Possible Accommodations for SAT and ACT Entrance Exams

Posted on August 14, 2023August 14, 2023 by Nicol Walsh

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Download Possible Accommodations for SAT and ACT Entrance Exams

Extended time

Only if the disability causes them to work more slowly than others
May not be necessary for every section
If necessary for reading, will be provided for every section

Reading and seeing accommodations

Large-print test book
Braille with raised line drawings
Tactile graphics with a human reader or prerecorded audio
Assistive technology, such as text-to-speech

Recording responses

Large-print answer sheet
Recording answers accommodations
Computer for word processing for essay and short answer only
Record answers in their test books
Scribe to record both multiple-choice and essay or short answer

Use of four-function calculator

Assistive technology

Must request each device or software separately
Electronic magnifying machines
Text-to-speech (screen readers) and speech-to-text
Electronic/talking calculators

Breaks

Extended time (10 minutes)
Additional (5 minutes each)

Other accommodations

Signing or orally presenting instructors
Printed copy of verbal instructions
Colored overlays
Preferential seating
Wheelchair accessibility
School-based setting
Permission for food, drink, or medication
Permission to test blood sugar and access to testing supplies

COVID – 19 Updates:

Check the for updates related to COVID-19 and guidelines for participating in testing
Check the test center’s website for any additional or specific entry requirements, including College Board or local public health guidelines
If students don’t feel well on test day, they should contact Customer Service immediately to set a new test date.

Source:

Accommodations and English Learner Supports for Educators

Accommodations on College Board Exams

Disclaimer: All content is for informational purposes only. The information on this page is not a substitute for legal advice. When it comes to the law and policy matter, please consult an attorney or advocate on your child’s behalf.

How to Decide on a Post-Secondary Program

Posted on August 14, 2023August 14, 2023 by Nicol Walsh

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Download How to Decide on a Post-Secondary Program

Talk with your parents and/or guardians:

What are my abilities and strengths?
How does my disability affect my learning and ability to show what I know on tests?
What accommodations do I need to be successful?
What postsecondary education or training programs do my teachers and school counselors recommend for my areas of interest?

Talk together about your concerns with Student Support Services / Disability Office

A school’s location could deter your child, even if the program is perfect. Where is the school located and does that school setting (urban, suburban, or rural) meet your student’s needs? If they cannot live independently, what is the distance from home?
Does the student/instructor ratio ensure your student can access office hours with their instructor as needed?
Not all programs provide the same accommodations, and colleges do not make modifications to alter academic requirements. Accommodations are what make it possible for your student to access the curriculum. An inaccessible program would be a waste of time and money.
Are the housing options accessible for your student’s individual needs?
Will they require someone to assist with self-help (like bathing), managing their medications and medical treatment, or nutrition and hygiene needs (like laundry, washing dishes, cooking)?
Do they have a service or emotional support animal?

* High school counselors and teachers are resources for connecting with colleges and training programs. Many schools have “College Fairs.”

*This resource describes a typical process to ask for accommodations, and also lists key questions to ask of the Disability Office: How to Request Disability Supports in College

*You can also call postsecondary school admission officers to request brochures and fact sheets about the school and its programs. Schools almost always include information about their programs online.

Source: PACER’s National Parent Center on Transition and Employment – Preparing for Postsecondary Education

How to Decide on a Post-Secondary Program Worksheet

Posted on August 14, 2023August 14, 2023 by Nicol Walsh

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Download How to Decide on a Post-Secondary Program Worksheet

Fill in your answers to the questions.

Talk With Each Other

What are my abilities?
What are my strengths?
How does my disability affect my learning and ability to show what I know on tests?
What accommodations do I need to be successful?
What postsecondary education or training programs do my teachers and school counselors recommend for my areas of interest?

Talk Together About Your Concerns With Student Support Services

Where is the school located and does that school setting (urban, suburban, or rural) meet my needs?
If I cannot live independently, what is the distance from home?
Does the student/instructor ratio ensure I can access office hours with my instructor(s) as needed?

