Tag: disability

Autism Spectrum Disorder: Information and Resources for Families

Posted on by Nicol Walsh

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.
  • The University of Washington Autism Center provides a collection of resources in categories that include online tools, early recognition, service organizations, and neurodiversity.
  • 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.

Normalizing “our brains are geared differently” and we all struggle with these things, but the electrical components in the brain can make it even more difficult when navigating these areas (communication, making choices, understanding social cues and facial expressions, etc.)

An autistic person may experience challenges requiring support in multiple areas, often including behavior, sensory processing, and communication.

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.

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.

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 families of individuals with ASD.

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

What is Person Centered Planning?

Posted on by Nicol Walsh

What it is?

Person-centered planning is all about making decisions that focus on you as a unique individual. It’s about listening to what you want and need, and then working together to make those things happen.

Woman who uses a wheelchair smiles while holding her phone.

Get Involved! Become a Person Centered Planner.

Training sessions are starting soon! Seize this chance to make a positive impact on other’s lives while pursuing your dreams!

Who we are looking for:

  • Individuals with disabilities who are inspired to lead and innovate.
  • Motivated persons interested in personal and community development.
  • Aspiring entrepreneurs looking to create a significant impact through their own business.
Register today to find out more about becoming a Person Centered Planner!

What Are the Benefits?

  • You’re in Charge: With person-centered planning, you get to take the lead in making choices about your life. It’s about giving you the power to decide what’s best for you.
  • Tailored Support: Instead of fitting you into a standard plan, person-centered planning creates a plan just for you. It’s like having a customized roadmap to help you reach your goals.
  • Looking at Everything: This approach looks at all parts of your life, not just one aspect. It helps make sure you get the support you need for everything that matters to you.
  • Feeling Good: When you’re in control and getting the support you need, it can make life more enjoyable and fulfilling. Person-centered planning helps you feel good about yourself and your future.
  • Working Together: It’s not just about you making decisions alone. Person-centered planning brings together everyone who cares about you to help support you on your journey.

What Makes it Special?

  • You’re the Focus: Person-centered planning is all about you. It respects your thoughts, feelings, and dreams, putting you at the center of everything.
  • It Adapts: Life changes, and so do your needs. Person-centered planning is flexible and can change and grow with you as you move forward.
  • Thinking Long-Term: It’s not just about today but your future, too. Person-centered planning helps you set goals for the long haul and supports you in reaching them.
  • Being a Part of Things: This approach encourages you to be involved in your community and pursue things that matter to you, like school, hobbies, and friendships.
  • Feeling Strong: Person-centered planning helps you become more confident and independent. It’s about empowering you to speak up for yourself and make choices that shape your life.

If you’re interested in learning more about person-centered planning:

For Teachers: If you’re a teacher and would like assistance from a PAVE staff member to help your students develop a plan, please contact us for pricing details.

For Parents: If you’re a parent who believes your child could benefit from a person-centered plan, inform your child’s teacher to contact us.

You can get in touch with us at: pcp@wapave.org

Healthcare in Transition

Posted on by Nicol Walsh

Healthcare transition, like all other aspects of transitioning to adult care and services, can be difficult. However, if teenagers and families plan ahead for healthcare changes that occur when a child becomes an adult, things can go smoothly and be successful. Here are some resources and information for making the health care transition to adult care successful and seamless.

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

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

Health Insurance and Providers

For individuals on Medicaid, Medicare, or private health insurance, eligibility, cost, and what services are covered may change.

Washington’s Medicaid option, Apple Health, has different financial requirements for adults than they do for minors. See the chart below for current income requirements for Apple health.

ProgramSingle person2-person house-hold3-person household4-person household5-person household6-person household7-person household
Apple Health for Adults, age 19 through 64 years of age$1,677 monthly$2,268 monthly$2,859
monthly		$3,450
monthly		$4,042
monthly		$4,633
monthly		$5,224
monthly
Current income requirements for Apple Heath
  • To apply or renew for Apple Health, go to the Health Plan Finder website.  Even if an individual is not eligible for fully subsidized healthcare, the Health Plan Finder can reveal some low-priced options. 
  • For young adults on their parents’ private insurance, they will have coverage under their parent’s plan until they are 26, at which time they will need to apply for their own health insurance.  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.

A person’s health insurance may limit the health care providers available. Once you and your family know what type of health insurance you will have, you can select from physicians and other health professionals who accept that insurance. Most medical practices either list what insurances they accept, or you can call the office and ask. Health care insurance plans may also send information on where to find a provider, or you may find it on their website.

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 and teens can avoid overwhelming a teen with new obligations, 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 for individuals with disabilities that can 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 are the young adults, whether you are the parent/caregiver or a transitioning individual. It’s important to recognize that lived experience gives knowledge even in a new situation. There is the knowledge of medical need that may not be in a chart, emotional or behavioral challenges, developing self-determination that supports transition, and other important things only you know.  Next in line are the current medical providers and specialists.  They not only have helped numerous other teens transition to adult healthcare, but 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 help to 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.

5 Tips for Success in Healthcare Transition
Download The Five 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 Including Health Considerations in the Transition Plan

Exploring Assistive Technology: Understanding, Access, and Resources for All Ages and Abilities

Posted on by Nicol Walsh

Brief overview:

  • Access to assistive technology (AT) is protected by four federal laws.
  • The U.S. Department of Education has released guidance on the specific requirements about providing AT under the Individuals with Disabilities Education Act (IDEA). The guidance takes the form of detailed explanations for many misunderstood facts about using AT in schools and early intervention services. It is available online and in PDF form in English and Spanish.
  • AT can be very simple and low-cost, or it may be high-tech or large and expensive. Resources for deciding on AT devices and services and buying or getting low-cost or free TA are included in the article.

Full Article

You can also type “assistive technology” in the search bar at wapave.org to find other articles where assistive technology is mentioned.

What is assistive technology (AT)? Who uses it? Where is it used?
Assistive technology (AT) is any item, device, or piece of equipment used by people with disabilities to maintain or improve their ability to do things. AT allows people with disabilities to be more independent in education, at work, in recreation, and daily living activities. AT might be used by a person at any age—from infants to very elderly people.

AT includes the services necessary to get AT and use it, including assessment (testing), customizing it for an individual, repair, and training in how to use the AT. Training can include training the individual, family members, teachers and school staff or employers in how to use the AT.

Some examples of AT include:

  • High Tech: An electronic communication system for a person who cannot speak; head trackers that allow a person with no hand movement to enter data into a computer
  • Low Tech: A magnifying glass for a person with low vision; a communication board made of cardboard for a person who cannot speak
  • Big: An automated van lift for a wheelchair user
  • Small: A grip attached to a pen or fork for a person who has trouble with his fingers
  • Hardware: A keyboard-pointing device for a person who has trouble using her hands
  • Software: A screen reading program, such as JAWS, for a person who is blind or has other disabilities

You can find other examples of AT for people of all ages on this Fact Sheet from the Research and Training Center on Promoting Interventions for Community Living.

Select the AT that works best:

Informing Families, a website from the Developmental Disabilities Administration, suggests this tip: “Identify the task first. Device Second. There are a lot of options out there, and no one device is right for every individual. Make sure the device and/or apps are right for your son or daughter and try before you buy.”

AT3 Center, a national site for AT information, has links describing, finding and buying a wide variety of assistive technology, with text in English and Spanish.

Understood.org offers a series of articles about AT focused on learning in school, for difficulties in math, reading, writing, and more.

Who decides when AT is needed?  Your child’s medical provider or team may suggest the AT and services that will help your child with their condition. If your child is eligible for an Individualized Education Program (IEP), an Individualized Family Services Plan (IFSP), or a 504 plan, access to AT is required by law. In that case, the team designing the plan or program will decide if AT is needed, and if so, what type of AT will be tried. Parents and students, as members of the team, share in the decision-making process. A process for trying out AT is described on Center for Parent Information and Resources, Considering Assistive Technology for Students with Disabilities.

Access to assistive technology (AT) is protected by four laws:

  1. The AT Act of 2004 requires states to provide access to AT products and services that are designed to meet the needs of people with disabilities. The law created AT agencies in every state. State AT agencies help you find services and devices that are covered by insurance, sources for AT if you are uninsured, AT “loaner” programs to try a device or service, options to lease a device, and help you connect with your state’s Protection and Advocacy Program if you have trouble getting, using, or keeping an assistive service or device. Washington State’s AT agency, Washington Assistive Technology Act Program (WATAP), has a “library” of devices to loan for a small fee and offers demonstrations of how a device or program works.

IDEA Part C includes AT devices and services as an early intervention service for infants and toddlers, called Early Support for Infants and Toddlers (ESIT) in Washington State. AT can be included in the child’s Individualized Family Service Plan (IFSP). When a toddler transitions from early intervention services to preschool, AT must be considered whether or not a child currently has AT services through an IFSP.

It’s important that a student’s use of AT is specified in their post-secondary Transition Plan. This will document how the student plans to use AT in post-secondary education and future employment and may be needed when asking for accommodations from programs, colleges and employers when IDEA and IEPs no longer apply.

Guidance on assistive technology (AT) from the U.S. Department of Education

In January 2024, the U.S. Department of Education sent out a letter and guidance document on the Individuals with Disabilities Education Act (IDEA) requirements for assistive technology for children under Part C and Part B of IDEA.

The guidance document is available online and in a downloadable pdf in English and Spanish. It includes common “Myths and Facts” about AT. The document is designed to help parents, early intervention providers, educators, related service providers, school and district administrators, technology specialists and directors, and state agencies understand what IDEA requires.

For instance, there are examples of what IFSPs might include:

  • A functional AT evaluation to assess if an infant or toddler could benefit from AT devices and services;
  • AAC devices (e.g., pictures of activities or objects, or a handheld tablet) that help infants and toddlers express wants and needs;
  • Tactile books that can be felt and experienced for infants and toddlers with sensory issues;
  • Helmets, cushions, adapted seating, and standing aids to support infants and toddlers with reduced mobility; and
  • AT training services for parents to ensure that AT devices are used throughout the infant or toddler’s day.

For IEPs, some important facts from the guidance document are:

  • Each time an IEP Team develops, reviews, or revises a child’s IEP, the IEP Team must consider whether the child requires AT devices and services (in order to receive a free appropriate public education (FAPE).
  • If the child requires AT, the local educational agency (LEA) is responsible for providing and maintaining the AT and providing any necessary AT service. The IEP team can decide what type of AT will help the child get a meaningful educational benefit.
  • The IEP must include the AT to be provided in the statement on special education, related services, and supplementary aids and services.
  • A learner’s AT device should be used at home as well as at school, to ensure the child is provided with their required support.
  • AT devices and services should be considered for a child’s transition plan as they can create more opportunities for a child to be successful after high school. (Note: AT can be an accommodation used in post-secondary education and in a job).

If a student is already using AT devices or services that were owned or loaned to the family, such as a smartphone, theguidance includes information about how to write it into an IEP or an agreement between the parents and school district.

Paying for AT

Some types of AT may be essential for everyday living including being out in the community and activities of daily living like eating, personal hygiene, moving, or sleeping. When a child has an AT device or service to use through an IFSP, IEP, or 504 plan, the device or service belongs to the school or agency, even if it’s also used at home. All states have an AT program that can help a school select and try out an AT device. These programs are listed on the Center for Assistive Technology Act Data Assistance (CATADA) website. A child’s AT devices and services should be determined by the child’s needs and not the cost.

When a child graduates or transitions out of public school, they may need or want AT for future education or work. In these cases, families can look for sources of funding for the more expensive types of AT. Here are some additional programs that may pay for AT devices and services:

AT for Military Families

Some programs specific to the United States Armed Forces may cover certain types of assistive technology as a benefit.It’s important for Active-Duty, National Guard, Veteran and Coast Guard families to know that they are eligible for assistive technology programs that also serve civilians, including those in Washington State.

If the dependent of an Active-Duty servicemember is eligible for TRICARE Extended Care Health Option (ECHO), assistive technology devices and services may be covered with some restrictions. The program has an annual cap for all benefits and cost-sharing, so the cost of the AT must be considered. The AT must be pre-authorized by a TRICARE provider and received from a TRICARE-licensed supplier. If there is a publicly funded way to get the assistive technology (school, Medicaid insurance, Medicaid Home and Community-Based Services Waiver, state AT agency loaner device, or any source of taxpayer-funded access to AT), the military family must first exhaust all possibilities of using those sources before ECHO will authorize the AT.

Some types of AT, such as Durable Medical Equipment, may be covered under a family’s basic TRICARE insurance plan.

The United States Coast Guard’s Special Needs Program may include some types of assistive technology as a benefit.

Additional Resources
Assistive Technology

Does my child qualify for Assistive Technology (AT) in school?

Movers, Shakers, and Troublemakers: How Technology Can Improve Mobility and Access for Children with Disabilities

Low tech tool ideas that can be used to increase Healthcare Independence

What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 1: Ages Birth to 12

Posted on by Nicol Walsh

Overview:

Full Article

Thinking about the future when you will no longer be available to help your child because of death or a condition where you cannot participate in their care can be emotionally difficult. On top of that, this planning process is full of important decisions with significant impacts on your child’s future. To prevent being overwhelmed, it may help to review the entire article, and then tackle the tasks and steps needed to create a plan.

Legal Planning. You will need:

  • A will:If you die and either don’t have a will or don’t specify a guardian in your will, the courts will appoint someone, and it won’t necessarily be a family member. It could be a complete stranger. A will usually includes almost all your instructions for how you want your child to be cared for when you die.
  • A Letter of intent: It expresses your wishes for your child which are not included in the will. It has no legal standing, but acts as a guide for guardians, Power of Attorney agents, and trustees.  It can be provided to your selected guardians and a copy can be saved with the lawyers who helped you set up your will and Powers of Attorney.
  • Powers of Attorney (POAs): Create agents, people who can legally act on behalf of your child for financial, health care and other life areas. They are selected by you, for after your death or when you are temporarily or permanently not capable of caring for your child. These agents do not have to be the same people you select as guardians. These are legal documents best prepared with the help of a lawyer and must be notarized.

Wills:

Who will be your minor child’s guardian? What will they need to know about your child?
How will your child be financially supported while a minor? It’s recommended that parents select someone different than the guardians to manage their child’s finances. Think about close friends as well as your parents or siblings. If your child is older, think about adults with whom your child has a bond. This can help if you want your child to continue in their current school, job, or neighborhood.
List each child individually when naming a guardian, and list all your minor children. Probate courts will not assume you want the same guardian for all your children unless you list them that way and might appoint a separate guardian for unlisted children!

            For ex: “I/We name Harold and Maude Green as guardians for our minor children Georgia Brown, Michael Brown, and Theodore Brown”.

Important: Do not directly leave your child with disabilities any money or assets in your will. Instead, have that child’s share of their inheritance pass to a Special Needs Trust and/or ABLE Account (as described below). Note that in this situation, it’s good to have a lawyer draw up the will to make sure that the inheritance does not impact your child’s current or future benefits, such as Social Security programs or Medicaid.

Financial Planning

Government Benefits: For the present time, and for your child’s future

Supplemental Security Income (SSI) for your child at any age. The SSI program makes cash assistance payments to aged, blind, and disabled persons (including children) who have limited income and resources. Many states pay a supplemental benefit to persons in addition to their Federal benefits.

People who qualify for SSI may, in some states, qualify for Medicaid health insurance, which is either free or low-cost.

Social Security Disability Insurance (SSDI) program for disabled and blind persons. The amount of the benefit is based on your child’s contributions to Social Security OR based on the parents’ earnings. Your child must meet Social Security criteria for disability.

Social Security Administration provides a useful comparison chart on important differences between the two programs on their Red Book page.

Payments from either program are often not enough to pay for everything your child may need or want, and any money or assets in your child’s name may cause their Social Security benefits, Medicaid coverage, and other benefit programs (supported housing, SNAP /food stamps, etc.) to be cut back or eliminated.

Funding your child’s future directly

Special Needs Trusts and ABLE accounts are ways to provide for your child financially that do not reduce their government benefits. They differ in many ways, with their own pros and cons. You might wish to have both an SNT and an ABLE account based on your family’s circumstances.

An ABLE account is a tax-advantaged savings account that can fund disability expenses. Currently, the beneficiary of the account (the person with a disability) must have acquired the disability before age 26, and this age limit will increase to before age 46 on January 1, 2026. The beneficiary of the account owns the funds. Interest (income) earned by the funds will not be taxed. Anyone can contribute to the account (the individual with disabilities, their family members, friends, or a Special Needs Trust).

The funds in the ABLE account are generally NOT COUNTED as income or assets against an individual’s eligibility for SSI, Medicaid, and other programs with income and asset limits, such as federal student aid, HUD housing programs, and SNAP (food stamp) benefits.

Money from an ABLE account may be used for disability-related expenses to supplement benefits through private insurance, Medicaid, SSI, employment, and other resources. The ABLE National Resource Center gives specifics on ABLE accounts on their website.

Special Needs Trust (SNT): A trust is a legal “tool” for managing funds, and Special Needs Trusts are set up so that the beneficiary of the trust, in this case your child with disabilities, can have the funds used on their behalf. Money in the SNT is not counted against income limits for government benefit programs. You can arrange for the Special Needs Trust to be the beneficiary for life insurance policies and retirement plans. You can let friends and relatives know that they can give or leave money/assets to your child through the trust.

Government benefits will cover most of the basic needs while monies from the trust can pay for your child’s wants. Only a qualified attorney should set up the trust. If it is done incorrectly, your child’s benefits could be at risk.

There are several types of SNTs. The one most commonly set up by parents or guardians for a child is called a third-party special needs trust, which means that the funds in the trust are from someone other than the child. Military parents may designate Survivor Benefit Plan payments to an adult dependent child with disabilities, but only through a first party trust.

NOTE: Unlike ABLE accounts, which were set up according to federal law, there is no “official” source of information on Special Needs Trusts. Many elder and disability law practices will have information on their websites about SNTs. Additional information from disability organizations can be found at:

ARC of the United States: Type “Special Needs Trust” in the search bar to find a large number of articles on the topic, not only for individuals with developmental disabilities.

