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

A Brief Overview

Full Article

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

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

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

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

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

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

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

Key guidance and legal protections

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

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

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

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

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

Behavior support is part of FAPE

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

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

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

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

Federal framework for student rights

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

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

What is exclusionary discipline?

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

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

Seclusion and restraint may not be used as punishment

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

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

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

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

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

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

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

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

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

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

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

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

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

Parents can request an evaluation any time

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

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

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

Manifestation Determination

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

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

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

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

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

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

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

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

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

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

A behavior support plan is best practice

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

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

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

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

A shortened school day may be a suspension

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

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

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

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

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

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

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

Alternative learning options for longer suspensions

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

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

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

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

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

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

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

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

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

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

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

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

Schools are required to support behavior and work with families

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

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

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

Here are links to OSPI’s model forms for:

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

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

Another way that an IEP can support students with behavioral disabilities is through related services. Counseling and other behavioral health supports can be written into an IEP as related services. When included in a student’s IEP as educationally necessary for FAPE, a school district is responsible to provide and fund those services. If they participate in the state’s School-Based Health Services (SBHS) program, school districts can receive reimbursement for 70 percent of the cost of behavioral health services for students who are covered by Medicaid and on an IEP.

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

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

PAVE provides resources to support families and schools:

Washington is a local control state

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

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

In general, Washington rules:

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

Schools must provide educational services during a suspension

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

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

Guidance related to isolation and restraint

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

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

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

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

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

Emergency Response Protocol (ERP)

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

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

Reporting requirements for disciplinary removal

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

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

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

Reporting requirements for isolation/restraint

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

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

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

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

Equity work in student discipline is ongoing

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

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

Steps to Read, Understand, and Develop an Initial IEP

A Brief Overview

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

Full Article

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

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

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

What is the student’s eligibility category?

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

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

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

Know what’s in the IEP before you meet

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

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

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

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

Start with the Service Matrix

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

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

Refer to the Present Levels statements

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

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

Compare Service Matrix and LRE statement

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

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

Read the list of accommodations.

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

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

Accommodations for state testing

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

Communication and Prior Written Notice (PWN)

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

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

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

Sign Consent for services to begin

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

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

Advocacy Tips for Parents

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.

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

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:

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

A Brief Overview

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

Full Article

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

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

What does behavioral health mean?

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

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

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

Who is eligible for WISe services?

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

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

Five core areas are evaluated:

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

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

WISe requires public health insurance eligibility

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

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

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

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

Who is on the WISe team?

Team members include:

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

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

WISe requires family engagement

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

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

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

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

Does my child have to agree to WISe services?

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

What if WISe isn’t enough?

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

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

History, Advocacy, and Family Support

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

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

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

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

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

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

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

Parity laws, thoughtful language, stopping stigma

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

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

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

FAPE Fits Like a Proper Outfit

Have you ever felt like your student’s Individualized Education Program—their IEP—just isn’t a good fit? This short video provides an analogy to help families and schools talk about improvements.

Here are the words that go with the video:

Imagine if the school was responsible to provide a suit of clothes for your student. The clothes must fit in size and style. Let’s pretend your child is eligible for this specially tailored suit because clothes off the rack fit so poorly that the child won’t leave home. This problem is impacting everything.

This is sort of like the school’s responsibility to provide a child who has an IEP with FAPE. FAPE stands for Free Appropriate Public Education. The services delivered through an IEP make education appropriate because they are tailored to fit the child based on their strengths and needs. FAPE is what makes school accessible for a student with a disability.

Let’s go back to pretending that the school must provide a well-fitting suit. Imagine that the school opens a closet and says, “Let’s see what we have in here.” What they pull out might be too big, too small, outrageously mismatched or in colors and patterns that make your child grimace and refuse to get dressed. They might find bits and pieces that work, but chances are high that they won’t be able to put together a whole outfit without trying a little harder and getting out the sewing machine.

That’s like the work of an IEP team—to pull out the tools everyone needs to creatively build a program that is a good fit for the student.

The school is responsible under federal law to provide eligible students with FAPE. Tailoring a program to meet individualized needs in light of the child’s circumstances is part of FAPE. If you think your school is digging around in a closet trying to find a program for your student that is ready made, you can remind them that an IEP is individually tailored to fit the student.

