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

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

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

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

Below are links to resources referenced in the video:

Behavioral Health Toolkit for Navigating Crisis, School-Based Services, Medical Services, Family Support Networks, and More

When a child struggles to maintain emotional well-being, the whole family is impacted. Parents can feel confused about where to go for help. This toolkit provides an overview of information about crisis response, school-based services, medical systems, family support networks and places to advocate for systemwide improvements. 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.

What is Behavioral Health?

Behavioral health is a broad term describing services for people with conditions based in the brain that impact their behavior. People with depression, anxiety, bipolar disorder, schizophrenia, substance use disorder (SUD), or another condition may require different levels of behavioral health help. Some developmental conditions, such as autism, may impact a person’s behavioral health. A person with more than one condition may have a “dual diagnosis.” The Child Mind Institute is a place for information about childhood symptoms, diagnoses, and options for treatment and support.

Call 988 for Suicide Prevention Lifeline

On July 16, 2022, 988 became the number to call for behavioral health crises. The national 988 network expands the Suicide Prevention Lifeline, also available by calling 800-273-8255.

In 2021, Washington passed a law (HB 1477) to rebuild the crisis response system as part of the 988 rollout. The state’s Crisis Response Improvement Strategy (CRIS) has multiple committees to encourage broad participation in the work.

Unique crisis telephone numbers for each county ultimately will be integrated with the 988 call line. The Health Care Authority (HCA) maintains a list of county crisis phone numbers on a website page titled Mental Health Crisis Lines.

Access to Youth Mobile Crisis services depends on the area in which you live. It’s best to find out what’s available before you need emergency help so you know what you can ask for. An expansion of mobile crisis is an aspect of Washington State’s 988 rollout plan.

More resources for crisis and other help are listed at the end of this article.

Plan ahead for a crisis

If you or someone you care for experiences a behavioral health condition, it’s helpful to develop a crisis plan. Make sure important phone numbers are easy to find quickly.

If calling 911 is your best option because of danger or criminal involvement, clearly state that there is a behavioral health medical crisis and request officers with Crisis Intervention Training (CIT).

TIP: Here’s how to quickly ask for behavioral health help when calling 911: “We need CIT-trained officers to respond to a behavioral health medical emergency.”

How to seek help at school

Often a child’s behavioral health needs show up in school. Students might access services through the special education system or in other ways. PAVE provides a video training called Behavioral Health and School: Key Information for Families.

The process of figuring out why a child may be acting out is called a Functional Behavioral Assessment (FBA). Information from the FBA is used to develop a Behavior Intervention Plan (BIP). PAVE provides a video called Behavior and School: How to Participate in the FBA/BIP Process. Any student whose behavior impedes learning can be assessed, not just students with special education programs already in place. To help families initiate this process, PAVE provides a Sample Letter to Request a Functional Behavioral Assessment.

Here’s more important vocabulary: MTSS stands for Multi-Tiered Systems of Support. MTSS is based on a public health approach to ensure that schools make student well-being a priority. An MTSS framework can include teaching and social-emotional supports at multiple levels, called tiers. In a school that implements the MTSS framework, adults who teach and support students are organized to respond to the academic and social-emotional needs of all students.

TIP: Ask your school about MTSS and how “tiers” (different levels) of support are organized and available to help your student. You can also ask about your school’s Social Emotional Learning (SEL) curriculum and how SEL education is provided to your student.

PAVE provides a collection of articles about Social Emotional Learning (SEL):

How to seek medical services for children and youth in Washington State

Seattle Children’s Hospital has a behavioral health 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 and provides information regardless of the child’s insurance coverage.

Wraparound with Intensive Services (WISe) is the most intensive outpatient program available for children and youth eligible for Apple Health. Here’s a link to PAVE’s article: WISe Provides Team-Based Services for Washington Youth with Severe Behavioral Health Disorders.

For children on Apple Health who need residential services, the state’s option is the Children’s Long-Term Inpatient Program (CLIP). PAVE provides an article with more information: Children’s Long-Term Inpatient Program (CLIP) Provides Residential Psychiatric Treatment.

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.

Families who want to better understand how to communicate with a loved one experiencing psychosis can seek resources from the University of Washington Spirit Lab, which operates a Psychosis REACH program to train families in using Cognitive Behavioral Therapy (CBT) to work with their loved one with a mental illness condition that includes delusions and hallucinations.

Family Initiated Treatment

In Washington State, the age for medical consent is 13. Sometimes getting a young person 13-17 into behavioral health treatment includes barriers related to the youth’s inability to see their illness or understand their need for care. Family Initiated Treatment (FIT) is an option in some circumstance. PAVE’s article provides more information about FIT and the law that authorizes it: Adolescent Health Care Act Provides Options for Families Seeking Mental Health and Substance Use Help for Young People Resistant to Treatment.

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

Families with private health insurance who believe their provider has violated parity laws related to behavioral health services can file complaints with the Office of the Insurance Commissioner or call the Consumer Hotline: 800-562-6900.

Family Support

PAVE’s article about WISe includes a section for History, Advocacy, and Family Support. In addition to PAVE, here are some family-serving agencies:

  • 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). 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.
  • 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.
  • Healthy Minds Healthy Futures is an informal network on Facebook. Advocates in the group initiated work to build the Parent Portal that WSCC (see above) is now working on with the Health Care Authority and other invested stakeholders.  

System work is underway

In 2022, the state passed HB 1890 to create a strategic plan for addressing the behavioral health needs of children, youth transitioning to adulthood, and their caregivers. That work is managed by the Children and Youth Behavioral Health Work Group (CYBHWG), created in 2016 by the Legislature (HB 2439). The CYBHWG welcomes family engagement in its activities and meetings. CYBHWG supports several advisory groups, including one for Student Behavioral Health and Suicide Prevention. Meeting schedules and reports are posted on the Health Care Authority (HCA) website. Public comment is included at every public meeting.

The needs are now

When a child or youth is struggling with a behavioral health condition, the available options don’t always meet the needs. Washington State’s 2021 Healthy Youth Survey shows that seven out of ten students in tenth grade report feeling nervous, anxious, on edge, or cannot stop worrying. Eight percent report they tried suicide within the past year. According to the Centers for Disease Control and Prevention (CDC), only about half of young people who need behavioral health services get them.

Data from the state’s Healthy Youth Survey show that students with disabilities struggle more than most. Also over-represented among students who say their mental health is a struggle 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.”

