Tag: parenting

Sunnyside- Bi-Lingual Conference: Families United For a Better Future

April 18 @ 8:00 am – 3:00 pm PDT

“The Families United for a Better Future Conference is a bilingual (English and Spanish) event created for families and others caring for children—including those with developmental and other disabilities. This engaging, community-centered conference brings together parents, caregivers, educators, and professionals to explore practical strategies, share experiences, and strengthen support systems for children and youth.”

“La Conferencia Familias Unidas por un Futuro Mejor es un evento bilingüe (inglés y español) creado para las familias y otras personas que cuidan a niños y niñas—including aquellos con discapacidades del desarrollo u otras discapacidades. Esta conferencia, atractiva y centrada en la comunidad, reúne a padres, cuidadores, educadores y profesionales para explorar estrategias prácticas, compartir experiencias y fortalecer los sistemas de apoyo para la infancia y la juventud.”

• Limited Interpretation/Interpretación limitada

Sunnyside High School
1801 E. Edison, Sunnyside, WA

Reserve Your Spot

For questions please call/Para preguntas por favor llame:

509-837-2225

Keynote Speaker:

John Kerr

Presenters /Presentadores

Join us for an inspiring session with John Kerr, a National Board Certified Teacher and Regional Teacher of the Year from Washington State. John has spent his career innovating bilingual science education and supporting English Language Learners. Discover his strategies for engaging students, fostering creativity, and harnessing the power of language in the classroom. Don’t miss this opportunity to learn from one of education’s most dynamic voices!

Acompáñanos en una sesión inspiradora con John Kerr, maestro certificado por la Junta Nacional y Maestro Regional del Año del estado de Washington. John ha dedicado su carrera a innovar la enseñanza de ciencias bilingües y a apoyar a los estudiantes que aprenden inglés. Descubre sus estrategias para motivar a los alumnos, fomentar la creatividad y aprovechar el poder del lenguaje en el aula. ¡No te pierdas esta oportunidad de aprender de una de las voces más dinámicas de la educación!

Session 1: 9:15-10:30

(Espanol) Esteban Cabrera, M.Ed.- Apoyo a Niños con Conductas Retadoras

-Cómo madres, padres y cuidadores pueden brindar apoyo y orientación a niños que enfrentan desafíos de comportamiento.

(English) Sam Blazina- Transitional IEP from Parents Perspective

-Guidance from one parent to another around planning for adult services!

(Espanol) Ybisela Tereones, PAVE– ¡IEPs, Planes 504 y Más!
-Aprende sobre los servicios de educación especial para tu hijo o hija, incluyendo los IEPs, los Planes 504 ¡y mucho más!

(English) Alma Sandez, DDCS-Developmental Disability Community Services

-Learn about services ans supports available to eligible indviduals with disabilities and their families.

(English/Interpertado Espanol) Sharon Grandy Louden, Autism Education Coordinator, ESD 105- Information and Education for parent of children with ASD.

-Supporting parenting making school a positive experenice for their child(ren) with Autism.

Session 2: 10:45-12:00

(English) Esteban Cabrera, M.Ed. Supporting Children with Challenging Behaviors

-How parents and caregivers can provide support and guidance to children who experience behavioral challenges.

(Espanol) Sam Blazina- La resolución de conflictos

-Navegando con éxito el desacuerdo y el conflicto dentro de la Educación Especial.

(Espanol) Hortencia Hernandez, Aula de recursos

–Cómo apoyar a tu estudiante en el aula de recursos

(Espanol) Alma Sandez, DDCS – Servicios Comunitarios para Personas con Discapacidad del Desarroll

–Conoce los servicios y apoyos disponibles para personas con discapacidad que cumplan con los requisitos y sus familias.

(Espanol) Philipe and Laura, ESD 105 Behavior Program

(English) Rosa Estrella, Department of Vocational Rehabilitation Services

-Transition and Employment Supports for People with Disabilities

Session 3: 1:15-2:30

(English/Interpertado Espanol)Christine Lindgren, Responding to Autism-All about Autism Spectrum Disorder

-What is Autism and how does it impact children and individuals?

-¿Qué es el autismo y cómo afecta a los niños y a otras personas?

(English)sherry Mashburn and Marie Kerr, PAVE– School Discipline
-Knowing your rights for students with an IEP or 504 Plan

(English) Horentica Hernandez, Resource Room Teacher-Resource Room

-How to support your student in the resource room.

