Tag: family support

Tips to Help Parents Plan for the Upcoming School Year

Posted on by Nicol Walsh

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.

A Brief Overview

Introduction

By getting organized, you can plan for fall and beyond. This article includes resources and information to help you get ready for a new school year. 

The Back to School Checklist from PAVE includes a downloadable picture view (infographic) of essential tasks.

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.

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.

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

  1. Do the Present Levels of Performance describe your child in current and accurate ways? If not, 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. The state’s Office of Superintendent of Public Instruction (OSPI) offers 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), based on the annual renewal date listed on the IEP’s cover page? PAVE has 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 information 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 mentioned in the Adverse Impact Statement must have a service or accommodation that applies to the area of need. Services and accommodations can apply to multiple areas of need.
  6. Is the IEP 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 IEP 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 use 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. The state’s Office of Superintendent of Public Instruction (OSPI) has model forms for Section 504 Plans and IEP with Secondary Transition and IEP without Secondary Transition. If the accommodations need work, make notes and plan to request a meeting.

  1. 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 has a video to help: Behavior and School: How to Participate in the FBA/BIP Process.
  2. Think about 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.
  3. You can ask for an IEP or 504 plan 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 Special Education Staff directory including local, regional and state level staff.
  4. 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.
  5. 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.

Mark your calendar with important dates

IEP Annual Renewal date (usually on the cover sheet of the IEP).

The IEP team, including you, needs to meet before that date to review the IEP and make any necessary changes. Mark the renewal date on your calendar and set yourself a reminder to schedule an IEP team meeting about a month before that.

If something happens and you cannot meet 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.

Keep in Mind: If you want an additional meeting, set a calendar reminder to contact the district and as soon as soon as teachers are back at work to get your meeting on everyone’s calendar.

Is a new evaluation due?

A new evaluation is required every three years to guarantee ongoing eligibility and to make sure that services meet current needs. Note those dates on your calendar.

You can ask for 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 has more information and a sample letter for requesting an IEE. As you review your student’s documents, think about whether asking for an evaluation is part of what you want to do. Evaluation requests must always be in writing, and schools are responsible for providing forms to support written requests.

Parent Conferences and other important school dates:

Review the school’s calendar and make notes of parent conferences and other important dates.

If your student will be a graduating senior, plan for senior year activities and make sure to allow plenty of time to request any accommodations. You may want to begin this process in early January.

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.

Behavior Intervention Plan (BIP)

A Behavior Intervention Plan (BIP) often needs to be rewritten in a new school year because of changes in staffing and environment. You may want to ask for a fresh Functional Behavioral Assessment (FBA) early in the new school year to make sure 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 a 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 about 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 expected student behavior and what might be grounds for a suspension or expulsion. Review the rules with your child and do your best to check that they understand.

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

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

If you notice your child’s emerging skills are lagging during summer vacation, write down what you observe. When school starts again, pay attention to how quickly or if those skills return. This information is important for 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.

Is your child with disabilities included with non-disabled peers? How they are included is important to know

Special education laws require education in the Least Restrictive Environment (LRE) to the maximum (largest) 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: equity doesn’t mean equal. It means people get the support they need to have the same opportunities.

Parents can support their child’s inclusion by thinking about how services might be given in the general education setting. If you think your child’s inclusion can be improved, bring specific ideas into an IEP meeting. 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, think about 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 important points in the IEP, 504 Plan, or Behavior Intervention Plan that you want to call attention to?

All 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.

Keep in Mind. For a quick guide to keep your back-to-school planning on track,The Back to School Checklist from PAVE includes a downloadable picture view (infographic) of essential tasks.

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 has 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.

Resources

Here are on demand training videos and articles from PAVE to help parents understand special education rights, the special education process, and family involvement.

Steps to Read, Understand, and Develop an Initial IEP

Posted on by Nicol Walsh
Download the fillable Worksheet : Steps to Read, Develop, and Understand an IEP

A Brief Overview

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

Full Article

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

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

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

What is the student’s eligibility category?

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

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

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

Know what’s in the IEP before you meet

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

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

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

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

Start with the Service Matrix

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

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

Refer to the Present Levels statements

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

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

Compare Service Matrix and LRE statement

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

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

Read the list of accommodations.