Not all programs provide the same accommodations, and colleges do not make modifications to alter academic requirements.

Does the program offer the accommodations I need to be successful?
Are the housing options accessible for my individual needs?

Do I require someone to assist with:

Self-help (like bathing)?
Managing my medications and medical treatments?
Nutrition and hygiene needs (laundry, washing dishes, cooking?)
Do I have a service animal?

College Experience Terms: Non Degree Post-Secondary Transition Programs

Posted on August 14, 2023August 14, 2023 by Nicol Walsh

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Download College Experience Terms

These are some terms for post-secondary education programs that are unique to those supporting students with intellectual disabilities.

Click on each term for more information.

Transition and postsecondary education program for students with intellectual disability (TPSID)

A federally funded model demonstration grant that allows schools to create and/or further develop their program.
Programs receiving the TPSID grant are more likely to have accommodations to support students with IDD because they’re literally being paid to create and expand their programs.
Students attending schools that are CTP approved can apply federal funding from the Department of Education to pay for non-degree programs.
Some programs may use the acronym “IPSE” to indicate they are focused on supporting students with IDD.

Inclusive post-secondary education (IPSE)

Sometimes used to refer to college programs for students with intellectual disability; also referred to as inclusive higher education programs.

Comprehensive transition program (CTP)

Approved by the U.S. Department of Education and eligible for federal student aid.

*If a student has an IEP and they intend to participate in a non-degree college program, their transition goals don’t have to be focused on a major to help them prepare for higher learning.

Requesting Accommodations in Post-Secondary Education

Posted on August 14, 2023August 17, 2023 by Nicol Walsh

The following information is part of the college readiness workbook. You can download this and other parts of this workbook for your personal use. Each document is fillable.

Download Requesting Accommodations in Post-Secondary Education

Post-secondary schools each set their own procedures and requirements to request accommodations. Here are some key points and tips on effective ways to request accommodations.

Accessibility is one important way a post-secondary school can show it is inclusive. Over the last few years, many colleges and universities have been highlighting accessibility and the services they offer students with disabilities. This may help a student to decide to apply to a particular school and make it easier to find out how to apply for accommodations at a school they have selected. (Check out the College Readiness Workbook created by PAVE to see resources for post-secondary program selection.)

To request accommodations:

Begin by locating the campus disability services office on the school website. Type “disability” into the search bar. Often, the first result will be the office that provides accommodation for students with disabilities.

Name of Office: Phone:

Call the office to make an appointment and request any forms you can complete beforehand and how to obtain them (such as by mail or downloading from the school website). Make your appointment well before classes begin. It may take 6-8 weeks to process your request, so start early to have accommodations in place by the time you need them.

Note that some accommodations, such as Braille or interpreter services, may take more time than others to arrange.
If you have an IEP, note that transition planning is mandatory beginning at age 16. Parts of a transition plan can include selecting a post-secondary program, deciding which accommodations you will need, and starting the request process on time.

Appointment Date: Time: Contact:

Requirements to document a disability range widely from one post-secondary program to another. It’s important to reach out to disability services to learn their specific requirements, and if possible, talk with other students who have experience with school services. DREAM (Disability Rights, Education, Activism, & Mentoring) Group has lists of student organizations to contact for this type of information.

Schools may ask for documentation from a medical or other therapeutic provider, or disability services may be able to use a student’s current IEP or 504 plan.

3. You will need to submit proof of a disability that impacts activities of daily living, to meet the requirements to provide accommodations under Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act. The proof may be a form letter for a medical or therapeutic provider to fill out, or it may be notes from such a provider. It may be your most recent IEP or 504 plan. It must be specific to the condition or conditions for which accommodation is requested.

Be aware that a disability which is ‘mitigated’, that is, made less of an impairment by a device, an accommodation, or any other strategy for coping does not change a student’s rights under the ADA or Section 504.

The same is true for a condition that ‘comes and goes. For example, bipolar disorder, an autoimmune disorder, a gastrointestinal condition, or similar conditions in which symptoms are present at some times and not at others.