(English) ESD 105 Behavior Program/Philipe and Laura

(Espanol) Rosa Estrella & Rosa Quiroz, DVR- Department of Vocational Rehabilitation (DVR) Services

-Apoyos para la Transición y el Empleo para Personas con Discapacidad

Reserve your spot

Free

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Online – P2P Military Families Support Group

January 22 @ 12:00 pm – 12:30 pm PST

REGISTER – Connect with military-connected parents in a welcoming space to share support through deployments, school transitions, IEP/504 plans, medical care, and daily challenges.

What We Do:

The support group provides information about available resources, services, and programs that cater to the needs of military-connected families raising children with disabilities, including educational supports, therapy options, medical services, and assistive technologies.

Inclusive and Welcoming Environment: Safe space where all military-connected parents of children with disabilities feel valued.

Peer Connection and Encouragement: Share stories, offer support, and build relationships with those who understand your journey.

Information Sharing: Tips and resources on deployments, school transitions, IEP/504 plans, medical care, and community supports.

REGISTER

Free

Related Events

Online – P2P Military Families Support Group

March 26 @ 12:00 pm – 12:30 pm PDT

REGISTER – Connect with military-connected parents in a welcoming space to share support through deployments, school transitions, IEP/504 plans, medical care, and daily challenges.

What We Do:

The support group provides information about available resources, services, and programs that cater to the needs of military-connected families raising children with disabilities, including educational supports, therapy options, medical services, and assistive technologies.

Inclusive and Welcoming Environment: Safe space where all military-connected parents of children with disabilities feel valued.

Peer Connection and Encouragement: Share stories, offer support, and build relationships with those who understand your journey.

Information Sharing: Tips and resources on deployments, school transitions, IEP/504 plans, medical care, and community supports.

REGISTER

Free

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What to Know About Special Education in Private Schools

Posted on by Nicol Walsh

Families who enroll their child with disabilities in a private school keep important legal protections, though these are different from those in public schools. Public school districts are still responsible for evaluating (testing) a child for special education and may offer limited support through a services plan developed together with the family and the private school.  Families who stay involved with both school systems serving their student, private and public, have the chance to ask for the services their child gets, even when a public school system has limited resources based on local priorities.

A Brief Overview

  • School districts are responsible for searching for, finding and evaluating (testing) all students who show signs of having disabilities that affect their education. This includes students who are home schooled or placed in private schools by their parents, under the Child Find section of the Individuals with Disabilities Education Act (IDEA). The evaluation shows whether a student is eligible for special education and related services.
  • Public school districts must re-evaluate students who are eligible for special education at least every three years and include them in their records, even if those students attend private schools.
  • When a family chooses to enroll their student with disabilities in a private school, they have different rights than if their student was in a public school.
  • Public school districts may offer limited support through a services plan, which is developed together with families and private schools.
  • Available services vary by district and may include specialized instruction (special education) or related services, but not all a student’s needs may be met.
  • Parents have an important part in helping teachers and school staff decide which available services and supports will be used for their child. When parents go to meetings and talk with teachers and school staff they can help create a services plan to help their child learn in school and join school activities.

Child Find and Special Education in Public and Private schools

All students have the right to be evaluated (tested) for special education if there is reason to believe a disability may affect their learning, whether they attend public or private schools. This protection is from Child Find, a part of the Individuals with Disabilities Education Act (IDEA). It requires public school districts to find and test students with possible disabilities.

An evaluation shows if a student is eligible for special education services because of a disability that affects the student’s ability to learn from a school’s general education program to the point where individualized instruction and support is needed. Once a student is found eligible for special education, the next step depends on their school placement, private or public school. A student may begin in a public school and change to a private school or begin at a private school and then change to a public school.

It’s possible that students with disabilities in private schools may not receive any special education services. One reason might be that their family doesn’t want them. In those situations, the local public district is still responsible for keeping track of that student and including them in their records. The district is also responsible for re-evaluating those students for eligibility at least every 3 years.

What should families know about private school placement?

Choosing a private school for a child with disabilities can be a thoughtful and hopeful decision, offering new opportunities and environments that may better suit a child’s needs. It also raises important questions about legal protections, available support, and what the public school district or the private school is responsible for in their child’s education. Understanding these differences is key to making informed decisions and ensuring that a child’s school experience is as inclusive and supportive as possible.

