Tag: Youth

Life After High School: Tools for Transition

Posted on by Nicol Walsh

Helping a student with disabilities prepare for life after high school requires thoughtful organization and planning. This presentation describes three ways to support this important time of life:

  1. High School and Beyond Plan
  2. IEP Transition Plan
  3. Agency Support

Here are resources referenced in the video:

  • OSPI Model Forms: Scroll down to find and open the IEP Form with Secondary Transition
  • OSPI Graduation Requirements, including links to download the High School and Beyond Plan in various languages
  • DDA: Developmental Disabilities Administration
  • DVR: Division of Vocational Rehabilitation
  • TVR: Tribal Vocational Rehabilitation, for Native Americans with disabilities
  • DSB: Department of Services for the Blind, for people with blindness or low vision
  • WAC 392-172A-03090, including description of Age of Majority rights that transfer to the student at age 18
  • PAVE article about Supported Decision Making
  • OSPI: The Office of Superintendent of Public Instruction has a family liaison for special education
  • OEO: The Office of the Educational Ombuds provides online resources and 1:1 support
  • OCR: The Office for Civil Rights can help with questions about equity and access
  • ESD: Nine Education Service Districts; each has a behavioral health navigator, and some are licensed to provide behavioral health services
  • Developmental Disabilities Ombuds
  • PAVE School to Adulthood Toolkit

Willa Decides to Get Vaccinated

Posted on by Nicol Walsh

The decision to be vaccinated or when to mask can be confusing for anyone but for and individual that experiences anxiety, Autism, depression, or an Intellectual or Developmental disability the confusion around these decisions can be even more difficult. Willa experiences both High Functioning Autism and severe anxiety and this is a look into how she and her friends came to their own decisions based on learning about vaccinations and masking then talking together on what they felt is right for themselves and safe for the others around them.

Below are two different versions depicting Willa’s comic page in video form.

Video #1 is a video without narration:

Video #2 includes narration:
*Please note, you can view Spanish subtitles by clicking on the cog on the lower right hand of the video, choose subtitles and then click on Spanish!

Comic page about Willa a character that decides to get vaccinated against the COVID-19 virus
Comic page about Willa a character that decides to get vaccinated against the COVID-19 virus in Spanish

Click to see the comic above in PDF form.

Full text for this comic page:

Willa: Guys, I’m kinda freaking out.

Willa’s Friend: Why Willa? What’s wrong?

Willa: The convention we’re going to has a vaxx card and mask policy and I’m unvaccinated.

Toni: WHAT?!

Willa: Getting vaccinated is scary…and the clinics are intimidating, and I’m scared of needles, and this vaccine came out much quicker than the others, so it’s probably rushed…

Willa’s Friend: Willa it’s important for you to get vaccinated. You have bad lungs, right? So, you’re extra at risk. And the reason why the vaccine came out so quickly in comparison to the others is because it got the funding to be mass produced quickly because it was a global issue. The same amount of time went into researching the COVID vaccine as any other vaccine. It’s completely safe.

Willa: Oh, Okay. That makes-

Toni: Wait, what about me? Why do I have to wear a mask? I’m vaccinated and it’ll ruin my cosplay!

Willa’s Friend: Actually Toni, COVID – 19 is so nasty that getting vaccinated doesn’t give you a 100% chance of not catching the virus. It makes you far less likely to catch it. And if you do, it makes your symptoms much less severe. So, it’s still important to mask to protect the more vulnerable people around you.

Toni: Oh!

Willa’s Friend: So, what are we going to do?

Willa: Get Vaccinated.

Toni: And wear a mask.

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.

Ready for Work: Vocational Rehabilitation Provides Guidance and Tools

Posted on by Nicol Walsh

A Brief Overview

  • Vocational rehabilitation (VR) is a federal right. Pre-Employment Transition Services (Pre-ETS) are one way to get support. Another is through 1:1 counseling and an Individualized Plan for Employment (IPE).
  • In Washington State, the Division of Vocational Rehabilitation (DVR) provides Pre-ETS and VR services. To seek support for a student still working toward a diploma, contact the DVR counselor assigned to the student’s school. DSHS maintains an interactive map: Find a School Transition Counselor.
  • Individuals with vision impairment and blindness are served through a separate vocational rehabilitation agency in Washington State, the Department of Services for the Blind (DSB).
  • After graduation, a student with a tribal affiliation may be eligible for support from Tribal Vocational Rehabilitation (TVR). Each TVR agency operates independently. Contact information is listed on a TVR website page, within DVR’s website.
  • Graduating seniors can seek DVR, TVR, or DSB services now!

