chemicals and hormones. This video provides information about how that works and how families can tap into happy by getting organized and taking time each day to celebrate everyone’s accomplishments.

How to Cultivate Resilience like a Starfish

Posted on by Nicol Walsh

Starfish are masters at letting turmoil wash around them. They are also excellent models of resilience. This short video uses imagery from the sea and provides a strategy to get grounded, steady the breath, and cultivate four key aspects of resilience: purpose, connection, adaptability, and hope.

Become present and let thinking float away as you treat yourself to this opportunity to take a few minutes to care for yourself.

Breathe Mindfully and Give Your Favorite Stuffy a Ride

Posted on by Nicol Walsh

Even young children can become grounded and calm if breathing with intention is fun and accessible to them. This short video features two young models showing how they give their stuffed animals a ride while they breathe into and out of their tummies.

Have your child choose a comfortable place to lie down and place their stuffed animal on their tummy. Help them to notice what it’s like to breathe and watch the stuffy go up and down. Ask them what it feels like to notice their breathing and their stuffy taking a ride.

Our five-year-old model says, “I loved it and felt like I could fall asleep.”

Body Sensing Meditation for Help with Sleep

Posted on by Nicol Walsh

Anxiety around bedtime is a struggle for many people of all ages. Whether the challenge is to fall asleep or stay asleep, worry doesn’t make getting enough zees any easier. Here is a strategy for calming that uses a body scanning strategy combined with breath awareness.

Parents might share this practice out loud to help a child go to sleep. The child also might learn to use all or parts of the technique on their own. Once you understand the basic strategy you can adapt the wording to meet your own needs or the needs of the person you are sharing this with. Some might even fall asleep before you get through the whole practice!

If you or another person experiencing this practice do not have all of their body parts you can ask whether it feels good to imagine those body parts while doing the body scan or whether it feels better to include only body parts that are present. For a person who is deaf or hard of hearing or for people who respond well to sensory touch, there is the option to gently touch parts of the body while moving through the practice. Once learned, the practice can be silent, internal, and personalized. Be creative about how to make it workable and useful for any person who might benefit.

To help with sleep, body sensing starts with the feet…

Please make yourself comfortable in bed or another space where you can relax and listen to the 10-minute meditation provided in this video.

When you are finished listening, if you are not yet ready for sleep, you may wish to begin again with the body sensing, always starting with your feet and traveling awareness up through the body, noticing the breath throughout your own journey into rest.

The Meditation Script

If you prefer to read this script aloud to someone else or to yourself, here are the words from the video:

Notice that you have two feet. On your feet there are toes, big toes, second toes, middle toes, fourth toes, and baby toes. Notice your feet and toes. Notice what your feet and toes are touching. Is it soft or hard? Cool or warm? Are your toes and feet relaxed? Notice that you have ankles. Your legs have a lower part. You have two knees. Your legs have an upper part. You have hips. Notice what your hips, legs and feet are resting on. Is there anything you could change to be even just a little bit more comfortable?

Notice your tummy. Notice that as you breathe in your tummy goes up. As you breathe out your tummy goes down. Notice what it feels like to breathe in and out of your tummy. As you breathe in, you are noticing that your tummy is filling up. As you breathe out, you are noticing that your tummy is getting empty. What does breathing feel like? Just notice.

Notice that behind your tummy is your back. You have a lower back, a middle back, and an upper back. Inside your back there are ribs, and your ribs have a back part, two sides, and a front part. Your front ribs meet at your chest.

Notice that when you breathe in, your tummy fills up and so does your chest. Your ribs get a little wider. When you breathe out your chest goes down and so does your tummy. Your ribs settle in. See if you can notice what it feels like when your tummy and chest fill up with breath and when they empty of breath. Notice how long it takes for a breath to come all the way in and to go all the way back out again. Your body knows how to breathe all by itself and does this all day long. Notice how it feels to pay attention to your body breathing.

Notice that your chest is in between your shoulders. Your shoulders are connected to your arms.  Your arms have an upper part. You have elbows. Your arms have a lower part, and you have two wrists. Notice your hands. You have fingers. Each hand has a thumb, first finger, second finger, third finger and a baby finger. Your hands have a back part and a palm. Notice what your shoulders, arms and hands are resting on. Is it soft or hard? Cool or warm? Are your arms, hands, and fingers relaxed? Is there anything you could change to be even just a tiny bit more comfortable?

Notice that your heart is beating inside your chest. You are breathing, and your heart is beating. Your body is taking care of its basic needs to be healthy and alive. Notice that right now you are safe. Notice the room you are in and whether there is lightness or darkness or some of both. Notice any sounds that are near or far. Notice that your body is breathing. Your chest and belly fill up each time you breathe in and empty each time you breathe out. Make any little changes that you need to be slightly more comfortable.

Notice that you have a neck and a head. Notice what the back of your head is resting on. Your head has a top part and two sides. You have eyebrows and two eyes. Your eyes can close so that your top eyelashes and your bottom eyelashes touch each other. Imagine that there is a color behind your closed eyes that is a soft dark blue. Notice how you feel when you peer into this deep blue space behind your eyes. Notice if there are any edges to the dark blue or if it seems to stretch forever, like the night sky.

Notice that you have a mouth. Inside your mouth there is a tongue, and you have teeth. Your mouth has a right side and a left side. Your mouth is resting.

Notice that you have a nose with two nostrils. Air comes into your nostrils and goes out through your nostrils. Notice that air traveling into your nostrils moves down into your chest and tummy. After the air empties from your tummy and chest it leaves through your nostrils. Notice the long journey that your breath takes through the body, from the nostrils to the chest and belly. Out from the belly, the chest, and the nostrils. What does it feel like to watch your body breathing?

Notice the shape of your whole body and what your body is resting on. You have feet and legs. You have a tummy and a back. Your arms and hands are resting. Your whole body is comfortable and resting. You are breathing with your nose, your chest and your belly. Your eyes are closed, and there’s a dark blue color behind your eyelids. We’re breathing in and breathing out through our noses. We are safe and resting. We are noticing what it feels like to rest.

Download the meditation script

Respite Offers a Break for Caregivers and Those They Support

Posted on by Nicol Walsh

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.
  • 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. The final section of this article includes additional military-specific resources. NOTE: There are upcoming changes to this program. See the information at the Hidden Heroes website.

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

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.

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.