When families choose to enroll their child in a private school based on personal preference, this is called “parental placement” or “parentally placed” under IDEA and implemented under Washington Administrative Code (WAC 392-172A-04035). These students keep some protections under federal law, though they are different from the protections in public schools.

There are two types of placement which have different results for getting special education services:

Placement by a student’s IEP team

Students in public schools using special education might be placed in private schools by [their IEP team] so they can get the Free Appropriate Public Education (FAPE) that best suits their needs.  Those students keep the full rights and protections of public school special education law

FAPE includes learning and other supports specifically chosen for a student with disabilities (individualized) to help them learn and make progress toward their goals. If a student is eligible based on evaluations (testing for disability that might affect learning), IDEA requires that the public school must provide FAPE and an Individualized Education Program (IEP).

Parental Placement based on a family’s personal choice

Parentally placed students in private schools are not entitled to FAPE or the full range of services available in public schools. Instead, they may be eligible for limited support funded by federal grants to states.

  • Which supports and how much those supports depends on how much money is available. It also depends on which supports the community and public school district decide they want to spend the money on.
  • Two disability rights laws still protect students in private schools: Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Under these laws, families may request accommodations and help plan supports so their child can access learning and participate in school activities.

What special education services can private school students get?

If a student going to or moving to private school qualifies for special education services, they do not receive an IEP. Instead, they may be served through a services plan, which outlines the supports they will receive.

The public school district, the private school, and the family together develop a services plan. It outlines the specific services a student will get and how they will get them. The public school district is responsible for checking on the services and the providers who deliver them.

Unlike an IEP, a services plan does not mean the parentally placed private school student must legally get those services, and it does not guarantee the same level or types of support.

Federal laws that apply to private schools and to a student’s services plan are

Federal law protects parents in their right to participate in the development of a services plan. According to federal guidance to states by the US Department of Education, (question E-3), “Given the emphasis on parent involvement in IDEA, the Department believes that parents should have the opportunity to participate in meetings to review and develop the services plan for their child.”

What types of services may be in the plan?

Services might include:

Special education services in a specific area of learning

Related services such as occupational, physical, or speech-language therapy

Adapted Physical Education

“Accommodations” based on Section 504 of the Rehabilitation Act (Section 504) and the Americans with Disabilities Act (ADA) , which apply in private schools.

  • Section 504 is a federal law the prevents discrimination against individuals with disability, in all public and private places that are open to the public. This is why Section 504 applies to private schools. Students whose evaluation for Special Education showed they did not need an IEP but could still use help in school to be able to learn in class and participate in school activities can get supports through accommodations.
  • ADA is a federal law that also prevents discrimination against individuals with disabilities and makes sure individuals with disabilities have the chance to learn and participate at school.

Some types of accommodations are:

  • Longer time periods to finish homework and take tests
  • Use a different way to learn, like listening to an audiobook instead of reading one
  • Record a lesson instead of taking notes
  • Use a calculator
  • Giving a student a different way to show they have learned something
  • Using Assistive Technology [LINK]
  • Use a quiet area to learn or take tests
  • Use a sensory device, like a fidget device or chair band

Accommodations can also be designed for other situations, based on what a student needs.  They can be very flexible and useful in a services plan.

Where do services in the services plan take place?

Services for students with disabilities in private schools can be given in a variety of places. These may be the private school itself, a public school, or another place that parents agree to in the services plan. In most cases, transportation to get to services is the responsibility of the public school district.

The U.S. Department of Education recommends that services be provided on-site at the child’s private school whenever possible to minimize disruption to the student’s educational experience.

NOTE: The public school district responsible for providing them is the one where the private school is located—not necessarily the district where the student lives. This applies even if the student attends school in another county, state, or country.

How do they decide which services and supports will be offered by private schools?

In Washington State, each spring, public school districts meet with private schools and community members to plan how to support students with disabilities. This process is called consultation. It helps decide what services will be offered through federal programs, even if those services are different from what public school students receive.

The consultation decides:

  • Which services will be offered.
  • How services will be provided.
  • How success will be measured.

Consultation keeps going during the year and includes opportunities for private schools and families to share their thoughts. Parents are encouraged to ask how their school or district participates in this process and what services are being decided on.

Because services are decided by local priorities, not all student needs may be met. For example, a district may choose to offer speech/language services but not occupational therapy.

