Tag: disability

Online – Quick Connect Virtual Clinics

July 7 @ 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:
English | Chinese (Simplified) 中文 (Zhōngwén) | Korean 한국어 (Hangugeo) | Russian Русский (Russkiy) | Spanish Español | Tagalog | Vietnamese Tiếng Việt

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

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

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

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

Connect with others

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

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

Parent-to-Parent Connections

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

Support for Families of Youth Who Are Blind or Low Vision

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

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

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

Resources for Families Navigating Behavioral Health Challenges

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

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

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

Get Enough Sleep

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

Move Your Body

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

The Mayo Clinic has this to say about exercise:

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

Be Mindful

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

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

Schedule Time

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

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

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

Seek Temporary Relief

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

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

Download the Emotional Wellness Tips for Caregivers

Emotional Wellness Tips for Family Caregivers

Download this checklist of Emotional Wellness Tips for Caregivers in:
English | Chinese (Simplified) 中文 (Zhōngwén) | Korean 한국어 (Hangugeo) | Russian Русский (Russkiy) | Somali Soomaali | Spanish Español | Tagalog | Vietnamese Tiếng Việt

Disability History Month Provides Opportunities for Reflection

Posted on by Nicol Walsh

The history of disability rights shows how people with disabilities have worked hard to get equitable access, fair treatment, and meaningful inclusion. Key laws and strong community voices have helped shape education and civil rights. Today, it is as crucial as ever to learn, speak up, and work together to build a more inclusive society.

A Brief Overview

  • October is Disability History and Awareness Month in Washington State (RCW 28A.230.158). This month helps people learn about disabilities, raise awareness, promote respect and acceptance, and build pride among individuals with disabilities.
  • Federal and state laws, along with court decisions, have helped students with disabilities go to public school, get the services they need, and be included in general education whenever possible.
  • State law requires public schools to teach students about disability history and help them understand what it means to live with a disability.
  • Parent Centers like PAVE help families and individuals understand disability rights. To find a Parent Center outside of Washington State, visit Find My Center on the Center for Parent Information and Resources (CPIR) website.

Celebrating the History of Disability Rights

Disability History and Awareness Month in October is a time for students, families, teachers, and community leaders to remember and learn about the disability rights movement. Equity and access are protected by law, but there is still work to be done to make sure that laws are followed so that everyone has fair access to opportunities.

Organizations like PAVE help families and individuals understand disability rights. They also explain how history has shaped today’s laws, including the words we use when we talk about disability rights.

Below 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 court case from the long history of disability rights.

1954​: Brown v. Board of Education​ of Topeka

This landmark Supreme Court case was brought by families who challenged racial segregation in public schools. In Brown v. Board of Education of Topeka (1954), the Court ruled that separating students by race was unfair and violated the 14th Amendment’s promise of equal protection under the law.

‘Separate but equal’was outlawed, and equal educational opportunities became a right of all citizens. ​

The decision helped establish the principle that all students deserve equal educational opportunities. It became a foundation for future disability rights cases. Advocates used this ruling to argue that students with disabilities also have the right to attend public schools and receive a fair education.

1964​: Civil Rights Act​

The Civil Rights Act of 1964 was a major law that helped protect people from discrimination. It made it illegal for state and local governments to deny access to public places, like schools, parks, and libraries. This law confirmed that equality is a legal right, and that discrimination is against the law.

It also helped desegregate public schools and gave the U.S. Attorney General the power to take legal action against schools or other public agencies suspected of breaking the law. It also stated that agencies that didn’t follow the law could lose their federal funding.

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

In P.A.R.C. v. Commonwealth of Pennsylvania (1971)*, a group of parents went to court to fight for their children’s right to go to public school. At the time, some schools didn’t allow children with disabilities to attend. The court decided that all children, no matter their abilities, have the right to a free public education.

A few months later, Mills v. Board of Education of the District of Columbia (1972) built on the P.A.R.C. decision. In Mills, the court found that education should not only be free and accessible to all students, but also suitable for each child’s needs. These two cases helped establish the principle that all children, regardless of ability, have the right to attend public school and receive an education suited to their individual needs.

