Tag: family support

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.

Transition Triangle

Posted on by Nicol Walsh
The transition triangle talks about the relationship between the High School and Beyond Plan , the IEP transition plan and Agency supports from DDA, DVR and DSB. within that triangle of support is the student asking themselves: Who they are, what is their future and their goals.

The planning process to support a student with disabilities toward their adult life plans requires coordination and organization. This graphic provides a visual overview of the work and who is responsible to help.

The center upside down triangle describes key questions for a student as they move through school and toward adulthood:

  1. Who am I? Answers include what the student is interested in, what they are good at, what they struggle with, and how they see themselves.
  2. What’s my future? Students can begin to imagine where they might work, whether higher education will be part of their future, and how they might live.
  3. How do I reach my goals? The answers are a long-term project. A good planning process ensures that work done today is moving the student toward their vision for adult life.

The three colored triangles on the corners of the graphic represent three tools that help students ask and answer these questions.

The purple triangle on the bottom left represents the High School and Beyond Plan. Washington State requires schools to begin supporting all students with a High School and Beyond Plan before they leave middle school. The plan includes questions to help the student think about where they might work someday and how much education they will need to get that job. The plan is designed to make sure time spent in school is moving the student toward adult goals. The High School and Beyond Plan addresses the same questions that are listed in the center of our triangle and is often managed by staff in a school’s counseling center.

The blue triangle on the bottom right represents the transition plan, which is required in a student’s Individualized Education Program (IEP) by the school year when they turn 16. Goals in the IEP Transition Plan include further education/training, employment, and independent living as parts of a student’s program. A student with disabilities has the right to a Free Appropriate Public Education (FAPE) until they earn a diploma or turn 21. The IEP includes a target graduation date, determined by the IEP team. The state requires the IEP Transition Plan to align with the High School and Beyond Plan. School staff and the family collaborate to make sure these two tools match up to best support a student’s progress.

The teal triangle on top of the pyramid represents agencies that might provide Vocational Rehabilitation (VR) services. The Developmental Disabilities Administration (DDA) has a variety of school-to-work programs for eligible students: A DDA case manager can provide information about options. The Division of Vocational Rehabilitation (DVR) provides Pre-Employment Transition Services (Pre-ETS) for students still in school as well as vocational rehabilitation services for adults with disabilities. As they transition out of school, members of some Native American tribes may access Tribal Vocational Rehabilitation (TVR) services. The Department of Services for the Blind (DSB) is a separate agency providing Pre-ETS for youth and vocational rehabilitation services for individuals who are blind or low vision. Staff from these agencies may work with an IEP team and counselors at school to make sure everyone is working together to support the student in the center.

Ideally a student with disabilities has people supporting all of the features on this transition triangle. Best practice is for all agencies and supporters to collaborate as they help a student move toward a successful adult life.

PAVE has made a fillable worksheet to help you answer these questions.

Key Questions for Self-Determination and Future Planning Fillable worksheet.
Download the Transition Triangle Worksheet

In addition, PAVE has a college readiness workbook ready for you to use. For direct assistance from PAVE, click Get Help. The Office of Superintendent of Public Instruction (OSPI) provides information about graduation requirements for a student in Washington State

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

IEP Tips: Evaluation, Present Levels, SMART goals

Posted on by Nicol Walsh
Download IEP Tips and SMART Goals as a fillable PDF!

Getting services at school starts with evaluation. Eligible students get an individualized Education Program (IEP), which describes a student’s present levels of performance and how specially designed instruction supports progress toward annual goals.

This article provides a quick overview of the basic IEP process and provides tips for family caregivers to get more involved. PAVE offers a fillable worksheet to assist parents in developing suggestions to share with the IEP team.

Step 1: Evaluate

To determine eligibility for special education, the school district collects data to answer 3 primary questions:

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

If the answer to all three questions is ‘Yes’, the student qualifies for an Individualized Education Program (IEP).

If the answer to any of the three questions is ‘No’, the student may be eligible for support through a Section 504 Plan.

TIP: Does the data being collected capture information in all areas of concern? District special education staff can provide input if more specialized evaluation tools are needed.

Step 2: Write the Present Levels of Performance (PLOP)

(Also referred to Present Levels of Educational Performance (PLEP)

When an IEP is drafted, information from the evaluation transfers to the present levels of academic achievement and functional performance (PLOP for short). Students, family members, and outside providers may contribute additional information. There are required elements, depending on age:

  • Preschool: how disability affects participation in appropriate activities within the natural environment​
  • School-age: how disability affects involvement and progress in general education​

​​TIP: Does the PLOP list talents and skills to encourage a strength-based IEP? This section of the IEP can describe how teaching strategies support a student and create opportunities for progress toward goals.

Step 3: Write Goals to Measure Effectiveness of Specially Designed Instruction (SDI)

Goals are written for each area of SDI that a student is eligible to receive. Remember that the 3-part evaluation determines whether SDI is needed. Evaluation, PLOP, and goals are tied to the same data points.

TIP: Here are some questions to consider when reading/writing goals with the IEP team:

  • Are a student’s natural talents and curiosity described and appreciated as part of goal setting?
  • What is the SDI to support the goal, and why is it a good approach or strategy for this learner?
  • Are goals providing opportunity for appropriate progress, given the child’s circumstances?
  • Do the goals properly address the concerns revealed through evaluation and explained in the PLOP?
  • Can the students use their own words to describe IEP goals and how they are making progress? Student goal-tracking worksheets are readily available online.
  • Is the goal SMART: Specific, Measurable, Achievable, Relevant, Time-Bound?

Grid for Goal Development

In accordance with the Individuals with Disabilities Education Act (IDEA), an IEP goal is reasonably calculated to enable a child to make progress appropriately, in light of the child’s circumstances. Parents/students have the right to participate in goal setting and progress monitoring.

These points can be used to design a grid to outline goal setting and to note whether written goals are SMART. A downloadable PDF shows these points in a grid format. A family participant on an IEP team can draft rewritten or proposed goals for the IEP team to consider. Submitting those suggestions to IEP team members before a meeting might help ensure that a parent’s suggestions are a critical part of the agenda.

  • Challenge: Identify the learning barrier/issue.
  • Skill: What needs to be learned?
  • SDI (Specially Designed Instruction): What is the teaching strategy?
  • SMART Goal: Yes/No? Use the following questions to determine whether the goals need improving.

Review whether IEP Goals are SMART:

  • Specific: Is the targeted skill clearly named or described? How will it be taught?
  • Measurable: How will progress toward the goal be observed or measured?
  • Achievable: Is a goal toward this skill realistic for the student, considering current abilities?
  • Relevant: Is the skill something that is useful and necessary for the student’s success in school and life?
  • Time-Bound: What specific date is set to determine whether the goal is met?

Learn more about SMART Goals in this short video:

Download IEP Tips and SMART Goals as a fillable PDF!

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 

Early Learning Toolkit: Overview of Services for Families of Young Children

Posted on by Nicol Walsh
Download the Early Learning Toolkit
Complete Ages 3-5 Transition Toolkit

Presenting our newest resource – the 3-5 Transition Toolkit – A guide to Washington services for 3-5 year olds with disabilities. This toolkit encompasses a collection of our informative articles, complemented by sample letters to provide you with a solid foundation as you navigate through this crucial transition period.

New parents have a lot to manage. Concern about whether a child’s growth and development are on track can be confusing. This toolkit provides places to begin if caregivers suspect that a baby or young child may need services due to a developmental delay or disability.

How do I know if my child is developmentally delayed?

Washington families concerned about a child’s development can call the Family Health Hotline at 1-800-322-2588 (TTY 1.800.833.6384) to connect with a Family Resource Coordinator (FRC). Support is provided in English, Spanish and other languages. Families can access developmental screening online for free at Parent Help 123 developmental screening tool.

In addition, 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, from birth through third grade. Families can purchase a hard copy of the guidelines from the state Department of Enterprise Services. Order at: myprint.wa.gov. A free downloadable version is available in English and Spanish from the website of the Office of Superintendent of Public Instruction (OSPI): Early Learning and Development Guidelines.

The Centers for Disease Control and Prevention (CDC) manages a campaign to Learn the Signs. Act Early. The website includes tools for tracking milestones and materials for families to learn more and plan home-based activities to promote skill development.

Birth-3 services are provided by ESIT

In Washington, the Department of Children, Youth and Families (DCYF) administers services for eligible children from birth to age 3 through Early Support for Infants and Toddlers (ESIT). Families can contact ESIT directly, or they can reach out to their local school district to request an evaluation to determine eligibility and consider what support a child might need. ESIT provides information on a page called Parent Rights and Leadership, with procedural safeguards described in a brochure that can be downloaded in multiple languages.

Evaluation determines eligibility

After a referral is accepted, a team of professionals uses standardized tools and observations to evaluate a young child’s development in five areas:

·       Physical: Reaching for and grasping toys, crawling, walking, jumping

·       Cognitive: Watching activities, following simple directions, problem-solving

·       Social-emotional: Making needs known, initiating games, starting to take turns

·       Communication: Vocalizing, babbling, using two- to three-word phrases

·       Adaptive: Holding a bottle, eating with fingers, getting dressed

Services are provided through an IFSP

Children who qualify receive services through an Individualized Family Service Plan (IFSP). Early learning programs are designed to enable success in the child’s natural environment (home, daycare, etc.), which is where the child would be if disability was not a factor. PAVE provides more information in an article and a two-part video series: 

 IDEA includes three parts

The federal law that protects children with disabilities and creates a funding source for services to meet their individualized needs is the Individuals with Disabilities Education Act (IDEA).

  1. Part A includes general guidance about the rights of children 0-21 with disabilities.
  2. Part B protects eligible students ages 3-21 with the right to school-based services delivered through an Individualized Education Program (IEP).
  3. Part C guarantees the right to early intervention services for children Birth-3 who meet eligibility criteria.

PAVE provides an overview article about the federal law and its primary features: IDEA: The Foundation of Special Education.

Child Find protects the right to evaluation

Under IDEA, school districts have the affirmative duty to seek out and evaluate children with known or suspected disabilities who live within their boundaries. That affirmative duty is protected through IDEA’s Child Find Mandate.

Child Find Mandate protects:

  • Children Birth-3 with known or suspected disability conditions that may significantly impact the way they learn and engage within their natural environment
  • Students 3-21 who may be significantly impacted in their ability to access grade-level learning at school because of a known or suspected disability condition

If these criteria are met, the school district in which the child lives has the duty to evaluate to determine eligibility for services. For more information, PAVE provides an article: Child Find: Schools Have a Legal Duty to Evaluate Children Impacted by Disability.

Information for children 3-5 or older

Children with early intervention services are evaluated to determine whether they are eligible for school-based services when they turn 3.

If a child did not receive early intervention services but disability is suspected or shown to impact learning, a family caregiver or anyone with knowledge of a child’s circumstances can request that the school district evaluate a child 3 years or older to determine eligibility for school-based services. PAVE provides information about how to make a formal written request for an educational evaluation: Sample Letter to Request Evaluation.

Preschool children have a right to be included

If eligible, students 3-21 can receive free services through an Individualized Education Program (IEP) served by the local school district. PAVE provides guidance for families new to the process: Steps to Read, Understand, and Develop an Initial IEP.

The Office of Superintendent of Public Instruction (OSPI), provides guidance specific to Early Childhood Special Education. Districts must consider how to include preschool students with non-disabled peers. General education classrooms are considered the Least Restrictive Environment, and LRE is a primary guiding principle of the IDEA.

There are 14 IEP eligibility categories

Students 3-21 may be eligible for IEP services if they meet criteria in a category defined by federal and state regulations. A PAVE article provides more detail about each of these categories and describes the evaluation process: Evaluations Part 1: Where to Start When a Student Needs Special Help at School.

Below is a list of IEP eligibility categories. The Washington Administrative Code (WAC 392-172A-01035) lists state criteria for each category.

Developmental Delay is an eligibility category for Washington students through age 9. At that point, an evaluation would need to show eligibility in one of the other 13 categories for the student to continue receiving IEP services.

Please note that a medical diagnosis is not required for a school district to determine eligibility, which is based on three criteria:

  1. a disability is present
  2. a student’s learning is significantly impacted, and
  3. services are necessary to help the child access appropriate learning.

All three prongs must be present for a student to be eligible for an IEP in one or more of these disability categories:

  • Autism
  • Emotional Disturbance (In Wash., Emotional Behavioral Disability)
  • Specific Learning Disability
  • Other Health Impairment
  • Speech/Language Impairment
  • Multiple Disabilities
  • Intellectual Disability
  • Orthopedic Impairment
  • Hearing Impairment
  • Deafness
  • Deaf blindness
  • Visual Impairment/Blindness
  • Traumatic Brain Injury
  • Developmental Delay (ages 0-9 in Wash.)

Improving Services for All Young Children with Disabilities

The Department of Children Youth and Families, State Interagency Coordinating Council (SICC) ensures interagency coordination and supports the ongoing development of quality statewide services for young children and their families. The Council advises, advocates, and collaborates on state, local and individual levels to maximize each child’s unique potential and ability to participate in society. The Council works to improve the quality of life for children who experience disability and promotes and supports family involvement and family-centered services. If you are interested in becoming a member of the SICC, attending a public meeting, and/or learning more, go to DCYF State Interagency Coordinating Council

PAVE is here to help!

Parent Training and Information (PTI)is federally funded to provide assistance for family caregivers, youth, and professionals. We know educational systems use a lot of complicated words and follow regulated procedures that can feel confusing. We do our best to help school-and-family teams work together so students with disabilities can access their right to a Free Appropriate Public Education (FAPE). Learn more about PTI and click Get Help to receive individualized assistance.

Download the Early Learning Toolkit
Ages 3-5 Transition Toolkit

Exceptional Family Member Program (EFMP), Part 2: How Does EFMP Benefit Military Families?

Posted on by Nicol Walsh
Download the EFMP Enrollment Checklist

A Brief Overview

  • This is part of a two-part series on this topic of the Exceptional Family Member Program (EFMP). This article continues from Part 1: What Makes a Military Family Exceptional?
  • EFMP consists of three parts that work together for identification and enrollment, assignment coordination, and family support.
  • An off-site centralized office within the branch of service determines eligibility for EFMP and level of need.
  • Enrollment should be updated when there is new medical or educational information, and at least every three years.
  • EFMP enrollment ensures the family member’s needs are considered in the assignment process, although the military requirements take priority.
  • EFMP Family Support provides nonmedical case management, information, resources, and support.
  • Beginning in 2023, eligible families may access 20-32 hours of EFMP respite care per month through their branch of service, depending on level of need and availability of services.
  • Get the most from EFMP by contacting the installation’s Family Support office for information, resources, and support.

Full Article

The Exceptional Family Member Program (EFMP) is a mandatory program for all branches of the U.S. Armed Forces that helps military dependents with special medical or educational needs. The Army, Navy, Air Force, Marine Corps, and Space Force each have an Exceptional Family Member Program (EFMP). The Coast Guard, which operates under the authority of the Department of Homeland Security, has a similar program called the Special Needs Program (SNP).

EFMP is made up of three parts that work together to provide:

  1. Identification and Enrollment
  2. Assignment Coordination
  3. Family Support

Identification and Enrollment 

This is the entry point for EFMP. When the service member turns in the enrollment forms, they are sent for processing to an off-site centralized office within the branch that will determine eligibility and the level of need. The decisions are made by medical document reviewers who do not meet or speak with the dependents. Upon completion, the servicemember will receive a letter of verification from the EFMP program for their branch of service.

The same office will determine eligibility for TRICARE’s Extended Care Health Option (ECHO) supplemental medical insurance plan.

EFMP enrollment should be updated anytime the family member has new medical or educational information, and at least every three years.

Assignment Coordination

Once a family member is enrolled in the program, personnel and medical departments coordinate future duty assignments with consideration of the family member’s medical or educational needs. Although the family member’s needs are considered in the assignment process, military requirements take priority for assignment decisions. Orders that accommodate the family member’s needs may include:

  • Accompanied assignment only to locations that have services and resources to support the family member’s medical or educational needs.
  • Unaccompanied assignment, in which the servicemember relocates to the new duty station without the dependents, for a shorter duration than standard duty rotations.

If a service member disagrees with the availability or lack of availability of services at their next duty station, Department of Defense (DoD) Instruction 1315.19 (issued June 2023) provides them up to 14 calendar days from the date of the original assignment notification to request a second review and submit updated medical or educational information. A service being “available” does not mean the family won’t encounter a waiting list for these services, providers who are no longer taking clients or patients, or other interruptions in services.

Families enrolled in EFMP should ensure their paperwork is complete and current before assignment and permanent change of station (PCS) to a new duty station. Get ahead of assignment coordination and allow time for updates to be processed by updating the enrollment forms before the servicemember’s window opens for selecting orders.

Enrollment in EFMP does not prevent the service member from deploying or taking an assignment on unaccompanied orders.

Family Support

This is the department that directly serves families with nonmedical case management and support, including:

  • Information about local military and community programs, services, and supports.
  • Partnering with the School Liaison to provide information about early intervention services, special education, and school-based supports for students with disabilities.
  • Assistance with navigating DoD medical, educational, and counseling systems.
  • Local programs and activities for the benefit of families enrolled in EFMP, such as support groups, classes, and regional or installation events.
  • Warm handoffs to EFMP programs and School Liaisons at the next duty station.

Beginning in 2023, EFMP family support providers are required to personally contact each family assigned to their caseload and every family using the respective service’s respite care program at least once annually.

Find your EFMP enrollment or family support. In the drop-down menu for “Program or service”, select “EFMP Family Support” or “EFMP Enrollment”. Then, select your location from the drop-down menu labeled “Location based on”.

Respite Care

Eligibility requirements for EFMP respite care differ by branch of service and availability of services varies by location. The 2023 DoD Instruction 1315.19 standardized the respite care hours to 20-32 hours per month, across all branches of service, depending upon level of need of the eligible family member. It also extended coverage to include adult dependents and added the opportunity for eligible families to request additional services based on exceptional circumstances.

EFMP respite care is not an entitlement program, but a benefit available only to those who qualify. However, families who are ineligible for EFMP respite care may be able to access community-based respite care programs. EFMP respite care is also separate from TRICARE’s ECHO respite and ECHO Home Health Care (EHHC) respite programs, both with their own eligibility requirements.

Getting the most benefit from EFMP

Families enrolled in EFMP can get the most benefit from EFMP by contacting their installation’s Family Support office to:

  • Connect with the Family Support office at the new duty station to facilitate services and supports prior to a PCS
  • Locate resources at the state and local levels, such as civilian respite programs and disability-specific events
  • Identify state and federal benefits for which the enrolled family member may be eligible, such as Medicaid waivers, Vocational Rehabilitation, and scholarships for individuals with disabilities

The DoD developed the EFMP Family Support Feedback Tool as a method for families who have accessed their installation’s EFMP Family Support to provide feedback about their experiences. This information applies to the DoD’s Office of Special Needs’ policy development and program improvements for all branches of services.

Download the EFMP Enrollment Checklist.

Learn More about EFMP

This is part of a two-part series on this topic of the Exceptional Family Member Program (EFMP). This article continues from Part 1: What Makes a Military Family Exceptional?

STOMP (Specialized Training of Military Parents) provides information and resources to military families, individuals with disabilities, and both military and civilian professionals serving military families enrolled in EFMP. Register for upcoming STOMP workshops and webinars to learn more about the lifespan of benefits available to military families under federal law and military programs.

Military OneSource is an official DoD website and a information hub for all aspects of military life. EFMP & Me, a companion website managed by Military OneSource, organizes hands-on tools, federal and state information, military and civilian services and resources, and related supports and programs in one place.

Additional Resources

Exceptional Family Member Program (EFMP), Part 1: What Makes a Military Family Exceptional?

Posted on by Nicol Walsh
Download the EFMP Enrollment Checklist

A Brief Overview

  • This is part one of a two-part series on this topic of the Exceptional Family Member Program (EFMP). This article continues in Part 2: How Does EFMP Benefit Military Families?
  • Every branch of the U.S. Armed Forces is required to have a program for dependents of active-duty service members (ADSMs) with special medical or educational needs called the Exceptional Family Member Program (EFMP).
  • The Coast Guard is the only branch of service that uses a different name for their program – the Special Needs Program (SNP).
  • Enrollment is mandatory for all dependents of active-duty service members who have a special medical or educational need, regardless of the dependent’s age.
  • The two standardized enrollment forms are available on Military OneSource and, where available, on branch-specific websites.
  • Enrollment support is available on installation at family support centers.

Full Article

The Exceptional Family Member Program (EFMP) is a mandatory program for all branches of the U.S. Armed Forces that helps military dependents with special medical or educational needs. The Army, Navy, Air Force, Marine Corps, and Space Force each have an Exceptional Family Member Program (EFMP). The Coast Guard, which operates under the authority of the Department of Homeland Security, has a similar program called the Special Needs Program (SNP).

Purpose and Intent

The purpose of the EFMP is to –

  • identify dependents of servicemembers with special education or medical needs,
  • make sure the family’s needs are considered during the assignment process,
  • connect families with resources and assistance wherever they are assigned, and
  • assist with questions, concerns, and resources.

Although the purpose of EFMP and SNP are the same across all branches of service, there are some differences with names, procedures, and forms. There are also differences by installation, such as the availability of respite care providers and services provided by EFMP Family Support.

Eligibility

Enrollment in EFMP is mandatory for eligible dependents of active-duty service members (ASDMs). It is not an age-limited or age-specific program; dependent children and adults, including spouses, incapacitated adults (unmarried adult children with disabilities, parents and parents-in-law, and other adult dependents), must be enrolled in EFMP if they meet one of the following criteria:

  • Have special medical needs, including chronic and/or mental health conditions, that require ongoing treatment from medical specialists.
  • Have significant behavioral health concerns.
  • Are eligible for or receive early intervention services (EIS) through an Individualized Family Service Plan (IFSP) for infants and toddlers (ages 0-3).
  • Are eligible for or receive special education services through an Individualized Education Program (IEP) for students aged 3 through 21.

National Guard and Reserve personnel with family members who have special medical or educational needs may be eligible during the time period when the service member is called for active-duty orders under Title 10 (10 U.S.C.).

Enrollment

Enrollment in EFMP or SNP begins with two enrollment forms that are available for download from Military OneSource:

  • DD Form 2792, “Family Member Medical Summary”: This form must be completed by the family member’s TRICARE-authorized primary care provider. This can be either the primary care manager or a specialty care provider.
  • DD Form 2792-1, “Special Education/Early Intervention Summary”: The instructions state that the child’s IFSP or IEP must also be provided with this form. If the child has an IFSP, is not yet enrolled in school, or is home-schooled, the parents may complete and sign the fields reserved for the educational authority.

Medical providers often require a separate appointment for completing the EFMP paperwork. Ask about the provider’s policy for completing paperwork and how to submit the forms before the visit while scheduling the appointment. The family member’s TRICARE plan and how the provider bills the appointment will determine whether there will be a copay for the visit.

Although all branches of service use the same standardized forms, some of the services have developed website platforms for families to submit the forms electronically.

Save time in the future by keeping a copy of the completed enrollment forms and IFSP or IEP in your home records system. Never give away your last copy!

Help with Enrollment

If this is the first time the family has submitted the EFMP forms, it is a good idea to first take them to the branch-specific military and family support centers on installations for review, including:

Reserve components also have branch-specific military and family support centers.  Learn more about what these programs offer and links to the branch-specific Reserve programs in this article from Military OneSource.

Find your EFMP enrollment or family support. In the drop-down menu for “Program or service”, select “EFMP Family Support” or “EFMP Enrollment”. Then, select your location from the drop-down menu labeled “Location based on”.

Download the EFMP Enrollment Checklist

Learn More about EFMP

This is part of a two-part series on this topic of the Exceptional Family Member Program (EFMP). This article continues in Part 2: How Does EFMP Benefit Military Families?

Additional Resources

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

Infant Early Childhood Mental Health

Posted on by Nicol Walsh

A Brief Overview

  • Infant and Early Childhood Mental Health (IECMH) is a term that describes how young children develop socially and emotionally. They learn about their emotions form close and secure relationships with their caregivers and family members. They learn and explore the environment – all in the context of family, community, and culture.
  • Families concerned about a child’s development can call the Family Health Hotline at 1-800-322-2588, with support in multiple languages. Parents can complete a developmental screening online for free at Parent Help 123.
  • PAVE provides an article for next steps after age 3: What’s Next when Early Childhood Services End at Age 3? Another PAVE article for families new to special education: Steps to Read, Understand, and Develop an Initial IEP.
  • 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.
  • Early Support for Infants and Toddlers (ESIT) helps young children with disabilities or delays to learn and supports their unique development.

Full Article

New parents may struggle to know whether their child’s emotional development is on track. They may have a feeling that a milestone is missed, or they may observe siblings or the emotional well-being of other children and notice their child is developing differently. Sometimes a parent just needs reassurance. Other times, a child may have a developmental delay or a disability. In those cases, early support, including Infant Early Childhood Mental Health (IECMH) can be critical to a child’s lifelong learning and development.

IECMH is a term that describes how very young children develop socially and emotionally. They form relationships with other people. They learn about their emotions and how to control them. This happens in the settings of their family, community, and culture. (Zero to Three, Basics of Early Childhood Mental Health, 2017).

According to Best Starts for Kids, relationships are at the heart of human development and thriving for infants, toddlers, and young children. Relationships with parents and caregivers give very young children the social and emotional foundations they need to learn and thrive.

The Washington Health Care Authority reports around 1 in 6 young children has a diagnosed mental, behavioral, or developmental condition (Cree et al., 2018). These conditions may be treated with infant early childhood mental health (IECMH) services.

Services work to improve the quality of the child’s relationship with parents or caregivers. They can:

  • Help the distress of the mental health concern.
  • Support the return to healthy development and behavior.

When families receive Early Support for Infants and Toddlers (ESIT) services for a child, the child is tested as part of an Individualized Family Service Plan (IFSP).

The evaluation looks at the child’s ability to:

  • Identify and understand their own feelings;
  • Accurately notice and understand other people’s emotional states.
  • Manage strong emotions in a positive way.
  • Control their behavior.
  • Develop empathy (understand how people feel based on the child’s own experience)
  • Make and support relationships.

The evaluation may show the child is not developing well in some of these areas.  IECMH services may help.

Some examples of Infant and Early Childhood Mental Health services include:

  • Early Childhood Mental Health Consultation
  • Parent training
  • Childcare provider training
  • Group training
  • Parent Behavioral Therapy
  • Cognitive Behavioral Therapy
  • Infant/Child – Parent Psychotherapy
  • Play therapy

If you are concerned about a child’s development:

  • To learn about typical development, read the birth-to-6 pre-screening chart in English or Spanish
  • Please Ask is a three-minute video that shows the importance of referring infants and toddlers for early intervention. ESIT is a part if the Department of Children, Youth and Families
  • Families can call the ESIT local lead agency: Local Lead Agencies by County
  • Family Health Hotline: 1-800-322-2588. This statewide, toll-free number offers help in English, Spanish, and other languages.
  • Early Learning Transition: When Birth-3 Services End

More Resources:

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

Posted on by Nicol Walsh

A Brief Overview

  • Special Education is provided through the Individualized Education Program (IEP) for a student with a qualifying disability. The first step is to determine eligibility through evaluation. This article describes that process and provides information and resources related to each eligibility category.
  • Specially Designed Instruction (SDI) is the “special” in special education. The evaluation determines whether SDI is needed to help a student overcome barriers of disability to appropriately access education. Learning to ask questions about SDI can help families participate in IEP development. To learn more, watch PAVE’s three-part video series: Student Rights, IEP, Section 504, and More.
  • Washington law requires evaluation referrals in writing. The state provides a form for referrals, downloadable from a website page titled, Making a Referral for Special Education. The person making the referral can use the form or any other format for their written request.
  • PAVE provides a Sample Letter to Request Evaluation.

Full Article

If a student is having a hard time at school and has a known or suspected disability, the school evaluates to see if the student qualifies for special education. A child is protected in their right to be evaluated by the Child Find Mandate, which is part of the federal Individuals with Disabilities Education Act (IDEA).

If eligible, the student receives an Individualized Education Program (IEP). Information collected during the evaluation is critical for building the IEP.

The school follows specific deadlines for an evaluation process. They have 25 school days to respond to the referral in writing. If they proceed with the evaluation they have 35 schools days to complete the assessment. For an eligible student, an IEP must be developed within 30 calendar days.

If parents disagree with the school’s evaluation, they can request an Independent Educational Evaluation (IEE) in writing. The school must either pay for the IEE or defend its evaluation and their IEE denial through Due Process. PAVE provides an article, Evaluations Part 2, with more information and a sample letter for requesting an IEE.

Complaint options and family/student rights are described in the Procedural Safeguards, downloadable in multiple languages on the website of the Office of Superintendent of Public Instruction (OSPI).

When a written referral is submitted to the school district: The IEP Services begin ASAP with the signed consent of the parent. The school district has 30 calendar days to develop the IEP and 35 school days to complete the evaluation.

Evaluation is a 3-part process

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

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

If the answer to all three questions is Yes, the student qualifies for an IEP. After the evaluation is reviewed, the IEP team meets to talk about how to build a program to meet the needs that were identified in the evaluation. A summary of the most important findings is listed in the Adverse Educational Impact Statement on the IEP. Additional findings become part of the present levels statements, which are matched with IEP goal-setting and progress monitoring.

TIP: Read the Adverse Educational Impact Statement carefully to make sure it captures the most important concerns. The rest of the IEP is responsible to serve the needs identified in this statement. Families can request changes to this statement at IEP meetings. PAVE’s article, Advocacy Tips for Parents, provides information to help families prepare for and participate in meetings.

Don’t wait to evaluate because of provider wait lists

Depending on a student’s suspected areas of disability (see categories listed below), the district may need medical information. However, the school cannot delay the evaluation while requiring parents to get that medical information. If medical information is necessary for an eligibility determination, the district must pay for the outside evaluation. OSPI includes more detail about these requirements in a Technical Assistance Paper (TAP No. 5).

What areas can be evaluated?

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

Listed below are examples of skill areas that are commonly evaluated:

  • Functional: Functional skills are necessary for everyday living, and deficits might show up with tasks such as eating, handling common classroom tools or using the restroom.
  • Academic: Testing in specific academic areas can seek information about whether the student might have a Specific Learning Disability, such as dyslexia.
  • Cognitive: Testing to determine intelligence quotient (IQ) scores: verbal IQ, performance IQ, and full-scale IQ. These tests provide important data about a student’s strengths and weaknesses and can be important for IEP teams making decisions about how to adapt materials to ensure accessibility.
  • OT and Speech: Occupational Therapy and Speech/Language can be included as specific areas for evaluation, if there is reason to suspect that deficits are impacting education.
  • Social-Emotional Learning: Many evaluations collect data in an area of education called Social Emotional Learning (SEL), which can highlight disabilities related to behavior, social interactions, mental health or emotional regulation. It’s common for parents to fill out an at-home survey as part of an SEL evaluation process.
  • Autism Spectrum: Testing can look for disability related to autism spectrum issues, such as sensory processing or social difficulties. Testing in this area can be done regardless of whether there is a medical diagnosis.
  • Adaptive: How a student transitions from class-to-class or organizes materials are examples of adaptive skills that might impact learning.

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

Below is an infographic showing this: See this infographic in PDF form

An infographic of what areas can be evaluated.

Eligibility Categories of Disability

Areas of evaluation are associated with 14 eligibility categories. These are broad categories, and sometimes there is discussion about which is the best fit to capture information about a student’s unique situation. Please note that there is no such thing as a “behavior IEP” or an “academic IEP.” After a student qualifies, the school is responsible to address all areas of need and design programming, services and a placement to meet those needs. An IEP is an individualized program, built to support a unique person and is not a cut-and-paste project based on the category of disability.

Below is a list of the 14 eligibility categories, including some information about places to get further information or specific resources.

  • Autism: A student does not need a medical diagnosis to be evaluated by the school. If features of autism may significantly impact access to learning, then the school can assess those features to determine eligibility and special education needs. See PAVE’s article about Autism Spectrum Disorder for information and resources.
  • Emotional Disturbance: Psychological or psychiatric disorders (anxiety, depression, schizophrenia, post-traumatic stress, etc.) can fall under this category, which Washington State refers to as Emotional Behavioral Disability (EBD). Please note that all eligibility categories are intended to identify the needs of students and are not intended to label children in ways that might contribute to stigma or discrimination. PAVE provides a Behavioral Health Toolkit for Navigating Crisis, School-Based Services, Medical Services, Family Support Networks, and More.
  • Specific Learning Disability: Issues related to dyslexia, dysgraphia, dyscalculia, or other learning deficits can be educationally assessed. A formal diagnosis is not required for a student to qualify under this category. The school might find, for example, that a student has a reading disability “with the characteristics of dyslexia,” although the school may not be willing to name the condition using formal diagnostic terms. Washington requires schools to screen primary school children for dyslexia. The Office of Superintendent for Public Instruction (OSPI) has information about state requirements. PAVE provides an article, Dyslexia Screening and Interventions: State Requirements and Resources, and a video,Supporting literacy: Text-to-Speech and IEP goal setting for students with learning disabilities.
  • Other Health Impairment: ADHD, Tourette’s Syndrome and other medical diagnoses are captured within this broad category, often shorted to OHI or Health-Impaired on the IEP document. Sometimes a Related Service is needed to assess a student because school staff do not have the expertise to properly understand a disability condition in order to make service recommendations. “Medical services for diagnostic or evaluation purposes” are written into federal law (IDEA Section 1432) as something schools provide at no cost to the family, if necessary as part of special education process.
  • Speech/Language Impairment: This category can include expressive and/or receptive language disorders in addition to issues related to diction (how a student is able to produce sounds that are understood as words). Social communication deficits also might qualify a student for speech services. The Washington Speech Language Hearing Association (wslha.org) provides Consumer Information on its website and published a downloadable resource, Guidelines for Evaluation and Identification of Students with Communication Disorders.
  • Multiple Disabilities: Students with complex medical and learning needs can meet criteria in this category. Depending on their impairments, a student eligible in this category might receive services in a range of ways that overlap with other disability categories. Washington Sensory Disabilities Services (WSDS.wa.gov) may have information and resources to support families and schools in these complex situations.
  • Intellectual Disability: A student with Down Syndrome or another genetic or cognitive disorder might meet criteria in this category. Washington State’s Department of Social and Health Services manages the Developmental Disabilities Administration (DDA) that provides services for people with intellectual and developmental disabilities (I/DD). DDA’s Informing Families website and newsletter is a place for information and resources. A child with a disability related to I/DD may be identified early and receive Birth-3 services through an Individualized Family Service Plan (IFSP). PAVE provides an Early Learning Toolkit.
  • Orthopedic Impairment: OI refers to physical disabilities that impact access to education. PAVE provides an article about Related Services to help families understand services provided through school versus the medical system.  
  • Hearing Impairment: Whether permanent or fluctuating, a hearing impairment may adversely affect a child’s educational performance. The Center for Deaf and Hard of Hearing Youth (cdhy.wa.gov) provides information and resources for families and schools. Another place for information is Washington Sensory Disabilities Services (WSDS.wa.gov).
  • Deafness: A student unable to process linguistic information through hearing, with or without amplification, may be eligible for services under this category. The Center for Deaf and Hard of Hearing Youth (cdhy.wa.gov) provides information and resources for families and schools.
  • Deaf blindness: A combination of hearing and visual impairments establishes a unique set of special education service needs. The Washington DeafBlind Program (deafblindprogram.wa.gov) provides information about seeking educational support and connecting with other families.
  • Visual Impairment/Blindness: Partial sight and blindness may fit this category when, even with correction, eyesight adversely affects a child’s educational performance. Washington State’s Department of Services for the Blind (DSB) is an agency that provides youth and adult services for individuals who are blind or low vision. Other places to seek resources and information are Washington Sensory Disabilities Services (WSDS.wa.gov) and Outreach services from the Washington State School for the Blind (wssb.wa.gov/services/outreach).
  • Traumatic Brain Injury: The state provides resources related to TBI, including guidance about Returning to School After Traumatic Brain Injury. Another place for resources and support is the Brain Injury Alliance of WA.
  • Developmental Delay (ages 0-9): This category can qualify a child for early learning (Birth-3) services in addition to IEP services through age 9. By age 10, a new evaluation may determine eligibility in another category for IEP services to continue. PAVE’s Early Learning Toolkit includes information to support families of babies, toddlers, preschoolers, and children in early elementary school.

What to do if you disagree

The IDEA requires schools to use “technically sound” instruments in evaluation. Generally, that means the tests are evidence-based as valid and reliable, and the school recruits qualified personnel to administer the tests. The IDEA is clear that a singular measure, such as an Intelligence Quotient (IQ) test, does not meet the standard for an appropriate evaluation.

Parents can take action if they disagree with the way testing was done or the way it was interpreted.

Parents can always ask school staff to describe their decisions in writing, and parents have rights guaranteed by the IDEA to informally or formally dispute any decision made by the school. The Center for Appropriate Dispute Resolution in Special Education (CADRE) offers a variety of guidebooks that describe these options. In Washington State, the Office of Superintendent of Public Instruction (OSPI) provides state-specific guidelines for dispute resolution.

A student may qualify for a Section 504 Plan, if not an IEP

Section 504 is part of the Rehabilitation Act of 1973. This Civil Rights law protects individuals with disabilities that severely impact “major life activities,” such as learning, breathing, walking, paying attention, making friends… The law is intentionally broad to capture a wide range of disability conditions and how they might impact a person’s life circumstances.

A student with an IEP has protections from Section 504; those protections are included in the IEP.

Sometimes students who don’t qualify for the IEP will qualify for accommodations and other support through a Section 504 Plan. PAVE has an article about Section 504, which provides an individual with protections throughout the lifespan.

Protections against bullying and discriminatory discipline are aspects of Section 504. Watch PAVE’s video, Behavioral Health and School: Key Information for Families.

Help from PAVE

PAVE’s Parent Training and Information (PTI) team provides 1:1 support and additional resources. Click Get Help or Call 1-800-5PARENT (572-7368) and select extension 115, English or Spanish available, to leave a dedicated message.

Advocacy Tips for Parents

Posted on by Nicol Walsh

When a child has a disability, parents often learn that getting their child’s needs met requires persistence, organization, and advocacy. Advocacy is an action. A person is an advocate when they organize the work and press onward until a goal is achieved. Laws that protect the rights of students with disabilities also protect parents as legal advocates for their children.

This article includes tips for parent advocates working with the school. For more about parent rights, read PAVE’s article, Parent Participation in Special Education Process is a Priority Under Federal Law.

Before a meeting…

  • Invite someone to attend with you. A friend or family member can help you take notes, ask questions, and keep track of your agenda.
  • Make sure you understand the purpose of the meeting. Is it to talk about an evaluation, review the Individualized Education Program (IEP), write a Section 504 Plan, consider a behavior support plan, discuss placement, or something else? If you want a certain outcome, make sure it’s within the scope of the meeting. If not, you may need more than one meeting.
  • Make sure you know who will be at your meeting. An IEP team has required attendees. PAVE provides more detail about IEP team requirements in an article that includes a Sample Letter to Request an IEP Meeting.
  • Consider anyone else you want to attend. Parents have the right to invite vocational specialists, related service providers, behavioral health providers, peer support specialists—anyone with knowledge of the student and their needs.
  • Get copies of important documents (evaluation, IEP, 504 Plan, behavior plan, etc.). Read them carefully so you can use these documents to organize your concerns and questions. Keep in mind that a services program/plan is a draft until after you meet.
  • If the school doesn’t provide documents with enough time for you to prepare, consider rescheduling.
  • Mark up a Draft IEP with your suggestions and questions:
    • Read the educational impact statement carefully. Consider if it accurately summarizes your student’s strengths and needs. If not, makes notes about what you want to add or change.
    • Note any changes you want under Medical/Physical or Parent Concerns.
    • If a goal is too hard or too easy, make a note to ask about adjusting it.
    • If a goal is written with jargon and impossible to understand, ask for an explanation and maybe a rewrite
    • Prepare to ask how teachers are using Specially Designed Instruction (SDI) to help your student reach IEP goals.
    • Read the services table, sometimes referred to as a “services grid” or “services matrix” to understand how often and where your student is being served.
    • Consider any questions you have about placement or access to general education settings. If you believe your student could be successful in general education for more of their day, consider what supports would make that possible.
    • Write down any questions about how the classroom or curriculum are adapted to be accessible. You might ask if the teachers are using Universal Design for Learning (UDL) strategies to support multiple types of learners.
    • Write down your questions about progress and how it’s being tracked.
  • For an IEP or 504 Plan, read the accommodations carefully and make notes to ensure they are individualized and implemented to truly support your student.
  • Highlight anything in the behavior plan that sounds like bias or prejudice and consider how it might be rewritten. PAVE provides examples in a video training about development of a Behavior Intervention Plan.
  • To help you organize your questions and concerns, PAVE provides: Get Ready for Your Meeting with a Handout for the Team.
  • Learn about student and family rights and practice the vocabulary that empowers your advocacy. PAVE provides a three-part video training to help: Student Rights, IEP, Section 504 and More.

At your meeting…

  • Do your best to arrive on time to make sure there is time to address concerns. If you notice there may not be enough time to do this, request to schedule another meeting.
  • Make sure the meeting begins with introductions and that you know everyone’s job and what role they serve on the IEP team. If it’s important to you, when you introduce yourself you can ask team members to use your name instead of mom, dad, gramma, or something else other than your name when they refer to you.
  • Ask school staff to explain acronyms or jargon while they are talking because you want to understand what everyone says.
  • If an IEP team member is absent (WAC 392-172A-03095), parents must sign consent for the absence. If someone is missing and you don’t think it’s appropriate to continue, ask to reschedule. If key members need to leave before the meeting is over, consider ending the meeting and schedule an alternative day/time.
  • Keep focus on your student’s needs. Here are a few positive sentence starters: I expect, I understand, My child needs….
  • If you notice the conversation steering into past grievances, the district’s lack of funds, or what “all the other children” are doing, bring focus back to your child and their current needs. Try stating, “I want to focus on [name].”
  • Use facts and information to back up your positions and avoid letting emotion take over. Ask for a break if you need time for some regulated breathing or to review documents or notes.
  • Notice other team members’ contributions that support your child’s needs. Here are a few phrases to consider:
    • “I think what you said is a good idea. I also think it could help to…”
    • “I think you are right, and I would like to add…”
    • “I hear what you are saying, and…”
  • If you don’t understand something, ask questions until the answer is clear.
  • If you disagree about something and your comments aren’t changing anyone’s mind, explain that you want your position included in the Prior Written Notice (PWN), which is the document the school is required to send immediately after an IEP meeting.
  • If you hear something confusing, ask the school to put their position and rationale in writing so you can follow up.
  • Request to end the meeting if it stops being productive. Tell the other team members that you would like to continue working with them and ask to schedule another meeting. This might include adding people to the team to help resolve issues.

After a meeting…

  • Review your notes and highlight or circle places where there is an action or something that needs follow through. Transfer relevant information into your calendar.
  • When the Prior Written Notice (PWN) arrives (usually within a few days), compare it to your notes. Make sure all key agreements, actions, and IEP/504 amendments match what you understood to be the plan when you left the meeting.
  • If you want something changed in the PWN, ask for those changes in writing.
  • If you disagree with the outcome of the meeting, review your Procedural Safeguards (downloadable in multiple languages) and consider your dispute resolution options.
  • If you consider filing a Community Complaint, PAVE provides a video training to walk you through that option.
  • Consider contacting school district special education staff if they didn’t participate in the meeting and you think your team needs more support.
  • Consider asking for another meeting, Mediation, or a Facilitated IEP meeting, if issues are unresolved.

PAVE’s Parent Training and Information (PTI) program can help family caregivers organize their concerns and options. Click Get Help for individualized assistance.

PAVE Provides Sample Letters to Support Families in their Advocacy

Posted on by Nicol Walsh
Download this page: Sample Letters to Support Families in their Advocacy

An advocate is someone who works toward a cause or goal. Sometimes the hardest part of advocacy is figuring out what to do next. When a child has unmet needs at school, family advocates can seek changes to a student’s services by asking for an evaluation, a meeting, a behavioral assessment, or something else. Putting any request in writing formalizes the process and holds everyone accountable.

PAVE helps families get started with a collection of sample letters. We’ve bundled links to those letter templates here for easy reference. Each link takes you to a short article with key information to help you understand the process of special education and how your customized letter can move you forward in that process.

Always keep your “why” in mind. Why are you taking action? Because you want something to improve for your child! PAVE’s short video, Quick Start Your Advocacy in Two Steps, might help you get ready to craft a letter. The video helps you ask two key questions:

  • What do you want?
  • Who has the power to work with you and make that happen?

As you write your letter, keep those questions and your “why” top of mind. Here are articles with sample letters to help you begin your next step:

  • Sample Letter to Request Evaluation: Schools are required to evaluate students to determine eligibility for a Section 504 Plan or an Individualized Education Plan (IEP). A referral can come from anyone with knowledge of the student and must be in writing. This article provides a sample letter and a link to an alternative form provided by the Office of Superintendent of Public Instruction (OSPI).
  • Sample Letter to Request an IEP Meeting: Family members can request an IEP team meeting anytime there are concerns about how the IEP is being implemented and whether a student may have unmet needs. This article includes information about who is required to attend an IEP meeting and the rights of parents to participate in educational decision making.
  • Sample Letter to Request a Functional Behavioral Assessment: If a child’s behavior is getting in the way of their education, the school is responsible to assess the problematic behaviors and develop a support plan to teach the student what to do instead. In addition to a sample letter, this article provides a link to a video to help families and schools work together through this process.
  • Evaluations Part 2: Next Steps if the School Says ‘No’: If the school evaluates a student and says they aren’t eligible for an IEP or a specific area of service, parents have steps they can take if they disagree. One option is to request an Independent Educational Evaluation (IEE) from an outside provider. This article provides a sample letter for requesting an IEE at school district expense. If the family requests an IEE because they disagree with the school’s evaluation or its conclusions, then the district must pay for the IEE or deny the request through Due Process: IEE denials are evaluated by an Administrative Law Judge.

Families who want individualized assistance can reach out to PAVE by clicking Get Help and filling out the online request form or by calling 1-800-5-PARENT.

Download this page: Sample Letters to Support Families in their Advocacy

Steps to Read, Understand, and Develop an Initial IEP

Posted on by Nicol Walsh

A Brief Overview

  • A first-time IEP document is a lot to absorb. This article provides tips to help family members read through a draft IEP and prepare to participate on the IEP team that finalizes the Individualized Education Program before services begin.
  • Remember, the school’s first version is a DRAFT, and family members of the IEP team have the right to participate in program development.
  • Under state and federal law, parents have the right to information about their child’s education—including IEPs—in a language they can understand. The Office of Superintendent of Public Instruction (OSPI) provides guidance about language-access rights in multiple languages.
  • Parents or guardians can request a specific method for regularly checking in with school staff.  A weekly or bi-weekly email is common, or parents can arrange to get something in the backpack, a phone call, a text…. Ask for what works and be sure the agreement is included in the Prior Written Notice (PWN), a formal letter sent to parents after meetings and before (prior to…) implementation of services.
  • Services are ongoing unless a parent officially signs a document to revoke services or if a new educational evaluation finds that the student is no longer eligible.

Full Article

After a student is determined eligible for an Individualized Education Program (IEP), the process of building the IEP can feel intimidating. This article provides tips to help family members read through a draft IEP and prepare to participate on the IEP team that will finalize the program before services begin. The process is the same regardless of the age of the student. IEPs can support students ages 3-21, in preschool through high school graduation or aging out at 21.

Washington State requires schools to start IEP services within 30 calendar days of the eligibility finding. That means school staff generally start drafting the IEP right after the school and family meet to talk about the evaluation and the student’s eligibility. A family member can ask to extend the 30-day deadline, but schools cannot delay the process without parental consent.

Tip: If the school wants to have a meeting to discuss eligibility and IEP development all at once, parents can request a two-meeting process instead to have time to digest the information and fully participate in decision-making.

What is the student’s eligibility category?

Take note of the eligibility category that entitles the student to an IEP. This category is decided during the evaluation review meeting. Sometimes more than one of 14 possible categories applies, and the IEP team chooses the category that seems the best fit.

Once chosen, the category is less important than the services that are needed for a student to access meaningful learning. Parents may want to be aware of implicit biases associated with certain eligibility categories and ensure that school staff are talking about the whole child and not using labels to fit children into pre-built programs. For example, there’s no such thing as a “Behavior IEP” or an “Academic IEP.” Individual children have programs built to meet their needs, based on evaluations that highlight their strengths as well as deficits. Read on for information about the rights of children with disabilities to be served as general education students first—in the Least Restrictive Environment (LRE).

The eligibility category is listed on the “Cover Page” of the IEP document, near the name, birth date, and other personal details about the student. PAVE provides an article, Evaluations Part 1, that describes the evaluation process and includes a list of 14 eligibility categories that apply in Washington State.

Know what’s in the IEP before you meet

The IEP document is a lot to absorb, and family members are more prepared to support their child when they review the IEP draft before meeting with the IEP team for the first time. The document may be 10-20 pages long (or longer), but don’t be intimidated! A child’s education is worth taking time to read for understanding.

Be sure to ask for a copy of the IEP draft with enough time to look it over before the meeting. Some IEPs have only a few services and goals while others are quite complex. The amount of time a family needs for review also might depend on whether the document is translated into a language besides English.

Under state and federal law, parents have the right to information about their child’s education in a language they can understand. The Office of Superintendent of Public Instruction (OSPI) provides guidance about language-access rights in multiple languages.

Below are suggestions for looking through the IEP to prepare for a meeting. Use this list like a map guiding you through the IEP document.

Start with the Service Matrix

The Service Matrix is about halfway through the IEP and looks like a chart/grid. These are the suggested services. Remember, the school’s first version is a DRAFT IEP, and family members of the IEP team have the right to participate in program development.

  • The services are how a student receives Specially Designed Instruction (SDI) in each area where the student has significant deficits that make them eligible for special education.
  • Notice how many minutes are being offered to support learning in each area of SDI. The SDI supports at least one goal for each subject area, so consider whether there’s enough time for the learning that will support progress (read on for more about goals).
  • The Service Matrix includes Related/Ancillary Services if the student is eligible for them. These are therapeutic services, such as occupational, physical, or speech therapy. Mental health counseling and parent training (for example, to learn behavioral strategies) may be listed as Related Services.
  • Sometimes Related Services are offered through “consultation,” meaning that a specialist will make recommendations to school staff but won’t work directly with the student. Notice how services are listed and whether you agree that they will meet the student’s needs.
  • If a child will transition to a different level of school within the year, there may be two grids. One grid is for the rest of the current year, and the other grid is for the next academic year at the new school. Service minutes are often slightly different for elementary, middle, and high school.
  • Consider whether the IEP team will schedule a “transition conference” to talk about the switch to a new level of school and how services might change.
  • The grid includes a location for each service. Notice whether the student is going to be pulled out of class to receive a service or whether the services will be “pushed in” to a general education classroom.
  • Make note of any questions or concerns about the Service Matrix that you want to include in your agenda for the IEP meeting.

Refer to the Present Levels statements

The Present Levels of Academic Achievement and Functional Performance (PLOP for short) are within the first few pages of the IEP. This is the part of the IEP with the most room for paragraphs about what’s going on. These statements come mostly from evaluation, and parents, teachers, and service providers may contribute language and information to enhance them. This section of the IEP explains why the student needs services.

  • Consider whether the Service Matrix adequately addresses the needs identified in the Present Levels.  
  • Goals are described within the Present Levels and again in another section of the IEP that is just for goal setting. Make sure nothing is left out and that language is consistent throughout the IEP.
  • Read the goals carefully. The Present Levels statements provide a “baseline,” to show where a student starts before new learning begins.
  • Are the goals SMART (Specific, Measurable, Achievable, Relevant, Time-Bound)?
  • In particular, is each goal Achievable with the instructional time offered through the Service Matrix?
  • Are any goals too easy?
  • Students with IEPs are entitled to a Free Appropriate Public Education (FAPE). FAPE includes the right to an IEP that is reasonably calculated to enable progress appropriate in light of the child’s circumstances. Are the goals set at the right level to support meaningful progress?
  • Parents can suggest changes to the goals at the IEP meeting.
  • Parents can ask what teaching strategy (SDI) will help the student reach the annual goals. Here’s a way to ask: “Can you help me understand HOW you will be teaching my child, so I can use similar words and strategies when I’m helping my child learn?”
  • A general description of the teaching strategy can be incorporated into the Present Levels statements.
  • PAVE provides an article with more tips about goal setting.
  • Write down questions and concerns about Present Levels or Goals for the team meeting.

Compare Service Matrix and LRE statement

The Present Levels, Goals, and Service Matrix are the heart of a student’s Individualized Education Program (IEP). After reading through these sections,notice if any of the student’s services are listed as “concurrent,” which means they are provided within general education (push in). Notice also which services are being offered in a separate (pull out) classroom. Then keep going in the IEP document to find a statement about the student’s Least Restrictive Environment (LRE).

  • A student is entitled to FAPE in the Least Restrictive Environment to the maximum extent appropriate.
  • Consider whether the IEP team has adequately considered that special education is a service, not a place.
  • Are there additional creative ways to consider how services might be “push in” instead of “pull out” to support more inclusion, if appropriate, to meet the student’s needs?
  • The LRE page includes a grid to mark what was considered and chosen as a range/percentage of time that a student will spend in special education versus general education.
  • Consider whether you agree with the LRE determination and note any concerns for the IEP team to discuss.

Read the list of accommodations.

Accommodations are designed to enable a student with a disability to access learning in ways that are equitable. Equity doesn’t mean equal. Equity exists when a student gets support (like a wheelchair ramp, toileting plan, earphones, or a break-space option) to access what typically developing classmates can access without support.

  • Consider how the accommodations will look and feel to the student. Will the student be able to understand and self-advocate for them, or will the student need more coaching from teachers for the supports to be meaningful?
  • If possible, collect student input or ensure the student can attend the IEP meeting to participate in discussion about their supports and services.
  • Are the supports individualized and thoughtful or pulled from a pre-built list? Be sure they address needs identified through evaluation and by the student, family, and other people who truly know this student.
  • A student does not need to be “eligible” for an accommodation. There simply needs to be demonstrated impact on a “major life activity.” See PAVE’s article about Section 504.
  • The accommodations section of an IEP or a Section 504 Plan can travel with a student into higher education, vocational education, or work.
  • Is there anything the student needs that is missing? The Present Levels section at the front of the IEP might provide insight.
  • “Teacher check for understanding” is a common school accommodation. Parents may want to ask how the teacher will develop a system for doing that.
  • Parents can ask how the school will share the list of accommodations with all relevant staff. For example, does a bus driver, school nurse, or lunch server need to read this list? Would it be reasonable for the student to hand-carry a handout version?
  • If the student will transition into a new level of school within the year, consider how to discuss the accommodations with the new teaching team next term.
  • Notice if there are any “modifications,” which would include changes to the expectations—such as doing a shorter assignment or showing work in an alternative format. Does anything need to be added?
  • Make note of any concerns related to accommodations or modifications and plan to share those with the IEP team.

Accommodations for state testing

Note any concerns about how a child will be accommodated on standardized tests. Students with IEPs may be allowed extra time, an alternative place or time to take the tests, or something else. Try to imagine the experience of testing from the student’s perspective and consider how accommodations will enable the student to demonstrate knowledge.

Communication and Prior Written Notice (PWN)

Parents can request a specific method for regularly checking in with school staff.  A weekly or bi-weekly email is common, or parents can arrange to get something in the backpack, a phone call, a text…. Ask for what works. At the IEP team meeting, the group can agree on a communication strategy.

A communication agreement is formally written into the Prior Written Notice (PWN), which the school sends to parents after the IEP meeting.

A parent can request further changes to the IEP and note any disagreements by submitting a note to attach to the PWN, which becomes part of the formal IEP document. The PWN includes detail about what the IEP team has agreed to implement and when services are scheduled to begin.

Sign Consent for services to begin

Once the team agrees on a final version of the IEP, a parent must sign consent for services to begin. From that point on, families have the right to request an IEP team meeting any time there are concerns about progress or services. The IEP team is required to meet at least once a year. At meetings, family participants sign to show their participation and attendance.

Services are ongoing unless a parent officially signs a document to revoke services or if a new evaluation finds that the student is no longer eligible. A new evaluation is required at least every three years to determine ongoing eligibility and any necessary changes to the student’s program. A parent who disagrees with a school district evaluation can request an Independent Educational Evaluation (IEE) at district expense. See PAVE’s article: Evaluations Part 2.