Tag: Lifespan respite

Do You Have an Emergency Respite Plan?

Posted on by Barb Koumjian

Who will care for your family member if you are temporarily incapacitated? Don’t wait for an emergency situation to occur to think about who will take care of your loved ones.  Finding someone to take care of your children, grandchildren, or elderly relatives on short notice takes time and information, so plan ahead.

In this article:

  • 4-step process to set up a backup plan for “emergency respite” when you will need other people to provide care to your loved one when you suddenly can’t
  • Examples of forms and documents you can use to make plan set-up easier
  • Where you may find paid respite providers
  • Where you may connect with potential unpaid respite providers in similar circumstances
  • Potential financial resources to pay for emergency respite care

4 Steps to create an emergency respite plan and put it into action

Step 1) Get it down on paper:

  • List the people you care for; with the hours you care for them and what care you provide (for example, monitoring medication, bathing, shopping, etc.). Note where the care is provided (they live with you, they live in their own home, etc.)
  • List the people you know that are capable and willing to care for the individuals for whom you care. If the list is short, create a list of those who you think may be able to provide care.
  • Recognize that if you have several people for whom you care that you may not be able to use the same caregiver for all of them. Also recognize that if you ask someone to be an emergency caregiver, that that person might expect that the agreement is reciprocal – they may expect that the people that they care for will be taken care of by you, should it be needed.
  • Be aware that if you hope to use a facility, such as a nursing home, it will be extremely difficult to find space in a facility at short notice. Such organizations can’t guarantee if or when a bed will be available even with advance notice.

Forms and resources to help you make these lists:

  • You can certainly just use your own outline of your loved one’s care needs and routines, and medical information, but below are several free documents designed for children’s care.
  • For others, there are numerous printables or notebooks available via an internet search, including many found on Etsy and Amazon and even local drugstores!
  • Try a search for “hardcopy medical information form”, “hardcopy medical information planner”, “caregiver daily record”, “senior care checklist”.
  • Portable Medical Summary is for vital information to carry around with you at all times.
  • Getting to Know Me is a short form that children can carry with them that is also available in Spanish.
  • What’s the Plan? Includes In Case of Emergency, and Getting to Know Me

Step 2) Have an open and honest discussion with the people on your list:

  • Are they willing to provide emergency respite if needed? 
  • Are there time limitations on what they can provide?
  • Are there questions they need answered before they commit? 
  • Who will be the primary caregiver, who will be the backup caregivers, and who will be the main contact person and coordinator?
  • You can reassure potential temporary caregivers that you’ll have complete information about the person’s care needs, medications and how to give them, medical contacts, and how you can be contacted while you are not able to do caregiving
  • If there are few or no people who you can depend on for emergency respite, start researching to find if there are paid caregivers you can use, or possible unpaid caregivers with whom you don’t yet have a strong relationship. Note that paid caregivers will need some lead time to schedule services, so they are not for a last-minute call.
  • It’s a good idea to have at least some strong possibilities for emergency respite care before you follow Step 3, discussing the plan with the person you care for

Step 3) Have a discussion with the person you care for about the emergency respite plan and the emergency caregivers

  • It’s crucial that their opinions are part of your plan process, and they are comfortable with the plan so that any switch in caregiving goes as smoothly as possible.
  • If you care for people who take time or repetition to process and accept change, it’s important to begin the process of why, when, who, and what so the transition to a new person or people is easier.
  • When possible, the people you care for may add their request to a potential emergency caregiver to yours. They may also suggest potential caregivers you haven’t thought of!
  • Realize that you may have to revisit Step 3 as you try to firm up your plan, or when the plan needs changes.

Step 4) Get the complete plan on paper and share it with your emergency caregivers and the people they will care for.

  • Take the document you began in Step 1 with information about your loved one’s needs, healthcare, likes and dislikes, and routines.
  • Add contact information for your emergency caregivers, with brief information on who will be the primary caregiver, who will be the backup caregivers, and who will be the main contact person and coordinator.
  • Carry a copy of this information with you and give it to your emergency contact, along with the people who you are likely to tap as emergency respite caregivers.
  • Important: Post a copy of the plan in your home, in a prominent place where first responders will find it (refrigerator in kitchen, next to a landline phone are both good places).
  • If you care for people who live in their own homes, ask them if you can post it there as well, with their permission. Explain that it’s important for everyone to know who will be taking over if you need to pause in your caregiving.

