Autism Spectrum Disorder: Information and Resources for Families

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) accepts diagnoses from Autism Centers of Excellence (COEs) as a component of DDA services eligibility, with the exception of 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 Helpline Request for direct support and click on the “Health and Wellness” link to be directed with individual support.

Full Article

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 consider challenges and celebrations for individuals who experience neurodiversity, which is a word used to capture a 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.

Some early childhood indicators of ASD include:

  • 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 supports 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 also 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).

Where to Begin to Obtain Supports

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, with the exception of 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 Helpline 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.

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.

Additional Resources

The downloadable Autism Guidebook for Washington State, published by a dedicated Autism Task Force in collaboration with the 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.

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.

COVID Considerations for Families to Plan for Fall 2022

A Brief Overview

  • Free COVID vaccinations are available for adults and for children as young as six months.
  • Washington State does not require students to be vaccinated against COVID to enroll for school in the 2022-23 academic year.
  • Local school districts establish their own policies and procedures for health and safety and illness response.  

Full text of video

Over a million Americans have died of COVID, and transmission rates  in Washington State remain high as we head into the 2022-23 school year.

Individual school districts decide what restrictions and policies to put in place for students, teachers, and staff. Families can ask their school district for specific information about safety measures and what to do if a student is ill or exposed to someone who is ill or testing positive for COVID.

The Office of Superintendent of Public Instruction, OSPI, provides guidance and suggestions for school staff and families on its COVID-19 Resources Page.

Whether to vaccinate your children remains a personal choice. The Washington State Board of Health has the authority to require COVID-19 immunization for children in K-12 schools but has not done that, as of Summer 2022.

Although not responsible for deciding whether to require vaccines, the state’s Department of Health, DOH.wa.gov, is a place to get current information and recommendations.

What protections against COVID are there for children and teens?

The federal government is providing COVID-19 vaccines free of charge to everyone living in the United States, regardless of their immigration or health insurance status.

Free vaccinations are available to people 6 months and older. The Centers for Disease Control and Prevention, the CDC, has approved the two-dose Pfizer and Moderna vaccinations for toddlers, children, and teens.

Here are three ways to find out how and where to get vaccinated for free:

  1. Search vaccines.gov
  2. Text your ZIP code to 438829
  3. Call 1-800-232-0233

Children and teens ages 5 through 17 are advised to get a third “booster” dose of the vaccine if they have moderate or severe difficulties with their immune system.

All employees in educational settings are required to be fully vaccinated or have a medical or religious exemption. OSPI provides more information about that requirement in a document that includes Frequently Asked Questions.

The Washington Department of Health has created Requirements and Guidance for minimizing transmission of COVID in schools and childcare settings, including isolation of anyone who shows symptoms of COVID.

Click Get Help at wapave.org for individualized support from PAVE.

Health Information for Families as Schools Reopen During COVID Pandemic

As schools open for the 2021-22 school year, families have decisions to make about health and safety. This article provides information and resources to address some key questions:

  • What measures are schools required to take to keep children and staff safe?
  • What COVID precautions should our family consider?
  • What should we do if returning to in person school doesn’t feel safe for our family?
  • Will schools address children’s social and emotional well-being after everything that has happened?

This article provides information to address these questions and includes state and federal resources to support families in decision making.

Overall priorities at the state and national level include:

  1. Health and physical safety by following a layered approach with COVID protocols for masking and hygiene to the maximum practical extent
  2. Mental health and social emotional learning support for all students, with state and federal funds to enable schools to hire additional staff focused on student well-being
  3. Accelerated academics to help students recover from interrupted learning (See PAVE’s article on Recovery Services)

These priorities are listed in the US Department of Education’s Return to School Roadmap, which includes this guidance in its opening paragraphs:

“We must welcome families back in authentically, listen and seek to understand their concerns, and respond to their needs, so that all families feel comfortable sending their students to school this fall. As we start the 2021-2022 school year, schools and communities must address gaps that were exacerbated by the pandemic and build our education system back better than before.”

What measures are schools required to take to keep children and staff safe?