Full Article

Teenagers and young adults with disabilities have additional considerations when deciding what life looks like after high school. The transition planning process begins in middle school, when all Washington State students work with counseling staff to begin their High School and Beyond Plan.

For students with disabilities, that lengthy planning process is enhanced when the Individualized Education Program (IEP) adds a Transition Plan, required by the school year when a student turns 16.

Vocational rehabilitation agencies can be part of that process and support a warm hand-off into the world of work. PAVE provides an infographic Transition Triangle with more about the way these services can wrap around a student as they move through school and beyond.

Vocational Rehabilitation services are a civil right

The right to vocational rehabilitation (VR) services is an aspect of Title 1 of the amended Rehabilitation Act of 1973. In 2014, the Rehabilitation Act, which guarantees equitable access to public spaces and programs, was further amended to include the Workforce Innovation and Opportunity Act (WIOA).

Pre-Employment Transition Services (Pre-ETS) were already an aspect of the Rehabilitation Act, but WIOA further defines Pre-ETS and requires that VR agencies set aside 15 percent of their funding to provide or arrange for the provision of Pre-ETS.

Note that Section 504 is also a feature of the Rehabilitation Act. Section 504 guarantees the right to accommodations for equitable access in public facilities and programs.

Section 504 is the basis for a student’s “504 Plan” that provides accommodations, modifications, and anti-discrimination measures for educational access. Section 504 protections aren’t limited to school: Like the Americans with Disabilities Act (ADA), Section 504 protects a person in higher education, work, and elsewhere throughout the lifespan. Students with IEPs also have Section 504 protections.

In other words, the accommodations from a student’s 504 Plan or IEP travel with them into higher education, work, and more. Section 504 and the ADA protect an individual with disabilities throughout their life. Denial of accommodation is considered discrimination under these civil rights laws.

In Washington State, vocational rehabilitation services are provided by the Division of Vocational Rehabilitation (DVR), which is housed within the Department of Social and Health Services (DSHS).

After graduation, a student with a tribal affiliation may be eligible for support from Tribal Vocational Rehabilitation (TVR). TVR agencies operate with sovereignty; contact information is included within DVR’s website, on a TVR website page.

Individuals with vision impairment and blindness are served through a separate vocational rehabilitation agency in Washington State, the Department of Services for the Blind (DSB).

Pre-ETS help students look ahead to their job options after graduation

Pre-Employment Transition Services (Pre-ETS) include job exploration, work-based learning, counseling about further educational options, workplace readiness and self-advocacy training.

Summer programs are available in some areas. To find the forms to enroll in Pre-ETS and for information about programs and regional counselors in your area, visit DVR’s website page called High School Transition.

Pre-ETS include five required services. Each service in this list is linked to a resource for further investigation. DVR counselors can provide additional resources to suit an individual’s unique circumstances:

  1. Job exploration counseling: career speakers, interest and ability inventories, investigation of labor market statistics and trends, and more
  2. Work-based learning experiences: in-school or after school opportunities, including internships, provided in an integrated environment to the maximum extent possible. According to the Brookings Institution, work-based learning is predictive of future job quality.
  3. Counseling on opportunities for further education: How to complete the Free Application for Federal Student Aid (FAFSA®) and how to locate disability resource centers at colleges and universities are part of college readiness.
  4. Workplace readiness training to develop social skills and independent living
  5. Instruction in self-advocacy, which may include peer mentoring, training in disability disclosure, and more

Order of Selection impacts access to 1:1 DVR support

The Individualized Plan for Employment (IPE) is a DVR program that is separate from Pre-Employment Transition Services (Pre-ETS). The IPE is supported 1:1, whereas pre-employment services are generally provided to groups of students.

DVR operates with Order of Selection when clients apply for individualized vocational rehabilitation (VR) counseling. Through Order of Selection, individuals with the highest needs for support are prioritized.

