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

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

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

A Brief Overview

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

Full Article

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

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

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

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

Eligibility for Transition Recovery Services is an IEP team decision

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

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

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

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

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

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

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

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

Every IEP team should talk about Recovery Services

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

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

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

The key question to bring to the meeting

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

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

Transition Recovery Services are documented with PWN

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

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

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

What can families do?

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

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

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

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

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

How are graduation requirements impacted by COVID?

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

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

All students have the right to participate in Commencement

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

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

By Kyann Flint

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

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

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

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

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

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

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

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

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

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

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

Map Your Future with Person-Centered Planning

A Brief Overview  

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

Full Article  

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

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

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

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

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

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

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

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

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

People in my Life     

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

Who am I?  My Story, My History    

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

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

 Likes and Dislikes  

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

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

What Works/ Doesn’t work 

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

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

Gifts, Talents and Strengths  

This map asks several questions: 

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

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

Dreams /Nightmares 

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

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

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

Needs 

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

Action Steps  

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

Example:    

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

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

How to get a Person-Centered Plan  

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

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

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

Inclusion.com: All My Life’s a Circle  

Inclusion.com: The Path Method 

Video from PAVE, Tools 4 Success  

Informing Families.org  

How are you making a difference?

Mentor. Volunteer. Learn. 

Continue reading “How are you making a difference?” →

What are your favorite things to do?

What are your favorite things to do?

Continue reading “What are your favorite things to do?” →

My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind

Getting a job right after I graduated was a very exciting and scary experience. Luckily, I had Washington State Department of Services for the Blind (DSB) staff to help me along the way because without their help, experiencing new things would have been difficult. At first, I was nervous. I wasn’t sure what I wanted to do after high school. Luckily DSB staff stepped in and helped me figure out some things. I am getting job experiences with different companies like the Museum of Flight and at PAVE, a nonprofit that assists young adults like me. PAVE also assists parents, families and anyone connected to a child, youth or young adult with disabilities.

Reasonable accommodations were part of this experience. Some of the new experiences that worked for me were asking for accommodations such as getting a larger keyboard so it would be easier to see and type. Another accommodation I had was using an iPad to use the speech to text feature. This helps me get my thoughts in order instead of typing them out.

DSB also helped me get situated to find the right resources such as how to use shuttle services. It took a while to fill out all the paperwork but in the end, it was very simple to figure out and the wait was worth it.

They have helped me find job experiences which have helped me get to the job and do the work, stay busy and get ready for the real world.

I encourage you to try to get the help from agencies like the DSB or any other agency that will help you get a job. They will guide you all along the way!

Transition from Child Based to Adult Based Services in Behavioral Health

From Child to Adult

Transition to adulthood is difficult for all young adults, but if you are a young adult who utilizes Behavioral Health or Substance Use Disorder services it can be confusing and overwhelming. It is also difficult for the parents and guardians who support them. Moving from child based to adult based services takes some preparation to make it easier and it ideally should start a year or more before the shift. Depending on the intensity of need and the way that the disorder is affecting the young adult’s decision making skills, it can be helpful for you, as the guardian, to check and see if your youth’s current providers have transition support.

  • If transition planning is not available, you can go and visit companion adult based service providers to get information on how their system of support works. You can also ask how to find a new provider.
  • If this is a young adult on Medicaid, the regional Behavioral Health Organization should have contact information and locations for these providers.
  • If you are under private pay or employer based insurance, you will need to reach out to your youth’s current behavior health provider and/or therapist to see if they have some recommendations or can do a transition plan of care.
  • If you go to two different providers for therapy and medication management you will need to connect with both.

Behavioral health and substance use disorder privacy laws have some very strict rules in place around shared information concerning the youth’s treatment plan, and if you are not a part of a wraparound or WISe program, you may have a more difficult time with providers responding to your inquiries. Ask for generalized information that can be applied to anyone about how the system works. This keeps it from being about a specific person and makes it easier for behavioral health professionals to share their processes with you.