Washington’s Department of Health (DOH) issued a 13-page document on July 28, 2021, to detail requirements for the 2021-2022 school year. The state’s guidance mirrors recommendations from the Centers for Disease Control and Prevention (CDC). Priority is to minimize virus transmission while maximizing in-person learning.

Families with questions or who need access to the DOH information in another format are encouraged to contact the COVID-19 Information hotline: 1-800-525-0127. Hours are 6 am-6 pm, with additional hours until 10 pm on Mondays. For interpretative services, press # when they answer and say your language. To request DOH information in another format, call 1-800-525-0127. Deaf or hard of hearing customers, please call 711 (Washington Relay) or email civil.rights@doh.wa.gov.

Here are key points from Washington’s DOH guidance:

  • Vaccination is recommended for anyone 12 and older, and schools must verify the vaccination status of staff and faculty as required by Labor and Industry. According to DOH, “Schools should promote vaccinations for eligible students, teachers, staff, and families.”
  • Face coverings are required for all students and staff indoors and during school transportation. Exemptions are made for “people with a medical condition, mental health condition, developmental or cognitive condition, or disability that prevents wearing a face covering.”
  • Physical distancing of three feet or more is recommended indoors as practical: “Physical distancing requirements should not prevent a school from offering full-time, in person learning to all students….”
  • Schools must maintain good ventilation: “Offer more outside time, open windows often, and adjust the HVAC system to allow the maximum amount of outside air to enter the program space and increase air filtration.”
  • Schools are tasked to teach and manage proper hygiene, including frequent handwashing and “respiratory etiquette” (cover coughs and sneezes/wash hands after blowing nose, etc.) to minimize viral spread: “Some students with disabilities might need assistance with handwashing and respiratory etiquette behaviors.”
  • Schools must clean and disinfect surfaces and spaces frequently, in accordance with guidance from the CDC and the Environmental Protection Agency (EPA).
  • Symptomatic students and staff are asked to stay home and seek a medical evaluation before returning to school.
  • Schools must ensure students and staff can access timely COVID testing.
  • Schools are recommended to screen students who are not fully vaccinated at least weekly when community transmission is at moderate or higher levels. In accordance with CDC guidance, the state is not recommending fully vaccinated people for routine screening. Additional testing is recommended for athletes, coaches, and others engaged in contact sports or activities such as singing, which generates aerosols from the mouth that can spread virus.
  • Isolation of ill individuals is required to be in a space reserved for first aid or a separated room with an open window or good ventilation: “If no appropriate indoor space is available and the child can be supervised and made comfortable, an outdoor setting is an acceptable emergency alternative if weather and privacy permitting.”
  • If a person tests positive for COVID, here’s when they can return to school:
    • 10 days since they first got sick (up to 20 days for severe illness or if immunocompromised)
    • 24 hours after fever is gone
    • Symptoms have improved

Students who need to stay home have educational rights

The CDC provides a Flow Chart to direct schools, students, and families about what to do if a student becomes ill at school.

Schools are asked to keep records about people who are exposed to others who are sick. If the person who was exposed to illness has not been vaccinated, they will need to stay home/quarantine themselves until it’s clear they aren’t getting sick. If the person exposed to COVID has been vaccinated or has recovered from a past COVID infection, they don’t have to quarantine if they aren’t sick. Schools are required to release information about COVID-19 cases to local public health officials as part of a case or outbreak investigation.

A student staying home sick has the right to educational access, including special education services that are accessible and support progress toward educational goals. According to DOH, “Schools must have a response and communication plan in place that includes communication with staff, families, their school district, and their local health jurisdiction. Schools should prepare for instructing students and their families who are excluded from school due to illness or quarantine in accordance with all federal and state laws.”

What COVID precautions should our family consider?

