Tag: family support

Self-Care is Critical for Caregivers with Unique Challenges

Posted on by Nicol Walsh
  • Self-care is not selfish. Self-care is any activity or strategy that helps you survive and thrive in your life. Without regular self-care, it can become impossible to keep up with work, support and care for others, and manage daily activities.
  • PAVE knows that self-care can be particularly challenging for family members caring for someone with a disability or complex medical condition. This article includes tips and guidance especially for you.
  • For a quick takeaway, here is a short video to inspire self-care today: Self Care for Caregivers.
  • PAVE provides a library with more strategies to cultivate resilience, create calm through organization, improve sleep, and more: Self-Care Videos for Families Series.

Full Article

Raising children requires patience, creativity, problem-solving skills and infinite energy. Think about that last word—energy. A car doesn’t keep going if it runs out of gas, right? The same is true for parents and other caregivers. If we don’t refill our tanks regularly we cannot keep going. We humans refuel with self-care, which is a broad term to describe any activity or strategy that gives us a boost.

Self-care is not selfish! Without ways to refresh, we cannot maintain our jobs, manage our homes, or take care of people who need us to keep showing up. Because the demands of caring for someone with a disability or complex medical condition can require even more energy, refueling through self-care is especially critical for caregivers. This article is for you!

Before you read anymore, try this simple self-care tool called Two Feet, One Breath. Doctors use this one in between seeing patients:

  • Notice your two feet on the ground. Feel the ground and feel your feet under you, with the weight of your body dropping into the ground through your feet. If you don’t stand on two feet, then notice whatever part of your body is connecting you to furniture or the floor.
  • Notice that you are breathing in and imagine that breath starts in your feet (or seated body) and travels all the way to the top of your head.
  • Notice that you are breathing out and imagine that your outbreath goes all the way down and out through your feet (or seated body).

Two Feet, One Breath can become part of every transition in your day: when you get out of bed or the car, before you start a task, after you finish something, or any time you go into a different space or prepare to talk with someone. This simple practice highlights how self-care can become integrated into your day.

Keep in mind: Although a day at the spa might be an excellent idea, self-care doesn’t have to be fancy or expensive to have a big impact!

These practices matter a lot, especially because almost everyone knows or cares for someone with special needs. According to the Centers for Disease Control (CDC), at least 26 percent of the population experiences a disability. The result is widespread compassion fatigue, which is a way to talk about burnout from giving more than you get.

Anyone who isn’t convinced that self-care matters may want to watch a film by National Geographic, Stress, Portrait of a Killer, which includes research data to show how caring for a child with special needs can impact parents (minute 38 includes that report).

Below are some ways to pull on your own oxygen mask first!

Connect with others

Meet up regularly with people who have similar life stressors. The Parent-to-Parent network can help by matching parents with similar interests or by providing regular events and group meetings.

Caregivers of youth who are Deaf or Hard of Hearing (DHH) can connect with other family caregivers at Washington Hands and Voices. 

For caregivers of young people with behavioral health conditions, there are several family-serving agencies that might provide help and solidarity. Some agencies are listed at the end of this article and in PAVE’s Behavioral Health Toolkit.

Here are additional places to find one another:

  • School
  • Sports teams
  • Community center
  • Special Needs Parent Teacher Association
  • Extracurricular events
  • Online support groups

Get Enough Sleep

The body uses sleep to recover, heal, and process stress. If anxiety or intrusive thinking consistently interrupts sleep, self-care starts with some sleeping preparations:

Move the Body

Moving releases feel-good chemicals into the body, improves mood, and reduces the body’s stress response. Walk or hike, practice yoga, swim, wrestle with the kids, chop wood, work in the yard, or start a spontaneous living-room dance party.

Here is information from the Mayo Clinic about exercise:

  • It pumps up endorphins. Physical activity may help bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, any aerobic activity, such as a rousing game of tennis or a nature hike, can contribute to this same feeling.
  • It reduces negative effects of stress. Exercise can provide stress relief for your body while imitating effects of stress, such as the flight or fight response, and helping your body and its systems practice working together through those effects. This can also lead to positive effects in your body—including your cardiovascular, digestive and immune systems—by helping protect your body from harmful effects of stress.
  • It’s meditation in motion. After a fast-paced game of racquetball, a long walk or run, or several laps in the pool, you may often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements.
  • It improves your mood. Regular exercise can increase self-confidence, improve your mood, help you relax, and lower symptoms of mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

Be Mindful

Mindfulness can be as simple as the Two Feet, One Breath practice described at the top of this article. Mindfulness means paying attention or putting your full attention into something.