From a medical or therapeutic provider, schools often require that documentation must be in writing, must be current within three years, and include the following where appropriate:
- A description of the student’s disability and how he/she is affected educationally by the presence of the disabling condition.
- Identification of any tests or assessments administered to the student.
- Suggestions for educational accommodations that will provide equal access to programs, services, and activities.

4. Documentation submitted to the college should provide clear evidence of need and demonstrate a history of use of the accommodations requested. While a high school IEP or 504 plan does not “transfer” to the postsecondary program, the disability office may accept these plans as proof of disability or use them as guidance in determining appropriate accommodations.

Collect and check the documentation you need:

Most recent Individualized Education Program (IEP)
Most recent 504 plan, Accommodations Plan, or Service Plan
Most recent educational evaluations
Diagnosis and/or treatment plan
Medical or professional service providers notes, including suggested accommodations (colleges may have a form for this)
Make copies of the completed request forms for your home file
Other

Remember to check the school website for any disability-specific or need-specific documentation requirements. For example, a student may be required to provide the results of a hearing assessment with expected progression or stability of the hearing loss, when requesting accommodations for a hearing disability.

5. Meet with the disability office staff to request and discuss accommodations. Complete the How to Decide on a Post-Secondary Program worksheet to help you prepare for this meeting, including organizing your questions and concerns.

Write down any additional questions to help you remember during the meeting.

6. When you receive written notice of the decision regarding your eligibility for accommodations and the list of approved accommodations, make enough copies to share with your instructors and keep a copy with you in class, in the event of a substitute instructor. Put the original in your home file for safekeeping.

Understand the limits of what the school is providing for assistive technology. For instance, many schools limit the loan of portable screen-readers to specified uses or time frames. Students may have to provide their own equipment or software outside those limits.

It is the student’s responsibility to give the eligibility notice with specific accommodations to each instructor every semester.

7. If accommodations become ineffective or you are not receiving approved accommodations, contact the disability services office immediately for assistance.

8. All accommodations are provided on a case-by-case basis. If your request for accommodations is denied, contact the disability services office to determine the process for appeal and equitable resolution.

9. Once at college, this resources may help:
So, you’re in college, now what next?
College Readiness Workbook

Additional Resources:

So, you’re in college, now what next?
College Readiness Workbook (contains this article and many other helpful resources)

Sources:

How to Request Disability Supports in College

Tacoma Community College, Tacoma, WA Access Services

Five Tips for a Smooth PCS

Posted on May 18, 2023June 11, 2024 by Nicol Walsh

Download the PCS Essential Contact Form

Military families are likely to switch schools more often than other families. This can require learning new rules and finding new resources. To help plan, here are five valuable tips for a smooth PCS (permanent change of station, which is the military language for “relocation”) with a special educational or medical needs child.

Tip 1: Organize your files.

Records are critical for planning and stability. Accessing records once you have left a duty station is far more complex than getting copies to take with you. Keeping track of your child’s records can make the transition to a new assignment far easier. With your child’s information and records organized and up to date, you can quickly find any new trends, needs, or program changes to consider when you PCS.

Save copies of evaluations, educational plans and programs, work samples, and behavior plans.
Monitor regression by comparing student work samples and grades before, during, and after your PCS.
Note what has worked to support your student through previous transitions and share these successes with the Individualized Family Service Plan (IFSP), Individualized Education Program (IEP), or Section 504 team.

If your student comes from a Department of Defense Education Activity (DoDEA) school, you may also have records and evaluations from a Student Support Team (SST) or Case Study Committee (CSC).

Tip 2: Know your resources.

When you are moving to a new place, it is important to know who can help you. Contact the School Liaison and Exceptional Family Member Program (EFMP) family service office as soon as possible. They have useful information about things that can support your child’s health, well-being, and quality of life, like assignment locations, schools, housing, and other essentials. In your new state, you can also reach out to the Family Voices program. They can help you apply for public benefits such as extra money (SSI) and healthcare (Medicaid). It is also good to know your child’s rights as a military student when switching schools between states. Learn about the protections under the Interstate Compact on Educational Opportunity for Military Children and use this Step-by-Step Checklist for resolving school issues with the Interstate Compact.

