Steps to Read, Understand, and Develop an Initial IEP

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.

Mental Health Education and Support at School can be Critical

A Brief Overview

  • Alarming statistics indicate the pandemic has worsened behavioral health outcomes for young people. Governor Jay Inslee on March 14, 2021, issued an emergency proclamation declaring children’s mental health to be in crisis.
  • Students eligible for special education services through the federal category of Emotional Disturbance are more than twice as likely as other disabled peers to quit school before graduating.
  • These outcomes make adolescence a critical time for mental health promotion, early identification and intervention. Read on for further information and resources.
  • Seattle Children’s Hospital has a referral helpline. Families can call 833-303-5437, Monday-Friday, 8-5, to connect with a referral specialist. The service is free for families statewide.
  • Help is available 24/7 from the Suicide Prevention Lifeline: 1-800-273-TALK.
  • Text HEAL to 741741 to reach a trained Crisis Text Line counselor.
  • For youth who need support related to LGBTQ issues, the Trevor Projectprovides targeted resources and a helpline: 866-488-7386.
  • A place to connect with other families is a Facebook group called Youth Behavioral Healthcare Advocates (YBHA-WA).

Full Article

Alarming statistics indicate the COVID-19 pandemic has worsened circumstances for young people who were already struggling to maintain mental health. Washington’s most recent Healthy Youth Survey, from 2018, revealed that 10 percent of high-school students had attempted suicide within the year. Governor Jay Inslee on March 14, 2021, issued an emergency proclamation declaring children’s mental health to be in crisis.

The governor’s order requires schools to provide in-person learning options and directs the Health Care Authority and Department of Health to “immediately begin work on recommendations on how to support the behavioral health needs of our children and youth over the next 6 to 12 months and to address and triage the full spectrum of rising pediatric behavioral health needs.”

The Children and Youth Behavioral Health Work Group (CYBHWG) was created in 2016 by the Legislature (HB 2439) to promote system improvement. CYBHWG supports several advisory groups, including one for Student Behavioral Health and Suicide Prevention. The work groups include representatives from the Legislature, state agencies, health care providers, tribal governments, community health services, and other organizations, as well as parents of children and youth who have received services. Meetings include opportunities for public comment. Meeting schedules and reports are posted on the Health Care Authority (HCA) website.

A press for more school-based services

Advocacy for more school-based mental health services comes from the University of Washington’s SMART Center. SMART stands for School Mental Health Assessment Research and Training. The SMART center in 2020 provided the legislative work group with a report: The Case for School Mental Health. The document includes state and national data that strongly indicate school-based behavioral health services are effective:

“Increased access to mental health services and supports in schools is vital to improving the physical and psychological safety of our students and schools, as well as academic performance and problem-solving skills. Availability of comprehensive school mental health promotes a school culture in which students feel safe to report safety concerns, which is proven to be among the most effective school safety strategies.”

The statewide Student Behavioral Health and Suicide Prevention advisory group has recommended widespread implementation of Multi-Tiered Systems of Support (MTSS). Through MTSS, schools support well-being for all students through school-wide programming and offer higher levels of support based on student need. Social Emotional Learning (SEL) is a key component of an MTSS framework, which also creates a structure for providing Positive Behavioral Interventions and Supports (PBIS) at various levels of need.

The Office of Superintendent of Public Instruction, the guidance agency for Washington schools, prioritized 2021 budget requests to Empower all Schools to Support the Whole Child, including through MTSS. In January, 2021, OSPI was awarded a five-year, $5.3 million grant from the U.S. Department of Education to build regional coaching capacity to support districts in their MTSS implementation. As a local control state, Washington districts determine their own specific policies and procedures.

TIP: Families can ask school and district staff to describe their MTSS framework and how students are receiving support through the various levels/tiers.

Special Education is one pathway for more help

Students may access mental health support through the special education system. Emotional Disturbance is a federal category of disability under the Individuals with Disabilities Education Act (IDEA). Appropriate support can be especially critical for these students: According to the U.S. Office of Special Education Programs (OSEP), students eligible for school-based services under the ED category are twice as likely to drop out of high school before graduating.

Note that a student with a mental health condition could qualify for an IEP under the category of Other Health Impairment (OHI), which captures needs related to various medical diagnoses.

In Washington State, the ED category is referred to as Emotional Behavioral Disability (EBD). If the student’s behavioral health is impaired to a degree that the student is struggling to access school, and the student needs specially designed interventions, then the student may be eligible for an Individualized Education Program (IEP). Keep in mind that academic subjects are only a part of learning in school: Social Emotional Learning (SEL) is part of the core curriculum. 

An educational evaluation determines whether a student has a disability that significantly impacts access to school and whether specially designed instruction and/or related services are needed for the student to receive a Free Appropriate Public Education (FAPE). FAPE is the entitlement of a student eligible for special education services and an IEP team determines how FAPE/educational services are provided to an individual student.

Behavioral health counseling can be part of an IEP

Counseling can be written into an IEP as a related service. When included in a student’s IEP as educationally necessary for FAPE, a school district is responsible to provide and fund those services. School districts can receive reimbursement for 70 percent of the cost of behavioral health services for students who are covered by Medicaid and on an IEP.

A student with a mental health condition who doesn’t qualify for an IEP might be eligible for a Section 504 Plan. A disability that impairs a major life activity triggers Section 504 protections, which include the right to appropriate and individualized accommodations at school. Section 504 is an aspect of the Rehabilitation Act of 1973, a Civil Rights law that protects against disability discrimination. Students with IEPs and 504 plans are protected by Section 504 rights.

Behavioral Health encompasses a wide range of disability conditions, including those related to substance use disorder, that impact a person’s ability to manage behavior. Sometimes students with behavioral health disabilities bump into disciplinary issues at school. Students with identified disabilities have protections in the disciplinary process: PAVE provides a detailed article about student and family rights related to school discipline.

Placement options for students who struggle with behavior

IEP teams determine the program and placement for a student. In accordance with federal law (IDEA), students have a right to FAPE in the Least Restrictive Environment (LRE) to the maximum extent appropriate. That means educational services and supports are designed to help students access their general education classroom first. If they are unable to make meaningful progress there because of their individual circumstances and disability condition, then the IEP team considers more restrictive placement options. See PAVE’s article: Special Education is a Service, Not a Place.

Sometimes the IEP team, which includes family, will determine that in order to receive FAPE a student needs to be placed in a Day Treatment or Residential school. OSPI maintains a list of Non-Public Agencies that districts might pay to support the educational needs of a student.