Resources for crisis help and more

Related Services in School and Beyond can Support a Child’s Development and Learning

A Brief Overview

  • At school, related services help children with disabilities benefit from their special education by providing extra help and support. Options for related services are described in state law (WAC 392-172A-01155).
  • If a child with public health insurance needs specific therapies to meet medical needs, their insurance company is obligated to support those needs. Medical necessity is described in state law (WAC 182-500-0070).
  • Sometimes a service meets educational and medical needs. In those situations, the school might bill Medicaid directly, with parent permission. Families can learn more about School-Based Health Services (SBHS) and ask if their school is participating in this optional program.
  • Washington’s Office of Superintendent of Public Instruction (OSPI) issued guidance in August 2022 to clarify that all parts of a student’s IEP begin with the start of school unless an IEP team has agreed to shift something to meet a student-centered need. Schools may not delay the start of related services for their own reasons related to scheduling or resources.
  • For federal information about the range of options for related services provided by the school, see parentcenterhub.org.

Full Article

Children with disabilities have a range of needs that may be educational, medical, or both. As they grow, develop, and learn, those needs can shift. How family, school, and medical providers respond can impact how much progress the child makes in their emerging skills. This article includes information to help families understand how therapeutic services may be provided at school or elsewhere.

What are related services?

Schools call services that lie outside the scope of traditional teaching “related services.” Another term is “ancillary services.” Related services help children with disabilities benefit from their special education by providing extra help and support.

Therapies for disabilities that impact physical movement or speech are common. Transportation provided through the special education system also is a common related service. Less common in Washington State are in-school mental health services or counseling for behavioral health conditions. Various possibilities are listed in state law (WAC 392-172A-01155). Here are examples from the Washington Administrative Code (WAC):

  • Occupational, Physical, Speech Therapies
  • Counseling
  • Psychological Services
  • Behavioral Services
  • School Social Worker
  • Special Transportation
  • Parent Training

What does parent training mean?

Notice that the final option on this list is parent training. This service might mean the school helps parents understand the special needs of their child or something about their child’s development. Through the related service of parent training, the school can teach family members to help their child practice emerging skills when they’re at home.

Who provides a related service, and who pays?

A related service may be provided by any professional who is trained to assess and/or serve a specific need for a child with a disability condition that affects their learning or development.

When therapeutic services are paid for through medical insurance, they generally must meet a standard of being “medically necessary.” Keep reading for more information about therapeutic services available through the medical system.

Services are provided at school when they are determined to be “educationally necessary.” In those cases, the school district is responsible for payment.

Sometimes a service is both medically and educationally necessary. Sometimes schools seek parent consent to bill the student’s insurance to fund all or part of a related service. Washington State’s Health Care Authority (HCA) manages a program to reimburse schools for services provided to students who are eligible for Apple Health when those services are delivered as part of their Individualized Education Program (IEP).

Tip: See HCA’s website page about School-Based Health Services (SBHS) and consider asking your school if they are participating in this optional program. The guidebook includes information about allowable services. Note that Applied Behavior Analysis (ABA) therapy is explicitly excluded as a reimbursable service through the state’s SBHS program. Most other therapeutic options are reimbursable, including a range of mental health services.

A related service might be part of evaluation

Sometimes a related service is needed to assess a student because school staff do not have the expertise to properly understand a disability condition in order to make service recommendations. “Medical services for diagnostic or evaluation purposes” are written into federal law (IDEA Section 1432) as something an IEP can provide.

Keep in mind that special education evaluations must be comprehensive, in order to identify all of a child’s special education and related service needs, not just those that relate to the IEP eligibility category.

Families can seek an Independent Educational Evaluation (IEE) if they disagree with the methods or conclusions of a school district special education evaluation. PAVE provides an article and sample letter for requesting an IEE.

Related services support FAPE

The federal law that governs special education services is the Individuals with Disabilities Education Act (IDEA). The IDEA makes clear that its list of related services (see below) includes possibilities and options but does not include every related service a student might need. Other therapeutic services might be included in the IEP if they are educationally necessary.

Access and equity are protected by various educational and civil rights laws; anything that helps a student access school-related opportunities can be included as part of a student’s services. Extracurricular activities and school-sponsored sports count.

An IEP is a written commitment for the school to serve a student’s educational needs. Educational needs might be academic, social-emotional, or something else.  They might have to do with how the student functions or adapts to the environment of school.

Educational needs are determined through a comprehensive evaluation and a collaborative process that includes family, school staff, and anyone else with knowledge of the student and their disability-related needs. If an IEP team decides that a service is necessary for the student to access their right to a Free Appropriate Public Education (FAPE), then the school district is responsible to deliver those services.

IDEA does not expressly require that the IEP team include related services personnel. However, if a particular need or related service is discussed in an IEP meeting, it would be appropriate for the provider to attend. IDEA states that, at the discretion of the parent or the public agency, “other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate” may be part of a child’s IEP team.

School-based related services might include, but are not limited to:

  • speech-language pathology and audiology services
  • interpreting services
  • psychological services
  • physical and occupational therapy
  • recreation, including therapeutic recreation
  • early identification and assessment of disabilities in children
  • counseling services, including rehabilitation counseling
  • orientation and mobility services for blindness/low vision
  • medical services for diagnostic or evaluation purposes
  • school health services and school nurse services
  • social work services in schools
  • parent counseling and training

The national Center for Parent Information and Resources (parentcenterhub.org) provides additional information about each of these possible related services and what they might look like for a student receiving them as part of an Individualized Education Program (IEP).

IEP services start on Day 1 unless the student needs something different

Washington’s Office of Superintendent of Public Instruction (OSPI) issued guidance in August 2022 to clarify that all parts of a student’s IEP begin with the start of school unless an IEP team has agreed to shift something to meet a student-centered need.

According to OSPI, “School districts are reminded that they cannot arbitrarily determine when special education and related services will begin or schedule them to begin after the start of the school year for some providers.”

OSPI’s guidance references a parent complaint and the state’s decision that schools cannot delay the start of certain services because of provider availability or district scheduling preferences. If it’s in the IEP, then the school is responsible to provide the service on all scheduled days that the student attends school. If services aren’t provided as scheduled by the IEP, then the IEP team can discuss how and when the student will receive compensatory services to make up the missed time.

Families have the right to file a complaint with the state if the school does not fully serve their student’s IEP. One option is the community complaint: PAVE provides a video describing that process. Another option is Due Process. The Procedural Safeguards describe all dispute resolution options that are free for families and protected rights under federal and state laws. 

Options for therapeutic services through the Medicaid system

If a child needs specific therapies to meet medical needs, their insurance company is obligated to support those needs. For children younger than 21 with Medicaid (Apple Health in Washington), medical necessity is determined through assessments that are a protected benefit called Early Screening and Periodic Screening, Diagnostic and Treatment (EPSDT). This screening process is overseen by the National Academy for State Health Policy (NASHP).

For help navigating complex medical issues, families can request case management from their insurance provider. Calling the number on your insurance card and asking if there a form for requesting case management is a way to begin. Sometimes a case manager is automatically assigned if claims become complex and expensive.