The young adult accessing these services may want to participate in this process themselves. This can allow you to be a side-by-side support and they can give permission for you to be with them as they explore. Understand that once they are shifted to adult services, unless you have guardianship or they are determined to be incompetent or a danger to themselves or others, you will no longer have any decision-making power. Doing ground work ahead of time allows for a smoother transition and helps them maintain care longer.

Things to look at when planning for transition:

  • Wait times to see the provider.
  • Is there medication management out of the same office?
  • Do they have an adult based wraparound type system?
  • How accessible is the building and is it on a bus or transit line?
  • Does the adult provider have a relationship with the current provider?
  • Who is another trusted support person if your young adult no longer wishes you as a parent or guardian to be involved?
  • What community supports need to be in place to for your young adult to be successful (smart phone apps, state community living supports like food stamps, SSI, disability bus pass, etc.)?

The key to prepping is creating a communication pathway ahead of time so that you can support your young adult as they transition. In the Behavioral Health System, at age 13 youth can demand that they make their own decisions in their care. This means starting at age 11 or 12 can help them in making smarter choices where their own care is concerned. Working to become a trusted support for both the therapists and your youth, as well as starting the conversations early, makes all the difference in the world.

So you’re at College…What Next?

Navigating the Higher Education Environment When You Live With Disability

Research over the past 20 years indicates that a fairly high percentage of college students with disability choose not to disclose that disability to a college administration.  They are tired of “being labeled” or singled out because of their situation and simply want to participate in the same way as students without disability.  This doesn’t necessarily mean hiding their disability (pretty difficult to hide a mobility device or service animal), they’ve just “had it” with permissions, meetings, and forms.

At the same time, many students get onto campus wanting not to disclose, and discover that yes, they *do* have to jump through the hoops at Disability Services in order to access strategic supports.

[If you’ve already met with the disability/access services office at your campus, and provided documents to receive services and equipment, you can skip this next section]

If you’re just beginning the access process, this is what you have to do:

  • Be able to clearly explain your disability and your specific requirements for services and equipment. It’s better to ask for more than you might expect to get, but be aware of the possibility that if the school can’t provide a service or equipment and you absolutely need it, you and your family will have to bear the expense, or you will have to find a school where such services/equipment is available.
  • Make an appointment at Disability/Access Services
  • Fill out any forms requesting services and equipment (usually available online)
  • Make certain you have all required documentation.

Below is an example of typical required documentation.  It can vary from school to school, and you will find a similar list again, usually on the school’s website under “Disability/Access Services”.

“In order for a student to receive an educational accommodation due to the presence of a disability, documentation from a professional service provider must be obtained. Professional providers may include, but not necessarily be limited to, those identified below:

Disability Category         Professional Provider

ADD ADHD                        Psychologist/Psychiatrist

Emotional disability       Psychologist/Psychiatrist

Auditory disability          Certified Otologist, Audiologist

Visual disability               Ophthalmologist, Certified Optometrist

Learning disability          Psychologist, Neuropsychologist, Learning Disability Specialist

Physical disability           Medical Doctor, Physical Therapist, Orthopedic Surgeon, Doctor of Rehabilitation

Chronic health impairment         Medical Doctor, Medical Specialist

Documentation from a professional service provider must be in writing, must be current within three years, and must include the following when 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.

For students identified as having a specific learning disability, the assessment must be specific to the student, comprehensive, and include:

  • Aptitude
  • Achievement
  • Assessment of the student’s information processing capabilities,
  • Raw data and interpretation of the data
  • Specific educational recommendations based on the data interpreted.
  • Effect on the student’s ability to complete a course of study.
  • Suggestions for educational accommodations that will provide equal access to programs, services, and activities…”

-Source: Tacoma Community College, Tacoma, WA at: http://www.tacomacc.edu/resourcesandservices/accessservices/forms/

What Happens After the Appointment with Disability Services?

After the appointment, you’ll get an official notification from the Disability/Access Services administration informing you of your eligibility for services, and if eligible, what services you can expect to receive.

You may have to place additional calls to Disability/Access Services to determine when services begin, where to pick up equipment, arrange meetings with note takers, etc.

At most schools, YOU are responsible for notifying each of your instructors (every semester!) of your requirements for accommodations. Hang on to that eligibility letter–better yet, make multiple copies to hand out to instructors.  Having known many college instructors, I suggest you don’t send this by email alone. Hard copy rules in this case.

Informing instructors about accommodations means giving plenty of notice for them to order alternatives to conventional textbooks. If you’re doing this at the beginning of a semester, expect delays getting the material. This sometimes happens even when you had your appointment with Disability/Access Services many months in advance of the semester. If so, you may have to negotiate with your instructor for extensions on assignments.

Make sure you 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. You may have to provide your own equipment or software outside those limits.

Some Disability/Access offices are one-stop shopping, and can set you up with tutors, any necessary remedial courses and on-campus health services (including mental/emotional health).  At other schools, it’s very fragmented, and YOU will have to find these services separately, even when they are related to your disability.

Most such services are available through departments labeled “Student Services”, “Student Success Services”, “Counseling”, “Health Services” and the like.  If you are unsure of where to find services, you can contact staff in an office usually labeled “Dean of Student Services”.  College Deans are top-level administrators who oversee a number of related departments.  Their staff are knowledgeable about all departments under that Dean’s authority.

Who to Talk with About Issues

What if you have issues with instructors not allowing or ignoring your accommodations?

Your first step should be to re-issue your eligibility letter to that instructor, following up by requesting the Disability/Access office to notify the instructor of your eligibility through their office. If this doesn’t resolve the issue, all schools accepting federal funds will have a Section 504 Coordinator (or similar title) on campus. This person is probably on staff in the Disability/Access Services office, wearing additional hats. Complaints regarding your access to materials, instruction, and class activities go to this person.

If you’re not using a Section 504 plan but still require accommodations, all schools accepting federal funds will also have an ADA Coordinator (or similar title). This person may or may not be located in the Disability/Access Services office but that office will be able to direct you to them.

[The ADA Coordinator is also the person to see when you have an unresolved issue around physical access on campus or with any program offered away from the main campus.]

Complaints about instructors *not* relating to your accommodations are usually addressed to the Dean of Academic Affairs (yes, another Dean), or the Chairperson of the academic department for that instructor.

In most cases, it’s appropriate to discuss any concerns with your instructor before escalating a concern or complaint up the line.

Navigating the Campus:

If your disability includes physical limitations you’re already aware of how many barriers exist to full participation in any environment. Many, many schools were built prior to ADA, and their facilities reflect lots of poor accessibility design. [I attended a school that only had accessible restrooms on every other floor, and in each case those restrooms were at the opposite end of the hallway from the elevators! At another school, I had classes in a building that underwent (planned) replacement of the only building elevator during the height of the semester].

If possible, move onto campus (or visit the campus) early for some “dry runs”. Acquire a campus map to figure out the quickest to get to classes, dining halls and sports facilities.

Make friends with the administrators working at Campus Police. (They’re the ones who assign parking spaces and they also know the best and quickest ways around grounds and buildings.)

It also doesn’t hurt to know the phone number for the folks who run the facilities. This department is sometimes called Physical Plant, Facilities, or Buildings and Grounds. They’re really useful when the accessible restroom is out of order, when the elevator breaks down, and when you want to know if certain areas are clear of snow and ice.

Lots of Fuss-Why Bother?

All this navigation of a college’s bureaucracy seems overwhelming, listed here all at once. Don’t get discouraged. I’ve listed these possibilities here so you can make notes for yourself and be prepared. With luck, you’ll never need to contact some of these offices or people. On the other hand, “entropy happens”—things sometimes go sour. Knowledge is power!