Tag: Youth

Mental Health Education and Support at School can be Critical

Posted on by Nicol Walsh

A Brief Overview

  • Alarming statistics indicate the pandemic 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.

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

Posted on by Nicol Walsh

You can print this toolkit as a PDF! Click to download.

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

For a visual map of the ages and stages of high school transition process, check out PAVE’s infographic: What’s Next? High School Transition Planning Timeline.

Learn the Words

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

Pandemic Impacts

A student receiving special education services has a right to education through age 21, if needed, to meet requirements and achieve readiness. Some IEP teams may determine that because of COVID-19 a student who has not yet received a diploma needs to stay in school beyond 21 to access Recovery Services, a term developed by the Office of Superintendent of Public Instruction (OSPI) to help students recover learning losses related to the pandemic. Decisions about Recovery Services are made by IEP teams, which include parents and students.

OSPI provides a Family Information Session on Transition Recovery, available on YouTube from June 2, 2021. The presentation slides are also available online, and families may call OSPI at 360-725-6075 with questions about Transition Recovery Services.

Earning a Diploma

To earn a high-school diploma in Washington State, students must:

OSPI provides a two-page summary of graduation requirements to support families and students. Included is this statement: “Students who receive special education services under an Individualized Education Program (IEP), also have an IEP Transition Plan, which begins by the school year when a student turns 16 or sooner. The HSBP is required to align with their IEP Transition Plan to ensure a robust planning process toward post-high school goals.”

Various state agencies collaborated to provide a guidebook: Guidelines for Aligning High School & Beyond Plans (HSBP) and IEP Transition Plans.

The state’s 2019 legislature changed graduation requirements (HB 1599). Students may earn a Certificate of Academic Achievement (CAA) or a Certificate of Individual Achievement (CIA) to graduate. How a student earns a CIA is determined by their IEP team.

Students with disabilities seeking a diploma through General Educational Development (GED) testing may be eligible for testing accommodations. A website called passged.com lists a variety of disability conditions that might make a person eligible for testing supports.

Commencement Access

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

The Big Picture

The right to a Free Appropriate Public Education (FAPE) includes the right to school-based services that prepare a young person with a disability for adult life. PAVE provides an overview of transition planning in a two-part video series. Part 1 includes foundational information about the rights of students with disabilities, with some content related to COVID-19. Part 2 provides key information about tools for students moving toward graduation and beyond.

Here are links to two videos, an infographic, and an article:

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

Student Self-Advocacy

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

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

Student Rights after High School

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

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

Universal Design supports everyone

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

Agencies that can help

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

DVR’s website includes a section with information about Tribal Vocational Rehabilitation (TVR), which is available for people with tribal affiliations in some areas of the state. Each TVR program operates independently. Note that some TVR programs list service areas by county but that sovereign lands are not bound by county lines. Contact each agency for complete information about program access, service area, and eligibility.

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

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

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

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

Graduation’s over: Why is school calling?

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

Benefits Planning

A consideration for many families of youth with disabilities is whether lifelong benefits are needed. Applying for social security just past the young person’s 18th birthday creates a pathway toward a cash benefit and enables the young person to access Medicaid (public health insurance) and various programs that depend on Medicaid eligibility.

The Washington Initiative for Supported Employment (gowise.org) provides benefit planning information and resources through a program called BenefitU.

When a person 18 or older has a disability, family members may want to stay involved in helping them make decisions. Supported Decision Making (SDM) is the formal name for one legal option. Washington law (Chapter 11.130 in the Revised Code of Washington) includes Supported Decision Making as an option under the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act. The law changed in 2020 when the state passed Senate Bill 6287. The changes took effect Jan. 1, 2022. PAVE’s article about Supported Decision Making has more information about this and other options for families to support an adult with a disability.

Click to download this Transition Toolkit

Transition Triangle

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

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

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

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

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

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

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

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

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

For direct assistance from PAVE, click Get Help. The Office of Superintendent of Public Instruction (OSPI) provides information about graduation requirements for a student in Washington State

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

Posted on by Nicol Walsh

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

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

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

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

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

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.

The U.S. Department of Education maintains an online blog called Homeroom. An article, Keeping Students with Disabilities Safe from Bullying, states that students will disabilities are particularly vulnerable because of physical issues, challenges with social skills and intolerant environments:

“Students who are targets of bullying are more likely to experience lower academic achievement, higher truancy rates, feelings of alienation, poor peer relationships, loneliness, and depression. We must do everything we can to ensure that our schools are safe and positive learning environments—where all students can learn.”

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:

  • National Suicide Prevention Lifeline: 800-273-8255 (988 coming in summer 2022)
  • 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.