Military OneSource: Type “Special Needs Trust” into the search bar for military-specific information on SNTs.

It’s important to know that a professional should help you create the SNT. Consult with an attorney with expertise in elder and disability law. When naming trustees, it’s important to not only name yourselves, but to name backup (“secondary”) trustees to cover situations when you are not able to act as trustees. Setting up secondary trustees is separate from setting up agents using a Power of Attorney (POA). The authority of an agent under a POA may not be accepted by the financial or legal organization where the trust funds are held. You may choose to use the same individuals you selected for your financial POA, or different people.

Special Needs Alliance “is a national alliance of attorneys for special needs planning.”  They have a directory of attorneys which currently lists two attorneys in Washington State who are members of that organization.

You can search for attorneys with SNT experience through the American Bar Association.

Legal work can be expensive! Here are some resources to seek out free or low-cost help and referrals:

  • WashingtonLawHelp.org: This website has articles on topics about future planning, such as wills, guardianship of children and adults, alternatives to guardianship, Powers of Attorney, and information for non-parents raising children along with many others
  • CLEAR intake hotline: “CLEAR is the statewide intake line for free and low-cost civil legal aid in Washington. Call 1 (888) 201-1014 or use the online intake form on the website. Seniors (people age 60 and over) can access intake by calling CLEAR*Sr at 1 (888) 387-7111. Veterans may dial 1 (855) 657-8387”.
  • ABA Home Front: If you are military, and you do not wish to use your Judge Attorney General (JAG) or they do not have experience with Special Needs Trusts or other future planning when your child has a disability, the American Bar Association has several programs, including free or low-cost options, to locate an attorney or program with a focus on military families. Veterans can get free legal answers on this website, too!

For information on future planning steps in your child’s teen years and through adulthood, see PAVE’s article: What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 2: Age 13 through Adulthood

Giving the Gift of Sensory-Regulation: Supporting a Happy Holiday Season for All  

Posted on by Nicol Walsh

It’s the most wonderful time of the year, that is, until…  

Sensory overload can happen to anyone. It is not specific to any single age or disability. In fact, it can also happen to people who do not have a disability.  Whether your sensory systems are functioning as usual for you or disordered, your body needs both sensory input and a break from sensory input.  

The holidays can be a joyous but chaotic time for the whole family. Planning ahead to ensure your personal sensory needs are met, as well as those of your loved one with a disability, can make the difference between experiencing a beloved tradition and struggling to fulfill holiday obligations. In this article, we will share time-honored tips and innovative ideas for managing sensory needs throughout the holiday season from family members, professionals, and self-advocates.  

 Try out these holiday planning and self-regulatory tools.  

Download the Sensory Systems and How to Meet Their Needs  

Get to know the eight sensory systems, what they do for the body, and some quick ideas for getting sensory input for each system.  

Download the Holiday Mindfulness Profiles  

Use these worksheets to identify your own needs, as well as the needs of your loved one with a disability. Identify what you find enjoyable, what you dread, and rethink your schedule with time to meet your personal needs. Then, use the second page to discuss and plan for your loved ones needs. 

 Download the Ground Yourself in the Moment Worksheet  

Apply this strategy of counting down with sensory input to calm yourself or your loved one when you feel anxious. Use this worksheet to help yourself or your loved one through each step in the countdown process.  

Additional Resources:

Home for the Holidays: The Gift of Positive Behavior Support 

Holiday Survival Tips for Families with Special Healthcare Needs

Home for the Holidays: The Gift of Positive Behavior Support

Posted on by Nicol Walsh

A Brief Overview 

  • This article provides examples and simple guidance about how to be more strategic in parenting a child who struggles with behavior. 
  • PAVE consulted with University of Washington positive behavior support expert Kelcey Schmitz for this article. 
  • Anticipating trouble and making a best guess about the behavior’s “purpose” is a great place to start. 
  • Listen and look for opportunities to praise expected behavior. It’s easy to forget to pay attention when things are going well, but keeping the peace is easier if praise is consistent while children are behaving as expected. 
  • Read on to gift the family with a plan for improving holiday happiness. 

Full Article 

Holidays can be challenging for families impacted by disability, trauma, grief, economic struggles, and other stressors. The holiday season has its own flavors of confusion. Families with children who struggle with behavior may want to head into the winter with plans in place. Anticipating where trouble could bubble up and developing a strategy for working it out provides all family members with opportunities for social-emotional growth, mindfulness, and rich moments. 

PAVE consulted with a University of Washington (UW) expert in positive behavior supports to provide insight and information for this article. Kelcey Schmitz is the school mental health lead for the Northwest Mental Health Technology Transfer Center, housed at the UW School Mental Health Research and Training (SMART) Center. An area of expertise for Schmitz is Multi-Tiered Systems of Support (MTSS), a framework for schools to support children’s academic, social, emotional, and behavioral strengths and needs at multiple levels. An MTSS framework makes room for Positive Behavioral Interventions and Supports (PBIS). When done well, PBIS teaches and reinforces positive social skills, communication strategies and “restorative justice” (working it out instead of punishing). 

“This holiday season may present additional challenges,” Schmitz says. “Remembering core features of PBIS at home, such as predictability, consistency, safety, and positive interactions are going to be key. In fact, lessons learned during stay-at-home orders during the pandemic can and will carry us through the holidays and beyond.” 

Schmitz has provided articles and content to support PAVE families over the years and offers the following tips for navigating the holidays by using PBIS strategies at home. 

Make a list and check it twice to know what troubling behaviors are about 

Whatever the holidays mean and include, family routines can shift. Food can look and taste different. The house may be decorated in a different way. School takes breaks. Weather changes, and sunrise and sunset are closer together. 

Children may struggle with changes in routines, different food items on the menu, overstimulating environments, long periods of unstructured activities, or sensory issues that make long pants, socks, gloves, coats, and hats feel like shards of glass. 

Keep in mind that all behaviors serve a purpose; they are a way for the child to solve a problem. Without appropriate social skills, children will do what is necessary to have their needs met in the quickest way possible. However, adults who can predict problem behaviors may also be able to prevent them. 

TIP: Anticipate trouble and make a best guess about the motivation 

Set your child (and family) up for holiday success by thinking ahead about the types of routines and situations that might be challenging. Craft a plan to intervene early, before a full-blown escalation. 

Create a best guess statement to better understand the relationship between an unwanted behavior and the child’s environment. Summarize what usually happens by describing: 

  • The behavior (tantrum, hitting, refusal). 
  • Circumstances that set the stage (what’s going on right before the behavior?). 
  • What happens after the behavior (time out, angry adults, something removed or given). 
  • A best guess about the child’s motivation/the “purpose” of the behavior (to get something or get out of something). 

Here is an example: 

At Grandma’s holiday gathering, an adult encourages a child to try a food, demands a “please” or “thank you,” or scolds the child. Note if the child is tired, hungry, or uncomfortable in an unusual or unpredictable situation. These are the circumstances that set the stage. 

The child cries and yells loud enough to be heard in another room (description of the behavior). 

During the child’s outbursts, others leave her alone (what happens after the behavior). 

Best guess about the purpose? The child may want to avoid unpleasant people, food, or situations. 

Making a good guess about what causes and maintains the behavior (crowded or overstimulating environment, being rushed, being told they can’t have or do something they want, different expectations, demands, exhaustion, hunger) can support a plan and potentially avoid worst-case scenarios. 

Determining the purpose or function of a behavior may require a closer look at what typically happens (what others say or do) after the behavior occurs. The behavior may be inappropriate, but the reason for it usually is not.  Most of the time there is a logical explanation. Here are some questions to help think it through: 

  • Does the child get something–or get out of something? 
  • Does the child generally seek or avoid something, such as: 
    • Attention (from adults or peers)? 
    • Activity? 
    • Tangibles (toys/other objects)? 
    • Sensory stimulation? 

Make a list and check it twice: Prevention is key 

Many behaviors can be prevented using simple proactive strategies. Adults can use their best-guess statement to build a customized strategy. Here are some starter ideas that might help prevent or reduce the intensity, frequency, or duration of unwanted behaviors: 

  • Make sure the child is well rested and has eaten before going out. 
  • Bring food that is familiar and appealing. 
  • Anticipate challenges, and plan accordingly. 
  • Pre-teach family expectations (respectful, responsible, safe) and talk about how those expectations work at grandma’s house: “When someone gives you a present, say thank you and smile at the person who gave you the gift.” For information about developing family expectations, see PAVE’s article, Tips to Help Parents Reinforce Positive Behaviors at Home. 
  • Encourage the child to bring a comfort item (toy, book, blanket). 
  • Give more “start” messages than “stop” messages. 
  • Teach a signal the child can use to request a break. 
  • Create a social story about family gatherings; review it regularly. 
  • Rehearse! Practice/pretend having a meal at Grandma’s house, opening gifts, playing with cousins, and other likely scenarios. 
  • Arrive early to get comfortable before the house gets crowded. 
  • Create a visual schedule of events, and let the child keep track of what’s happening or cross off activities as they happen. 

Respond quick as a wink: Reward replacement behavior 

An essential prevention strategy is teaching what to do instead of the unwanted behavior. “What to do instead” is called replacement behavior. To be effective, the replacement behavior needs to get results just as quickly and effectively as the problem behavior. 