Once services begin–usually in early fall–the public school district works with the private school to make sure everything is running smoothly. They check in regularly to see if the services are helping students and make changes if needed.

Private schools share data like test scores or language assessments (tests) to help guide the process. Together, the district, school, and service providers look at how well the services are working and decide if anything needs to be adjusted.

How are services for private school students funded?

Federal law requires public school districts to use some of their federal IDEA Part B funds to support students with disabilities enrolled in private schools by their families. This amount is calculated with a formula called proportionate share, based on the number of eligible students attending private schools. Families can ask for specific details about the local requirements for proportionate share by going to the district’s annual consultation.

What can parents do if they disagree with educational decisions about their child’s evaluations or services?

Dispute resolution is a process used under IDEA to help parents and schools fix disagreements about a student’s need for special education, what is in a student’s IEP, and how well the school is doing providing the learning and services in the IEP. The Center for Appropriate Dispute Resolution in Special Education (CADRE) provides parent guides and videos explaining the dispute resolution options.

Parents have the right to request an Independent Educational Evaluation (IEE) at public school district expense if they disagree with an evaluation conducted by the public district (WAC 392-172A-05005). PAVE provides a sample letter to request an IEE in the article: Evaluations Part 2: Next Steps if the School Says ‘No.’

If families have concerns about how services are provided, or feel the consultation process was unfair or their input wasn’t considered, they can take the following steps:

  1. Start by contacting the public school district to discuss the concern.
  2. If unresolved, the Disagreements and Complaints page at the Office of the Superintendent of Public Instruction (OSPI), WA State’s Education Department, will show you your choices for action and gives contact information.
  3. If necessary, file a formal Community Complaint with OSPI.
  4. These steps are in place to make sure families and schools have a voice and can advocate for the services their students need.

Other dispute resolution options are limited when a student is in private school. For example:

  • Due Process hearings are only available for complaints related to Child Find.
  • Mediation is offered only for complaints related to Child Find or Community Complaint issues.
  • Families cannot demand compensatory services if the district has run out of its proportionate share funds. Compensatory services are additional services provided when a student was available to receive services as written by a program or plan; however, the school failed to provide them.

What should families keep in mind?

Students in public schools who qualify for special education receive an IEP and are entitled to FAPE. This includes individualized instruction and supports designed to help them make progress toward their goals.

Students in private schools do not receive FAPE and are not entitled to the same level of services. Instead, they may receive limited support through a services plan developed by the public school district together with the private school and the parents. These services are based on available funding and local priorities.

Families should keep in mind:

  • Accommodations under Section 504 and the ADA still apply in private schools.
  • Public school districts are responsible for evaluating students and keeping track of eligibility for special education.
  • Service plans in private schools are not guaranteed to meet all needs and do not include direct funding or reimbursements.
  • The consultation process decides which services are offered and how they are delivered.
  • Parents have the right to participate in planning and to decide to use dispute resolution if concerns arise.

Families can advocate (stand up) for their child’s needs in a private school by staying informed, asking questions, and participating in consultation. With the right information and active involvement, families can help create a learning experience that supports their child’s growth and success—no matter what type of school they go to!

Learn More

Online – Coffee & Tea Drop-In with P2P

January 26 @ 10:00 am – 10:30 am PST

REGISTER Open to parents and caregivers seeking support to navigate the various emotions and life adjustments of raising a child, youth, and adult with a disability. We can help connect families to Pierce County community resources, fosters relationships with other parents and build a support network for parents feeling isolated.

This group supports:

Open Discussions: During the meetings, parents engage in open and honest discussions about various aspects of parenting children with disabilities. Topics might include navigating the healthcare system, accessing educational resources, managing daily routines, promoting social interactions, and self-care for parents.

Shared Experiences: Parents share their personal experiences, challenges, and strategies they have found effective in raising children with disabilities.

Cultural and Language Sensitivity: Efforts are made to ensure that the group is culturally sensitive and inclusive, respecting the diverse backgrounds and needs of all participants. REGISTER

Free

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Online – Coffee & Tea Drop-In with P2P

January 12 @ 10:00 am – 10:30 am PST

REGISTER Open to parents and caregivers seeking support to navigate the various emotions and life adjustments of raising a child, youth, and adult with a disability. We can help connect families to Pierce County community resources, fosters relationships with other parents and build a support network for parents feeling isolated.

