Tag: Youth

Mental Health Education and Support at School can be Critical

Posted on by Nicol Walsh

A Brief Overview

  • Alarming statistics indicate the pandemic has worsened 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.
  • Students eligible for special education services through the federal category of Emotional Disturbance are more than twice as likely as other disabled peers to quit school before graduating.
  • These outcomes make adolescence a critical time for mental health promotion, early identification and intervention. Read on for further information and resources.
  • 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.
  • Help is available 24/7 from the Suicide Prevention Lifeline: 1-800-273-TALK.
  • Text HEAL to 741741 to reach a trained Crisis Text Line counselor.
  • For youth who need support related to LGBTQ issues, the Trevor Projectprovides targeted resources and a helpline: 866-488-7386.
  • A place to connect with other families is a Facebook group called Healthy Minds Healthy Futures.
  • Family caregivers can request support and training from A Common Voice, a statewide non-profit staffed with Parent Support Specialists who have lived experience parenting a child with behavioral health challenges. The program is part of the Center of Parent Excellence (COPE), managed by the state’s Health Care Authority, which provides contact information for regional lead parent support specialists.

Full Article

Alarming statistics indicate the COVID-19 pandemic has worsened circumstances for young people who were already struggling to maintain mental health. Washington’s most recent Healthy Youth Survey, from 2018, revealed that 10 percent of high-school students had attempted suicide within the year. Governor Jay Inslee on March 14, 2021, issued an emergency proclamation declaring children’s mental health to be in crisis.

The governor’s order requires schools to provide in-person learning options and directs the Health Care Authority and Department of Health to “immediately begin work on recommendations on how to support the behavioral health needs of our children and youth over the next 6 to 12 months and to address and triage the full spectrum of rising pediatric behavioral health needs.”

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

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 the legislative work group with 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.

Mental Health support to students is a statewide priority

Top priority for the statewide Student Behavioral Health and Suicide Prevention advisory group is to increase school staff who directly support students, including licensed mental health professionals imbedded in schools, counselors, social workers, school nurses and other support staff. The larger Children and Youth Behavioral Health Work Group (CYBHWG) shares that priority as an aspect of assessing and rethinking behavioral health delivery systems throughout the state.

In its recommendations to the 2022 legislature, CYBHWG recommends that the state fund a facilitated process to develop a strategic plan “to ensure that all Washington children and youth ages 0-25 years and families have timely access to high-quality, equitable, well-resourced behavioral health education, care, and supports across the continuum and where they need it.” School-based mental health services are listed as an aspect of those recommendations.

As schools returned to in-person learning in 2021, the Office of Superintendent of Public Instruction (OSPI) created a guidance document that addresses student mental health needs as a top concern: Questions and Answers: Provision of Services to Students with Disabilities During COVID-19 in the 2021–22 School Year. Included is this statement:

“The work of Washington public schools is to prepare students for postsecondary pathways, careers, and civic engagement. Washington must create the conditions for each student to be educated in racially literate, culturally sustaining, positive, and predictable environments that intentionally prioritize the instruction and development of social-emotional skills and mental health in addition to our primary focus on academic content.”

TIP: Family caregivers can ask their school what staff are 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. Note that some ESDs are licensed as behavioral health providers.

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

Another priority for agencies involved in the statewide work is widespread 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 an MTSS framework, which can create a structure for implementing positive behavioral supports and trauma-informed interventions.

OSPI, the guidance agency for Washington schools, prioritized 2021 budget requests to Empower all Schools to Support the Whole Child, including through MTSS. In January, 2021, OSPI was awarded a five-year, $5.3 million grant from the U.S. Department of Education to build regional coaching capacity to 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 framework 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.

Note that a student with a mental health condition could qualify for an IEP under the category of Other Health Impairment (OHI), which captures needs related to various medical diagnoses.

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 interventions, then the student may be eligible for an Individualized Education Program (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 and/or 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 and 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 70 percent of the cost of behavioral 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 first. If they are 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.

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.

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

With the release of the Healthy Youth Survey in Spring, 2019, the state issued a two-page Guide to Mental Health Information and Resources to provide more detail about the survey and to direct families and school staff toward resources for support.