For example, if a child learns a signal for taking a break, adults need to respond to the signal just as fast as they would if the child starts to scream and cry. 

Responding quickly will strengthen the replacement behavior and help make sure that the unwanted behavior is no longer useful. 

Here are steps to help teach replacement behaviors: 

  1. Demonstrate/model the wanted behavior 
  1. Provide many opportunities for practice 
  1. Let the child know they got it right (as you would if they learned a skill like riding a bike, writing their name, or saying their colors) 

Praise a silent night 

Inspect what you expect. Listen and look for opportunities to praise expected behavior. It’s easy to forget to pay attention when things are going well, but keeping the peace is easier if praise is consistent while children are behaving as expected. 

  • Evidence indicates that children’s behavior improves best with a 5:1 ratio of positive-to-negative feedback.  
  • Increasing positive remarks during difficult times—such as holidays —might reduce escalations. 
  • Provide frequent, genuine, and specific praise, with details that help encourage the specific behavior being noticed. For example, say, “You did a nice job sharing that toy truck with your cousin!” 

All is calm: Intervene at the first sign of trouble 

Be ready to prompt appropriate behavior, redirect, or offer a calming activity when there are early signs of agitation or frustration. 

  • Provide early, clear instructions about “what to do instead,” using language and modeling consistent with what was pre-taught and practiced (see above). 
  • For example, if a child is getting frustrated, say, “Remember, you can give me the peace signal if you need a break.” 
  • Redirect the child to another activity or topic when appropriate and practical. 
  • Hand the child a comfort item (stuffed animal, blanket). 
  • Show empathy and listen actively: “It seems like you’re having some big feelings right now. Want to talk about it?” After listening, maybe say, “Wow, that’s a lot to feel.” 

Do you hear what I hear? Heed alarm bells when plans need to shift 

Not all challenging behaviors can be prevented, and adults may overestimate a child’s ability to control emotions. A child experiencing significant distress may be unable to process what is going on around them and follow what may seem like simple instructions. 

If an adult’s best efforts are unable to prevent or diffuse a behavior escalation, a graceful exit may be the best strategy. It’s important for adults to remember that a child’s crisis isn’t their crisis. An adult’s ability to remain level-headed is critical, and children may ultimately learn from the behavior they see modeled. 

Wait for a child to calm down before addressing the issue: An overwhelmed brain is not able to problem solve or learn. Later, everyone can review what worked or did not work to adjust the strategy for next time. 

Believe: Be a beacon for hope 

Support a child to learn, practice, and perform behaviors that enable fun, rich family experiences. The work may feel challenging—and the scale of the project may be impacted by a unique set of tough circumstances—but expecting and accepting the challenge enables the whole family to move toward new opportunities. Trust that the work will pay off—and relish the moments of success, however large or small. Believe that consistency and predictability can make a big impact this holiday season and beyond. 

Here are a few points to review: 

  • What might seem fun and relaxing to adults, could be overwhelming and upsetting to children. 
  • Children are more likely to exhibit the behavior that will most quickly get their needs met, regardless of the social appropriateness. 
  • Acting out is typically a symptom of an underlying issue – it’s important to examine the root of the problem for long-term positive results. 
  • Prevention strategies and intervening early can be very effective, but they are often underutilized. Plan ahead to eliminate, modify, or neutralize what might set off behavior. 
  • Support wanted behaviors by teaching them, practicing them, modeling them, and making them consistent sources for praise and encouragement. 

Resources: 

The Comprehensive, Integrated Three-Tiered Model of Prevention (ci3t.org) provides videos and other Related Resources for Families in English and Spanish (scroll down the page to find the Resources for Families). 

The Center on Positive Behavioral Interventions and Supports (PBIS.org) provides a downloadable booklet (English and Spanish) for Supporting Families at Home with PBIS 

Parent Training Modules from Vanderbilt University’s Center on the Social and Emotional Foundations for Early Learning (CSEFEL), available in English and Spanish 

YouTube video interview with Mark Durand, author of Optimistic Parenting: Hope and Help for You and Your Challenging Child 

Step-By-Step Guide to Requesting Accommodations on SAT and ACT Exams

Posted on by Nicol Walsh
How to Request Accommodations on College Entrance Exams

The transition from high school to college can be a daunting experience for any teenager. Part of the transition process is preparing for and taking the entrance exams for college. If the student is receiving accommodations in school, they may qualify to receive special accommodations while taking a college entrance exam.

The ACT and College Board Services for Students with Disabilities (SSD) do not approve accommodations for all college entrance exams. Contact your school, college, or testing center for the CLEP and ACCUPLACER tests. Students with documented disabilities may request accommodations on PSAT-related assessments with the help of their school counselor.

Differences Between SAT and ACT Exams

Most universities accept both SAT and ACT and the length of both tests is approximately the same.  ACT has more questions in that same period, so fast workers may prefer it.  However, the best one for a student is the one they feel best about, so trying sections of both before choosing which one to study for is recommended by most test prep professionals. Both ACT and SAT have free practice sections available.

SATACT
Reading (65 min, 52 Questions)Reading (35 min, 35 Questions)
Writing (35 min, 44 Questions)English (45 min, 75 Questions)
Math (80 min, 58 Questions)Math (60 min, 60 Questions)
Optional essay (50 min)Science (35 min, 40 Questions)
Scored 400-1600Optional essay (30 min)
Scored 1-36

A student must have approval from the College Board SSD (for the SAT) or ACT to use accommodations on an exam. If a student uses extended test time or other accommodations without prior approval, their test results will be invalid.

The process of requesting accommodations varies depending on the exam. These are the steps to request accommodations on SAT and ACT college entrance exams:

Step 1: Document the need for accommodations.

The student must have a documented disability. Documentation can be a current psycho-educational evaluation or a report from a doctor. The type of documentation depends on the student’s circumstances. The disability must impact the student’s ability to participate in the college entrance exams. If the student is requesting a specific accommodation, documentation should demonstrate the difficulty the student has performing the related task. The College Board provides a disability documentation guideline and accommodation documentation guideline, as does the ACT. Doctor notes and Individualized Education Program (IEPs) or 504 plans may not be enough to validate a request for accommodations; you must provide supporting information, such as test scores. 

While students typically only receive accommodations if they have a documented disability, some (very few) students who have a temporary disability or special healthcare need can also be eligible. The request is different in these circumstances for those who wish to take the SAT exam and students are often urged to reregister for a date after they have healed. If the student cannot postpone their test, the request form for temporary assistance must be completed by a school official, student (if over 18) or parent, doctor, and teacher. Then, the form must be faxed or mailed to the College Board for processing.

Step 2: Allow plenty of time for processing.

It takes time to apply for accommodations, including a processing period of up to seven weeks after all required documentation has been submitted to the College Board SSD or ACT. If they request additional documentation, or if a request is resubmitted, approval can take an additional seven weeks. Start as early as possible before the exam date to allow enough time for processing, responding to a request for more documentation, and additional processing time. If the student will take the exam in the fall, they should begin the process in the spring to allow sufficient time for processing.

Step 3: Identify appropriate accommodations.

If the student has a formal education plan, review the current plan, and note accommodations listed throughout, especially (but not only) those the student uses during assessments. Read through recent medical evaluations, prescriptions, and records to ensure all accommodations have been included in the formal education plan, if the student has one, or to locate appropriate accommodations recommended by medical professionals. You may recognize some of the Possible Accommodations for SAT and ACT Entrance Exams.

Some accommodations may only be provided during certain sections of the exam, depending on the specific accommodation requested. For example, a student with dyscalculia may receive extended time during the math section of the exam but not for any other subject.

Step 4: Submit the request for accommodations.

The easiest way to request SAT accommodations is to go through your student’s school. If you choose to go through the school, the school’s Services for Students with Disabilities (SSD) Coordinator (Special Education Coordinator, Guidance/School Counselors, etc.) can go online to review the SAT Suite Accommodations and Supports Verification Checklist and submit the application. Having the coordinator submit the application will help streamline the process. Homeschooled students or those who choose not to go through the school may request accommodations on the SAT exam by printing the Student Eligibility Form and submitting all documentation by fax or postal mail.

Requesting accommodations for the ACT exam requires working with a school official who is a part of the IEP team. The accommodations requested should be similar to the accommodations currently being received in school and must be approved by ACT before the test. All requests, including appeals, must be submitted by the late registration deadline for the preferred test date. Homeschooled students may request accommodations on the ACT exam by creating an ACT account online and submitting the required documents electronically.

Step 5: Register for the college exam.

Once the student is approved for SAT accommodations, they will receive a Service for Students with Disability (SSD) number that must be included when registering for the test. The school’s SSD Coordinator should ensure all the correct accommodations are in place when it is time to take the college exam. Approved accommodations will remain in effect for one year after graduation from high school.