This group supports:

Open Discussions: During the meetings, parents engage in open and honest discussions about various aspects of parenting children with disabilities. Topics might include navigating the healthcare system, accessing educational resources, managing daily routines, promoting social interactions, and self-care for parents.

Shared Experiences: Parents share their personal experiences, challenges, and strategies they have found effective in raising children with disabilities.

Cultural and Language Sensitivity: Efforts are made to ensure that the group is culturally sensitive and inclusive, respecting the diverse backgrounds and needs of all participants. REGISTER

Free

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Online – P2P Early Years: Birth – 8 Support

January 7 @ 9:00 am – 9:30 am PST

REGISTER Open to parents and caregivers seeking support to navigate the various emotions and life adjustments of raising a child with a disability. We can help connect families to Pierce County community resources, foster relationships with other parents and build a support network for parents feeling isolated.

This group supports:

Open Discussions: During the meetings, parents engage in open and honest discussions about various aspects of parenting children with disabilities. Topics might include navigating the healthcare system, accessing educational resources, managing daily routines, promoting social interactions, and self-care for parents.

Shared Experiences: Parents share their personal experiences, challenges, and strategies they have found effective in raising children with disabilities.

Cultural and Language Sensitivity: Efforts are made to ensure that the group is culturally sensitive and inclusive, respecting the diverse backgrounds and needs of all participants. REGISTER

Free

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Online – P2P Military Families Support Group

January 22 @ 12:00 pm – 12:30 pm PST

REGISTER – Connect with military-connected parents in a welcoming space to share support through deployments, school transitions, IEP/504 plans, medical care, and daily challenges.

What We Do:

The support group provides information about available resources, services, and programs that cater to the needs of military-connected families raising children with disabilities, including educational supports, therapy options, medical services, and assistive technologies.

Inclusive and Welcoming Environment: Safe space where all military-connected parents of children with disabilities feel valued.

Peer Connection and Encouragement: Share stories, offer support, and build relationships with those who understand your journey.

Information Sharing: Tips and resources on deployments, school transitions, IEP/504 plans, medical care, and community supports.

REGISTER

Free

Related Events

Online – P2P Military Families Support Group

January 6 @ 6:30 pm – 7:00 pm PST

REGISTER – Connect with military-connected parents in a welcoming space to share support through deployments, school transitions, IEP/504 plans, medical care, and daily challenges.

What We Do:

The support group provides information about available resources, services, and programs that cater to the needs of military-connected families raising children with disabilities, including educational supports, therapy options, medical services, and assistive technologies.

Inclusive and Welcoming Environment: Safe space where all military-connected parents of children with disabilities feel valued.

Peer Connection and Encouragement: Share stories, offer support, and build relationships with those who understand your journey.

Information Sharing: Tips and resources on deployments, school transitions, IEP/504 plans, medical care, and community supports.

REGISTER

Free

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

Online – Special Education Workshops

January 15 @ 6:00 pm – 7:00 pm PST

Present Levels & SMART Goals: Connecting the Dots in the IEP
Discover how to align present levels with meaningful, measurable SMART IEP goals that drive progress.
Presenter: Sherry Mashburn

November 20 @ 6-7 PM
Special Education Eligibility: How Schools Decide / Elegibilidad para Educación Especial: Cómo Deciden las Escuelas
Get a clear look at how school districts determine eligibility, the evaluation process, and what it means for your child’s access to special education services. / Obtenga una visión clara de cómo los distritos escolares determinan la elegibilidad, el proceso de evaluación y lo que esto significa para el acceso de tu hijo(a) a los servicios de educación especial.


January 15 @ 6-7 PM
Accommodations, Modifications, and SDI: What’s the Difference?
Discover how to align present levels with meaningful, measurable SMART IEP goals that drive progress.
Presenter: Marie Kerr

February 19 @ 6-7 PM
Discipline in Schools: What Parents Need to Know
Explore how discipline works for students with IEPs, including suspension rules, manifestation determinations, and how schools must balance safety with your child’s rights.
Presenter: Sherry Mashburn

April 23 @ 6-7 PM
High School Transition Planning: Preparing for What’s Next / Planificación de la Transición en la Escuela Secundaria: Preparándose para lo que Sigue
Learn how transition plans prepare your child for life after high school, college, work, and independent living, and how to make sure the plan reflects your child’s voice. / Aprende cómo los planes de transición preparan a tu hijo(a) para la vida después de la escuela secundaria, la universidad, el trabajo y la vida independiente, y cómo segurarte de que el plan refleje la voz de tu hijo(a).