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

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

Accommodations for state testing

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

Communication and Prior Written Notice (PWN)

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

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

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

Sign Consent for services to begin

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

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

IEP Tips: Evaluation, Present Levels, SMART goals

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

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

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

Step 1: Evaluate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Grid for Goal Development

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

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

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

Review whether IEP Goals are SMART:

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

Learn more about SMART Goals in this short video:

Download IEP Tips and SMART Goals as a fillable PDF!

Home for the Holidays: The Gift of Positive Behavior Support

Posted on by Nicol Walsh

A Brief Overview 

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

Full Article 

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

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

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

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

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

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

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

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

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

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

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

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

Here is an example: 

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

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

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

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

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

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

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

Make a list and check it twice: Prevention is key 

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

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

Respond quick as a wink: Reward replacement behavior 

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

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

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

Here are steps to help teach replacement behaviors: 

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

Praise a silent night 

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

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

All is calm: Intervene at the first sign of trouble 

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

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

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

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

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

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

Believe: Be a beacon for hope 

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

Here are a few points to review: 

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

Resources: 

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

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

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

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

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

Posted on by Nicol Walsh
Download the EFMP Enrollment Checklist

A Brief Overview

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

Full Article

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

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

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

Identification and Enrollment 

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

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

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

Assignment Coordination

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

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

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

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

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

Family Support

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

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

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

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

Respite Care

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

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

Getting the most benefit from EFMP

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

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

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

Download the EFMP Enrollment Checklist.

Learn More about EFMP

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

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

Additional Resources

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

Posted on by Nicol Walsh
Download the EFMP Enrollment Checklist


A Brief Overview

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

Full Article

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

Purpose and Intent

The purpose of the EFMP is to –

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

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

Eligibility

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

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

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

Enrollment

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

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

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

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

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

Help with Enrollment

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

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

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

Download the EFMP Enrollment Checklist

Learn More about EFMP

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

Additional Resources

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

Posted on by Nicol Walsh

A Brief Overview

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

Connecting to the World through Mobility

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

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

Ableism, Troublemaking, and the Importance of Mobility

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

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

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

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

Spreading the Word about the Importance of Self-Initiated Mobility

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

Trying Out or Obtaining Mobility Technology

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

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

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

References and Additional Resources:

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

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

UNICEF Assistive Products and Inclusive Supplies

Family Information Guide to Assistive Technology

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

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

Center for Research and Education on Accessible Technology and Experiences CREATE

Back To School Checklist!

Posted on by Nicol Walsh

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

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

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

Here’s a checklist to help you get organized:

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

Below is an infographic of the above information.

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Infant Early Childhood Mental Health

Posted on by Nicol Walsh

A Brief Overview

  • Infant and Early Childhood Mental Health (IECMH) is a term that describes how young children develop socially and emotionally. They learn about their emotions form close and secure relationships with their caregivers and family members. They learn and explore the environment – all in the context of family, community, and culture.
  • Families concerned about a child’s development can call the Family Health Hotline at 1-800-322-2588, with support in multiple languages. Parents can complete a developmental screening online for free at Parent Help 123.
  • PAVE provides an article for next steps after age 3: What’s Next when Early Childhood Services End at Age 3? Another PAVE article for families new to special education: Steps to Read, Understand, and Develop an Initial IEP.
  • PAVE’s Parent Training and Information (PTI) staff help families understand and navigate service systems for children 0-26. Click Get Help on the PAVE website or call 800-572-7368.
  • Early Support for Infants and Toddlers (ESIT) helps young children with disabilities or delays to learn and supports their unique development.

Full Article

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

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

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

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

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

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

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

The evaluation looks at the child’s ability to:

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

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

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

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

If you are concerned about a child’s development:

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

More Resources:

Advocacy Tips for Parents

Posted on by Nicol Walsh

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

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

Before a meeting…

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

At your meeting…

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

After a meeting…

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

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

Helping a Loved One with a Fear of Needles Get Vaccinated

Posted on by Nicol Walsh

Introduction

Families have different reasons for not vaccinating their children against illnesses. The Washington Department of Health (DOH) reports that vaccination rates dropped 13 percent in 2021. If you’ve put off taking your child to get a vaccine because your child falls apart with fear at the sight of a needle, here are some tips and tricks to break through that barrier.