Medical criteria are different than school criteria. While school-based services are built to support a student’s educational access, EPSDT determinations are made to support safety and health in the home and community. Here are examples:

  • Physical Therapy (PT) at school might support adapted physical education (PE) or help the student navigate the school building or curriculum. Outside of school, PT can support navigating the home, community, recreational activities, and more.
  • Speech/language services at school are tailored to help the student achieve goals on their Individualized Education Program (IEP) or access their curriculum. Outside of school, speech/language services can expand to support communication for daily living and might be paired with Occupational Therapy (OT), for example, to work on feeding issues, sensory aversions, breathing challenges, alternative communication systems, and more.

Services to support access to school, home, and community might intertwine, and the school district might choose to bill Medicaid for reimbursement, with the family’s signed consent.

TIP: If the school is going to bill insurance, families may want to find out if the insurance company has a reimbursement limit for the service. If the child is getting a similar service in and out of school, care coordination is important to make sure all the services will be paid. Insurance may be willing to pay for more services if it’s clear which are for school-based needs and which are medical. Those details also may be important to note if services are denied and the family wants to appeal the denial through a medical or special education complaint option.

What meets the standard of medical necessity?

The Washington Administrative Code (WAC 182-500-0070) describes medical necessity. If a service is likely to prevent, diagnose, or treat an identified condition that is causing major life impacts, then it may meet the standard. The WAC says medical necessity is:

“…a term for describing requested service which is reasonably calculated to prevent, diagnose, correct, cure, alleviate or prevent worsening of conditions in the client that endanger life, or cause suffering or pain, or result in an illness or infirmity, or threaten to cause or aggravate a handicap, or cause physical deformity or malfunction.”

The same WAC goes on to say that all federally funded insurance is obligated to pay for a service if it’s the most reasonable option available to serve the need. That standard is met when:

“There is no other equally effective, more conservative or substantially less costly course of treatment available or suitable for the client requesting the service.”

The same WAC also explains that a chosen course of treatment might mean a choice to track a condition through observation or offer no treatment. The WAC says:

“For the purposes of this section, ‘course of treatment’ may include mere observation or, where appropriate, no medical treatment at all.” 

A medical specialist, therapist, or pediatrician might assess the child to determine whether a specific service is medically necessary. In some situations, a case manager from the state’s Developmental Disabilities Administration (DDA) may make the determination.

What about private insurance?

Families with insurance through an employer or the healthcare exchange will need to ask their provider for specific information about what therapeutic services are covered. A company’s human resources department is another place to ask about coverages and whether there is a choice of health plan with more allowable options. School-based services may be the only option for some, as medical parity laws do not protect all possible therapeutic services.

Here are a places to get support in understanding your health plan and navigating access to services:

Insurance denials for employer-based plans can be appealed through:

PAVE’s Family to Family (F2F) Health Information Center provides additional information and resources through it’s website, Family Voices of Washington. Click Get Help at wapave.org to request individualized support.

Behavioral Health and School: Key Information for Families

When a student struggles to maintain well-being, achievement at school can be a challenge. This video provides key information for families to seek school-based services for behavioral health needs. Included are two advocacy statements that this information might empower you to say in a meeting with the school:

  1. “I want to make sure my student’s rights are upheld.”
  2. “I’m providing information and resources to help the school follow the law and educational best practices.”

Included in the video is information about truancy and a new state law that schools must excuse absences for behavioral health reasons. Also included is information from the federal Office for Civil Rights (OCR), which provided new guidance in summer 2022 about school responsibility to help instead of discipline students with behavioral health needs.  

PAVE staff cannot provide advocacy or advice. We share information to empower family members and young people who do have legal advocacy rights. You can learn this information and keep in handy when you aren’t sure whether the school is following the law or educational best practices. Please be patient with yourself while you are learning this information. It can feel like a lot! As you learn a little bit at a time, you can see how your increasing knowledge shifts options and outcomes for your student.

Here are resources from this training, listed in video order:

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.”

Mental Health Education and Support at School can be Critical

A Brief Overview

  • Alarming statistics indicate the pandemic worsened many behavioral health outcomes for young people. Governor Jay Inslee on March 14, 2021, issued an emergency proclamation declaring children’s mental health to be in crisis.
  • President Joe Biden issued a Fact Sheet about the nation’s mental health crisis on March 1, 2022, as part of his State of the Union message. This article includes some of what the president shared about youth impacts.
  • Washington State’s 2021 Healthy Youth Survey confirms that children and youth are struggling to maintain well-being.
  • These outcomes make adolescence a critical time for mental health promotion, early identification and intervention. Read on for information and resources.
  • The emotional well-being of students may be served through Multi-Tiered Systems of Support (MTSS), which provide a structure for schools to provide education and supports related to student well-being schoolwide.
  • Students with high levels of need may access mental health support through the special education system. Emotional Disturbance is a federal category of disability under the Individuals with Disabilities Education Act (IDEA).

Full Article

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

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

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

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

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

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

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

Mental Health support to students is a statewide priority

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

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

TIP: Family caregivers can get involved in advocacy work!

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

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

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

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

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

Special Education is one pathway for more help

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

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

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

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

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

Behavioral health counseling can be part of an IEP

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

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

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

Placement options for students who struggle with behavior

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

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

Sometimes the IEP team, which includes family, will determine that in order to receive FAPE a student needs to be placed in a Day Treatment or Residential school. OSPI maintains a list of Non-Public Agencies that districts might pay to support the educational needs of a student. Districts may also consider schools that are not listed. Washington State has almost no residential options for students. Schools almost always send students to other states when residential placement is needed.

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

Residential placement may be necessary because educational needs cannot be served unless medical needs are fully supported. School districts may be responsible in those situations to pay for a residential placement. A precedent-setting court ruling in 2017 was Edmonds v. A.T. The parents of a student with behavioral disabilities filed due process against the Edmonds School District for reimbursement of residential education. The administrative law judge ruled that the district must pay for the residential services because “students cannot be separated from their disabilities.”

