Tag: family support

Mental Health Education and Support at School can be Critical

Posted on by Nicol Walsh

A Brief Overview

  • Approximately one in five youth experience a mental illness before age 25. About half of those with diagnosed conditions drop out of school.
  • Suicide kills two Washington students each week.
  • These outcomes make adolescence a critical time for mental health promotion, early identification and intervention.
  • 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.

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. Last year OSPI released data that two children enrolled in Washington schools die by suicide weekly.

According to a 2016 Washington Healthy Youth Survey, about 15 percent of teens in the state report that they have made a suicide plan. About the same percentage report that they don’t have adults to turn to when they feel depressed or anxious. The survey asked about sadness and hopelessness and whether the feelings could interrupt life for at least two weeks. About a third of the teenagers responded yes. The Centers for Disease Control reports that rates of completed suicide are rising in every region.

 

Two charts with the title, Students Experiencing Significant Mental Health Issues: 2016 Healthy Youth Survey Data

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. Lawmakers are addressing a variety of bills during the 2019 legislative session related to mental healthcare and education. The public can contact lawmakers to participate in advocacy, and PAVE’s Washington Parent Training and Information Facebook page provides updates about some state actions that may impact families and students.

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:

  • NBC featured the Binion family and the work of their foundation.
  • OSPI provides schools with resources related to mental health education, including information related to suicide awareness and prevention.
  • PAVE provides a 40-minute webinar about suicide awareness.
  • The state currently is considering a bill to improve funding for counseling services and other bills that would boost education around mental health.
  • PAVE provides additional information about Social Emotional Learning (SEL) and state actions related to SEL programming and staff development in a series of three articles.
  • A federal agency called the Child Mind Institute provides parents with guidance about getting good mental-health care for their children and has articles on specific diagnoses and what parents and schools might do.
  • For 1:1 assistance, families can reach out to PAVE’s Parent Training and Information Center through our online Help Request Form or by calling 800-572-7368.

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

 

When your loved one has to be admitted to the hospital

Posted on by Nicol Walsh

When your loved one has to be admitted to the hospital, it can be scary, stressful, and at certain points very overwhelming not only for you, but also for the person needing the health care.  What I have learned after caring for my son who was born at 26 weeks and experiences hydrocephalus (cerebral spinal fluid does not drain properly and requires a shunt to drain the fluid to his peritoneum) is that when he is in the hospital, I never leave him alone.  I have always been deeply involved in his health care, much to some nurses’ and doctors’ irritation…  However, after what we have experienced in the hospital, I believe it is vital that your loved one has an advocate to ensure the best care possible is delivered and also to help when a nurse or certified nursing assistant can’t get to the room quick enough to assist.  For example, if your loved one is receiving intravenous antibiotics, which can cause explosive diarrhea or potentially life threatening allergic reactions, sometimes it can take 5 – 15 minutes for someone to respond to a call button. By that time the situation can be much worse if your loved one is alone.

During one hospitalization, my son developed Red Man Syndrome, which is a sudden allergic reaction to vancomycin.  One minute he looked fine and literally two to three minutes later, he was red from his chest up to his forehead.  After pushing the call button and waiting one minute with no response, I ran to the nurses’ station, where no one was there, found a nurse down the hall and demanded to have the IV stopped.  The nurse had the nerve to argue with me that she didn’t think my son was having an allergic reaction.  I demanded again to have the IV stopped and for her to call the doctor.  While she was calling the doctor, I googled allergic reactions to vancomycin and discovered Red Man Syndrome where 47% of people receiving IV vancomycin develop the allergy.  When the nurse came back, I showed her the information and she was shocked.  I’ve even had to ask phlebotomists (technicians who draw blood) to put gloves on before they take blood or start an IV on my son.

The unfortunate reality of what happens in hospitals is that many staff are overwhelmed, may have had a mediocre education, or perhaps chose health care for less than authentic reasons.  I have witnessed nurses purposely medicate a loved one in order to make their day more manageable.  I have personally experienced less than adequate health care while hospitalized for preterm labor and miscarriage, and I look back now realizing that these events occurred while I was alone.

Here are some helpful hints to prepare for a potential hospitalization:

Do your homework about your local hospitals. The Joint Commission is an independent, non-profit organization that accredits and certifies over 20,000 health care facilities in the nation.  They have an online “Quality Check” tool where you can see how your local hospitals are rated (http://www.qualitycheck.org/consumer/searchQCR.aspx). Another safety rating organization called the Leapfrog Group is composed of a group of large employers that came about to discuss how they could work together to use the way they purchased health care to have an influence on its quality and affordability.  They collect data on hospitals all over the nation and produce a Hospital Safety Survey that consumers can check (http://www.leapfroggroup.org/).

Evaluate your doctors and health care staff.  Do they listen?  Do they respond in a timely manner?  Do they treat you with respect and compassion?  Do they empower you to manage your own health care?  Are they open to holistic options and discuss the importance healthy nutrition and exercise?

Empower yourself with information about any diagnosis your loved one may experience, treatment options, and any local, state or national organizations specializing in that health condition.  Your state Family to Family Health Information Center can help you with that (http://www.familyvoices.org).  PAVE supports the WA State Family to Family Health Information Center and you can contact Jill McCormick, the Program Director at JMcCormick@wapave.org .

One of my colleagues at PAVE shared this helpful hint:  Have an overnight bag packed and in the trunk of your car because you never know when you might have a medical emergency with a loved one.

Establish a local network of friends and family members who can support you when you need a break.

Ask questions to medical staff about what drugs or procedures are being used, why, and any side effects.  Insist they wash hands when they come in the room or use gloves.  Understand there is a reason it is called “the practice of medicine.”

Use medical alert bracelets to identify allergies, implanted devices or diagnoses.  These tools can be vital in alerting emergency personnel if you or your loved one is unconscious.

Complete your own advance directive and help your loved one complete it as well.  After experiencing the tragic death of my mother who did not have an advance directive, my sister and I had to witness her suffer because her husband insisted on ineffective life support.  My son and I have completed ours and we carry them with us.

According to the Leapfrog Group, “there are more deaths in hospitals each year from preventable medical mistakes than there are from vehicle accidents, breast cancer, and AIDS.”  During my son’s last hospitalization in 2012, my father who was, at the time, CEO of Providence Alaska Medical Center, leaned over to me while we were in the emergency room and whispered, “Don’t leave him alone.”  So I didn’t. And I will not. Not for as long as I live.

 

Healthcare in Transition

Posted on by Nicol Walsh

There are many transitions in the life of a child impacted by disabilities.  One transition that is often set on the back burner is the medical transition from pediatric to adult care.  This transition can be significant for a young adult with developmental or intellectual disabilities because they then become the individual responsible for their own care and for communicating their needs to their new physician, who may or may not have worked with an individual with an intellectual disability before.

It is important for these families to check with their child’s pediatrician at or around age 15 to see if their practice has transition planning and a physician that they work with.  If there is not a system already in place at your doctor’s office, you’ll need to do the work yourself.  The key for any parent or guardian is to stay informed and to work with your teen on how to communicate with the medical staff at the clinic.  If you have a young adult that is non-verbal or has very little language mastery, you can make a huge difference in youth participation by using a them to say how they are feeling, what they need, and any questions they may have that can be worked out ahead of time.  A good tool to bring to each appointment is an information pager that says who they are, ID numbers, insurance numbers, what their medical conditions are, what their medications are, unique issues to watch out for, and the concerns and/or reasons for the visit is also a good tool to bring to each appointment. To help lessen anxiety and help with communication, talk with your youth ahead of time, practice what to talk about, what questions they might ask and what the appointment is going to look like.  There are tools online that help with communication and getting ready for a doctor’s visit.  One very good tool is at http://hctransitions.ichp.edu/gladd/  They suggest using an acronym “GLADD” to help individuals remember important ways of letting medical staff know what they need and what is important.

GLADD stands for:

G(ive) – Give information about how you are feeling and what you have done to stay healthy

L(isten) – Listen carefully to your health care providers and learn to

A(sk) – Ask your doctors the questions you have about your health

D(ecide) – Decide at every visit with the healthcare professional decisions need to be made about what to do next

D(o) – Do your part in following the plan.

This web site has a lot of interactive tools and videos that are great for modeling with youth and helping them hear from others in their situation.  Other such tools can be found at: http://healthytransitionsny.org   and at http://cshcn.org/teens/
If your teen or young adult feels the need for support while in the doctor’s office they will need to sign a release giving their guardian or caregiver permission to be a part of the office visits, allowing you to to receive information concerning any treatment plan.  From age 18 on, the young adult will be asked to sign off on any medical treatment or services they may require, including medication, surgeries and therapies. Because of this, it’s important to research adult providers, and even visit their offices, to see if they have worked with individuals with complex needs, have a good referral process, and understand the complexities of working with adults with developmental/intellectual disabilities.  Just as you were an advocate for your child in the school system, it’s just as important to stay connected in the medical system as well.