Medical and other social workers and those intimately acquainted with the needs of your family can be helpful in the process if you get stuck.

Possible unpaid caregivers: Reach out for connections and relationships that may help you in an emergency.

  • Often parents who have children with similar diagnoses can come to an understanding where they will take care of each other’s children in an emergency situation. One good place to find these connections is through the Parent to Parent (P2P) programs across WA State. Find contact listings in the P2P program pages at The Arc Washington State.
  • If you care for a child or young adult with complex medical needs or a specific condition, you can find support groups and contact information on the website of Washington’s Family to Family Health Information Center.  You can also use the Get Help link on that site, or at PAVE, to ask about support or “affinity groups” (affinity groups are for family caregivers/parents whose loved ones have similar conditions or other things in common).
  • If the person you care for has a specific medical condition, such as dementia, Parkinson’s Disease, or Traumatic Brain Injury, try an internet search for local chapters of organizations which support people with those conditions.
  • Do you have a faith community (mosque, church, synagogue, temple, etc.) that might be able to put together some volunteer care?
  • Are you caring for the child or children of another family member or friend? Whether or not you have official guardianship, you can reach out to the Kinship Navigators in your county or area of Washington State. These professionals can offer support and referrals to caregiving organizations and individual providers, and potential ways to afford care.

Regional and County-level programs may help to locate paid caregivers and possible financial assistance to pay them:

  • For any county: type the name of the county and then .gov (example: Snohomish County.gov) to get your county’s official website.

General information on where to get respite (planned breaks from caregiving) across WA State: Respite Offers a Break for Caregivers and Those They Support -information on different sources of respite care in WA State, many of which cover some or all of the cost of care.

To find paid caregivers, you can:

  • search for qualified paid caregivers through the Lifespan Respite provider database
  • If you are in King County, try Carina.org to search for an agency or individual provider
  • your local Area Agency on Ageing serves caregivers of seniors and people of ANY age with disabilities). Search by your county to find contact information for local services.
Area Agencies on Aging phone numbersDownload

State agencies to help you find paid caregivers and funding for paid care: With hundreds of different caregiving companies and nonprofits around the state, it is not possible to list them all. There are several agencies that have full listings of caregiving providers. Statewide, you can contact Community Living Connections at 855-567-0252, and Eldercare Locator at 800-677-1116

How to Afford Family Caregiving, Part 2: Job Flexibility

Posted on by Barb Koumjian

Being a family caregiver can be financially stressful. In addition to taking on the costs of caring for a close friend or family member, caregiving makes it difficult to work at a full time job. Caregivers may struggle to stay employed and be financially stable. This resource discusses job flexibility and possible options for getting paid for what you do as a family caregiver.
Job Flexibility:

Family caregivers can discuss several options with their employer that can make it easier to keep employment: flexible hours, remote work, job-sharing, or per diem work (by-the-day or on-call work). Not all employers will be open to these options, and family caregivers need to know that job-sharing and per diem work can cut down on the number of hours they will work and result in lower income. Important benefits like health insurance may not be available with job-shares and per-diem.

When looking for work, family caregivers can put an emphasis on finding an employer that will honor their work as a caregiver by allowing the options above. One course of action is looking for work for a non-profit, where employees and management know first-hand how vital unpaid caregivers can be for the safety and stability of those who need care.

The Nonprofit Association of Washington has a non-profit job page that can help.

Idealist.org, a 502(c)3 nonprofit, is a site dedicated to listing nonprofit and volunteer employment. Job listings can be filtered by location preferences, on-site or remote and hybrid work (part time on-site, part-time remote). Jobs may be full time or part time. Salary ranges are listed and organization information is included.

Flexjobs lists flexible jobs at both for-profits and nonprofits. It requires a paid subscription and states that it screens for scams.

An alternative to traditional workplaces that many caregivers have embraced is gig and freelance work. Gig work can be done with a single company or service or with several companies as freelance work. Well-known gig work employers include companies such as Uber, Instacart, DoorDash, and Rover. These positions let caregivers decide their own hours. A smartphone and a car are required.

Freelance work is a bit different, with the companies and/or individuals that you work for changing regularly. Several websites cater to freelancers, such as fiverr, taskrabbit, and upwork. Flexjobs, noted above, also has freelance job offerings on its site.