May 21 @ 6-7 PM
Inclusion & Belonging: What Parents Should Know
Learn how inclusionary practices help students with disabilities access the general education classroom, build friendships, and thrive, while benefiting all students.
Presenter: Marie Kerr

No registration is required!
Click to join via zoom! – Meeting ID: 737 702 3071

Free

Benton Franklin Counties PTA – bfcsepta@yahoo.com for more info!

Related Events

Tips to Help Parents Reinforce Positive Behaviors at Home

Posted on by Nicol Walsh

Changes in routine, especially during school breaks, can be challenging for families, but using Positive Behavioral Interventions and Supports (PBIS) at home can help create calm, structure, and stronger relationships. PBIS focuses on teaching expected behaviors, using clear communication, and reinforcing positive actions instead of relying on punishment. Families can build supportive routines, model emotional regulation, and use simple strategies to guide behavior at home.

A Brief Overview

  • Positive Behavioral Interventions and Supports (PBIS) is a strategy schools use to teach children about expected behavior.
  • A key PBIS principle is that punishment fails to teach what to do instead. Adults can model calm responses and self-regulation with tools like self-care and mindfulness.
  • Behavior is a form of communication. When children act out, they may be trying to express a need, feeling, or frustration they don’t yet have the words for.
  • The easiest way to change a behavior is to point out what a person does right. Remember this catchy phrase, “5-and-1 gets it done,” to ensure five positive interactions for each negative interaction.
  • Families can use school-based PBIS strategies at home to create safe, consistent, and predictable environments.
  • PAVE provides a video with key information to help families and schools analyze a child’s behavior and develop a positive behavior support plan: Behavior and School: How to Participate in the FBA/BIP Process.
  • If you come up with some great behavior support strategies this summer, be sure to share them with the school in the fall!

Introduction

Changes in routine and seasonal transitions can cause emotional upheaval for families. A few strategies, described below, might help families keep things chill this summer and beyond.

These ideas come from education, where research has helped teachers see the benefits from using Positive Behavioral Interventions and Supports (PBIS). PBIS has been implemented in more than 26,000 U.S. schools. The PBIS framework has been shown to decrease disciplinary removals and improve student outcomes, including grades and graduation rates. When done well, PBIS provides positive social skills, communication strategies and “restorative justice,” (working it out instead of punishing) and may prevent 80-90 percent of problem behaviors.

PBIS is often part of a broader approach called Multi-Tiered System of Supports (MTSS), which helps schools and families work together to meet academic, behavioral, and emotional needs through different levels of support.

Positive support makes learning easier

PBIS research highlights problems with punishments, which are called “aversive interventions.” Research shows that a punished child is likely to go into an emotionally dysregulated state (fight/flight/freeze) that actually blocks learning. Chances are low that the child will know what to do next time because the punishment didn’t provide a learning opportunity.

PBIS teaches what to do instead – and how to do it. Adults who calmly guide children and youth toward a new way of problem-solving can interrupt or prevent an escalation and help the child make better and better choices moving forward.

Keep in mind that adults need to stay regulated to help children. PAVE provides resources to help adults work on their own self-control and support their children:

Behavior is a child’s attempt to communicate

Simple, consistent, predictable language is critical for teaching and reinforcing behavior, says Kelcey Schmitz, who works for the University of Washington School Mental Health Assessment, Research, and Training (SMART) Center.

“PBIS is a game changer for children and youth with behavior challenges and their teachers and caregivers,” Schmitz says. “In fact, everyone can benefit from PBIS. Behavior is a form of communication, and PBIS aims to reduce problem behavior by increasing appropriate behavior and ultimately improving quality of life for everyone. The same approaches used by schools to prevent problem behaviors and create positive, safe, consistent and predictable environments can be used by families at home.”

Schmitz, an MTSS training and technical assistance specialist, provides the following specific tips for creating a successful PBIS home environment.

Support Positive Behavior before there is a problem

PBIS is set up with three layers – called tiers – of support. The parent-child relationship is strengthened by loving and positive interactions at each level.

Tier 1 support is about getting busy before there is a problem. Much like learning to wash hands to prevent getting sick, expected behavior is taught and modeled to prevent unexpected behaviors.  Parents can look at their own actions and choices and consider what children will see as examples of being respectful, responsible, and safe.