A precedent-setting court ruling in 2017 was Edmonds v. A.T. The parents of a student with behavioral disabilities filed due process against the Edmonds School District for reimbursement of residential education. The administrative law judge ruled that the district must pay for the residential services because “students cannot be separated from their disabilities.”

Strategies and safety measures for families

With the release of the Healthy Youth Survey in Spring, 2019, the state issued a two-page Guide to Mental Health Information and Resources to provide more detail about the survey and to direct families and school staff toward resources for support.

Included is a list of factors that help youth remain resilient to mental health challenges:

  • Support and encouragement from parents/guardians and other family members, friends, school professionals, and other caring adults
  • Feeling that there are people who believe in them, care about them, and whom they can talk to about important matters
  • Safe communities and learning environments
  • Self-esteem, a sense of control and responsibility, and problem-solving and coping skills
  • Having an outlet for self-expression and participation in various activities

The handout includes tips for parents and other adults supporting teens who feel anxious or depressed:

  • Bond with them: Unconditional love includes clear statements that you value them, and your actions show you want to stay involved in their lives.
  • Talk with teens about their feelings and show you care. Listen to their point of view. Suicidal thinking often comes from a wish to end psychological pain.
  • Help teens learn effective coping strategies and resiliency skills to deal with stress, expectations of others, relationship problems, and challenging life events.
  • Have an evening as a family where everyone creates their own mental health safety plan.
  • Learn about warning signs and where to get help
  • Ask: “Are you thinking about suicide?” Don’t be afraid that talking about it will give them the idea. If you’ve observed any warning signs, chances are they’re already thinking about it.
  • If you own a firearm, keep it secured where a teen could not access it. Lock up medications they shouldn’t have access to.

State options for behavioral health services and support

For Washington children and youth with Medicaid insurance, the highest level of community-based care in behavioral health is provided through Wraparound with Intensive Services (WISe). The WISe program was begun as part of the settlement of a class-action lawsuit, TR v Dreyfus, in which a federal court found that Washington wasn’t providing adequate mental-health services to youth. WISe teams provide a wide range of therapies and supports with a goal to keep the young person out of the hospital.

Young people under 18 who need residential care to meet medical needs may be referred to the Children’s Long-Term Inpatient program: PAVE’s website provides an article about CLIP.

If a person ages 15-40 is newly experiencing psychosis, Washington offers a wraparound-style program called New Journeys. This website link includes access to a referral form.

The Family, Youth and System Partner Round Table (FYSPRT) provides a meeting space for family members and professionals to talk about what’s working and what isn’t working in mental healthcare. FYSPRT groups provide informal networking and can provide ways for families to meet up and support one another under challenging circumstances.

Federal parity laws require insurers to provide coverage for behavioral health services that are equitable to coverage for physical health conditions. The National Health Law Program (NHLP) provides information and advocacy related to behavioral healthcare access and offers handouts to help families know what to expect from their insurance coverage and what to do if they suspect a parity law violation:

Family Initiated Treatment (FIT) is an option in Washington

Youth older than 13 have the right to consent or not consent to any medical treatment in Washington State. Parents and lawmakers throughout 2018-2019 engaged in conversations about how that creates barriers to care for some teens struggling with behavioral health conditions. The Adolescent Behavioral Health Care Access Act (HB 1874), became law in May 2019. PAVE provides an article about the law and its provision for Family Initiated Treatment.  

Places to seek referrals and information

Seattle Children’s Hospital in 2019 launched a referral helpline. Families can call 833-303-5437, Monday-Friday, 8-5, to connect with a referral specialist. The service is for families statewide. In addition to helping to connect families with services, the hospital is gathering data to identify gaps in care.

PAVE’s Family-to-Family Health Information Center provides technical assistance to families navigating health systems related to disability. Click Get Help at wapave.org or call 800-572-7368 for individualized assistance. Family Voices of Washington provides further information and resources.

Key Resources

For information, help during a crisis, emotional support, and referrals:  

  • Suicide Prevention Lifeline (1-800-273-TALK)
  • Text “HEAL” to 741741 to reach a trained Crisis Text Line counselor
  • Trevor Project Lifeline (LGBTQ) (1-866-488-7386)
  • The Washington Recovery Help Line (1-866-789-1511)
  • TeenLink (1-866-833-6546; 6pm-10pm PST)

Further information on mental health and suicide:  

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

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.
  • 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. Read on to learn more.
  • Parents can request an evaluation by submitting a written letter to the school district. PAVE offers a template to help with letter writing.
  • For more detail about what happens when a student qualifies for special education, PAVE’s website includes a short video, Overview of IEP Process; a more detailed on-demand webinar, Introduction to Special Education; and an article about IEP Essentials.

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. If eligible, the student receives an Individualized Education Program (IEP). Information collected during the evaluation is critical for building the IEP, which provides specialized instruction and other supports in a unique way for each student.

The school follows specific deadlines for an evaluation process, which are described in the state laws provided in the links connected to each of these bullet points:

  • The district must document a formal request for evaluation and make a decision about whether to evaluate within 25 school days (WAC 392-172A-03005).
  • After consent is signed, the school has 35 school days to complete the evaluation (WAC 392-172A-03005).
  • If a student is eligible, the school has 30 calendar days to hold a meeting to develop an initial IEP (WAC 392-172A-03105).

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. Each area of disability that meets these three criteria is included as a goal area on the IEP.

The needs and how the school plans to serve those needs gets written into the section of the IEP document called the Present Levels of Academic Achievement and Functional Performance—sometimes shortened to Present Levels of Performance (PLOP). Becoming familiar with the PLOP section of the IEP is important for family members who participate on IEP teams. IEP goals flop without good PLOP!

Bring ideas to the evaluation review meeting

After an initial evaluation is finished, the school arranges a meeting to review the results and determine whether the student qualifies for services. The evaluation review meeting can include time for family members, students and outside service providers to share ideas about what’s going on and what might help. PAVE provides a tool to help parents and students get ready for this and other important meetings by creating a Handout for Meetings.

Read on for ideas about what to do if the school determines that a student doesn’t qualify for IEP services and parents/caregivers disagree or want to pursue other types of school support.

If a student qualifies for special education, new input can be added to information from the evaluation that is automatically included in the PLOP. The present levels section of the IEP is important because it provides space to document the creative ideas that will support the student at school. This section can provide answers to this question: How will the school support the student in meeting annual goals?