Tip 3: Keep open lines of communication.

Building strong communication links with your child’s teachers and other school officials can be critical. Remember to keep track of notes, emails, texts, and conversations. Always follow up on agreements with a note summarizing what was agreed to and any timelines. Building a solid relationship with your child’s teachers will help you address potential difficulties while they are minor issues and build trust among all team members. Discuss all the efforts that are helping your child. Keep communication lines open by responding promptly and respectfully, and reach out to school staff with positive feedback, as well as for problem-solving concerns.

Tip 4: Ask questions.

The Individualized Family Service Plan (IFSP) and Individualized Education Program (IEP), or Section 504 Accommodations Plan, are the heart of how your child will receive services, accommodations, and modifications tailored to their unique needs. Never feel that you shouldn’t ask questions. Terms can change from place to place, but what the service includes will follow strict guidelines set up through the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). Since you will be the single consistent factor in your child’s educational career, the more you know, the better you can collaborate and plan within the IEP or 504 teams. Locate and contact the Parent Training and Information (PTI) center in your new state to assist you in navigating this process. Students and families in Washington State may contact PAVE for one-on-one support, information, and training through our Get Help request form.

Tip 5: Include your student.

All people need the ability to understand and communicate their needs and wants. The ultimate goal for our children is to help them become self-advocates to the best extent they are capable and comfortable. Providing them with tools early and on an ongoing basis will help them plan for their future. In the long run, it will help them to be the driver of services they need and want.

These are just a few tips on navigating the special education and medical systems when PCS’ing. If you want to learn more, register for an upcoming STOMP workshop or webinar.

Traumatic Brain Injury in Youth

Posted on May 18, 2023March 21, 2024 by Nicol Walsh

A Brief Overview

A traumatic brain injury (TBI) is an injury that affects how the brain works.
Approximately 1.7 million people receive traumatic brain injuries every year. Of children 0-19 years old, TBI results in 631,146 trips to the emergency room annually, 35,994 hospitalizations, and nearly 6,169 deaths.
Children have the highest rate of emergency department visits for traumatic brain (TBI) injury of all age groups. TBI affects children differently than adults.
Although TBI is quite common, many medical and education professionals may not realize that some difficulties can be caused by a childhood TBI. Often, students with TBI are thought to have a learning disability, emotional disturbance, or an intellectual disability. As a result, they may not receive the type of educational help and support really needed.
Students with TBI who are not eligible for special education might be eligible for a Section 504 plan.
TBI is a category of eligibility for special education under the Individuals with Disabilities Education Act (IDEA) and the Washington State Administrative Code (WAC)
Washington law requires evaluation referrals in writing. The state provides a form for referrals, downloadable from a website page titled, Making a Referral for Special Education. The person making the referral can use the form or any other format for their written request.
PAVE provides a Sample Letter to Request Evaluation.

Full Article

A traumatic brain injury (TBI) is an injury that affects how the brain works. TBI can affect people of all ages and backgrounds. The exact definition of TBI, according to special education law, is referenced later. This injury can change how the person thinks, behaves, and moves. A traumatic brain injury can also change how a student learns and behaves in school. The term TBI is used for head injuries that can cause changes in one or more areas, such as:

thinking and reasoning,
understanding words,
remembering things,
paying attention,
solving problems,
thinking abstractly,
talking,
behaving,
walking and other physical activities,
seeing and/or hearing, and
learning.

The term TBI is not used for a person who is born with a brain injury or for brain injuries that happen during birth.

How is TBI Defined?

The definition of TBI below comes from the Individuals with Disabilities Education Act (IDEA). The IDEA is the federal law that guides how schools provide special education and related services to children and youth with disabilities.