Additional Information

Movers, Shakers, and Troublemakers: How Technology Can Improve Mobility and Access for Children with Disabilities

Posted on by Nicol Walsh

A Brief Overview

  • Mobility (the ability to move around) is important for interacting with the world, developing social relationships, and participating in our community
  • Ableism is when people are treated unfairly because of their body or mind differences. This can make people feel ashamed. It can also make it hard for them to move around because places aren’t accessible. This means they have fewer chances to be mobile.
  • Studies show that when kids with disabilities have self-initiated mobility (can start moving on their own), it helps them grow, make friends, and take part in things. This is true no matter how they move around.
  • Many young children with disabilities lack access to mobility technologies such as wheelchairs or supportive walking devices
  • It is important to spread the word about the benefits of mobility technology, and some of the current barriers that limit access to mobility technologies for children with disabilities
  • We need to tell people about how mobility technology can help kids with disabilities. We need to talk about why it can be hard for families to get this technology and work on making it easier to access these tools.
  • There are many ways for families to try mobility devices for children. They can work with their therapy teams to access the technology they need.
  • This article was developed in partnership with PAVE by Heather A. Feldner, PT, PhD, PCS and Kathleen Q. Voss (ed.),  University of Washington CREATE  (Center for Research and Education on Accessible Technology and Experiences)

Connecting to the World through Mobility

I want to invite you to take 30 seconds and think back to when you were a kid. What did you love to do?​ Why did you love it? How did this contribute to who you were, and how see yourself now? For me, it was playing the 80’s childhood game ‘ghosts in the graveyard’ around my neighborhood in the summer. Ghosts in the graveyard combines tag and hide-and-seek…in the dark. What could go wrong?!  I was with my friends, people I trusted. I was in my own yard, and the yards of my neighborhood. Places I knew well. Sure, there was a bit of risk, or what we thought to be risk in our young minds, but I loved to do it. I felt free and safe at the same time.​

So, what did you think of? Maybe for some of you, it was reading. For others, playing with friends at a playground, or in the sand and water at the beach. Maybe you were a dancer, or an artist. Perhaps you were on a sports team of some sort. Maybe it was none of these things. And regardless of how or where, I imagine we all got into some troublemaking. So, what made it all possible? I would guess that whatever it was, it was possible because of your ability to connect to the world, and objects, and people through mobility. ​

Ableism, Troublemaking, and the Importance of Mobility

Though we may have our own special idea of what mobility means, there’s also likely a lot of common ground, too. Let’s start with how the dictionary defines mobility and locomotion. According to Merriam-Webster, locomotion is defined as ‘the act or power of moving from place to place’. For mobility, we find ‘the ability or capacity to move; the ability to change one’s social or socioeconomic position in a community and especially to improve it.’ What stands out to you when you see these definitions? What is or isn’t included?

Note the definitions don’t talk about how people move or who’s moving. But what they do highlight is that mobility is powerful and social. We know society values some types of movement, like walking, more than others. For those with disabilities, this value judgement can lead to harm. This is ableism at work. It is thinking that being normal means being able-bodied. Ableism leads to unfair treatment of those who function differently. This connects to other ‘isms’ and makes things even harder. Even though there are tools like wheelchairs, walkers, scooters, and gait trainers to help with mobility, ableism affects how we see and value this technology in society. Because of this, people with disabilities wait longer for access, pay more, and have fewer choices. Just exploring these options can cause people to feel shame. Even then, many places are still inaccessible. Our mobility isn’t just about getting from one place to another. It helps us connect with others, make friends, explore new things, and have fun. When the mobility of disabled people is limited, it is an equity issue. For children with disabilities, ableism can take away their chance to be troublemakers.

Parents know that toddlers can be a handful. They touch everything, make messes, and often try to run away. But what if a toddler has a physical disability? How can we help them learn about their bodies and the world around them, especially when they might need help or special equipment to move around? Research shows that when kids start moving on their own, they learn a lot. They get better at understanding space, thinking, talking, and moving. Their relationships with parents and caregivers also improve. They show more emotions and hear more language from adults. These benefits happen for all kids, whether they crawl, use a baby walker, or drive a mobility device.

When kids can’t move on their own, either by using their muscles or with technology, they may have trouble starting to play and interacting with others. They may also have slower development in thinking, seeing shapes, and body awareness. Caregivers may not notice when the child tries to move or talk. Kids with disabilities are often described as quieter and better behaved than other kids. They are often placed near the fun but are not always part of the fun. This is not the child’s fault. It’s because our surroundings, technology, and ways of doing things don’t reflect how important it is for very young children with disabilities to move on their own. Parents and disabilities rights groups have worked hard to make schools more inclusive. But we need to do more to see how technology and design can help kids move and truly take part in things. As a pediatric physical therapist for kids and a technology researcher, my goal is to help kids with disabilities have more chances to be movers, shakers, and troublemakers.

Spreading the Word about the Importance of Self-Initiated Mobility

I work at the University of Washington as a researcher and associate director of an accessibility center called CREATE- The Center for Research and Education on Accessible Technology and Experiences. Our center has researchers from many different fields. We all focus on accessibility in different ways. My focus is on helping kids with disabilities access mobility technology. Our team works with children ages 1-5 who have trouble moving because of conditions like cerebral palsy, Down syndrome, spina bifida, muscular dystrophy, spinal muscle atrophy, and genetic conditions. Some kids will learn to walk. But it’s important for them to have other ways to move around while they practice. Sometimes people think using mobility technology keeps children from developing motor skills like walking. This isn’t true. Research shows that using technology can even help kids learn to walk and do other things better! Our work at CREATE is to learn more about how kids use technology to move and to explore new technology together with the disabled community. We want to share how mobility technology helps kids grow and interact with their world.

Trying Out or Obtaining Mobility Technology

  • We know it’s important for kids with disabilities to be able to move around on their own. Mobility technology can help them do that. If families want to try out or get this technology, how can they start? Here are some important things to think about:
  • Talk with your therapy team to see if they have any devices at the clinic that you can try or borrow
  • If they do not have any devices you can try, ask to be put in touch with a local durable medical equipment supplier. In Washington, you can also contact NuMotion, Bellevue Healthcare, or Olympic Pharmacy and Healthcare.
  • Regional equipment lending libraries may mobility technology for children. It is always worth asking. In Washington, Bridge Disability Ministries has locations in Tukwila and Bellevue, The Washington Technical Assistance Program (WATAP) ships mobility technology accessories (not devices themselves) across the state. There are many other libraries throughout the state that are grouped together on the Northwest Access Fund loan program website.
  • When buying mobility technology, there are many things to consider. Think about the size and weight of the device and your transportation needs. Also think about how your home is set up and how your child will grow. An equipment clinic at a local hospital or therapy center can help. They have staff that can help you find the best equipment for your child as they grow.
  • Some people buy mobility technology themselves, but most get it through public or private funding. To get funding, you need a letter from a doctor saying your child needs the equipment. The letter must explain why the equipment is a good match for your child’s needs, how much it costs, and how it will be used at home and in the community. Staff at equipment clinics usually write the letter and send it to the doctor to sign. Then they send it to the funding agency.
  • It can take 3-12 months to get approved for mobility technology, depending on how you’re paying for it. Sometimes the first request is denied, and you have to appeal. It’s important for you and your equipment clinic team to keep fighting for your child’s needs.
  • You can also make your own mobility technology through the University of Washington Go Baby Go! program. This program changes battery-powered toy cars so kids with disabilities can use them. The cars are changed with a switch and special seats to help kids move around on their own. The program is for young kids from 9 months to 5 years old and is free for families.

Families can learn more about mobility technology by taking part in research. This can help them find out what types of technology are available and get practice using it. For example, at CREATE, we have done studies on how kids with Down syndrome move and explore, how young kids learn to use powered mobility devices, and how families use adapted toy cars. Taking part in research is always up to the family. Parents must give permission for their kids to join. Research studies are usually advertised on university websites and at therapy clinics. You can also join a research registry or ask your therapy team for help finding local researchers. Research centers like CREATE partner with people with disabilities and families to find out what research is most important to them.

In conclusion, being able to move around on your own is a basic human right. It is also really important for kids’ development and social life, no matter how they do it! Mobility technology can help children with disabilities, but it can be hard for families to get. Trying out equipment through therapy providers or lending libraries, buying equipment, or taking part in research can all help your child experience the benefits of mobility technology. These benefits can help your child grow, make friends, and take part in things.

References and Additional Resources:

Sabet, A., Feldner, H., Tucker, J., Logan, S. W., & Galloway, J. C. (2022). ON time mobility: Advocating for mobility equity. Pediatric Physical Therapy, 34(4), 546-550.

Feldner, H. A., Logan, S. W., & Galloway, J. C. (2016). Why the time is right for a radical paradigm shift in early powered mobility: the role of powered mobility technology devices, policy and stakeholders. Disability and Rehabilitation: Assistive Technology, 11(2), 89-102.

UNICEF Assistive Products and Inclusive Supplies

Family Information Guide to Assistive Technology

Oregon Family to Family Health Information Center – Wheelchairs for Children and Youth. Safe and Practical Options that Support Dignity and Community Inclusion

Washington State Department of Social and Health Services – Assistive Technology Services

Center for Research and Education on Accessible Technology and Experiences CREATE

Back To School Checklist!

Posted on by Nicol Walsh

Late summer is the time to gather school supplies, find out what time the school bus will pick up and drop off, and prepare to find new classrooms and meet new teachers. Parents of students with disabilities have some additional things to check off the list to be ready for the year ahead. As August is National Immunization Month, we are adding updated immunizations and flu and covid boosters to the reminders. These are fully covered medical expenses whether you have insurance or not and can go a long way to keeping your child and your family healthy as we move into the fall and winter months. There are multiple events across our state where families can go to for immunizations.  

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

If you are new to Washington State, perhaps because of military service, you also may want to review some basic information about how education and special education are structured and delivered here. PAVE provides an article: Help for Military Families: Tips to Navigate Special Education Process in Washington State. 

Here’s a checklist to help you get organized:

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

Below is an infographic of the above information.

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

Back to School Checklist click to find the accessible PDF

Click to access an accessible PDF of the infographic above

Supplemental Security Income (SSI)

Posted on by Nicol Walsh

A Brief Overview

  • Supplemental Security Income (SSI) is a monthly financial payment made to persons meeting specific eligibility requirements defined by the Social Security Administration (SSA).
  • A person may be eligible for SSI if they are aged, blind or disabled; have limited income and resources; and are a citizen or resident of the United States.
  • SSI is different from Social Security Disability Insurance (SSDI), which is an insurance that workers earn by paying into taxes on their earnings.
  • There is a special rule that allows dependent children of military families serving on overseas assignments to begin or continue receiving SSI benefits while outside of the United States.

Full Article

What Is SSI?

Supplemental Security Income (SSI) is a monthly financial benefit from the Social Security Administration (SSA) to people with limited income and resources who are age 65 or older, blind or disabled.  Blind or disabled children, as well as adults, can get SSI.

Eligibility Requirements

To be eligible for SSI, a person must meet specific eligibility criteria, including:

  • SSA definitions of aged, blind, or disabled
  • Having limited income and resources
  • Citizenship or residency status

Aged Determination

A person who is 65 years of age or older may qualify for SSI as “aged” if they also meet the financial determination.

Blind or Disabled Determination

SSA defines “blind” as seeing at a level of 20/200 or less in the better eye with glasses or contacts, or having a limited field of vision that can only see things at within a 20-degree angle or less in the better eye.  A person with a visual impairment that does not meet the criteria for blindness may still qualify for SSI based on the disability.

An adult or child may qualify for SSI as “disabled” if they have a physical or mental impairment that can be medically diagnosed through clinical and laboratory diagnostic techniques for anatomical, physiological, and psychological irregularities. The condition must cause marked and severe functional limitations, including emotional or learning challenges, that have lasted or are supposed to last for at least 12 months without interruption.

A person aged 18 or older must qualify as an adult, which includes proving they are unable to do substantial gainful activity.  Two (2) months before a child receiving SSI benefits turns 18, SSA will conduct a disability redetermination to determine whether the child meets the adult criteria to continue receiving SSI payments.

Eligibility for disability is determined by a team that includes a disability examiner and a medical or psychological consultant at a state agency known as the Disability Determination Service (DDS).  The team will review medical and financial documents, and determine eligibility based on the documents provided or request more documents be provided.

It is necessary to complete both disability and financial determinations when assessing eligibility. This is because SSI eligibility determination may be used in other programs within your state. 

Limited Income and Resources

SSI is a needs-based program. In order to receive SSI, the applicant must have limited income and resources.

If the applicant has too much income, their application will be denied, and they will be ineligible for SSI payments. A child does not earn income so part of their parent’s income will be attributed to the child. Different sources of income are treated differently and some have greater exclusions than others. When an adult applies on behalf of a child, the parent or guardian’s income is considered “deemed” income to the child. SSA will prorate the adult’s income among the family members to determine the amount applicable to the child.

If you received SSI in another state, be aware that some states have a higher income limit that allows an individual to receive SSI benefits despite being over the federally established income limits. Washington is not a state with a higher income limit and applications submitted in Washington state must meet the federal income limits.

Resources include both money (e.g., cash, bank accounts, Certificates of Deposit, stocks and bonds, investment accounts, life insurance) and property (e.g. vehicles, houses, real estate) that could be sold or converted to cash to pay for food or shelter. There are limits for how much an applicant may have in resources and maintain eligibility for SSI:

  • An individual may have up to $2,000
  • A couple may have up to $3,000
  • When applying on behalf of a child, an adult may have an additional $2,000 in resources and a portion of the adult’s resources may be applied to the child

Some resources are excluded from the eligibility determination, including:

  • Your house and the property you live on
  • The first vehicle (per household)
  • Most personal and household belongings
  • Property that can’t be used or sold for income
  • Up to $100,000 saved in an ABLE account
  • Properly distributed funds from a special needs trust (SNT) on behalf of the individual with a disability

Citizenship or Residency Status

SSI is only available to U.S. citizens and nations residing in the United States or the Northern Mariana Islands, and qualifying non-citizens with certain alien classifications granted by the Department of Homeland Security (DHS).  SSI benefits will stop if a person leaves the U.S. for a full calendar month or at least thirty (30) consecutive days, with the exception of dependent children of active duty servicemembers serving overseas.

Is SSI The Same As SSDI?

Supplemental Security Income (SSI) is not the same thing as Social Security Disability Insurance (SSDI).  SSI is a needs-based public assistance program for children and adults. The eligibility criteria include limited income and resources. SSI payments come from the general funds of the U.S. Treasury from tax revenues.

SSDI is an insurance that workers earn by paying into the Social Security through taxes on their work earnings. It is not affected by income or resources. In order to receive SSDI, the person must have worked and paid from their earnings into the Social Security trust funds in the U.S. Treasury.

How Do I Apply For SSI?

Family to Family Health Information Center (F2FHIC), a program of PAVE, provides technical assistance, information, and training to families of children, youth, and adults with special healthcare needs. The F2F website contains invaluable information and resources to help family members, self-advocates, and professionals navigate complex health systems and public benefits, including SSI. After reviewing F2F’s article about how to apply for SSI, if you have questions and would like to speak with an F2F team member, please submit a Help Request.

Special Consideration For Military Families Overseas

A special rule allows dependent children of military families serving on overseas assignments to begin or continue receiving SSI benefits while outside of the United States. The child must be:

  • is a U.S. citizen
  • living with a parent who is a member of the U.S. Armed Forces assigned to permanent duty ashore outside the United States
  • listed in the Command sponsorship orders.

If the child is receiving SSI benefits before moving overseas with the active duty service member, the benefits will continue based on the rate of the state in which they applied. If the child is born overseas or becomes eligible for SSI while overseas, you can apply for SSI by contacting the Federal Benefits Unit at the nearest U.S. Embassy or Consular Office, or by applying online. For additional support with your application, call SSA at 1-800-772-1213 (TTY 1-800-325-0778).

Once the child turns 18, they will no longer be eligible for SSI until they have been living within the United States for thirty (30) consecutive days and will be subject to the disability redetermination process.

When relocating on military orders overseas, you must report:

  • the servicemember’s expected report date to the duty station overseas
  • the child’s expected date of arrival at the overseas location
  • the mailing address at your new duty station
  • changes in military allowances at your new duty station

Additional Resources

LGBTQ+ and Disability Rights in School

Posted on by Nicol Walsh

A Brief Overview

  • Youth and young adults with disabilities may also have diverse sexualities and gender identities.
  • Students can experience discrimination based on disability, and face discrimination based on sexual orientation, gender identity, and gender expression.
  • LGBTQ+ is an acronym that stands for lesbian, gay, bisexual, transgender, queer (or sometimes questioning), and others. The “plus” represents other gender identities including pansexual and Two-Spirit.
  • LGBTQ identities are NOT disabilities, but students with disabilities
  • may also be LGBTQ+.
  • LGBTQ+ youth with disabilities report high rates of harassment and are more likely to be bullied or harassed than students without disabilities.
  • Race, ethnicity, nationality, disability, sexual orientation, gender identity, and gender expression are all protected classes under Washington law.
  • PAVE’s Parent Training and Information (PTI) staff help families understand and navigate service systems for children 0-26. Click Get Help on the PAVE website or call 800-572-7368.

Full Article

LGBTQ+ is an acronym that stands for lesbian, gay, bisexual, transgender, queer (or sometimes questioning), and others. The “plus” represents other gender identities including pansexual and Two-Spirit.

Youth and young adults with disabilities may also have diverse sexualities and gender identities. LGBTQ+ identities are NOT disabilities, but students with disabilities may also be LGBTQ+. The prevalence of disability among LGBQT+ youth is not clear, but research is emerging. The Human Rights Campaign (HRC) Foundation 2018 LGBTQ+ Youth Report surveyed over 12,000 LGBTQ+ youth aged 13-17 from across the United States. One in seven (15%) LGBTQ+ youth said they had a disability. A 2020 Trevor Project survey found that 5% of LGBTQ+ reported having deafness or a hearing disability, whereas a 2021 Trevor Project survey found that 5% of LGBTQ+ youth were diagnosed with autism.

Discrimination often refers to a person or a group of people being treated differently because they belong to a protected class. According to the HRC, “For LGBTQ+ youth with a disability, stigma associated with their intersecting identities places them at even more risk for bullying and harassment. More than one-third (36%) of disabled LGBTQ+ students say they have been bullied or harassed in school because of their disability, while three in ten (30%) say they have felt unsafe at school because of their disability.”

Washington is one of only 19 states that explicitly protects LGBTQ+ students in public schools from discrimination based on sexual orientation, gender identity, and gender expression. Washington also has laws to protect students from discrimination based on disability.

Effective January 31, 2020, all districts in Washington must have a policy and procedure that includes all elements of Washington Association School Board Directors Association (WSSDA) model policy for gender inclusive schools and procedure (numbered 3211 and 3211P, respectively). Gender-inclusive schools benefit all students, help to equalize student experiences and outcomes; and prioritize student health, safety, and wellbeing.

The HRC, National Association of School Psychologists, National Association of Secondary School Principals, National Center for Lesbian Rights, and the National Education Association produced a Guide for Educators and Parents/Guardians on Supporting LGBTQ Students with an IEP or 504 Plan. This guide emphasizes that “Ideally, students should be allowed access to needed resources, services, restrooms and locker rooms without such access being written into a Section 504 Plan or IEP, but there are times when including specific provisions about equal access may be necessary to ensure that students are able to access school programs and facilities and benefit from classroom instruction.”

If you are concerned about your child’s rights in school:

Additional Resources:

Resources for LGBTQ+ People Living with Disabilities:

Myth and Misunderstanding in Special Education

Posted on by Nicol Walsh

A Brief Overview

  • Everyone has moments when they hear something and pause to wonder, Is that true? This article and its companion videos describe some special education topics that may be misunderstood. Included is an explanation of what is fact.
  • Topics relate to special education eligibility, placement, support personnel, bullying, student discipline, and more.
  • Read on to see if there are things you haven’t quite understood about your student’s rights or educational services. PAVE hopes to empower families with information to make sure students with disabilities have their best chance for an appropriate and meaningful education.
  • The final myth described in this article is that PAVE provides advocacy on behalf of families—we don’t! But we can help you learn to be your child’s most important advocate. Click Get Help at wapave.org to request 1:1 assistance.

Full Article

Everyone has moments when they hear something and pause to wonder, Is that true?

Parents/caregivers in meetings with their child’s school can feel particularly confused when something doesn’t sound right. They might wonder whether it’s appropriate to question school authorities. They might not understand all the words being spoken. Fear of not knowing something can make it uncomfortable to speak up.

At PAVE, we encourage families to ask questions and make sure they understand the words school staff use. Ask for important answers in writing, and plan to research explanations that are confusing.

For example, if you ask for something and the school says no because of a law or policy, ask for a written copy of the relevant parts of that law or policy. Try to understand the school’s reason for saying no. Write down what you understand and send a reflective email to school staff to make sure you understand their position correctly.

Having everything in writing is important, especially if filing a complaint is a possible next step.

This article describes myths and misunderstandings some people might experience when navigating school-based services for students with disabilities. These topics apply to students with Individualized Education Programs (IEPs), students with Section 504 Plans, and students with possible disability conditions impacting their educational access.

Parent Participation

MYTH: The school must hold a meeting without a parent if the parent is unavailable before an annual renewal deadline because the student’s IEP, 504 Plan, or eligibility will expire or lapse.
FACT: Parent participation is a higher priority than deadlines. Schools are required to accommodate parents/caregivers to ensure their attendance and participation at meetings where their child’s special education services are discussed. Those rights are affirmed in a court decision from 2013: Doug C. Versus Hawaii. If a meeting is delayed because a family member is temporarily unavailable because of illness, work, travel, or something else, services continue uninterrupted until the meeting. PAVE provies an article: Parent Participation in Special Education Process is a Priority Under Federal Law.

Evaluation

MYTH: The school is not required to evaluate a student who gets passing grades.
FACT: If there is a known or suspected disability condition that may be significantly impacting a student’s access to any part of their education—academic, social-emotional, behavioral, or something else—then the school district is responsible under Child Find to evaluate the student to determine eligibility for services and support. Child Find is an aspect of federal law, the Individuals with Disabilities Education Act (IDEA).

MYTH: Section 504 doesn’t apply for a student without a plan or program.
FACT: Section 504, which is part of the federal Rehabilitation Act of 1973, includes protections for students with suspected or known disability conditions that warrant evaluation. For example, if a student consistently misses school for reasons that may be connected to disability, the school may be accountable under the civil rights protections of Section 504 if an evaluation referral isn’t initiated.

MYTH: Section 504 eligibility does not involve an evaluation.
FACT: An evaluation process is required to determine whether a student has a disability condition impacting a major life activity. That evaluation process may include a review of grades, test scores, attendance, health room visits, parent and student input, teacher observations, medical or psychological evaluations, special education data, medical information, and more. If the student meets criteria, evaluation documents are used to support the design of accommodations and other individualized supports to ensure equity. The state provides a family-friendly handout, downloadable in multiple languages, to describe 504 eligibility, evaluation process, plan development, and civil rights complaint options.

Medical Diagnosis

MYTH: A student cannot be identified as eligible for services under the autism category unless they have a medical diagnosis of autism.
FACT: If there is a suspected disability condition and reason to believe there is a significant educational impact, the school is responsible under Child Find to evaluate the student to determine eligibility for services. Schools have evaluation tools to determine characteristics of autism, its possible educational impacts, and student needs. Medical information might help an IEP team design interventions, but families are not required to share medical information with the school, a medical diagnosis is not required, and doctors may not “prescribe” an IEP.

Placement

MYTH: Special Education is a location within the school.
FACT: Special Education is a Service, Not a Place, and PAVE provides an article by that title to further explain a student’s right to educational services in general education—the Least Restrictive Environment (LRE)—to the maximum extent appropriate.

MYTH: The school district is in charge of placement decisions.
FACT: The IEP team determines a student’s placement. If placement in general education, with support, is not meeting the student’s needs, the IEP team is responsible to locate or design a placement that best supports the student in accessing their Free Appropriate Public Education (FAPE). Placement might be general education, a segregated classroom setting where special education services are provided, day treatment, alternative learning environment, residential, home-based, something else, or a combination of any of these options. Once an IEP team designs a placement, the school district has some leverage in choosing a location. For example, if an elementary-age student who is struggling to read needs individualized services from a reading specialist, the district might bus them to a school in another neighborhood where a specially trained teacher provides reading instruction in a smaller classroom. The district doesn’t have to offer every placement or service within every building, but it does need to serve the IEP as written by the IEP team.

MYTH: Preschool IEPs are not required to serve students in the Least Restrictive Environment to the maximum extent appropriate.
FACT: An IEP is required to serve a student with a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE), to the maximum extent appropriate, regardless of age or grade level. WAC 392-172A-02050 provides specific language about state requirements for LRE, including for preschool students.

Adult Aids at School

MYTH: A 1:1 creates a “restrictive environment” for a special education student.
FACT: Least Restrictive Environment (LRE) refers to placement. A helper is an aid, not a placement. Supplementary aids and services, including 1:1 support from an adult staff member, may support access to the Least Restrictive Environment (LRE) for some students. If having a 1:1 enables a student to appropriately access learning in the general education setting, then that support is provided to ensure FAPE (Free Appropriate Public Education). FAPE within LRE is required by federal special education law, the Individuals with Disabilities Education Act (IDEA).

MYTH: Support personnel should regularly rotate in their roles to ensure a student does not become “dependent” on specific individuals or relationships.
FACT: Healthy interpersonal relationships enable humans of any age to feel safe and secure. Because of the way our brains work, a person doesn’t learn well when a fight/flight nervous system response is activated. Connecting to trusted adults and receiving consistent help from safe, supportive people enhances learning. PAVE provides a collection of articles about Social Emotional Learning (SEL) and Washington State’s SEL Standards.

Section 504

MYTH: A 504 Plan is a watered down IEP.
FACT: Section 504 is part of a civil rights law called the Rehabilitation Act, passed by the US Congress in 1973. The anti-discrimination protections of Section 504 apply to any person identified as having a disability condition that impacts their life in a significant way. Public agencies, including schools, are responsible to provide individualized accommodations and support to enable the person with a disability to access the service, program, or building in a way that affords them an equitable chance to benefit from the opportunity. A 504 Plan at school ensures the right to a Free Appropriate Public Education (FAPE). Section 504 FAPE rights are upheld by the US Department of Education’s Office for Civil Rights. PAVE provides a video series: Student Rights, IEP, Section 504 and More.

MYTH: Section 504 doesn’t apply to a student with an IEP
FACT: Section 504 protections apply to students with IEPs and those with Section 504 Plans. The civil rights protections of Section 504 are threaded throughout the IEP, especially within sections that describe accommodations and modifications. Section 504 includes specific provisions to ensure students are not discriminated against within student discipline, by unmitigated bullying, or through denial of support that is needed for access to what non-disabled students access without support. All aspects of school are protected, including athletic events, field trips, enrichment activities, specialized learning academies, and more—everything the school is offering to all students. PAVE provides a comprehensive article about Section 504 and its protections for all students with disabilities.

MYTH: If the student has found ways to cope with their disability, they don’t need support.
FACT: Section 504 forbids schools from using “mitigating measures” to justify denial of evaluation or support. A mitigating measure is a coping mechanism—for example, a deaf student who reads lips or a student with an attention deficit whose symptoms are improved by medication. PAVE’s article about Section 504 provides more detail about mitigating measures.