Included is a list of factors that help youth remain resilient to mental health challenges:

  • Support and encouragement from parents/guardians and other family members, friends, school professionals, and other caring adults
  • Feeling that there are people who believe in them, care about them, and whom they can talk to about important matters
  • Safe communities and learning environments
  • Self-esteem, a sense of control and responsibility, and problem-solving and coping skills
  • Having an outlet for self-expression and participation in various activities

The handout includes tips for parents and other adults supporting 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 they shouldn’t have access to.

State options for behavioral health services and support

For Washington children and youth with Medicaid insurance, the highest level of community-based care in behavioral health is provided through Wraparound with Intensive Services (WISe). The WISe program was begun as part of the settlement of a class-action lawsuit, TR v Dreyfus, in which a federal court found that Washington wasn’t providing adequate mental-health services to youth. WISe teams provide a wide range of therapies and supports with a goal to keep the young person out of the hospital.

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

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.

The Family, Youth and System Partner Round Table (FYSPRT) provides a meeting space for family members and professionals to talk about what’s working and what isn’t working in mental healthcare. FYSPRT groups provide informal networking and can provide ways for families to meet up and support one another under challenging circumstances.

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

Family Initiated Treatment (FIT) is an option in Washington

Youth older than 13 have the right to consent or not consent to any medical treatment in Washington State. Parents and lawmakers throughout 2018-2019 engaged in conversations about how that creates barriers to care for some teens struggling with behavioral health conditions. The Adolescent Behavioral Health Care Access Act (HB 1874), became law in May 2019. PAVE provides an article about the law and its provision for Family Initiated Treatment.  

Places to seek referrals and information

Seattle Children’s Hospital in 2019 launched a referral helpline. Families can call 833-303-5437, Monday-Friday, 8-5, to connect with a referral specialist. The service is for families statewide. In addition to helping to connect families with services, the hospital is gathering data to identify gaps in care.

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.

Key Resources

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

  • Suicide Prevention Lifeline (1-800-273-TALK)
  • 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)

Further information on mental health and suicide:  

Parent to Parent (P2P) Connects Caregivers Statewide for Support

Posted on by Nicol Walsh

A Brief Overview

Full Article

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

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

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

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

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

Families can request a parent match 

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

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

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

P2P services are free and include:

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

Someone to listen and understand

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

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

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

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

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

Healthcare Transition and Medical Self-Advocacy

Posted on by Nicol Walsh

When young people turn 18, a lot happens. Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.

For example, at age 18 a young adult is responsible to sign official paperwork to authorize procedures or therapies. They must sign documents to say who can look at their medical records, talk to their doctors, or come to an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability.

In this video, young adults living with various disability and medical conditions talk about their journeys in the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!

For more information and resources around healthcare transition and self-advocacy, follow these links to the Family to Family Health Information website.

Another place for information is the Informing Families website, which includes a section called got transition.

Life After High School: A Two-Part Training to Help Families and Young People Get Ready

Posted on by Nicol Walsh

Making the move from high school to what happens next can be confusing. Making that transition during a worldwide pandemic has added challenges. This training provides key information for families to ensure that school-based services are providing what students with disabilities need to launch adult lives that meet their goals for further education, work, and independent living. Attention families with younger children: It’s never too soon to start learning this information!

Part 1 of this two-part presentation provides foundational information about the rights of students with disabilities, with some content related to COVID-19. Students with disabilities are entitled to a Free Appropriate Public Education (FAPE), and that includes a well-planned journey through school, graduation, and whatever happens next. Accessibility and equity are rights throughout school and adulthood. Look and listen to learn more.

Part 2 provides key information about tools for students moving toward graduation and beyond. For example, IEP transition planning is linked to the High School and Beyond Planning process for Washington students. This training provides information about service agencies that support students while they are in school and into adulthood, with resources and places to go for further support and information.

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

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

Support for Youth Whose Post-High School Plans were Impacted by COVID-19

Posted on by Nicol Walsh

A Brief Overview

  • Students who did not make adequate progress on IEP goals due to COVID-19 may be eligible for Recovery Services. IEP teams are responsible to make individualized, student-centered decisions about this option for additional educational services.
  • Students who turned 21 and “aged out” of their IEP services during the pandemic may be eligible for Transition Recovery Services. Read on for information and resources.
  • Transition Recovery Services are funded through a combination of state and federal sources, including through the American Rescue Plan. Transition Recovery will be an option for several years—beyond Summer 2021.

Full Article

For students with disabilities, getting ready for life after high school can include work-based learning, career cruising, job shadowing, college tours, training for use of public transportation, community networking, agency connections, and much more. A student’s Individualized Education Program (IEP) is built to guide a student toward unique post-graduation goals.

COVID-19 halted the high-school transition process for many students. IEP teams are required to consider Transition Recovery Services to help those students get back on track toward post-secondary goals, including if they “aged out” by turning 21.

Transition Recovery Services are funded through a combination of state and federal sources, including through the American Rescue Plan. Transition Recovery will be an option for years—beyond summer 2021.

Keep in mind that Transition Recovery Services are uniquely designed for a specific student, and the “school day” may look quite different than traditional high school.

Eligibility for Transition Recovery Services is an IEP team decision

To consider Recovery Services, the IEP team reviews what a student was expected to achieve or access before COVID-19. The team then compares those expectations to the student’s actual achievements and experiences. If a service was “available,” but not accessible to the student due to disability, family circumstances, or something else, the team considers that.

Recovery Services are provided to enable students to get another chance on their transition projects and goals. According to guidance from Washington’s Office of Superintendent of Public Instruction (OSPI), IEP teams are responsible to discuss these topics in good faith and not rely solely on specific data measures for decision-making:

“Recovery Services should focus on helping the student achieve the level of progress on IEP goals expected if the pandemic had not occurred. These services should not be based on a percentage or formula calculation; the timeline and amount of recovery services should be an individualized decision for every student with an IEP.”

Keep in mind that schools are required to include family members on the IEP team. OSPI’s guidance also states, “Parents and families are key partners in identifying the need for Recovery Services, as they generally have current information about the student from the time of the school facility closures and since. As with all special education processes, school districts must provide language access supports, including interpretation and translation as needed, to support decisions about recovery services.

“School districts must ensure parents have the information and supports necessary to participate in the decision-making process.”

Here’s a set of questions for IEP teams to consider:

  1. What did we hope to accomplish?
  2. What did we accomplish?
  3. What was the gap, and how can we fill that gap?

OSPI’s guidance was shared with families at a May 26, 2021, webinar. OSPI shares its webinars publicly on a website page titled Monthly Updates for Districts and Schools.

Every IEP team should talk about Recovery Services

OSPI makes clear that school staff are responsible to discuss Recovery Services with every family that is part of an IEP team. “Families should not have to make a special request for this process to occur,” according to Washington’s Roadmap for Special Education Recovery Services: 2021 & Beyond.

The urgency of the discussion depends on a student’s circumstances. IEP teams supporting students at the end of their high-school experiences may need to meet promptly. Other teams may wait until the new school year or until the annual IEP review.

According to state guidance, “To be clear, OSPI is not requiring districts to immediately schedule and hold IEP meetings for every student with an IEP. These decisions may need to take place prior to the start of the 2021–22 school year, prior to the annual IEP review date, or could happen at the upcoming annual review date if the district and parent agree.”

The key question to bring to the meeting

TIP: Families and schools will consider this big-picture question, so write this one down and carry it into the IEP meeting:

“How will the school provide the services that the individual student needs to complete all of the experiences and learning that the IEP team had planned before a pandemic interrupted the high-school transition process?”

Transition Recovery Services are documented with PWN

OSPI guides IEP teams to document a support plan for a post-21 student through Prior Written Notice (PWN), which is a way schools notify families about actions related to a special education program. The school is responsible to provide PWN to family participants after any IEP meeting.

TIP: Review the PWN carefully to ensure that the discussion, decisions, and action steps are accurate. Family members can submit amendments to a PWN.

The IEP document itself cannot be amended to include post-21 services because federal law supports the right to a Free Appropriate Public Education (FAPE) for eligible students only through age 21.

What can families do?

  1. Reach out to the IEP case manager to discuss when to meet to discuss Recovery Services as part of a team meeting. If there is urgency, make that clear in a written request.
  2. Ask for documentation about progress made toward IEP annual and post-secondary goals during COVID-impacted school days. If there is no documentation, ask for a review of pre-pandemic data and an evaluation to determine present levels of performance.
  3. Share observations about what worked or didn’t work during remote or hybrid learning, and any missed opportunities caused by the pandemic. Ask for the school to formally document family and student concerns as part of the IEP team record.
  4. Procedural Safeguards include family rights to dispute resolution, including the right to file a formal complaint when there is reason to suspect a special education student’s rights were violated.

What if my student’s Transition Plan wasn’t fully formed?