Tiers 2 and 3 are where adults provide more support for specific behaviors that are getting in the way of relationships or how the child or youth functions. In a school setting, Tier 2 is for students who need a social group or some extra teaching, practice, and reinforcement.

Tier 3 support includes a Functional Behavioral Assessment (FBA) to find out why the behavior is occurring, and an individualized Behavior Intervention Plan (BIP). PAVE provides a video: Behavior and School: How to Participate in the FBA/BIP Process.

Any student may access supports that include aspects of Social Emotional Learning at all three Tiers. At home, Tiers 2 and 3 naturally will be more blended and may include support from a community provider. Note that targeted interventions in Tiers 2-3 work best when Tier 1 is already well established.

Define, teach, and routinely acknowledge family expectations

Discuss how you want to live as a family and identify some “pillars” (important, building-block concepts) that represent what you value. Talk about what those pillars look, and sound like in everyday routines. To help the family remember and be consistent, choose only 3-5 and create positive statements about them. Here are a few examples:

  • Speak in a respectful voice.
  • Be responsible for your actions.
  • Be safe; keep hands, feet, and objects to self.

Identify a couple of “hot spots” to begin. Challenging behaviors often occur within routines. Perhaps mornings or mealtimes create hot spots for the family. After discussing 1-2 ways to be respectful, responsible, and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” for practicing the plan and assign each family member one pillar to teach to the rest.

Behaviors that get attention get repeated. Notice when a child does the right thing and say something about each success: “I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right!

Remember this catchy phrase, “5-and-1 gets it done” to ensure five positive interactions for each negative interaction. When the expected behavior becomes routine, the reinforcement can fade away.

Create engaging and predictable routines

Children crave structure and routine. Adults may look forward to a relaxing evening or weekend, but kids often need regular activity and engagement. Consider that either the kids are busy, or the adults are busy managing bored kids!

Use visuals to create predictability. A visual schedule can display major routines of the day with pictures that are drawn, real photos, or cut-outs from magazines. Create a schedule together, if possible.  Parents can ask a child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

Teach, pre-teach, and re-teach. Children need to learn behavior just like they learn colors and shapes. A quick reminder can help reinforce a developing skill: “When we get in the car, sit up, buckle up, and smile!”

Give transition warnings or cues to signal the end of one activity and the beginning of another: “In five minutes, it will be bath time.”

First/then statements set up a child for delayed gratification: “First take your bath; then we can play dolls.”

Focus on Go instead of Stop. Children often tune out words like No, Don’t and Stop and only hear the word that comes next, which is what an adult is trying to avoid. Tell a child what to do instead of what not to do: “Take your plate and put it in the sink.” Save Stop and No for dangerous circumstances that need a quick reaction.

Choices prevent power struggles: “Would you rather play for five more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or the green ones.”

While these strategies may not eliminate all problem behaviors, they create consistency, predictability, and a more positive atmosphere. They teach new skills to help children get their needs met. The solid foundation will help even if challenging behaviors persist by creating a bedrock for additional layers of support.

Final Thoughts

Supporting positive behavior at home doesn’t require perfection—just patience, consistency, and a willingness to learn alongside your child. By using clear communication, setting routines, and teaching expected behaviors, families can create a calm and connected environment where everyone thrives. These strategies not only make summer smoother but also build skills that carry into the school year. If you come up with some great behavior support strategies this summer, be sure to share them with the school in the fall! Working together, families and schools can create strong, supportive systems that help every child succeed.

Learn More

Families and Youth Have a Voice on Mental Health Matters Through FYSPRT

Posted on by Nicol Walsh

A Brief Overview

  • FYSPRT (pronounced fiss-burt) is a hard acronym to learn, but it’s worth the effort for families and young people who want to talk about improving mental healthcare systems around the state.
  • Here’s what FYSPRT means: Family members, Youth and System Partners (professionals) get together at a “Round Table” (meaning everyone has an equal voice) to talk about issues related to emotional distress, mental illness and/or substance-use disorder. All participants share ideas about what helps and what could make things better.
  • The Washington State Health Care Authority (HCA) provides a map of the 10 FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.
  • FYSPRT began after a class-action lawsuit against the state, TR v Dreyfus. The litigation resulted in development of the state’s out-patient mental-health services program for youth—Wraparound with Intensive Services (WISe).
  • FYSPRT is a place where families provide feedback about WISe, but all community members are welcome—regardless of age or agency affiliation.
  • Some regional FYSPRTs sponsor separate meetings and social events for youth.