To learn more about how individuals with intellectual disabilities gained education rights through these landmark cases, visit Disability Justice.

*Note: PAVE recognizes that past terminology has contributed to stigma. We are committed to using inclusive, disability-affirming language that reflects the preferences of individuals and communities, including identity-first and person-first approaches.

1973: The Rehabilitation Act

The rights of people with disabilities to get the help they need in order to be successful in school, at work, and in any public place or program was firmly established by the federal Rehabilitation Act of 1973. This federal law that is still active today and enforced by the Office for Civil Rights at the U.S. Department of Education. Part of it, Section 504, defines a disability as any condition that seriously affects a major life activity. If a student has a physical or mental condition that meets this definition, the school must follow the law and provide support to help the student access their education and participate in school activities.

1975: The Education for All Handicapped Children Act

In 1975, the U.S. passed the Education for All Handicapped Children Act, the first federal law focused on the education of children with disabilities. It required public schools to give students with disabilities equal access to free educational programming, along with evaluations, a specific learning plan, and input from parents. The law said that special education should emulate the learning experiences of students without disabilities as closely as possible. This means that students with disabilities have the right to a school experience that looks as much like a typical student’s program as possible. It also introduced the idea of the Least Restrictive Environment (LRE), encouraging schools to work harder to include students of many abilities in general education classrooms. To help families resolve disagreements with the school, the law outlined required dispute resolution procedures. Parents are given information about their rights through Procedural Safeguards that are shared 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. In 1979, thirty Washington parents received training on Special Education law. 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 continues to provide free information to professionals and parents about education rights under federal law.

To connect with a Parent Center outside Washington State, visit Find My Center on the Center for Parent Information and Resources (CPIR) website.

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. This system introduced a funding option called a waiver, which helps pay for in-home support. 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 might have lived in hospitals or institutions in the past are now able to 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)

The Americans with Disabilities Act (ADA) protects people from disability discrimination by the federal and state governments, including public schools. It also applies to all schools, workplaces, and any public or private place that offers goods or services to the public. The law covers people of all ages, including those who are treated unfairly because they are perceived to have a disability, even if they don’t have one.

Many ADA protections are like those found in Section 504 of the Rehabilitation Act of 1973. Both laws focus on equity and access, and they protect people with disabilities throughout their lifespan.

Understood.org offers resources for parents to learn about ADA protections in schools, including printable fact sheets. The U.S. Department of Justice provides an ADA Information Line to answer questions and help people report possible violations of the law. The Office for Civil Rights also provides guidance for students with disabilities as they plan for post-high school education programs.

1990: Individuals with Disabilities Education Act (IDEA)

The Education for All Handicapped Children Act was renamed and enacted as the Individuals with Disabilities Education Act (IDEA) in 1990. Free Appropriate Public Education (FAPE)came into being, which is still key to how schools support students with disabilities. FAPE means that every child with a disability has the right to an education that helps prepare them for further learning, work, and life. The law also protects the rights of students and their parents or guardians. Schools are required to check if a student’s program is working and make sure the student is making progress.

IDEA is an entitlement law, which means students with unique needs must get support based on their individual situation—not just what’s already available. This federal law guides how each state creates its own special education rules. In Washington State, those rules are found in the Washington Administrative Code (WAC), specifically in chapter 392-172A. Title 34, Part 104, is a federal rule that protects people from discrimination and is enforced by the Office for Civil Rights. 

1992: Rehabilitation Act Amendments

Amendments to the 1973 Rehabilitation Act focus on the abilities and choices of persons with disabilities. These changes challenge service systems and communities to support individuals as they work, live, and participate in the community. The Amendments are guided by the idea of a presumption of ability. This means that every person with a disability, regardless of the severity of the disability, can achieve employment and other rehabilitation goals, if they have the right services and support.

The primary responsibilities of the vocational rehabilitation system include:

  • Help individuals with disabilities make informed choices about jobs that lead to integration and inclusion in the community.
  • Develop an individualized rehabilitation program with the full participation of the person with a disability.
  • Match a person’s needs and interests with appropriate services and supports.
  • Work closely with other agencies and programs, including school districts, to build a strong and unified support system.
  • Focus on quality services and ensure service representatives honor the dignity, participation, and growth of each person as they explore employment options.