An IEP can include transition planning any time the student, family, or teachers decide that life planning needs to be considered as an aspect of IEP services. The IEP Transition Plan aligns with a student’s High School and Beyond Plan, which Washington requires to begin before a student leaves Middle School. Therefore, some IEPs include a transition plan by about age 14.

Federal law (Individuals with Disabilities Education Act/IDEA) requires an IEP to include a Transition Plan by age 16. Although students aren’t required to participate, schools are required to invite students to participate in IEP meetings once transition is part of the program. PAVE provides an article to encourage youth participation on the team.

If the Transition Plan didn’t get built in a timely way due to the pandemic, IEP teams can begin that process and then consider whether Transition Recovery Services are warranted.

How are graduation requirements impacted by COVID?

On March 2, 2021, Governor Jay Inslee signed into law HB 1121, which allows for individual students to waive credit or testing requirements if their ability to complete them was disrupted by the pandemic. Temporary waivers were granted in 2020, and the new law gives the State Board of Education (SBE) permanent authority to grant school districts emergency waivers for cohorts of graduating seniors into the future. Schools are expected to help students meet requirements before falling back on the emergency waiver as a last resort.

To meet graduation requirements in Washington State, students choose from Graduation Pathways. For a student receiving special education services, the IEP team (including student and family) determines which pathway a student will follow and the target graduation date.

All students have the right to participate in Commencement

Students with disabilities have the right to participate in commencement ceremonies with same-age peers regardless of when they complete requirements for a diploma: See information about Kevin’s Law.

Stay Stubborn! One Girl’s Self-Determination while Navigating Healthcare

Posted on by Nicol Walsh

By Kyann Flint

Being stubborn is the right approach when it means self-determination. Having the drive to learn what you want and need and then speak up for yourself gives you control over your life. 

I learned that lesson young. By age 6, I was advocating in my own healthcare. My doctor wanted to stick a swab up my nose and down my throat at the same time. I told him, “No!” and asked, “What would that accomplish?” I was not sick. Why put me through that? I had been through enough tests. If this one was not going to improve my pain or give me a diagnosis, then it did not need to happen. Because I spoke up, it didn’t!

My parents supported my growing self-advocacy and also advocated for me. As my voice blossomed, so did my skills for self-determination. The self-determination skills I worked on throughout childhood have helped me gain independence and make some of the most important adult decisions of my life.

When I was 8, I was diagnosed with a type of genetic peripheral neuropathy called Charcot Marie Tooth (CMT). The coating around my nerves becomes scarred and cannot be repaired, making it hard for my brain to tell my legs, arms, feet, and hands what to do.

I continued to have symptoms that did not quite fit this diagnosis, so testing continued. By age 12, I started asking whether further diagnoses would improve my quality of life. The answer was no, so I chose to end the poking and prodding and deal with my symptoms as they came.

Right after I turned 21, I was in tremendous pain and needed more help. Three years later, I had a second diagnosis: Heredity Spastic Paraplegia. Four years after that, the cause of my pain was finally found. My bladder was failing, which made it difficult to go to the bathroom. I eventually lost the ability to go to the bathroom on my own. On September 30, 2020, I made one of the best decisions of my life and had the Mitrofanoff surgery that now allows me to go to the bathroom independently.

I needed a lot of self-determination to get to this point. Before the surgery, one doctor advised against it, explaining that I wasn’t a good candidate due to my progressive neuromuscular disorders. She predicted that I would be incapacitated one day, so “why bother?” I decided that even if she were right, I wanted the independence that the surgery could provide now. I found a new surgeon. I am so thankful that I did!

My surgeon related well with me and supported my belief that I was “worthy” of this procedure. He agreed that it was a good choice to enable me to live more independently right now. The choice to proceed wasn’t easy or pain-free. I needed many tests and procedures, including a colonoscopy without anesthesia. Delays in scheduling the surgery tested my self-determination, but I persevered.

My surgery included a week in the hospital and months of recovery, but my stubborn nature helped me get through it all, despite the frustration of having limited manual dexterity and being legally blind. But I figured out how to go to the bathroom independently!

It took a lot of self-determination to move forward with one of the best decisions of my life, but I am proud that I made this decision. If you have a decision to make in your life, I hope you will tap into your own stubborn self-determination. Figure out what you need and want and speak up for yourself. I’m so glad I did.

About the author: Kyann Flint, Director of Accessibility for Wandke Consulting, is a passionate advocate for the disability community. As a person with a disability, she strives to educate society on how social barriers, like ignorance and stereotypes, limit the disability community. Kyann loves coffee and traveling.

School to Adulthood: Transition Planning Toolkit for High School, Life, and Work

Posted on by Nicol Walsh

Looking to the future can feel exciting, hopeful, confusing, overwhelming—or all emotions at once. For families supporting a young person with a disability, it’s never too soon to begin planning to ensure a smooth process from the teen years toward whatever happens next. This toolkit supports families as they organize this multiyear project.

Learn the Words

A good place to begin is a Glossary of Key Terms for Life After High School Planning, which provides vocabulary building and an overview of topics relevant to this important phase of life. 

Pandemic Impacts

A student receiving special education services has a right to education through age 21, if needed, to meet requirements and achieve readiness. Some IEP teams may determine that because of COVID-19 a student needs to stay in school beyond 21 to access Recovery Services, a term developed by the Office of Superintendent of Public Instruction (OSPI) to help students recover learning losses related to the pandemic. Decisions about Recovery Services are up to the work of IEP teams, which include parents and students.

Commencement Access

Regardless of when a diploma is earned, a student can participate in Commencement at the end of a traditional senior year, with peers, under a Washington provision called Kevin’s Law. Families may want to plan well in advance with school staff to consider how senior year events are accessible to youth with disabilities.

The Big Picture

The right to a Free Appropriate Public Education (FAPE) includes the right to school-based services that prepare a young person with a disability for adult life. PAVE provides an overview of transition planning in a two-part video series. Part 1 includes foundational information about the rights of students with disabilities, with some content related to COVID-19. Part 2 provides key information about tools for students moving toward graduation and beyond. For example, IEP transition planning is required to be linked to the High School and Beyond Planning process for Washington Students, and a Transition Plan is an IEP requirement by age 16.

Here are links to the two videos and an article that includes some of the same content:

Various state agencies collaborated to provide a downloadable guidebook: Guidelines for Aligning High School & Beyond Plans (HSBP) and IEP Transition Plans. Included are career-planning tools and linkages to current information about Graduation Pathways, which changed in 2019 when the Washington State Legislature passed House Bill (HB) 1599.

Student Self-Advocacy

As they move toward adulthood, many students benefit from opportunities to practice skills of self-advocacy and self-determination. One way to foster those skills is to encourage youth to get more involved in their own Individualized Education Programs (IEPs). To support that, PAVE provides this article: Attention Students: Lead your own IEP meetings and take charge of your future. Included is a handout that students might use to contribute to meeting agendas.

The RAISE Center (National Resources for Advocacy, Independence, Self-determination and Employment) provides a blog with transition related news, information, ideas and opinions. Topics in 2020-21 include how to “Be the Best You,” how issues of race and disability intersect with equity, and how “The Disability Agenda Could Bring Unity to A Fragmented Society,” by RAISE Center co-director Josie Badger, who is a person living with disability.

Student Rights after High School

An Individualized Education Program (IEP) ends when a student leaves secondary education. The protections of the Americans with Disabilities Act (ADA) and of Section 504 of the Rehabilitation Act of 1973 are ongoing throughout the lifespan.

These laws provide for appropriate accommodations in public programs and facilities. To support these disability protections, The IEP accommodations page or a Section 504 Plan can travel with a student into higher education, a vocational program, or work. Often a special services office at an institution for higher learning includes a staff member responsible for ensuring that disability rights are upheld. PAVE provides an article with general information about Section 504 rights that apply to all ages: Section 504: A Plan for Equity, Access and Accommodations.

Universal Design supports everyone

Asking for rights to be upheld is not asking for special favors. A person living with disability, Kyann Flint, wrote an article for PAVE to describe how Universal Design supports inclusion. Her article can provide inspiration for young people looking for examples of what is possible, now as ever: COVID-19 and Disability: Access to Work has Changed.

Agencies that can help

Washington State’s Division of Vocational Rehabilitation (DVR) provides services for high-school students engaged in transition planning as well as adults seeking employment. PAVE provides an article that describes Pre-Employment Transition Services (Pre-ETS) and more: Ready for Work: Vocational Rehabilitation Provides Guidance and Tools.

Services for individuals who are deaf or hard of hearing are provided by Washington’s Center for Deaf and Hard of Hearing Youth (CDHY), which was formerly called the Center for Childhood Deafness and Hearing Loss (CDHL). This statewide resource supports all deaf and hard of hearing students in Washington, regardless of where they live or attend school.

Services for individuals who are blind or living with low vision are provided by Washington’s Department of Services for the Blind (DSB). Youth services, Pre-Employment Transition Services (Pre-ETS), Vocational Rehabilitation, Business Enterprise Program, and mobility and other independent-living skills are served by DSB.

The Developmental Disabilities Administration (DDA) also has a variety of school-to-work and waiver programs that support youth. PAVE provides a video to support families through the DDA eligibility process. An article provides further detail: How to Prepare for a DDA Assessment.

Not all youth with disabilities are able to access employment-related services through DVR, DSB, or DDA. A limited additional option is Goodwill, which provides access to a virtual learning library. Students can take classes at their own pace for skills development. Employment skills, workplace readiness, interviewing skills and more are part of the training materials. A pilot project has made the library available to individuals in select counties, and more widespread access is forthcoming. To request further information, call 253-573-6507, or send an email to: library@goodwillwa.org.

Graduation’s over: Why is school calling?

Schools are responsible to track the outcomes of their special education services. Here’s an article to help families get ready to talk about how things are going: The School Might Call to Ask About a Young Adult’s Experience After High School: Here’s Help to Prepare

Benefits Planning

A consideration for many families of youth with disabilities is whether lifelong benefits will be needed. Applying for social security just past the young person’s 18th birthday not only creates a pathway toward a cash benefit but enables the young person to access Medicaid (public health insurance) and various programs that depend on Medicaid eligibility.

Benefits Information for Individuals and Families is available from the Washington Initiative for Supported Employment (gowise.org). Clark County WISE staff partner with PAVE and other regional agencies to produce a Family Training Series, with topics that include school services planning, life planning, social security, and more. The Start Now 2020-21 series was launched in partnership with PAVE, and a recording is accessible in English, Spanish, sign language, and with subtitles: Transition Training Series: Preparing for High School and Beyond (In English and Spanish).

Telling Your Story with a Purpose: How to Inspire Action in Two Minutes

Posted on by Nicol Walsh

Every person’s story has the potential to impact how others think or act. Disability rights have been legislated because of individuals who spoke up and sparked change. This video introduces a strategy for telling a potent story in two or fewer minutes, using your own hand to guide the process. Think of this as a hand model for an inspirational elevator speech to improve or inspire:

  • Self-advocacy
  • Public comment
  • A meeting with public officials
  • Legislative forums or candidate meetings
  • Community education

 The Arc of Washington State provides pathways for people to participate in legislative advocacy. The Arc serves people with intellectual and developmental disabilities of all ages and their families. 

Some staff members at PAVE are certified to teach Telling your Story with a Purpose, a training created by the state’s Department of Health and Seattle Children’s Hospital. For support to create your story, fill out a PAVE Helpline request, and a trained staff member will contact you.

Questions to consider first:

  1. What is the challenge or problem that you, your child or your family faces? Think of a problem that also affects other people and families. Consider writing one sentence about people in general and one sentence about your own story, child, or family. 
  2. How does this challenge affect others?
  3. How might this challenge affect others if nothing changes?
  4. What needs to change?
  5. What can be done to improve the situation?
  6. Who has the power to make a change? 

Key information for your story:

  1. Who are you?  Be sure to say your name and the district, city, or town you live in.
  2. If you want to include information about other people be sure you have permission before sharing anything confidential, such as names, ages, or health information.
  3. Clearly and simply describe the problem or challenge.
  4. Explain why this is important.
  5. Include a short story (4-5 sentences) about how this issue has affected you and your family. If possible, use a positive example – a situation where things went well and why you want others to have a similar experience.
  6. What do you want your listener to do? State your request in one sentence with 30 or fewer words. Avoid a general request for “support.” Provide a clear action:
    • “I ask you to vote for…”
    • “I want you to change this policy in order to…”
    • “I want you to fund a program that…” 
  7. Stop and check: Consider if your comments might make the listener feel criticized or attacked. Focus on the solution. Make sure you’ve included statements about how others in the community can benefit.
  8. End by restating your request and saying thank you. When possible, thank the listener for something they have done in the past that you appreciate–voting for a bill, serving on a committee, funding a program.