Strategies and safety measures for families and teachers

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

Hopeful students:

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

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

A 2018 handout includes tips for parents and other adults who support teens who feel anxious or depressed:

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

A press for school-based services and mental health literacy

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

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

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

Goals of mental health literacy are:

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

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

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

  • Suicide Prevention Lifeline (1-800-273-TALK): After July 16, 2022, call 988
  • Text “HEAL” to 741741 to reach a trained Crisis Text Line counselor
  • Trevor Project Lifeline (LGBTQ) (1-866-488-7386)
  • The Washington Recovery Help Line (1-866-789-1511)
  • TeenLink (1-866-833-6546; 6pm-10pm PST)
  • Seattle Children’s Hospital has a referral helpline. Families can call 833-303-5437, Monday-Friday, 8-5, to connect with a referral specialist. The service is free for families statewide

Further information on mental health and suicide:  

Family Support

  • PAVE’s Family-to-Family Health Information Center provides technical assistance to families navigating health systems related to disability. Click Get Help at wapave.org or call 800-572-7368 for individualized assistance. Family Voices of Washington provides further information and resources.
  • A Facebook group called Healthy Minds Healthy Futures provides a place to connect with other families.
  • Family caregivers can request support and training from COPE (Center of Parent Excellence), which offers support group meetings and direct help from lead parent support specialists as part of a statewide program called A Common Voice.
  • Washington State Community Connectors (WSCC) sponsors an annual family training weekend, manages an SUD Family Navigator training, and offers ways for families to share their experiences and support one another. With passage of HB 1800 in 2022, WSCC is working with the Health Care Authority to build a statewide website to help families navigate behavioral health services.
  • Family, Youth, and System Partner Round Table (FYSPRT) is a statewide hub for family networking and emotional support. Some regions have distinct groups for young people.

Sample Letter to Request a Functional Behavioral Assessment

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

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

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

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

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

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

Manifestation Determination

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

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

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

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

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

Request FBA formally, in writing

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

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

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

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

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

The FBA/BIP might prevent a shortened school day

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

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

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

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

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

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

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

Sample letter to request an FBA

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

Your Name
Street Address
City, State, Zip
Date

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

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

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

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

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

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

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

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

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

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

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

Sincerely,

Your Name

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

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

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

Supported Decision Making is an Option for Adults with Disabilities

A Brief Overview

  • In Washington State, Supported Decision Making (SDM) is a legal option for supporting a person with a disability after their 18th birthday.
  • The format for an SDM agreement is up to the individual and their supporters. A sample form is available for download from WashingtonLawHelp.org.
  • The final section of this article provides information about other options to support and protect a loved one with a disability.
  • Help is available from the Developmental Disabilities Ombuds.

Full Article

When a young person turns 18, most decisions are now up to them. In Washington State, age 18 is the “age of majority,” which means a person 18 or older has the right to make their own decisions about education, work, money matters, voting and more.

Note: In Washington the age of independence for health care decisions is 13, with some behavioral healthcare exceptions related to Family Initiated Treatment (FIT).

When a person 18 or older has a disability, family members may want to stay involved in helping them make decisions. Supported Decision Making (SDM) is the formal name for one legal option.

Washington law (Chapter 11.130 in the Revised Code of Washington) includes Supported Decision Making as an option under the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act. The law changed in 2020 when the state passed Senate Bill 6287. The changes took effect Jan. 1, 2022.

The law includes Supported Decision Making as an alternative to more restrictive arrangements that put limits on an individual’s rights. The final section of this article includes information about other options, such as guardianship.

What is Supported Decision Making?

Supported Decision Making (SDM) is an agreement to make sure an adult with disabilities has trusted helpers watching out for their well-being. An SDM agreement does not remove the adult individual’s rights but creates a way for the individual and their supporters to make choices together.

For example, a student older than 18 who receives special education services at school might agree to have their parent continue to participate in decisions about their Individualized Education Program (IEP). Parent and student then work together as members of the IEP team.

Supported Decision Making may be combined with a Person Centered Plan to ensure that a person has circles of support as they work toward adult life goals. Like Person Centered Planning, SDM changes with the needs of the individual and their supporters.

What should be included in the agreement?

An agreement for Supported Decision Making is written to meet an individual’s needs and preferences. For example, a person might choose support in one or more of these areas:

  • Medical care
  • Dating or sexual intimacy
  • Living arrangements
  • Employment
  • Education
  • Finances

The agreement includes the names of supporters and their relationship to the person. Supporters might be:

  • Parent
  • Other family member
  • Friend
  • Trusted professional
  • Someone else

The agreement is signed in front of a Notary Public by the adult with disabilities and all selected supporters. Everyone must provide picture identification for an in person signing or follow alternative identity verification methods for an online signing.

How to document their SDM agreement is up to the individual and their supporters. A sample form is available for download from WashingtonLawHelp.org. The sample form offers the following suggested language:

“My supporter is not allowed to make decisions for me. To help me with my decisions, my supporter may:

Help me access, collect, or obtain information that is relevant to a decision, including medical, psychological, financial, educational, or treatment records;

Help me understand my options so I can make an informed decision; and

Help me communicate my decision to appropriate persons.”

The suggested format includes options for the individual to choose whether selected supporters will have access to protected health information under the Health Insurance Portability and Accountability Act (HIPAA) or educational records under the Family Educational Rights and Privacy Act (FERPA).

Is Supported Decision Making free?

There may a small cost to get a document signed in front of a Notary Public.

TIP: If someone on the agreement has a bank account, their bank may provide free Notary services. Public libraries and county courthouses are additional places to ask about free options to have a document notarized.

The SDM agreement does not have to be filed with a court, but it is a legal agreement.

Resources for Supported Decision Making

What if my family wants another choice for support and protection?

Supported Decision Making is one option when a family wants to support and protect a loved one with a disability. Below are options that may involve legal assistance and/or a court process. Washington Courts provides information about various types of courts and how to find them within the state.

Guardianship of an Adult: A court-appointed person makes decisions for the adult with disabilities. Guardianship may be combined with Conservatorship (see below). Guardianship is the most restrictive option and may not be granted unless there is evidence that less restrictive alternatives are unworkable.

Conservatorship of an Adult: A court-appointed person makes property and/or financial decision for the adult with disabilities. Like guardianship, the petition may be denied if less restrictive options are not tried first.

Informed Consent: This is a limited option for supporting medical decisions when a health care provider determines that an individual is unable to properly understand their condition or make fully informed decisions (RCW 7.70.065). Note that an individual with a Supported Decision Making (SDM) agreement may be able to demonstrate they can make their own decisions about healthcare with the help of their supporter.

Power of Attorney: An individual can sign a legal document to give someone else power to make decisions in their behalf under limited or general circumstances. A Mental Health Advance Directive, to be invoked if someone with a mental illness loses capacity, is an example of a limited Power of Attorney document that an individual might choose to sign. Washington Law Help provides a Q and A on Powers of Attorney.

Special Needs Trust: An account can protect funds for individuals receiving Supplemental Security Income (SSI) and/or Medicaid. A Trustee is appointed to manage the funds, which commonly are used to pay for things that SSI or Medicaid benefits do not cover. Trustees are legally responsible if they do not use the Trust for the benefit of the individual. Washington Law Help provides information on Special Needs Trusts.

