Families and Youth Have a Voice on Mental Health Matters Through FYSPRT

A Brief Overview

  • FYSPRT (pronounced fiss-burt) is a hard acronym to learn, but it’s worth the effort for families and young people who want to talk about improving mental healthcare systems.
  • Here’s what FYSPRT means: Family members, Youth and System Partners (professionals) get together at a “Round Table” (meaning everyone has an equal voice) to talk about issues related to emotional distress, mental illness and/or substance-use disorder. All participants share ideas about what helps and what could make things better.
  • The Washington State Health Care Authority (HCA) provides a map of the 10 FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.
  • FYSPRT began after a class-action lawsuit against the state, TR v Dreyfus. The litigation resulted in development of the state’s out-patient mental-health services program for youth—Wraparound with Intensive Services (WISe).
  • FYSPRT is a place where families provide feedback about WISe, but all community members are welcome—regardless of age or agency affiliation.
  • Some regional FYSPRTs sponsor separate meetings and social events for youth.

Full Article

Parents and young people who struggle with emotional distress, mental illness and/or substance-use disorder can feel powerless to affect change in a complicated medical system. The Family, Youth and System Partner Round Table (FYSPRT) provides a meeting space for family members and professionals to talk about what’s working and what isn’t working in mental healthcare. The groups also provide informal networking and can provide ways for families to meet up and support one another under challenging circumstances.

The state sponsors 10 FYSPRT groups to serve every county: A list of the groups and which counties they serve is included at the end of this article. Each group reports to a statewide FYSPRT, which provides information to state government to influence policy. The Washington State Health Care Authority (HCA) provides a map of the FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.

FYSPRT began as part of a class-action lawsuit against the state, referred to as TR v Dreyfus. The litigation began in 2009, and settlements were mediated in 2012-13. The federal court found that Washington wasn’t providing adequate mental-health services to youth and required that the state start delivering intensive community-based mental-health treatment. The state responded by developing the Wraparound with Intensive Services (WISe) program for youth under 21 who are eligible for Medicaid. WISe teams provide a wide range of therapies and supports with a goal to keep the young person out of the hospital, which costs more and can be traumatizing.

Young people under 18 who need residential care are referred to the Children’s Long-Term Inpatient program: PAVE’s website provides an article about CLIP.

To provide accountability for the delivery of WISe services, the state created FYSPRT as a forum for families to provide feedback about how the program is working. The mission is to provide an equal platform for everyone within the community to strengthen resources and create new approaches to address behavioral needs of children and youth.

 

FYSPRT provides a space where youth impacted by behavioral health issues and their family members can share ideas about what works well and what would work better. The FYSPRT model is based on the belief that everyone’s unique perspective is equally important, and everyone is invited. For many parents and youth, FYSPRT becomes a place to bond and connect to support one another. Some regional FYSPRTs include separate meetings for youth, and those groups can become a key social outlet.

 

FYSPRT meetings are open to all interested community members. Each community has unique participants depending on what agencies work in the cities and towns within the region.

Staff who serve families through WISe are key participants. Other attendees are case managers from the state’s Medicaid-provider agencies, behavioral health counselors, foster-care workers, staff of homeless programs and staff and volunteers from affiliates of the National Alliance on Mental Illness (NAMI). Other participants are leaders of support groups for youth in recovery or working with issues related to gender identity or sexuality. PAVE staff are regular attendees in many regions, and PAVE manages the Salish FYSPRT program.

Every area of the state of Washington has its own FYSPRT, overseen by the Health Care Authority.  Each of the ten FYSPRT regions is comprised of a single county or up to eight adjoining counties. In order to create greater participation from the general public, transportation and childcare stipends are available for families and youth in most areas. Some groups provide free meals for everyone and/or gift card incentives for the families and young people who attend.