For Care Partners/Caregivers of Individuals Living with Parkinson’s Disease

Posted on by Barb Koumjian

At Lifespan Respite WA, we focus on caregivers. Our team gathered resources specifically for caregivers from the organizations listed below, to support you in your life with your care partner.

American Academy of Neurology’s Brain&Life website has a quick search function for all types of neurological diseases including Parkinson’s, as well as clinical guidelines (best practices) and information on clinical trials and clinical research.

Davis Phinney Foundation for Parkinson’s

1-866-358-0285; contact@dpf.org

“Dedicated to helping people with Parkinson’s disease live well today. Provides information, inspiration, tools, resources, and opportunities to people living with Parkinson’s Disease and care partners to better manage their disease and promote increased engagement in health.”

Among a list of more traditional resources, the Davis Phinney Foundation focuses in on person-to-person support for those living with Parkinson’s and their care partners:

  • Parkinson’s Ambassadors: located in 35 states and Canada (one on one support)
  • “We have more than 70 Ambassadors located in 35 states and Canada. Ambassadors are available to connect with individuals, families, and groups to help answer questions about living well with Parkinson’s and connect you with resources and relationships to provide support.”
  • Living with Parkinson’s and Care Partner Meetups on Zoom (comes with how-tos for Zoom and access to recordings)
  • “Our monthly Living with Parkinson’s Meetup brings together all people diagnosed with Parkinson’s—young, old, early, late—for open, honest, real, and always fun conversations about everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.”

La Davis Phinney Fundación en Español

Usted puede Vivir Bien Hoy si ha sido diagnosticado con Parkinson y nuestra misión es acompañarlo y apoyarlo durante este camino.

A continuación, encontrará una serie de enlaces a distintos espacios y formularios mediante los cuales queremos establecer un puente de comunicación e información con nuestra comunidad de Parkinson de habla hispana.

Y no olvide que siempre puede contactarnos enviando un correo electrónico a la siguiente dirección: cmartinez@dpf.org.

Sitio Web : En español

Lifespan Respite WA’s website can link care partners to the Washington Family Caregiver Learning Portal (from TRUALTA), which has free training for the type of care individuals with Parkinson’s may need at home. Once in the Portal, type “Parkinsons” in the search bar.

The Michael J. Fox Foundation for Parkinson’s Research

This research-focused organization does have good advice for caregivers, found under the topic “Care Partners”.   The “Support Group” page has some specifics for starting a support group. If you don’t find one that works for you, there is this list:

Parkinson’s Buddy Network is an online community of people impacted by Parkinson’s designed to help you make meaningful connections, engage in important dialogue, find useful resources and build long-lasting relationships.

NeuroTalk has a robust Parkinson’s disease community.

Caring.com hosts a Parkinson’s support group.

HealthUnlocked has Parkinson’s community pages.

Smart Patients Parkinson’s Disease Community offers self-care tips.

PatientsLikeMe has a Parkinson’s forum.

    MyParkinsonsTeam. The website says “MyParkinsonsTeam is a free social network that makes it easy for you to:

    • get the emotional support you need from others like you, and
    • gain practical advice and insights on managing treatment or therapies for Parkinson’s disease”

    Note that this site is run by a for-profit organization, so you may wish to carefully read the “About” section.

    Northwest Parkinson’s Foundation

    Toll-Free: 1-877-980-7500
    Seattle area: 206-748-9481
    Email: info@nwpf.org Website: https://nwpf.org

    “Our Mission is to transform the way people live with Parkinson’s through awareness, education, advocacy, and care.”  They serve in Washington, Alaska, Montana, and Idaho.