Bullying

MYTH: The best way to help a student with a disability who is being bullied is to remove them from the bully’s classroom.
FACT: Section 504 protects a student with disabilities in their right to be protected from bullying. That means the school must stop the bullying and support the victim to feel safe again. Schools may not punish or disadvantage the victim. OCR says: “Any remedy should not burden the student who has been bullied.” PAVE provides a video: Bullying at School: Key Points for Families and Students with Disabilities.

MYTH: An informal conversation is the best way to address bullying.
FACT: The best way to hold a school accountable to stop bullying and support the victim is to file a formal HIB Complaint. HIB stands for Harassment, Intimidation, and Bullying. Washington State’s 2019 Legislature passed a law that requires school districts to write formal HIB policies and appoint a HIB Compliance Officer to spread awareness and uphold the laws. Families can contact their district’s HIB Compliance Officer for support with a complaint and to ensure student civil rights are upheld.

IEP Goals and Process

MYTH: An IEP provides education to a student with a disability.
FACT: An IEP is not the student’s education. An IEP provides educational services to enable a student to access their education. IEP goals target areas of learning that need support in order for the student to move toward grade-level curriculum and learning standards. Included are services for academics, adaptive skills, social-emotional skills, behavior—all areas of learning that are impacted by disability.

MYTH: If an IEP team agrees to change something about a student’s services or placement, the team must submit that idea to the district for approval or denial.
FACT: An IEP team has decision-making authority. The team is required to include a person knowledgeable about district resources (WAC 392-172A-03095) so decisions about program and placement can be made at the meeting. If a required IEP team member is not in attendance, the family participant must sign consent for the absence. The family can request a new meeting because a key team member, such as a district representative, is missing. PAVE provides more information and a Sample Letter to Request an IEP meeting.

Behavior and Discipline

MYTH: A Functional Behavioral Assessment (FBA) is used to figure out how to discipline a student more effectively.
FACT: An FBA is an evaluation focused on behavior. It helps IEP teams understand the needs behind the student’s behavior. A Behavior Intervention Plan (BIP) is built from the FBA to provide positive behavioral supports, teach new or missing skills, and reduce the need for discipline. PAVE provides a video about the FBA/BIP process.

MYTH: A school isn’t responsible to track exclusionary discipline if a parent agrees to take the child home and no paperwork is filed when the school calls to report a behavior incident.
FACT: “Off books” or informal suspensions count as exclusionary discipline for students with disabilities. If a student with a disability misses more than 10 cumulative days of school because of their behavior, the school is responsible to hold a manifestation determination meeting to decide whether the behaviors are directly connected to the disability and whether school staff are following the IEP and/or behavior plan. If services or placement need to change, this formal meeting is a key opportunity to make those changes. PAVE provides a video: Discipline and Disability Rights: What to do if Your Child is Being Sent Home.

Privacy

MYTH: A parent or provider who visits school to support or evaluate an individual student is violating the privacy rights of other students just by being there.
FACT: Federal laws protect private medical or educational records. Visiting a classroom or other school space should not expose student records for inappropriate viewing. The Department of Education provides a website page called Protecting Student Privacy to share resources and technical assistance on topics related to the Family Educational Rights and Privacy Act (FERPA). The confidentiality of medical records is protected by the Health Insurance Portability and Accountability Act (HIPAA). Understanding HIPAA and FERPA can help parents /caregivers ask their school for documented explanations whenever these laws are cited as reasons for a request being denied.

Literacy

MYTH: Schools cannot provide individualized instruction in reading through a student’s IEP unless the student is diagnosed by a medical provider as having dyslexia.
FACT: No medical diagnosis is needed for a school to evaluate a student for any suspected disability that may impact access to learning and school. An educational evaluation might show that a student has a Specific Learning Disability in reading, with characteristics of dyslexia. When a disability that impacts education is identified through evaluation, the school is responsible to provide services to meet the identified needs and enable appropriate progress. PAVE provides an article: Dyslexia Screening and Interventions: State Requirements and Resources and a video: Supporting Literacy for Students with Learning Disabilities.

Graduation

MYTH: The school has to withhold credits for a student to receive services beyond a traditional senior year.
FACT: Credits do not need to be withheld, and a student doesn’t automatically earn a diploma by reaching the required number of credits. The IEP team determines the target graduation date for a student receiving services through an IEP and how transition programming for a student ages 18-21 might support learning and life planning. Receiving the required number of credits is only part of what a student needs to earn a diploma, and the IEP team individualizes a plan for the student with a disability to earn their diploma within the state’s options for graduation pathways. PAVE provides a Toolkit for life after high school planning.

Private School and Home School

MYTH: Public schools do not have to do anything for students with disabilities who are home schooled or enrolled in private schools by parent choice.
FACT: Child Find applies to all students with known or suspected disabilities who live within a district’s boundaries, including those who are home schooled or enrolled in private schools. Child Find means the public district is responsible to seek out and evaluate all students with known or suspected disabilities. If the student is found eligible for services, parents/caregivers can choose to enroll the student in the public school to receive special education services, even if the primary educational setting is a private or home placement. If the student is fully educated in the private setting, by parent choice, the private school provides equitable services.

Parent Support from PAVE

MYTH: PAVE gives the best advice and advocates on behalf of families.
FACT: PAVE does not give legal advice or provide advocacy. We support families in their work.  Staff from our Parent Training and Information (PTI) program provide information and resources to empower family advocates. Our goal is to ensure that family advocates have knowledge, understand options, and possess tools they need to work with schools to ensure that student rights are upheld and the needs of students with disabilities are met. Click Get Help at wapave.org to request 1:1 assistance. Help us help you by reading your student’s educational documents and having those documents handy when you connect with us!

Surrogate Parents Support Unaccompanied Students in Special Education

Posted on by Nicol Walsh

A Brief Overview

  • Parent participation in IEP process is a protected right for students with disabilities. If a student doesn’t have a family caregiver or legal guardian to advocate in their behalf, a surrogate parent is assigned to fill that role.
  • A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child.
  • The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).

Full Article

If a student eligible for special education services does not have a family caregiver, adoptive parent, or other legal guardian fulfilling the role of parent, then a surrogate parent is assigned to ensure the student’s rights are protected. The surrogate parent fulfills the family caregiver role on a student’s Individualized Education Program (IEP) team and advocates to ensure the student’s needs are met.

A surrogate parent is an individual appointed by the public agency (usually a school district) responsible for the student’s special education services. Schools are responsible to assign a surrogate parent within 30 days after recognizing the need. Note that a child who is a ward of the state may be assigned a surrogate parent by the judge overseeing their case.

If a private individual, such as a neighbor or friend, has explicit written permission from the student’s parent or guardian to care for the student, a surrogate parent is not required.

A student 18-21 is responsible for their own educational decision-making unless they have a guardian to exercise their legal rights. A school district is responsible to assign a surrogate parent for a student declared legally incompetent or if an adult student with a disability asks for a surrogate parent.

A surrogate parent is required for a minor student when the parent cannot be identified or located or if parental rights have been terminated. A student’s parents are considered to be unknown if their identity cannot be determined from a thorough review of the student’s educational and other agency records.

A student’s parents are considered unavailable if they cannot be located through reasonable effort that includes documented telephone calls, letters, certified letters with return receipts, visits to the parents’ last known address, or if a court order has terminated parental rights. A parent is also considered unavailable if unable to participate in the student’s education due to distance or incarceration.

If a parent is too ill to participate at a meeting, either in person or by phone, that parent has the option of giving another individual written permission to act for them.

An uncooperative or uninvolved parent is not the same as an unavailable one.  A surrogate parent is not assigned because parents choose not to participate in their child’s education.

A child identified as an unaccompanied homeless youth by the McKinney-Vento Homeless Assistance Act is an example of a student who would be assigned a surrogate parent to support them within the special education system. Children with surrogate parents might live in foster homes, nursing homes, public or private group homes, state hospitals, or correctional facilities.

In some cases, a state agency has guardianship of a student with a disability: That student requires the assignment of a surrogate parent. 

Foster parents need to be formally appointed by the school as surrogate parents if they do not have legal guardianship. Relatives without formal kinship rights also can be designated as surrogate parents within the special education process.

A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child. However, an unaccompanied homeless youth may be supported by appropriate staff from an emergency shelter, street outreach team, or other agency temporarily until a surrogate parent with no conflict of interest is appointed.

A surrogate parent must have knowledge and skills that ensure adequate representation of the student. A community volunteer, guardian ad litem, or other invested adult might serve as a surrogate parent. The surrogate parent must commit to understanding the student’s strengths and needs and how the educational system is structured to support the student’s services. Ideally, the surrogate parent lives near the student and is a match for providing culturally appropriate help in the student’s language.

The surrogate parent represents the student in all matters relating to special education identification, evaluation, and placement and works to ensure that the student receives a Free Appropriate Public Education (FAPE) from their school-based services.

The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).

Washington’s Office of Superintendent of Public Instruction (OSPI) includes some downloadable resources about the surrogate parent in its Special Education Resource Library.

PAVE is here to help all caregivers, including surrogate parents. For direct assistance, click Get Help to complete an online Help Request Form.