IDEA’s Definition of TBI

The Individuals with Disabilities Education Act (IDEA) defines traumatic brain injury as

“…an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a student’s educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psycho-social behavior; physical functions; information processing; and speech. The term does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma.” [34 Code of Federal Regulations §300.8(c)(12)]

Washington State’s Definition of TBI

“Traumatic brain injury means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a student’s educational performance. Traumatic brain injury applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. Traumatic brain injury does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma.” (WAC 392-172A-01035)

What Are the Signs of Traumatic Brain Injury?

The signs of brain injury can be quite different depending on where the brain is injured and how severely. Students with TBI may have one or more difficulties, including:

Physical disabilities: Individuals with TBI may have problems speaking, seeing, hearing, and using their other senses. They may have headaches and feel tired a lot. They may also have trouble with skills such as writing or drawing. Their muscles may suddenly contract or tighten (this is called spasticity). They may also have seizures. Their balance and walking may also be affected. They may be partly or completely paralyzed on one side of the body, or both sides.

Difficulties with thinking: Because the brain has been injured, it is common that the person’s ability to use the brain changes. For example, students with TBI may have trouble with short-term memory (being able to remember something from one minute to the next, like what the teacher just said). They may also have trouble with their long-term memory (being able to remember information from a while ago, like facts learned last month). People with TBI may have trouble concentrating and only be able to focus their attention for a brief time. They may think slowly. They may have trouble talking and listening to others. They may also have difficulty with reading and writing, planning, understanding the order in which events happen (called sequencing), and judgment.

Social, behavioral, or emotional problems: These difficulties may include sudden changes in mood, anxiety, and depression. Students with TBI may have trouble relating to others. They may be restless and may laugh or cry a lot. They may not have much motivation or much control over their emotions.

A student with TBI may not have all the above difficulties. Brain injuries can range from mild to severe, and so can the changes that result from the injury. This means that it is hard to predict how an individual will recover from the injury. Early and ongoing help can make an enormous difference in how the student recovers. This help can include physical or occupational therapy, counseling, and special education.

It is also important to know that, as children and youth grow and develop, parents and teachers may notice new problems. This is because, as young people grow, they are expected to use their brain in new and different ways. The damage to the brain from the earlier injury can make it hard for them to learn new skills that come with getting older. Sometimes families and teachers may not even realize that the student’s difficulty comes from the earlier injury.

How to Access Support

If a student is having a tough time at school and has a known or suspected disability, the school evaluates to see if the student qualifies for special education. A student is protected in their right to be evaluated by the Child Find Mandate, which is part of the federal Individuals with Disabilities Education Act (IDEA). if they do have a disability and, because of the disability, need special services under IDEA. These services can include:

Early Supports for Infants and Toddlers (ESIT): A system of family centered services to support infants and toddlers with disabilities (before their 3rd birthday).

Special education and related services: Services available through the public school system for school-aged children and youth, including preschoolers (ages 3-21). It is important to remember that the IEP is intended to be flexible. It can be changed as the family, school, and the student learns more about what support and services are needed at school.

If the student is not eligible for special education, a Section 504 Plan may help. Under Section 504, students with disabilities can access the accommodations, aids, and services they need to access and benefit from education. It also protects students from discrimination based on disability.

When students with TBI return to school, their educational and emotional needs are often quite different than before the injury. Their disability has happened suddenly and traumatically. They can often remember how they were before the brain injury. This can bring on many emotional and social changes which may result in mental and/or behavioral health needs. The student’s family, friends, and teachers also recall what the student was like before the injury. These and other people in the student’s life may have trouble changing or adjusting their expectations of the student. Therefore, it is important to plan carefully for the return to school.

Tips for Families and Caregivers

Learn about TBI. The more you know, the more you can help yourself and your student.
Work with the medical team to understand your loved one’s injury and treatment plan. Ask questions. Share what you know or think. Make suggestions.
Keep track of your loved one’s treatment. A 3-ring binder or a box can help you store this history. As your youth recovers, you may meet with many doctors, nurses, and others. Write down what they say. Put any paperwork they give you in the notebook or place it in a box.
Plan for your student’s return to school after the injury. Contact the school. Ask the principal about an evaluation for special education or a Section 504 plan. You may also consider asking the medical team to share information with the school.
Talk to other families whose loved ones have TBI.
Stay connected with your student’s teacher. Tell the teacher about how your student is doing at home. Ask how your student is doing in school.
Sometimes students who do not qualify for the IEP will qualify for accommodations and other support through a Section 504 Plan. PAVE has an article about Section 504, which provides an individual with protections throughout the lifespan.
Protections against bullying and discriminatory discipline are aspects of Section 504. Watch PAVE’s video, Behavioral Health and School: Key Information for Families.