    Social Services: “Northwest Parkinson’s aims to fill in the gaps between neurology visits by providing support for People with Parkinson’s, Caregivers, Family members, and Providers in Washington, Alaska, Montana, and Idaho. Social Work is available to provide PD related education and resources or simply lend a listening ear. We offer:

    • 1 to 1 phone consultations to navigate life with Parkinson’s and caring for someone with Parkinson’s. During these consultations we can go over a range of resources from Support Groups, in-home care, placement advisory referrals, Neurology/MDS referrals, financial assistance resources, online and local movement/fitness programs, among others.
    • Support Groups. NWPF runs a few different support groups for Carepartners, Adult Children, and Lay Facilitators of PD Support Groups. We also keep a listing of Support Groups in each of the 4 states we service.”
    • Many other supports and services

    Parkinson’s Foundation   Parkinson’s Foundation en Espanol

    “Parkinson’s Foundation focuses on research and access to healthcare for individuals living with Parkinson’s Disease. The Pacific Northwest Chapter serves residents of Alaska, Idaho, Montana, Oregon and Washington with local resources”

    Support for Care Partners includes among other resources

    For programs, support groups and specialist referrals, call the Parkinson Foundation’s Helpline at 1-800-473-4636, or by email: Helpline@Parkinson.org.

    Stanford Medicine has the Caregiver Corner with fact sheets, blog, articles, videos, and podcasts.

    Lifespan Respite WA for Professionals: Social Services and Medical

    Posted on by Barb Koumjian

    What Lifespan Respite WA does:

    We offer interpretation if arranged in advance for almost any language. Email us in a preferred language to set this up.

    Contact us:     Email: getrespite@wapave.org; Phone:  253-442-3214

    Essential Information

    • Caregivers must not be receiving respite care funded through any other program or organization, whether government-funded or private sector. Family helping out by paying for respite care doesn’t count as “paid respite”. (On the other hand, families who are approved for publicly funded programs, but who won’t get services for at least 30 days or on a no-paid-services list are eligible for a Lifespan voucher).
    • We do not ask for any proof of condition or diagnosis, any proof of income, or any documentation. Everything is self-reported.
    • We are required to get a statement (emailed, texted) from a caregiver if the care recipient is on Medicaid, that no paid respite is being received from any program or agency. Financial help from family members is ok.
    • This program is for PLANNED, not crisis or emergency respite. No exceptions.
    • Short-term!! Must use within 4 months, unless for summer camps or recreation. In that case, proof of registration is required.
    • Extensions may be approved under compelling circumstances, on a case-by-case basis.
    • Usual award amount is $1,000.00 per household.
    • ONE voucher per household—if there are multiple care recipients, voucher is evenly split and can’t be transferred from one family member to another.
    • There is a wait list since there are always more applications than funds. We cannot tell exactly when an award will be made. According to our contract with the state, vouchers are given based on the date of application, but also on an equitable distribution of vouchers across WA State, taking into account the population density and numbers of applications from different regions.
    • Applicants get an email notice when we get their application. We will be sending interim notices to let applicants know their application is still on the list
    • Caregivers can reapply in one year from the date of their most recent application.
    • Caregivers have the responsibility to find out the hourly or session rate charged by the program or agency, and to keep track of hours or sessions so as not to run over the voucher amount. Caregivers are financially responsible for any charges over the amount of the voucher.

    Important for family caregivers to know

    • The biggest barrier to voucher use, for many caregivers, appears to be contacting programs or agencies and persisting until they get a response back. This is why we recommend checking providers out even before a voucher is awarded. Check our “List of Providers” page to find out if the type of respite they have in mind is available in their area.
    • There is no guarantee that any program or agency has availability even when on our Providers list.
    • We have providers of some type in each county in WA; but some counties do not have much provider choice. We are constantly working on that!
    • Voucher applicants may suggest a provider if there is no availability among the registered providers, or if they have requirements registered providers cannot meet. The team will reach out and see if the suggested provider is willing to take the voucher funding.
    • We can’t pay a family member OR ANY OTHER INDIVIDUAL to be a caregiver. The only respite we will pay for is from one of our Registered providers.

    Respite Offers a Break for Caregivers and Those They Support

    Posted on by Nicol Walsh

    Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services. Resources and links include sources of respite in WA State.

    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. Resources and links include sources of respite in WA State.
    • 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 follows appropriate safety measures.

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

    • How are the workers chosen 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 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 the insurance company makes sure the standards are followed.

    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) has an online tool to help caregivers figure out what type of help they may want or need.

    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 ideas to start 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 find a respite provider is to connect to a website managed by SEIU 775:  The Service Employees International Union is for 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 worker’s 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.

    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:
    English | Chinese (Simplified) 中文 (Zhōngwén) | Korean 한국어 (Hangugeo) | Russian Русский (Russkiy) | Spanish Español | Tagalog | Vietnamese Tiếng Việt

    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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    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!