The CDC provides guidance for families for talking about COVID-19 and slowing its spread. Here are a few ideas: 

  • Reassure children that they are safe. Share how you deal with your stress, so they learn to cope from you. If a child is anxious, reduce exposure to pandemic topics in the media.
  • Avoid language that might blame others and lead to stigma.
  • Provide information that is truthful and appropriate for the age and developmental level of the child. Use the information in this article to share a few ideas about how school might have new rules for protecting everyone.
  • Seek trusted information about vaccines to make an informed decision about who in the family can and should be vaccinated. The CDC provides a three-minute video with overview information, and Family Voices of Washington provides an article with more detail to support decision making. To find a vaccination site in your area, go to COVIDWA.com or call 1-833-VAX-HELP (833-829-4357). Language assistance is available. You can also text your zip code to 438-829 for vaccine locations near you.
  • Teach everyday actions to reduce the spread of germs. Remind children to wash hands frequently and to cough or sneeze into a tissue or their elbow.
  • Practice mask wearing and choose face coverings that will work all day at school. If appropriate, involve students in a plan to keep the face coverings clean and ready for each school day. If a child’s disability prevents mask wearing, talk about why that will be okay and prepare to share disability specific information with school staff. DOH provides guidance about mask wearing and exemptions in an Order from the Secretary of Health

What should we do if returning to in person school doesn’t feel safe for our family?

The U.S. Department of Education with the CDC presented at a Parent Town Hall on July 29, 2021.  During the virtual event, Department of Education staff responded to a question by a parent who wanted her child to keep learning from home for health and safety reasons. The parent was reminded that the department provides guidance and best practice strategies but does not regulate state educational agencies or local districts.

The advice was to ask for a meeting with school and/or district staff to discuss a plan for ongoing distance learning. If a workable plan isn’t developed, families are advised to contact their state educational agency (OSPI in Washington), local school board, or governor’s office. Note that Washington is a local control state, so individual districts are responsible to write their own policies and procedures within the limits of state and federal law.

No student rights are waived due to the pandemic, and students have levels of educational protections depending on their circumstances. Every child has the right to a free public education, through Every Student Succeeds Act (ESSA). Students with disabilities have the right to a Free Appropriate Public Education (FAPE) that is equitable, accessible and designed to meet their individualized needs. The right to FAPE is protected by Section 504 of the Rehabilitation Act of 1973 and by the Individuals with Disabilities Education Act (IDEA).

If a student is eligible for an Individualized Education Program (IEP), the IEP team is responsible to make decisions about the best placement for a student to receive FAPE. FAPE requirements include the right to an IEP that is reasonably calculated to enable progress appropriate in light of the student’s circumstances.

If family caregivers believe that home-based instruction is necessary for safety and well-being, then the IEP team must consider the family’s request and document its decision process through Prior Written Notice (PWN). If the school makes a decision that the family disagrees with, parents of children with disabilities have Procedural Safeguards that protect their right to mediation or a complaint process.

Additionally, Washington families can contact their local school board, which is required to conduct its work through an Open Meeting process that allows for public comment. The Governor’s Office of the Education Ombuds (OEO) provides guidance to families and schools that need support to reach agreement.  

Will schools address social and emotional well-being?

Washington’s Office of Superintendent of Public Instruction (OSPI) has made clear in its guidance that student well-being is a priority as schools reopen. State and federal dollars, including those from the American Rescue Plan, enable schools to hire staff such as nurses and counselors to support student well-being.

OSPI provides a guidebook: Academic and Student Well-Being Recovery Plan: Planning Guide 2021 For School Districts, Tribal Compact Schools, and Charter Schools. Included is information about how state and federal dollars are awarded based on formal plans submitted by districts.

In their plans, districts must include statements about how student well-being will be supported. Districts are asked to prioritize social emotional learning and equity issues related to the disproportionate impact of the pandemic on different populations.

Families impacted by trauma, death, or other challenges during the pandemic can review their district’s Recovery Plan and consider whether their student’s needs are likely to be met. If there are concerns, family members can meet with school and district staff to request a more individualized approach. For students with IEPs, needs related to specific losses and trauma can be discussed in the context of an IEP Recovery Services plan. For more information about Recovery Services, see PAVE’s article: Recovery Services: What Families Need to Know as Schools Reopen.

Families who have experienced elevated stress due to COVID and want more support can reach out to the Washington Listens help line: 1-833-681-0211.

PAVE’s Family-to-Family Health Information Center (F2F) provides direct assistance for questions related to health and wellness, insurance, and access to medical services. For questions about school-based services, our Parent Training and Information (PTI) staff can help. Click Get Help from our home page at wapave.org to request individualized support.

