Tag: family support

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

Posted on by Nicol Walsh

A Brief Overview

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

Connecting to the World through Mobility

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

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

Ableism, Troublemaking, and the Importance of Mobility

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

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

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

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

Spreading the Word about the Importance of Self-Initiated Mobility

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

Trying Out or Obtaining Mobility Technology

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

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

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

References and Additional Resources:

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

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

UNICEF Assistive Products and Inclusive Supplies

Family Information Guide to Assistive Technology

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

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

Center for Research and Education on Accessible Technology and Experiences CREATE

Back To School Checklist!

Posted on by Nicol Walsh

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

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

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

Here’s a checklist to help you get organized:

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

Below is an infographic of the above information.

Tip! you can click on the image and access an accessible PDF to print and keep handy.

Back to School Checklist click to find the accessible PDF

Click to access an accessible PDF of the infographic above

Transition Triangle

Posted on by Nicol Walsh
The transition triangle talks about the relationship between the High School and Beyond Plan , the IEP transition plan and Agency supports from DDA, DVR and DSB. within that triangle of support is the student asking themselves: Who they are, what is their future and their goals.

The planning process to support a student with disabilities toward their adult life plans requires coordination and organization. This graphic provides a visual overview of the work and who is responsible to help.

The center upside down triangle describes key questions for a student as they move through school and toward adulthood:

  1. Who am I? Answers include what the student is interested in, what they are good at, what they struggle with, and how they see themselves.
  2. What’s my future? Students can begin to imagine where they might work, whether higher education will be part of their future, and how they might live.
  3. How do I reach my goals? The answers are a long-term project. A good planning process ensures that work done today is moving the student toward their vision for adult life.

The three colored triangles on the corners of the graphic represent three tools that help students ask and answer these questions.

The purple triangle on the bottom left represents the High School and Beyond Plan. Washington State requires schools to begin supporting all students with a High School and Beyond Plan before they leave middle school. The plan includes questions to help the student think about where they might work someday and how much education they will need to get that job. The plan is designed to make sure time spent in school is moving the student toward adult goals. The High School and Beyond Plan addresses the same questions that are listed in the center of our triangle and is often managed by staff in a school’s counseling center.

The blue triangle on the bottom right represents the transition plan, which is required in a student’s Individualized Education Program (IEP) by the school year when they turn 16. Goals in the IEP Transition Plan include further education/training, employment, and independent living as parts of a student’s program. A student with disabilities has the right to a Free Appropriate Public Education (FAPE) until they earn a diploma or turn 21. The IEP includes a target graduation date, determined by the IEP team. The state requires the IEP Transition Plan to align with the High School and Beyond Plan. School staff and the family collaborate to make sure these two tools match up to best support a student’s progress.

The teal triangle on top of the pyramid represents agencies that might provide Vocational Rehabilitation (VR) services. The Developmental Disabilities Administration (DDA) has a variety of school-to-work programs for eligible students: A DDA case manager can provide information about options. The Division of Vocational Rehabilitation (DVR) provides Pre-Employment Transition Services (Pre-ETS) for students still in school as well as vocational rehabilitation services for adults with disabilities. As they transition out of school, members of some Native American tribes may access Tribal Vocational Rehabilitation (TVR) services. The Department of Services for the Blind (DSB) is a separate agency providing Pre-ETS for youth and vocational rehabilitation services for individuals who are blind or low vision. Staff from these agencies may work with an IEP team and counselors at school to make sure everyone is working together to support the student in the center.

Ideally a student with disabilities has people supporting all of the features on this transition triangle. Best practice is for all agencies and supporters to collaborate as they help a student move toward a successful adult life.

PAVE has made a fillable worksheet to help you answer these questions.

Download the Transition Triangle Worksheet

In addition, PAVE has a college readiness workbook ready for you to use. For direct assistance from PAVE, click Get Help. The Office of Superintendent of Public Instruction (OSPI) provides information about graduation requirements for a student in Washington State

Infant Early Childhood Mental Health

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

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

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

The evaluation looks at the child’s ability to:

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

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

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

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

If you are concerned about a child’s development:

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

More Resources:

Evaluations Part 1: Where to Start When a Student Needs Special Help at School

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

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

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

Referral Timeline Initial Evaluation and Individualized Education Program (IEP)

Evaluation is a 3-part process

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

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

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

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

Don’t wait to evaluate because of provider wait lists

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

What areas can be evaluated?