Tips and Tricks

  • Explain why they are getting a vaccination in words they understand. For example, “If you don’t get vaccinated you might get sick and miss your birthday party.”
  • Bring brave with you. A favorite superhero on a picture, a hat, a shirt, or a mask provides something to look at and makes them feel brave while they get their shot. If Grampa is their superhero, bring a picture of him!
  • Don’t lie. Be honest that this isn’t fun. Let them know you understand their feelings and reassure them that they are brave enough to get this accomplished.
  • Tell their doctor or nurse before the appointment that your loved one has a fear of needles and ask for ideas. Go in with a shared plan for how to calm, distract, or reward your brave one.
  • Ask if there’s a cream or spray to numb the injection site. If yes, use this information to explain why they probably won’t feel a thing.
  • Give them control. When do they want to go? Do they want company? Do they have any ideas about how to feel brave or how to earn a reward?
  • Practice breathing slow and easy and talk about how to use that breath anytime you are feeling afraid or anxious. You might mention that calm breathing reduces pain.
  • Bring a treat or preferred distraction for the waiting room: games, shows on the tablet, a favorite toy…or plan some new jokes.
  • If it’s better not to look at anything, help them close or cover their eyes. You can offer a hand to squeeze or something to hold or touch—like a favorite blanket, pillow or stuffed animal—to direct sensory attention away from the place where the needle goes in.
  • If they want you to stay during the injection, be calm yourself. Calm is contagious.

Resources and Related Information

  • Pediatricians build vaccination schedules for children at specific ages and stages to maximize their effectiveness. Waiting until later might harm your child. The Academy of Pediatrics has information on ages and stages and vaccine suggestions.
  • If a person is allergic to eggs, gelatin, polyethylene glycol, or yeast, let a doctor know. Some vaccines include these ingredients. If you ask, there may be another option.
  • If you have read, heard, or thought about something that makes you nervous, tell your doctor. Always ask where information comes from, and check to make sure the source is trustworthy.

Mental Health Education and Support at School can be Critical

Posted on by Nicol Walsh

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.

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

Posted on by Nicol Walsh

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

A 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

Procedural Safeguards: How to File a Special Education Complaint

Posted on by Nicol Walsh

This training has information about parent rights and describes a process for filing a community complaint. When parents believe their child’s school has done something inappropriate related to the Individualized Education Program—their IEP—filing a complaint is one option available.

This training will help you know where to get a community complaint form and walks you through a pretend situation to demonstrate use of the form. The community complaint process is a no-cost option for families of children who receive special education services.

For more information and to access the community complaint form in your language, visit the website of the Office of Superintendent of Public Instruction (OSPI), the state educational agency for Washington State. To find the form, click on the question, “Is there a form for filing a community complaint?” The drop-down menu provides language options to download the form.

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

Families Who Receive In-Home Care Services: Take Note of 2022 Changes

Posted on by Nicol Walsh

A Brief Overview

  • Everyone who gets state-funded in-home care in Washington is affected by a new employment structure for Individual Providers (IPs).
  • The Consumer Direct Care Network of Washington (CDWA) is the new Consumer Directed Employer (CDE) for all individual providers of state purchased in-home care.
  • The CDWA website offers support in multiple ways by online live chat, email, phone, webinars, and in person. See below for direct links and phone numbers.

Full Article

Some individuals with disabilities need help at home for various reasons related to activities of daily living. People who are eligible receive those services as part of a state-funded benefit. A professional who comes to the home to provide that help is called an IP—an Individual Provider.

Washington IPs have historically worked under contracts with various social service agencies, such as Home and Community Services (HCS) and Developmental Disabilities Administration (DDA). Those contracts are changing.

A legal change that takes effect in 2022 means that these employment contracts are managed differently. Every Washingtonian who uses in-home personal care services provided by state agencies is affected, including children and adults with disabilities and people who need in-home help due to aging.

Here’s new vocabulary to describe the change:

Individual Providers (IPs) now work under the Consumer Direct Care Network Washington (CDWA). The CDWA operates as an independent Consumer Directed Employer (CDE).

CDWA will employ approximately 47,000 dedicated caregivers who provide in-home personal care and respite services. Providers are transitioning to this new organization of work in early 2022.  To see what’s happening in your area, check out the map on the CDWA website.  

For information and training materials, and to register for CDWA webinars, please visit the Resources page.

The CDWA website offers multiple ways families and providers can reach out for information: