Families with Disability Concerns Take Extra Care when Planning for Emergencies

A Brief Overview

  • All families prepare for emergencies, but extra planning is critical when a loved one has a disability.
  • For people with disabilities, The Red Cross provides a page dedicated to disaster safety that takes a step-by-step approach. Included are guidelines for creating a personal assessment and registering with a local emergency assistance program.
  • Virginia Commonwealth University offers an Emergency Preparedness Tool Kit for People with Disabilities through its university center called Partnership for People with Disabilities. The downloadable, 29-page booklet includes checklists and resources.
  • The Federal Emergency Management Agency (FEMA), an agency of the United States Department of Homeland Security, also provides a downloadable brochure: Preparing Makes Sense for People with Disabilities.
  • Read on for additional resources and ideas about how to be informed and organized, with a disability-specific toolkit and emergency plans that are ready to roll if something unexpected does occur.

Full Article

Earthquake, volcanic eruption, fire, flood, terrorist attack, power failure, pandemic… Although rare, the possibility of a major catastrophe can stress a family that may already struggle with special circumstances on a day-to-day basis. Planning for a possible emergency by being informed and prepared can alleviate some of the stress and create a plan for everyone’s safety if something unexpected does occur.

To be fully prepared, a family may need an emergency plan and a survival kit to support to a loved one with additional needs that are specific to a disability. Following are guidelines for getting organized and ready, with each person’s individualized needs in mind.

Be informed

Consider which emergencies are most likely. The Red Cross provides information on a page titled Be Informed to help determine which types of emergencies are most likely in a designated community. Some areas are more prone to forest fires, floods or earthquakes, for example. Consider whether local public systems share information or alert the public if something is happening or about to happen. Will there be a telephone alert or a broadcasted siren? Will there be an emergency broadcast to tune in? The Emergency Alert System (EAS) includes a statewide list of radio stations that broadcast emergency alerts by area.

Consider whether there are shelters nearby, or an evacuation route. The Red Cross encourages people to download the agency’s mobile app to receive local alerts that can include emergency-specific instructions in real time.

Make a plan

Create escape routes that are accessible to everyone within the household. Choose a meet-up spot after everyone has evacuated the home, property, or neighborhood. Consider accessibility based on the entire family’s needs: For example, will someone need to arrive at the meet-up spot by wheelchair? If someone will need a helper to evacuate, designate a helper and a back-up person to provide that support.

Tell emergency contacts about the family’s plan. Consider telling neighbors or nearby friends about where medications or mobility assistance devices (crutches, wheelchairs, walkers) are stored in case help is needed to get those things. The plan includes what may happen before, during and after a disaster.

The Red Cross provides a template for a 3-step plan, to be shared and verified with everyone who might be involved or recruited to help:

  1. All household members discuss how to prepare and respond to the types of emergencies most likely to happen where they live, learn, work and play.
  2. Identify responsibilities for each member of the household and plan a way to work as a team.
  3. Practice as many elements of the plan as possible.

Build a kit

Supplies that are organized and carefully chosen can make a big difference for survival and comfort when emergencies happen. Here are a few basics that can be stored strategically (in a backpack ready-to-grab or at a meet-up location, for example).

  • Shelf-stable food and water
  • First-aid kit
  • Extra clothing
  • Flashlight and batteries
  • Medications
  • Sleeping bags
  • Copies of important documents

The Department of Homeland Security manages a page called Build a Kit with more ideas. FEMA provides suggestions for additional items that can cater to individualized needs. For families with specific dietary restrictions or allergies, Legacy Foods provides resources and ideas. Other options for emergency preparation supplies include: Emergency Kits.com, Stealth Angel, and The Red Cross.

For people with disabilities, The Red Cross  also has a page dedicated to disaster safety that takes a step-by-step approach. Included are guidelines for creating a personal assessment and registering with a local emergency assistance program.

Virginia Commonwealth University offers an Emergency Preparedness Tool Kit for People with Disabilities through a university center, Partnership for People with Disabilities. The downloadable booklet includes checklists and resources.

The Federal Emergency Management Agency (FEMA), an agency of the United States Department of Homeland Security, provides a downloadable brochure: Preparing Makes Sense for People with Disabilities.