Our Parent Training and Information team at PAVE hopes your IEP team designs a program that outfits your child for a successful journey through education. If you’d like our support, click Get Help from PAVE’s website, wapave.org.

Feel What You Feel

When emotions overwhelm us, we sometimes react in ways that we later regret. “Name it to Tame it” is a concept from neuroscientist Dan Siegel. It means that if we identify our emotions and work with them, instead of pushing them away, we are better equipped for self-control. This simple body sensing meditation creates a way to practice emotional self-awareness and build mental muscles for emotional regulation.

For more videos about mindfulness, please go to wapave.org Thanks for watching!

Respite Offers a Break for Caregivers and Those They Support

A Brief Overview

  • Respite offers a short-term break for caregivers and those they support. This article provides information and resources to get started seeking respite services.
  • Lifespan Respite Washington, a program of PAVE, provides vouchers with up to $1,000 per qualifying household, to fund respite care.
  • Pathways to Respite, an online booklet published by several Washington agencies, provides further guidance. The guidebook defines caregiver stress and explains why breaks are critical to everyone’s well-being.
  • The ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help. The ARCH resource center also provides information and resources specific to Respite During COVID-19.
  • Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. The final section of this article includes additional military-specific resources. NOTE: There are upcoming changes to this program. See the information at the Hidden Heroes website.

Full Article

Modern families come in many styles. Primary caregivers may be parents, and they might be other relatives (kinship providers), friends, or neighbors. “Care recipient” is a term for anyone who requires assistance for daily living. “Caregiver” refers to anyone who provides regular assistance to a child or adult with a chronic or disabling conditions.

Caregivers and care recipients develop unique rhythms and relationships. Sometimes, both need to press pause and reset. Pathways to Respite, an online booklet published by several Washington agencies, provides guidance about caregiver stress:

“Putting the needs of everyone else before your own may solve an immediate stress; however, in the long-term, it can lead to increased anxiety, frustration, overwhelming feelings, resentment, depression, burnout, and even illness. Whether you think of yourself as a caregiver or not, these are all signs of caregiver stress.”

Respite offers a short-term break for caregivers and those they support. Time apart can boost well-being for all: While caregivers temporarily shift their focus to self-care, care recipients have time to meet new people and explore new interests.

Finding an appropriate respite service and organizing payment can feel challenging. This article provides guidance to simplify the steps.

Check standards and safety measures

When researching a respite agency, caregivers can assess whether the agency meets standards and is following appropriate safety measures, especially during the COVID-19 pandemic.

Lifespan Respite Washington provides a checklist with questions to consider. Here are a few examples:

  • How are the workers selected and trained?
  • Can the respite worker administer medications or assist with medical tasks?
  • If the provider will be driving the care recipient, do they have a valid driver’s license?
  • How are emergencies and problems handled?
  • What safety measures are in place to protect against COVID-19?

Registered, publicly funded respite providers are required to meet certain standards and qualifications, including background checks and training. The public agency that pays for the service is responsible to track and share information about those procedures and quality measures. If respite is paid for by private medical or long-term care insurance, providers must meet the insurance company’s standards. Caregivers can ask an insurance company representative to explain the standards and how they are upheld.

The ARCH National Respite Network and Resource Center provides a free, downloadable 17-page guidebook, ABCs of Respite: A Consumer Guide for Family Caregivers. ARCH stands for Access to Respite Care and Help. The ARCH resource center also provides information and resources specific to Respite During COVID-19.

What respite services would be most helpful?

Respite includes a broad range of services. Some organizations offer short-term, overnight stays in their facilities and some provide daytime services. Some respite services are delivered into the home, including these examples:

  • personal hygiene care
  • meal preparation
  • light housekeeping
  • companionship, activities, or supervision

Community Living Connections (CLC) provides an online assessment to help caregivers figure out what type of help they may want or need. Washington State’s CLC is part of a national collaborative that includes the U.S. Department of Health and Human Services, the Veterans Administration, and the Centers for Medicare & Medicaid Services.

Washington’s Pathways to Respite booklet includes “fill-in-the-blanks” tools to help define needs, including the following example:

“I would like to take a break, but I am concerned that___________” and “If I had some time to myself, I would _____________.”

Pathways to Respite was developed by Informing Families, a resource of the Washington State Developmental Disabilities Council, in partnership with the Washington State Developmental Disabilities Administration, Aging & Long-Term Support Administration, and PAVE, which administers Lifespan Respite WA.

Determine payment to choose a provider

If a family will pay directly for respite services, providers are easily found online. Here are some suggestions to launch a search:

  • Adult Day Services Washington State
  • After-school programs children with special health care needs Washington State
  • In-home respite care Washington State

Another way to navigate the provider system is to connect to a website managed by SEIU 775:  The Service Employees International Union is comprised of independent service providers who have a collective bargaining agreement with Washington state’s Department of Social and Health Services (DSHS).

If a care recipient is eligible for respite through private medical insurance, the insurance company will list approved providers.

Publicly funded respite programs also provide lists of registered providers. Family caregivers who have respite funding through Medicaid or the Developmental Disabilities Administration (DDA) can use CarinaCare.com, an online tool to connect individuals with providers. A Who’s Who page describes provider credentials.

Vouchers are available from Lifespan Respite WA

Lifespan Respite WA provides information about how to apply for a voucher. Vouchers are “mini-grants” for unpaid caregivers supporting a family member, friend or neighbor who has a special need or condition. The vouchers, up to $1,000 per qualifying household, can be used with any of the registered Lifespan Respite Providers

To qualify, the caregiver or care recipient cannot be enrolled in a respite or Medicaid personal care program. (Exceptions are made for persons on a waiting list and not scheduled to get respite services within 30 days of applying for a Lifespan voucher.) Additionally, a caregiver must:

  • Be unpaid
  • Provide 40 or more hours a week of care
  • Not receive respite from any other program
  • Live in Washington State
  • Be unable to afford to pay privately for respite care

Who qualifies for free or low-cost respite care?

In Washington State, eligibility for free or low-cost respite services may depend on a person’s circumstances or the category of disability.

  • Seniors and Adults with Disabilities
    • Seniors 65 and older who meet functional and financial eligibility can receive a variety of services through Home and Community Services (HCS).
    • Unpaid caregivers of adults 55 and older who meet functional and financial eligibility can receive respite care and other needed support services like caregiver education, support groups, housework and errands and other services.
  • People with Developmental Disabilities (All Ages) and Children with Disabilities
    • Children and adults with developmental disabilities who meet eligibility criteria for Developmental Disabilities Administration (DDA) may be able to receive respite, personal care, assistive technology, community engagement support, and other services provided through Home and Community-Based Services and Community First Choice (CFC).
    • Children with disabilities who are not DDA eligible may still be able to receive CFC through DDA.

How to apply:

Foster care respite

Respite care is available for foster parents licensed by the Division of Licensed Resources (DLR), a Tribal agency, or a Child Placing Agency (CPA). Unlicensed relative caregivers or those determined to be “suitable person placements” also can receive respite, as can caregivers assigned by the Department of Children, Youth, and Families (DCYF) or a Washington Tribe. 

Child Specific Respite (CSR) is linked directly to the medical, behavioral, or special needs of an individual child. CSR authorizes respite relief to families providing care to a child placed by DCYF on a case-by-case basis, consistent with the written service plan for the child.

Veterans and Military Family Caregivers

Veteran’s families may qualify for respite through the Program of Comprehensive Assistance for Family Caregivers (PCAFC), operated by the United States Department of Veterans Affairs. PCAFC offers up to 30 hours of respite: Program options, eligibility and the application process are described in a downloadable booklet published Oct. 1, 2020.

The Elizabeth Dole Foundation and the U.S. Department of Veterans Affairs offer Respite Relief for Military and Veteran Caregivers, no-cost, short-term relief with the help of in-home care professionals. See Hidden Heroes for further information.

Active-duty military and Activated Reserve or National Guard family caregivers may be eligible for respite care through TRICARE, the military healthcare system. Here are resources for military family caregivers:

  • Respite care for primary caregivers of service members injured in the line of duty can be found on the TRICARE website.
  • Extended Care Health Option (ECHO) can be a respite resource for caregivers of non-military family members.
  • Some installations have respite funding available when the care recipient is enrolled in the Exceptional Family Member Program.
  • Coast Guard family caregivers have the Special Needs Program which may offer respite or funding for respite:
  • Coast Guard Mutual Assistance has Respite Care Grants available for eligible Coast Guard clients who have responsibility 24 hours per day to care for an ill or disabled family member who lives in the same household.