Remember that the 3-part evaluation determines whether the student needs Specially Designed Instruction (SDI). SDI is the “special” in special education. SDI is provided through individualized teaching methods, and its success is tracked and measured through progress on the IEP goals.

Progress monitoring is required annually but can be done throughout the year with a communication strategy designed by the school and family. That communication strategy can be written into the IEP document. PAVE’s article about SMART Goals and Progress Tracking can help families better understand how to participate in follow-through to make sure that the special education program is helping the student make meaningful progress.

FAPE is a special education student’s most important right

Whether the student makes meaningful progress is also a measure of whether the school district is meeting its obligation to provide a Free Appropriate Public Education (FAPE), the primary entitlement of a student who qualifies for special education under criteria established by the Individuals with Disabilities Education Act (IDEA).

PAVE provides an article about the history of special education with more detail about how FAPE became the standard for special education service delivery.

When a student is evaluated, the results are reviewed by a team that includes school staff and the family. The team discusses whether the student qualifies for special education. If yes, then the IEP process begins to determine how best to deliver FAPE. In other words, how will the school district provide an appropriate education to meet a student’s unique needs, in light of the circumstances of disability?

PAVE provides an article describing the IDEA and its six primary principles as the Foundation of Special Education. In addition to FAPE, the primary principles include: appropriate evaluation, IEP, parent and student involvement, education in the Least Restrictive Environment (LRE) and Procedural Safeguards, which provide dispute options and protections to make sure schools follow federal and state rules.

A referral starts the evaluation process

A parent/guardian, teacher, school administrator, service provider or other concerned adult can refer a student for evaluation. PAVE’s recommended guidelines for requesting an evaluation in writing are included later in this article.

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).

If the school agrees to evaluate, a variety of tests and questionnaires are included. The evaluation looks for strengths and difficulties in many different areas, so input from parents, teachers and providers is critical. Generally, the evaluation reviews developmental history and assesses cognition, academic achievement and “functional” skills. Listed below are some common skill areas to evaluate:

  • 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.
  • 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.

Please note that strengths are measured alongside challenges and can provide important details for a robust program. The first part of a present levels statement can always include statements about what the student does well.

Eligibility Categories of Disability

Areas of evaluation are associated with the 14 categories of disability that are defined as “eligibility categories” under the IDEA. 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.

This list includes some common diagnoses and/or issues that come up within each of the IDEA’s 14 categories.

  • 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 (ASD) and resources for families.
  • Emotional Disturbance: Psychological or psychiatric disorders (anxiety, depression, schizophrenia, post-traumatic stress, etc.) can fall under this category, which Washington schools often refer 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.
  • 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. A Washington law taking full effect in 2021-22 requires schools to screen for dyslexia: See PAVE’s article about dyslexia.
  • 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. If medical information is necessary for an eligibility determination and not already available, the school district must pay for the outside evaluation.
  • 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.
  • Multiple Disabilities: Students with complex medical and learning needs can meet criteria in this category.
  • Intellectual Disability: A student with Down Syndrome or another genetic or cognitive disorder might meet criteria in this category.
  • Orthopedic Impairment: OI refers to physical disabilities that impact access to education.
  • Hearing Impairment: Whether permanent or fluctuating, a hearing impairment may adversely affect a child’s educational performance.
  • Deafness: A student unable to process linguistic information through hearing, with or without amplification, may be eligible for services under this category.
  • Deaf blindness: A combination of hearing and visual impairments establishes a unique set of special education service needs.
  • 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.
  • Traumatic Brain Injury: Brain Injury Alliance of WA is a place for resources to better understand TBI and how to support a student with medical and educational needs.
  • 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.

Child Find requires school districts to evaluate

Appropriate evaluation is a key principle of the Individuals with Disabilities Education Act (IDEA). The IDEA includes a mandate called Child Find, which requires school districts to seek out, evaluate and serve students ages Birth-21 who have known or suspected disabilities that may impact school success or access. PAVE has an article about the Child Find Mandate, which applies to all children, including those who go to public or private schools. Children who are homeless or wards of the state are included, as are children who move a lot. Children who are “advancing from grade to grade” are included in the mandate, if they may have disabilities that impact learning in non-academic areas of school.

Here are some considerations:

  • Child Find mandates evaluation if there is reason to suspect a disability.
  • Students who are failing or behind their peers might have challenges related to language or access to school that don’t indicate a disability.
  • Parents who don’t understand the school’s reason can request a written explanation.
  • Schools cannot refuse to evaluate because of budgetary constraints. They also cannot refuse because they want to try different teaching strategies. School staff might use the term Response to Intervention (RTI). Although the school might benefit from a review of its methods, RTI is not a basis for refusing to evaluate a child for a suspected disability.

Deadlines start when a referral is made

When a student is referred for an evaluation, the school follows a schedule of deadlines. Parents can mark a calendar to track these timelines. To make sure deadlines are followed, PAVE recommends that formal requests and communications are made and stored in written form. Parents can always request a written response from the school or write down a response made verbally and send a “reflective” email that includes detail about what was discussed or decided. That reflective email creates a written record of a conversation.

Districts have 25 school days to respond to a request for evaluation. Some schools invite parents to a meeting to discuss concerns. Being prepared with a written statement can help. Parents can also share information from doctors or outside providers.

Before a school evaluates a student, the parent/guardian signs consent. If school staff recommend an evaluation and parents do not agree or sign consent, then the school does not conduct the evaluation. Please note that parents are consenting to the evaluation, so that parents and schools can make an informed decision about what to do next. Parents can choose at the next step whether to sign consent for a special education program to begin.

If a parent initiated the referral and the school doesn’t respond or denies the request for an evaluation, the parent can request an answer in writing. PAVE provides an article about what to do if the school says no to your evaluation request.

What happens next if the school agrees to evaluate?

If all agree that an evaluation is needed, and a parent/guardian signs a formal document giving permission, then the school completes the evaluation within 35 school days.

In compliance with the IDEA, an evaluation for special education is non-discriminatory. If the child cannot read, for example, the testing uses verbal instructions or pictures. The child’s native language is honored. Schools have a variety of tools available to eliminate bias. Parents can take action if they disagree with the way testing was done or the way it was interpreted.

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.

Don’t be intimidated by fancy language!

The formal language of the IDEA and the evaluation process can feel intimidating, but parents need to remember that they have a critical role as the experts and long-term investors in their child. If the evaluation data is confusing, parents can ask the school to provide charts or graphs to make it clear. Parents have the right to ask questions until they understand the evaluation process and what the results mean.

A primary goal of evaluation is to identify a child’s strengths and needs in the general education environment. Regular classrooms are the Least Restrictive Environment (LRE) unless a student is unable to succeed there. The evaluation determines whether a student needs extra help in the general education setting, and the IEP team uses information gathered through evaluation to recommend and develop an initial program.

The IEP isn’t a one-and-done project

The IEP shifts and changes with the needs of the student, so the initial evaluation is only the beginning. A new evaluation is required by the IDEA at least every 3 years, but a new evaluation can be initiated earlier if there’s a question about whether the program is working. The school and family are always collecting new information and insights, and the IEP adapts in real time with new information.

For example, the school might document that a student is failing to access learning in general education despite help that was carefully designed to make the setting accessible. Then the IEP team, which includes a parent or guardian, might discuss placement in a more restrictive setting.

What if I don’t agree with the school?

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. PAVE provides an on-demand webinar about conflict engagement: Parents as Partners with the School.

Recommended guidelines for requesting an evaluation

Make the request in writing! PAVE provides a sample letter to help.

  • Address the letter to the district’s special education director or program coordinator.
  • Deliver the request by email, certified mail, or in person. To hand-deliver, request a date/time stamp or signature at the front office to serve as a receipt.
  • Track the days the district takes to respond. The district has 25 school days (weekends and holidays excluded) to respond.

Items to include in the referral letter:

  • The student’s full name and birthdate.
  • A clear statement of request, such as “I am requesting a full and individual educational evaluation for [the student].”
  • A statement that “all areas of suspected disability” be evaluated.
  • A description of concerns. Include any details provided by the student about what is working or not working at school, during transportation or related to homework. Consider all areas of school, not just academic ones.
  • Include any detail about past requests for evaluation that may have been denied.
  • Attach letters from doctors, therapists, or other providers who have relevant information, insights, or diagnoses (NOTE: medical information is offered voluntarily and not required to be shared).
  • Parent/legal caregiver contact information and a statement that consent for the evaluation will be provided upon notification.

After receiving a letter of request for evaluation the school district has the responsibility to:

  • Document the referral.
  • Notify parent/caregiver, in writing, that the student has been referred for evaluation.
  • Examine relevant documents from family, the school, medical providers, and other involved agencies.
  • Tell parents/caregivers in writing, within 25 days, about the decision to evaluate or not. This formal letter is called “Prior Written Notice.”
  • Request formal written consent for an evaluation.
  • Complete the evaluation within 35 school days after consent is signed.
  • Schedule a meeting to share evaluation results with a team that includes family to determine next steps.
  • Initiate development of an IEP, if the student qualifies.

Evaluation for Behavior Supports

Sometimes a Functional Behavior Assessment (FBA) is conducted alongside an educational evaluation when behavior is a primary feature of a child’s difficulty at school. The FBA uses tools and observation to identify triggers and unskilled coping strategies that can help explain areas of need for learning. The FBA provides the foundation for a Behavioral Intervention Plan (BIP), which supports positive choices. BIP goals and strategies prioritize social skill development and emotional regulation tools. The BIP can be a stand-alone document or can be used with an IEP or a Section 504 Plan (see below). PAVE provides a variety of articles about Positive Behavior Interventions and Supports.

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.

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. Note that Section 504 anti-discrimination protections apply to students with IEPs and Section 504 Plans. Key protections provide for equitable opportunities, access and non-discriminatory policies and practices. These protections might be part of the discussion if a student, because of disability, is denied access to a field trip, extracurricular opportunities, a unique learning environment or something else that is generally available to all students.

Section 504 includes specific provisions to protect students from bullying related to disability conditions: A US Department of Education Dear Colleague letter about bullying describes those protections as an aspect of a school district’s responsibility to provide FAPE.

Independent Educational Evaluation (IEE)

If families disagree with the school district’s evaluation, they can request an Independent Educational Evaluation (IEE). When granting a request for an IEE, the school district provides a list of possible examiners and covers the cost. To deny an IEE request, the district initiates a due process hearing within 15 calendar days to show that its initial evaluation was appropriate. PAVE provides an article with more information and a sample letter for requesting an IEE.

Here are additional resources:

Washington laws regarding evaluation are in 392-172A, 03005-03080, of the Washington Administrative Code (WAC)

Office of Superintendent of Public Instruction (OSPI): k12.wa.us

PAVE’s Parent Training and Information (PTI) team provides 1:1 support and additional resources. Here are ways to Get Help:

Call 1-800-5PARENT (572-7368) and select extension 115, English or Spanish available, to leave a dedicated message.

OR

Go online to fill out a form to Get Help! Use the Google translate to make it to the language you use the best!

Exceptional Family Member Program (EFMP)

The Exceptional Family Member Program (EFMP) is a mandatory* Department of Defense program that helps military dependents with special needs. The Coast Guard, which operates under the authority of the Department of Homeland Security has a similar program called the Special Needs Program, or SNP.

* EFMP is mandatory, primarily so a family member’s needs may be considered during the duty assignment process. However, some families do not enroll because they believe the program requirements are not worth the benefits to them, or they perceive the program as limiting the service member’s duty assignment options, and thus his or her career.

EFMP Family Support staff, along with an installation’s School Liaison, are the primary points of contact for parent centers for holding installation-based trainings, access to meet with families on installations, and insider information about installation support programs and family engagement.

Note: although the purpose of the EFMP and the 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 funding.

EFMP Functions

  • Identification and enrollment is a collaborative effort among military-connected health care providers and EFMP staff:
    • Example: a child is identified as having a particular disability by the family’s regular medical provider who refers the family to the EFMP enrollment office.
  • Military duty assignment coordination: once a family member is enrolled in the program, future duty assignments for the military service member are considered in the light of that family member’s medical or educational needs.
    • For example, if a child is enrolled in EFMP due to the need for speech and occupational therapy, the service member’s projected duty station will be screened to see if these services are available.

Notes: although the family member’s needs are considered in the assignment process, military requirements take priority for assignment decisions and there are no guarantees that services and supports are available at a new duty location.

The EFMP assignment process does not consider the availability of educational instruction, supports and services under an IEP as part of the assignment process, only military benefits and programs such as medical coverage, respite care, ABA therapy, mental health care and the like. It is also clear that a service being “available” does not mean the family won’t encounter a waiting list for these services, or providers who are no longer taking clients or patients.

  • Family Support: this is the EFMP function which directly serves EFMP families and is the most common point of contact for parent centers. Staff are civilians who work for the military. Contact information for EFMP Family Support is available on [our Interactive Maps.]
    • Provides non-medical case management
    • Assists with navigating the Department of Defense medical, transport, legal, and counseling systems.
    • Provides information about local civilian services and supports
    • May arrange support groups, classes, and family events for the benefit of EFMP families assigned to their installation.
    • On some installations, EFMP Family Support may also provide access and financial support for respite care.

Who is eligible for EFMP?

Active duty personnel with family members who have special health* or educational needs may be eligible. National Guard and Reserve personnel with family members who have special health or educational needs may be eligible during the time period when the service member is called for active federal duty. For EFMP ROC (below), National Guard and Reserve family members may have a consultation without their service member being called to active duty.

*requiring specialized care beyond the level of their general practitioner

Getting enrolled in EFMP:

Enrollment typically begins with the family member’s health care provider. This can be either the primary care manager or a specialty care provider that is military-connected. For additional information regarding the EFMP, families can contact EFMP coordinators, EFMP liaisons, EFMP system navigators, or family resources coordinators depending on their branch of service. Coast Guard parents may contact a Family Special Needs Case Management Officer.

Getting the most benefit from EFMP

It’s important for families to contact the current installation’s EFMP Family Support Office in these situations:

  • To update the child’s EFMP file every three (3) years
  • The parent has new medical or educational information about their child
  • The service member is assigned to a new duty station (PCS) to make certain that paperwork on the Exceptional Family Member is up-to-date and to facilitate services and supports through the new duty station’s EFMP Family Support office.
  • Transportation needs for their child or youth enrolled in EFMP
  • Issues with military services and supports, or expected services and supports are not available
  • Finding resources at the state and local levels (including parent centers!)
  • Accessing state and federal benefits for which the Exceptional Family Member may be eligible

EFMP ONLINE AND BY PHONE FOR FAMILIES:

EFMP Navigation Checklist Tool  EFMP & ME -“EFMP & Me is here to help you effectively navigate through the Department of Defense’s vast network of services and support for families with special needs.”

EFMP ROC program

EFMP Resources, Options and Consultations” (EFMP ROC) is a new program that provides military families who have members with special health or educational needs with enhanced services.  Special needs consultants are available by appointment, via phone or video at no cost, and there is no limit to the number of appointments families can make.

  • Supplements installation-based EFMP Family Support
  • Highly useful for remote families such as National Guard and Reserve. The service member does not need to be called to active duty for these families to use EFMP ROC.
  • Extended-hour appointments add convenience
  • Can be used for cross-referrals to EFMP Family Support when a family plans a move to a new installation

Families can ask for assistance with:

  • Exploring education options
  • Special Education-will refer families to Parent Training and Information Centers (new!)
  • Healthcare and TRICARE (military) programs for individuals with disabilities
    • -including local medical care and services—with the support of a dedicated TRICARE specialist
  • Federal and state benefits for individuals with disabilities
  • Connecting to military and other child care, support groups, in-home care, and deployment support options
  • Special needs trusts and estate planning
  • Referrals to legal help for disability issues

Military families can connect with EFMP-ROC through Military OneSource or by calling 1-800-342-9647.  Appointments can be made 24 hours a day, 7 days a week. Consultants have extended (evening) hours for appointments.

Autism Spectrum Disorder: Information and Resources for Families

A Brief Overview

  • A short YouTube video by Osmosis.org provides an overview of Autism Spectrum Disorder (ASD).
  • A medical diagnosis of autism is not required for school-based evaluations or interventions. Read on for more information.
  • 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.
  • To encourage early screening for ASD, the Centers for Disease Control and Prevention (CDC) provides a 2-page tracking chart of developmental markers for children Birth-4.
  • The University of Washington Autism Center provides a collection of resources in categories that include online tools, early recognition, service organizations, and neurodiversity.
  • Information about early screening recommendations and state-specific guidance is available from the Washington Department of Health (DOH).
  • Help navigating medical systems is available from PAVE’s Family to Family Health Information Center. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

Full Article

Parents of children with autism have many different experiences when watching for their baby’s first smile, their toddler’s first steps, emerging language, or their child’s learning in playtime or academic areas. When developmental milestones aren’t met in typical timeframes, families may seek a diagnosis, medical interventions, and/or supports from school.

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.

Self-advocates in the Autistic community celebrate diversity

Much of the Autistic community rallies to honor neurodiversity, uplift the voices of self-advocates, and forward the movement of civil and social rights. “Nothing About Us Without Us” is part of the disability rights movement supported by The Autistic Self Advocacy Network (ASAN), which shares resources by autistic individuals with lived experience for people who have autism spectrum disorders. ASAN created an e-book, And Straight on Till Morning: Essays on Autism Acceptance, as part of Autism Acceptance Month 2013. The agency also provides a welcome kit for newly diagnosed individuals: Welcome to the Autistic Community!

What is Autism Spectrum Disorder (ASD)?

Autism is referred to as a “spectrum” disorder, 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. Examples include 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.

Signs and Symptoms

People with ASD may have problems with social, emotional, and communication skills. They might repeat certain behaviors or have rigid ideas about routines. Signs of ASD begin during early childhood and typically last throughout life. The CDC recommends that families seek early intervention if there are concerns about how a child plays, learns, speaks, acts, and moves.

Here are a few examples of some ASD symptoms:

  • Not pointing at objects, such as an airplane flying overhead, or looking when someone else points
  • Avoiding eye contact
  • Trouble understanding or expressing feelings
  • Not wanting to be held or cuddled
  • Repeating or echoing words, phrases, or actions
  • Not playing “pretend”
  • Unusual reactions to the way things smell, taste, look, feel, or sound

Diagnosing ASD can be difficult since there is no specific medical test. Doctors look at the person’s behavior and development to make a diagnosis. The CDC says a diagnosis from a credible professional by age 2 is considered very reliable.

How to seek a diagnosis

Medical diagnoses in Washington are provided by Autism Centers of Excellence (COEs). Many of these centers provide access to Applied Behavioral Analysis (ABA) therapy, an intervention that is helpful for some individuals with ASD.

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.

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 a two-page tracking chart of developmental markers for children Birth-4.  Further information about these recommendations is available from the Washington Department of Health (DOH).

CDC numbers show that 1 in 88 children have ASD. According to Washington’s DOH, about 10,000 of the state’s children have ASD. An Autism Task Force has been at work since 2005 to promote early screening and intervention. In collaboration with DOH and other agencies, the task force in July 2016 published the downloadable Autism Guidebook for Washington State.

The guidebook includes information for families, care providers, educators, medical professionals, and others. It includes an extensive Autism Lifespan Resource Directory. Diagnostic criteria and special education eligibility criteria are described, as are specifically recommended interventions.

Getting help at school

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.”

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.

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.

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:

  1. The student has a disability
  2. The disability significantly impacts access to education
  3. 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.

Resources related to ASD

Resources for families, teachers, and medical providers supporting individuals with autism are vast. 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.

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.

PAVE’s Family-to-Family Health Information Center (Family Voices of WA) provides support to families navigating various healthcare systems related to disability. Fill out a Helpline Request for direct support or visit the Family Voices of Washington website for further information and resources.

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

Another place to seek help with questions related to medical and/or insurance services is the Washington Autism Alliance (WAA). 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.

WAA is sponsoring a virtual Day Out for Autism April 24, 2021, with family-friendly Facebook Live events starting at 10 am.

Adolescent Health Care Act Provides Options for Families Seeking Mental Health and Substance Use Help for Young People Resistant to Treatment

A Brief Overview

  • The Adolescent Behavioral Health Care Access Act, passed into law by the Washington Legislature in 2019, gives parents and providers more leverage in treating a young person who will not or cannot independently seek medical help for mental illness and/or substance use disorder.
  • The Washington State Health Care Authority (HCA) hosts website links with information about the new law, which allows Family Initiated Treatment (FIT). The landing page includes an email address: hcafamilyinitiatedtreatment@hca.wa.gov.
  • Enactment of FIT is a project of the state’s Children and Youth Behavioral Health Work Group. CYBHWG supports several sub-work groups, including one focused on school-based services and suicide prevention. Information group membership, public meetings, resources, events and training is available through a dedicated HCA website page.
  • A place to connect with other families concerned about these topics is a Facebook group called Youth Behavioral Healthcare Advocates (YBHA-WA).
  • If a person ages 15-40 is newly experiencing psychosis, Washington offers a wraparound-style program called New Journeys. This website link includes access to a referral form.

Full Article

Getting mental health help for a youth in crisis can be complicated, frustrating, and frightening.

Mental Health America ranks states based on the incidence of mental illness and access to services. The 2021 youth rankings list Washington 35th in the nation. Various measures indicate a high prevalence of major depression, substance use disorder, and/or emotional disturbance as a category of disability on the Individualized Education Program (IEP). Barriers to treatment consider insurance as well as availability of services.  

The 2021 indicators show Washington has risen since 2020, when the youth ranking was 43rd nationally. However, overall statistics are dire, indicating the COVID-19 pandemic has worsened mental healthcare conditions and treatment access across all age groups and states. “Youth mental health is worsening,” the data shows. “Even in states with the greatest access, over 38 percent are not receiving the mental health services they need. Among youth with severe depression, only 27.3 percent received consistent treatment.”

Sometimes a barrier to treatment involves a complicated balance of youth autonomy and parental responsibility. The most severe psychiatric conditions often include a symptom called anosognosia, which blocks the brain’s ability to see the impairment or understand why professional help could be of benefit. In youth whose brains are still forming, symptoms that impact insight and choice-making are particularly problematic.

New Journeys is an option when psychosis is present

Sometimes anosognosia co-occurs with psychosis, which indicates a person has lost touch with reality. Delusions and hallucinations may be present. If a person is newly experiencing psychosis, Washington offers a wraparound-style program called New Journeys: This link provides access to information for clients and families and includes an online referral form.

Causes of psychosis are the subject of ongoing research, but some theories suspect the brain is trying to make sense out of a world that does not make sense. Synapses fire errantly, and the brain tries to organize them into stories to calm itself. Synaptic loops get built during these firestorms of neural activity, and the stories that emerge become reality to the person whose brain is narrating the experience, even if they are untrue or grounded in false perceptions. Choice-making in the empirical world is often compromised.

Family education about psychosis is an aspect of New Journeys, which is for youth and adults ages 15-40 who have experienced psychotic symptoms for more than or equal to 1 week and less than or equal to 2 years. Staff from the University of the Washington contribute support to the state’s New Journeys program, which is offered in various but not all regions of the state.

UW staff also support a program called Psychosis REACH, which provides evidence-based skill-building for relatives and friends of individuals with psychotic disorders. The practices are based in cognitive behavioral therapy (CBT). The program’s website includes information about training opportunities and resources.

Age of Consent in Washington is 13

In Washington State, the age of medical consent is 13. That means that a person 13-17 years old can independently seek medical treatment, without the consent or knowledge of parents.

Age of consent laws also have meant that Washington youth could say no to behavioral health treatment, regardless of whether parents and providers agreed that such treatment was necessary to protect the safety and well-being of the adolescent. Exceptions are made when there is a threat of imminent danger or grave disability due to psychiatric deterioration. Read on for more information about involuntary treatment/commitment.

The Adolescent Behavioral Health Care Access Act, passed by the Washington legislature in 2019, gives parents and providers more leverage when a young person is struggling with behavioral health and does not independently engage with treatment. The law allows parents/caregivers to bring a youth, ages 13-17, to a provider for evaluation without requiring consent from the youth. The law includes elements introduced by the state Senate and House of Representatives, which originally titled the bill as HB 1874. In 2020, passage of HB 2883 added residential treatment as an additional option under Family Initiated Treatment (FIT).

The law does not limit an adolescent’s ability to initiate treatment on their own.

Parents have felt shut out of their teenager’s care

January 8, 2020, article in Crosscut profiles several families impacted by the new law. “Until the new law,” the article states, “parents often were shut out of their teenager’s care and treatment plans and couldn’t push a teen toward necessary outpatient or inpatient care without their consent.”

Passage of FIT marks a win for the Children and Youth Behavioral Health Work Group, which studied and reviewed recommendations from a stakeholder advisory group authorized by the 2018 legislature. Final language in the law was impacted by family members, youth, clinicians, hospital staff and many others who met dozens of times.

“Parent” is broadly defined, and information sharing is more open

Under the law, the definition of parent is expanded to include a wide range of family caregivers, guardians and others who have authority to initiate treatment. The Revised Code of Washington (RCW 9A.72.085) provides standards for “subscribing to an unsworn statement” that can apply to a caregiver initiating treatment. 

The law enables providers to share information with parents without an adolescent’s consent, if the provider determines that information sharing with family is in the best interests of the adolescent patient. A list of information-sharing guidelines is included below.

Note that parents retain the right to make medical decisions for children younger than 13, and adults 18 and older are responsible for medical decision-making if there is no guardianship.

In accordance with RCW 71.34.375, providers are required to provide notice to parents of all available treatment options, including Family Initiated Treatment. The state Health Care Authority provides a fact sheet to clarify those requirements.

Family-Initiated Treatment (FIT)

The FIT law allows a parent/caregiver to escort their adolescent child to certain licensed behavioral health facilities and request that a professional person examine the adolescent to determine whether treatment is medically necessary. That treatment might include outpatient, inpatient, or residential care.

According to the Health Care Authority (HCA), FIT is not a guarantee of immediate services and no provider is obligated to provide services under FIT. Each provider has processes, procedures, and requirements pertaining to evaluation and admission to services. However, the only reason for not providing services cannot be the youth’s lack of consent (RCW 71.34.600).

If a facility covered by this law does not have a professional person available to perform the examination, the facility is not required to make staff available on demand. Additionally, if the professional determines the adolescent needs in-patient treatment but the facility does not have a bed available, the facility is not required to make a bed available. Included are those facilities that house children and youth under the Children’s Long-term Inpatient Program (CLIP). CLIP beds are generally subject to a waiting list and a multi-step referral process.

According to staff at Washington’s Health Care Authority, the COVID-19 pandemic and capacity limitations within the behavioral health system have hindered many providers from fully developing processes to implement the law. Families are encouraged to contact providers before taking an adolescent to a facility to determine if the provider has the capacity or ability to perform an assessment.

FIT in a community setting

If medical necessity is found by an outpatient provider who evaluates a young person brought into care through FIT, the provider is limited to 12 sessions over 3 months to attempt to work with the adolescent. If the young person still refuses to engage with treatment, then the period of Family-Initiated Treatment with that provider ends. The family at that point could seek treatment elsewhere.

State laws continue to encourage autonomy for young people, despite recognition that family involvement is important. According to the Revised Code of Washington (RCW 71.34.010):

 “Mental health and chemical dependency professionals shall guard against needless hospitalization and deprivations of liberty, enable treatment decisions to be made in response to clinical needs in accordance with sound professional judgment, and encourage the use of voluntary services. Mental health and chemical dependency professionals shall, whenever clinically appropriate, offer less restrictive alternatives to inpatient treatment. Additionally, all mental health care and treatment providers shall assure that minors’ parents are given an opportunity to participate in the treatment decisions for their minor children.”

For children and youth with Medicaid, the Wraparound with Intensive Services (WISe) program is Washington’s most intensive option for outpatient care. The Health Care Authority (HCA) maintains a website page with information about WISe in multiple languages. Families can discuss their options for FIT with WISe staff and leadership at HCA.

FIT in a hospital setting

An inpatient or residential facility can detain the adolescent under Family-Initiated Treatment (FIT) if medically necessary for a mental health condition. In these settings, FIT may last up to 30 days. Then the adolescent must be discharged, unless:

  • they agree to stay voluntarily, or
  • a designated crisis responder (DCR) initiates involuntary commitment proceedings

The Involuntary Treatment Act (ITA) can apply to persons of any age who are determined to be gravely disabled or at imminent risk of harm to self, others, or property. Under Ricky’s Law, community members of any age who are a danger or gravely disabled due to a drug or alcohol problem may beinvoluntary detained to a secure withdrawal management and stabilization facility—also known as secure detox.

For substance use disorder treatment, due to Federal Privacy Laws, a parent/caregiver can only provide consent for an assessment. The youth would have to consent to the results of the assessment being shared with their parent/caregiver and volunteer for ongoing treatment if it is deemed medically necessary.

Guidance for Information Sharing

Federal law, 42 CFR Part 2, restricts information sharing related to substance use, and clinicians cannot share that information without a patient’s written consent, regardless of whether the substance use co-occurs with mental illness.

Providers have discretion in determining what information about mental health diagnoses and treatment is clinically appropriate to share with parents of an adolescent 13-17. A provider retains discretion in withholding information from family/caregivers to protect an adolescent’s well-being. In general, however, the Adolescent Behavioral Healthcare Access Act encourages sharing information to support collaboration between the clinical setting and home. Specifically, providers and families are encouraged to discuss:

  • Diagnosis
  • Treatment Plan and Progress
  • Recommended medications, including risks, benefits, side effects, typical efficacy, dosages, and schedule
  • Education about the child’s mental health condition
  • Referrals to community resources
  • Coaching on parenting or behavioral management strategies
  • Crisis prevention planning and safety planning

To support family caregiving for individuals of all ages, the Washington State Hospital Association provides general guidance about exceptions to federal confidentiality laws (HIPAA): Permitted disclosures of mental health information and substance use disorder information without patient consent.

Resources

The  Health Care Authority (HCA) provides a range of information about behavioral health services for children and youth, including this downloadable resource: Parent’s Guide to Family Initiated Treatment.

Families can direct specific questions to: hcafamilyinitiatedtreatment@hca.wa.gov. Please note that this business email is not intended for crisis response.

An agency called CaseText organizes links related to Family Initiated Treatment for direct access to various statutes.

Tips for Communicating as a Member of the IEP Team

A Brief Overview

  • When families and schools meet to discuss a student’s special education program, they can find Common Ground by remembering that everyone wants the student to receive a Free Appropriate Public Education (FAPE).
  • Two short videos, A Tale of Two Conversations, provide a quick look at how a meeting might feel like one long argument or a helpful collaboration. The difference starts with preparation and approach.
  • Read on for tips about getting ready for a collaborative meeting.
  • The Office of Superintendent of Public Instruction (OSPI) also provides information about parent and student rights.

Full Article

Whether on Zoom or around a conference table, sitting down with a team of professionals can feel intimidating to families. When a child’s Individualized Education Program (IEP) is on the agenda, emotions can overtake a meeting. Getting defensive or angry does not usually help, however. This article provides tools for staying organized, open minded, and on topic to improve the work of meetings—and student outcomes.

A basic special education vocabulary boosts empowerment, and empowered families generally feel more confident at their meetings. Here is a key word to know:

Free Appropriate Public Education (FAPE)

A student with an IEP has the right to FAPE. That right is protected by federal law—the Individuals with Disabilities Education Act (IDEA). To meet the standard of FAPE, special education services are accessible to the student. Accessible means the services work as designed to enable progress appropriate, in light of the child’s circumstances.

A student receiving FAPE with appropriate, accessible services demonstrates steady progression toward mastery of skills. Those skills are being taught with specially designed instruction (SDI). As skills are learned, progress is measured through goal tracking. Meaningful progress indicates that the student is accessing FAPE.

Mastery can enable a sense of belonging. When the student feels capable, connected, and responsible within the school community, things generally run more smoothly for everyone.

In other words, FAPE is the result when everyone works together for the benefit of the student and meaningful learning happens. When a student is successful, the IEP team has done its job well and everyone can celebrate!

Here is a more formal way to talk about FAPE: Under the IDEA, FAPE requires an IEP reasonably calculated to provide progress appropriate, in light of the child’s circumstances.

FAPE provides a place to begin

When families and schools meet to talk about a child’s services, everyone can begin with FAPE as the overarching goal. FAPE provides Common Ground for the discussion. Everyone on the team wants FAPE:

  • The school district is required by law to provide FAPE to IEP-eligible students.
  • Teachers are happy when their students are successful.
  • The family wants a child to learn in a meaningful way.
  • The student wants to feel confident and proud.

Common Ground is not always where meetings begin

Problems arise in meetings when school staff and/or family members start the conversation far from Common Ground. The Center for Appropriate Dispute Resolution in Special Education (CADRE) has designed a curriculum to support families and schools in their discussions. Two short videos, A Tale of Two Conversations, provide a quick look at how a meeting might feel like one long argument or a helpful collaboration. The difference starts with preparation and approach.

To avoid a meeting that feels like a fight, the parent may want to start the meeting with some general comments to help school staff better understand the student and to gently remind the team that years of parenting have led to some expertise about a specific child.

For example, an IEP or a behavior plan might say that a student is “defiant” or “refusing” to do work. Those types of statements can make a parent feel defensive. Showing up angry probably will not lead to a productive meeting. Instead, a parent may come to the meeting prepared to explain that the student lacks confidence and would rather appear defiant than “stupid.” Maybe the parent has been able to talk to the student about their frustrations and can bring statements or requests directly from the student.

Another way to find common ground is to prepare open-ended questions and bring those to the table first, before offering suggestions or requests. For example, if a parent shows up and demands a 1:1 right at the start of the meeting, the conversation might quickly devolve into an argument about resource problems. If a parent comes ready to talk about what is not working for the student and concerns for their child’s learning and well-being, there is an opportunity to build empathy and problem-solving.

Climb mountains as a team

Firm predetermined “solutions” from any side can position school staff and family members far from collaboration, like the peeks of two mountains unable to ever meet in the middle.

Consider collaborative problem-solving as a project that starts at the intersecting bases of two mountains, on Common Ground. Shared expectations and assumptions are a good place to begin for an open-minded discussion. Here are a few conversation starters to consider:

  • According to these progress reports, the student is getting good at … How might we use that emerging skill to scaffold skill-building in this other area?
  • My student is not making as much progress as I expected in this area… Can we talk about strategies for improving progress?
  • This assignment, grade, or record shows that the student struggles to … Is there another approach to services or placement that we have not considered yet as a team?
  • I notice that this IEP goal is written to help the student “stop” doing an unwanted behavior. Can you help me understand the skill that is being taught, and can we rewrite the goal to focus on measuring progress toward the expected skill or behavior?
  • From what I see here (data/evidence/observations), this service is not working or is not accessible to the student. My theory about this is… Does anyone here have a different theory about what might be going on?

Here are some big-picture concepts for productive collaboration:

  • Trust is at the heart of positive working relationships.
  • Family members and educators can develop trust by showing personal regard, respect, transparency, and integrity. These may be particularly important for trust to grow among people of different cultures.
  • Blaming, bringing up the past repeatedly, minimizing another’s opinion, or rushing a conversation can create barriers to collaboration.
  • A neutral third party may be needed to resolve issues and rebuild relationships.

Prepare for the meeting

Request any documents that are going to be discussed at the meeting ahead of time. Review the documents in preparation for the meeting and mark down any notes for discussion. Whether meeting to discuss an IEP, a Section 504 Plan, behavior, ancillary services, or something else, families are better served when they prepare. To help families organize their concerns and requests, PAVE offers a format for designing a Handout for the Team Meeting. An alternative version supports self-advocates: Students: Get Ready to Participate in Your IEP Meeting with a Handout for the Team.

Leave with an action plan

At the end of the meeting, review what has been decided and be sure to make notes about any action steps, deadlines, or assignments. Be sure to note:

  1. What is the action?
  2. When will it happen?
  3. Who is responsible?

Schedule a follow-up conversation or a plan to communicate about anything that is not firmly decided. After a formal meeting, the school sends parents a Prior Written Notice (PWN) to describe any changes being made to a student’s services and when those changes will take effect. Parents with their own notes about the action plan will better understand how to read the PWN and whether there are unresolved topics.

Procedural Safeguards provide additional options

If a meeting leaves too many issues unresolved, parents can review their procedural safeguards to make a choice about what to do next. A copy is offered by the school at all formal meetings, and parents can also request a copy any time. The Office of Superintendent of Public Instruction (OSPI) also provides information about parent and student rights.

Parents have the right to disagree with the school and to pursue resolution by:

The collaboration strategy being explained. Meet on common ground. A depiction of two mountains are shown, one represents family and the other mountain represents the school. Both family and school push against each other to form a smaller overlap triangle called FAPE - that represents the common ground.

Home for the Holidays: The Gift of Positive Behavior Support

A Brief Overview

  • This article provides examples and simple guidance about how to be more strategic in parenting a child who struggles with behavior—during the weird winter of 2020 and beyond.
  • 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. Holiday season 2020 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 given the pandemic,” Schmitz says. “Families, like educators, need to go back to the basics during times of stress and uncertainty. 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. Never before have routines, regulation, relationships, and reinforcement been more important for everyone in the family than they will be this winter.”

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
  2. Provide many opportunities for practice
  3. 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 and pandemics—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 in order 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:

COVID-19 Handbook and Family Binder (multiple language options) from the Autism Intervention Research Network on Behavioral Health (airbnetwork.org)

The Comprehensive, Integrated Three-Tiered Model of Prevention (ci3t.org) provides videos and other COVID-Related Resources for Families in English and Spanish

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