Get Involved

Planning for emergencies is not a one-and-done process. Families need to review plans and update kits regularly. Practicing the plan can create confidence that all are on the same page about what to do and where to go. Family members can quiz one another about the plan and keep in touch with neighbors and community members who might be called to help.

Being prepared for an emergency takes time and organization, but a thoughtful plan can help everyone be safer and more confident if called to respond.

 

Tips for Parents: Summer Provides Time to Reinforce Positive Behaviors at Home

A Brief Overview

  • A tidal wave of emotional meltdowns can douse a family during summer break. Read on for tips to create a positive home environment that encourages expected behaviors.
  • A key concept from Positive Behavioral Interventions and Supports (PBIS) is that punishment doesn’t teach children and youth what they should do instead. Adults can direct a child toward a better choice of actions or interrupt an escalation cycle.
  • The easiest way to change a behavior is to point out what a person does right.
  • Parents might find success with strategies they can share with school in the fall!

Full Article

Summertime brings relief and grief in different measures for families. Taking a break from school can mean more time to sleep in, take a vacation or simply daydream. Still, a change in routine can disrupt some children who prefer days that are all the same amount of busy—and disruption can lead to dysregulation. A few strategies, described below, might help smooth troubled waters. In addition, parents might find success with strategies they can share with the school in the fall!

Experts in education are excited about a framework for creating a positive environment with Positive Behavioral Interventions and Supports (PBIS). Currently a popular topic for webinars and in-service trainings nationwide, PBIS has been implemented in more than 26,000 U.S. schools. The PBIS framework has been shown to decrease disciplinary removals and improve student outcomes, including grades and graduation rates. When done well, PBIS provides positive social skills, communication strategies and “restorative justice,” (working it out instead of punishing) and may prevent 80-90 percent of problem behaviors.

Punishment doesn’t teach

PBIS requires an understanding that punishment doesn’t help a child know what to do instead. Researchers have learned that a child who is being punished enters an emotionally dysregulated state (fight/flight/freeze) that blocks learning. Adults who calmly direct a child toward a new way of problem-solving can interrupt or prevent an escalation. De-escalation strategies might include:

  • Remove what is causing the behavior
  • Get down to eye level
  • Offer empathy—the ability to understand and share the feelings of another
  • Provide choices
  • Re-teach expectations
  • Reinforce desired behaviors
  • Communicate care instead of control

Simple, consistent, predictable language is a critical component. Insights about these strategies and more were shared in a webinar by Change Lab Solutions on April 30, 2019.

Among experts talking about PBIS are staff at the University of Washington’s School Mental Health Assessment, Research and Training (SMART) Center, where staff lead the School Mental Health supplement of the Northwest Mental Health Technology Transfer Center (NWMHTTC). These agencies, in collaboration with the League of Education Voters, in June 2019 hosted a webinar: How to Implement Mental Health Supports in Schools, focused on the importance of blending school and community supports with PBIS.

A University of Washington (UW) expert who participated in the webinar is Kelcey Schmitz, a former OSPI staff member who has written articles for PAVE about positive behavior supports and state initiatives and has experience helping families and schools implement PBIS.

“PBIS is a game changer for children and youth with behavior challenges and their teachers and caregivers,” Schmitz says. “In fact, everyone can benefit from PBIS. Behavior is a form of communication, and PBIS aims to reduce problem behavior by increasing appropriate behavior and ultimately improving quality of life for everyone. The same approaches used by schools to prevent problem behaviors and create positive, safe, consistent and predictable environments can be used by families at home.”

Schmitz, an MTSS training and technical assistance specialist, provides the following specific tips for creating a PBIS home environment to create fun, surfable days instead of emotional tidal waves.

Tier 1: Support Positive Behavior before there’s a problem

First, it’s helpful to understand the structure of PBIS, which is set up with three layers—called tiers—of support. The parent-child relationship is strengthened by loving and positive interactions at each tier.

Tier 1 support is about getting busy before there’s a problem. Much like learning to wash hands to prevent getting sick, expected behavior is taught and modeled to prevent unexpected behaviors.  Parents can take a look at their own actions and choices and consider what children will see as examples of being respectful, responsible and safe.

Tiers 2 and 3 are where adults provide a little more support for specific behaviors that are getting in the way of relationships or how the child or youth functions. Tier 2 is for students who need a social group or some extra teaching, practice and reinforcement. 

