Respiratory Disease Health Advisory

Respiratory Disease Health Advisory scroll to get more information

Description of the above graphic:

Washington State is experiencing an overwhelming number of children and babies being hospitalized for respiratory diseases. The CDC has issued a Health Advisory for the state as the rise in the Flu, Respiratory Syncytial Virus (RSV), and COVID pushes the limits of pediatric hospitals.

Protect children by making sure that they are up to date on flu shots and COVID boosters. Vaccinations reduce the severity of an infection if a child is exposed.

Remember lessons learned in the first COVID surges. Wear masks in crowded spaces. Wash hands frequently and use hand sanitizer to reduce the risks of infection.

What should you do?

If your infant or child is sick, here are some online resources to help: Seattle Children’s Bronchiolitis Care Packet at seattlechildrens.org and get information at kidshealth.org.

If your child is on Apple Health, here are the nurse support line numbers:

Amerigroup (AMS) 1-866-864-2544

Community Health Plan (CHPW) 1-866-418-2920

Coordinated Care (CCW) 1-877-644-4613

Molina Health Care (MHC) 1-888-275-8750

United Health Care (UHC) 1-877-543-3409

Life After High School: Tools for Transition

Helping a student with disabilities prepare for life after high school requires thoughtful organization and planning. This presentation describes three ways to support this important time of life:

  1. High School and Beyond Plan
  2. IEP Transition Plan
  3. Agency Support

Here are resources referenced in the video:

  • OSPI Model Forms: Scroll down to find and open the IEP Form with Secondary Transition
  • OSPI Graduation Requirements, including links to download the High School and Beyond Plan in various languages
  • DDA: Developmental Disabilities Administration
  • DVR: Division of Vocational Rehabilitation
  • TVR: Tribal Vocational Rehabilitation, for Native Americans with disabilities
  • DSB: Department of Services for the Blind, for people with blindness or low vision
  • WAC 392-172A-03090, including description of Age of Majority rights that transfer to the student at age 18
  • PAVE article about Supported Decision Making
  • OSPI: The Office of Superintendent of Public Instruction has a family liaison for special education
  • OEO: The Office of the Educational Ombuds provides online resources and 1:1 support
  • OCR: The Office for Civil Rights can help with questions about equity and access
  • ESD: Nine Education Service Districts; each has a behavioral health navigator, and some are licensed to provide behavioral health services
  • Developmental Disabilities Ombuds
  • PAVE School to Adulthood Toolkit

Disability History Month Provides Opportunities for Reflection

A Brief Overview

  • Disability History and Awareness Month (RCW 28A.230.158) takes place during October to increase awareness, respect, and acceptance for people with disabilities, and to bring a greater sense of pride to people with disabilities.
  • State law requires public schools to promote educational activities that provide instruction, awareness, and understanding of disability history and people with disabilities.
  • The Office of Superintendent of Public Instruction (OSPI) provides a list of resources and educational opportunities for recognizing and celebrating Disability History and Awareness.
  • The Office of the Educational Ombuds (OEO), in collaboration with Rooted in Rights, created a teaching resource: One Out of Five: Disability History and Pride Project.
  • This article highlights some key laws and legal actions that have impacted school access for students with disabilities in Washington State and nationally. Scroll down for a visual version of our timeline.

Full Article

Disability History and Awareness Month in October provides an opportunity for policy makers, teachers, families and people throughout communities to reflect on the disability rights movement. Equity and access are protected by law, yet there is still work to be done to ensure that laws are upheld and that everyone has fair access to opportunities.

Parent Centers like PAVE participate in making sure that families and individuals understand disability rights and how history has impacted current protections and the language of disability rights. Following is a timeline of key actions at the state and federal level.

Please note that this article is an overview and does not include every law or legal action involved in the long and complicated history of disability rights.

1954​: Brown versus Topeka Board of Education​

  • Separate but Equal was outlawed, and Equal Educational Opportunities became a right of all citizens. ​

1964​: Civil Rights Act​

  • Prohibited state and local governments from denying access to public facilities, establishing equality as a legal right and discrimination as illegal.  
  • Desegregated public schools and authorized the U.S. Attorney General to file lawsuits for suspected violations. ​
  • Established that agencies could lose federal funding for breaking the law.

1971: Washington guarantees special education rights

In 1971, the small but fierce Education for All Committee — Evelyn Chapman, Katie Dolan, Janet Taggart, Cecile Lindquist — worked with two law students to craft and advocate for passage of legislation (House Bill 90) to mandate public education for all children with disabilities age 3–21. HB 90 became Chapter 66 of the Laws of 1971, entitled Educational Opportunities for Handicapped Children, generally referred to as the Education for All Act. Washington’s special education law is now codified at RCW 28A.155

1972: Key precedents are established in other states

  1. P.A.R.C. v. Commonwealth of Pennsylvania*
    • Established Free Public Education for all students.
  2. Mills versus Board of Education of DC
    • Established accessible, free and suitable education for all children of school age, regardless of disability or impairment

In Pennsylvania parents led a class action suit that established that all children, regardless of their skill level, have a right to go to school for free. A few months later, a Washington, DC, court ruled that education should be free and accessible and “suitable.” These two cases set up the country to formalize the right of any student with a disability to a Free Appropriate Public Education (FAPE), which is the language of today’s law.

*Note: PAVE recognizes that past terms have led to stigma; using person-first language is our priority. To learn more about how individuals with intellectual disabilities earned education rights through these landmark cases, refer to Disability Justice.

1973: The Rehabilitation Act

The rights of a person with a disability to get the help they need in order to be successful in school and at work–and to access to any public place or program–was firmly established by the federal Rehabilitation Act of 1973, which is still an active law upheld by the Office for Civil Rights. Part of it, Section 504, defines disability as any impairment that significantly impacts a major life activity. When a student in school meets that criteria because of a physical or mental condition, the school is bound by this law to provide what a student needs to access their right to a Free Appropriate Public Education (FAPE).

1975: The Education for All Handicapped Children Act

  • Required public schools to provide equal access to free educational programming
  • Provided for evaluation, a specific educational plan and parent input
  • Declared that special education should emulate as closely as possible the educational experiences of non-disabled students
  • Contained a provision for education in the Least Restrictive Environment (LRE)
  • Provided dispute resolution procedures

The Act was the first federal law that was specific to the education of children with disabilities. The law used the word “emulate” to indicate that students with disabilities had the right to a school experience that would look as much like a typical student’s program as possible. The additional requirement for education in the Least Restrictive Environment (LRE) further motivated schools to work harder to include students of many abilities in general education classrooms. This 1975 law also set up specific guidance for parents to take action if they disagree with the school. Parents are informed about their rights through the Procedural Safeguards that are provided at IEP and other official meetings.

1979: PAVE began as one of the country’s first six parent centers

Pierce County was among six locations across the country to receive training in Special Education rights. Thirty Washington parents got trained about Special Education law in 1979. The goal was for those parents to share information throughout the state. To help this movement, a clearinghouse named Closer Look provided intense training for these pioneering parents about the laws. Closer Look evolved in the National Information Center for Children and Youth with Disabilities (NICHCY), and much of that work has been updated and preserved by the Center for Parent Information and Resources (CPIR), the current technical assistance center for PAVE and other parent centers across the country. CPIR provides free information to professionals and parents through ParentCenterHub.org.

1981: Federal waiver program enables more children to get help at home

The federal government created a system through Medicaid to provide a new way to care for children and adults with disabilities in their homes. The new system provided a financial mechanism called a “waiver” to pay for in-home care. Once the first state Medicaid agency applied for and received a waiver from the federal government, other states began to apply. As a result, thousands of children who in the past might have lived in hospitals or state institutions now live at home. PAVE’s Family to Family Health Information Center is part of a nationwide Family Voices community that helps families understand and apply for these waivers and manage other aspects of care for their loved ones with disabilities and complex medical needs.

1988: Washington State recognizes the capacity of all persons

The Washington legislature passed RCW 71A.10.015 to recognize “the capacity of all persons, including those with developmental disabilities, to be personally and socially productive.

“The legislature further recognizes the state’s obligation to provide aid to persons with developmental disabilities through a uniform, coordinated system of services to enable them to achieve a greater measure of independence and fulfillment and to enjoy all rights and privileges under the Constitution and laws of the United States and the state of Washington.”

1990: Americans with Disabilities Act (ADA)

  • Prohibits disability discrimination by federal and state government, including schools
  • Applies to all schools, workplaces—any space, public or private, that provides goods or services to the public
  • Covers people of all ages, including those who are discriminated against because they are perceived to have a disability, even if they don’t have one

Understood.org provides materials specifically designed for parents to provide basic understanding about ADA protections in schools. Included are printable fact sheets and instructions for filing formal complaints with various public agencies. Many ADA protections mirror those provided through Section 504 of the Rehabilitation Act of 1973. Key concepts in both are equity and access. The ADA and Section 504 protect a person throughout the lifespan. The Office for Civil Rights provides guidance for students with disabilities as they plan for higher education.

1990: Individuals with Disabilities Education Act (IDEA)

  • All children with disabilities get a Free Appropriate Public Education (FAPE)to be ready for further education, jobs and life! 
  • The rights of children with disabilities and their parents are protected. 
  • The law requires schools to assess a child’s program, to make sure it’s working, and the child is benefiting. 

When Congress passed the Individuals with Disabilities Act in 1990, the acronym FAPE (Free Appropriate Public Education) came into being. Now FAPE is key to this entitlement law. Entitlement means that a child with unique needs gets those needs served on an individual basis, not based on a system or program that’s already built and available.

The federal law drives how states design their own special education policies and procedures, which in our state are part of the Washington Administrative Codes (WACs). Title 34, Part 104, is the non-discrimination federal statute under the Office for Civil Rights Department of Education, and in Washington State rules for the provision of special education are in chapter 392-172A of the WAC. 

1992: Rehabilitation Act Amendments

Amendments to the 1973 Act put the abilities and choices of persons with a disability first and challenge the services system and the greater community to support individuals to work, live, and participate in the community. The Amendments are guided by the presumption of ability. A person with a disability, regardless of the severity of the disability, can achieve employment and other rehabilitation goals, if the appropriate services and supports are made available. The primary responsibilities of the vocational rehabilitation system are described:

  • Assist the individual with a disability to make informed choices about potential employment outcomes that result in integration and inclusion in the community.
  • Develop an individualized rehabilitation program with the full participation of the person with a disability.
  • Match the needs and interests reflected in the individualized programs with appropriate services and supports.
  • Proactively foster cooperative working relationships with other agencies and programs, including local education authorities, to unify the service system.
  • Emphasize the quality of services and the accountability that service representatives have to honor the dignity. participation, and growth of persons with disabilities as their employment interests develop over time.

2000: Settlegoode v. Portland Public Schools

  • Appropriate staff training is an important aspect of FAPE.
  • School staff have the right to advocate for children without retaliation.
  • The lawsuit was filed by a former special education PE teacher who was fired after highlighting errors in IEP implementation.

2004: IDEA Amendments

IDEA was amended by the Individuals with Disabilities Education Improvement Act of 2004. Several provisions aligned IDEA with the 2001 No Child Left Behind Act. Here are a few examples of updates:

  • IDEIA authorized 15 states to implement 3-year IEPs on a trial basis when parents continually agree. 
  • Drawing on the report of the President’s Commission on Excellence in Special Education, the law revised the requirements for evaluating children with learning disabilities.
  • More concrete provisions relating to discipline of special education students were added. These are influencing current work to revise disciplinary standards in Washington State.
  • Students are entitled to education in regular classrooms, with needed supplementary aides and services, “to the maximum extent appropriate” under the principle of Least Restrictive Environment (LRE)

2008: Washington schools are required to celebrate disability history each October

In passing a law to establish Disability History and Awareness Month (RCW 28A.230.158), the legislature determined that: “annually recognizing disability history throughout our entire public educational system, from kindergarten through grade twelve and at our colleges and universities, during the month of October will help to increase awareness and understanding of the contributions that people with disabilities in our state, nation, and the world have made to our society. The legislature further finds that recognizing disability history will increase respect and promote acceptance and inclusion of people with disabilities. The legislature further finds that recognizing disability history will inspire students with disabilities to feel a greater sense of pride, reduce harassment and bullying, and help keep students with disabilities in school.”

2012 Employment First in Washington State

The Washington legislature passed Senate Bill 6384 for Employment First requirements for clients 21 and older within the Developmental Disabilities Administration (DDA). In accordance with the new law, “The program should emphasize support for the clients so that they are able to participate in activities that integrate them into their community and support independent living and skills.”

The legislation:

  • Supports employment as the first choice for adults of working age
  • Incorporates the right to transition to a community access program after nine months in an employment service
  • Clarifies that a client receive only one service option at a time (employment or community access).

A DDA Policy Document describes history that led to passage of the legislation and rules for implementation.

2013: Doug C. v Hawaii

  • Parents must be included in the IEP process.
  • The lawsuit was filed in behalf of a parent who was not included in a school meeting at which key IEP decisions were made.

2015: Every Student Succeeds Act (ESSA)

  • Reauthorizes 50-year-old Elementary and Secondary Education Act (ESEA), the nation’s national education law.
  • Provides all children in the United States the right to a free public education “to ensure that every child achieves.”
  • Advances equity by upholding critical protections for America’s disadvantaged and high-need students.
  • Requires—for the first time—that all students in America be taught to high academic standards that will prepare them to succeed in college and careers.
  • Ensures that vital information is provided to educators, families, students, and communities through annual statewide assessments that measure student progress toward high standards.
  • Encourages evidence-based interventions.
  • Sustains and expands access to high-quality preschool.
  • Maintains accountability in low-performing schools, where groups of students are not making progress and where graduation rates are low.

2017: Endrew F versus Douglas County School District

  • The Supreme Court issued a unanimous decision that under the IDEA a school must offer an IEP reasonably calculated to enable a child to make progress, in light of the child’s circumstances of disability.
  • The “de minimis standard” is overruled; trivial progress isn’t enough.
  • Grade-level standards are prioritized.
  • Parent participation is emphasized

The Endrew F case is still being discussed by a variety of agencies, and many professionals from groups that oversee educational process are calling on parents to hold schools accountable to these new standards. Writing for the court, Chief Justice John G. Roberts said that trivial progress would no longer meet the standard of FAPE and that the IDEA aims for grade level advancement for children with disabilities who can be educated in the regular classroom. A child making trivial progress, he said, would be tantamount to “sitting idly … awaiting the time when they were old enough to drop out.”

The above information is shown below as an infographic. You can click on the image and access the PDF of the same:

Infographic of the Disability Rights Timeline. Visit wapave.org and type disability History on the search bar to read the article and receive accessible information included  in this infographic

View this infographic in PDF form

Sample Letter to Request an IEP Meeting

When a student has an Individualized Education Program (IEP), their IEP team is required to meet and review the program at least every year. The annual review date is listed on the cover page of the IEP document. Family caregivers can request additional meetings, and this article includes a sample letter families can use to formally request an IEP meeting.

Keep in mind that parents have the right to participate in meetings where decisions are made about eligibility or changes to a student’s special education services. A court decision in 2013 further affirmed those rights. More information about that case, Doug C. Versus Hawaii, is included in an article from PAVE: Parent Participation in Special Education Process is a Priority Under Federal Law.

An IEP meeting request letter can be submitted to school staff and to district staff. Family participants have the right to invite guests to the meeting for support and to provide additional expertise about the student.

Best practice is for the school and parents to communicate about who will attend the meeting. If required school staff are unable to attend a meeting, parents must sign consent for their absence. Under state law (WAC 392-172A-03095), a school district must ensure that each IEP team includes:

  • Parent/legal guardian
  • At least one general education teacher
  • At least one special education teacher of the student
  • District staff qualified in the provision of specially designed instruction (SDI), knowledgeable about the district’s general education curriculum, and knowledgeable about the district’s available resources
  • Someone (usually a school psychologist) qualified to interpret the instructional implications of evaluation results
  • At the discretion of the parent or the school district, other individuals who have knowledge or special expertise regarding the student, including related services personnel
  • Whenever appropriate, the student (required to be invited once a transition plan is added, by age 16 or earlier)

The school’s meeting invitation lists attendees and can clarify when the meeting will start and end and the purpose or agenda for the meeting. PAVE provides an article about how families can prepare for a meeting by creating a handout for the team.

Note that in the above list, in accordance with state laws, the IEP team includes an individual who is knowledgeable about district resources. Sometimes a school principal or other staff member fulfills that role. Families or school staff can request attendance by someone who works in the district’s special education department. If the family is asking for something that might cost additional money or require a change in placement to another location inside or outside the district, it can be critical to have a district special education representative involved in decision-making.

TIP: If a school administrator in a meeting indicates that “we’ll have to check with district and get back with you on that,” the IEP team is probably incomplete. Parents can request another meeting with all required attendees.

Parents can request to meet with the IEP team any time of year if they have questions or concerns. Here are a few examples of reasons parents might request an IEP meeting:

  • New diagnosis or information about a student’s disability
  • Frequent disciplinary actions
  • Student is refusing to go to school
  • Academic struggles
  • Lack of meaningful progress toward IEP goals (PAVE provides an article with a handout about SMART goals and progress monitoring
  • Behavior plan isn’t working
  • Placement isn’t working
  • Parent wants to discuss further evaluation by the school or an independent agency

Below is a sample letter families can use when writing a request for an IEP meeting. If sending through email, the format can be adjusted to exclude street addresses:

Your Name
Street Address
City, State, Zip
Date

Name (if known, otherwise use title only)
Title/Director of Special Education/Program Coordinator
School District
Street Address
City, State, Zip

Dear Name (if known, otherwise use title only):

I am requesting an IEP meeting regarding the program for my student, NAME, (BD: 00-00-0000). I have some concerns that I believe need to be addressed by the entire team. I understand that I will be involved in scheduling so I can participate fully as an equal member of the IEP team and that I will be notified in writing when a meeting is arranged.

My hope is that this meeting will provide an opportunity for collaborative problem solving. I want to make sure (NAME’s) IEP provides enough support for improvement and learning within their capabilities. I look forward to discussing my specific concerns about: (add specific concerns here).

  • Use bullet points if the list becomes long.
  • Use bullet points if the list becomes long.
  • Use bullet points if the list becomes long.

I have attached documentation from (list any outside providers who provided letters or reports and highlight any specific recommendations from those attached documents).

I would like a copy of the most recent IEP (or amended Draft IEP) with enough time to review it so I can prepare for our team meeting.

I’m also requesting copies of (any other documents you wish to review before the meeting: evaluation reports, teacher progress notes, state curricula…).

I appreciate your help in behalf of my student. If you have any questions please call me at (telephone number) or email me at (email address, optional).

Sincerely,

Your Name

CC: (Names and titles of anyone else you give copies to)

You can email this letter or send it by certified mail (keep your receipt), or hand carry it to the district office and get a date/time receipt. Remember to keep a copy of this letter and all school-related correspondence for your records. Get organized with a binder or a filing system that will help you keep track of all letters, meetings, conversations, etc. These documents will be important for you and your child for many years to come, including when your child transitions out of school.

Please Note: It is the policy of PAVE to provide support, information, and training for families, professionals, and interested others on a number of topics. In no way do these activities constitute providing legal advice. PAVE is not a legal firm or a legal services agency. This message and accompanying documents are covered by the Electronic Communications Privacy Act, 18 U.S.C. §§ 2510-2521, and contain information intended for the specified individual(s) only. 

The contents of this document were developed under a grant from the US Department of Education. The contents do not necessarily represent the policy of the US Department of Education and you should not assume endorsement by the Federal Government.

Back To School Checklist!

Late summer is the time to gather school supplies, find out what time the school bus will pick up and drop off, and prepare to find new classrooms and meet new teachers. Parents of students with disabilities have some additional things to check off the list to be ready for the year ahead.

Super important: Before school starts, make sure you know what’s included in your child’s Individualized Education Program (IEP), Section 504 Plan, and/or Behavior Intervention Plan (BIP). For a more detailed article about getting ready for a new school year, see PAVE’s article: Tips to Help Parents Plan for the Upcoming School Year.

Here’s a checklist to help you get organized:

  • Create a one-pager about your child to share with school staff
    • Include a picture
    • List child’s talents and strengths—your bragging points
    • Describe behavioral strategies that motivate your child
    • Mention any needs related to allergy, diet, or sensory
    • Highlight important accommodations, interventions, and supports from the 504 Plan, IEP, or BIP
  • Make a list of questions for your next meeting to discuss the IEP, BIP, or 504 Plan
    • Do you understand the goals and what skills your child is working on?
    • Do the present levels of performance match your child’s current development?
    • Do accommodations and modifications sound likely to work?
    • Do you understand the target and replacement behaviors being tracked and taught by a Behavior Intervention Plan (BIP)?
    • Will the child’s transportation needs be met?
  • Mark your calendar for about a week before school starts to visit school and/or send an email to teachers, the IEP case manager, and/or your child’s counselor
    • Share the one-pager you built!
    • Ask school staff how they prefer to communicate—email, phone, a notebook sent back and forth between home and school?
    • Get clear about what you want and need, and collaborate to arrange a communication plan that will work for everyone
    • A communication plan between home and school can be listed as an accommodation on an IEP or 504 Plan; plan to ask for your communication plan to be written into the document at the next formal meeting
  • Design a communication log book
    • Can be a physical or digital notebook
    • Plan to write notes every time you speak with someone about your child’s needs or services. Include the date, the person’s full name and title, and information about the discussion
    • Log every communication, whether it happens in the hallway, on the phone, through text, via email, or something else
    • After every communication, plan to send an email thanking the person for their input and reviewing what was discussed and any promised actions—now that conversation is “in writing”
    • Print emails to include in your physical log book or copy/paste to include in a digital file
    • Having everything in writing will help you confirm what did/didn’t happen as promised: “If it’s not written down, it didn’t happen.”
  • Consider if you want to request more information about the credentials of teachers or providers working with your child. Here are some things you can ask about:
    • Who is providing which services and supports?
    • Who is designing the specially designed instruction (SDI)? (SDI helps a child make progress toward IEP goals)
    • What training did these staff receive, or are there training needs for the district to consider?
  • Ask  the special education teacher or 504 case manager how you can share information about your child, such as a one-pager, with school team members. This includes paraprofessionals or aids and other members of the school team.
    • Parents have important information that benefit all school team members. Ask who has access to your child’s IEP or 504 Plan and how you can support ensuring team members receive information
  • Have thank you notes ready to write and share!
    • Keep in mind that showing someone you appreciate their efforts can reinforce good work
  • Celebrate your child’s return to school
    • Do the bus dance on the first morning back to school!
    • Be ready to welcome your child home with love and encouragement. You can ask questions and/or read notes from your child’s teachers that help your loved one reflect on their day and share about the new friends and helpers they met at school

Below is an infographic of the above information.

Tip! you can click on the image and access an accessible PDF to print and keep handy.

Back to School Checklist click to find the accessible PDF

Click to access an accessible PDF of the infographic above

Self-Care is Critical for Caregivers with Unique Challenges

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

Full Article

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

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

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

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

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

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

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

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

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

Connect with others

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

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

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

Here are additional places to find one another:

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

Get Enough Sleep

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

Move the Body

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

Here is information from the Mayo Clinic about exercise:

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

Be Mindful

Mindfulness can be as simple as the Two Feet, One Breath practice described at the top of this article. Mindfulness means paying attention or putting your full attention into something.

Focusing the mind can be fun and simple and doesn’t have to be quiet. Here are a few ways to practice that don’t involve a yoga mat or a meditation cushion:

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

Schedule Time

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

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

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

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

Seek Help

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

Parents of children with developmental disabilities can seek in-home personal care services and request a waiver for respite care from the Developmental Disabilities Administration (DDA). Here are resources to help with that process:

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

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

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

Friendships & Taking Care of Yourself: PURPAS

Great takeaways:

  • Meet new people, have fun, and talk about what you like to do!
  • Find a good new friend, learn to take the bus, manage your money, and learn how to be more presentable.
  • The gym helped me get more in shape and gave me my first job!

“I just wanted to better myself.  To be like a superhero.  And after doing my resume and sending it to the online site << boom >> I got a job!  And joining PURPAS I got new friends and learn how to take of myself.” – Randy

We envision an inclusive community that values the unique abilities, cultures, voices, contributions, and potential of all individuals.  Please join us in sharing Randy’s Recipe for Empowerment!

And if you, or those you know, can make a year-end donation, of any amount, thank you!

Navigating Life After Early Intervention Services

Great takeaways:

  • Get on waitlists and get engaged in community programs!
  • Connect with other parents
  • Grace for yourself & find what works for you!

“Our children are children.  Sometimes they are not ready, and we’re not ready to handle this now.  For example, cold and flu season can be hard to start or add more therapies.  We learned from our wrong turns.”  – Andrea

We hope you found hope, inspiration, and ideas for you, your child, or others you may know. And if you know We hope you found hope, inspiration, and ideas for you, your child, or others you may know.  And if you know of anyone able to donate…any amount – $5, $10, $50.  All donations will help PAVE provide support, training, information, and resources to empower and give voice to individuals, youth and families impacted by disabilities.   Please pass on Arianna & Andrea’s Recipe for Empowerment!

Make Good Feelings Stick Like Velcro

This video provides a mindfulness practice to make good feelings stick like Velcro. When the mind focuses on what’s going well, stress can slide off like Teflon. We’re sort of hard-wired to do the opposite. Click to understand why and learn a trick to hack your nervous system to spend more time thinking about good stuff and feeling mentally well.