Help from PAVE

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

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.
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 TBI:

The Center on Brain Injury Research and Training
Department of Health and Human Services
University of Washington TBI Model System
Center for Disease Control and Prevention : Report to Congress on the Management of TBI in Children

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.
Department of Health and Human Services (DSHS) has a link to Washington TBI Support Groups.
Brain Injury Association of America works to create a better future through brain injury prevention, research, education, and advocacy.

Disability and Sexual Health Education

Posted on May 18, 2023May 19, 2023 by Nicol Walsh

A Brief Overview

Sexual education is a legal requirement in Washington State. Read on for information about what the state requires and resources for supporting a child to learn developmentally appropriate information related to health and sexuality.
The state provides a Sexual Violence Prevention website page with information about work underway toward the prevention of child sexual abuse.
Helping young people talk about sexual consent can support students in learning to make healthy choices that serve them for a lifetime. Rooted in Rights of Washington offers a step-by-step guide for talking about consent with youth with disabilities.
May is Sex Ed for All Month. Sex Ed for All Month is an opportunity to raise awareness and call for real investment in sex education in schools and communities across the country. Sex Ed for All Month is coordinated by the Sex Education Collaborative, in collaboration with a national coalition of sexual and reproductive health, rights, and justice organizations committed to ensuring equitable and accessible sex education for all young people nationwide. For resources, visit The Healthy Teen Network
For a library of resources, visit the Parent Center Hub: Sexuality Education for Students with Disabilities.

Full Article

Parents or guardians are the first and primary sexual health educators of children. What parents and caregivers believe, say, and do can have a powerful influence on the development of healthy sexuality in children. This article provides resources to support healthy sexuality for families and youth, including standards and instruction that align public schools with state laws.

Washington state law requires schools to provide education about the life-threatening dangers of HIV/AIDS, its transmission, and its prevention. HIV/AIDS prevention education is required to begin by grade 5 and is provided annually, in accordance with the AIDS Omnibus Act (RCW 28A.230.070). The state’s model for providing this education is called the KNOW Curriculum, developed for grades 5-8.

The topic of child sexual abuse prevention is addressed by Erin’s Law (HB 1539), passed by the WA legislature in 2018. The bill named the Office of Superintendent of Public Instruction (OSPI) as the lead agency tasked with reviewing curricula and assisting the Department of Children, Youth, and Families (DCYF) with developing a coordinated program for the prevention of child sexual abuse in grades K-12. OSPI provides a Sexual Violence Prevention website page that includes information about work underway.

Inclusive comprehensive sexual health education (CSHE) is required in Washington schools, beginning with the 2022-23 school year. Planning and implementation has been underway since 2020. Instruction must be consistent with Health Education K-12 Learning Standards, which provide a framework for comprehensive instruction, and the provisions of RCW 28A.300.475.

For students in grades 4-12, CSHE is defined in the law as “recurring instruction in human development and reproduction that is medically accurate, age-appropriate and inclusive of all students…using language and strategies that recognize all protected classes.” Disability is a protected class. Therefore, CSHE offered to students in grades 4-12 must be inclusive of disability.

Instruction for students in grades Kindergarten-3 is defined in the law as Social-Emotional Learning. This instruction is not focused on human development or reproduction.

CSHE that addresses consent and provides opportunities for developing communication and decision-making skills can support students in making healthy choices that serve them for a lifetime. Consent is defined as granting permission for something to happen or agreement to do something. Consent is important to understand in the context of sexual activity. Rooted in Rights of Washington provides written information and a video within its step-by-step guide for talking about consent with youth with disabilities.