Tier 3 supports include conducting a functional behavior assessment to find out why the behavior is occurring and then matching the student’s needs to an individualized intervention. Any student should be able to access supports that include aspects of Social Emotional Learning at all three Tiers. At home, Tiers 2 and 3 naturally will be more blended and may include support from a community provider. Note that targeted interventions in Tiers 2-3 work best when Tier 1 is already well established.

Define, teach and routinely acknowledge family expectations

  • Discuss how you want to live as a family and identify some “pillars” (important, building-block concepts) that represent what you value. Talk about what those pillars look like and sound like in every-day routines. To help the family remember and be consistent, choose only 3-5 and create positive statements about them. Here are a few examples:
    • Speak in a respectful voice.
    • Be responsible for actions.
    • Be safe; keep hands, feet and objects to self.
  • Identify a couple of “hot spots” to begin. Challenging behaviors often occur within routines.  Perhaps mornings or mealtimes create hot spots for the family. After discussing 1-2 ways to be respectful, responsible and safe in the morning, teach what each looks like. Have fun with it! Set up “expectation stations” for practicing the plan and assign each family member one pillar to teach to the rest.
  • Behaviors that get attention get repeated. Notice when a child does the right thing and say something about each success: “I noticed you stopped to pick up your shoes in the hallway. Thanks for putting them away and keeping the walkway safe for others.” The easiest way to change a behavior is to point out what a person does right!
  • Remember this catchy phrase, “5:1 gets it done” to ensure five positive interactions for each negative interaction. When the expected behavior becomes routine, the reinforcement can fade away.

Create engaging and predictable routines

  • Children crave structure and routine. Adults may look forward to a relaxing evening or weekend, but kids often need regular activity and engagement. Consider that either the kids are busy, or the adults are busy managing bored kids!
  • Use visuals to create predictability. A visual schedule can display major routines of the day with pictures that are drawn, real photos or cut-outs from magazines. Create the schedule together!  Parents can ask a child to check the schedule – especially when moving from a preferred to non-preferred activity. It’s hard to argue with a picture!

Set the stage for positive behavior

  • Teach, pre-teach and re-teach. Children need to learn behavior just like they learn colors and shapes. A quick reminder can help reinforce a developing skill: “When we get in the car, sit up, buckle up, and smile!”
  • Give transition warnings or cues to signal the end of one activity and the beginning of another: “In five minutes, it will be bath time.”
  • First/then statements set up a child for delayed gratification: “First take your bath; then we can play dolls.”
  • Focus on Go instead of Stop. Children often tune out words like No, Don’t and Stop and only hear the word that comes next, which is what an adult is trying to avoid. Tell a child what to do instead of what not to do: “Take your plate and put it in the sink.” Save Stop and No for dangerous circumstances that need a quick reaction.  
  • Choices prevent power struggles: “Would you rather play for five more minutes or get in the bath now?”  “Feel free to choose the pink pajamas or the green ones.”

While these strategies may not eliminate all problem behaviors, they create consistency, predictability and a more positive atmosphere. They teach new skills to help children get their needs met. The solid foundation will help even if challenging behaviors persist by creating a bedrock for additional layers of support.  

Here are places to seek additional information:

Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior 

Home and Community Based Positive Behavior Support Facebook Page

Home and Community PBS Website

Parent Center Hub Positive Behavior Supports Resource Collection

Intensive Intervention: An Overview for Parents and Families

The Association for Positive Behavior Support

Getting Behavior in Shape at Home

Family Resources for Challenging Behavior

The National Center for Pyramid Model Innovations (NCPMI) Resource Library, articles in multiple languages

Parents with Disabilities Have Rights

Brief overview:

  • For nearly 100 years, parents with disabilities have experienced fewer rights than their non-disabled peers.
  • The Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act (ADA) protect parents and prospective parents with disabilities from unlawful discrimination in the administration of child welfare programs, activities, and services.
  • Despite legal protections, parents with disabilities still are referred to child welfare services and permanently separated from their children at disproportionately high rates.
  • Parents who believe they have experienced discrimination may file an ADA complaint online, by mail, or by fax. Another option is to file a complaint with the Office for Civil Rights through the Department of Health and Human Services (HHS). Read on for details about how and where complaints are filed.

Full Article

In 1923, the Supreme Court of the United States (SCOTUS) established parental rights, but four years later parents with disabilities were denied those protections. In Buck v. Bell, May 2, 1927, SCOTUS ruled that persons with disabilities do not have fundamental rights to make private decisions regarding family life. The Americans with Disabilities Act (ADA) in 1990 attempted to correct some disparities, but parents with disabilities still have their children removed from their homes at disproportionate rates.

Here are a few Facts About Disability Rights for Parents, compiled by the National Council on Disability and the Christopher and Dana Reeve Foundation:

  • In the United States, 4.1 million parents have disabilities.
  • 1 in 10 children have a parent with a disability.
  • 5.6 million Americans live with paralysis from stroke, multiple sclerosis, spinal cord injury, traumatic brain injury, neurofibromatosis, cerebral palsy, post-polio syndrome or other issues.
  • 35 states include disability as grounds for termination of parental rights.
  • Two-thirds of dependency statutes allow courts to determine a parent unfit, based on disability.
  • In every state, disability of the parent can be included in determining the best interest of the child.
  • The District of Columbia, Georgia, Kansas, Maryland, Mississippi, North Dakota, New Mexico, Ohio, Oklahoma, and South Carolina allow physical disability as the sole grounds for terminating parental rights, without evidence of abuse or neglect.

The ADA prohibits discrimination based on disability

The ADA makes it unlawful to discriminate against individuals with disabilities in all areas of public life, including jobs, schools and transportation. The federal law, which is upheld by the Office for Civil Rights, covers all public and private places that are open to the general public. Under the ADA, people with disabilities have the right to equitable access. Equity doesn’t mean equal: It means that accommodations are provided to ensure access to something that everyone else has access to.

In 2008, the Americans with Disabilities Act Amendments Act (ADAAA) was signed into law. The ADAAA made significant changes to the definition of disability. The ADA is organized in sections called “Titles,” and the ADAAA changes applied to three Titles of the ADA:

  • Title I: Covers employment practices of private employers with 15 or more employees, state and local governments, employment agencies, labor unions, agents of the employer and joint management labor committees
  • Title II: Covers programs and activities of state and local government entities, including child welfare agencies and court systems
  • Title III: Covers private entities that are considered places of public accommodation

Equitable parenting opportunities are a Civil Right

Title II of the ADA and Section 504 of the Rehabilitation Act of 1973 protect parents and prospective parents with disabilities from unlawful discrimination in the administration of child welfare programs, activities, and services. Section 504 also protects students with disabilities, and PAVE has an article about that.

The goal of the ADA and Section 504 as it applies to parents and prospective parents is to ensure equitable access to parenting opportunities.  Also, these Civil Rights laws recognize that separation of parents from their children can result in long-term negative outcomes. The ADA requires child welfare agencies to:

  • Give a fair chance to parents with disabilities so they can take part in programs, services, or activities. 
  • Provide help to make sure people with disabilities understand what is being said or done.
  • Prevent barriers that make programs, activities or services hard to access because of disability.

Title II of the ADA and Section 504 also protect “companions”—people who help individuals involved in the child welfare system. A companion may include any family member, friend, or associate of the person who is seeking or receives child welfare services. For example, if a helper person is deaf, the child welfare agency provides appropriate auxiliary aids and services to ensure effective communication.

Discrimination leads to family separation

According to a comprehensive 2012 report from the National Council on Disability (NCD), parents with disabilities are often inappropriately referred to child welfare services. Once involved, these agencies permanently separate families impacted by disability at disproportionately high rates.

According to the report, discrimination most commonly involves parents with intellectual and psychiatric disabilities. Parents who are blind or deaf also report significant discrimination in the custody process, as do parents with other physical disabilities. Individuals with disabilities seeking to become foster or adoptive parents encounter bias and barriers to foster care and adoption placements. The NCD linked the discrimination to stereotypes and speculation about parenting ability rather than evidence of problems in the home. The agency found a lack of individualized assessments and that many families weren’t receiving needed services.

The ADA and Section 504 provide Civil Rights protections against retaliation or coercion for anyone who exercises anti-discrimination rights. ADA complaints can be filed online, by mail, or by fax.

To file an ADA complaint online:

Americans with Disabilities Act Discrimination Online Complaint Form | (en Español)
Instructions for submitting attachments are on the form.

To file an ADA complaint by mail, send the completed ADA complaint form to:

US Department of Justice 
950 Pennsylvania Avenue, NW
Civil Rights Division 
Disability Rights Section – 1425 NYAV
Washington, D.C. 20530

To file an ADA complaint by facsimile, fax the completed ADA complaint form to: (202) 307-1197

Individuals also may file complaints with the Office for Civil Rights at the Department of Health and Human Services (HHS). For instructions to file in English or other languages, go to How to File a Civil Rights Complaint.

Always save a copy of the complaint and all original documents.

For more information about the ADA and Section 504, call the Department of Justice ADA information line: 800-514-0301 or 800-514-0383 (TDD), or access the ADA website.

Visit the following websites for additional information:

Parenting with a Disability: Know Your Rights Toolkit

Protection from Discrimination in Child Welfare Activities

Children’s Bureau – An Office of the Administration for Children and Families

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children

Parental Disability and Child Welfare in the Native American Community

Protecting the Rights of Parents and Prospective Parents with Disabilities

 

Mental Health Education and Support at School can be Critical

A Brief Overview

  • Two Washington students die from suicide each week. In a typical high-school classroom of about 30 students, chances are high that 2-3 students have attempted suicide in the past year. Read on for more detail from the 2018 statewide Healthy Youth Survey.
  • Approximately one in five youth experience a mental illness before age 25. About half of those with diagnosed conditions drop out of school.
  • These outcomes make adolescence a critical time for mental health promotion, early identification and intervention. Read on for ideas about how to seek help.
  • The Adolescent Behavioral Health Care Access Act, signed into law May 13, 2019, provides for more parent involvement in mental healthcare for youth 13-18.
  • Seattle Children’s Hospital has a new referral helpline. Families can call 833-303-5437, Monday-Friday, 8-5, to connect with a referral specialist. The service is for families statewide.
  • A mom in Graham, WA, launched a program to improve education about mental health after her son died by suicide in 2010. The Jordan Binion Project has trained about 500 Washington teachers with an evidence-based curriculum from Teen Mental Health.
  • Emotional Disturbance is a federal category of disability under the Individuals with Disabilities Education Act (IDEA). A student might qualify for an Individualized Education Program (IEP) under this category, regardless of academic ability. To qualify, a disabling condition must significantly impact access to learning. An educational evaluation also must show a need for specialized instruction.
  • Parents can share these resources with school staff, who may be seeking more information about how to help youth struggling to maintain their mental health.
  • Help is available 24/7 from the Suicide Prevention Lifeline: 1-800-273-TALK.
  • Another crisis option is to text “HEAL” to 741741 to reach a trained Crisis Text Line counselor.
  • For youth who need support related to LGBTQ issues, the Trevor Project provides targeted resources and a helpline: 866-488-7386.

Full Article

The thousands of young people who send thank-you letters to Deb Binion didn’t always believe their lives were going to work out. One writer had attempted suicide and been hospitalized many times because of her bipolar disorder. Two years after finishing high school, she reported she was doing well and offered thanks for a course in mental health that helped her understand her illness, its impacts on her brain, and how to participate in her treatment. “It made a total difference in my life,” she said in her thank-you letter.

“Until she got the educational piece and understood her illness, nothing was helping,” Binion says. “No one had ever explained to her why she had this illness and what was occurring.”

The program, which Binion started after her son Jordan’s suicide in 2010, has trained about 500 school staff throughout Washington State to help young people understand mental illness and what to do to support themselves and others. Although the numbers are difficult to track, Binion estimates that about 100,000 Washington students receive education through the curriculum each year.

“My mission is to get this information to the kids,” says Binion, who runs the non-profit Jordan Binion Project from her home in Graham, WA. She says a short-term, limited pilot project with the Office of Superintendent of Public Instruction (OSPI) showed promising results, with 60 teachers throughout Washington informally reporting that about 85 percent of students showed improvement in their “mental health literacy,” a key feature of the program.

Teachers are specially trained to provide the Mental Health Curriculum

The curriculum, available through TeenMentalHealth.org, was developed by a world-renowned adolescent psychiatrist and researcher, Stan Kutcher. He observed that classrooms often struggle to provide an emotionally safe learning environment for students with psychiatric conditions. Some attempts to provide education about mental health have created confusing and triggering circumstances for students impacted by illness and/or trauma, he found.

Kutcher, professor of psychiatry at Dalhousie University in Nova Scotia, Canada, responded with a model for training school staff in how to teach sensitive topics of mental illness:

  • eating disorders
  • anxiety/depression
  • attention deficit hyperactivity disorder (ADHD)
  • obsessive-compulsive disorder (OCD)
  • bipolar disorder
  • schizophrenia
  • post-traumatic stress disorder (PTSD)
  • suicidal thinking

Deb Binion says the program was designed for students in grades 9-10, but middle-school and older students are also learning from it.  She says the program takes about 8-12 hours to teach and that teachers in regular health classes, psychology classes, family and consumer science classes and others have taught the lessons.

Binion suggest that staff receive in-person training to understand how to create a safe learning environment for students. For example, teachers learn to provide individualized help without disclosing a student’s disability or medical condition to the class.

The topics can be confusing or triggering to some learners. Some of the videos might be difficult to watch because they include personal stories of self-harm, hospitalization and people suffering from emotional stress. The program may need individualized modifications for students in special education programs because of intellectual or developmental disabilities.

For information about how to bring a training to your area, individuals can contact Deb Binion through the Jordan Binion Project website or directly through her email: deborah@jordanbinionproject.org.

Washington State recognizes a need for more education and direct support

OSPI, which oversees all school districts in Washington, provides an overview of Kutcher’s work and its connection to the Jordan Binion Project as part of the Mental Health & High School Curriculum Guide. Content in the guide was a collaboration between Kutcher and the Canadian Mental Health Association. At Dalhousie University in Nova Scotia, Kutcher serves as Sun Life Financial Chair in Adolescent Mental Health and Director of the World Health Organization Collaborating Center in Mental Health Training and Policy Development.

Washington State is aware that a lack of mental health services is impacting students. In 2018, OSPI released data that two children enrolled in Washington schools die by suicide weekly.

According to the 2018 Washington Healthy Youth Survey, at least one in three youth in all grades report feeling sad or hopeless for enough time to impact their activities. In ten years, those numbers increased by 10-20 percent across all grades. More than 900 schools administered the survey, representing all 39 Washington counties and 228 school districts.

About one in three 10th and 12th graders report feeling nervous, anxious or on edge, with an inability to stop worrying. From 2016 to 2018, the percentage experiencing these feelings increased for all grades. Rates of reported suicide have remained alarmingly high, with about 10 percent of students reporting that they have attempted suicide recently.

This means that in a typical high-school classroom of about 30 students, chances are high that two or three students have attempted suicide in the past year.

Female students and students who identify as lesbian, gay, or bisexual report higher rates of considering, planning, and attempting suicide. For youth who need support related to LGBTQ issues, the Trevor Project provides targeted resources and a helpline: 866-488-7386.

High rates of suicide attempts also are reported among students who identify as American Indian or Alaskan Native (18 percent) and students who identify as Hispanic (13 percent). Help for all is available 24/7 from the Suicide Prevention Lifeline: 1-800-273-TALK. Another crisis option is to text “HEAL” to 741741 to reach a trained Crisis Text Line counselor.

Despite the alarming data and evidence that adult support can impact outcomes, only half of students say they have access to direct adult support when they feel extremely sad or suicidal.

The 2018 Healthy Youth Survey introduced a modified Children’s Hope Scale, which measures students’ ability to initiate and sustain action towards goals. Across grades, only about half of students feel hopeful for their futures. Students who identify as lesbian, gay or bisexual and students of color were less likely to report adult support and were less likely to be highly hopeful for their futures.

State, local, community and school efforts are crucial for supporting youth mental health. With the release of the survey in Spring, 2019, the state issued a guide to information and resources to provide more detail about the survey and to direct families and school staff toward sources for support.

Latest data for 10th graders female students and lesbian, gay or bisexual students report higher rates of considering making a plan for and attempting suicide

An OSPI survey in 2018 found that the number one concern statewide is that students don’t receive enough direct support in mental health, counseling and advising at school. The Washington School-Based Health Alliance (WASBHA) is working with some districts who have varied grants throughout the state to build on-campus health clinics to address a range of student health-care needs, including mental health. The Alliance sponsored an all-day summit May 3, 2019, at the Seattle Flight Museum that was attended by several hundred professionals invested in building collaborations between public health agencies and schools. Throughout the day, professionals discussed how students are much more likely to seek a counselor at school than in the community and that outcomes improve when providers and school staff collaborate and provide individualized help focused on relationship-building.

New state law expands parent involvement in mental-health treatment

Youth older than 13 have the right to consent or not consent to any medical treatment in Washington State. Parents and lawmakers throughout 2018-2019 engaged in conversations about how that creates barriers to care for may teens who don’t fully grasp their mental condition or how to recover.

In response, lawmakers wrote and passed the Adolescent Behavioral Health Care Access Act (HB 1874), signed into law by Gov. Jay Inslee May 13, 2019. The new law allows behavioral health professionals to provide parents or guardians with certain treatment information if they determine the release of that information is appropriate and not harmful to the adolescent. The bill also permits parents and guardians to request outpatient treatment for their adolescent, expanding the current parent-initiated treatment process so that adolescents can get treatment before they reach the point of hospitalization.

“Parents across the state are desperate to be allowed to help their children struggling with mental health issues or a substance use disorder,” says Rep. Noel Frame from the Seattle area. “At the same time, we need to protect the rights and privacy of these youth. This bill strikes a balance by ensuring adolescents can continue to access treatment on their own, while giving concerned parents an avenue to help their children and be involved with their treatment.”

Parents also have a new option for helping their children and youth by contacting Seattle Children’s Hospital, which in 2019 launched a new referral helpline. Families can call 833-303-5437, Monday-Friday, 8-5, to connect with a referral specialist. The service is for families statewide. In addition to helping to connect families with services, the hospital will be positioned to identify gaps in the system through its engagement with families.

One in five youth are at risk

The Teen Mental Health website cites an international statistic that 1 in 5 youth experience a mental illness before age 25. Many of those illnesses lead to life challenges that require help, the agency concludes, and this makes adolescence a critical time for mental health promotion, prevention, early identification, and intervention. The agency provides a School-Based Pathway Through Care that promotes linkages between schools and healthcare agencies, parent involvement and strong educational programs that reduce stigma through knowledge and timely treatment access.

One way that Washington State has responded to the crisis is through promotion of trainings in Youth Mental Health First Aid. Through Project AWARE (Advancing Wellness and Resilience in Education) and other initiatives, Washington has grown a network of about 100 trainers for Youth Mental Health First Aid and about 4,000 first aid providers. These trained individuals can listen actively in order to offer immediate caring and can also refer youth to providers. OSPI reports that Project AWARE has led to 3,964 referrals for youth to connect with community- or school-based mental health services.  

Washington has a program for treatment response for youth experiencing psychosis. The New Journeys Program is designed for youth 15-25 who are early in their diagnoses, but there is some flexibility in who might be eligible to participate. Families can contact the program for additional information about how to apply.

Information about psychosis, early warning signs and places to seek help are available through the website of the Washington Health Care Authority (HCA). The website contains a link to information about the Wraparound with Intensive Services program (WISe), which provides community case management for children and youth experiencing a high-level of impact from a mental illness.

Special Education is one pathway toward more help

Students access some aspects of mental health support through the special education system. Emotional Disturbance is a federal category of disability under the Individuals with Disabilities Education Act (IDEA). In Washington State, the category is referred to as Emotional Behavior Disability (EBD). The IEP might list any set of these words or the initials EBD or ED.

A student might qualify for an Individualized Education Program (IEP) under this category, regardless of academic ability. A comprehensive educational evaluation can determine whether a student’s mental condition causes a significant disruption to the student’s ability to access school and learning and whether the student needs specialized instruction. Generally, that specialized instruction is provided through a category of education known as Social Emotional Learning (SEL). SEL can be provided in multiple tiers that might include schoolwide education, small group training and individualized programming. OSPI provides recommendations from a 2016 Social Emotional Learning Benchmarks Workgroup.

A student with a mental health condition also might qualify for an IEP under the category of Other Health Impairment (OHI), which can capture needs related to anxiety, ADHD, Tourette’s Syndrome or another specific diagnosis. Students with a mental health condition that co-occurs with another disability might qualify under another category, and Social Emotional Learning might be an aspect of a more comprehensive program. PAVE’s articles about the IDEA and the IEP provide further information about IEP process, the 14 categories of qualifying disabilities and access to special education services. A student with a mental health condition who doesn’t qualify for an IEP might qualify for a Section 504 plan.

If a student, because of a disability, is not accessing school and learning, then the school district holds the responsibility for appropriately evaluating that student and determining the level of support needed to provide access to a Free Appropriate Public Education (FAPE). Questions about FAPE might arise if a student with a mental health condition is not accessing school because of “school refusal,” which sometimes leads to truancy, or because a student is being disciplined a lot. Students with identified disabilities have protections in the disciplinary process; PAVE provides an article about school discipline.

Help NOW can mean a lifetime of better opportunities

The Center for Parent Information and Resources (ParentCenterHub.org) has a variety of resources related to mental health awareness, including a link to a video that details results from a national study. The study showed that students who qualified for special education programming because of Emotional Disturbance experienced the highest drop-out rates when they went into higher education, work and vocational programs. Meaningful relationships with adults who cared about them in school provided a significant protective factor. Students were more likely to succeed in life-after-high-school plans if specific caring adults provided a soft hand-off into whatever came next after graduation.

Here are a few additional resources:

 Here are some articles specifically about Bipolar Disorder in Youth:

Accommodations for Students with Bipolar Disorder and Related Disabilities

Educating the Child with Bipolar

Bipolar & Seasons: Fall Brings More Than Just a Change in Colors

 

Self-Care is Critical for Caregivers with Unique Challenges

Consider that 20 percent of the population has a disability. That’s one-fifth of all people who need extra support! Caregivers for those high-needs individuals may experience compassion fatigue and stress at high levels. National Geographic’s film, Stress, Portrait of a Killer, provides an overview of the risks and includes a story of parents who care for a child with special needs (See Minute 38 for that section of the report). 

The way to manage chronic stress is consistent self-care. Here are ways to stay mentally and physically healthy. In other words, here’s how caregivers can pull on that oxygen mask first in order to be well enough to assist others!

1. Connect

Meet up with people who get what you are going through. Schedule coffee with another parent with similar challenges on a regular basis. Parents often find each other at school, but here are other ideas about where you might find one another: Special Olympics practice, Special Needs Parent-Teacher Association, extracurricular events. A local Parent-to-Parent network can help by matching parents with similar interests or by providing a regular parent-group meeting.  

2. Sleep

The body uses sleep to recover, heal, and process stress. Here are ideas if anxiety or intrusive thinking interrupts sleep: Turn off screens after 7 p.m.—or use a blue-light filter; find sleep-music beats or a hypnosis program online; drink a calming herbal tea, such as chamomile; journal to process thoughts before bed. For more ideas, visit Sleepfoundation.org.

3. Exercise

Go for a walk, practice yoga, swim, wrestle with your kids, chop wood, work in the yard, or have a living-room dance party. Moving releases feel-good body chemicals. Check out the Mayo Clinic for more information on exercise and stress.

4. Be Mindful

Mindfulness can be as simple as taking time to notice your breath and focus attention there. Other ways to focus the mind for a general calming benefit: meditate, color, work on a car, build something, do art, put together a puzzle. The key is to find a quiet place that feels nurturing and calming. For more resources, check out mindful.org.

5. Make Time

An overfull calendar or unscheduled chaos can take over the day. A carefully organized calendar, managed with realistic boundaries, can help: If someone requests time, the calendar clearly shows when a meeting is possible. Parents can set SMART goals for a day, week or month: Assess whether the goals are Specific, Measurable, Achievable, Relevant and bound by a clear Timeframe. PAVE’s article on SMART Goals can help parents manage time while learning about how to assist with educational planning. Another resource with time-management tools: calendar.com: Why Stress Management and Time Management Go Hand in Hand.

6. Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. Parents of children with disabilities can apply through the Developmental Disabilities Administration (DDA) to seek eligibility for in- home personal care services and to request a waiver for respite care. For further detail about how to access services, refer to wapave.org DDA Access video or Informingfamilies.org DDA services.