2000: Settlegoode v. Portland Public Schools

In 2000, the case of Settlegoode v. Portland Public Schools helped bring attention to the rights of teachers who work in special education. A former special education PE teacher filed the lawsuit after being fired for speaking up about problems with how IEPs were being followed. The court ruled that appropriate staff training is an important part of FAPE and that school staff have the right to stand up for students without being punished.

2004: IDEA Amendments

Congress updated IDEA by passing the Individuals with Disabilities Education Improvement Act (IDEIA) in 2004. Some parts of the law were changed to match the goals of the 2001 No Child Left Behind Act. Here are a few examples of updates:

  • IDEIA allowed 15 states to try out 3-year IEPs when parents agreed every year as a pilot program.
  • Based on a report of the President’s Commission on Excellence in Special Education, the law changed the requirements for evaluating children with learning disabilities.
  • New rules were added about how schools handle discipline for students in special education. These updates continue to shape discipline policies in Washington State.
  • The law strengthened the idea of Least Restrictive Environment (LRE), saying students should learn in regular classrooms with extra help and services, “to the maximum extent appropriate.”

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

Washington State passed a law to create Disability History and Awareness Month (RCW 28A.230.158), which takes place every October. The legislature explained 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 to create Employment First requirements people age 21 and older who receive services through the Developmental Disabilities Administration (DDA). The law states, “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 the history behind the law and the rules for how it would be implemented.

2013: Doug C. v Hawaii

In Doug C. v. Hawaii (2013), the court ruled that parents must be included in the IEP. The lawsuit was filed in behalf of a parent who was not included in a school meeting at which important decisions were made about their child’s IEP. The decision confirmed that families have a legal right to be part of planning their child’s education and that schools must make sure parents and guardians are involved.

2015: Every Student Succeeds Act (ESSA)

In 2015, Congress passed the Every Student Succeeds Act (ESSA) to update the Elementary and Secondary Education Act (ESEA), which had been the nation’s main education law for over 50 years. ESSA says that every child in the United States has the right to a free public education “to ensure that every child achieves.”

The law:

  • Protects the rights of disadvantaged and high-need students.
  • Requires for the first time that all students be taught to high academic standards that prepare them for college and careers.
  • Provides important information to families, educators, and communities through yearly statewide tests that show student progress toward high standards.
  • Encourages schools to use evidence-based strategies to support learning.
  • Expands access to high-quality preschool.
  • Keeps schools accountable when student groups are not making progress or graduation rates are low.

2017: Endrew F v. Douglas County School District

In Endrew F., the Court ruled that schools must offer an IEP that is reasonably calculated to enable a child to make progress, based on their individual circumstances of disability. The decision rejected the old “de minimis standard,” which allowed schools to offer only minimal progress. Trivial progress is no longer enough.

The ruling emphasized:

  • Grade-level goals for students who can learn in the general education classroom.
  • Parent participation in the IEP process.
  • Higher expectations for student growth under IDEA.

Writing for the Court, Chief Justice John G. Roberts explained that a child making only small gains would be like “sitting idly… awaiting the time when they were old enough to drop out.” The case continues to influence how schools and agencies support students with disabilities, and many professionals encourage families to hold schools accountable to these higher standards.

PAVE provides more information about parent and guardian rights to participate in their child’s education in this article: Parent Participation in Special Education Process is a Priority Under Federal Law .

Download the Disability Rights Timeline

A visual version of the timeline is available as a downloadable infographic to support learning and reflection.

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

Posted on by Nicol Walsh

Families can request an IEP (Individualized Education Program) meeting at any time—not just during the annual review. A sample letter is available to help parents and guardians formally make this request. Guidance is also provided on who must attend IEP meetings, common reasons for requesting one, and tips for organizing communication and documentation.