Dating and sexual intimacy are subjects that can be addressed through Supported Decision Making, a legal option in Washington State. Washington law (Chapter 11.130 in the Revised Code of Washington) includes Supported Decision Making (SDM) as an option under the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act. The format for an SDM agreement is up to the individual and their supporters. A sample form is available for download from WashingtonLawHelp.org.

The state has developed curricula and teaching tools that address the many facets of human relationships, from developing social skills and friendships to assuming responsibility for one’s own body, including sexuality. Find these resources on OSPI’s website page called Sexual Health Education.

The Center for Parent Information and Resources provides a library of resources, including several related to the role of parents: Sexuality Education for Students with Disabilities.

Surrogate Parents Support Unaccompanied Students in Special Education

Posted on January 23, 2023January 23, 2023 by Nicol Walsh

A Brief Overview

Parent participation in IEP process is a protected right for students with disabilities. If a student doesn’t have a family caregiver or legal guardian to advocate in their behalf, a surrogate parent is assigned to fill that role.
A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child.
The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).

Full Article

If a student eligible for special education services does not have a family caregiver, adoptive parent, or other legal guardian fulfilling the role of parent, then a surrogate parent is assigned to ensure the student’s rights are protected. The surrogate parent fulfills the family caregiver role on a student’s Individualized Education Program (IEP) team and advocates to ensure the student’s needs are met.

A surrogate parent is an individual appointed by the public agency (usually a school district) responsible for the student’s special education services. Schools are responsible to assign a surrogate parent within 30 days after recognizing the need. Note that a child who is a ward of the state may be assigned a surrogate parent by the judge overseeing their case.

If a private individual, such as a neighbor or friend, has explicit written permission from the student’s parent or guardian to care for the student, a surrogate parent is not required.

A student 18-21 is responsible for their own educational decision-making unless they have a guardian to exercise their legal rights. A school district is responsible to assign a surrogate parent for a student declared legally incompetent or if an adult student with a disability asks for a surrogate parent.

A surrogate parent is required for a minor student when the parent cannot be identified or located or if parental rights have been terminated. A student’s parents are considered to be unknown if their identity cannot be determined from a thorough review of the student’s educational and other agency records.

A student’s parents are considered unavailable if they cannot be located through reasonable effort that includes documented telephone calls, letters, certified letters with return receipts, visits to the parents’ last known address, or if a court order has terminated parental rights. A parent is also considered unavailable if unable to participate in the student’s education due to distance or incarceration.

If a parent is too ill to participate at a meeting, either in person or by phone, that parent has the option of giving another individual written permission to act for them.

An uncooperative or uninvolved parent is not the same as an unavailable one. A surrogate parent is not assigned because parents choose not to participate in their child’s education.

A child identified as an unaccompanied homeless youth by the McKinney-Vento Homeless Assistance Act is an example of a student who would be assigned a surrogate parent to support them within the special education system. Children with surrogate parents might live in foster homes, nursing homes, public or private group homes, state hospitals, or correctional facilities.

In some cases, a state agency has guardianship of a student with a disability: That student requires the assignment of a surrogate parent.

Foster parents need to be formally appointed by the school as surrogate parents if they do not have legal guardianship. Relatives without formal kinship rights also can be designated as surrogate parents within the special education process.

A surrogate parent is not paid and cannot be employed by the school system, or any other agency involved in the care or education of the child. However, an unaccompanied homeless youth may be supported by appropriate staff from an emergency shelter, street outreach team, or other agency temporarily until a surrogate parent with no conflict of interest is appointed.

A surrogate parent must have knowledge and skills that ensure adequate representation of the student. A community volunteer, guardian ad litem, or other invested adult might serve as a surrogate parent. The surrogate parent must commit to understanding the student’s strengths and needs and how the educational system is structured to support the student’s services. Ideally, the surrogate parent lives near the student and is a match for providing culturally appropriate help in the student’s language.