When developing an IPE, the client and counselor establish a goal for employment; the counselor provides coaching, logistical and sometimes financial support to help make that happen. The case remains open until the employment goal is met if the client remains meaningfully engaged in the process. IPE services might include educational support if further education is needed to achieve a job goal.

Can a student get Pre-ETS and 1:1 help?

A student might receive services through both programs—Pre-ETS and the Individualized Plan for Employment (IPE). However, families should be aware that there are some specific rules related to Order of Selection.

  • If a student is already participating in Pre-ETS, the student can apply for an IPE and Order of Selection will not impact the student’s ongoing engagement in Pre-ETS.
  • If the student applies for an IPE first and is put on a waiting list, then the student also will have to wait to begin Pre-ETS.
  • A student will have more access to DVR services by engaging with the Pre-ETS first and then considering whether to also apply for individualized support.

Resources for more information

Research shows that access to an array of collaborative services during high school improves post-secondary outcomes, especially when school staff and service providers get to know one another and there are “warm hand-offs” between individuals who develop trusted relationships with the young person, according to data shared by the National Technical Assistance Center on Transition (NTACT). Another place for data and detail about WIOA is the Workforce Innovation Technical Assistance Center (WINTAC).

Engagement with vocational rehabilitation services is supported by initiatives endorsed by the U.S. Department of Labor and its Office of Disability Employment Policy (ODEP). These federal agencies promote the concept of Employment First, a framework for systems change centered on the premise that all citizens, including individuals with significant disabilities, are capable of full participation in integrated employment and community life. 

The PACER Center, a Minnesota-based agency founded in 1977 to promote a “parents helping parents” philosophy, supports the National Parent Center on Transition and Employment, which offers a collection of materials with more information about vocational rehabilitation and how to benefit from pre-employment and employment services. Included in the PACER Center’s materials is a booklet for parents to help young people prepare for college and careers.

Washington’s DVR program provides a video about the school-to-work transition with young people talking about their experiences with the agency and how it helped.

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

Posted on by Nicol Walsh

A Brief Overview

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

Full Article

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

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

What does behavioral health mean?

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

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

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

Who is eligible for WISe services?

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

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

Five core areas are evaluated:

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

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

WISe requires public health insurance eligibility

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

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

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

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

Who is on the WISe team?

Team members include:

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

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

WISe requires family engagement

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

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

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

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

Does my child have to agree to WISe services?

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

What if WISe isn’t enough?

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

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

History, Advocacy, and Family Support

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

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

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

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

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

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

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

Parity laws, thoughtful language, stopping stigma

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

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

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

Bullying at School: Resources and the Rights of Students with Special Needs

Posted on by Nicol Walsh

A Brief Overview

  • OCR provides a fact sheet for parents about school legal obligations to address bullying. The fact sheet is available in Spanish.
  • According to OCR, students who are victims of bullying shall not be further victimized by the school’s response: “Any remedy should not burden the student who has been bullied.”
  • Families can ask the school for a form to file a “HIB Complaint.” HIB stands for Harassment, Intimidation, and Bullying.
  • OCR investigates complaints of disability discrimination at schools. OCR’s Complaint Assessment System provides a place to choose a language before filing a complaint. Contact OCR at 800-421-3481 (TDD: 800-877-8339).
  • Bullying protections apply to all students with disabilities, regardless of whether they are served through an Individualized Education Program (IEP) or a Section 504 Plan.
  • Failure to stop bullies and support a victimized student with disabilities is considered a denial of the student’s right to a Free Appropriate Public Education (FAPE). The U.S. Department of Education provides a Dear Colleague letter with guidance about bullying as a FAPE violation.
  • Find additional guidance at StopBullying.gov, which offers suggestions for parents and what teens can do.

Full Article

Students with disabilities who are bullied at school have legal protections, and schools have added responsibilities to ensure their safety and well-being. When acts of bullying involve discrimination based on disability, race, sex, or religion, federal agencies classify those acts as harassment.

The Office for Civil Rights (OCR) and the Department of Justice (DOJ) list the following as harassing behaviors:

  • Unwelcome conduct, such as verbal abuse, name calling, epithets, or slurs
  • Graphic or written statements
  • Threats
  • Physical assault
  • Other conduct that may be physically threatening, harmful, or humiliating

The PACER Center’s National Bullying Prevention Center, founded in 2006, provides this OCR and DOJ information and further explains that “bullying may also be considered harassment when the conduct is sufficiently serious that it interferes with (or limits) a student’s ability to participate in (or benefit from) the services, activities, or opportunities offered by a school, and it is based on a student’s disability.”

PACER Center provides letter templates to help parents write to the school and reminds families: “Data is important. Remember, if it is not in writing, it does not exist. Please be sure to keep a copy of the letter(s) for your records. These records can help parents keep a concise, accurate timeline of events. These sample letters are general in nature in order to serve all potential users.”

What does a school have to do when a child with a disability is bullied?

OCR provides a fact sheet for parents about school legal obligations to address bullying. The fact sheet is available in Spanish. Here are a school’s basic responsibilities:

  • Take immediate and appropriate action to investigate the issue and take necessary steps to stop the bullying and prevent it from recurring.
  • Interview targeted students, offending students, and witnesses, and maintain written documentation of the investigation.
  • Remedy the effects of bullying by further supporting a student with services through an Individualized Education Program (IEP) or Section 504 Plan.
  • Make sure the student who was bullied is helped and not further injured by actions taken in response. For example, the victim should not be suspended. According to OCR: “Any remedy should not burden the student who has been bullied.”

To learn more about student rights related to discipline, see PAVE’s article: What Parents Need to Know when Disability Impacts Behavior and Discipline at School.

What can a parent do?

Every school district has a process for filing a formal complaint related to harassment, intimidation and bullying (HIB). A parent or student can say, “I want to file a HIB complaint” and request the proper forms from the school.

Here are options for families:

  • Contact the HIB compliance officer in your school district.
  • Search online or request a HIB complaint form.
  • Request copies of the student handbook and the district’s written HIB policy.
  • If the act included a violation of the law, such as a physical assault, file a police report.
  • Request an emergency meeting of the IEP or Section 504 team to add supports for the student to ensure emotional and physical safety at school.
  • Ask the school district compliance officer for specific details—in writing—about who is responsible to stop the bullying, what will be done, and when. Ask how that officer will provide follow through and confirm accountability schoolwide. Write everything down.
  • Seek help from the Office for Civil Rights (OCR). The office investigates complaints of disability discrimination at schools. OCR’s Complaint Assessment System provides a place to choose your language before filing a complaint.
  • To learn more about federal civil rights laws or how to file a complaint, contact OCR at 800-421-3481 (TDD: 800-877-8339).

Rules in Washington State

The 2019 Legislature passed Substitute Senate Bill 5698, a Washington State law that prohibits harassment, intimidation, or bullying (HIB) in schools. The law requires school districts to have a formal HIB policy and a person designated to uphold the policy and distribute information among staff, students, and families.

The Washington HIB Prevention and Intervention Toolkit is accessible through the website of the Office of Superintendent of Public Instruction (OSPI). The toolkit includes guidance for students and families and includes a link to a spreadsheet that lists HIB compliance officers in each school district.

Washington State defines harassment, intimidation, or bullying (RCW 28A.300.285) as any intentional electronic, written, verbal, or physical act that:

  • Physically harms a student or damages the student’s property
  • Has the effect of substantially disrupting a student’s education
  • Is so severe, persistent, or pervasive that it creates an intimidating or threatening educational environment
  • Has the effect of substantially disrupting the orderly operation of the school

The Governor’s Office of the Education Ombuds (OEO) offers direct support to students and their families. OEO provides an online intake form and a phone option, with language interpretation available: 1-866-297-2597.

According to OEO, “Bullying and harassment can be a difficult topic for schools, families and students, but not talking about it can make it worse.” OEO provides information and tools to help families figure out who to talk to, how to raise informal and formal complaints, and how to help prevent and respond to bullying or harassment: “If you have questions, or want help understanding or addressing a concern, contact us.”

The state chapter of the American Civil Liberties Union (ACLU Washington) provides a downloadable guidebook on student rights. A section about harassment states: “Harassment is illegal when it is so severe, persistent, or pervasive that it creates an intimidating or hostile school environment and interferes with your education.”

How common is bullying of students with disabilities?

Data show that students with disabilities are bullied at least twice as frequently as their typical classmates. According to the PACER Center: “Although only ten U.S. studies have been conducted on the connection between bullying and developmental disabilities, all of these studies found that children with disabilities were two to three times more likely to be bullied than their nondisabled peers.”

According to Disability Scoop, about half of individuals with autism, intellectual disabilities, speech impairments and learning disabilities are bullied at school. The rate of bullying for typical students is about 10 percent.

Stopping stigma and ending discrimination require everyone to consider myths about bullying that often make things worse for a person who has been the victim of harassment, intimidation, or bullying. PACER Center’s National Bullying Prevention Center provides a document that describes myths about bullying.

For example, it’s never true that “some people deserve to be bullied.” Here’s a statement to dispel that myth: “No child’s behavior justifies being hurt or harmed in any manner. All children deserve to be treated with respect and consideration.”

It’s also never true that “bullying will make kids tougher.” In fact, “Bullying does not make someone tougher. Research has shown it often has the opposite effect and lowers a child’s sense of self-esteem and self-worth. Bullying often creates fear and increases anxiety for a child.”

Another myth is that telling a teacher about bullying is “tattling.” Adults can ensure that children understand the difference between tattling and telling: “Tattling is done to get someone in trouble. Telling is done to protect someone.” Keeping secrets about a bully gives the bully more power and hurts everyone.

Federal Guidance

The U.S. Department of Education maintains a website page with access to resources about student rights and anti-bullying protections. The department’s Office for Civil Rights (OCR) can accept complaints with overlapping civil rights concerns. For example, a complaint about bullying may also include aspects of racism and disability discrimination. OCR points out that bullying concerns that are not appropriately addressed can violate Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act (ADA):

“Under Section 504 and Title II, schools must address bullying and harassment that are based on a student’s disability and that interfere with or limit a student’s ability to participate in or benefit from the services, activities, or opportunities offered by a school. Further, if any bullying or harassing behavior interferes with the ability of a student with a disability to access educational services, the situation, if uncorrected, may constitute a FAPE violation. OCR works with other offices in the Department, as well as with the U.S. Department of Justice (DOJ), to address bullying and harassment of students with disabilities.”

Crisis Help

A child’s mental well-being may be impacted by bullying. If a student or family member needs someone to talk to in an emergent moment of crisis, these phone numbers may be helpful:

  • 988 Suicide & Crisis Lifeline
  • General Teen Talk line: 800-TLC-TEEN
  • Trevor Project (issues related to sexuality): 866-488-7386

Additional hotlines and text lines:  Suicide Hotlines.com

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.

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.

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. 

Map Your Future with Person-Centered Planning

Posted on by Nicol Walsh

A Brief Overview  

  • Person-Centered Planning (PCP) is a method for helping a person map out a future with intention and support.
  • Read on for more information about what Person-Centered Planning is like.

Full Article  

Everyone dreams about what they might do or become. Individuals with disabilities might need additional support to design the plans, set the goals and recruit help. The Person-Centered Planning (PCP) process is a tool that works like a Global Positioning System (GPS) to help a person figure out where they are starting and how to navigate to a planned destination.   

A PCP session is a gathering that can happen in a specific physical location, such as a school or a community center, or in a virtual space online. The people who get together might include family members, friends, teachers, vocational specialists, coaches—anyone who might help brainstorm ways to plan an enriched, full life for a person of honor.

The first step is to celebrate the gifts, talents, and dreams of the person. Then the group develops action steps to help that person move closer to their dreams and goals.  

Throughout the gathering, the attendees listen, ask questions, and draw pictures or write down words that contribute to the process. Respect for the person’s goals and wishes is a priority, and participants withhold judgment to honor the individual completely.  

Person-Centered Planning explores all areas of a person’s life. All people experience various times in their lives that are transitions. High-school graduation is a major example. Job changes, moving to a new home, entering or leaving a relationship: Those transitions happen for individuals with and without disabilities.

Individuals with disabilities have some additional transitions. For example, when a person leaves the special education system of public education at graduation or after age 21, there is a change in disability protections. A student receiving special education is protected by the Individuals with Disabilities Education Act (IDEA). In adult life, the right to accommodations and non-discrimination is protected solely by the Rehabilitation Act of 1973 (Section 504) and the Americans with Disabilities Act (ADA).

There are specific transitions that occur for individuals who qualify for support from the Developmental Disabilities Administration (DDA), which in Washington is part of the Department of Social and Health Services (DSHS). Employment and workforce training programs often are part of the transition from high school into what happens next.

During major life transitions, many service agencies focus on a person’s inabilities or deficits.  Person-Centered Planning, on the other hand, focuses on what’s positive and possible, based on the dreams and goals of the individual.

A PCP session includes a set of maps where information is collected in words and pictures. Here are some examples:

People in my Life     

This map names important people and their roles in concentric circles. These are people that the individual trusts for help and support and may include paid and unpaid supporters. Those who are closest to the person are in the circles closest to the center of the map.

Who am I?  My Story, My History    

This map is built during the session to describe the person’s story from birth up until the gathering. This map reflects what is most important to the individual. The facilitator might ask:

  • What parts of your life are important for people to know?   
  • What are some stories of your life that would be helpful for a coworker or a friend to know? 
  • Are you a sibling? A spouse? A parent?
  • How old are you? 
  • What activities do you participate in? 
  • Have you had any jobs?
  • Where do you live? Go to school?  
  • Do you have a medical concern that someone spending time with you might need to know about? 

 Likes and Dislikes  

The “Likes” list includes favorites, things that make the person happy. Favorite colors, foods, activities, places, people are listed. 

The “Dislikes” list includes the opposite of all those things and might also list triggers (bright lights, loud noises, angry voices, bullies) or other sensitivities.

What Works/ Doesn’t work 

The first part of this map asks: When learning a new activity or skill, what are steps and learning tools or activities that work for you? Answers might look like these examples: frequent breaks, accommodations, a written schedule, a list of duties, instructions in larger print, a preferred time of day to start something…. 

The second part asks: When learning a new activity or skill what activities do not work for you? Answers might resemble these examples:  waiting in line, too many instructions, too many people barking out orders, standing or sitting for too long, verbal instructions, unclear expectations….  

Gifts, Talents and Strengths  

This map asks several questions: 

  • What are you good at?
  • What can you do that is easy for you? 
  • What are your best qualities? 
  • What do people like about you?   

Examples for answers:  best smile, cleaning, giving, caring, natural dancer, very social, great with computers, good with numbers, great at sports, good listener, good with animals, etc.   

Dreams /Nightmares 

The My Dreams map asks: Where you would like to see yourself in a few years?  Follow-up questions:

  • What will you be doing?
  • What would your dream job be?  
  • Where are you living? 
  • Do you live on your own or with family or a roommate?  
  • How are you keeping in touch with your friends?   
  • What is an action you can take to move toward your dream or goals?    

The Nightmare Map asks:  What do you want to avoid?  Follow-up questions might include this one: Where do you not want to be in a few years? This is not to make the person feel bad but to make an out-loud statement about what the person doesn’t want to happen. This can include actions or thoughts that someone wants to avoid.  

Needs 

The Needs map asks:  What do you need help with to avoid the nightmare?  A follow up question might include: What areas do you need support with? Answers might look like these examples: budgeting money, learning to drive, training to ride the bus, cooking lessons, looking for a job. The goal is to recruit support to help the person stay away from the nightmare and work toward the dream.   

Action Steps  

A map that show Action Steps includes the specific help that will assist the individual in moving toward the dream. This chart typically details what needs to be done, who will do it, and by when. 

Example:    

Goal: To Write a Resume     
Who: Michele 
What: Call Mark to ask for help.  
By When: Next Monday, April 6, 2020 

This process involves many support people in the person’s life and identifies, in a self-directed way, areas where help is needed to meet personal goals. The gathering involves the important people in someone’s life because they can help through the process and step up to offer support for the action steps. 

How to get a Person-Centered Plan  

Here are places that might help you find a PCP facilitator in your area:  

  • Developmental Disabilities Administration (DDA) 
  • Division of Vocational Rehabilitation (DVR)
  • School District 

Here are a few additional places to seek information about Person-Centered Planning:  

Inclusion.com: All My Life’s a Circle  

Inclusion.com: The Path Method 

Video from PAVE, Tools 4 Success  

Informing Families.org  

Attention Students: Lead your own IEP meetings and take charge of your future

Posted on by Nicol Walsh

A Brief Overview

  • By the time you are 16 years old, the school is required to invite you to your IEP meetings. You can attend any time, and leading your own meeting is a great way to learn important skills.
  • If you need more help at school or aren’t learning what you need to learn, then your IEP might need some fixing. Your voice matters on the IEP team.
  • A website, I’m Determined.org, provides videos of students describing their goals. You can also print a goal-tracking worksheet from that website.
  • Read on to learn more about the parts of an IEP and how to get more involved in your own education.

Full Article

If you are a student with an Individualized Education Program (IEP), read this article to find out how you can be a leader on your IEP team. Your future is counting on you!

By the time you are 16 years old, the school is required to invite you to your IEP meetings. From that year on, your school program is matched to your long-term goals. It’s important to plan your time carefully so that every school day gets you closer to where you want to be when you are an adult. 

Learn to be a self-advocate

 An advocate (pronounced ad-vo-cut) is someone who asks for something in a public way. Public schools get money from the government, so they are considered public entities. When you ask the school to provide you with something that you need to succeed, then you are being a self-advocate.

The word advocate can also be an action word (a verb), but then it’s pronounced ad-vo-cate (rhymes with date). You advocate for yourself when you ask for what you need to succeed.

Here’s another way to use this hyphenated word: You can say that you “practice self-advocacy.” Leading your own IEP meeting is a great way to practice self-advocacy and develop important adult skills.

Your Transition Plan focuses on where you want to go

 The part of the IEP that focuses on your adult goals is called a Transition Plan. The Transition Plan is added to the IEP by the school year when you turn 16. The plan includes details about:

  • when you plan to graduate (you can stay in school through age 21 if your IEP goals require more time)
  • what jobs you might choose
  • whether college is part of your plans
  • what lifestyle you imagine for yourself (will you drive, cook, shop, live alone?)
  • how school is getting you ready for all of that

The Transition Plan is all about you and your future. You can start taking charge of your future by going to your IEP meetings. You may want to lead all or part of the meeting, and you have that right.

The law says it’s all about you

Your rights as a student with an IEP are part of a federal law called the Individuals with Disabilities Education Act (IDEA). The IDEA says that schools must include family members and students on the IEP team. If you don’t play on the team, you can’t win the game, right? This is more important than a game—it’s Your Life!

The IDEA is a unique law because it says you get what you need in order to access school and learning. Getting an education that is specially designed just for you is called an entitlement. What you are entitled to is called FAPE, which means Free Appropriate Public Education.

You can become a leader on your IEP team by learning more about FAPE and how to talk about what it means to you. Public education is free for all school-age students in the United States, but consider this question: What makes your education appropriate?

Here are some questions to help you think and talk about FAPE:

  • What is it like to have a disability?
  • What about your disability makes school hard?
  • What do you need at school that helps you learn?
  • Are you getting better and better at the skills you need to be good at?
  • Are your teachers helping you see what you do well?

If you are learning important skills at school, and your learning is helping you build on your strengths, then you are probably getting FAPE. If you need more help or aren’t learning the skills that you need to move forward, then your IEP might need some fixing. Keep in mind that the school is responsible to provide you with FAPE. You have the right to ask for FAPE.

Learn what your IEP can do for you

Here’s a starter kit to help you understand what your IEP says and how you can ask for changes. When you go to your IEP meeting, you have the right to ask the teachers and school administrators to help you read and understand your IEP.

These are some important parts of an IEP:

  • Category of Disability: This is on the “cover page” of the IEP document. It lists the type of disability that best describes why you need individualized help at school. You should know this category so you can understand how and why teachers are supposed to help you.
  • The Present Levels of Performance: This is the long section at the beginning of the IEP that describes how you are doing and what the school is helping you work on. The beginning of this section lists what you are good at. Make sure that section is complete so you can be sure the teachers help you build on your strengths.
  • Goals: When you qualified for an IEP, the school did an evaluation. You showed that you needed to learn certain things with instructions designed just for you. To help you learn, the teachers provide Specially Designed Instruction. They keep track of your progress toward specific goals in each area of learning. You can learn what your goals are and help track your progress. A website, I’m Determined.org, provides videos of students describing their goals. You can also print a goal-tracking worksheet from that website.
  • Accommodations: You can ask for what you need to help you learn in all the different classrooms and places where you spend the school day. Do you learn better if you sit in a specific part of the classroom, for example, or if you have a certain type of chair? Do you need to be able to take breaks? Do you do better on tests if you take them in a small, quiet space instead of the regular classroom? Do you need shorter assignments, so you don’t get overwhelmed? Helping your teachers know how to help you is part of your job as an IEP team member.

Get Ready for Your IEP Meeting

You can get ready for your IEP meeting by looking over the IEP document.  You may want to ask a family member or a teacher to help you read through the document. If you don’t understand what’s in your IEP, plan to ask questions at the meeting.

PAVE provides a worksheet to help you prepare for your meeting. It’s called a Student Input Form. You can use this worksheet to make a handout for the meeting or just to start thinking about things you might want to say. If you don’t want to make a handout, you might draw pictures or make a video to share your ideas.

These sentence starters might help you begin:

  • I enjoy…
  • I learn best when…
  • I’m good at…
  • It’s hard for me when…
  • I want more help in these areas…
  • I like school the most when …
  • Teachers are helpful when they…
  • I want to learn more about …
  • It would be great if…

You may want to think about your disability and how it affects your schoolwork. You could work on a sentence or draw a picture to help the teachers understand something that is hard for you. These might be the parts of a sentence that you can personalize:

  • My disability in the area of …
  • makes school difficult because…

Your handout can include a list of what you want to talk about at the meeting. Here are a few ideas, but your options are unlimited:

  • A favorite class, teacher or subject in school?
  • A time during the school day that is hard for you?
  • Your IEP goals?
  • Something that helps you feel comfortable and do well?
  • Something you want to change in your school schedule or program?
  • Graduation requirements and when you plan to graduate?
  • Your High School and Beyond Plan? (see information below)
  • Anything else that’s important to you?

High School and Beyond Plan

Maybe you started talking about what you might do after graduation when you were in middle school. Washington State public schools are required to help all students begin a High School and Beyond Plan by 8th grade. Ask a teacher, a school counselor and/or your parents if you haven’t started one of those: It’s required so you can graduate from high school.

It’s never too soon to think about what you want to do in the future. When you start building an IEP Transition Plan, it’s critical to think and talk through your ideas and how you see yourself moving forward. Here are some starter questions: 

  1. Where am I now? (strengths, interests, abilities)
  2. Where do I want to go? (aspirations, dreams, expectations)
  3. How do I get there? (goals, courses, activities, helpers, accommodations)

Here are some additional questions to help you plan:

Jobs, Trades, & Work

  • What jobs would be a good fit?
  • What training and/or supports will you need?
  • Does your IEP include community work experience?

Education after high school

  • Do your personal goals include college or technical school?
  • What accommodations will you need?
  • Have you contacted Disability Support Services on campus?

Living arrangements

  • Will you live with family, a friend or on your own?
  • How will you cook, clean, shop, & get around town?
  • Does your IEP have goals for Independent living?

Community experiences

  • What will you do for fun?
  • Will you join a club or support group?
  • How will you make friends and keep in touch?

It’s never too soon to plan ahead!

Setting goals and making some plans now will help your school and family help you make sure you’ve got the right class credits, skills training and support to make that shift out of high school easier.

Being a leader at your IEP meeting is a great way to build skills for self-advocacy and self-determination, which is another great two-part word to learn. Self-determination means you make choices to take control of your life. At your IEP meeting, you can practice describing what helps you or what makes your life hard. You get to talk about what you do well and any projects or ideas that you get excited about. In short, you get to design your education so that it supports your plans to design your own adult life.

Here are links to more ideas and tools to help you get involved in your own future planning:

The Center for Change in Transition Services has a toolkit for youth

Youthhood.org also has resources designed just for you