Focusing the mind can be fun and simple and doesn’t have to be quiet. Here are a few ways to practice that don’t involve a yoga mat or a meditation cushion:

  • Color
  • Work on/wash the car
  • Build something
  • Make art or do a craft project
  • Put together a puzzle
  • Laugh
  • Clean
  • More ideas: Mindful.org

Schedule Time

A day can disappear into unscheduled chaos without some intentional planning. A carefully organized calendar, with realistic boundaries, can help make sure there’s breathing room.

Set personal appointments on the calendar for fun, dates with kids, healthcare routines, and personal “me time.” If the calendar is full, be courageous about saying no and setting boundaries. If someone needs your help, find a day and time where you might be able to say yes without compromising your self-care. Remember that self-care is how you refuel; schedule it so you won’t run out of gas!

One of PAVE’s self-care videos for families is this one: Get Calm by Getting Organized.

Here’s more guidance: calendar.com: Why Stress Management and Time Management go Hand in Hand.

Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. PAVE provides an article with more information:  Respite Offers a Break for Caregivers and Those They Support.

Parents of children with developmental disabilities can seek in-home personal care services and request a waiver for respite care from the Developmental Disabilities Administration (DDA). Here are resources to help with that process:

For parents whose children and youth experience conditions related to behavioral health, PAVE provides a toolkit with resources for navigating crisis systems, medical care, school, and family support networks. Here are some family serving agencies:

Parents of youth who are blind or low vision may seek support from the Washington State Department of Services for the Blind (DSB). Learn from youth at PAVE: My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind.

Parents of youth who are Deaf or Hard of Hearing (DHH) can connect with the  Office of the Deaf and Hard of Hearing | DSHS or connect with other family caregivers at Washington Hands and Voices.

Mental Health Education and Support at School can be Critical

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

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

Mental Health support to students is a statewide priority

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

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

TIP: Family caregivers can get involved in advocacy work!

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

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

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

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

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

Special Education is one pathway for more help

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

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

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

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

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

Behavioral health counseling can be part of an IEP

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

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

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

Placement options for students who struggle with behavior

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

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

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

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

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

Strategies and safety measures for families and teachers

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

Hopeful students:

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

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

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

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

A press for school-based services and mental health literacy

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

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

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

Goals of mental health literacy are:

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

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

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

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

Further information on mental health and suicide:  

Family Support

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

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

Posted on by Nicol Walsh

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

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

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

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

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

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

Here are links to OSPI’s model forms for:

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

Sample Letter to Request a Functional Behavioral Assessment

Posted on by Nicol Walsh

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

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

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

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

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

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

Manifestation Determination

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

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

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

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

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

Request FBA formally, in writing

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

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

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

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

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

The FBA/BIP might prevent a shortened school day

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

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

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

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

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

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

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

Sample letter to request an FBA

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

Your Name
Street Address
City, State, Zip
Date

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

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

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

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

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

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

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

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

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

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

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

Sincerely,

Your Name

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

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

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

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

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

Mental Health America ranks states based on the incidence of mental illness and access to services. The 2022 youth rankings list Washington 39th in the nation. Various measures indicate a high prevalence of major depression, substance use disorder, and/or emotional disturbance as a category of disability on the Individualized Education Program (IEP). Barriers to treatment consider insurance as well as availability of services.  

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

New Journeys is an option when psychosis is present

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

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

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

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

Age of Consent in Washington is 13

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

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

The Adolescent Behavioral Health Care Access Act, passed by the Washington legislature in 2019, gives parents and providers more leverage when a young person is struggling with behavioral health and does not independently engage with treatment. The law allows parents/caregivers to bring a youth, ages 13-17, to a provider for evaluation without requiring consent from the youth.

The law includes elements introduced by the state Senate and House of Representatives, which originally titled the bill as HB 1874. In 2020, passage of HB 2883 added residential treatment as an additional option under Family Initiated Treatment (FIT).

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

Parents have felt shut out of their teenager’s care

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

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

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

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

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

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

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

Family-Initiated Treatment (FIT)

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

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

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

According to staff at Washington’s Health Care Authority, staffing shortages and other limitations within the behavioral health system have slowed implementation of the law. Families are encouraged to contact providers before taking an adolescent to a facility to determine if the provider has the capacity or ability to perform an assessment.