Families with Disability Concerns Take Extra Care when Planning for Emergencies

A Brief Overview

  • All families prepare for emergencies, but extra planning is critical when a loved one has a disability.
  • The Family-To Family Health Information Center provides Information about COVID-19 and updates about local, regional, and statewide healthcare policies and programs.
  • Virginia Commonwealth University offers an Emergency Preparedness Tool Kit for People with Disabilities through its university center called Partnership for People with Disabilities. The downloadable, 29-page booklet includes checklists and resources.
  • The Federal Emergency Management Agency (FEMA), an agency of the United States Department of Homeland Security, also provides a downloadable brochure: Preparing Makes Sense for People with Disabilities.
  • Military families, each installation has a Comprehensive Emergency Management Plan (CEMP 10-12). Read on for links to specific military resources.
  • This article includes a variety of resources and ideas about how to be informed and organized, with a disability-specific toolkit and emergency plans that are ready to roll if something unexpected does occur.

Full Article

COVID-19 has highlighted a need for emergency planning, and Washington State families might consider additional contingencies to plan for: winter snowstorms, flooding, wildfires, volcanoes, earthquakes…. The planning can alleviate stress and create a sense of confidence that a plan is in place for everyone’s safety if something unexpected does occur.

To be fully prepared, a family may need an emergency plan and a survival kit to support to a loved one with additional needs that are specific to a disability. Following are guidelines for getting organized and ready, with each person’s individualized needs in mind.

While building an emergency plan and toolkit, families may need to consider how to include tools and strategies for providing a sense of comfort and safety for individuals with anxiety, sensory needs, or behavioral challenges. A favorite blanket, stuffed toy, or noise cancelling headphones might be part of the kit. A handheld electronic device might provide a sense of normalcy; if one is included, be sure chargers or batteries are also part of the toolkit.

Gathering the toolkit ahead of time can enhance a sense of calm and save time when quick action is needed. Family to Family Health Information Center at PAVE has a page set up with tools and links around disability and special healthcare needs.

Be informed

Some disaster scenarios include sheltering in place, and others require movement to a safe location. The Red Cross provides information on a page titled Be Informed to help determine which types of emergencies are most likely in a designated community. Some areas are more prone to forest fires, floods or earthquakes, for example. Consider whether local public systems share information or alert the public if something is happening or about to happen. Will there be a telephone alert or a broadcasted siren? Will there be an emergency broadcast to tune in? The Emergency Alert System (EAS) includes a statewide list of radio stations that broadcast emergency alerts by area.

Consider whether there are shelters nearby, or an evacuation route. The Red Cross encourages people to download the agency’s mobile app to receive local alerts that can include emergency-specific instructions in real time. The agency also provides a page dedicated to disaster safety that takes a step-by-step approach for people with disabilities. Included are guidelines for creating a personal assessment and registering with a local emergency assistance program.

You can also download the FEMA app to get weather alerts from the National Weather Service for up to five different locations.

Make a plan

Create escape routes that are accessible to everyone within the household. Choose a meet-up spot after everyone has evacuated the home, property, or neighborhood. Consider accessibility based on the entire family’s needs: For example, will someone need to arrive at the meet-up spot by wheelchair? If someone will need a helper to evacuate, designate a helper and a back-up person to provide that support.

Tell emergency contacts about the family’s plan. Consider telling neighbors or nearby friends about where medications or mobility assistance devices (crutches, wheelchairs, walkers) are stored in case help is needed to get those things. The plan includes what may happen before, during and after a disaster.

The Red Cross provides a template for a 3-step plan, to be shared and verified with everyone who might be involved or recruited to help:

  1. All household members discuss how to prepare and respond to the types of emergencies most likely to happen where they live, learn, work and play.
  2. Identify responsibilities for each member of the household and plan a way to work as a team.
  3. Practice as many elements of the plan as possible.

Military Families

Military families may have unique and specific concerns. Each installation provides support for a Comprehensive Emergency Management Plan (CEMP 10-12). Additionally, families might seek assistance from the family support office through the Exceptional Family Member Program (EFMP) or a Family Resource Specialist (Coast Guard).

Here are additional places to seek information about emergency planning for military families: