Holiday Survival Tips For Families with Special Healthcare Needs

A Brief Overview 

Every family experiences holidays and end-of-year transitions differently. This article provides a sampling of ideas for families with children experiencing special healthcare needs. If a child also experiences behavioral difficulties, you may wish to read Home for the Holidays: The Gift of Positive Behavior Support 

Here are some quick takeaways: 

  • Keep to your everyday schedule and routine as much as possible to minimize medical and behavioral impacts. 
  • Add fun with home-based holiday activities and traditions tailored to your family’s needs or select family or group activities which work with your child’s medical needs. 
  • Plan and save surprises too: Mix up the activities so children can help with some planning and enjoy a few surprises. 
  • Plan for health and safety if travel is on the schedule
  • Families need a village: Help is a present, but sometimes you must ask for what is on your list. 
  • Gratitude is a gift: Moments of thankfulness calm the mind. For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Full Article 

Decide Which Routines and Schedules Might Be “Holiday Flexible” 

Many children with disabilities rely on schedules, either as a coping strategy or for medical reasons. It is critical to keep your child on schedule during the holidays as much as possible. This may mean leaving an event early or arriving later to accommodate tube feedings or respiratory treatments. It may mean putting your child to bed on time, even at Aunt Sally’s midnight party.” -Susan Agrawal, complexchild.org 

If your family can accommodate a bit more flexibility, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun holiday flavor. For others, sleeping in or staying in jammies longer than usual might create a relaxing holiday feel. Be sure to call out these relaxed rules as holiday specials so everyone understands they are temporary changes and part of the “break.” 
 
Add Fun 

Families might set aside, or add onto ordinary routines, to: 

  • Bake 
  • Sing 
  • Read special stories 
  • Play games together 

On its website, WestEd.org, a California non-profit, provides a guidebook for families staying home for health and safety reasons: Caring for Young Children While Sheltering in Place.  Activity videos (story-based yoga, for example), easy-to-learn songs, arts-and-crafts, sensory play, and cooking with kids are among offerings for developmentally appropriate activities.  

Understanding your child’s healthcare needs and vulnerabilities can help with deciding which activities are right for your family.  

  • Drive-through light shows, and streaming concerts, theater, and holiday events are options in some areas that won’t expose a medically vulnerable child to other people’s germs. 
  • If weather and your family’s needs permit, outdoor holiday activities with groups of people are less likely to spread illness as we all learned during the height of the COVID-19 pandemic. Think of tree lightings, caroling, snow-sculpture or snowman-making events, and of course winter sports, if appropriate, for your child and family. 
  • One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s travel on Christmas Eve and has kid-centered games and songs. 

Finding the “just-right” amount of holiday celebrating can be tricky, so keep the Three Bears/Goldilocks principle in mind. For children who understand this theme, families can use the classic story to talk about how everyone makes choices about what is the “just right” amount of celebrating, eating, screen time, sleeping. 

Plan and Save Surprises Too 

A theme for the year can add a new flavor to family traditions. Here are some suggested themes: 

  • How I celebrated when I was a kid. 
  • Christmas 1821, 1721, etc. 
  • Holiday food, decorations, stories, music, etc. from another culture. 

The family can research the theme together to come up with ideas and activities. A theme night might include a chance for each family member to share something or lead an activity. On story night, each person might share a favorite holiday memory or a made-up story. If extended family want to take part, a video conference might be an added element to the evening. 

Adults can set aside a few ideas to save for in-the-moment surprises to sprinkle in. A prize, special treat, well-told joke, customized family game, or a surprise “guest” on the phone are a few ideas to plan out in advance. 

Travel 

For families choosing to travel, bags with medication and equipment still need to include masks, hand sanitizer, and sanitizing wipes. Even with mask mandates mostly a thing of the past, it’s sensible to have these on hand for crowded airports and planes and visiting more vulnerable, elderly relatives.  

If plans include planes and trains, be sure to let agents and attendants know about a family member’s special accommodation needs.  

  • Washington travelers can make preflight preparations from Sea-Tac Airport by sending an email to the Sea-Tac Airport customer service.  
  • The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services
  • TSA Cares is designed to aid travelers with disabilities with TSA screening procedures. Call them at 855-787-2227 (8 AM to 11 PM Eastern Time M-F, and 9 AM-8 PM Eastern weekends and holidays). 

Sugary treats might impact planning for children with diabetes: An insulin pump might help during the temporary splurges so a child can enjoy the holiday without feeling too different or overwhelmed. 

Visions of sugar plums might need a different flavor for children with specific allergies or food sensitivities. Being prepared with substitutions may prevent a child from feeling left out. If someone else is doing the cooking, be sure to share about any severe allergies to make sure utensils and mixing containers do not get cross-contaminated. 

Families Need a Village 

No holiday is ever perfect, and unrealistic expectations can cause a celebration to sour. Communicating with relatives and friends can help: 

  • Make a “Gift Wish List” for your child with special healthcare needs to let relatives and friends know what gifts will be good for your child based on what they might need to avoid and what they can use and enjoy. Many large retailers (Target and Kohls, for example) carry lines of adaptive clothing and sensory products and toys. 
  • Ask for understanding and support from family and friends to reinforce positive messages and realistic expectations. Saying no might be important, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation. Or use the “No, but” strategy and offer an alternative such as a different time or activity. 
  • As always, remember to plan self-care, whether it is a soak in the tub, a special movie with popcorn, or simply a few pauses for five steady breaths. “Putting your own oxygen mask on first” will make you a stronger caregiver.  

Gratitude is a Gift 

Gratitude helps the mind escape from stress-thinking and move toward feelings of peacefulness and grace. Taking a few moments to mindfully reflect on something that brings joy, beauty, love, sweetness—anything that feels positive—can create a sense of ease. An agency called MindWise Innovations provides tips to practice gratitude during the holidays, including this one: Make a list of things you have instead of things you want.  

For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Susan Agrawal, writing on complexchild.org, reminds us “No holiday is ever going to turn out like you want it to, even if you have the most perfect storybook family in existence. Don’t expect perfection or anything even close to perfection. For some families, getting through the holidays may be as much as you can expect. For other families, changing holiday traditions may make the season not feel the same. That’s OK. Instead, try to find the blessings in the season, whether that means seeing family members or celebrating your child’s inch stones.”  

Additional Holiday Resources 

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

Home for the Holidays: The Gift of Positive Behavior Support 
 
https://wapave.org/holidays-can-hurt-when-trauma-is-present/10 Tips to Surviving the Holidays When Your Child is Medically Complex or Has a Disability 

Related 
 
Respiratory Disease Health Advisory 
 
Explore Adaptive Play with Your Child 

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

Full Article 

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

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

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

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

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

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

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

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

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

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

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

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

Here is an example: 

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

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

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

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

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

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

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

Make a list and check it twice: Prevention is key 

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

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

Respond quick as a wink: Reward replacement behavior 

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

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

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

Here are steps to help teach replacement behaviors: 

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

Praise a silent night 

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

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

All is calm: Intervene at the first sign of trouble 

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

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

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

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

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

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

Believe: Be a beacon for hope 

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

Here are a few points to review: 

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

Resources: 

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

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

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

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

Support a Child’s Resilience by Pointing to the Positive

Children learn best when they feel safe, relaxed, loved, and confident. Emotions that are the opposite can make learning a struggle.

Researchers who study Adverse Childhood Experiences, often referred to as ACEs, are flipping some of their work upside down to see what happens when children have Positive Childhood Experiences.

What their evidence shows is that healthy relationships, safe spaces, emotional intelligence, and feelings of belonging support HOPE—H.O.P.E. That acronym stands for Healthy Outcomes from Positive Experiences.

Here are some questions you can ask your child regularly to support HOPE. You might also make sure adults at school are asking questions like these, too.

  • Tell me, what is going well?
  • What is fun?
  • Where are you successful?
  • Can you tell me something that makes you proud?
  • Where do you feel like you belong?
  • Please, tell me something about how important you are.

Do you want to ask better questions that are more relevant for teenagers? Here are some examples to get you started: 

  1. Instead of asking “What went well for your child today?”, you could ask “What made you happy or proud today?” 
  1. Instead of asking “What did your child learn from a challenging situation?”, you could ask “Have you faced any difficulties recently, and how did you handle them?” 
  1. Instead of asking “What are your child’s strengths and how did they use them today?”, you could ask “What do you think you’re good at, and how did you show it today?” 
  1. Instead of asking “What are your child’s goals and what progress did they make towards them?”, you could ask “What are some things you’re working towards right now, and what steps have you taken to get there?” 
  1. Instead of asking “What positive things did your child notice in others or the world today?”, you could ask “Did you see anything that made you feel hopeful or inspired today?” 
  1. Instead of asking “How did your child show kindness or gratitude today?”, you could ask “Did you do anything nice for someone else today, or did someone do something nice for you?” 
  1. Instead of asking “What activities or hobbies did your child enjoy today?”, you could ask “What have you been doing lately that you really enjoy or find interesting?” 

Remember to make your questions relatable and create a safe space for teenagers to share their thoughts and feelings. 

Children Do Well if They Can: A Behavioral Strategy from Ross Greene

Child Expert Ross Greene wants adults to rethink the way they support children who struggle with their behavior. He offers two reasons children behave in unexpected ways:

  • Lagging skills
  • Unsolved problems

Greene says about 80 percent of problem behaviors at school are due to academic struggles and the rest are related to social inadequacies. To help children make good choices and participate in their education, he says, adults need to collaborate with children to help them learn the skills they need and solve problems that are getting in the way.

PAVE was among state agencies that collaborated to offer an online training for educators and families that Greene provided near the end of 2022. That training, Children Do Well if They Can, is available on-demand. Greene says adults are misguided when they presume children do well only if they want to.

“There is 0 research telling us that kids respond poorly to problems and frustrations because they’re poorly motivated,” Greene says. “That study doesn’t exist. There’s a mountain of research telling us that they’re lacking skills. What skills? Here are the umbrella skills: flexibility, adaptability, frustration tolerance, problem-solving, emotion regulation.”

Families that agree with Ross Greene’s approach can tell the school they want to follow this model in rethinking a student’s supports at school. The lagging skills and unsolved problems can be addressed through a well-built Individualized Education Program (IEP) with a positive behavior support plan, Greene says.

A key point is that “escalation” is downstream. The unsolved problems and lagging skills are addressed “upstream,” before a troubling behavior shows up. For example, an accommodation to support a student “when frustrated” is downstream. If adults instead figure out what problem is causing frustration, they can collaborate with the child to solve that problem and prevent frustration.

If, for example, a child is not learning to read at the same rate as peers, the child might need to be taught reading in an individualized way to have success in reading and regain confidence. That might solve a long-term problem. If the student instead takes a break every time they get frustrated, they might never get better at reading. The problem is pushed down the road.

Greene provides a questionnaire for families and schools to start with—before they discuss what needs to be in the IEP or behavior plan. His form is called the ALSUP—Assessment of Lagging Skills and Unsolved Problems.

The video, Children Do Well if They Can, is about 2 hours and includes comments by Washington State leaders who are proposing an end to isolation/restraint practices in schools. Greene’s presentation lasts about an hour and begins about 15 minutes into the video.

PAVE provides many resources to support families whose children are missing educational opportunities due to behavior. Type the word “behavior” or “discipline” into the search bar to explore other options. Here are places to begin:

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

Full Article

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

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

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

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

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

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

Evaluation is a 3-part process

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

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

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

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

Don’t wait to evaluate because of provider wait lists

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

What areas can be evaluated?

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

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

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

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

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

An infographic of what areas can be evaluated.

Eligibility Categories of Disability

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

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

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

What to do if you disagree

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

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

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

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

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

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

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

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

Help from PAVE

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

Discipline and Disability Rights: What to do if Your Child is Being Sent Home

Learning the skills to maintain expected behavior and follow school rules is part of education. All students learn social, emotional and behavioral skills. Students with disabilities may get extra help in these areas of learning. Some have individualized behavior support plans.

When the pre-teaching and interventions fail to stop a behavior from causing a problem, the school might call a parent to say, “Take them home.” What happens next could depend on how well-informed parents are about the rights of students with disabilities.

This video provides key information about what to do if your child is being sent home. The first thing to ask is, “Are they being suspended?” If the answer is yes, the school is required to file specific paperwork. If the answer is no, a parent has choices and may support better long-term outcomes by carefully documenting what happens next.

Below are links to resources referenced in the video:

Section 504: A Plan for Equity, Access and Accommodations

A Brief Overview

  • Section 504 is part of the Rehabilitation Act of 1973, which is upheld by the U.S. Department of Education’s Office for Civil Rights.
  • Section 504 prohibits discrimination based on disability in any program or activity that receives federal funding. All Washington state public schools must comply with this federal law.
  • Every student with a disability is protected from discrimination under this law, including each student with a 504 Plan and each student with an Individualized Education Program (IEP).
  • Eligibility for Section 504 support at school is determined through evaluation. Washington’s Office of Superintendent of Public Instruction (OSPI) provides fact sheets in multiple languages that describe the evaluation process and state requirements.
  • Civil rights complaint options are described at the end of this article.

Full Article

A student with a disability is protected by multiple federal laws. One of them is the Rehabilitation Act of 1973, which is upheld by the U.S. Department of Education’s Office for Civil Rights. Section 504 is part of the Rehabilitation Act and provides key protections against disability discrimination.

To uphold a student’s civil rights under Section 504, schools provide accommodations and support to ensure that a student with a disability has what they need to access the opportunities provided to all students. That support is the essence of equity. Ensuring equity for students with disabilities is part of a school’s responsibility.

Students are protected in their access to academics, social engagement, extracurriculars, sports, events, and more—everything that is part of the school experience and school-sponsored activities.

Every student with a disability is protected from discrimination under this law, including each student with a 504 Plan and each student with an Individualized Education Program (IEP). Section 504 protects a person with disabilities throughout life and covers individuals in any public facility or program. A person can have a 504 Plan to support them in a vocational program, higher education, or in any location or service that receives federal funds.

All people with recognized disabilities also have protections under the Americans with Disabilities Act (ADA). Within a school, business, or other organization, the person responsible for upholding civil rights under these two laws might hold a title such as Section 504/ADA Compliance Officer.

TIP: If you have concern about civil rights being upheld within any organization, ask to speak with the person responsible for Section 504/ADA compliance. Ask for policies, practices, and complaint options in writing.

What counts as a disability under Section 504?

Section 504 does not specifically name disability conditions and life impacts in order to capture known and unknown conditions that could affect a person’s life in unique ways. In school, determination is made through evaluations that ask these questions:

  1. Does the student have an impairment?
  2. Does the impairment substantially limit one or more major life activities?

Washington’s Office of Superintendent of Public Instruction (OSPI) provides fact sheets in multiple languages that describe the evaluation process and state requirements. Included is this information about what Section 504 means for students:

“Major life activities are activities that are important to most people’s daily lives. Caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, working, eating, sleeping, standing, bending, reading, concentrating, thinking, and communicating are some examples of major life activities.

“Major life activities also include major bodily functions, such as functions of the digestive, bowel, bladder, brain, circulatory, reproductive, neurological, or respiratory systems.

“Substantially limits should also be interpreted broadly. A student’s impairment does not need to prevent, or severely or significantly restrict, a major life activity to be substantially limiting.”

Pyramid of Rights: Students at the top have all these protections! 

Special Education Rights are protected by the Individuals with Disabilities Education Act (IDEA). Eligible students are served with an Individualized Education Program (IEP).

Civil Rights are protected by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA). Students with disabilities impacting a “major life activity” receive accommodations and individualized support as part of their IEP (if eligible) or through a Section 504 Plan.

General Education Rights are protected by Every Student Succeeds Act (ESSA). All children in the United States have the right to access free public education through age 21 or until they earn a high school diploma.

Does the student need a medical diagnosis?

A school cannot require a parent to provide a medical diagnosis to evaluate a student. However, a diagnosis can provide helpful information. The school could request a medical evaluation, at no cost to the parent, if medical information would support decision-making.

Note that a medical diagnosis does not automatically mean a student needs a 504 Plan. Doctors cannot prescribe a 504 plan—only the 504 team can make that decision. However, the 504 team must consider all information provided as part of its evaluation process.

Evaluations must disregard mitigating measures

A mitigating measure is a coping strategy that a person with a disability uses to eliminate or reduce the effects of an impairment. For example, a person who is deaf might read lips. A person with attention challenges might take medication. A person with dyslexia may read using audible books.

Because a person has adapted to their disability does not mean they give up the right to appropriate, individualized support. In its guidance, OSPI states:

“Mitigating measures cannot be considered when evaluating whether or not a student has a substantially limiting impairment.”

A school also cannot determine a student ineligible based on a condition that comes and goes. A student with a fluid illness (for example: bipolar disorder, Tourette’s Syndrome, or a gastrointestinal condition) may be eligible for Section 504 protections even though on some school days they function without any evidence of impairment. OSPI states:

“An impairment that is episodic or in remission remains a disability if, when in an active phase, this impairment substantially limits a major life activity.”

504 or IEP?

Eligibility for school-based services is determined through evaluation. Federal law that protects students in special education process is the Individuals with Disabilities Education Act (IDEA).

IDEA includes Child Find protections that require schools to evaluate a student if there is a reasonable suspicion that disability is impacting educational access. A student is evaluated in all areas of suspected disability to determine eligibility for services. If the student is found eligible, the evaluation provides key information about service needs.

Here’s what might happen after a student is evaluated:

  • A student is eligible for Section 504 protections but not an IEP. Data from the evaluation is used to build a Section 504 Plan for supporting the student with individualized accommodations and other needed supports.
  • A student is eligible for an IEP. The special education program includes goals that track progress toward learning in areas of specially designed instruction (SDI). Accommodations and supports that are protected by Section 504 are built into the IEP.
  • The school determines that the student does not have a disability or that a disability does not substantially limit educational activities. The student will not receive school-based services through an individualized plan or program.

Sometimes parents disagree with the school’s determination. Families have the right to request an Independent Educational Evaluation (IEE) at school district expense if they disagree with the methods, findings, or conclusions from a district evaluation. PAVE provides an article that describes that process and provides a sample letter for requesting an IEE.

Case example from federal court

A 2018 federal court ruling regarding a student with Crohn’s disease highlights one complaint process. Parents provided the school with information about their child’s diagnosis and requested an evaluation for services. Their request was denied. The Third Circuit Court found the school in violation of the student’s right to appropriate evaluation under the Child Find Mandate. The court also found that the school should have provided special education services, not only accommodations with a Section 504 Plan:

“In seeing Crohn’s as something requiring only a Section 504 accommodation, not IDEA special education, [the district] treated the disease as something discrete and isolated rather than the defining condition of [this student’s] life.” 

Crohn’s Disease is one example of a specific medical condition that might require a unique support plan. The Crohn’s and Colitis Foundation provides relevant information about Section 504 rights and suggestions for accommodations.

TIP: If someone you support has a unique medical condition and there is an agency with wisdom about that condition, it’s worth asking whether there are specific recommendations that could be customized for a student’s Section 504 Plan or IEP. For example, the American Diabetes Association provides a sample Section 504 Plan to make sure the school is prepared to support the student’s routine and emergency diabetes care.

FAPE rights under Section 504

The right to a Free Appropriate Public Education (FAPE) is protected by Section 504 and the Individuals with Disabilities education Act (IDEA). PAVE provides a video training with more information about FAPE and Student Rights, IEP, Section 504 and More.

The most common way schools protect Section 504 FAPE rights is through accommodations. A student might have specifically designed help to accomplish their schoolwork, manage their emotions, use school equipment, or something else. The sky is the limit, and Section 504 is intentionally broad to capture a huge range of possible disability conditions that require vastly different types and levels of support.

Here are a two specific topic areas to consider when a student is protected by Section 504:

Section 504 complaint options

Some families are anxious about questioning actions taken by the school. Parents have protections under the law. The Office for Civil Rights maintains specific guidelines that prohibit retaliation against people who assert their rights through a complaint process.

A civil rights complaint can be filed at the local, state, or federal level. Here are resources related to those three options:

  • Local: OSPI maintains a list of school officials responsible for upholding student civil rights. Families can reach out to those personnel to request a complaint form for filing a civil rights complaint within their district.
  • State: OSPI provides a website page with direct links to step-by-step instructions for filing a civil rights complaint with the state Equity and Civil Rights Office, or the Human Rights Commission.
  • Federal: The U.S. Department of Education provides guidance about filing a federal complaint. The U.S. Department of Agriculture is another option for dispute resolution related to civil rights.

What Parents Need to Know when Disability Impacts Behavior and Discipline at School

A Brief Overview

Full Article

Behavior is a form of communication, and children often try to express their needs and wants more through behavior than words. When a young person has a disability or has experienced trauma or other distress, adults and authorities may need to put in extra effort to understand. Missed cues and unmet needs can result in unexpected and sometimes explosive behaviors, which may lead schools to suspend or expel students. Schools are required to address students’ behavioral health needs and limit use of punitive discipline.

Unfortunately, not all students are adequately supported. State data indicate that students with disabilities are disciplined at least 2.5 times more often than non-disabled peers (See WA State Report Card). For students with disabilities who are Black, Indigenous, or People of Color (BIPOC), the numbers are consistently higher within Washington State and nationwide.

By many state and national measures, children’s behavioral health worsened during the pandemic and many children are developmentally behind in social, emotional, and behavioral skills. Governor Jay Inslee on March 14, 2021, issued an emergency proclamation declaring children’s mental health to be in crisis. At the same time, many schools and behavioral health agencies struggle to meet rising demand for services. PAVE provides a toolkit with further information about options for assisting children and young people with behavioral health conditions and ways to advocate for system change in Washington State.

This article provides information about school discipline. Keep in mind that disability rights protect individuals with all disabilities, including behavioral health disabilities. School policies and practices related to discipline may not discriminate against students, regardless of the nature or severity of the disability condition. Federal and state laws require that students with disabilities receive support and individualized instruction to help them meet behavioral expectations (WAC 392-172A-03110).

Federal and state guidance is written for schools and can help families too

This article includes links to various federal and state guidance documents that are written primarily to help school leaders follow laws that protect the rights of students with disabilities. Families and community members can refer to this guidance and work to help ensure that their local schools follow the law. When this does not happen, families and community members can use the dispute resolution process and incorporate federal and state guidance to support their advocacy efforts.

Dispute Resolution options related to IEP process are described in Procedural Safeguards. Dispute Resolution options when there are civil rights issues are described in the Section 504 Notice of Parent Rights. Both links connect to places where these documents are downloadable in various languages.

Key guidance and legal protections

Here are key state and national resources related to school discipline:

Washington State’s Office of Superintendent of Public Instruction (OSPI) provides information about Discipline Procedures for Students Eligible to Receive Special Education Services.

The Office of Special Education Programs (OSEP) within the US Department of Education issued a guidance letter July 19, 2022, that describes federal work underway to improve behavioral supports and reduce use of disciplinary removal nationwide. OSEP’s Dear Colleague Letter includes links to a Q and A document about disciplinary requirements and A Guide for Stakeholders, describing best practices to support behavior.

Also in July 2022, the US Department of Education’s Office for Civil Rights (OCR) issued guidance about the rights of students with behavioral health needs. Available in multiple languages, the downloadable booklet is titled: Supporting Students with Disabilities and Avoiding the Discriminatory Use of Student Discipline under Section 504 of the Rehabilitation Act of 1973.

In a Dear Colleague letter published with OCR’s guidance on July 19, 2022, Catherine E. Lhamon, Assistant Secretary for Civil Rights, calls out problems related to disability discrimination. “An important part of [OCR’s] mission is to ensure that students are not denied equal educational opportunity or subjected to discrimination based on their disabilities, including through the improper use of discipline,” Sec. Lhamon wrote.

Behavior support is part of FAPE

The right to appropriate behavioral supports is part of a student’s right to a Free Appropriate Public Education (FAPE), which requires services and supports designed to meet identified needs so students with disabilities can access what non-disabled students access without individualized services.

OCR’s guidance includes information about what schools must provide to serve FAPE, including the responsibility to offer regular and/or special education, and related aids and services, that “are designed to meet the student’s individual educational needs as adequately as the needs of students without disabilities are met.”

Qualified personnel are required for FAPE: “Schools must take steps to ensure that any staff responsible for providing a student with the services necessary to receive FAPE understand the student’s needs and have the training and skills required to implement the services. A school’s failure to provide the requisite services is likely to result in a denial of FAPE.”

FAPE violations under Section 504 relate to fundamental disability rights. Denial of those rights is considered disability discrimination, which OCR defines as “excluding, denying benefits to, or otherwise discriminating against a student based on their disability, including by denying them equal educational opportunity in the most integrated setting appropriate to their needs.”

Federal framework for student rights

Families can empower themselves to understand these rights and resources and advocate for their students by learning the federal framework for school-based services:

  • Students who receive accommodations and supports through a Section 504 Plan have anti-discrimination protections from the Rehabilitation Act of 1973.
  • Students with an Individualized Education Program (IEP) have Section 504 protections and specific rights and protections from the Individuals with Disabilities Education Act (IDEA).
  • Section 504 protects all students with disabilities within the public school system, including those with Section 504 Plans, those with IEPs, and those with known or suspected disability conditions that make schools responsible to evaluate them. The right to a non-discriminatory evaluation is protected by Section 504 and by IDEA’s Child Find Mandate.
  • Section 504 applies to elementary and secondary public schools (including public charter schools and state-operated schools), public school districts, State Educational Agencies (OSPI is the SEA for WA State), and private schools and juvenile justice residential facilities that receive federal money directly or indirectly from the Department of Education. Private schools that do not receive federal funding are not bound by IDEA.
  • Title VI of the Civil Rights Act of 1964 prohibits discrimination based on race, color, or national origin. According to its July 2022 guidance, OCR can investigate complex complaints: “OCR is responsible for enforcing several laws that prohibit schools from discriminating based on disability; race, color, or national origin; sex; and age. A student may experience multiple forms of discrimination at once. In addition, a student may experience discrimination due to the combination of protected characteristics, a form of discrimination often called intersectional discrimination. Some instances of intersectional discrimination may stem from a decisionmaker acting upon stereotypes that are specific to a subgroup of individuals, such as stereotypes specific to Black girls that may not necessarily apply to all Black students or all girls. When OCR receives a complaint alleging discrimination in the use of discipline under more than one law, OCR has the authority to investigate and, where appropriate, find a violation under any law in its jurisdiction.” [emphasis added]
  • Contact the Office for Civil Rights (OCR) at OCR@ed.gov or by calling 800-421-3481 (TDD: 800-877- 8339).

What is exclusionary discipline?

Any school disciplinary action that takes a student away from their regularly scheduled placement at school is called exclusionary discipline. Out-of-school suspensions, expulsions, and in-school suspensions count. Shortened school days and informal removals—like when the school calls parents to have a child taken home for their behavior—are forms of exclusionary discipline unless there is a school-and-family meeting in which an alternate placement or schedule is chosen to best meet the needs of the student. 

If such a meeting does take place, the school and family team are responsible to make decisions about program and placement that are individualized. Schools may not unilaterally decide, for example, that all students with certain behavioral characteristics should attend a specific school or program. According to OCR, “A school district would violate Section 504 if it had a one-size-fits-all policy that required students with a particular disability to attend a separate class, program, or school regardless of educational needs.”

Seclusion and restraint may not be used as punishment

Seclusion (also called isolation) and/or restraint are emergency responses when there is severe and imminent danger. Federal guidance emphasizes that these practices may never be used as punishment or discipline:

“OSEP is not aware of any evidence-based support for the view that the use of restraint or seclusion is an effective strategy in modifying a child’s behaviors that are related to their disability. The Department’s longstanding position is that every effort should be made to prevent the need for the use of restraint or seclusion and that behavioral interventions must be consistent with the child’s rights to be treated with dignity and to be free from abuse.”

More information about isolation and restraint is included later in this article.

Exclusionary discipline may violate FAPE, including for students not yet receiving services

A student with an identified disability may be suspended for a behavioral violation that is outlined in district policy. The student “code of conduct” usually explains what it takes to get into trouble.

Schools are limited in their ability to exclude students from school because of behaviors that “manifest” (arise or express) from disability. Federal and state guidance is for schools to suspend students only if there are significant safety concerns.

If a student with disabilities has unmet needs and is consistently sent home instead of helped, the school may be held accountable for not serving the needs. According to OCR, disability discrimination can include instances when there is reasonable suspicion that a disability condition is impacting behavior, but the student is not properly evaluated to see if they are eligible for services and what services they may need.

The right to evaluation is protected by Child Find, which is an aspect of the IDEA, as well as Section 504 of the Rehabilitation Act of 1973. OCR guidance includes information that schools may need to train or hire experts to meet federal requirements: “To ensure effective implementation of its evaluation procedures, a school may need to provide training to school personnel on when a student’s behaviors, or other factors, indicate the need for an evaluation under Section 504.”

A student with a disability that impacts their learning is entitled to FAPE. Again, FAPE stands for Free Appropriate Public Education. FAPE is protected by Section 504 and by IDEA. FAPE is what a student with disabilities is entitled to receive and what schools are responsible to provide.

OCR provides these places to look for data demonstrating a need to evaluate and determine whether a student is entitled to the rights and protections of FAPE:  

  • Information or records shared during enrollment
  • Student behaviors that may harm the student or another person
  • Observations and data collected by school personnel
  • Information voluntarily provided by the student’s parents or guardians
  • The school’s own disciplinary or other actions indicating that school personnel have concerns about the student’s behavior, such as frequent office referrals, demerits, notes to parents or guardians, or use of restraints or seclusion
  • Information that a previous response to student behavior by school personnel resulted in repeated or extended removals from educational instruction or services, or that a previous response (such as a teacher’s use of restraints or seclusion) traumatized a student and resulted in academic or behavioral difficulties

Schools are required to take assertive action to evaluate a student and/or reconsider the services plan if the student is consistently missing school because of their behavior. OCR guidance clearly states that schools cannot use resource shortages as a reason to deny or delay an evaluation:

“OCR would likely find it unreasonable for a district to delay a student’s evaluation because it does not have sufficient personnel trained to perform the needed assessments and fails to secure private evaluators to meet the need. In addition, the fact that a student is doing well academically does not justify the school denying or delaying an evaluation when the district has reason to believe the student has a disability, including if the student has disability-based behavior resulting in removal from class or other discipline (e.g., afterschool detentions).”

Parents can request an evaluation any time

OCR’s guidance states that parents can request an evaluation at public expense any time. “Section 504 does not limit the number of evaluations a student may reasonably request or receive. The student’s parent or guardian is entitled to notice of the school’s decision and may challenge a denial of their request under Section 504’s procedural safeguards.”

Despite a parent’s right to request an evaluation, the school is responsible to evaluate a child if there is reason to believe a disability is disrupting education: “While parents or guardians may request an evaluation, and schools must respond to any such requests, the responsibility to timely identify students who may need an evaluation remains with the school.”

Procedural Safeguards include detail about the evaluation process and the right to an Independent Educational Evaluation (IEE) if the district’s evaluation is incomplete or if parents disagree with its conclusions or recommendations.

Manifestation Determination

Schools are required to document missed educational time and meet with family to review the student’s circumstances. These requirements are related to the provision of FAPE (Free Appropriate Public Education) for students with disabilities. If the time a student with disabilities is removed from their academic placement for discipline adds up to 10 days, the school is required to host a specific meeting called a Manifestation Determination.

OCR guidance states that discussion about what happened and what to do next must be made by a team of people knowledgeable about the student’s needs and disability: “If a single person, such as a principal who is in charge of the school’s general disciplinary process for all students, alone determined whether a student’s behavior was based on the student’s disability, such a unilateral decision would not comply with Section 504.”

The Manifestation Determination requirement includes informal or “off book” removals from school. For example, if the school calls and directs parents to take a child home because of behavior, that missed educational time counts toward the 10 days. Parents can request paperwork to document the missed time to ensure compliance with this requirement. OCR guidance includes this statement:

“OCR is aware that some schools informally exclude students, or impose unreasonable conditions or limitations on a student’s continued school participation, as a result of a student’s disability-based behaviors in many ways, such as:

  • Requiring a parent or guardian not to send their child to, or to pick up their child early from, school or a school-sponsored activity, such as a field trip;
  • Placing a student on a shortened school-day schedule without first convening the Section 504 team to determine whether such a schedule is necessary to meet the student’s disability-specific needs;
  • Requiring a student to participate in a virtual learning program when other students are receiving in-person instruction;
  • Excluding a student from accessing a virtual learning platform that all other students are using for their instruction;
  • Informing a parent or guardian that the school will formally suspend or expel the student, or refer the student to law enforcement, if the parent or guardian does not: pick up the student from school; agree to transfer the student to another school, which may be an alternative school or part of a residential treatment program; agree to a shortened school day schedule; or agree to the use of restraint or seclusion; and
  • Informing a parent or guardian that the student may not attend school for a specific period of time or indefinitely due to their disability-based behavior unless the parent or guardian is present in the classroom or otherwise helps manage the behavior (e.g., through administering medication to the child).

“Depending on the facts and circumstances, OCR could find that one or more of these practices violate Section 504.”

Under Section 504, schools are bound to consider disability-related factors through Manifestation Determination if the disciplinary removal is for more than 10 consecutive school days or when the child is sub­jected to a series of removals that constitute a pattern. For state-specific information, OSPI provides a guidance form for Section 504 circumstances.

For a student with an IEP, removal from regularly scheduled classes for more than 10 days per school year may constitute a “change of placement” if there is a pattern to the removals and the behaviors are similar in nature (WAC 392-172A-05155). In those situations, a Manifestation Determination meeting is held to determine whether the disciplinary removals resulted from the school’s failure to implement the IEP. OSPI provides a guidance form for IEP circumstances.

Note that Manifestation Determination is a distinct process for students with known or suspected disabilities and is separate from general education disciplinary hearings or procedures. Under federal requirements (IDEA Sec. 300.530 (e)), the behavior must be determined to manifest from disability if the IEP Team determine that the behavior was:

  1. Caused by, or had a direct and substantial relationship to, the student’s disability
  2. The direct result of the school’s failure to implement the IEP, including situations where the child did not consistently receive all services required by their IEP

A behavior support plan is best practice

During a Manifestation Determination meeting, a student’s circumstances and services are reviewed. An IEP can be amended to provide additional support and a Functional Behavioral Assessment is planned to gather information for a Behavior Intervention Plan (BIP). If the student has a BIP that isn’t working, the plan can be changed. See PAVE’s video: Behavior and School: How to Participate in the FBA/BIP Process.

For students without IEP services, a Manifestation Determination meeting can initiate or expedite an educational evaluation in addition to an FBA. If the school district knew or should have known that the student needed special education services and did not initiate an evaluation, Child Find violations may apply.

Family members are included in this process. According to WAC 392-172A-05146, “If the school district, the parent, and relevant members of the student’s IEP team determine the conduct was a manifestation of the student’s disability, the school district must take immediate steps to remedy those deficiencies.”

If the conduct is determined to be unrelated to disability, then school personnel may use general education discipline procedures. The school must still provide any special education services that the student has already been found to need. The IEP team decides the appropriate alternative setting and special education services to meet the student’s needs while suspended.

A shortened school day may be a suspension

If the school reduces a student’s schedule because of difficult-to-manage behaviors, the change could be considered a suspension and the missed educational time could count toward a Manifestation Determination process. OSPI provides this information in a Technical Assistance Paper (TAP #2):

“A decision to shorten a student’s school day in response to a behavioral violation would constitute a suspension under general state discipline regulations (WAC 392-400-025).

“District authorities should not use a shortened school day as an automatic response to students with challenging behaviors at school or use a shortened day as a form of punishment or as a substitute for a BIP [Behavior Intervention Plan]. An IEP team should consider developing an IEP that includes a BIP describing the use of positive behavioral interventions, supports, and strategies reasonably calculated to address the student’s behavioral needs and enable the student to participate in the full school day.”

OSEP’s federal guidance explains that a shortened school day is a disciplinary removal unless the IEP team has explored all options to serve the student with a full day and agreed that a shortened day is the only adequate option so the student can benefit from their Free Appropriate Public Education (FAPE):

“[The] practice of shortening a child’s school day as a disciplinary measure could be considered a denial of FAPE if the child’s IEP Team does not also consider other options such as additional or different services and supports that could enable a child to remain in school for the full school day.”

OCR’s guidance points out that a shortened school day is an example of a significant change of placement, and that placement changes require a re-evaluation process: “Section 504 requires reevaluations on a periodic basis, in addition to a subsequent evaluation before any significant change in placement.”

A school’s decision to keep a student out of school is separate from a student or family decision for the student to stay home to care for their mental health. In 2022, the Washington Legislature passed HB 1834, which establishes a student absence from school for mental health reasons as an excused absence.

Alternative learning options for longer suspensions

If a student’s behavioral violation includes weapons or illegal substances, or causes severe injury, the school can remove the student from their placement for longer than 10 days, regardless of their disability. Those situations are referred to as “Special Circumstances.”

Some Section 504 protections do not apply when a school disciplines a student with a disability because of current drug or alcohol use. According to OCR, “Schools may discipline a student with a disability who is currently engaging in the illegal use of drugs or the use of alcohol to the same extent that the school disciplines students without disabilities for this conduct.”

OCR goes on to say that Section 504 protections apply to students who:

  1. Successfully complete a supervised drug rehabilitation program or are otherwise rehabilitated successfully and no longer engaging in the illegal use of drugs
  2. Are participating in a supervised rehabilitation program and are no longer using
  3. Were erroneously [incorrectly] regarded as engaging in substance use

Under Special Circumstances, a student might shift into an Interim Alternative Educational Setting (IAES) for up to 45 school days, regardless of whether the violation was caused by disability related behaviors. The following information from federal law uses a couple of acronyms not previously defined in this article:

  • SEA is a State Educational Agency (OSPI is the SEA for Washington State)
  • LEA is a Lead Educational Agency, which in our state refers to a school district

Under federal law (34 C.F.R. § 300.530(g)):

School personnel may consider removing a child with a disability from their current placement and placing them in an IAES for not more than 45 school days without regard to whether the behavior is determined to be a manifestation of the child’s disability if the child:

  1. Carries a weapon to or possesses a weapon at school, on school premises, or to or at a school function under the jurisdiction of an SEA or an LEA
  2. Knowingly possesses or uses illegal drugs or sells or solicits the sale of a controlled substance, while at school, on school premises, or at a school function under the jurisdiction of an SEA or an LEA
  3. Has inflicted serious bodily injury upon another person while at school, on school premises, or at a school function under the jurisdiction of an SEA or an LEA

The temporary setting (IAES) is chosen by the IEP team and must support the student’s ongoing participation in the general education curriculum as well as progress toward IEP goals. As appropriate, the student’s behavior is assessed through the Functional Behavioral Assessment (FBA—see below) while they are learning in the alternate setting, so a behavior plan is in place to prevent future problems when the student returns to their regular schedule and classes.

If the school pursues a threat/risk assessment, they are required to safeguard a student’s right to be treated in non-discriminatory ways. According to OCR, “Schools can do so by ensuring that school personnel who are involved in screening for and conducting threat or risk assessments for a student with a disability are aware that the student has a disability and are sufficiently knowledgeable about the school’s FAPE responsibilities so that they can coordinate with the student’s Section 504 [or IEP] team….

“For example, the Section 504 [or IEP] team can provide valuable information about: the nature of the student’s disability-based behaviors and common triggers; whether the student has been receiving behavioral supports, and, if so, the effectiveness of those supports; and specific supports and services that may be able to mitigate or eliminate the risk of harm without requiring exclusion from school.”

Schools are required to support behavior and work with families

Schools are required to provide education and support before resorting to discipline for children who struggle with behavior because of their impairments. According to OCR, “Individualized behavioral supports may include, among other examples: regular group or individual counseling sessions, school social worker services, school-based mental health services, physical activity, and opportunities for the student to leave class on a scheduled or unscheduled basis to visit a counselor or behavioral coach when they need time and space to ‘cool down’ or self-regulate.”

Regardless of whether the student has previously qualified for services, best practice is for the school to conduct a Functional Behavioral Assessment (FBA) following a significant disciplinary action. The FBA is used to develop a Behavior Intervention Plan (BIP), which helps a child learn expected behaviors and prevent escalations. The BIP identifies target behaviors that disrupt learning and calls out “antecedents,” conditions or events that occur first—before the targeted behavior. A BIP supports “replacement” behavior so a student can develop skills for expected learning behaviors.  

Schools are guided by the state to use best practices when evaluating and serving students with special needs. OSPI’s website is k12.wa.us. A page called Model Forms for Services to Students in Special Education has links to downloadable forms schools use to develop IEPs, Section 504 Plans, and more.

Here are links to OSPI’s model forms for:

When a student’s behaviors aren’t working, there’s an opportunity for learning

In addition to a BIP, a student receiving special education services whose behavior impedes their learning may need Specially Designed Instruction (SDI) to support skill-development in an area of education called Social Emotional Learning (SEL). If targeted SEL instruction is needed, the student will have specific IEP goals to support the learning.

Another way that an IEP can support students with behavioral disabilities is through related services. Counseling and other behavioral health supports can be written into an IEP as related services. When included in a student’s IEP as educationally necessary for FAPE, a school district is responsible to provide and fund those services. If they participate in the state’s School-Based Health Services (SBHS) program, 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.

All students access behavioral supports when schools use Multi-Tiered Systems of Support (MTSS). Families can ask school staff to describe their MTSS structure and how students receive support through Tier 1 (all students), Tier 2 (targeted groups), and Tier 3 (individualized support). An element of MTSS is Positive Behavioral Interventions and Supports (PBIS), which also supports students across levels of need.

Keep in mind that participation in MTSS does not replace a school’s responsibility to evaluate a student with a known or suspected disability that is impacting their access to education.

PAVE provides resources to support families and schools:

Washington is a local control state

As a local control state, individual school districts determine their specific policies related to disciplinary criteria and actions. According to OSPI, school districts are required to engage with community members and families when updating their discipline policies, which must align with state and federal regulations.

When a student is suspended, the school is required to submit a report to the family and the state. That report must include an explanation of how school staff attempted to de-escalate a situation before resorting to disciplinary removal. OSPI provides information for schools and families related to state guidance and requirements. A one-page introductory handout for parents is a place to begin.

In general, Washington rules:

  • Encourage schools to minimize the use of suspensions and expulsions and focus instead on evidence-based, best-practice educational strategies
  • Prohibit schools from excluding students due to absences or tardiness
  • Require schools to excuse absences related to mental health (HB 1834)
  • Limit use of exclusionary discipline for behaviors that do not present a safety threat
  • Prohibit expulsion for students in kindergarten through grade four (children in that age range cannot be excluded from their classroom placements/suspended for more than 10 cumulative days per academic term)
  • Require schools to provide educational access while a student is suspended or expelled

Schools must provide educational services during a suspension

State law requires that all suspended and expelled students have an opportunity to receive educational services (RCW 28A.600.015). According to the Washington Administrative Codes (WAC 392-400-610) educational services provided in an alternative setting must enable the student to:

  • Continue to participate in the general education curriculum
  • Meet the educational standards established within the district
  • Complete subject, grade-level, and graduation requirements

Guidance related to isolation and restraint

The state has specific rules related to the use of isolation (sometimes called seclusion) and restraint, which are implemented only when a student’s behavior poses an imminent likelihood of serious bodily harm and are discontinued when the likelihood of serious harm has passed. Isolation and restraint are not used as a form of standard discipline or aversive intervention.

In simpler words, isolation and restraint are an emergency action for safety and cannot be used to punish a student. The isolation or restraint ends the moment the safety threat has passed, not after everything is all better.

The Washington State Governor’s Office of the Education Ombuds (OEO) offers an online resource page that details state guidance related to isolation and restraint. Included is this statement:

“Schools in Washington State are not allowed to use restraint or isolation as a form of discipline or punishment, or as a way to try to correct a child’s behavior. Restraint and isolation are only allowed as emergency measures, to be used if necessary, to keep a student or others safe from serious harm. They can continue only as long as the emergency continues.”

School districts are required to collect and report data on the use of restraint and isolation. That data is posted on OSPI’s website as part of the School Safety Resource Library. 

Emergency Response Protocol (ERP)

If emergency responses and/or severe disciplinary actions become frequent, schools might ask the parent/guardian to sign an Emergency Response Protocol (ERP) for an individual student. Families are not required to sign this.

The ERP explains what the school’s policies are related to isolation and restraint and what the training requirements are for staff authorized to conduct isolation and restraint. Parents can request a copy of the district’s general education policies on this topic. The ERP can include a statement about how parents are contacted if the school uses isolation or restraint.

Reporting requirements for disciplinary removal

Schools are required to provide a report to the parent/guardian and to the state any time disciplinary or emergency actions are taken.

The Washington Administrative Code (WAC 392-400-455) describes what is required in a notice to students and parents when a student is suspended or expelled from school:

  • Initial notice. Before administering any suspension or expulsion, a school district must attempt to notify the student’s parents, as soon as reasonably possible, regarding the behavioral violation.
  • Written notice. No later than one school business day following the initial hearing with the student in WAC 392-400-450, a school district must provide written notice of the suspension or expulsion to the student and parents in person, by mail, or by email. The written notice must include:
    • A description of the student’s behavior and how the behavior violated the school district’s policy adopted under WAC 392-400-110;
    • The duration and conditions of the suspension or expulsion, including the dates on which the suspension or expulsion will begin and end;
    • The other forms of discipline that the school district considered or attempted, and an explanation of the district’s decision to administer the suspension or expulsion;
    • The opportunity to receive educational services during the suspension or expulsion under WAC 392-400-610;
    • The student’s and parents’ right to an informal conference with the principal or designee under WAC 392-400-460;
    • The student’s and parents’ right to appeal the suspension or expulsion under WAC 392-400-465, including where and to whom the appeal must be requested;
    • For a long-term suspension or expulsion, the opportunity for the student and parents to participate in a reengagement meeting under WAC 392-400-710
  • Language assistance. The school district must ensure the initial and written notices required under this section are provided in a language the student and parents understand, which may require language assistance for students and parents with limited-English proficiency under Title VI of the Civil Rights Act of 1964.

Reporting requirements for isolation/restraint

The state has similar reporting requirements when a student is isolated or restrained at school. Following are statements from the Revised Code of Washington (RCW 28A.600.485):

“Any school employee, resource officer, or school security officer who uses isolation or restraint on a student during school-sponsored instruction or activities must inform the building administrator or building administrator’s designee as soon as possible, and within two business days submit a written report of the incident to the district office. The written report must include, at a minimum, the following information:

  • The date and time of the incident
  • The name and job title of the individual who administered the restraint or isolation
  • A description of the activity that led to the restraint or isolation
  • The type of restraint or isolation used on the student, including the duration
  • Whether the student or staff was physically injured during the restraint or isolation incident and any medical care provided
  • Any recommendations for changing the nature or amount of resources available to the student and staff members in order to avoid similar incidents”

The RCW also states that school staff “must make a reasonable effort to verbally inform the student’s parent or guardian within 24 hours of the incident and must send written notification as soon as practical but postmarked no later than five business days after the restraint or isolation occurred. If the school or school district customarily provides the parent or guardian with school-related information in a language other than English, the written report under this section must be provided to the parent or guardian in that language.”

Equity work in student discipline is ongoing

A graph that shows disparity in discipline is provided on OSPI’s website, which includes training and materials for schools to support improvements. “Like other states, Washington has experienced significant and persistent disparities in the discipline of students based upon race/ethnicity, disability status, language, sex and other factors,” OSPI’s website states.

“While overall rates of exclusionary discipline (suspension and expulsion) have declined over the last decade, significant disparities persist. These trends warrant serious attention from school districts, as well as OSPI, to work toward equitable opportunities and outcomes for each and every student.”

Tips to Help Parents Plan for the Upcoming School Year

A Brief Overview

  • By getting organized, you can plan ahead for fall and beyond. This article includes tips, resources, and information to help you get ready for a new school year. 
  • Keep in mind that schools are required to engage with families. PAVE provides an article about parent participation in special education process.
  • If you are tight on time and new to special education, here’s a place to do some basic training, with three short videos: Student Rights, IEP, Section 504 and More.
  • If you feel lost in the dark about how any of this works, here’s an article designed for military transplants and helpful to anyone who needs an overview of disability service systems: Help for Military Families: Tips to Navigate Special Education Process in Washington State.

Full Article

Summer provides an opportunity to reset for the school year ahead. If your child has a disability, you may want to think about what went well or what could have gone better last year. By getting organized, you can plan ahead for fall and beyond. This article includes resources and information to help you get ready for a new school year. 

Locate and organize documents

Now is a good time to re-read important documents, such as your student’s Individualized Education Program (IEP), Section 504 Plan, or Behavior Intervention Plan (BIP). Organize a place to store the most current copies. Whether you choose an electronic file or a physical folder, label everything with the school year and renewal dates so you can easily notice when something is due for an update.

Use a highlighter or choose another way to make notes as you read through these documents. PAVE provides an article to help: Steps to Read, Understand, and Develop an Initial IEP.

Do you have concerns about anything that’s included or missing from your student’s program or plan? Write down your concerns and plan to use these notes to organize your top priorities. When you have an organized list of your top concerns, save this list to share with the school so these points will be included in your next meeting’s agenda.

Keep in mind that you can request a meeting anytime you have concerns. During summer you may be able to meet with district staff even if school staff are unavailable. The state’s Office of Superintendent of Public Instruction (OSPI) provides a resource directory with special educational staff at the state, regional, and district levels.

Many parents want to meet with teachers and other school staff a few weeks into a new school year to see how things are going and make sure services are on track to support good outcomes. Plan to schedule your meeting as soon as school staff are back in the building for the best chance to get a day/time that works well for you and the rest of the team.

Keep in mind that the school is required to support your participation in your student’s special education services program development and implementation. PAVE provides an article about the parent participation requirements of special education process.

Here are questions to consider as you review your child’s IEP, 504 Plan, or BIP

  1. Do the Present Levels of Performance describe your child in ways that are current and accurate? If no, you may want to request a new evaluation. PAVE provides a Sample Letter and information to help families seeking an evaluation.
  2. If your child has a 504 Plan but has never been formally evaluated, consider requesting a formal special education evaluation to make well-informed decisions about service needs. OSPI provides family-friendly guidance, downloadable in multiple languages, about Section 504 protections, plan development, and civil rights complaint options.
  3. Do IEP goals sound SMART (Specific, Measurable, Achievable, Relevant, and Time appropriate), given the annual renewal date listed on the IEP’s cover page? PAVE provides an article to help families participate in goal-setting and progress monitoring.
  4. Does the Adverse Impact Statement list all the major ways that the student’s disability affects how they do in school? If not, does that important statement need to be rewritten? Is there enough evaluation data to write an accurate statement? If not, additional evaluations may be needed.
  5. Make sure the highlighted needs and the services match! Each area of need highlighted in the Adverse Impact Statement must be addressed through the services and accommodations being provided by the school.
  6. Is the program clearly written to show what skills the student is working on to support progress? For example, if a reading disability makes it hard for the student to keep up with their grade-level reading, does the program clearly describe the services and goal-setting/progress monitoring to make sure the student is getting better at reading?  
  7. Will each accommodation or modification work in real time to make sure the student has the support they need to access the classroom and curriculum? Keep in mind that accommodations and modifications are intended to meet the needs of each specific student in an individualized way. Cut-and-paste, generic accommodations are not best practice. See OSPI’s Model Forms for Section 504 Plan or for IEP. If the accommodations need work, make notes and plan to request a meeting.
  8. If there is a Behavior Intervention Plan (BIP), take a careful look at the target behaviors and replacement behaviors to decide whether you agree that the plan is built to support the student’s learning and skill-building. PAVE provides a video to help: Behavior and School: How to Participate in the FBA/BIP Process.
  9. Consider how behavior is going this summer and any insights you may wish to share. PAVE provides an article with Tips to Help Parents Reinforce Positive Behaviors at Home.

Mark your calendar with important dates

While you are checking deadlines, get out your calendar to mark any important dates. For example, the cover page of an IEP includes an annual renewal date. The IEP team, including you, needs to meet before that date to review the IEP and make any necessary changes. Make a note on the date and also about a month before that date to make sure you and the team plan your meeting with plenty of advance notice to meet everyone’s scheduling needs.

If something happens and you cannot attend before the deadline, keep in mind that your participation is a higher priority than the deadline. Your student’s IEP will not “lapse” or “expire” because of a meeting delay. That deadline is there to hold the school accountable, not to punish families if they need to delay a meeting.

If you want to request an additional meeting, mark your calendar to reach out to the district and school as soon as teachers are back at work to get your meeting on everyone’s calendar.

The cover page of an IEP lists the date of the most recent evaluation. A new evaluation is required every three years to guarantee ongoing eligibility and to ensure that services meet current needs. Note those dates on your calendar.

You can request a new evaluation anytime you have concerns about an unmet need that isn’t fully documented or understood. You also have the right to request an Independent Educational Evaluation (IEE) from a provider outside the school district if you don’t agree with the school’s evaluation.

PAVE provides more information and a sample letter for requesting an IEE. As you review your student’s documents, consider whether requesting an evaluation is part of what you want to do. Evaluation requests must always be in writing, and schools are responsible to provide forms to support written requests.

Review the school’s calendar and make a note of parent conferences and other important dates. If your student will be a graduating senior, plan ahead for senior year activities and make sure to allow plenty of time to request any accommodations. You might mark your calendar in early January, for example, to call the school and ask about Commencement, the Senior Party, etc., and talk through what will need to happen for those events to be accessible to your student. More information to support families of transition-age youth is available from PAVE: School to Adulthood: Transition Planning Toolkit for High School, Life, and Work.

Be sure to use a calendar that you check regularly to keep track of this important information!

Consider whether behaviors need to be addressed

A Behavior Intervention Plan (BIP) often needs to be rewritten in a new school year because of changes in staffing and environment. Consider whether you want to request a fresh Functional Behavioral Assessment (FBA) early in the new school year to ensure your child gets a fresh start on the year with supports designed to match current needs.

See PAVE’s training video: Behavior and School: How to Participate in the FBA/BIP Process. Mark your calendar to send an FBA request letter right away if that is something you want to happen when schools reopen in the fall. 

If your child has experienced discipline and/or isolation and restraint in previous school years, summer is a good time to review state and district policies related to discipline. PAVE provides an article: What Parents Need to Know when Disability Impacts Behavior and Discipline at School.

Ask for a copy of the district’s student handbook so you clearly understand what the codes of conduct are for expected student behavior and what might be grounds for a suspension or expulsion. Plan to review the rules with your child in a developmentally appropriate way, and do your best to check for understanding. If there are rules you don’t think your child will be able to understand or follow, plan to discuss those challenges with school staff.

Keep in mind that if your student is sent home from school because of behavior, they are being suspended. The school is required to file paperwork with the state and share that paperwork with you. PAVE provides an on demand training: Behavior and Discipline in Special Education: What to do if the School Calls Because of a Behavior Incident.

Make notes about summer regression to talk about ESY for next year

If you notice that your child’s emerging skills are lagging during the break from school, write down details about what you observe. When school resumes, pay attention to how quickly or if those skills return. This data is important as part of a discussion with the school about Extended School Year (ESY), which is a special education service provided outside of regular school hours for eligible students. See PAVE’s article for more information: ESY Helps Students Who Struggle to Maintain Skills and Access FAPE.

Consider how your child with disabilities is included with non-disabled peers

Special education laws require education in the Least Restrictive Environment (LRE) to the maximum extent appropriate to meet the needs of each student. LRE requires that students with disabilities get the supplementary aids and supports they need so their inclusion is equitable. Keep in mind that equity doesn’t mean equal: It means people get the support they need to have the same opportunities.

Washington State leaders are well aware that our state is underperforming in its ability to include students with disabilities in general education. To support more inclusive schools in Washington, the State Legislature provided OSPI with $25 million for the 2019-21 biennium and $12 million for the 2021-23 biennium to provide educators with professional development opportunities in support of inclusionary practices across the state. Families can learn more about the Inclusionary Practices Professional Development Project on OSPI’s website.

Parents can support their child’s inclusion by considering how services might be delivered in the general education setting. Bringing specific ideas into an IEP meeting might generate discussion for significant shifts toward more meaningful and consistent inclusion. Here are some resources you can review to prepare for those discussions with the school:

Write an informal letter to your student’s teachers

Before the new school year gets going, consider what you most want your child’s teachers to understand or remember.

  • Is there something you say at home to help your child stay calm or refocus?
  • Is there a behavioral intervention that’s working well this summer?
  • Is there something unique about your child that isn’t obvious until you get to know them better?
  • What do you most want to share to help teachers understand and support your child?
  • Are there really important points in the IEP, 504 Plan, or Behavior Intervention Plan that you want to call out?

All of these points can be included in a short letter or email you share with teachers at the start of the school year. If you’re not comfortable writing, consider making a short video to share.

Enjoy time with your children

Summer can fly by, especially in the Northwest. Getting ready for fall is important, but so is enjoying the sunshine, swimming pools, hiking trails, camping, games, or whatever makes summer special for your family. Relish time to do something that everyone enjoys and notice how you feel. If something feels challenging next year, you can tap back into the feelings you found during a special summer moment to remember what can go well. Teachers want to know those highlights too!

PAVE provides an article, with links to self-care videos: Self-Care is Critical for Caregivers with Unique Challenges.

PAVE works all year and is happy to help. If you click Get Help and fill out a request for individualized assistance, we will contact you by phone and/or email and schedule time to discuss your specific questions.

More homework for extra credit!

PAVE provides a variety of on demand training videos and articles to support parents in better understanding special education rights, process, and family involvement. Here is some additional summer homework to support your learning:

Tips to Help Parents Reinforce Positive Behaviors at Home

A Brief Overview

  • Positive Behavioral Interventions and Supports (PBIS) is a strategy schools use to teach children expected behavior. Read on for PBIS strategies families can use at home.
  • A key PBIS principle is that punishment fails to teach what to do instead. Adults can direct children and youth toward better choices and interrupt escalation cycles by consistently teaching expected, skillful behaviors.
  • The easiest way to change a behavior is to point out what a person does right. Remember this catchy phrase, “5-and-1 gets it done,” to ensure five positive interactions for each negative interaction.
  • PAVE provides a video with key information to help families and schools analyze a child’s behavior and develop a positive behavior support plan: Behavior and School: How to Participate in the FBA/BIP Process.
  • If you come up with some great behavior support strategies this summer, be sure to share them with the school in the fall!

Full Article

Changes in routine and seasonal transitions can cause emotional upheaval for families. A few strategies, described below, might help families keep things chill this summer and beyond.

These ideas come from education, where research has helped teachers see the benefits from using Positive Behavioral Interventions and Supports (PBIS). PBIS has been implemented in more than 26,000 U.S. schools. The PBIS framework has been shown to decrease disciplinary removals and improve student outcomes, including grades and graduation rates. When done well, PBIS provides positive social skills, communication strategies and “restorative justice,” (working it out instead of punishing) and may prevent 80-90 percent of problem behaviors.

Punishment does not teach

PBIS research highlights problems with punishments, which are called “aversive interventions.” Research shows that a punished child is likely to flip into an emotionally dysregulated state (fight/flight/freeze) that actually blocks learning. Chances are low that the child will know what to do next time because the punishment didn’t provide a learning opportunity.

PBIS teaches what to do instead—and how to do it. Adults who calmly direct a child toward a new way of problem-solving can interrupt or prevent an escalation and help the child make better and better choices moving forward.

Keep in mind that adults need to stay regulated to help children. PAVE provides resources to help adults work on their own self-control and support their children:

Behavior is a child’s attempt to communicate

Simple, consistent, predictable language is critical for teaching and reinforcing behavior, says Kelcey Schmitz, who works for the University of Washington School Mental Health Assessment, Research, and Training (SMART) Center.

“PBIS is a game changer for children and youth with behavior challenges and their teachers and caregivers,” Schmitz says. “In fact, everyone can benefit from PBIS. Behavior is a form of communication, and PBIS aims to reduce problem behavior by increasing appropriate behavior and ultimately improving quality of life for everyone. The same approaches used by schools to prevent problem behaviors and create positive, safe, consistent and predictable environments can be used by families at home.”

Schmitz, an MTSS training and technical assistance specialist, provides the following specific tips for creating a successful PBIS home environment.

Support Positive Behavior before there is a problem

PBIS is set up with three layers—called tiers—of support. The parent-child relationship is strengthened by loving and positive interactions at each tier.

Tier 1 support is about getting busy before there is a problem. Much like learning to wash hands to prevent getting sick, expected behavior is taught and modeled to prevent unexpected behaviors.  Parents can look at their own actions and choices and consider what children will see as examples of being respectful, responsible, and safe.

Tiers 2 and 3 are where adults provide more support for specific behaviors that are getting in the way of relationships or how the child or youth functions. In a school setting, Tier 2 is for students who need a social group or some extra teaching, practice, and reinforcement.

Tier 3 supports include a Functional Behavioral Assessment (FBA) to find out why the behavior is occurring, and an individualized Behavior Intervention Plan (BIP). PAVE provides a video: Behavior and School: How to Participate in the FBA/BIP Process.

Any student may access supports that include aspects of Social Emotional Learning at all three Tiers. At home, Tiers 2 and 3 naturally will be more blended and may include support from a community provider. Note that targeted interventions in Tiers 2-3 work best when Tier 1 is already well established.

Define, teach, and routinely acknowledge family expectations

  • Discuss how you want to live as a family and identify some “pillars” (important, building-block concepts) that represent what you value. Talk about what those pillars look and sound like in every-day routines. To help the family remember and be consistent, choose only 3-5 and create positive statements about them. Here are a few examples:
    • Speak in a respectful voice.
    • Be responsible for actions.
    • Be safe; keep hands, feet, and objects to self.
  • Identify a couple of “hot spots” to begin. Challenging behaviors often occur within routines.  Perhaps mornings or mealtimes create hot spots for the family. After discussing 1-2 ways to be respectful, responsible, and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” for practicing the plan and assign each family member one pillar to teach to the rest.
  • Behaviors that get attention get repeated. Notice when a child does the right thing and say something about each success: “I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right!
  • Remember this catchy phrase, “5-and-1 gets it done” to ensure five positive interactions for each negative interaction. When the expected behavior becomes routine, the reinforcement can fade away.

Create engaging and predictable routines

  • Children crave structure and routine. Adults may look forward to a relaxing evening or weekend, but kids often need regular activity and engagement. Consider that either the kids are busy, or the adults are busy managing bored kids!
  • Use visuals to create predictability. A visual schedule can display major routines of the day with pictures that are drawn, real photos or cut-outs from magazines. Create the schedule together, if possible.  Parents can ask a child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

  • Teach, pre-teach, and re-teach. Children need to learn behavior just like they learn colors and shapes. A quick reminder can help reinforce a developing skill: “When we get in the car, sit up, buckle up, and smile!”
  • Give transition warnings or cues to signal the end of one activity and the beginning of another: “In five minutes, it will be bath time.”
  • First/then statements set up a child for delayed gratification: “First take your bath; then we can play dolls.”
  • Focus on Go instead of Stop. Children often tune out words like NoDon’t and Stop and only hear the word that comes next, which is what an adult is trying to avoid. Tell a child what to do instead of what not to do: “Take your plate and put it in the sink.” Save Stop and No for dangerous circumstances that need a quick reaction.
  • Choices prevent power struggles: “Would you rather play for five more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or the green ones.”

While these strategies may not eliminate all problem behaviors, they create consistency, predictability, and a more positive atmosphere. They teach new skills to help children get their needs met. The solid foundation will help even if challenging behaviors persist by creating a bedrock for additional layers of support.

Here are places to seek additional information:

Mental Health Education and Support at School can be Critical

A Brief Overview

  • Alarming statistics indicate the pandemic worsened many 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.
  • President Joe Biden issued a Fact Sheet about the nation’s mental health crisis on March 1, 2022, as part of his State of the Union message. This article includes some of what the president shared about youth impacts.
  • Washington State’s 2021 Healthy Youth Survey confirms that children and youth are struggling to maintain well-being.
  • These outcomes make adolescence a critical time for mental health promotion, early identification and intervention. Read on for information and resources.
  • The emotional well-being of students may be served through Multi-Tiered Systems of Support (MTSS), which provide a structure for schools to provide education and supports related to student well-being schoolwide.
  • Students with high levels of need 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).

Full Article

Alarming statistics indicate that children and young people are in crisis. Governor Jay Inslee issued an emergency proclamation for children’s mental health on March 14, 2021. Data from Washington’s 2021 Healthy Youth Survey confirm the distressing trends:

Seven out of ten students in tenth grade report feeling nervous, anxious, on edge, or cannot stop worrying. Eight percent said they tried suicide within the past year. Almost 40 percent said their feelings were disturbing enough to interrupt their regular activities, and more than 10 percent of students said they didn’t have anyone to talk to about their feelings. According to the Centers for Disease Control and Prevention (CDC), only about half of young people who need behavioral health services get them.

According to the 2021 statewide survey, students with disabilities struggle more than most. Also over-represented are girls, students from lower income households, and students whose gender or sexuality is non-binary. Non-binary refers to more than two things; it’s a term often used when discussing people who identify as Lesbian, Gay, Bi-sexual, Transgender, Queer, or questioning (LGBTQ+). LGBTQ+ youth can seek crisis help and more from The Trevor Project.

“Reports of our children suffering with mental health issues are a worrisome public health concern,” said Umair A. Shah, MD, MPH, Washington’s Secretary of Health. “Mental health is a part of our children’s overall health and well-being. It is imperative that we all continue to work together to fully support the whole child by providing information and access to behavioral health resources to youth and the trusted adults in their lives.”

Concerns are nationwide. On March 1, 2022, President Joe Biden issued a Fact Sheet stating that grief, trauma, and physical isolation during the past two years have driven Americans to a breaking point:

“Our youth have been particularly impacted as losses from COVID and disruptions in routines and relationships have led to increased social isolation, anxiety, and learning loss.  More than half of parents express concern over their children’s mental well-being. An early study has found that students are about five months behind in math and four months behind in reading, compared with students prior to the pandemic.

“In 2019, one in three high school students and half of female students reported persistent feelings of sadness or hopelessness, an overall increase of 40 percent from 2009. Emergency department visits for attempted suicide have risen 51 percent among adolescent girls.”

Mental Health support to students is a statewide priority

Recognizing the unmet needs, Washington State’s 2022 legislature passed a variety of bills to increase support to children and youth with behavioral health conditions. Here are a few examples:

  • HB 1664: Provides funding and incentives for schools to increase numbers of staff who provide physical, social, and emotional support to students. Schools are responsible to report to the state how these funds were used for hiring staff that directly support students and not something else.
  • HB 1800: Requires Health Care Authority (HCA) to build and maintain a website (“parent portal”) to help families seek out behavioral health services. Also supports growth and training requirements for behavioral health ombuds serving youth through the Office of Behavioral Health Consumer Advocacy.
  • HB 1834: Establishes a student absence from school for mental health reasons as an excused absence.
  • HB 1890: Creates an advisory group under the Children and Youth Behavioral Health Work Group (CYBHWG) to build a strategic plan for children, youth transitioning to adulthood, and their caregivers. Also establishes a $200/day stipend (up to 6 meetings per year) for members of the CYBHWG with lived experience who are not attending in a paid professional capacity.

TIP: Family caregivers can get involved in advocacy work!

Here’s another TIP: Families can ask their school who is on site to support students with their mental health needs. Some school districts seek support from an Educational Service District (ESD) to meet student behavioral health needs, so families can also ask whether ESD supports are available. Some ESDs are licensed as behavioral health providers—just ask.

What is MTSS, and why learn this acronym to ask the school about it?

A priority for agencies involved in statewide work is implementation of Multi-Tiered Systems of Support (MTSS). Through MTSS, schools support well-being for all students and offer higher levels of support based on student need. Social Emotional Learning (SEL) is key to MTSS, which creates a structure for positive behavioral supports and trauma-informed interventions.

The Office of Superintendent of Public Instruction (OSPI) is the state educational agency for Washington schools. In its 2021 budget, OSPI prioritized MTSS as part of a plan to Empower all Schools to Support the Whole Child. In January, 2021, OSPI was awarded a five-year, $5.3 million grant from the U.S. Department of Education help districts implement MTSS. 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 work 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.

How a student is supported in their life planning could have an impact. PAVE provides a toolkit of information about how to support a student in their preparations for graduation and beyond: School to Adulthood: Transition Planning Toolkit for High School, Life, and Work.

Note that a student with a mental health condition might qualify for an Individualized Education Program (IEP) under the category of Other Health Impairment (OHI), which captures needs related to various medical diagnoses. Other categories that often overlap with behavioral health are Autism and Traumatic Brain Injury (TBI). IEP eligibility categories are described in the Washington Administrative Codes (WAC 392-172A-01035).

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 Instruction (SDI), then the student may be eligible for an 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 (SDI) and 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. 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 most of the cost of behavioral health services for students who are covered by Medicaid and on an IEP. The Health Care Authority provides information about school-based 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 and curriculum first. If the student is 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.

If general education is not working, the IEP team is responsible to consider all placement options to find the right fit. There is not a requirement to rule out every “less restrictive” option before choosing a placement that the team agrees will best serve the student’s needs.

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. Districts may also consider schools that are not listed. Washington State has almost no residential options for students. Schools almost always send students to other states when residential placement is needed.

On May 23, 2022, a Washington affiliate of National Public Radio (KUOW) provided a report about the lack of residential programs in the state and the challenges for families whose students go out of state for residential education: Washington is sending youth in crisis to out-of-state boarding schools; taxpayers pick up the tab.

Residential placement may be necessary because educational needs cannot be served unless medical needs are fully supported. School districts may be responsible in those situations to pay for a residential placement. 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 and teachers

The Healthy Youth Survey is conducted every other year and was delayed from 2020 to 2021 because of the pandemic. Over the years, results are shared along with tips for families and schools. Here are a few considerations built from various data points within the survey:

Hopeful students:

  • Are more interested in schoolwork: Is there a way to make every day at school more connected to what a child cares about?
  • See people who can help: Who are the adults at school that a student can trust and go to for encouragement or guidance?
  • Believe that school is relevant to life: Who is helping the student connect what they are learning now to who they want to become?
  • Are academically successful: Are supports in place to provide adequate help so the student can succeed in learning? Evidence-based instructional strategies are key when students struggle in reading, writing, or math because of learning disabilities, for example.

TIP: Make sure these four topics are part of a school/family discussion when a student is struggling with emotional well-being or behavior that may be impacted by hopelessness.

A 2018 handout includes tips for parents and other adults who support 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 children shouldn’t have access to.

A press for school-based services and mental health literacy

Advocacy for direct school-based mental health services and education about mental health topics 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 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 SMART Center in partnership with the non-profit Chad’s Legacy Project in 2021 established an online Student/Youth Mental Health Literacy Library. Intended for staff at middle and high schools, the library provides resources to help schools choose curricula for mental health education on topics that include Social Emotional Learning, Substance Use Disorder, and Suicide Prevention.

Goals of mental health literacy are:

  • Understanding how to foster and maintain good mental health
  • Understanding mental disorders and their treatments
  • Decreasing Stigma
  • Understanding how to seek help effectively for self and others

TIP: Families can direct their schools to this resource to support development or growth of a mental health education program.

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

  • Suicide Prevention Lifeline (1-800-273-TALK): After July 16, 2022, call 988
  • 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)
  • 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

Further information on mental health and suicide:  

Family Support

  • 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.
  • A Facebook group called Healthy Minds Healthy Futures provides a place to connect with other families.
  • Family caregivers can request support and training from COPE (Center of Parent Excellence), which offers support group meetings and direct help from lead parent support specialists as part of a statewide program called A Common Voice.
  • Washington State Community Connectors (WSCC) sponsors an annual family training weekend, manages an SUD Family Navigator training, and offers ways for families to share their experiences and support one another. With passage of HB 1800 in 2022, WSCC is working with the Health Care Authority to build a statewide website to help families navigate behavioral health services.
  • Family, Youth, and System Partner Round Table (FYSPRT) is a statewide hub for family networking and emotional support. Some regions have distinct groups for young people.

Behavior and School: How to Participate in the FBA/BIP Process

This 2-part training has information about how to support a child’s behavior at school. When behavior gets in the way of learning, schools are responsible to figure out what the child is trying to communicate and to teach the child what to do instead.

PAVE’s accessible, fillable worksheet goes with the videos to help with behavior planning.

The process of figuring out why a child is acting out is called a Functional Behavioral Assessment—FBA for short. The first video in this 2-part series is about the FBA process.

A Behavior Intervention Plan—BIP for short—is a working document that the school and family build together and review regularly to make sure the child is supported with positive reinforcement and encouragement for meeting behavioral expectations. The second video in this 2-part series is about BIP development.

PAVE provides a Sample Letter to Request a Functional Behavioral Assessment to help families formally ask the school to assess their child’s behavior and consider how to thoughtfully build a behavior support plan.

Schools are guided by the state to use best practices when evaluating and serving students with special needs. The Office of Superintendent of Public Instruction (OSPI) is the state educational agency in Washington State. OSPI’s website is k12.wa.us. A page called Model Forms for Services to Students in Special Education has links to downloadable forms schools use to develop IEPs, Section 504 Plans, and more.

Here are links to OSPI’s model forms for:

After you view the video, please take a quick moment to complete our survey. Your feedback is valuable!

Sample Letter to Request a Functional Behavioral Assessment

When a student’s behavior gets in the way of their learning and/or the learning of others, the school is responsible to figure out how to support behavioral expectations. One way to do that is to assess why the student might be acting out and use that information to consider how positive behavioral interventions might teach the student what to do instead.

The end of this article includes a sample letter to ask the school to begin a specific evaluation called a Functional Behavioral Assessment (FBA). Data from the FBA is used to build a Behavior Intervention Plan (BIP).

PAVE provides a video training called Behavior and School: How to Participate in the FBA/BIP Process.

Ideally a school will notice if a student’s behavior has patterns of disruption and begin the FBA/BIP process before a student with disabilities is disciplined. PAVE provides an article: What Parents Need to Know when Disability Impacts Behavior and Discipline at School.

A teacher or school administrator might alert parents and request consent to begin an FBA. The Office of Superintendent of Public Instruction (OSPI) is the state agency for Washington schools. OSPI provides guidance about discipline in a Technical Assistance Paper (TAP #2). Included are best practices for schools to follow when there are persistent behavioral concerns:

  • Develop behavioral goals in the Individualized Education Program (IEP)
  • Provide related services needed to achieve those behavioral IEP goals (specific therapies or counseling, for example)
  • Provide classroom accommodations, modifications and/or supplementary aids and supports (a 1:1 paraeducator, for example)
  • Provide support to the student’s teachers and service providers (staff training)
  • Conduct a reevaluation that includes a Functional Behavioral Assessment (FBA)
  • Develop a Behavioral Intervention Plan (BIP), as defined in the Washington Administrative Code (WAC 392-172A-01031

Manifestation Determination

If an FBA process begins after a student has been excluded from school through a disciplinary removal (suspension, expulsion, or emergency expulsion), families can review their procedural safeguards to understand rules related to a special education process called Manifestation Determination.

Here are the basics: When a behavior “manifests” (is directly caused by) a disability condition, then there is recognition that the student has limited fault for violating the student code of conduct. Management of behavior is part of the special education process. A Manifestation Determination meeting is to talk about how a student’s services can better serve their needs to prevent future behavioral episodes that are getting in the way of education.

Students with Individualized Education Programs (IEPs) may not be excluded from their regular educational placement, due to discipline, for more than 10 days in a school year without the school and family holding a Manifestation Determination meeting. According to the Washington Administrative Code (WAC 392-172A-05146),thestudent’s behavior is considered a manifestation of disability if the conduct was:

  • Caused by, or had a direct and substantial relationship to, the student’s disability
  • The direct result of the school district’s failure to implement student’s IEP

When these criteria are met, the school is responsible to review and amend the student’s services to ensure that the behaviors are addressed to prevent future escalations. If there isn’t a BIP, the school is required to develop one by initiating an FBA. If there is a BIP, the school is required to review and amend it to better serve the student’s needs.

Request FBA formally, in writing

Family caregivers can request an FBA/BIP process any time there are concerns that a student’s behavior is a barrier to their education. Families have the right to participate in all educational decision making for their students. See PAVE’s article: Parent Participation in Special Education Process is a Priority Under Federal Law.

Make any request for an evaluation in writing. This is important because:

  1. There will be no confusion about how/when/why request was made.
  2. The letter provides critical initial information about what is going on with the student.
  3. The letter supports a written record of family/school interactions.

If the family wishes, they can attach information from outside providers with their request. For example, if an outside therapist or counselor has recommendations for behavioral interventions at school, the family has the option to share those. The school district is responsible to review all documents and respond with written rationale about how the information is incorporated into recommendations. Families may choose to disclose all, a portion, or none of a student’s medical information. Schools may not require disclosure of medical records.

Family caregivers/guardians must sign consent for any school evaluation to begin.

The FBA/BIP might prevent a shortened school day

According to OSPI, serving a student through a Behavior Intervention Plan (BIP) is a priority. OSPI discourages schools from reducing the student’s schedule because of behaviors:

“District authorities should not use a shortened school day as an automatic response to students with challenging behaviors at school or use a shortened day as a form of punishment or as a substitute for a BIP. An IEP team should consider developing an IEP that includes a BIP describing the use of positive behavioral interventions, supports, and strategies reasonably calculated to address the student’s behavioral needs and enable the student to participate in the full school day.”

Special Education is a service, not a location within the school

Please note that a request for behavioral support is NOT a recommendation to remove a student from the regular classroom and move them into an exclusive learning environment. Federal and state laws require that students eligible for special education services receive their education in the Least Restrictive Environment (LRE) to the maximum extent appropriate.

Special Education is a service, while LRE refers to placement. PAVE’s article provides further information: Special Education is a Service, Not a Place.

General education classrooms and spaces are the least restrictive. A child may be placed in a more restrictive setting if an IEP team, which includes family participants, determines that FAPE is not accessible even with specially designed instruction, accommodations, modifications, ancillary aids, behavioral interventions and supports, and other documented attempts to support a Free Appropriate Public Education (FAPE) within the general education environment.

If the student was removed from their previous placement prior to a manifestation determination meeting, the school district is responsible to return the student to their placement unless the parent and school district agree to a different placement as part of the modification of the student’s services on their IEP and BIP.

Sample letter to request an FBA

Below is a sample letter family caregivers can use when requesting a Functional Behavioral Assessment (FBA). You can cut and paste the text into your choice of word processing program to help you start a letter that you can print and mail or attach to an email. Or you can build your letter directly into an email format. Be sure to keep a record of all requests and correspondence with the school.

Your Name
Street Address
City, State, Zip
Date

Name (if known, otherwise use title)
Title/Director of Special Education/Special Services Program Coordinator
School District
Street Address
City, State, Zip

Dear Name (if known, otherwise use district person’s title):

I am requesting a Functional Behavioral Assessment (FBA) for my [child, son, daughter], NAME, (BD: 00-00-0000).

I have concerns that (NAME) is not receiving full educational benefit from school because of their struggles to meet behavioral expectations due to their disability circumstances. Their condition includes [brief summary of any diagnoses], which makes it difficult to [brief summary of the challenges]. I believe this has become a pattern of behavior that needs to be addressed with a positive behavioral support plan so my child with special educational needs can receive a Free Appropriate Public Education (FAPE).

I understand that the FBA will look for triggers and seek to understand what is happening in the environment when my child’s behaviors become problematic. I have learned that these are “antecedents” that the school can identify through data tracking. I hope we can begin to understand how [name] may be trying to communicate their needs through these behaviors. Here are some of my thoughts about what might be going on:

  • Use bullet points if the list is long.
  • Use bullet points if the list is long.
  • Use bullet points if the list is long.

I look forward to discussing the results of the FBA and working with school staff on development of a Behavioral Intervention Plan (BIP). I hope we can choose a small number of target behaviors to focus on in the BIP. I understand that we will work together to identify replacement behaviors that the school can teach [name] to do instead. I hope these will be skills we can work on at home also. I look forward to learning how we can partner to encourage the learning that I know [name] is capable of.

I have attached documentation from [any outside providers/therapists/counselors who may have provided letters or reports or shared behavioral recommendations].

I understand that I am an equal member of the team for development of educational services and that I will be involved in any meetings where decisions are made regarding my child’s access to a Free Appropriate Public Education (FAPE). I will also expect a copy of the FBA and a draft of the BIP before our meeting.

I understand you must have my written permission for this assessment to be administered, and I will be happy to provide that upon receipt of the proper forms.

I appreciate your help in behalf of [child’s name]. If you have any questions please call me at [telephone number] or email me at [email address, optional].

Sincerely,

Your Name

CC: (Names and titles of anyone else you give copies to)

You can email this letter or send it by certified mail (keep your receipt), or hand carry it to the district office and get a date/time receipt. Remember to keep a copy of this letter and all school-related correspondence for your records. Get organized with a binder or a filing system that will help you keep track of all letters, meetings, conversations, etc. These documents will be important for you and your child for many years to come, including when your child transitions out of school.

Please Note: PAVE is a nonprofit organization that provides information, training, individual assistance, and resources. PAVE is not a legal firm or legal service agency, and the information contained in this handout is provided for informing the reviewer and should not be considered as a means of taking the place of legal advice that must be obtained through an attorney. PAVE may be able to assist you in identifying an attorney in your area but cannot provide direct referrals. The contents of this handout were developed under a grant from the US Department of Education. The contents do not represent the policy of the US Department of Education and you should not assume endorsement by the Government.

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 a behavioral health condition.
  • The Washington State Health Care Authority (HCA) hosts website links with information about the law, which allows Family Initiated Treatment (FIT). The landing page includes an email address: hcafamilyinitiatedtreatment@hca.wa.gov.
  • Access to FIT is a topic 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 about group membership, public meetings, resources, events and training is available on the HCA website.
  • 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 2022 youth rankings list Washington 39th 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.  

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.

University 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, staffing shortages and other limitations within the behavioral health system have slowed implementation of 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 eligible for Apple Health, Wraparound with Intensive Services (WISe) is Washington’s most intensive outpatient treatment. PAVE provides an article: WISe Provides Team-Based Services for Washington Youth with Severe Behavioral Health Disorders.

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 HCA leadership.

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

What is required for involuntary treatment?

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 be involuntarily 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.

Family Support

For individualized, non-emergency support, please click Get Help and someone from PAVE will contact you. Family Voices of Washington, PAVE’s Family-to-Family Health Information Center, is another place for information and resources.

In addition to PAVE, here are places for family support:

  • COPE (Center of Parent Excellence) offers support group meetings and direct help from lead parent support specialists as part of a statewide program called A Common Voice.
  • Family, Youth, and System Partner Round Table (FYSPRT). Regional groups are a hub for family networking and emotional support. Some have distinct groups for young people.
  • Washington State Community Connectors (WSCC) sponsors an annual family training weekend, manages an SUD Family Navigator training, and offers ways for families to share their experiences and support one another. With passage of HB 1800 in 2022, WSCC is working with the Health Care Authority to build a statewide website (Parent Portal) to help families navigate behavioral health services.
  • Healthy Minds Healthy Futures is an informal network of family caregivers on Facebook. The group advocated for Family Initiated Treatment (FIT) and is part of the work to build the Parent Portal website.

Additional 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.govPlease 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.

WISe Provides Team-Based Services for Washington Youth with Severe Behavioral Health Disorders

A Brief Overview

  • WISe behavioral healthcare teams serve children and youth 20 or younger whose conditions are too severe to benefit appropriately from regular visits to a community clinician and/or therapist.
  • To qualify for WISe, the young person must be eligible for Apple Health, which is the public health program for Washington State. WAC 182-505-0210 describes Apple Health eligibility standards.
  • WISe was created as a response to the T.R. et al. lawsuit, settled in 2013.
  • Different agencies manage WISe programs in various regions of the state. The Health Care Authority manages a downloadable list of WISe agencies, organized by county. Families can contact their area agency by calling the phone number on this referral list.
  • Read on for various places families might seek solidarity and support. One option is Family, Youth, and System Partner Round Table (FYSPRT), which is a network of groups that meet to discuss what’s working/not working in behavioral healthcare systems in their communities.

Full Article

Children and youth with intensive needs related to behavioral health may be eligible for services from a statewide program called WISe–Wraparound with Intensive Services. A WISe team includes various clinical and professional staff and certified peers, who may support the emotional needs of family members.  

WISe services are provided in the community—outpatient—for children and youth 20 or younger who are eligible for public insurance, called Apple Health in Washington State. To be assigned to a WISe team, the young person must demonstrate a need for services that are more intensive than what is provided from regular visits to a community clinician and/or therapist.

What does behavioral health mean?

Behavioral health is a broad term describing services for people with conditions based in the brain that impact their behavior. Bipolar disorder, schizophrenia, and substance use disorder (SUD) are examples of severe behavioral health conditions impacting some adults and young people.

Other childhood conditions are many and varied, and not everyone uses the same terms for the same symptoms. The Child Mind Institute is a place for information about childhood symptoms, diagnoses, and options for treatment and support.

Some developmental conditions, such as autism, are considered behavioral health conditions when symptoms have a significant impact on behavior. A person with a complicated behavioral health condition may have impacts in multiple areas and may be given a “dual diagnosis.”

Who is eligible for WISe services?

WISe services are for children and youth until their 21st birthday. WISe is only approved if the patient has used other, less intensive therapies, with little to no improvement.  Once approved for services, a young person may spend time on an “interest list,” receiving limited support, before a full team is formed to serve them.

The young person is evaluated with a Child and Adolescent Needs and Strengths (CANS) intensive mental health screening tool, called the CANS-SCREEN.

Five core areas are evaluated:

  1. Life functioning
  2. Behavioral and emotional needs
  3. Risk behaviors
  4. Caregiver resources and needs
  5. Diagnosis and prognosis

According to the CANS-SCREEN, “The care provider, along with the child/youth and family as well as other stakeholders, gives a number rating to each of these items. These ratings help the provider, child/youth and family understand where intensive or immediate action is most needed, and also where a child/youth has assets that could be a major part of the treatment or service plan.”

WISe requires public health insurance eligibility

In addition to meeting criteria based on their symptoms, a young person must be eligible for Apple Health, which is the name for public health insurance in Washington State. The Washington Administrative Code (WAC 182-505-0210) describes Apple Health eligibility standards for children.

Apple Health is most often administered by Managed Care Organizations (MCOs). In 2022, plans are provided by Amerigroup, Community Health Plan of Washington (CHPW), Coordinated Care, Molina, and United Healthcare. Families can request case management from their MCO to help them navigate and understand healthcare options available to them.

An MCO care coordinator/case manager commonly is the person who refers a young person into WISe, although referrals also can be made by the family, a provider, a county health agency, or someone else with knowledge of the circumstances.

Different agencies manage WISe programs in various regions of the state. The Health Care Authority manages a downloadable list of WISe agencies, organized by county. Families can contact their area agency by calling the phone number on this referral list.

Who is on the WISe team?

Team members include:

  • Natural supports (family, friends, religious leaders…)
  • A Care Coordinator (who oversees clinical aspects of the case)
  • Therapist
  • Professionals (clinicians/prescriber if needed, Child Protective Services, probation officers and others who are relevant)
  • Certified peer support specialist
  • Others upon request (youth peer, school staff…)

The clinical group creates a Team Vision Statement, explaining what they plan to achieve and how they will accomplish it through collaborative work. The family also creates a Vision Statement, showing what strengths they would like to build in their family and what tools they need to make their goals possible.

WISe requires family engagement

The time commitment for WISe is significant. Clinicians engage with the whole household on topics related to school, health, work, relationships, home organization, and more.

WISe publishes data about its service delivery. According to January 2021 Service Intensity Estimates, an average family spends 10 or more hours per week engaged with WISe services. This could be much higher, especially in the beginning. Parents/Caregivers are offered therapy sessions and opportunities to engage with parent peers. 

WISe clinicians are responsible to integrate their work to fit with a family’s schedule, often seeking creative ways to tuck sessions into already busy days. For example, a clinician describes a day when they picked up a child at school and conducted a session in the car while driving the child to their next activity. After work, parent met with the clinician while the adults watched the child swim.

Family experiences with WISe are varied. Some say WISe created a critical turning point that enabled family survival. Others cite high staff turnover as a barrier to ideal therapeutic outcomes. The program is most effective with buy-in from the young person and their caregivers and when services are provided to match family needs and schedules.

Does my child have to agree to WISe services?

WISe is a voluntary program. Families may be able to motivate their child to participate by getting services started through Family Initiated Treatment (FIT). FIT was established as a pathway to treatment for youth 13-17 when Washington passed the Adolescent Behavioral Health Care Access Act in 2019. A parent/caregiver can initiate outpatient services to attempt to get the youth to engage. If after 12 visits (within 3 months) the youth is still unwilling to engage with the treatment, the family must end services. They have the option to engage a different provider to try FIT again.

What if WISe isn’t enough?

The WISe program is the most intensive outpatient program that the state offers. If services don’t seem to be working, the family might check the WISe Service Delivery, Policy, Procedure and Resource Manual to see whether there is more the program could be doing. The family also might check if the child could get additional services from another agency to complement the work with WISe. For example, service providers from a special education program at school or from the Developmental Disabilities Administration (DDA) can collaborate with a WISe team.

If a child needs inpatient services, they may be eligible for a referral into the Children’s Long-term Inpatient Program (CLIP). Children placed on a waiting list for CLIP often receive ongoing services from WISe. PAVE provides an article: Children’s Long-Term Inpatient Program (CLIP) Provides Residential Psychiatric Treatment.

History, Advocacy, and Family Support

WISe was created as a response to the T.R. et al. lawsuit, settled in 2013. The class-action lawsuit named ten plaintiffs who were denied treatment for schizophrenia, depression, bipolar disorder, and other serious psychiatric conditions. Most were institutionalized repeatedly and for extended periods, despite recommendations by therapists and case workers that they return home and receive services in their homes and local communities.

Disability Rights Washington (DRW) provided attorney support for the settlement of the T.R. et al. lawsuit. DRW is monitoring current issues related to children being underserved through WISe and encourages families with concerns to contact attorney Susan Kas: susank@dr-wa.org.

Another result of the legal settlement was a statewide network of stakeholders who meet regularly to discuss what works/doesn’t work within the behavioral health system for youth. That network is called Family, Youth, and System Partner Round Table (FYSPRT). Regional FYSPRTs report to a statewide FYSPRT to share input for system improvement. Regional groups are a hub for family networking and emotional support in addition to serving as a place to engage with community health providers, insurance case managers, and other professionals. Some FYSPRTs have distinct groups for young people to meet and support one another. Many FYSPRT groups use online meeting platforms due to the pandemic.

Another place for families engaged in behavioral health services to network is Washington State Community Connections (WSCC), which sponsors an annual family training weekend, manages an SUD Family Navigator training, and offers a variety of ways for families to share their experiences and support one another. WSCC in 2022 is engaged in work to help build a statewide website to help families navigate behavioral health services across systems. Stay tuned!

Families can get direct support from A Common Voice, a statewide non-profit staffed with Parent Support Specialists who have lived experience parenting a child with challenging behavioral health conditions. The program offers virtual support groups and 1:1 help. A Common Voice is part of the Center of Parent Excellence (COPE), managed by the state’s Health Care Authority. The COPE project website provides a schedule of support group meetings and contact information for regional lead parent support specialists.

An informal place to connect with other families is a Facebook group called Healthy Minds Healthy Futures. Advocates in this group initiated work for an interactive website for parents and are engaged in a push for HB 1800 to expand behavioral health services for minors statewide.

Families wanting to advocate for system change can participate in meetings of the Children and Youth Behavioral Health Work Group (CYBHWG). The work group 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.

Parity laws, thoughtful language, stopping stigma

Keep in mind that a healthy mind is part of a healthy body, and U.S. laws protect parity for all illness conditions. Despite those protections, discrimination and stigma are commonly discussed within behavioral healthcare systems. Here are a few tips and considerations to help reduce stigma:

  • All behaviors start in the brain, so an impairment that impacts the brain is going to affect behavior. Some behaviors are not a person’s fault; that’s why they need treatment, support, and services.
  • Specific person-first language can help reduce stigma. For example, instead of calling someone bipolar or schizophrenic, say they are a person with bipolar disorder or schizophrenia.
  • An exception to person-first language is in the autism community, which has collectively agreed to use the term “autistic” to describe someone on the spectrum.
  • Saying that someone has “behavioral health,” or “mental health” does not describe their condition or what they need help with. Everyone has mental health! A better choice is to describe the condition/concern and the need for help: “This youth’s schizophrenia is impacting every aspect of life, and they need a range of services and treatments to recover and move forward with their life plans.”
  • A person who dies from suicide did not commit a crime, so the word “commit” is inappropriate to use when discussing suicide.

For additional information on related topics, including areas where behavioral health impacts school, see PAVE’s article: Mental Health Education and Support at School can be Critical