FIT in a community setting

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

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

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

For children and youth eligible for Apple Health, Wraparound with Intensive Services (WISe) is Washington’s most intensive outpatient treatment. PAVE provides an article: WISe Provides Team-Based Services for Washington Youth with Severe Behavioral Health Disorders.

The Health Care Authority (HCA) maintains a website page with information about WISe in multiple languages. Families can discuss their options for FIT with WISe staff and HCA leadership.

FIT in a hospital setting

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

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

What is required for involuntary treatment?

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

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

Guidance for Information Sharing

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

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

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

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

Family Support

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

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

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

Additional Resources

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

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

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

Procedural Safeguards: How to File a Special Education Complaint

Posted on by Nicol Walsh

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

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

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

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

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

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

Here’s new vocabulary to describe the change:

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

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

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

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

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

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

What does behavioral health mean?

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

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

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

Who is eligible for WISe services?

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

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

Five core areas are evaluated:

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

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

WISe requires public health insurance eligibility

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

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

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

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

Who is on the WISe team?

Team members include:

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

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

WISe requires family engagement

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

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

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

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

Does my child have to agree to WISe services?

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

What if WISe isn’t enough?

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

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

History, Advocacy, and Family Support

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

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

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

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

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

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

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

Parity laws, thoughtful language, stopping stigma

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

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

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

Civil Rights Protect Language Access for Parent Participation in Child’s Education

Posted on by Nicol Walsh

Under state and federal law, all parents have the right to information about their child’s education in a language they can understand. This information is translated on handouts in multiple languages from the Office of Superintendent of Public Instruction (OSPI).

Language access includes translated documents and an interpreter for meetings and conversations. Parents have the right to these services even if they speak some English. These rights are unchanged if the student can speak or read English.

Meetings and Conversations 

When families talk with teachers or school employees, the school is responsible to offer an interpreter if one is needed. This includes parent-teacher conferences, meetings about special education, or any other conversations about a student’s education.

The school is responsible to provide competent interpreters who are fluent in English and in the family’s language. Interpreters are responsible to understand any terms or concepts used during the meeting. It’s not appropriate to use students or children as interpreters.

The interpreter communicates everything said during the conversation in a neutral way, without omitting information or adding comments. The school ensures that interpreters understand their role and the need to keep information confidential.

The interpreter may be in person, on the phone, or in a virtual space. The interpreter may be a district employee or an outside contractor.

Translated Information

Schools are responsible to translate important written information into the most common languages spoken within their districts. If a family receives information that is not in their language, they have the right to request a translated copy or for a translator to share the information verbally.

The school is responsible to communicate with parents in their language about:

  • Registration and enrollment in school
  • Grades, academic standards, and graduation
  • School rules and student discipline
  • Attendance, absences, and withdrawal
  • Parent permission for activities or programs
  • School closures
  • Opportunities to access programs or services-including highly capable, advanced placement, and English language learner programs

For students with disabilities, families should expect all documents about a student’s services to be translated into their native language. These may include:

  • Meeting invitations
  • Evaluation results
  • Individualized Education Program (IEP)
  • Section 504 Plan
  • Prior Written Notice (PWN)*

*Prior Written Notice (PWN) is a document schools are required to provide to the family after a meeting. The PWN includes notes from the meeting and describes any changes to a student’s services before those changes take effect. Parents have the right to add information or request changes to the PWN.

Questions, Concerns, and Complaints

Language access is a civil right. Districts have staff members responsible for civil rights compliance and non-discriminatory practices. OSPI provides a list of civil rights compliance coordinators statewide, including their email and phone number. Families can reach out to this person to explain what happened and what would fix the problem.

If the concern or disagreement is not resolved, families may file a discrimination complaint.

How to Navigate School for Youth with Mental Health Concerns

Posted on by Nicol Walsh

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.

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

Parent to Parent (P2P) Connects Caregivers Statewide for Support

Posted on by Nicol Walsh

A Brief Overview

Full Article

Family caregivers for children with disabilities and special healthcare needs may feel isolated or uncertain about where to seek help for their children and themselves. A place for support is Parent to Parent (P2P), a network that connects families to trained parent volunteers who have experienced a similar journey with their own children. In addition to resources and information, parents share personal support and encouragement.