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

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

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

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

Eligibility Categories of Disability

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

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

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

What to do if you disagree

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

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

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

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

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

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

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

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

Help from PAVE

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

Advocacy Tips for Parents

Posted on by Nicol Walsh

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

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

Before a meeting…

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

At your meeting…

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

After a meeting…

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

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

PAVE Provides Sample Letters to Support Families in their Advocacy

Posted on by Nicol Walsh
Download this page: Sample Letters to Support Families in their Advocacy

An advocate is someone who works toward a cause or goal. Sometimes the hardest part of advocacy is figuring out what to do next. When a child has unmet needs at school, family advocates can seek changes to a student’s services by asking for an evaluation, a meeting, a behavioral assessment, or something else. Putting any request in writing formalizes the process and holds everyone accountable.

PAVE helps families get started with a collection of sample letters. We’ve bundled links to those letter templates here for easy reference. Each link takes you to a short article with key information to help you understand the process of special education and how your customized letter can move you forward in that process.

Always keep your “why” in mind. Why are you taking action? Because you want something to improve for your child! PAVE’s short video, Quick Start Your Advocacy in Two Steps, might help you get ready to craft a letter. The video helps you ask two key questions:

  • What do you want?
  • Who has the power to work with you and make that happen?

As you write your letter, keep those questions and your “why” top of mind. Here are articles with sample letters to help you begin your next step:

  • Sample Letter to Request Evaluation: Schools are required to evaluate students to determine eligibility for a Section 504 Plan or an Individualized Education Plan (IEP). A referral can come from anyone with knowledge of the student and must be in writing. This article provides a sample letter and a link to an alternative form provided by the Office of Superintendent of Public Instruction (OSPI).
  • Sample Letter to Request an IEP Meeting: Family members can request an IEP team meeting anytime there are concerns about how the IEP is being implemented and whether a student may have unmet needs. This article includes information about who is required to attend an IEP meeting and the rights of parents to participate in educational decision making.
  • Sample Letter to Request a Functional Behavioral Assessment: If a child’s behavior is getting in the way of their education, the school is responsible to assess the problematic behaviors and develop a support plan to teach the student what to do instead. In addition to a sample letter, this article provides a link to a video to help families and schools work together through this process.
  • Evaluations Part 2: Next Steps if the School Says ‘No’: If the school evaluates a student and says they aren’t eligible for an IEP or a specific area of service, parents have steps they can take if they disagree. One option is to request an Independent Educational Evaluation (IEE) from an outside provider. This article provides a sample letter for requesting an IEE at school district expense. If the family requests an IEE because they disagree with the school’s evaluation or its conclusions, then the district must pay for the IEE or deny the request through Due Process: IEE denials are evaluated by an Administrative Law Judge.

Families who want individualized assistance can reach out to PAVE by clicking Get Help and filling out the online request form or by calling 1-800-5-PARENT.

Download this page: Sample Letters to Support Families in their Advocacy

Steps to Read, Understand, and Develop an Initial IEP

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

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

What is the student’s eligibility category?

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

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

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

Know what’s in the IEP before you meet

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

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

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

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

Start with the Service Matrix

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

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

Refer to the Present Levels statements

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

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

Compare Service Matrix and LRE statement

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

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

Read the list of accommodations.

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

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

Accommodations for state testing

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

Communication and Prior Written Notice (PWN)

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

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

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

Sign Consent for services to begin

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

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

Helping a Loved One with a Fear of Needles Get Vaccinated

Posted on by Nicol Walsh

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

Tips and Tricks

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

Resources and Related Information

  • Pediatricians build vaccination schedules for children at specific ages and stages to maximize their effectiveness. Waiting until later might harm your child.
  • The federal Centers for Disease Control and Prevention (CDC) has detailed recommendations for Child and Adolescent Immunizations, including a schedule.
  • If a person is allergic to eggs, gelatin, polyethylene glycol, or yeast, let a doctor know. Some vaccines include these ingredients. If you ask, there may be another option.
  • All CDC recommended vaccinations go through a rigorous Testing and the Approval Process.
  • If you have read, heard, or thought about something that makes you nervous, tell your doctor. Always ask where information comes from, and check to make sure the source is trustworthy.

Tips to Help Parents Plan for the Upcoming School Year

Posted on by Nicol Walsh

A Brief Overview

Full Article

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

Locate and organize documents

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

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

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

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

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

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

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

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

Mark your calendar with important dates

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

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

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

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

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

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

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

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

Consider whether behaviors need to be addressed

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

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

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

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

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

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

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

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

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

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

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

Write an informal letter to your student’s teachers

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

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

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

Enjoy time with your children

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

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

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

More homework for extra credit!

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

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.