A Brief Overview:

  • Families can request an IEP meeting at any time—not just during the annual review.
  • Washington state law (WAC 392-172A-03095) requires that the IEP team include specific people and roles.
  • Common reasons to request a meeting include academic struggles, behavior concerns, new diagnoses, or transition planning.
  • Students can also request meetings to advocate for themselves or adjust goals and supports.
  • PAVE offers helpful tools to support families in preparing for IEP meetings, including a fillable Who’s Who on the IEP Team contact form and sample letter to formally request a meeting—both available for download in multiple languages within this article.

Introduction

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 the PAVE article, 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.

Required Members of the IEP Team

The 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 Washington Administrative Code (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)

According to Washington state law (WAC 392-172A-03095), the IEP team includes an individual who is knowledgeable about district resources. Sometimes a school principal or other staff member fulfills that role, but families or school staff can request attendance by someone who works in the district’s special education department. If a school administrator says during a meeting, “We’ll have to check with the district and get back to you,” it may mean that a key decision-maker isn’t present. In that case, families or students can request another meeting with all required team members. This is especially important if the team is discussing services that might cost more or involve a change in the student’s educational placement.

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 students and families can prepare for a meeting by creating a handout for the team, including a Student Input Form.

Who’s Who on the IEP Team

PAVE offers a fillable Who’s Who on the IEP Team contact form to help you organize contact information and roles of the IEP team members.

Who's Who on the IEP Team

Download the Who’s Who on the IEP Team contact form in:
English | Chinese (Simplified) 中文 (Zhōngwén) | Korean 한국어 (Hangugeo) | Russian Русский (Russkiy) | Somali Soomaali | Spanish Español | Tagalog | Ukrainian українська | Vietnamese Tiếng Việt

Common Reasons to Request an IEP Meeting

Parents, guardians, and students have the right to request an IEP team meeting at any time during the school year—not just during the annual review. If there are concerns about a student’s progress, changes in needs, or questions about services and supports, it’s appropriate to ask for the team to come together. IEP meetings can be used to problem-solve, update goals, adjust services, or simply ensure everyone is on the same page. Regular communication helps keep the plan relevant and responsive to the student’s needs.

Here are a few examples of reasons parents or guardians 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 or guardian wants to discuss further evaluation by the school or an independent agency

Here are a few examples of reasons parents or guardians might request an IEP meeting:

  • Feeling unsupported in class
  • Academic struggles
  • Trouble with peers or behavior plan
  • Goals don’t feel meaningful or realistic
  • Preparing for life after high school (transition planning is required by age 16)
  • New diagnosis or change in personal circumstances
  • Practicing self-advocacy or wanting a more active role in the IEP process

PAVE provides a sample letter to request an IEP meeting. You can copy and paste the text of this sample letter into your word processor to build your own letter. If sending through email, the format can be adjusted to exclude street addresses.

Sample Letter to Request an IEP Meeting

PAVE provides a sample letter to request an IEP meeting. You can copy and paste the text of this sample letter into your word processor to build your own letter. If sending through email, the format can be adjusted to exclude street addresses.

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

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.

Learn More

Childcare-What to Know When Your Child has a Disability 

Posted on by Nicol Walsh

When a parent or family caregiver needs care for their child with a disability, finding safe, appropriate, and affordable care will be a priority. There are resources for children with disabilities and their families in Washington State to find safe and affordable childcare. For providers which take federal funds, civil rights laws protect access and appropriate services for children with disabilities and their families. 

A Brief Overview 

  • Two reliable sites with lists of childcare providers in Washington State are WA State Department of Children, Youth, and Families at findchildcarewa.org, and Childcare Aware of Washington Family Center, which is also by phone at 1-800-446-1114. 
  • Childcare takes place in many different settings, licensed and unlicensed. A state license for childcare can help you decide if a childcare setting is safe. This article tells you how to find out if a provider is licensed. 
  • It’s good to ask certain questions before enrolling a child with a childcare provider. This article offers a sample list. 
  • Three laws protect the rights of children with disabilities in childcare settings that accept federal funding: Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA) Part C (Birth to Age 3) and Part B (Age 3 through high school graduation) and Section 504 of the Rehabilitation Act of 1972. 
  • Childcare can be expensive. This article explains about tax credits and state programs that help working families, free early learning programs and preschool, and financial help when family, friends, or neighbors provide childcare for your child. 

How can I find listings for childcare in WA State?

 Use this link for listings on the Washington State Department of Children, Youth, and Families (DCYF): findchildcarewa.org 

Washington State partners with Child Care Aware of Washington Family Center. The phone number for individual assistance with your childcare search is 1-800-446-1114 

How can I find out if a childcare center, program, or family home childcare is safe? 

By law, Washington State licenses certain childcare settings. Licensing sets standards that childcare programs and providers must meet. State inspections help ensure that licensed programs and providers meet the standards, which cover a wide range of topics, from the safety and cleanliness of the physical setting through number of staff per child, staff training, and age-and-ability appropriateness of activities and education. 
Links to Washington’s licensing rules are on DCYF’s page on Becoming a Licensed Child Care and Early Learning Provider. 

Licenses are required for: 

  • Family home early learning programs: 
    An early learning program licensed by the department where a family home licensee provides childcare or education services for 12 or fewer children in the family living quarters where the licensee lives. 
  • Childcare center early learning programs: 
    A facility providing regularly scheduled care for a group of children aged from birth through 12-years-old for periods of less than 24 hours a day. 
  • School-age programs (might provide before and after-school childcare and school vacation care): 
    A facility providing regularly scheduled care for a group of children 5 through 12-years-old for periods less than 24 hours a day, when children are not attending school. 
  • Outdoor Nature-Based program: 
    An early learning program that offers regularly scheduled care for preschool-age children, school-age children, or mixed-age children for periods less than 24 hours a day, when children are not attending school. 

What types of childcare don’t need a license? 

  • A nanny or babysitter in your family’s home 
  • Informal parent cooperatives (example: “babysitting exchange”) 
  • Play groups 
  • Educational preschools that operate less than four hours a day 
  • Parks and Recreation programs run by cities and towns 
  • Family members, friends, and neighbors who provide occasional care (If friends or neighbors are providing childcare for multiple children on a regular basis, they are required to have a state license.) 

Programs operated by cities and towns may have standards set by the local government. Contact your local Parks and Recreation Departments to find out what standards their facilities need to meet, how staff are chosen and background checked, and any other questions you have about whether a program will be safe and appropriate for your child. 

Programs that operate on federal or state funding must meet Washington State licensing requirements, such as Head Start and Early Childhood Education and Assistance Program 
(ECEAP). 

More on Head Start and ECEAP under “How to pay for childcare.” 

Find out if a program or provider is licensed by: 

This search tool lets you search for licensing history (has the home or center ever lost its license?), state monitoring reports (did the inspectors find anything to worry about?) status of staff background checks (are they being done?) and more. The tool finds information in Washington State’s database of all licensed childcare facilities and home childcare providers. 

Here is a downloadable, printable checklist of questions to ask when you visit a childcare setting. It’s from ChildCare Aware of Washington: Child Care Quality Checklist 

Questions to ask a provider:  

Questions to ask a provider when enrolling a child with disabilities into a childcare program. It’s important for parents to ask questions to ensure the provider can meet their child’s unique needs.  

  • What experience do you have caring for children with disabilities? 
  • Do you have staff trained in special education or disability support? 
  • What is your adult-to-child ratio, and how flexible is it for children needing more support? 
  • Are staff trained in administering medications or managing medical devices (e.g., feeding tubes, EpiPens, inhalers)? 
  • How do you support children with behavioral challenges? 
  • What is your approach to discipline, and how is it adapted for children with developmental or emotional disabilities? 
  • Can you create or follow an Individualized Care Plan or IEP? 
  • Are you willing to make reasonable modifications to activities, routines, or environments? 
  • Do you allow assistive technology or support items (e.g., communication devices, wheelchairs, noise-canceling headphones)? 

Are there laws that support my child with disability and protect their rights in a childcare setting? 

There are three laws that may apply to childcare settings: 

  • Americans with Disabilities Act (ADA)  
  • Individuals with Disabilities Education Act (IDEA), Part C (Birth to Age 3) and Part B (Age 3 through high school graduation) 
  • Section 504 of the Rehabilitation Act of 1972, usually referred to as “Section 504” or “504” 

Title III of the Americans with Disabilities Act (ADA) applies to: 

  • Federal, state, and local government-agency programs. Examples of this are Head Start, ECEAP (preschools operated by local school districts), summer programs, and extended day school programs. 
  • Privately run childcare centers such as those licensed by Washington State. “Even small, home-based centers are covered by title III of ADA”  
  • Private childcare centers that operate on the property of a religious organization, leasing or renting space on that property. 

ADA does NOT apply to childcare centers that are RUN by religious organizations, such as a church, temple, mosque, or synagogue. 

ADA requires childcare providers to give both children and parents with disabilities an equal opportunity to participate in the provider’s programs and services. 

  • Centers cannot exclude children with disabilities from their programs unless their presence poses a direct threat to the health or safety of others or requires a fundamental alteration of the program. 
  • Centers must make reasonable modifications to their policies and practices to integrate children, parents, and guardians with disabilities into their programs unless doing so would constitute a fundamental alteration. 
  • Centers must provide appropriate auxiliary aids and services needed for effective communication with children or adults with disabilities, when doing so would not constitute an undue burden. 
  • Centers must generally make their facilities accessible to persons with disabilities. Existing facilities are subject to the readily achievable standard for barrier removal, while newly constructed facilities and any altered portions of existing facilities must be fully accessible. 

This website has many examples of situations to help parents and childcare providers understand what the law requires: Commonly Asked Questions about Child Care Centers and the Americans with Disabilities Act. 

Individuals with Disabilities Education Act (IDEA), Part C (Birth to Age 3): 

Children aged birth to 3 who have a disability or are at risk for certain disabilities may be eligible for services under IDEA. For children who qualify, Part C of IDEA authorizes services to support and promote a child’s development “in their natural environment.” This usually means the family home and often, the child’s childcare setting.  
 
Parents can request their child be evaluated (tested) to see if they are reaching expected developmental stages. If evaluators find that a child needs support, a Family Resource Coordinator (FRC) will help the family create an Individualized Family Services Plan (IFSP). Family members have important roles in that plan, and professional staff provide services and help the family to use natural learning opportunities like playtime, meals, or baths to create opportunities for a child to practice and develop delayed skills. 

Services in an IFSP may include, but are not limited to:  

  • Specialized instruction 
  • Speech therapy 
  • Occupational therapy 
  • Physical therapy 

If childcare is a part of your child’s regular schedule, services may be able to be provided in the childcare setting, such as a scheduled time for a speech therapist to work with your child during childcare hours, and for childcare staff to include your family’s daily “practice time” to help your child meet their development goals. 

 If you are just beginning to look for childcare, your FRC may be a good resource to advise you on things to look for and questions to ask to find a childcare setting that can support your family’s IFSP. 

You can check out these resources for much more information on Birth-to-3 programs: 
 
Disability Rights for Littles: Key Information for Families of Babies, Preschoolers, and Primary-School Children (videos) -all the basics you need to know 

PAVE: From Birth to Three Toolkit Basics and beyond! Read online or download, includes FAQ sheet and “cheat sheets”, summaries of important information at-a-glance.  

WA State Department of Children, Youth and Families (DCYF) Early Intervention Services page: Includes contact information and links to apply for an evaluation for ESIT services to find out if your child qualifies. 

Individuals with Disabilities Education Act (IDEA), Part B (Age 3 through high school graduation): 

IDEA Part B applies to preschool and school-age children, and exists to ensure schools, preschools, and kindergartens provide eligible children with disabilities a Free, Appropriate Public Education (FAPE). When disabilities affect how a child is doing in preschool or school, IDEA Part B states that schools and preschools are required to evaluate the child to see if they qualify for special education and related services and supports. This article from PAVE has important background on this law: IDEA: The Foundation of Special Education. 

If a child is eligible for special education, a team is brought together that includes parents, and an Individualized Education Program (IEP) is created for the child, listing the goals, education, and other supports the school or preschool will provide to meet the child’s learning needs. 

For childcare settings, IDEA Part B will apply for these types of childcare settings: 

This PAVE resource explains the differences in services between Part B and Part C of IDEA. 

Section 504 of the Rehabilitation Act of 1973 

Often called “Section 504” for short, this federal law administered by the Office of Civil Rights prohibits discrimination based on disability. To be protected under Section 504, a child must have a physical or mental impairment that substantially limits one or more major life activities, have a record of such an impairment, or be regarded as having such an impairment. 

Section 504 applies to individuals 3-22 years of age. The law requires childcare centers, camps, and any other recreational programs that receive federal funding to provide preschool children with disabilities equal access to the program, with reasonable accommodations and modifications. 

It also includes programs like Head Start, summer programs, and extended school day programs.  

Requirements for childcare centers: 

  • Non-discrimination: Childcare centers cannot refuse to admit a child with a disability.  
  • Reasonable Accommodations: They must provide reasonable accommodations to enable children with disabilities to participate in the program.  
  • Individualized Assessments: Childcare providers must make an individualized assessment of a child’s needs.  
  • Modifications to Policies and Practices: They must make reasonable modifications to their policies and practices.  
  • Accessible Facilities: Childcare centers must ensure that physical spaces are accessible.  

Help paying for childcare:  

Federal Tax Credit: The child and dependent care credit is a tax credit that may help you pay for the care of eligible children or dependents. This credit is based on your income and the cost of caring for your children or eligible dependents to work, look for work, or attend school.  

Seattle has a Child Care Assistance Program. 

Washington State offers a program through the Department of Children, Youth, and Families (DCYF): 

Working Connections Child Care (WWCC) helps working families pay for childcare. If a family qualifies and chooses an eligible provider, Washington State will pay part of childcare costs. Parents are responsible for any copayment of childcare fees not covered by the state, and those are payable to the provider every month. 

  • The child or children must live in Washington State 
  • The family with whom the child lives must live in Washington State 
  • The family’s income must be at or below 60% of the State Median Income 
  • The family must have less than $1 million in resources 
  • Parent or parents must be participating in an approved activity, such as self-employment, employment, or being in high school or post-secondary education or taking part in the WorkFirst or BFET program. 
  • Families experiencing homelessness are eligible. 
  • If a parent or parents are seasonal agricultural (farm) workers, and live in certain counties, they may be eligible for the Working Connections program. 

An additional up-to-date online resource is MomsRising.org. This site has brief, helpful information about the Working Families Child Care Program, especially when your child or children have a disability. It goes over issues such as: 

  • How families and family size are defined for this program 
  • Children with physical, intellectual and/or developmental disabilities 
  • Children and families experiencing homelessness 
  • Families where the parent or parents are high school or college students 
  • What types of childcare are available 
  • Getting financial assistance when a family member, friend, or neighbor can take care of your child or children 
  • You can check details of your eligibility, including income requirements, on DCYF’s Working Connections Child Care website page.  
  • Apply by calling the Child Care Subsidy Contact Center 1-844-26-8687 or online at Washington Connection.  
  • Get help applying for this program and help finding childcare that meets your family’s needs through ChildCare Aware of WA. 

Free state-licensed early learning childcare or preschool: 

Head Start programs are federally funded and Early Childhood Education and Assistance Program (ECEAP) is a Washington State-funded program for children aged three and four, and in some locations, infants and toddlers younger than age three. Head Start offers services to pregnant women in some locations.  

Your local school district will have an ECEAP program available. 

Children are eligible for these programs based on their age and family incomes, with some children able to attend these free programs if they have multiple support needs. Visit the ECEAP & Head Start programs page on the DCYF website for more detail and contact information in English and Spanish. 

Financial help for childcare by family, friends, or neighbors: 

In Washington, this category is called Family, Friend and Neighbor Care. These settings are not required to have a license and are very common arrangements.  
Informal care for children in your home or the family’s home may involve some expenses, and Washington State recognizes this with financial assistance (subsidies). Visit the Family, Friend and Neighbor Care page on DCYF’s website for contact information to apply for subsidies.