Families new to the disability world can find preliminary information and request help right away by filling out a short form on a website page designed just for them, hosted by The Arc of Washington: Getting Started/Contact Us…Welcome to our World.

The first P2P program started in Nebraska in 1971. Programs started in Washington State in 1980. A national P2P network was established in 2003 to provide technical support to the statewide networks, with a goal to reach all 50 states. P2P USA provides an historical timeline.

Washington has a network of P2P programs that serve every corner of the state. The Arc provides support to the regional programs and links them to national P2P resources. Families can go to arcwa.org to find a list of P2P coordinators, organized by region and listed under the counties served.

¿Hablas español? Para más información y hacer referidos, llama a su condado abajo: Coordinadores de Enlance Hispano.

Families can request a parent match 

When reaching out to the local P2P network, families can request a “parent match.” P2P leaders will locate a helping parent volunteer who has a similar lived experience and help the families get connected. From there, a supportive relationship can develop, where empathy, hope, and strength are shared.

Helping Parents cannot provide all answers, but they share insight, solidarity, and role modeling. They also share the joy and pride they’ve experienced while watching their child grow and achieve. A phrase commonly shared is: “I know, and I understand.”

In keeping with evidence-based practices promoted by national and state P2P organizations, the helping parent volunteers are training following a specific process and all personal information is kept confidential.

P2P services are free and include:

  • Emotional support for family caregivers of children with special needs
  • Referrals for community resources
  • Information sharing about disabilities and medical conditions
  • Family matching with trained helping parents
  • Social and recreational events
  • Training for parents who would like to become helping parent volunteers
  • Disability awareness and community outreach

Someone to listen and understand

Washington’s statewide P2P is funded by The Arc of Washington State, the Developmental Disabilities Administration (DDA), and the Department of Health/Children with Special Health Care Needs. Individual county programs receive funding from host agencies, county DDA offices, the United Way, local grants, private donations, and more.

The Council for Exceptional Children published a research paper about P2P in 1999. Respondents to a national survey reported the following benefits from participating in P2P:

  • Someone to listen and understand (66 percent)
  • Disability information (63 percent)
  • Care for my child (58 percent
  • Ways to find services (54 percent)

Statewide, various agencies and family-led organizations host local P2P programs. An interactive map of Washington State provides an easy way to locate information in English and Spanish about a P2P program in your area.

Another way to begin is to contact the statewide P2P coordinator, Tracie Hoppis, by sending an email to: parent2parentwa@arcwa.org.

Disability Rights for Littles: Key Information for Families of Babies, Preschoolers, and Primary-School Children

Posted on by Nicol Walsh

This two-part video series provides information about the rights of babies, toddlers, and young children with developmental delays or disabilities.

Part 1 provides information about early support services for babies through age 3. An interactive exercise is included to help families better understand how to participate in development of functional outcomes as part of the Individualized Family Service Plan (IFSP). The video includes information about how early support services are provided and delivered in Washington State and where to begin. Keep in mind that early services are provided in the natural environment—places where babies and toddlers would spend their days if there was no disability.

Part 2 includes information about the transition from early services into preschool and primary school. Families will learn how decisions are made about eligibility for an Individualized Education Program (IEP) and how to participate in educational decision-making for their child. Inclusion in general education is covered, with information about federal requirements for services in the Least Restrictive Environment, to the maximum extent appropriate. The video explains the components of an IEP and provides advocacy tips to support parents and children throughout their educational years.

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

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

Long COVID May Cause Disability and Eligibility for Services

Posted on by Nicol Walsh

Some people infected by the SARS-CoV-2 virus experience long-term symptoms—called Long COVID. If lasting symptoms significantly impact a person’s life, their ability to work, or their access to school, disability laws are in place to protect and support them.

Among federal laws that support disability rights are the Americans with Disabilities Act (ADA), the Rehabilitation Act of 1973 (which includes Section 504), and the Individuals with Disabilities Education Act (IDEA). Note that Part B of the IDEA supports special education services for ages 3-21, and Part C provides early interventions for children birth-3.

Disability protections are also provided by Section 1557 of the Patient Protection and Affordable Care Act. The U.S. Department of Health and Human Services with the Civil Rights Division of the Department of Justice provide guidance on the HHS.gov website: Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557.

The federal Administration for Community Living (ACL) published a resource that is a place to begin learning about where support is available: How ACL’s Disability and Aging Networks Can Help People with Long COVID. For people whose work is impacted by Long COVID, the U.S. Department of Labor’s Office of Disability Employment Policy provides information related to job accommodations, employee benefits, worker’s rights, and more.

If a student with Long COVID is impacted, they can be evaluated to determine eligibility for school-based services. For students already identified for school-based services, Long COVID might entitle the student to additional or adjusted services. The Office of Special Education and Rehabilitation Services (OSERS), issued a Fact Sheet July 26, 2021, explaining the rights of children who may have a disability condition related to Long COVID. The rest of this article focuses on protections for children and students.

Section 504 support

Section 504 is part of the Rehabilitation Act and includes protections for individuals accessing a public space, service, or program. A person of any age with a disability has the right to accommodations and modifications if their disability condition significantly impacts a major life activity, such as breathing, walking, learning…. Section 504 guarantees equitable access to opportunities publicly available to people without disabilities. If COVID infection has caused a disability condition because of its lasting impacts, then Section 504 protections may apply.

In school, a Section 504 Plan provides a student with support in general education. Criteria are broad and determined if the student has a disability condition that impacts any aspect of their educational access. If so, the student is eligible for support to meet their needs.

For example, a student with Long COVID might have impacts to their breathing, walking, attention span, or stamina. They may need accommodations for a late start, a shortened school day, a reduced workload, or a place to rest while at school. If mental health is impacted, they may need social-emotional or behavioral supports to continue accessing their general education curriculum and class spaces.

School-based IEP services

If evaluation determines that Long COVID impacts a student (ages 3-21) to such a degree that special education and related services are necessary, then the student may be eligible for an Individualized Education Program (IEP). One eligibility category for IEP services, for example, is Other Health Impairment (OHI). For a full list of eligibility categories see PAVE’s article: IDEA: The Foundation of Special Education.

An educational evaluation determines:

  1. Is there a disability?
  2. Is there significant educational impact?
  3. Does the student require Specially Designed Instruction and/or Related Services?

If Long COVID has created a condition in which all three criteria are met, then the student receives services with an IEP. If the student already has an IEP and a COVID infection has created new barriers to learning, then a new evaluation may be needed to determine what additional services the IEP team can consider.

Here are a few examples of how Specially Designed Instruction (SDI) and Related Services might be included in an IEP to support a student with Long COVID:

  • A teacher provides instruction differently to support a student whose ability to focus is significantly impacted by Long COVID. Progress toward a skill of attention/focus is tracked to see if there is improvement or if something about the teaching strategy needs an adjustment.
  • A teacher helps a student learn emotional coping strategies after Long COVID caused severe anxiety and mood dysregulation. A goal is set to track progress on this social emotional learning (SEL) skill.
  • A physical education teacher provides a specially designed PE program for a student with Long COVID whose symptoms get worse with physical exertion. Goals are set, and progress is monitored. See PAVE’s article about Adapted PE.
  • A student with lingering physical symptoms of COVID receives physical or occupational therapy as a Related Services through the IEP.
  • A student with psychological impacts from the illness receives counseling as a Related Service on the IEP.

Of course, this is a short and incomplete list of possibilities. IEP teams are responsible to develop programming that is individualized to meet a student’s unique and specific needs. Evaluation data is critical in development of the services and programming, and families have the right to request an Independent Educational Evaluation (IEE) at district expense if they don’t believe the district’s own data is accurate or comprehensive enough to develop an appropriate IEP.

The primary entitlement of a student receiving school-based services is FAPE—Free Appropriate Public Education. FAPE means that services enable progress that is appropriate in light of the child’s circumstances. If Long COVID has disabled a student’s ability to access school appropriately, then they may be entitled to FAPE. The services that provide FAPE are determined individually and by a team that includes family participants.

Early intervention services

Health officials are reporting developmental delays related to COVID infections. Young children, Birth-3, who have been ill with COVID and have ongoing symptoms may be eligible for disability protections from the IDEA Part C, which provides federal funds for early intervention services delivered through an Individualized Family Service Plan (IFSP). According to the OSERS document about Long COVID:

“A child suspected of having a disability should be referred as soon as possible, but in no case more than seven days, after the child has been identified. With parental consent, a timely, comprehensive, multidisciplinary evaluation must be completed, and if the child is determined eligible, a child and family assessment must be conducted to determine the appropriate early intervention services and supports for the child and family.”

Resources to help you

PAVE provides resource collections to support families of children in various ages and stages:

PAVE’s Family-to-Family Health Information Center (F2F) provides direct assistance for questions related to health and wellness, insurance, and access to medical services. For questions about early intervention or school-based services, our Parent Training and Information (PTI) staff can help. Click Get Help from our home page at wapave.org to request individualized support.

Body Sensing Meditation for Help with Sleep

Posted on by Nicol Walsh

Anxiety around bedtime is a struggle for many people of all ages. Whether the challenge is to fall asleep or stay asleep, worry doesn’t make getting enough zees any easier. Here is a strategy for calming that uses a body scanning strategy combined with breath awareness.

Parents might share this practice out loud to help a child go to sleep. The child also might learn to use all or parts of the technique on their own. Once you understand the basic strategy you can adapt the wording to meet your own needs or the needs of the person you are sharing this with. Some might even fall asleep before you get through the whole practice!

If you or another person experiencing this practice do not have all of their body parts you can ask whether it feels good to imagine those body parts while doing the body scan or whether it feels better to include only body parts that are present. For a person who is deaf or hard of hearing or for people who respond well to sensory touch, there is the option to gently touch parts of the body while moving through the practice. Once learned, the practice can be silent, internal, and personalized. Be creative about how to make it workable and useful for any person who might benefit.

To help with sleep, body sensing starts with the feet…

Please make yourself comfortable in bed or another space where you can relax and listen to the 10-minute meditation provided in this video.

When you are finished listening, if you are not yet ready for sleep, you may wish to begin again with the body sensing, always starting with your feet and traveling awareness up through the body, noticing the breath throughout your own journey into rest.

The Meditation Script

If you prefer to read this script aloud to someone else or to yourself, here are the words from the video:

Notice that you have two feet. On your feet there are toes, big toes, second toes, middle toes, fourth toes, and baby toes. Notice your feet and toes. Notice what your feet and toes are touching. Is it soft or hard? Cool or warm? Are your toes and feet relaxed? Notice that you have ankles. Your legs have a lower part. You have two knees. Your legs have an upper part. You have hips. Notice what your hips, legs and feet are resting on. Is there anything you could change to be even just a little bit more comfortable?

Notice your tummy. Notice that as you breathe in your tummy goes up. As you breathe out your tummy goes down. Notice what it feels like to breathe in and out of your tummy. As you breathe in, you are noticing that your tummy is filling up. As you breathe out, you are noticing that your tummy is getting empty. What does breathing feel like? Just notice.

Notice that behind your tummy is your back. You have a lower back, a middle back, and an upper back. Inside your back there are ribs, and your ribs have a back part, two sides, and a front part. Your front ribs meet at your chest.

Notice that when you breathe in, your tummy fills up and so does your chest. Your ribs get a little wider. When you breathe out your chest goes down and so does your tummy. Your ribs settle in. See if you can notice what it feels like when your tummy and chest fill up with breath and when they empty of breath. Notice how long it takes for a breath to come all the way in and to go all the way back out again. Your body knows how to breathe all by itself and does this all day long. Notice how it feels to pay attention to your body breathing.

Notice that your chest is in between your shoulders. Your shoulders are connected to your arms.  Your arms have an upper part. You have elbows. Your arms have a lower part, and you have two wrists. Notice your hands. You have fingers. Each hand has a thumb, first finger, second finger, third finger and a baby finger. Your hands have a back part and a palm. Notice what your shoulders, arms and hands are resting on. Is it soft or hard? Cool or warm? Are your arms, hands, and fingers relaxed? Is there anything you could change to be even just a tiny bit more comfortable?

Notice that your heart is beating inside your chest. You are breathing, and your heart is beating. Your body is taking care of its basic needs to be healthy and alive. Notice that right now you are safe. Notice the room you are in and whether there is lightness or darkness or some of both. Notice any sounds that are near or far. Notice that your body is breathing. Your chest and belly fill up each time you breathe in and empty each time you breathe out. Make any little changes that you need to be slightly more comfortable.

Notice that you have a neck and a head. Notice what the back of your head is resting on. Your head has a top part and two sides. You have eyebrows and two eyes. Your eyes can close so that your top eyelashes and your bottom eyelashes touch each other. Imagine that there is a color behind your closed eyes that is a soft dark blue. Notice how you feel when you peer into this deep blue space behind your eyes. Notice if there are any edges to the dark blue or if it seems to stretch forever, like the night sky.

Notice that you have a mouth. Inside your mouth there is a tongue, and you have teeth. Your mouth has a right side and a left side. Your mouth is resting.

Notice that you have a nose with two nostrils. Air comes into your nostrils and goes out through your nostrils. Notice that air traveling into your nostrils moves down into your chest and tummy. After the air empties from your tummy and chest it leaves through your nostrils. Notice the long journey that your breath takes through the body, from the nostrils to the chest and belly. Out from the belly, the chest, and the nostrils. What does it feel like to watch your body breathing?

Notice the shape of your whole body and what your body is resting on. You have feet and legs. You have a tummy and a back. Your arms and hands are resting. Your whole body is comfortable and resting. You are breathing with your nose, your chest and your belly. Your eyes are closed, and there’s a dark blue color behind your eyelids. We’re breathing in and breathing out through our noses. We are safe and resting. We are noticing what it feels like to rest.

Download the meditation script

Early Intervention: How to Access Services for Children Birth to 3 in Washington

Posted on by Nicol Walsh

A Brief Overview

  • Early intervention services help infants and toddlers with disabilities or delays to learn and catch up in their development. This article covers some basics about services for young children in Washington State.
  • Families concerned about a child’s development can call the Family Health Hotline at 1-800-322-2588, with support in multiple languages. Parents can complete a developmental screening online for free at Parent Help 123.
  • Early Learning and Development Guidelines are downloadable from the Office of Superintendent of Public Instruction. Hard copies can be purchased at myprint.wa.gov.
  • PAVE provides an article for next steps after age 3: What’s Next when Early Childhood Services End at Age 3? Another PAVE article for families new to special education: Steps to Read, Understand, and Develop an Initial IEP.
  • PAVE’s Parent Training and Information (PTI) staff help families understand and navigate service systems for children 0-26. Click Get Help at wapave.org or call 800-572-7368.

Full Article

New parents may struggle to know whether their child’s growth and development are on track. They may have a feeling that a milestone is missed, or they may observe siblings or other children learning and developing differently. Sometimes a parent just needs reassurance. Other times, a child has a developmental delay or a disability. In those cases, early interventions can be critical to a child’s lifelong learning.

Seek guidance from a Family Resource Coordinator (FRC)

Washington families concerned about a young child’s development can call the Family Health Hotline at 1-800-322-2588 (TTY 1.800.833.6384) to connect with a Family Resource Coordinator (FRC). Support is provided in English, Spanish and other languages. Families can access developmental screening online for free at Parent Help 123 developmental screening tool.

Several state agencies collaborated to publish Early Learning and Development Guidelines. The booklet includes information about what children can do and learn at different stages of development, focused on birth through third grade. Families can purchase a hard copy of the guidelines from the state Department of Enterprise Services. Order at: myprint.wa.gov. A free downloadable version is available in English and Spanish from OSPI’s website on a page labeled: Early Learning and Development Guidelines.

Washington early services are provided by ESIT

In Washington, the Department of Children, Youth and Families (DCYF) administers services for eligible children from birth to age 3 through Early Support for Infants and Toddlers (ESIT). Families can contact ESIT directly, or they can reach out to their local school district to request an evaluation to determine eligibility and consider what support a child might need. The ESIT website includes videos to guide family caregivers and a collection of Parent Rights and Leadership resources, with multiple language options.

Early intervention services are provided in the child’s “natural environment,” which includes home and community settings where children would be participating if they did not have a disability. According to ESIT, “Early intervention services are designed to enable children birth to 3 with developmental delays or disabilities to be active and successful during the early childhood years and in the future in a variety of settings—in their homes, in childcare, in preschool or school programs, and in their communities.”

Early services are delivered through an IFSP

Children who qualify receive services through an Individualized Family Service Plan (IFSP). The right to an IFSP is protected by Part C of the Individuals with Disabilities Education Act (IDEA). The IDEA is a federal grant program that provides funding for states to implement early learning and special education programs. Part B of the IDEA protects an eligible school-age student’s right to an Individualized Education Program (IEP). Part A includes general guidance about the educational rights of children 0-21.

Family caregivers, childcare professionals, teachers, or anyone else can refer a child for an early learning evaluation if there is reason to suspect that a disability or developmental delay may be impacting the child’s growth and progress. The school district’s duty to seek out, evaluate and potentially serve infants, toddlers or school-aged students with known or suspected disabilities is guaranteed through the IDEA’s Child Find Mandate.

First Step: Evaluate to determine eligibility

Early intervention is intended for infants and toddlers who have a developmental delay or disability. Eligibility is determined by evaluating the child (with parental consent) to see if the little one does, in fact, have a delay in development or a disability. Eligible children can receive early intervention services from birth to the third birthday. 

After a referral is accepted, a team of professionals uses standardized tools and observations to evaluate a child’s development in five areas:

  1. : Reaching for and grasping toys, crawling, walking, jumping
  2. : Watching activities, following simple directions, problem-solving
  3. : Making needs known, initiating games, starting to take turns
  4. : Vocalizing, babbling, using two- to three-word phrases
  5. : Holding a bottle, eating with fingers, getting dressed

The tools used to evaluate a child provide scores that are compared with the scores of children who are typically developing. Eligibility is met based on one or more of these conditions:

Next Step: Develop a service plan

If an infant or toddler is eligible, early intervention services are designed to meet the child’s individual needs. Options might include, but are not limited to:  

  • Assistive technology (devices a child might need)
  • Audiology or hearing services
  • Speech and language services
  • Counseling and training for a family
  • Medical services
  • Nursing services
  • Nutrition services
  • Occupational therapy
  • Physical therapy
  • Psychological services

Services are typically provided in the child’s home or other natural environment, such as daycare. They also can be offered in a medical hospital, a clinic, a school, or another community space. 

Individualized Family Service Plan (IFSP): What is the plan?

The IFSP is a whole family plan, with the child’s primary caregivers as major contributors to its development and implementation. Parents/custodial caregivers must provide written consent for services to begin. In Washington, Family Resource Coordinators (FRCs) help write the IFSP. Team members may include medical professionals, therapists, child development specialists, social workers, and others with knowledge of the child and recommendations to contribute. 

The IFSP includes goals, and progress is monitored to determine whether the plan is supporting appropriate outcomes. The plan is reviewed every six months and is updated at least once a year but can be reviewed at any time by request of parents or other team members. The IFSP includes:

  • The child’s current developmental levels and needs in physical, cognitive, communication, social/emotional, and adaptive areas
  • Family information: resources, priorities, and concerns of parents/caregivers.
  • Major results/outcomes expected from the child and family
  • Specific services:
    • Where services are provided—any services provided outside the child’s “natural environment” of home/daycare/community require a statement explaining the rationale for the placement
    • When the child receives services—the number of days or sessions for each service, and how long each session will last
  • Who pays for the services
  • Name and contact information for the Family Resource coordinator (FRC) responsible for IFSP implementation
  • Steps to begin at age 2.5 to support the child’s transition out of early intervention and perhaps into school-based services.
  • If relevant, additional services or information for the family—such as financial guidance or parenting support

Dispute resolution options are available

If parents have a concern or disagree with any part of the early intervention process, they can contact their Family Resource Coordinator (FRC). If issues remain unresolved, families may choose from a range of dispute resolution options that include mediation, due process, and more. ESIT provides access to a downloadable parent rights brochure with information about dispute resolution options in multiple languages.

Most services are free to families

Washington State provides most early intervention services at no cost to families of eligible children. Some services covered by insurance are billed to a child’s health insurance provider, with the signed consent of a family caregiver. The early intervention system may not use health care insurance (private or public) without express, written consent.

Part C of the IDEA requires states to provide the following services at no cost to families: Child Find (outreach and evaluation), assessments, IFSP development and review, and service coordination.

More resources

  • Learn the Signs. Act Early. The website includes tools for tracking milestones and materials for families to learn more and plan home-based activities to promote skill development. “Early intervention services can change a child’s developmental path and improve outcomes for children, families, and communities,” the CDC encourages. “Help your child, help your family! Families benefit from early intervention by being able to better meet their children’s needs from an early age and throughout their lives.”
  • The Center for Parent Information and Resources (CIPR—ParentCenterHub.org) provides an Overview of Early intervention.
  • The US Department of Education Office of Special Education Programs (OSEP) provides funding for the Early Childhood Technical Assistance Center (ectacenter.org), based at the University of North Carolina, Chapel Hill. The center builds state and local capacity to improve outcomes for young children with disabilities and their families.
  • PAVE’s Parent Training and Information (PTI) staff provide information, training, resources, and technical assistance to help family caregivers, students and professionals understand rights and responsibilities within education systems, including those for early learning. For support, complete an online help request at wapave.org or leave a message at the helpline: 1-800-572-7368/press 115.