Full Article

Parents and young people who struggle with emotional distress, mental illness and/or substance-use disorder can feel powerless to affect change in a complicated medical system. The Family, Youth and System Partner Round Table (FYSPRT) provides a meeting space for family members and professionals to talk about what’s working and what isn’t working in the state’s mental health systems. The groups also provide informal networking and can provide ways for families to meet up and support one another under challenging circumstances.

The state sponsors 10 FYSPRT groups to serve every county: A list of the groups and which counties they serve is included at the end of this article. Each group reports to a statewide FYSPRT, which provides information to state government to influence policy. The Washington State Health Care Authority (HCA) provides a map of the FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.

FYSPRT began as part of a class-action lawsuit against the state, referred to as TR v Dreyfus. The litigation began in 2009, and settlements were mediated in 2012-13. The federal court found that Washington wasn’t providing adequate mental health services to youth and required that the state start delivering intensive community-based mental health treatment. The state responded by developing the Wraparound with Intensive Services (WISe) program for youth under 21 who are eligible for Medicaid. WISe teams provide a wide range of therapies and supports with a goal to keep the young person out of the hospital, which costs more and can be traumatizing.

Young people under 18 who need residential care are referred to the Children’s Long-Term Inpatient program: PAVE’s website provides an article about CLIP.

To provide accountability for the delivery of WISe services, the state created FYSPRT as a forum for families to provide feedback about how the program is working. The mission is to provide an equal platform for everyone within the community to strengthen resources and create new approaches to address behavioral needs of children and youth.

FYSPRT provides a space where youth impacted by behavioral health issues and their family members can share ideas about what works well and what would work better. The FYSPRT model is based on the belief that everyone’s unique perspective is equally important, and everyone is invited. FYSPRT meetings are open to all interested community members. Each community has unique participants depending on what agencies work in the cities and towns within the region.

In order to create an atmosphere of equality, the FYSPRTs are led by a combination of youth, family members, and systems partners.  While a healthcare organization often works as the convener, the leadership is split between the Tri-Leads, who are elected from their membership. These include Youth Tri-Leads, Family Tri-Leads, and System Partner Tri-Leads. For many parents and youth, FYSPRT becomes a place to bond and connect to support one another. Some regional FYSPRTs include separate meetings for youth, and those groups can become a key social outlet.

Staff who serve families through WISe are key participants. Other attendees are case managers from the state’s Medicaid-provider agencies, behavioral health counselors, foster-care workers, staff of homeless programs and staff and volunteers from affiliates of the National Alliance on Mental Illness (NAMI). Other participants are leaders of support groups for youth in recovery or working with issues related to gender identity or sexuality. PAVE staff are regular attendees in many regions.

Every area of the state of Washington has its own FYSPRT, overseen by the Health Care Authority.  Each of the ten FYSPRT regions is comprised of a single county or up to eight adjoining counties. In order to create greater participation from the general public, transportation and childcare stipends are available for families and youth in most areas. Some groups provide free meals for everyone and/or gift card incentives for the families and young people who attend. Family and Youth who act as leaders (Tri-Leads) along with system partners are paid for their participation.

Here are links to each regional FYSPRT’s website and a list of the counties each represents:

System of Care Partnership – Mason, Thurston

Great Rivers Regional FYSPRT – Cowlitz, Grays Harbor, Lewis, Pacific

HI-FYVE – Pierce

King County Community Collaborative (KC3) – King

North Central Washington FYSPRT – Chelan, Douglas, Grant, Okanogan

North Sound Youth and Family Coalition – Island, San Juan, Snohomish, Skagit, Whatcom

Northeast FYSPRT – Adams, Ferry, Lincoln, Pend Oreille, Spokane, Stevens

Salish FYSPRT – Clallam, Jefferson, Kitsap

Southeast FYSPRT – Asotin, Benton, Columbia, Franklin, Garfield, Kittitas, Whitman, Yakima

Southwest FYSPRT – Clark, Klickitat, Skamania

Holiday Survival Tips For Families with Special Healthcare Needs

Posted on by Nicol Walsh

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 

A Brief Overview 

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. 

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: This is part of a series on the topic of creating joyful holidays for everyone:

Aging Care:

Complex Child: