Tag: disability

Evaluations Part 1: Where to Start When a Student Needs Special Help at School

Posted on by Nicol Walsh

When a student is struggling in school and may have a disability, families can request a formal evaluation to explore eligibility for special education services. The process includes submitting a written referral, participating in a team-based assessment, and using the results to guide individualized supports. Even if a student doesn’t qualify for an IEP, other protections and accommodations may still be available. 

A Brief Overview 

  • Special Education is provided through the Individualized Education Program (IEP) for students with qualifying disabilities. 
  • Anyone with knowledge of a student’s needs can make a referral for evaluation. 
  • If a student is struggling and has a known or suspected disability, the school must evaluate to determine eligibility for special education. 
  • Referrals must be made in writing, and schools must support families in removing barriers to this process, including providing translation and interpretation. 
  • To qualify for an IEP, a student must meet three criteria: have a disability, experience adverse educational impact, and need Specially Designed Instruction (SDI). 
  • Families are active participants in the evaluation and IEP development process and may request revisions to evaluation summaries and IEP statements. 
  • Eligibility is determined based on how a disability affects learning, not solely on a medical diagnosis, and must fit one of 14 federally recognized categories. 
  • Schools follow specific timelines for responding to referrals, completing evaluations, and developing IEPs.  
  • PAVE provides Sample Letters to Support Families in Their Advocacy, including a Sample Letter to Request an Evaluation. 

Introduction

When a student is struggling in school and may have a disability, families have the right to ask for an evaluation to better understand their child’s needs. This process helps identify learning challenges and guides decisions about supports that can make school more accessible. Starting with a referral for evaluation, families and schools can work together to identify what a student needs to thrive with individually tailored school-based supports. 

Anyone with knowledge of a student’s learning or developmental needs can make a referral for special education evaluation. This includes parents, guardians, family members, teachers, school staff, counselors, early learning providers, and even community members. Referrals can be made for students ages 3–22 who are suspected of having a disability and may need special education services.

School districts are required to actively seek out and evaluate students who may need support. This responsibility is called Child Find, and it is part of the federal Individuals with Disabilities Education Act (IDEA).

Removing the Barriers to Evaluation

Schools must support individuals who are unable to write by helping them complete the referral in another format. This includes offering assistance in drafting the referral or providing alternative methods such as verbal requests or translated forms. The goal is to remove barriers that might prevent a family from initiating the evaluation process.

Schools are legally required to provide evaluation materials and meeting support in the family’s native language or preferred mode of communication. This includes oral translation, sign language interpretation, Braille, or other formats when written language is not used. During the evaluation process, districts must ensure that parents understand all documents and decisions, and must document that translation or interpretation was provided. For example, prior written notice must be translated orally or by other means, and the district must keep written evidence that the parent understood the content. These protections are outlined in the statewide Procedural Safeguards developed by the Office of Superintendent of Public Instruction (OSPI).

Appropriate Evaluation

The IDEA requires schools to use “technically sound” instruments in evaluation. Generally, that means the tests are evidence-based as valid and reliable, and the school recruits qualified personnel to administer the tests. A single assessment tool, such as an Intelligence Quotient (IQ) test, is not enough to determine eligibility for special education services. Instead, schools must conduct a comprehensive, unbiased evaluation using multiple methods to understand a student’s unique educational needs. This process involves a team approach and includes parents or guardians as active participants. The results help guide decisions about how best to support the student’s learning.

Not every student who has a disability and receives an evaluation will qualify for an IEP. The school district’s evaluation asks 3 primary questions in each area of learning that is evaluated:

  1. Does the student have a disability?
  2. Does the disability adversely impact education?
  3. Does the student need Specially Designed Instruction (SDI)?

If the answer to all three questions is Yes, the student qualifies for an IEP.

Keep in mind that a student does not need to meet all three criteria to be evaluated. Under the Child Find Mandate of IDEA, the school district must evaluate a child if there is a known or suspected disability that may have significant impact on learning. 

From Evaluation Results to IEP

Information, or data, collected during the evaluation is essential for developing the IEP. One of the most important outcomes of the evaluation is determining whether the student needs Specially Designed Instruction (SDI), which is the “special” in special education. The evaluation determines whether SDI is needed to help a student overcome barriers and access learning in ways that work best for them.

SDI is tailored instruction that helps a student overcome barriers caused by a disability and access learning in ways that work best for them. This may include changes in content, teaching strategies, or learning environments. For example, SDI might involve breaking tasks into smaller steps, using visual supports, or providing extra time for assignments. These supports are designed to help the student make meaningful progress in school.

Understanding how SDI works can help families participate more fully in IEP development. Asking questions about SDI can lead to more effective planning and collaboration. For example:

  • What specific instruction will be provided?
  • Who will deliver it?
  • How will progress be measured?

These questions can guide meaningful conversations during IEP meetings and ensure that the IEP reflects the student’s strengths, challenges, and learning needs.

To learn more, watch PAVE’s three-part video series: Student Rights, IEP, Section 504, and More.

In What Areas Can a Student Be Evaluated?

When a parent signs consent for an evaluation, looking through the list of areas the school intends to evaluate is important to ensure that all concerning areas are included. Families can request additional areas to include in the evaluation, including a Functional Behavioral Assessment, for example.

Keep in mind that strengths are measured alongside challenges and can provide important details. An IEP should always include statements about what the student does well, and the IEP team uses this information to reinforce and build on strengths throughout the program.

Below is an infographic showing skill areas that are commonly evaluated:

Areas of evaluation

Download In What Areas Can a Student Be Evaluated?:
English | Chinese (Simplified) 中文 (Zhōngwén) | Korean 한국어 (Hangugeo) | Russian Русский (Russkiy) | Somali Soomaali | Spanish Español | Tagalog | Ukrainian українська | Vietnamese Tiếng Việt

Eligibility Categories for Special Education

Once a student’s evaluation confirms a disability that impacts learning, the next step is to determine whether the disability fits one of 14 federally recognized categories. These categories are outlined in Washington’s Administrative Code (WAC 392-172A-01035):

  • Autism
  • Emotional Disturbance
  • Multiple Disabilities
  • Specific Learning Disability
  • Visual Impairment / Blindness
  • Deaf-Blindness
  • Hearing Impairment
  • Orthopedic Impairment
  • Speech/Language Impairment
  • Developmental Delay (ages 0-8)
  • Deafness
  • Intellectual Disability
  • Other Health Impairment
  • Traumatic Brain Injury

These categories are intentionally broad to reflect the diverse ways disabilities can affect learning. The IEP team may discuss which category best fits the student’s unique situation. While a medical diagnosis can help inform the process, eligibility is determined by how the disability impacts the student’s education. This impact can be assessed with or without a formal diagnosis.

There is no such thing as a “behavior IEP” or an “academic IEP.” Once a student qualifies, the school is responsible for addressing all identified areas of need. The IEP is personalized to include programming, services, and placement designed to support the whole child.

In Washington State, children through age 9 may be eligible for services under the category of Developmental Delay. Full definitions for each category are available in WAC 392-172A-01035 and are also reproduced in this PAVE article: Washington Special Education Categories.

Timeline of Evaluation and Development of an IEP

The school follows set timelines for the evaluation process:

  • The school has 25 school days to respond to a written referral.
  • If they agree to evaluate the student, they have 35 school days from the date the family signs consent to complete the evaluation and provide results to the family.
  • After that, the district must wait at least 5 school days, but no more than 40 school days from consent, to hold the eligibility determination meeting.
  • If the student is found eligible, an IEP must be developed within 30 calendar days of that eligibility determination meeting.

Track your student’s progress from the point of referral for evaluation to the development of the IEP with the infographic below.

Timeline of Evaluation and development of an individualized education program (IEP)

Download the IEP Referral and Evaluation Timeline:
English

Sample Letter to Request an Evaluation

Washington law requires that referrals for special education evaluation be made in writing. If a verbal request was previously denied, start again with a formal written letter sent by email, certified mail, or delivered in person.

OSPI provides a downloadable referral form on its Making a Referral for Special Education page. The person making the referral can use this form or any other written format that clearly communicates the request to evaluate.

Address the referral to the district special education director or program coordinator, and include an administrator at the student’s school. Be sure to include the student’s full name and birthdate, a clear statement requesting evaluation in all areas of suspected disability, and specific concerns. Supporting documents or letters from doctors, therapists or other providers may be attached. Include complete contact information and a statement that the parent or guardian is prepared to sign consent for the evaluation to begin.

Download the Sample Letter to Request an Evaluation:
English | Chinese (Simplified) 中文 (Zhōngwén) | Korean 한국어 (Hangugeo) | Russian Русский (Russkiy) | Somali Soomaali | Spanish Español | Tagalog | Ukrainian українська | Vietnamese Tiếng Việt

Options When Families and Schools Disagree

Families can ask school staff to explain their decisions in writing. If a parent or guardian disagrees with something the school decides, they have rights to informal and formal dispute resolution options that are protected by the IDEA. Schools must provide a document called procedural safeguards, which outlines these options and explains the rights of both students and families. PAVE continues this topic in an article: Evaluations Part 2: Next Steps if the School Says ‘No.’

Section 504 Protections

Section 504 of the Rehabilitation Act of 1973 is a federal civil rights law that helps protect students with disabilities from discrimination in schools that receive federal funding. It applies to individuals whose disabilities significantly affect major life activities—such as learning, breathing, walking, or concentrating. Because the law is broadly written, it can apply to a wide range of conditions and circumstances.

Students who receive services through an IEP also benefit from protections under Section 504, which are built into the IEP process. In some cases, students who don’t qualify for an IEP may still be eligible for support through a Section 504 Plan.

Protections against bullying and discriminatory discipline are aspects of Section 504. PAVE provides articles about Bullying at School: Resources and the Rights of Students with Special needs and What Parents Need to Know when Disability Impacts Behavior and Discipline at School.

Learn More

PAVE provides downloadable toolkits ready for you, including Where to Begin When a Student Needs Help. For the full list of toolkits, type “toolkit” in the search bar at the top of this page.

Click on Get Support at the top of this page to submit a Support Request and receive individually tailored support, training, information, and resources.

Online – P2P Lunch & Learn: Menstrual Hygiene for Girls with I/DD

July 16 @ 12:00 pm – 1:00 pm PDT

REGISTER Join Pierce County Parent to Parent (P2P) for a free online Lunch & Learn presented by Teddy Kemirembe, MSW, Founder of Bella Smiles for DD.

This informative session will introduce Bella Smiles for DD’s Strong Girls, Healthy Cycles program and explore practical approaches to menstrual health and hygiene for girls with intellectual and developmental disabilities (I/DD).

Learn how families can support confidence, independence, and healthy self-care habits while navigating menstrual health in a safe, supportive, and empowering environment. REGISTER

Free

Related Events

Online – Quick Connect Virtual Clinics

June 20 @ 11:00 am – 12:00 pm PDT

504s, IEP & school support services

What is Quick Connect?
Join us for a 60 minute virtual clinic with PAVE Parent Resource Coordinators (PRC)

How it works:

  • Join the Zoom session on the scheduled date.

Choose your path:

  • Stay in the main room for general Q&A

Or

  • Enter a private 1:1 breakout with a PAVE team member
  • 1:1 sessions last 15 minutes
  • Need more time? Schedule a follow-up with the same PAVE team member!

Two meeting options each month;

  • First Tuesday of each month from 11:30 am – 12:30 pm
  • Third Saturday of each month from 11:00 am – 12:00 pm
Register in advance!

Free

Related Events

Online – Quick Connect Virtual Clinics

June 2 @ 11:30 am – 12:30 pm PDT

504s, IEP & school support services

What is Quick Connect?
Join us for a 60 minute virtual clinic with PAVE Parent Resource Coordinators (PRC)

How it works:

  • Join the Zoom session on the scheduled date.

Choose your path:

  • Stay in the main room for general Q&A

Or

  • Enter a private 1:1 breakout with a PAVE team member
  • 1:1 sessions last 15 minutes
  • Need more time? Schedule a follow-up with the same PAVE team member!

Two meeting options each month;

  • First Tuesday of each month from 11:30 am – 12:30 pm
  • Third Saturday of each month from 11:00 am – 12:00 pm
Register in advance!
Free

Related Events

 I Have to Sign What? Healthcare in Transition

Posted on by Nicol Walsh

When young people turn 18, a lot happens. For instance, in Washington State, 18 is the age when a person legally becomes an adult and must handle tasks and make decisions that used to be made for them by adults.

Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.

For example, at age 18, a young adult is responsible for signing official paperwork to authorize procedures or therapies and to pay for co-pays. They must sign documents stating who can look at their medical records, speak with their doctors, or attend an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability. In this video, young adults living with various disabilities and medical conditions share their journeys through the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!

Learning these skills isn’t something that happens the minute you turn 18. It takes practice to learn how to ask questions at the doctor’s office, to remember to ask about medications, to bring your insurance card. If you are a youth or young adult, those are things you can start early. If you are a caregiver or parent, begin giving your young adult or child questions to ask the doctor when they go in for well-child checks at age 12 or 13. Start talking with them about the conditions they may have and answer any questions they have honestly. If they are aware of why their body is doing what it is doing they can better manage their needs and ask for help when they need it. Help them learn to manage medicine with medicine reminder apps and pill containers. These kinds of things not only set them up for success when they are 18 at the doctor’s office, but also helps them advocate better for what they need in school and the community.

Here are some great sites that provide comprehensive step by step guidance to this process. See what fits best for yourself as a young adult;  parents and guardians can think about what fits your family from their point of view.

  • Got Transition has great tools and videos for youth, families, and providers. Young adults and families developed it, so it is peer-based.
  • Charting the LifeCourse™ was created by families to help individuals and families of all abilities and all ages develop a vision for a good life, including their health care. 
  • The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD), ages 12-26, to direct their own transition from pediatric to adult care, with no reduction in quality of care and no gaps in services. 

Including Healthcare Needs and Goals in the Transition Plan

Healthcare transition is often left out of the transition process and left to parents and students to do themselves. Parents, students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work, and living on their own. Parents and students can ask that this be a part of the transition plan and can use the resources listed above in the planning process.

Including Health Considerations in the Transition Plan

Click to access Including-Health-Considerations-in-the-Transition-Plan.pdf

5 Tips for Success in Healthcare Transition

Insurance in Healthcare Transition

Posted on by Nicol Walsh

Healthcare transition, like all other aspects of transitioning to adult community living, employment, and services, can be difficult. However, if teenagers and families plan ahead for the healthcare changes that occur when a child becomes an adult, things can go more smoothly and successfully. Here are some resources and information to help make the transition to adult care effectively and give young adults more confidence and self-assurance.

There are two main components for individuals transitioning from pediatric (children) to adult health care:

  • New medical providers and systems, including changes in insurance
  • The young adult’s new responsibility of being in charge of their own health care

Health Insurance and Providers

Whether an individual is on Medicaid, Medicare, or private health insurance, eligibility, costs, and covered services may change.

Washington’s Medicaid option, Apple Health, has different financial requirements for adults than it does for minors. The type of Medicaid a youth has before age 18 may change depending on the source of their income or benefits when they turn 18.

If the disability is significant, a student or young person may be on classic Medicaid. When they turn 18, they must contact the managed care organization (MCO) that is their current healthcare provider (Molina, Community Healthcare, Well Point, etc.) and:

  • Confirm who their current healthcare provider is
  • Confirm their own current address

They must do this every 12 months.

If the youth is not

  • on Supplemental Security Income (SSI),
  • receiving Developmental Disability (DDA/DDCS) services,
  • or receiving state benefits for the blind such as Aging, Blind, or Disabled (ABD) Cash Assistance or State Supplementary Payment (SSP),

then they may be on Medicaid through the healthcare exchange, the Washington Health Plan Finder.

At 18, Washington youth are required to apply for or renew Apple Health by going to the Health Plan Finder website.  Even if an individual is not eligible for fully subsidized (paid) healthcare, the Health Plan Finder can reveal some low-priced options. 

Young adults who are on their parents’ private insurance will be covered under their parents’ plan until they are 26, unless the young adult works and are covered through an employer-based plan. When they turn 26, if they are not working and are not covered by SSI/SSDI, DDA/DDCS services, or any other disability based supports, they will need to apply for their own health insurance. Again, the Health Plan Finder can help you find affordable options, including Apple Health.

For individuals under 65 who are receiving Medicare due to a disability, insurance should not change due to the transition to adulthood. It is important to know which doctors can treat an individual’s conditions and whether an insurance plan includes those doctors. To find out, call the MCO/health provider’s helpline or view their website to find out whether those doctors are included in their insurance plan. The doctor’s office will also give information on which plans they accept and which ones they don’t.

Taking on Responsibility for Health Care and Decisions

Healthcare is just one of many new responsibilities that young people take on as they become adults.  Parents can avoid overwhelming a teen with new obligations, by beginning with giving younger teens options and increasing tasks to help them adapt to this change. There are several resources for families and youth to use in this transition:

  • Family to Family has a youth-written curriculum about Transitioning to Adult Doctors to help teens start their medical transition journeys.
  • Charting the LifeCourse™ was created by families to help individuals and families of all abilities and all ages develop a vision for a good life, including their health care.
  • Got Transition is a comprehensive website about the transition to adult health care, with quizzes, FAQs, and timelines to make it easier to understand.
  • The Center for Transition to Adult Health Care for Youth with Disabilities is a national health care transition resource center. The goal of the center is to empower youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to direct their own transition from pediatric to adult care with no reduction in quality of care and no gaps in service.

Beyond these resources, the most useful resource are young adults themselves. Whether you are a parent/caregiver or a transitioning individual, it’s important to recognize that lived experience provides knowledge, even in a new situation. Parents, caregivers, and young adults have knowledge of medical needs that may not be in a chart. They know about the emotional or behavioral challenges a young person has. They know the youths’ strengths, areas for growth, other important things only an individual and their family know.

Write out what you feel is most important in your health care journey over the next 5 years. What do you need to know from doctors? What do you need to know about school and work? What do you need to know about your condition? Be curious and remember what you have already done to take care of yourself. Ask your parents and caregivers about what they see as important over the next few years. Take the time to explore, then start the transition journey to adult care with an idea of what you would like.

Another group to consult are your current medical providers and specialists. They have helped many other teens transition to adult healthcare, and they are a part of developing the care plan, a critical resource for transitioning to an unfamiliar doctor or clinic when a young adult may have complex care needs. Doctors’ office staff are also used to dealing with these issues and may have some good planning advice for families. Lastly, advice from families who have already helped a child transition to adult care can know what to do and what not to do!  Parent-to-Parent can match parents up with families who have already gone through such transitions with those who seek their knowledge and experience. Informing Families has some good basic resources on its website for getting started.

5 Tips for Success in Healthcare Transition

Including Health Considerations in the Transition Plan

Parents, Students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work and living on their own. PAVE has made a fillable form that you can download when starting to think about this area in transition.

Including Health Considerations in the Transition Plan

Download the document Including Health Considerations in the Transition Plan

Autism Spectrum Disorder: Information and Resources for Families

Posted on by Nicol Walsh

Autism spectrum disorder can affect how a person talks, learns, and relates to others, and every individual is different. Families can learn about early signs, get help with evaluations, and find supports for school and daily life. With the right resources and support, individuals with autism can learn, grow, and thrive in their community.

A Brief Overview

  • Autism Spectrum Disorder (ASD) is a spectrum condition with varied signs and symptoms. It involves challenges in multiple areas, including social skills, emotional regulation, communication, and behavior.
  • ASD can appear differently from one person to the next, and as a child develops from infancy through adulthood. Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish, and other languages.
  • Parents of infants and toddlers aged 0-3 with developmental concerns may benefit from the services provided by the Early Support for Infants and Toddlers (ESIT) program, which provides specialized services and support that are crucial during the early and highly formative years of a child’s life.
  • Students with ASD may qualify for school-based services through an Individualized Education Program (IEP) if their disability significantly impacts educational access. These services are determined through evaluations that can include various related conditions. A medical diagnosis is not required for school-based evaluations or interventions.
  • The Developmental Disabilities Administration (DDA/DDCS) accepts diagnoses from Autism Centers of Excellence (COEs) as a component of DDA services eligibility, except for naturopathic providers.
  • Connecting with other families to share and learn from experiences is invaluable, and there is a wealth of resources available to assist those seeking support and information in Washington State. Parent to Parent (P2P) programs across various counties provide free training and support, with support groups tailored to cultural and linguistic communities such as Spanish-speaking and Black & African American families.
  • PAVE provides support to families navigating various healthcare systems related to disability. Fill out a Support Request for direct support and click on the “Health and Wellness” link to get connected with individual support.

Autism, Neurodiversity, and Families

Parents of individuals with autism have many different experiences when watching their child’s development, navigating school years and relationships, and building community and belonging. When developmental milestones aren’t met in typical timeframes, families may seek a diagnosis, medical interventions, and/or support from school.

CDC numbers show that 1 in 36 children have ASD, and 2.8% of 8-year-old children have a diagnosis of ASD. According to Washington’s Department of Health (DOH), between 23,000-48,000 of the state’s children have some form of diagnosed ASD.

April is Autism Acceptance Month, providing an opportunity to think about challenges and celebrations of individuals who experience neurodiversity.  Neurodiversity is a word used to capture the range of differences in the ways that humans function and experience the world. Much of the Autistic community rallies to honor neurodiversity, uplift the voices of self-advocates, and forward the movement of civil and social rights.

To promote dignity, neurodiversity, and empowerment, many autistic self-advocates prefer identity-first language, such as “autistic person” instead of person-first language like “person with autism.” This approach recognizes autism as an integral and inseparable part of an individual’s identity.

What is Autism Spectrum Disorder (ASD)?

Autism Spectrum Disorder (ASD) is referred to as a “spectrum”, which means that signs and symptoms vary among individuals. The Centers for Disease Control and Prevention (CDC) defines Autism Spectrum Disorder (ASD) as “a developmental disability that can cause significant social, communication and behavioral challenges.

“There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.”

A diagnosis of ASD includes several conditions that were formerly diagnosed separately, including autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. A short YouTube video by Osmosis.org provides an overview of ASD.

Autism Indicators and Markers Across the Lifespan

People with ASD may struggle with social, emotional, and communication skills. They might repeat certain behaviors or have rigid ideas about routines. Indicators of ASD often begin during early childhood and typically last throughout life. Professor and autism self-advocate, Dr. Stephen Shore said, “If you’ve met one person with autism, you’ve met one person with autism.” ASD can appear differently from one person to the next, and as a child develops from infancy through adulthood. There are services and supports available at each stage of development and life.

Early Childhood Indicators and Supports

The American Academy of Pediatrics recommends that all children have a developmental screening at every well-child check-up, with an autism screening at 18 months of age and again between ages 2 and 3. To encourage early screening and intervention, the CDC provides developmental milestone trackers for children Birth-5, including a Milestone Tracker App. State-specific information about early screening recommendations and guidance is available from the Washington Department of Health (DOH). Families concerned about a child’s development can call the state’s Family Health Hotline at 1-800-322-2588. This toll-free number offers help in English, Spanish, and other languages.

  • Not pointing at objects, such as an airplane flying overhead, or looking when someone else points
  • Not wanting to be held or cuddled
  • Repeating or echoing words, phrases, or actions

Several state agencies collaborated to publish Early Learning and Development Guidelines. The booklet includes information about what children can do and learn at different stages of development, focused on birth through third grade. A free downloadable version is available in English, Somali, and Spanish on the Washington State Department of Children, Youth & Families (DCYF) website. An English translation is also available on the Office of the Superintendent of Public Instruction (OSPI) Early Learning Resources page.

Parents of infants and toddlers aged 0-3 with developmental concerns may benefit from the services provided by the Early Support for Infants and Toddlers (ESIT) program, which provides specialized services and support that are crucial during the early and highly formative years of a child’s life. Early intervention services through ESIT not only support the child’s immediate developmental needs but also lays a foundation for their future learning and adaptation. ESIT provides the following:

Early Evaluation and Identification: ESIT helps in the early identification of developmental delays or disabilities, including autism, through assessments conducted by a team of professionals. These evaluations focus on key developmental areas such as motor skills, cognition, communication, social interaction, and self-help skills. Early diagnosis is crucial for autism, as it can lead to early intervention, which is shown to improve outcomes.

Services and Supports: Once a child is evaluated and deemed eligible, they receive an Individualized Family Service Plan (IFSP) under Part C of the Individuals with Disabilities Education Act (IDEA). This plan is tailored to meet the unique developmental needs of the child and considers the family’s resources, priorities, and concerns. The IFSP includes detailed information on the child’s current development levels, the specific interventions planned, and the expected outcomes. Through ESIT, children can access a wide range of early intervention services designed to address specific developmental needs associated with ASD.

Family-Centered Approach: The family plays a crucial role in the development and implementation of the IFSP. Family Resource Coordinators (FRCs) assist families in understanding their child’s needs, the available services, and the implementation of the intervention plan. This inclusive approach ensures that the family’s needs and goals are addressed, promoting a supportive environment for the child.

The ESIT website includes videos to guide family caregivers and a collection of Parent Rights and Leadership resources, with multiple language options.

Parents may also contact their local school district for evaluation. Regardless of whether a student is medically diagnosed with ASD, a school district has the affirmative duty to seek out, evaluate and serve—if eligible—any child within its boundaries who has a known or suspected disability condition that may significantly impact access to learning (Child Find Mandate). Child Find applies to IDEA’s Part B IEP services for children ages 3-21 and to IDEA’s Part C early intervention services for children Birth-3. See PAVE’s article about early intervention services for more information.

Supporting a Student with ASD

Children and youth in adolescence may demonstrate the following characteristics of ASD:

  • Avoiding eye contact or making excessive eye contact
  • Uncertainty in understanding what facial expressions or tones of voice mean
  • Not understanding sarcasm, figures of speech, or metaphors

Autism is an eligibility category for a student to receive school-based services through an Individualized Education Program (IEP). The categories are defined by the federal Individuals with Disabilities Education Act (IDEA). State law further defines the categories and criteria for intervention.

The Washington Administrative Code that describes IEP eligibility (WAC 392-172A-01035) describes Autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a student’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

Schools have specific evaluation tools to determine how the features of an autistic disorder might impact school. Evaluations can also determine eligibility based on health impairments (for example, ADHD), speech delays, learning disabilities, or emotional behavioral conditions that might co-occur with autism. See PAVE’s article about evaluation process for more information, including a list of all IDEA eligibility categories.

In short, a student is eligible for an Individualized Education Program (IEP) if the evaluation determines:

  • The student has a disability
  • The disability significantly impacts access to education
  • The student requires Specially Designed Instruction (SDI) and/or Related Services

Not every student with ASD is eligible for school-based services through an IEP. Some may have “major life activity” impacts to qualify for a Section 504 Plan, which can accommodate a student within general education. Section 504 provides anti-discrimination protections as part of the Rehabilitation Act of 1973. Keep in mind that students with IEPs have disability-related protections from IDEA and Section 504. Additional protections are part of the Americans with Disabilities Act (ADA). See PAVE’s article about disability history for additional information.

A diagnosis is not required to provide special education or related services. If the school district requires a comprehensive medical evaluation, they may request permission from the parent to have the child evaluated at the district’s expense (WAC 392-172A-03020).

Getting Supports: Where to Start

Families whose children experience autism may need services beyond school. Speech, Occupational Therapy, Applied Behavioral Analysis (ABA) therapies, and other services may be available through insurance if they are determined to be medically necessary. The state Health Care Authority provides information about ABA resources and how to seek approval from public insurance (Apple Health) for specific therapies. HCA also hosts a list of Contracted ABA providers in Washington State.

Diagnosing ASD can be difficult since it can appear differently from one person to another, and indicators change depending on the chronological and developmental age of the individual. Doctors look at the person’s behavior and development to make a diagnosis. The diagnostic process usually takes a while, lasting years in some cases. In addition to working through insurance and health systems, you may encounter barriers when identifying providers who can diagnose within the age range of the individual.

Medical diagnoses in Washington are provided by Autism Centers of Excellence (COEs). An Autism COE may be a health care provider, medical practice, psychology practice, or multidisciplinary assessment team that has completed a certification training authorized by the state’s Health Care Authority (HCA). Physicians, nurse practitioners, and pediatric primary care naturopaths are eligible to apply for COE training and endorsement. The Developmental Disabilities Administration (DDA) accepts diagnoses from COEs as a component of DDA services eligibility, except for naturopathic providers.

Locate screening and diagnostic services in your location at ParentHelp123. If insurance doesn’t cover the full cost of diagnosis, check with the diagnostician to identify sliding scale or other payment options.

PAVE provides support to families navigating various healthcare systems related to disability. Fill out a Support Request for direct support and click on the “Health and Wellness” link to be directed with individual support. 

Building Community Connections

Connecting with other families to share and learn from experiences is invaluable, and there is a wealth of resources available to assist those seeking support and information in Washington State. These resources include various programs and organizations tailored to meet specific needs, with some services focusing on race, cultural identity, and language. By tapping into these resources, families and individuals can find not only support but also a sense of belonging within a community that understands their unique challenges and perspectives.

Parent to Parent (P2P) of Pierce County, a program of PAVE, partners with Pierce County Human Services and The Arc of Washington State to provide No Cost training and support. PAVE’s Pierce “Parent 2 Parent Support Groups” offers a nurturing space for caregivers to connect, share experiences, and find guidance. Support groups specific to a cultural and linguistic community (Spanish-speaking, and Black & African American families) will be supported by a PAVE facilitator that is a cultural/linguistic match for the families served.

Parent to Parent (P2P) programs across various counties provide free training and support, with support groups tailored to cultural and linguistic communities such as Spanish-speaking and Black & African American families. P2P of Yakima, Walla Walla, Chelan/Douglas, Benton/Franklin, Skagit, Snohomish, Whatcom, Grays Harbor/Pacific, Clark, Klickitat, Lewis, Skamania, and Grant counties provide Spanish-speaking support, events, and resources. P2P King County supports Spanish-speaking and African American families. P2P of Snohomish also provides Arabic and Russian parent support groups.

Informing Families provides navigational supports for all ages, including referral to culturally responsive programs and services, such as Vietnamese Family Autism Advisory Board (VFAAB), Odessa Brown Children’s Clinic (OBCC), and Families of Color Seattle (FOCS).

The South Sound Autism Partnership is a collaborative network dedicated to raising awareness, acceptance, and advocacy for autism. SSAP aims to support and enact positive change within the community through monthly online meetings. Recordings of guest speakers at previous meetings and meeting notes are available on the SSAP website.

Learn More

The downloadable Autism Guidebook for Washington State, published by a dedicated Autism Task Force in collaboration with DOH and other agencies, offers a comprehensive resource for families, educators, medical professionals, and care providers. It features a detailed Autism Lifespan Resource Directory, diagnostic and special education eligibility criteria, and recommended intervention.

Another guidebook, the Pierce County Parent Coalition (PC2) Resource Guide, contains clickable and searchable links to services throughout the state.

The University of Washington Autism Center provides a manageable place to begin with a small collection of resource categories that include online tools, early recognition, organization, and neurodiversity. Within its online tools, UW maintains lists of organizations that provide advocacy, assessments, intervention services, and research/training. UW Autism Center’s Autism Spectrum 360 (AS360) helps autistic people, families, and providers easily find services, learn about autism across the lifespan, and connect with community resources, such as the recorded webinar “Could I Be Autistic?”

Washington Autism Alliance (WAA) provides free support for families navigating insurance and medical systems and can help with DDA applications. WAA’s website requests families to join the agency by providing basic information before they navigate to request an intake. Note that while basic services are free from WAA, the agency may charge a fee based on a sliding scale if families request legal services from an attorney.

The Autistic Self Advocacy Network (ASAN) shares resources by autistic individuals with lived experience for people who have autism spectrum disorders, including a welcome kit for newly diagnosed individuals: Welcome to the Autistic Community! The DOH website links to family supports and services for individuals of all ages, including links to Regional Genetic Clinics.

Asking for Help is a Selfless Act for Family Caregivers

Posted on by Barb Koumjian

Many family caregivers find it difficult to ask for help in taking care of their loved ones. Whether it’s because they don’t want to burden others, not wanting to admit they need help, or feel that it’s “something that family does”, caregivers often don’t ask for help, or they reject help when it is offered. Despite the best intentions behind this, it’s not good for the caregiver or the person they care for. Overburdened and overwhelmed caregivers are not as effective at caregiving. Their loved one, who can tell that their caregiver is exhausted, may feel frustrated and guilty. Getting assistance from outside sources is helpful for everyone. Use these ideas to begin!

Start small: Ease into taking caregiving breaks (respite breaks). If a friend or family member offers to stay with your loved one, make the first respite break short. Have them take over care while you take a shower, run an errand, or take a walk. These short breaks will allow your friend or family member to get a feel for caregiving and allow you and the person you care for to adjust. This easing into respite can be especially important if the person you care for is an individual with intellectual or developmental disabilities or a person with dementia who has trouble adjusting to change.

Think about the interests and strengths of your friends and family. Everyone has strengths and weaknesses, things they enjoy and things they dislike. Keep these in mind when using a family member or friend to help with caregiving. Allow your cousin who loves to cook to make a meal and your neighbor who loves to drive around town take your loved one to appointments. If a potential caregiver and your loved one have something in common that they enjoy, all the better.

Be prepared: Before anyone starts helping, put together a full sheet of information on the person you care for. This should include medications, schedule, likes and dislikes, and emergency contact information. Include what you want the caregiver to do, like help with bathing, cooking, or exercises.

Timing is everything: Ask for help in respite care during a time that is convenient for the potential respite caregiver. This means contacting them at a time when you know they will not be busy and asking their help at times when they are not working or are busy with other responsibilities. If you don’t know their specific schedule, ask when they might be free to help.

Be honest: When you ask for caregiving help, honesty is the best policy. Explain to the potential caregiver why you need a break, and why you think they would be a great person to help fill that gap. Also be up front about your concerns, as they will help the potential caregiver decide if they feel comfortable helping.

Accept the word “no”: Not everyone is comfortable being a caregiver, even if they have been one in the past. People’s lives are busy, they have plenty of other stress, and sometimes they have private issues that would keep them from being a respite caregiver. This doesn’t mean that they care about you or your loved one any less; it just means that they are not mentally or physically able to help in this manner. You can always ask for other forms of help, like having them run errands for you when you are too busy or bringing a meal occasionally. Allowing someone to say no to caregiving but still help when needed is valuable to everyone involved.

Plan ahead: You never know when you will need emergency respite, so having a couple of people on standby who have some experience in caregiving for your loved one is essential. Read more about planning for emergency respite in our article “Do You Have an Emergency Respite Plan?”

Share the care: Just as no single person should have to be completely responsible for another person’s care, so there should be more than one respite caregiver. Think critically about your own friends and family who would be willing to help, along with the friends and family of the person who needs care, some of whom you may not know as well. They may wish to help, but don’t know how to ask. Having several people help from time to time means none of them get burnt out, and your loved one gets to see an array of friendly faces.

What about reaching beyond family and immediate friends to the groups in which you have been active, such as your exercise class members, your faith community, your parent group, etc. You might say something like “I haven’t been to book group in a while because I’ve been caring for my father, and I’m badly in need of a break. Do you think you might be able to come over and read to Dad for an hour next week?”

Think about professional respite care: There are a variety of ways to afford professional services for the person receiving care. Explore these resources from PAVE:

Creating Comfortable Holiday Spaces

Posted on by Nicol Walsh

Navigating social interactions can be particularly challenging for individuals with disabilities, especially during the holiday season when gatherings are frequent and often overwhelming. While some people enjoy socializing, they may prefer calm and predictable environments where they can engage in structured activities. Understanding their unique needs and preferences is crucial for creating a supportive and inclusive atmosphere that allows them to participate comfortably and meaningfully.  

A Brief Overview  

  • This is part of a series on the topic of creating joyful holidays for family members, which began in My Family’s Sensory and Adaptive Needs for the Holidays and continues in Sensory-Friendly Holiday Tips  and Giving the Gift of Sensory-Regulation; Supporting a Happy Holiday Season for All.
  • Social interactions can be particularly challenging during the holiday season due to frequent and overwhelming gatherings.  
  • People with disabilities who enjoy socializing may prefer calm, predictable settings.  
  • Structured social activities provide a comfortable way for individuals to engage with others, as they offer clear rules and a shared experience.  
  • Family gatherings can be stressful due to interactions with relatives they don’t see often, leading to feelings of overwhelm.  
  • It’s crucial to respect the boundaries of individuals with disabilities or health care needs, allowing them to make their own choices about social interactions and providing opportunities for breaks to avoid overstimulation.  
  • Understanding and respecting social preferences and boundaries, especially during the holiday season, helps ensure people feel safe, respected, and included.  

Comfort In Calm Familiarity

People with disabilities or special health care needs who enjoy socializing may prefer calm, predictable gatherings. They might like sitting with a friend and playing video games, quietly working on a puzzle together, or playing board games. When faced with a loud, busy family gathering, individuals may withdraw or seek out one person they enjoy chatting with -someone who genuinely respects and understands their accommodation needs, and with whom they can happily spend time with. This person feels safe to them. However, it’s important to recognize that their safe person might need a break too, so having multiple people that they feel safe with can be beneficial.  

Incorporating Structured Activities

For many individuals, having structured social activities like board games or group video games can provide a comfortable way to engage with others. Social rules and nuances can often be confusing, making unstructured mingling feel overwhelming and unmanageable. Structured activities offer a more supportive environment for social interaction with the rules clearly identified and a shared experience to drive conversation. Baking together, wrapping presents, and completing holiday crafts are all shared experiences that have clear instructions and goals. These activities not only make socializing more manageable but also add a festive touch to holiday gatherings.  

Overstimulation With Unfamiliar Relatives

Even meeting with beloved family members can feel strange and stressful. Talking to relatives they don’t see often can be difficult for people as they may feel that they must work out how to talk and act around people that feel unfamiliar. This can be overwhelming since they have to understand and respond to different social cues and expectations that may not be easy or comfortable for them.  

To help ease this stress, consider preparing in advance by discussing who will be at the gathering and what to expect. Shared interests can be a great way to connect with others and make conversations more engaging. Tell or remind your loved one of interests they have in common with relatives they don’t see as often to help start conversations. Socializing can be challenging, so it’s important to be patient and provide support without pressure.  

Supporting Boundaries and Choice

Even with careful planning and maintaining traditions, the holiday season can still be overwhelming. Back-to-back events can be exhausting for anyone, but they can quickly become overstimulating for loved ones with disabilities, health care needs, and/or neurodivergence. Seeing new people or people they only see once a year, having to navigate complex social networks, and often trying to hide their neurodivergent traits to fit in can be very draining. While it is important to encourage your loved one to engage, it’s also critical to respect their boundaries and teach them how to have agency. Agency refers to their ability to make their own choices and decisions about social interactions, ensuring they feel empowered and in control. Allowing them to sit out some holiday parties for the sake of their own wellbeing can be a gift of emotional recharge, ensuring they don’t come out of the season completely exhausted.  

Conclusion

Recognizing and respecting the social preferences and boundaries of individuals with disabilities, health care needs, and/or neurodivergence is essential, especially during the busy holiday season. Providing structured activities and allowing breaks can help them manage the stress and overstimulation that often accompany large gatherings. This can include being aware of touch sensitivities, especially when consent to touch can’t be communicated or understood; preparation is critical. By fostering an environment of understanding and support, we can ensure that individuals feel safe, respected, and included, ultimately enhancing their social experiences and overall well-being. PAVE also has an article that gives more ideas when dealing with touch sensitivities, visit Sensory-Friendly Holiday Tips for more information.

Additional Information:

My Family’s Sensory and Adaptive Needs for the Holidays

Posted on by Nicol Walsh

The holidays are a fun and festive time that often includes lots of change in schedules, foods, bright lights, loud unexpected sounds, new people, and lots of heightened emotional situations (i.e. seeing Grandparents, presents, seeing Santa). All of this is often overwhelming and even disorienting, especially for those families or individuals who may have some challenges in navigating change or experience a disability or chronic health condition.

A Brief Overview 

  • This article shares ideas, tips, and resources around family-friendly tweaks that can be added to Holiday activities to reduce stress and overwhelm.
  • This is part of a series on the topic of creating joyful holidays for family members, which began in Sensory-Friendly Holiday Tips, and continues in Creating Comfortable Holiday Spaces and Giving the Gift of Sensory-Regulation; Supporting a Happy Holiday Season for All.
  • How to plan for both the needs of your children with unique needs and siblings to encourage shared enjoyment.
  • How to use planning, clear communication, and providing a sense of control to create an inclusive holiday season. 
  • Understanding, supporting, and celebrating the unique needs of your family bring a sense of belonging and acceptance, allowing everyone to enjoy the festive spirit. 

Holidays and Families

People often see family get-togethers, new food, music, trips to see Santa, or new social situations as the joys of holidays, but for families who have children with a disability and those family members who experience life a little differently, these experiences can often be overwhelming and/or exhausting. This doesn’t mean they dislike the event or holidays; it just requires some preparation to make the season inclusive and enjoyable. 

It’s the age-old question… How to create an enjoyable experience for your child(ren) with a disability, their sibling(s), and still not exhaust yourself. Here are some tips that many families have found helpful:

  • Plan short outings and pack snacks (long activities are often overwhelming and tiring for everyone).
  • Bring headphones, fidgets, or handheld activities for kids with sensory needs and high overwhelm (it keeps them entertained while their siblings get to enjoy the holiday fun).
  • Have a person to be able to stay and to do active things with siblings, and someone to be able to take those who need to de-stress and wind down to their own space for quiet fun.
  • What are some home holiday things that mimic large activities (one of the Nutcrackers streamed on TV with popcorn and other treats, siblings dressed up as Santa and elves for pictures, building a pillow snow fort).
  • Sending family information ahead of time on sensory triggers and needs so that they understand if you need to leave early, don’t join in an activity, or ask to join in differently.

There is so much to do and enjoy during this time but navigating it takes thinking ahead and not trying to do everything.

What did you do as a family last year? What worked? What was most enjoyable? If you have older children, talking with your family before school gets out to plan and map out some special things will help with boredom. Give jobs to make the activities successful so that everyone helps make it inclusive, have the siblings talk about what they think will help, and make things comfortable and what will help. This makes it a family holiday that is not just the parents’ responsibility. Remembering to plan parent time off during the Holidays is an important self-care tool!

Travel

If travel is part of the Holiday plans, a more robust planning process is essential. Medications and an emergency medical information sheet, if your loved one has a chronic condition, can be downloaded and added to their luggage to tuck in with the medications. The linked sheet is from the F2F website care notebook page.  Having an extra 3-day emergency medication supply, if possible, is often recommended to give breathing room while doctors are contacted if there are travel delays. To support your loved one, consider planning travel itineraries that include ample downtime, familiar items for comfort, and clear, detailed schedules to reduce anxiety. Additionally, choosing quieter travel times and less crowded destinations can help create a more manageable experience. If there are food requirements, pack food that will make it through security and purchase beverages before getting on the plane. As mentioned above, having noise-canceling headphones, weighted blankets, games, and activities can also help reduce anxiety. 

Sensory Considerations

Sensory sensitivities can be a challenge for anyone whose body or brain is trying to process not only what is going on around them but also their own body’s challenges.  Age, length of time in an activity, anxiety, excitement, and how many systems in the body are impacted, all contribute to an individual’s capacity to handle the multiple layers of sensory input that come with Holiday activities. Knowing your child’s and family’s tolerance for those “layers” and what the stopping points are is essential to creating a holiday environment that minimizes sensory overload. This can include soft lighting, reduce loud noises, and provide sensory-friendly activities.

The holidays are just like any other time of change for your loved one. Take their unique sensory needs into account and what their routines are for medication, rest, and exercise. How the holiday adaptation will fit with your family’s rhythm and how your children usually interact. Taking the time to create buffer zones, adaptive spaces, creative personal activities, with spots of celebration and joy for all your family can take what could be stressful and overwhelming to manageable and memorable. To find other information and ideas on Holiday activities and adaptations, see the additional articles on the links below.

Additional Information

Sensory-Friendly Holiday Tips

Posted on by Nicol Walsh

 The holidays are full of sensory experiences. Flickering candles, holiday music, the aromas of food cooking, the fur on an unfamiliar dog, and the sounds of happy family members all provide sensory input. What is a source of joy for one person may be a cause for overwhelm to another. When being around a loved one with a disability, anyone can help manage these varying sensory experiences by planning ahead.

A Brief Overview 

  • This is part of a series on the topic of creating joyful holidays for family members, which began in My Family’s Sensory and Adaptive Needs for the Holidays, and continues in Creating Comfortable Holiday Spaces and Giving the Gift of Sensory-Regulation; Supporting a Happy Holiday Season for All.
  • The holidays bring various sensory inputs that can be joyful for some but overwhelming for others. 
  • Plan for managing these sensory experiences with loved ones and their primary caregivers. 
  • Identify or create a calm space where the person can decompress and avoid or reduce overwhelm. 
  • Preferences for specific sensory supports should be discussed beforehand and regularly with the loved one. 
  • Recognize and normalize self-stimulatory behaviors, or “stims”, that do not cause physical harm to themselves or others as coping mechanisms for managing sensory input and stress. 
  • Plan for touch-sensitive individuals by setting boundaries, providing scripts for addressing unwanted touch, and having an escape plan. 
  • Foster an inclusive environment by understanding and respecting sensory needs, ensuring clear communication, and seeking feedback from loved ones. 

A Calm Space

Identifying or creating a space where someone is overwhelmed can take a break and still have fun eases the intensity and allows your loved one to decompress. The “veg-out room” usually creates itself, when people go there to relax and watch TV marathons while their stomachs settle after a big meal. By dimming the lights and keeping things quiet in this space, you can quickly and easily build a calming environment for overwhelmed or overstimulated family members to retreat, relax, and rejoin social activities when it is right for them. 

Sensory Systems and Preferences

To reduce the potential for being overwhelmed, your loved one may need to wear earbuds or headphones during social periods or other activities. Similarly, weighted clothing or objects (like blankets or stuffed toys) may provide a sense of comfort and security. Sensory supports are not one-size-fits-all, so talk with your loved one about their preferences. If you notice their preferences related to a specific sensory system, they may be interested in exploring other ways to meet their sensory needs at a later time. PAVE provides a downloadable introducing to The Sensory Systems and How to Meet Their Needs in the article, Giving the Gift of Sensory Regulation, Supporting a Happy Holiday Season for All. Resist the urge to introduce new sensory supports without input from your loved one with a disability and/or health care need, especially during the holidays when there are already many unfamiliar experiences to navigate. 

Normalizing Self-Stimulation 

Many people with disabilities do specific repetitive behaviors to manage sensory input, reduce anxiety, or express themselves. These self-stimulatory behaviors, or “stims”, are ways they’ve learned intuitively to comfort themselves, cope in times of stress, and even express joy.  These “stims” can include rocking, humming, or fiddling with clothes.  Allowing your loved one to discuss and normalize non-harmful stimming helps to create a more inclusive environment. Thought-out responses can turn an angry retort into a teaching moment, such as, “Everyone has their own way of being and this is her way of pushing through her discomfort to spend this time with us. She is doing her best and we’re glad she’s here!” 

Touch Sensitivities

Unexpected touch can be very upsetting, especially those who are touch sensitive. The joy and excitement of the holidays can often make us forget that not everyone is comfortable with physical touch, including hugs. When consent to touch can’t be communicated or understood, preparation is critical. If your loved one is touch sensitive, there are some things you can do ahead of time to accommodate and support their needs: 

  • Ask before you touch someone, even if they were OK with something like a hug in the past.
  • Remind family and friends of what a touch-sensitive loved one tends to find acceptable touch before you gather.
  • Provide scripts for addressing unwanted touch from children, pets, and adults. For instance, telling a child, “I really don’t want you climbing on my lap, but you can sit next to me on the couch and show me your game.” Communicating to a pet owner, “I’m feeling a little overwhelmed by Cooper trying to put her head in my space. Can you keep her behind the dog gate?”, can help mitigate the overwhelming touch before it happens. 
  • Make sure that there are a few supporters around at times to gently redirect unwelcome touch and serve as a shield. These family members and friends can step in as needed to respectfully uphold boundaries, such as sitting between your loved one and a reaching child or holding an animal to keep it from jumping on them. 
  • Prepare an escape plan for an individual, locating a space they feel safe if they are feeling their boundaries are being crossed, where they can decompress and ask for help.

Conclusion

Creating a supportive holiday environment involves understanding and respecting the sensory needs of loved ones. By providing sensory supports and clear communication about boundaries, you can help them navigate the holiday season with greater comfort and ease. Seeking feedback from their primary caregivers and your loved one and giving them a sense of agency in determining their sensory supports ensures their needs are met effectively. With careful planning and empathy, we can ensure that everyone, regardless of their sensory preferences, can enjoy the holidays and create cherished memories together. 

Additional Information:

Lifespan Respite WA for Professionals: Social Services and Medical

Posted on by Barb Koumjian

What Lifespan Respite WA does:

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

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

Essential Information

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

Important for family caregivers to know

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

Parent to Parent (P2P) Connects Caregivers Statewide for Support

Posted on by Nicol Walsh

Family caregivers for children with disabilities and special healthcare needs may feel isolated or uncertain about where to seek help for their children and themselves. A place for support is Parent to Parent (P2P), a network that connects families to trained parent volunteers who have experienced a similar journey with their own children. In addition to resources and information, parents share personal support and encouragement.

A Brief Overview

Full Article

Families new to the disability world can find preliminary information and request help right away by filling out a short form on a website page designed just for them, hosted by The Arc of Washington: Getting Started/Contact Us…Welcome to our World.

The first P2P program started in Nebraska in 1971. Programs started in Washington State in 1980. A national P2P network was established in 2003 to provide technical support to the statewide networks, with a goal to reach all 50 states. P2P USA provides an historical timeline.

Washington has a network of P2P programs that serve every corner of the state. The Arc provides support to the regional programs and links them to national P2P resources. Families can go to arcwa.org to find a list of P2P coordinators, organized by region and listed under the counties served.

¿Hablas español? Para más información y hacer referidos, llama a su condado abajo: Coordinadores de Enlance Hispano.

Families can request a parent match 

When reaching out to the local P2P network, families can request a “parent match.” P2P leaders will locate a helping parent volunteer who has a similar lived experience and help the families get connected. From there, a supportive relationship can develop, where empathy, hope, and strength are shared.

Helping Parents cannot provide all answers, but they share insight, solidarity, and role modeling. They also share the joy and pride they’ve experienced while watching their child grow and achieve. A phrase commonly shared is: “I know, and I understand.”

In keeping with evidence-based practices promoted by national and state P2P organizations, the helping parent volunteers are training following a specific process and all personal information is kept confidential.

P2P services are free and include:

  • Emotional support for family caregivers of children with special needs
  • Referrals for community resources
  • Information sharing about disabilities and medical conditions
  • Family matching with trained helping parents
  • Social and recreational events
  • Training for parents who would like to become helping parent volunteers
  • Disability awareness and community outreach

Someone to listen and understand

Washington’s statewide P2P is funded by The Arc of Washington State, the Developmental Disabilities Administration (DDA), and the Department of Health/Children with Special Health Care Needs. Individual county programs receive funding from host agencies, county DDA offices, the United Way, local grants, private donations, and more.

The Council for Exceptional Children published a research paper about P2P in 1999. Respondents to a national survey reported the following benefits from participating in P2P:

  • Someone to listen and understand (66 percent)
  • Disability information (63 percent)
  • Care for my child (58 percent
  • Ways to find services (54 percent)

Statewide, various agencies and family-led organizations host local P2P programs. An interactive map of Washington State provides an easy way to locate information in English and Spanish about a P2P program in your area.

Another way to begin is to contact the statewide P2P coordinator, Tracie Hoppis, by sending an email to: parent2parentwa@arcwa.org.

Self-Care is Critical for Caregivers with Unique Challenges

Posted on by Nicol Walsh

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

A Brief Overview

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

Introduction

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

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

Two Feet, One Breath

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

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

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

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

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

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

Connect with others

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

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

Parent-to-Parent Connections

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

Support for Families of Youth Who Are Blind or Low Vision

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

Support for Families of Youth Who Are Deaf or Hard of Hearing

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

Resources for Families Navigating Behavioral Health Challenges

Several family-serving organizations provide support, education, and advocacy for caregivers of children and youth with behavioral health conditions: 

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

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

Get Enough Sleep

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

Move Your Body

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

The Mayo Clinic has this to say about exercise:

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

Be Mindful

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

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

Schedule Time

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

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

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

Seek Temporary Relief

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

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

Download the Emotional Wellness Tips for Caregivers

Emotional Wellness Tips for Family Caregivers

Download this checklist of Emotional Wellness Tips for Caregivers in:
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