Representative Payee: The Social Security Administration (SSA) may determine that an individual receiving benefits needs a payee to manage their income. If an individual disagrees with the administration’s decision to appoint a payee, they must present evidence of their ability to manage their money. Disability Rights Washington (DRW) provides information about how to change, remove or report a representative payee.

Protective Arrangement: A court-appointment person makes decisions for the person with disabilities related to specific and limited conditions, such as specific medical decisions or contact with a specific individual who might cause harm. The Vulnerable Adult Protection Act provides protection to adults in Washington State who meet one or more of these criteria:

  • 60 or older and functionally, mentally, or physically unable to care for themselves
  • Have a court-appointed guardian
  • Have a developmental disability
  • Live in a nursing, adult family, or boarding home or other facility
  • Served by home health, hospice, or home care agencies
  • Receive services from an individual care provider or personal aide

NOTE: Anyone who suspects physical harm, someone being held against their will, sexual abuse, neglect, financial exploitation, or abandonment can call Adult Protective Services: 1-877-734-6377 or Report Online.

Additional Resources

Legal Disclaimer: It is the policy of PAVE to provide support, information, and training for families, professionals, and interested others on a number of topics. In no way do these activities constitute providing legal advice. PAVE is not a legal firm or a legal services agency and cannot provide legal advice. The information within this article is not intended as legal advice and should not be used as a substitution for legal advice.

How to Navigate School for Youth with Mental Health Concerns

Staff from PAVE’s Parent Training and Information (PTI) program provided a workshop as part of the statewide virtual conference hosted by NAMI Washington October 16, 2021.

This recorded training provides a general overview of student rights in education. Some information is specific to students impacted by mental health conditions.

The formal content begins about four minutes into the video and ends at about 46 minutes.

Here are a few examples of topics addressed:

  • Does my student have the right to be evaluated for special education if they refuse to go to school because of anxiety?
  • What accommodations are reasonable to ask for?
  • What services might be possible for my student who struggles with emotional regulation?
  • Can counseling be a related service?
  • Are there protections for a student because of suicidal thoughts or attempts?
  • What support is available for a student with a disability condition who isn’t prepared for adulthood because high school got interrupted by the pandemic?

Additional information about mental health education and services at school, the overall layout of youth behavioral health in Washington State, and where to find family support is included in a PAVE article: Mental Health Education and Support at School can be Critical.

To seek education, training, and support from the National Alliance on Mental illness, look for a virtual training or information about a local affiliate near you, listed on the NAMI WA website.

One place to access behavioral health services for children and youth anywhere in Washington is through the Seattle Children’s Hospital Mental Health Referral Service: 833-303-5437, Monday-Friday, 8 a.m. to 5 p.m.

Families and young people can reach out for individualized assistance from PAVE’s Parent Training and Information (PTI) staff at PAVE. Click Get Help or call 800-572-7368.

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Webinars offer Parent Training to Support Behavior during Continuous Learning

While school facilities are closed because of COVID-19, families impacted by disability face complex challenges. For some, children’s difficult behaviors are a regular concern. According to the Centers for Disease Control and Prevention (CDC), stress and anxiety in children and youth may show up through unexpected or maladaptive behaviors. Those behaviors might get worse because of fear, isolation, and disrupted lives.

Meanwhile, some of the help that used to be there is gone. At school, students may have gotten 1:1 support or direct instruction to encourage behavioral skill-building. Those aspects of a special education program might be difficult or impossible to provide during social distancing.

While students are learning from home, parents can request individualized support from the school to support behavioral expectations, if behaviors have educational impact. Parent training can be a related service in a student’s Individualized Education Program (IEP). As always, family caregivers can request an IEP meeting to discuss options to support academic and behavioral goals and expectations.

If the student has a Behavioral Intervention Plan (BIP), that document might hold clues about strategies most likely to work. For more ideas about how to communicate with the school in reviewing a student’s program and perhaps also designing a temporary Continuous Learning Plan, parents can refer to PAVE’s article: IEP on Pause? How to Support Continuous Learning with School Buildings Closed.

To generally support caregivers in their various roles during COVID-19, Washington’s Office of Superintendent of Public Instruction (OSPI) offers a three-part webinar designed for families to help with behavior in continuous learning environments. The webinar has been recorded and uploaded to YouTube in sections, so families can access the content at their own pace.

The webinars are moderated by Lee Collyer, OSPI’s program supervisor for special education and student support. Collyer, a parent, describes his own challenges during the pandemic alongside ideas from research-based sources. Families are invited to send questions and comments to lee.collyer@k12.wa.us.

In various forums, Collyer has described his investment in fostering positive behavioral supports for students in order to reduce disciplinary actions. In a May 13, 2020, OSPI webinar about Mental Health and Safety, Collyer said, “My fear is that we’re going to try to discipline our way out of trauma.”

Following is a brief description of each segment of the three-part webinar series, with a link to each specific webinar. If you start with the first one, you will have the option to stay connected and flow through all three. Each segment is 20-25 minutes long, and the first one includes some background information about OSPI and Collyer’s role.

Supporting Positive Behavior in Continuous Learning Environments – Part One

Collyer begins the series by sharing OSPI’s official statements related to mission, vision and equity. He offers reassurance to parents that everyone is learning something brand new together, without time for proper training, and that “We should not let pressure from schools, teachers or school communities dictate what works for our family and what kind of learning we are prioritizing during this time.”

Collyer talks about the value of learning that is imbedded in everyday activities and part of family routines. He shares insights from psychiatrist Bruce Perry and psychologist Ross Greene, both widely regarded authors who apply their research to inform parents. Their names are linked here to practical articles about supporting positive behavior, and both are easily searchable to find additional materials.

The OSPI webinar includes signs of stress and anxiety to consider. Collyer recommends behavior solutions based on skill building: If children do not know how to do something (like behave), the answer is to teach, he points out, not punish. The segment ends by explaining how behavior serves a function and understanding that function is key to reducing escalations.

Supporting Positive Behavior in Continuous Learning Environments – Part Two

The second segment begins where the first leaves off, by discussing the functions of behavior and how to identify them and intervene early. Pre-teaching skills and reinforcing positive behaviors over negative ones in a 5:1 ratio is encouraged: For the best outcome, catch a child doing what is expected and provide encouragement five times more often than calling out an unexpected behavior.

The second segment also provides some specific strategies for home/school communications. Collyer describes the difference between a consequence and problem-solving and offers specific strategies for parent/child problem-solving.

Supporting Positive Behavior in Continuous Learning Environments – Part Three

The third segment begins with information about how a crisis might escalate and how reason and logic are compromised when fear and frustration highjack a person’s response system. Adults may need to consider their own escalation cycles and develop a personal plan for self-control to support children, Collyer says.

He describes how children might be uneven in their development of cognitive versus social-emotional skills and how that might create confusion about the best parenting strategy. How to set limits with considerations for trauma and ways to shift from negative to positive interventions are additional strategies provided in the final segment of this webinar series.

For additional resources from OSPI, visit the page for Special Education Guidance for COVID-19.

 

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

A Brief Overview

  • The Adolescent Behavioral Health Care Access Act, passed into law by the Washington Legislature in 2019, gives parents and providers more leverage in treating a young person who won’t or can’t independently seek medical help for mental illness and/or substance use disorder.
  • The Washington State Health Care Authority (HCA) in March 2020 launched several website links with information about the new law, which includes an option for Family Initiated Treatment (FIT).
  • The Washington State Hospital Association on July 9, 2019, provided a slide presentation describing the law’s history and its primary features.
  • A place to connect with other families concerned about adolescent mental healthcare access in Washington State is a group called Youth Behavioral Healthcare Advocates (YBHA-WA) on Facebook. Included on the page are handouts that summarize key aspects of the new law. 

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 agency’s 2020 rankings list Washington in the 43rd position, based on various measures that indicate a higher prevalence of mental illness and lower rates of access to care.

Often a barrier to treatment is the youth, who may not be able to see a problem or want to get professional help. Parents often struggle to navigate systems that must balance a young person’s autonomy with concern that they may not be able to make good decisions because of their development, specific illness circumstances or symptoms that impact the brain.

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 mental health or substance use treatment, regardless of whether parents and providers agreed that such treatment was necessary to protect the safety and well-being of the adolescent.

A law passed by the Washington legislature in 2019 gives parents and providers more leverage when a young person is struggling with a mental illness or substance use disorder and won’t independently engage with treatment. The law does not limit an adolescent’s ability to initiate treatment on their own.

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.”

The Adolescent Behavioral Health Care Access Act enables parents/caregivers to bring a child for inpatient or outpatient treatment without requiring consent from the child, ages 13-17. The law includes elements introduced by the state Senate and House of Representatives, which originally titled the bill as HB 1874.

Passage of the law was a win for the Children’s Mental Health Work Group, which studied and reviewed recommendations from a stakeholder advisory group authorized by the 2018 legislature. The final version of the law included input from family members, youth, clinicians, hospital staff and many others who met dozens of times. A June 13, 2019, slide presentation available online provides additional history and detail about the work group and its recommendations: Family Initiated Treatment and Engaging Families in Treatment of Youth. The webinar with sound is available on YouTube.

The 2020 legislature is considering amendments to the law, and the Children’s Mental Health Work Group continues to meet to consider proposals to clarify provisions that relate to residential treatment and referrals for Wraparound with Intensive Services (WISe).

“Parent” is broadly defined

The 2019 law expands the definition of parent 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. 

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.

A substantive change with the 2019 law is that providers may share mental health 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.

How Family-Initiated Treatment Works

If a parent/caregiver believes that an adolescent requires mental health or substance use disorder treatment, the adult can escort the young person to an inpatient or outpatient treatment facility even if the adolescent doesn’t readily agree to go.

A provider will assess the adolescent and consider information from the family to determine whether treatment is medically necessary. An adolescent’s refusal to engage with the provider cannot be the sole basis for refusing to treat.

An inpatient facility can detain the adolescent under Family-Initiated Treatment (FIT) if medically necessary. Note: another option could be detention under the Involuntary Treatment Act (ITA), if the adolescent is determined to be gravely disabled or at imminent risk of self-harm or harm to others.

If medical necessity is found by an outpatient provider, a counselor 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.

State laws continue to encourage autonomy for young people, but family engagement is encouraged. 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.”

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, 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

Information about state laws related to Behavioral Health Services for Minors is available through the Washington State Legislature website under RCW 71.34.

Information about child and youth behavioral health services in Washington State is available from the Health Care Authority (HCA).

Families and Youth Have a Voice on Mental Health Matters Through FYSPRT

A Brief Overview

  • FYSPRT (pronounced fiss-burt) is a hard acronym to learn, but it’s worth the effort for families and young people who want to talk about improving mental healthcare systems.
  • Here’s what FYSPRT means: Family members, Youth and System Partners (professionals) get together at a “Round Table” (meaning everyone has an equal voice) to talk about issues related to emotional distress, mental illness and/or substance-use disorder. All participants share ideas about what helps and what could make things better.
  • The Washington State Health Care Authority (HCA) provides a map of the 10 FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.
  • FYSPRT began after a class-action lawsuit against the state, TR v Dreyfus. The litigation resulted in development of the state’s out-patient mental-health services program for youth—Wraparound with Intensive Services (WISe).
  • FYSPRT is a place where families provide feedback about WISe, but all community members are welcome—regardless of age or agency affiliation.
  • Some regional FYSPRTs sponsor separate meetings and social events for youth.

Full Article

Parents and young people who struggle with emotional distress, mental illness and/or substance-use disorder can feel powerless to affect change in a complicated medical system. The Family, Youth and System Partner Round Table (FYSPRT) provides a meeting space for family members and professionals to talk about what’s working and what isn’t working in mental healthcare. The groups also provide informal networking and can provide ways for families to meet up and support one another under challenging circumstances.

The state sponsors 10 FYSPRT groups to serve every county: A list of the groups and which counties they serve is included at the end of this article. Each group reports to a statewide FYSPRT, which provides information to state government to influence policy. The Washington State Health Care Authority (HCA) provides a map of the FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.

FYSPRT began as part of a class-action lawsuit against the state, referred to as TR v Dreyfus. The litigation began in 2009, and settlements were mediated in 2012-13. The federal court found that Washington wasn’t providing adequate mental-health services to youth and required that the state start delivering intensive community-based mental-health treatment. The state responded by developing the Wraparound with Intensive Services (WISe) program for youth under 21 who are eligible for Medicaid. WISe teams provide a wide range of therapies and supports with a goal to keep the young person out of the hospital, which costs more and can be traumatizing.

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

To provide accountability for the delivery of WISe services, the state created FYSPRT as a forum for families to provide feedback about how the program is working. The mission is to provide an equal platform for everyone within the community to strengthen resources and create new approaches to address behavioral needs of children and youth.

 

FYSPRT provides a space where youth impacted by behavioral health issues and their family members can share ideas about what works well and what would work better. The FYSPRT model is based on the belief that everyone’s unique perspective is equally important, and everyone is invited. For many parents and youth, FYSPRT becomes a place to bond and connect to support one another. Some regional FYSPRTs include separate meetings for youth, and those groups can become a key social outlet.

 

FYSPRT meetings are open to all interested community members. Each community has unique participants depending on what agencies work in the cities and towns within the region.

Staff who serve families through WISe are key participants. Other attendees are case managers from the state’s Medicaid-provider agencies, behavioral health counselors, foster-care workers, staff of homeless programs and staff and volunteers from affiliates of the National Alliance on Mental Illness (NAMI). Other participants are leaders of support groups for youth in recovery or working with issues related to gender identity or sexuality. PAVE staff are regular attendees in many regions, and PAVE manages the Salish FYSPRT program.

Every area of the state of Washington has its own FYSPRT, overseen by the Health Care Authority.  Each of the ten FYSPRT regions is comprised of a single county or up to eight adjoining counties. In order to create greater participation from the general public, transportation and childcare stipends are available for families and youth in most areas. Some groups provide free meals for everyone and/or gift card incentives for the families and young people who attend.

Here are links to each regional FYSPRT’s website and a list of the counties each represents:

Great Rivers Regional FYSPRT – Cowlitz, Grays Harbor, Lewis, Pacific

HI-FYVE – Pierce

King County’s Family Youth Council – King

North Central Washington FYSPRT – Chelan, Douglas, Grant, Okanogan

North Sound Youth and Family Coalition – Island, San Juan, Snohomish, Skagit, Whatcom

Northeast FYSPRT – Adams, Ferry, Lincoln, Pend Oreille, Spokane, Stevens

Salish FYSPRT – Clallam, Jefferson, Kitsap

Southeast FYSPRT – Asotin, Benton, Columbia, Franklin, Garfield, Kittitas, Whitman, Yakima

Southwest FYSPRT – Clark, Klickitat, Skamania

System of Care Partnership – Mason, Thurston

Transition from Child Based to Adult Based Services in Behavioral Health

From Child to Adult

Transition to adulthood is difficult for all young adults, but if you are a young adult who utilizes Behavioral Health or Substance Use Disorder services it can be confusing and overwhelming. It is also difficult for the parents and guardians who support them. Moving from child based to adult based services takes some preparation to make it easier and it ideally should start a year or more before the shift. Depending on the intensity of need and the way that the disorder is affecting the young adult’s decision making skills, it can be helpful for you, as the guardian, to check and see if your youth’s current providers have transition support.

  • If transition planning is not available, you can go and visit companion adult based service providers to get information on how their system of support works. You can also ask how to find a new provider.
  • If this is a young adult on Medicaid, the regional Behavioral Health Organization should have contact information and locations for these providers.
  • If you are under private pay or employer based insurance, you will need to reach out to your youth’s current behavior health provider and/or therapist to see if they have some recommendations or can do a transition plan of care.
  • If you go to two different providers for therapy and medication management you will need to connect with both.

Behavioral health and substance use disorder privacy laws have some very strict rules in place around shared information concerning the youth’s treatment plan, and if you are not a part of a wraparound or WISe program, you may have a more difficult time with providers responding to your inquiries. Ask for generalized information that can be applied to anyone about how the system works. This keeps it from being about a specific person and makes it easier for behavioral health professionals to share their processes with you.

The young adult accessing these services may want to participate in this process themselves. This can allow you to be a side-by-side support and they can give permission for you to be with them as they explore. Understand that once they are shifted to adult services, unless you have guardianship or they are determined to be incompetent or a danger to themselves or others, you will no longer have any decision-making power. Doing ground work ahead of time allows for a smoother transition and helps them maintain care longer.

Things to look at when planning for transition:

  • Wait times to see the provider.
  • Is there medication management out of the same office?
  • Do they have an adult based wraparound type system?
  • How accessible is the building and is it on a bus or transit line?
  • Does the adult provider have a relationship with the current provider?
  • Who is another trusted support person if your young adult no longer wishes you as a parent or guardian to be involved?
  • What community supports need to be in place to for your young adult to be successful (smart phone apps, state community living supports like food stamps, SSI, disability bus pass, etc.)?

The key to prepping is creating a communication pathway ahead of time so that you can support your young adult as they transition. In the Behavioral Health System, at age 13 youth can demand that they make their own decisions in their care. This means starting at age 11 or 12 can help them in making smarter choices where their own care is concerned. Working to become a trusted support for both the therapists and your youth, as well as starting the conversations early, makes all the difference in the world.

World Psychiatry

US National Library of Medicine

Mental Health Services for Young People

Transition Between Child and Adolescent Mental Health 

Developmental Screening (Birth to Three and Medically needed developmental screening)

What is Developmental Screening?

Developmental screening is the practice of systematically looking for and monitoring signs that a young child may be delayed in one or more areas of development. Screening is not meant to establish a diagnosis for the child, but rather to help professionals and families determine whether more in-depth assessment is the next step. By using a high-quality screening tool, professionals can screen children for delays accurately and cost-effectively.

Think about your child’s first months. The medical professionals set up regular “Well-child” appointments just to monitor how your child is doing.  These “Well-child” visits allow doctors and nurses to have regular contact with children to keep track of the child’s health and development through periodic developmental screening. Developmental screening is a simple process that can have both informal and formal assessments. When using a tool that is more formal in nature, the short test can tell if a child is learning basic skills when he or she should, or if there are delays. Developmental screening can be done by other professionals in health care, community, or school settings.

We have heard many times over the years that a child’s greatest window for development is in the first five years of life. Eighty-five percent of the brain’s development occurs before age three, making the first years of life critical to a child’s future success. The research shows that early intervention greatly improves a child’s developmental and social skills. Early intervention services help children from birth through 3 years of ages. Services usually include the support of an early educator who works with the family, as well as therapy (if identified as a need) to help the child talk, walk, and interact with others.

It’s not uncommon for parents to become concerned when their little one doesn’t seem to be developing within the normal schedule of “baby” milestones. You may worry that he hasn’t rolled over yet, or that he isn’t doing what the neighbor’s child, who is about the same age is doing. There may be concerns about your baby sitting up or beginning to verbalize words and sounds.

While it’s true that children develop differently, at their own pace, and that the range of what’s “normal” development is quite broad, it’s hard not to worry and wonder. If you think that your child is not developing at the same pace or in the same way as most children his or her age, it is often a good idea to talk to your child’s pediatrician. Explain your concerns. Tell the doctor what you have observed with your child. The doctor or other professionals might ask you some questions they may also talk and play with your child to see how he or she plays, learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.

You can also get in touch with your community’s lead agency for birth-to-three services, and ask for an evaluation to see if there are possible delays. Based on referrals from the Doctor and the evaluation provided by the early intervention team, your child may be eligible for early intervention services, which will be developed with you and will address your child’s special needs.

Screening is a simple process that can identify infants and young children who may be at risk for health, developmental, or social/emotional problems. It identifies children who may need a health assessment, diagnostic assessment, or educational evaluation. “Screening” means using a standardized instrument. This could include a parent questionnaire, observational process, or other form of measurement that has been validated by research to learn more about the child’s development. Using a standardized instrument is much more effective for identifying real concerns or delays than just using professional judgment or informal questions about the child’s development.

The screening process provides an opportunity for young children and their families to access a wide variety of services and early childhood programs. It also supports the parents’ understanding of their child’s health, development, and learning.

The developmental screening and evaluations can lead to the involvement of a Family Resource Coordinator who will walk with the family through those first three years. They do a family needs assessment, if the family wishes to have one done. This helps identify areas the needs and priorities of the child’s family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance the child’s development.

The need to provide early intervention is significant. Many children with developmental delays are not being identified as early as possible. This can result in these children waiting to get the help they need to do well in social and educational settings until they are in a school or pre-school setting. Research has shown that in nearly one in six Washington kids has a developmental delay, but only 30% of these children are identified before starting kindergarten, when early support services are most effective. Additionally, research has also identified that in the United States, about 13% of children 3 to 17 years of age have developmental or behavioral disabilities. These can include autism, intellectual disabilities, and attention-deficit/hyperactivity disorder. Additionally, there are children who have delays in language, social skills, or other areas that affect school readiness. This same research found that many children with developmental disabilities weren’t identified before age 10. These types of delays have significant implications since by that age there are significant delays that might have been addressed earlier and provided opportunities for services and support that was missed.

Because of the rapid growth in a child’s first three years of life, early support and monitoring of child development is essential for these children to reach their full academic potential as well as social and personal success. In all cases, kids will experience greater success academically, socially, and personally if delays are caught early and kids and families get the support they need. Free developmental screening using the Ages and Stages Questionnaire-3 screening tool is one of the best ways to get more awareness of what can help your child. In addition to the Ages and Stages survey a terrific tool and support network has been established called “Within Reach”. The “WithinReach” website is committed to supporting optimal child development of all Washington families. Through the “WithinReach” Family Health Hotlineand Child Development program, families can access free developmental screening, connections to early learning and family support and referrals to early intervention for developmental delays.

If you would like a free developmental screening for your child or have concerns about your child’s development, it is as easy as calling their Family Health Hotline (800) 322-2588 or visiting their website at www.ParentHelp123.org.

Remember that as important as Developmental screening is as a part of early intervention, can go also be important in assuring that the needs of children of older ages also find success and resources. Developmental screening for older youth can include areas of the individual’s development in mental health, social and emotional needs, and communication needs, just to name a few. Developmental screening will help assure that the needs of the individual whether an infant or an older child, can be met, and how those needs can be met. As parents and family members we have a responsibility to help our children thrive and developmental screening can help us know which path to follow to make that happen.

Resources for this article:

http://www.cdc.gov/ncbddd/childdevelopment/screening.html

http://www.parentcenterhub.org/repository/ei-overview/

http://www.health.state.mn.us/divs/cfh/topic/devscreening/screening.cfm

http://agesandstages.com/research-results/why-screening-matters/developmental-screening/

http://www.cdc.gov/ncbddd/autism/index.htm

http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/intellectualdisability.pdf

http://www.cdc.gov/ncbddd/autism/index.htm

http://agesandstages.com/

http://www.withinreachwa.org/what-we-do/healthy-families/child-development/

http://www.cdc.gov/ncbddd/childdevelopment/screening.html#references

 

What is a Medical Home?

A medical home is a partnership between you and your child’s doctor that makes sure your child is getting the best possible care.

It is not an actual place or building you can go to. The word home means that you have a “home base” for your child’s health care needs.  The medical home concept has been growing more and more in the last few years and creates a coordination “team” around the medical needs of your child.

The place where you usually take your child for health care can be your child’s medical home.  Medical homes don’t happen right away and don’t always look the same. No matter who provides coordination a medical home provides support for your child and help for you as the parent or guardian in the coordination of care. If you would like to work on creating a medical home for your child often the first place to start is with your child’s primary care physician to see if they are familiar with how to coordinate care around your child. Some families have medical homes built through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.

When choosing a provider to help you create a medical home here are some tips to consider:

  • Their willingness to negotiate and respect your input and decisions
  • That your child’s best interest is at the heart of their care and that the family’s dynamics are taken into consideration when a care plan is put into place
  • Your provider has at least some experience with your child’s condition. The relationship of the provider with your child is the most important element.
  • Open communication so that you and your doctor can make decisions together and that you are recognized as the expert on your own child’s care

It is important that the provider you consider also work well with the other members of your child’s care team and that they are willing to communicate and share information. You and your child’s providers should make decisions together calmly and information should be shared with all members of the team. A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.

When working with a provider understand that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers. Asking questions and letting your provider know that you don’t understand their decision or don’t agree with their decision can be done respectfully and can help to build a strong line of communication if it is done with respect. You are the driver of your team so it helps to come from a place of respect.

It also helps to respect the time utilized in appointments as well. Be sure and let the office know ahead of time if you need more time in an appointment and write out your questions and concerns ahead of time. If you have a teenager or young adult start having them write out their questions and needs as well so that they become a part of the team in managing their own care.

I know it seems like a lot of work but there are a great deal of reasons why a medical home is of benefit. Some of these reasons include:

  • Help in the early identification of special health care needs
  • Provides ongoing primary care
  • Ongoing coordination with a broad range of other specialty services
  • Your child’s doctor can help you find more medical services for your child
  • More cost effective
  • Your doctor will get to know your child’s needs better
  • Your child will get better healthcare because you and your doctor have a partnership
  • Information is shared between you and your child’s doctors
  • You and your child’s providers can build a relationship
  • Fewer visits to the emergency room and hospital when problems are found more quickly
  • Lower long-term health care costs

Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future. Bringing a trusted medical provider into that circle to help with the coordination and care of your child frees you, as a family, to look beyond the need to juggle the many complex issues of caring for a child with special healthcare needs. A medical home can spread the burden of coordination and decision making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in beginning.

There are some great web resources around establishing a medical home both at national and state sites and you can access them below.

American Academy of Pediatrics

Bright Futures

Washington State Medical Home

Medical Homes Checklist

  1. You are valued and acknowledged as the expert on your child.
  2. You are the central member of your child’s health care team.
  3. There is respect and trust between you and your child’s Doctor.
  4. Your culture and religion are valued.
  5. Your doctor shows effort and interest in learning about your child’s healthcare and other needs
  6. Your child receives his or her shots, well child visits and urgent care (when needed).
  7. You receive help and support when finding specialty care and community services.
  8. Your child’s doctor provides helpful information to other people involved in your child’s healthcare and helps you manage your child’s care.
  9. If your child has special healthcare need you feel supported.
  10. You are given helpful information to help you learn about your child’s health care concerns
  11. Your doctor helps you understand the choices for your child’s treatment.