The surrogate parent represents the student in all matters relating to special education identification, evaluation, and placement and works to ensure that the student receives a Free Appropriate Public Education (FAPE) from their school-based services.

The provision for a surrogate parent is part of federal special education law, the Individuals with Disabilities Education Act (IDEA Section 300.519).

Washington’s Office of Superintendent of Public Instruction (OSPI) includes some downloadable resources about the surrogate parent in its Special Education Resource Library.

PAVE is here to help all caregivers, including surrogate parents. For direct assistance, click Get Help to complete an online Help Request Form.

Bullying at School: Key Points for Families and Students with Disabilities

Posted on December 9, 2022March 21, 2024 by Nicol Walsh

Transcript of this video is below:

When students with disabilities are bullied, schools are legally responsible to end the bullying.

By law, schools must act to restore the safety and well-being of students who are harmed by harassment, intimidation, and bullying.

Those words—harassment, intimidation, and bullying, make an acronym: HIB. This video is about HIB protections for students with disabilities.

Please note that bullying increases the risks for suicide and self-harming behaviors.

For a mental health crisis, call 988

For crisis help on topics related to sexual orientation and identity, call The Trevor Project: 866-488-7386

What law says the school has to end the bullying and help my student?

Specific anti-bullying protections for students with disabilities come from Section 504, which is part of a federal law, the Rehabilitation Act of 1973.

The civil right to be protected from bullying applies to all students with disabilities, regardless of whether they have a Section 504 Plan or an Individualized Education Program (IEP). These rights are upheld by the Office for Civil Rights—OCR.

Anyone who knows about an incident of harassment, intimidation, and bullying at school or during a school-sponsored activity can file an OCR complaint at the local, state, or federal level.

What does state law require?

Washington State’s 2019 Legislature passed a law that requires school districts to write formal HIB policies and appoint a person called a HIB Compliance Officer to spread awareness and uphold the laws.

What can parents do?

If your child is bullied at school, ask for the name of your district’s HIB Compliance Officer. Talk to that person about your options and request a HIB complaint form.

If the act included a physical assault or serious property damage, 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.

What counts as harassment, intimidation, or bullying?

Washington State defines a HIB violation as an intentional 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
Or has the effect of substantially disrupting the orderly operation of school

A HIB act may be electronic, written, verbal, or physical.

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

The Office for Civil Rights (OCR) requires schools to take immediate and appropriate action to investigate what happened. That means they talk to everyone involved and any witnesses and write a detailed report.

OCR requires the school to stop the bullying now and into the future.

OCR also says that schools must make sure the student who was bullied is helped and not further injured by actions taken in response. The victim should not be suspended, for example.

OCR says: “Any remedy should not burden the student who has been bullied.”

To learn more about federal laws and complaints, contact OCR at 800-421-3481.

Type the word Bullying or Discipline into the search bar at wapave.org to find additional resources.

Life After High School: Tools for Transition

Posted on October 26, 2022October 26, 2022 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:

High School and Beyond Plan
IEP Transition Plan
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 July 21, 2022July 25, 2022 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 June 3, 2022June 3, 2022 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:

OSPI’s Youth Suicide Prevention, Intervention, and Postvention page
Washington Department of Health Suicide Prevention page
Forefront Suicide Prevention
Child Mind Institute
NAMI Washington lists local affiliates, offers training and support

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.

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

Posted on February 23, 2022February 23, 2022 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 21^st 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:

Life functioning
Behavioral and emotional needs
Risk behaviors
Caregiver resources and needs
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

Parent to Parent (P2P) Connects Caregivers Statewide for Support

Posted on October 28, 2021October 28, 2021 by Nicol Walsh

A Brief Overview

Parent to Parent (P2P) connects families to trained parent volunteers whose children also have disability conditions and special healthcare needs.
The Arc of Washington provides a list of P2P coordinators for every county in the state.
¿Hablas español? Para más información y hacer referidos, llama a su condado bajo: Coordinadores de Enlace Hispano.
Washington is part of the P2P USA alliance: p2pusa.org.

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.

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