Here are links to each regional FYSPRT’s website and a list of the counties each represents:

Great Rivers Regional FYSPRT – Cowlitz, Grays Harbor, Lewis, Pacific

HI-FYVE – Pierce

King County’s Family Youth Council – King

North Central Washington FYSPRT – Chelan, Douglas, Grant, Okanogan

North Sound Youth and Family Coalition – Island, San Juan, Snohomish, Skagit, Whatcom

Northeast FYSPRT – Adams, Ferry, Lincoln, Pend Oreille, Spokane, Stevens

Salish FYSPRT – Clallam, Jefferson, Kitsap

Southeast FYSPRT – Asotin, Benton, Columbia, Franklin, Garfield, Kittitas, Whitman, Yakima

Southwest FYSPRT – Clark, Klickitat, Skamania

System of Care Partnership – Mason, Thurston

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

 

Children’s Long-Term Inpatient Program (CLIP) Provides Residential Psychiatric Treatment

A Brief Overview

  • CLIP serves children ages 5-18 by providing residential mental-health treatment for a long-term stay that usually lasts 6-12 months. Read on for more information about CLIP eligibility and how to initiate a referral.
  • Governor Jay Inslee in December recommended $675 million in new funding for behavioral health improvements statewide, and policymakers are working on a variety of bills during the 2019 legislative session. Families can contact lawmakers to participate in advocacy.
  • The state has a Stakeholder Advisory Group discussing issues related to Parent-Initiated Treatment. A group of engaged parents participates in a conversation on a Facebook page called Support SB 5706.
  • Studies show that 1 in 5 children will suffer from mental illness. PAVE has additional articles and webinars about mental health education in school, suicide and Social Emotional Learning.

Full Article

Families have few options to help a child with a psychiatric illness that makes in-home, community-based care unworkable. Local hospitals are designed to provide crisis care and generally do not keep a patient for mental health treatment and recovery beyond a few days or weeks. Sometimes those short hospitalizations are not long enough to offer true stability that allows a child to return to school and life with successful outcomes.

One choice is to apply for the Children’s Long-Term Inpatient Program (CLIP), a state program that manages 89 beds in five locations throughout Washington. Most CLIP referrals are for children with Medicaid—public health insurance. Families with private health insurance have access to CLIP but may be referred first to private facilities for long-term, inpatient care. Medicaid is the payer of last resort.

Who is Eligible for CLIP?

  • Youth ages 5 to 18
  • Legal residents of Washington State
  • Youth diagnosed with a severe psychiatric disorder
  • Youth possessing a risk to themselves or others
  • Youth who warrant care under the supervision of a psychiatrist because of grave disability due to psychiatric illness
  • Youth who are not successfully treated through community-based mental health resources

CLIP serves children ages 5-18 by providing residential mental-health treatment for a long-term stay that usually lasts 6-12 months. Please note that eligibility for CLIP ends on the child’s 18th birthday.

Parents/legal guardians engage with the treatment team while the child is at the CLIP facility. The goal is to help the child stabilize and provide the family with the tools needed for a successful return to the home, school and community. Children attend school while at CLIP, and teachers manage any Individualized Education Program (IEP) or Section 504 plan that travels with the student from the local district.

Parents and legal guardians can refer children to CLIP by applying through one of the regional committees positioned throughout the state. Contact information for regional committee leadership is available through the CLIP website. The regional committee meets with the family to discuss the case and determine whether to refer the case to the CLIP Administration for review. The state committee then determines whether to approve the case for CLIP. Sometimes a child is put on a waiting list for an available bed.

Please note that families need an organized set of medical and school paperwork to complete CLIP applications. Refer to PAVE’s article about document management for guidance about how to create a care notebook or other filing system for this and other purposes.

The regional CLIP committee includes care providers from managed care organizations and other agencies that may provide additional support and resources to the family, regardless of whether a CLIP referral is recommended. Generally, the committee determines that all community-care options have been exhausted before recommending a more restrictive placement through CLIP. The team will also make a recommendation based on whether the child is likely to benefit from the therapeutic program, which is mental-health based and may not be a good fit for an individual with a severe form of developmental or intellectual disability.

The largest CLIP facility is the Child Study and Treatment Center (CSTC) in Lakewood, adjacent to Western State Hospital. CSTC provides 47 beds in cottages that house children in groups by age. Additional options include:

  • Burien, Sunstone Youth Treatment Center: 10 beds
  • Tacoma, The Pearl Street Center: 12 beds
  • Spokane, the Tamarack Center: 16 beds
  • Yakima, Two Rivers Landing: 4 CLIP beds in a facility with 16 total youth beds

Parents can initiate a referral, but children over Washington’s Age of Consent (13) must volunteer to go to a CLIP facility unless a county Designated Crisis Responder (DCR) determines the child meets the state’s criteria for a 180-day commitment under the Involuntary Treatment Act (ITA). Any persons over the age of 13 in Washington must be imminently threatening to harm themselves or others or be severely gravely disabled, in a state of extreme psychiatric deterioration, to receive an ITA admission to any inpatient facility.

Wording from Washington’s gravely disabled statute is as follows: “Manifests severe deterioration in routine functioning evidenced by repeated and escalating loss of cognitive or volitional control over his or her actions and is not receiving such care as is essential for his or her health or safety.”

State lawmakers are engaged in work to consider changes to the ITA law, and families are invited to contact policymakers if they have thoughts or concerns to share about this initiative or other activities related to treatment access, Age of Consent laws or Parent-Initiated Treatment. Governor Jay Inslee in December recommended $675 million in new funding for behavioral health improvements statewide.

CLIP is funded with state and federal dollars. A child’s Medicaid case manager through a Managed Care Organization (Molina, Community Health Plan of Washington, Coordinated Care, Amerigroup or United Healthcare) can provide guidance about CLIP applications. Families also can request further information from a care management team through the Wraparound with Intensive Services (WISe) program, which provides outpatient care coordination for children with intensive psychiatric needs in various Washington communities. A CLIP referral often happens because WISe was unable to help the child stabilize in the home.

WISe is managed through the state’s Health Care Authority, and HCA is another source for information about various options for mental healthcare for Medicaid-eligible children, youth and families. Families can reach out to the HCA for further information.

 

 

 

Holidays Can Hurt When Trauma is Present

Songs in the store tell us this is the “hap/happiest” time of the year, but for people who have experienced trauma this season can trigger difficult emotions. For children with disabilities, those emotions can be particularly complex and confusing. Unexpected behaviors might show up at home or at school, especially when routines are disrupted.

Helping children understand their emotional responses to difficult circumstances is part of education, and schools are adopting new strategies around Social Emotional Learning (SEL). Social and emotional skills can be analyzed through educational evaluations, and the Individualized Education Program (IEP) establishes specific programming and goals around SEL for children with deficits in those areas.

A Functional Behavior Analysis (FBA) is another tool for determining what supports a child needs to behave in ways that are “expected” for success at school. The FBA leads to design of a Behavior Intervention Plan (BIP), which provides specific guidance to school staff for positively reinforcing expected behavior.

When designing behavior plans, parents and school staff may need to discuss whether unexpected behaviors are the result of trauma and/or overwhelm. Strategies for helping may need to consider whether rewards and punishments will work if behaviors are related to emotional dysregulation and fight/flight/freeze responses to internalized and persistent anxiety. Formed Families Forward, a community and family-focused resource center in Virginia, provides a video series to help families and professionals better understand trauma and how to respond. The agency’s website also provides a resource collection related to trauma-informed approaches in multiple environments.

The Office of Superintendent of Public Instruction (OSPI), which oversees Washington school districts, has developed curricula to help school staff teach children how to understand their emotions and become more skillful in social communication. PAVE’s website includes a three-part series of articles about the state’s initiatives and research related to SEL. Those articles include practical tips and a variety of additional links to further information.

Everyone can help create a calm environment. Best practice is to exhale long and slow, triggering the body’s relaxation response. Your feeling of calm can help someone else relax. Try it! Take 5 breaths, focusing on a long, slow exhale through your nose. Notice how you feel. If you feel calm, consider sharing that feeling with someone else through a loving smile, soft eyes or even a hug! Even if this is not the hap/happiest time of your year, give yourself permission to relish a simple moment of contentment or curiosity when you pause to breathe.

Hospital to Home

Without a doubt, one of the most stressful situations you can face as a parent is the hospitalization of your child.

Whether it is a planned stay, like a surgery, or an unplanned event, parents are bombarded with a huge number of shifts in their day-to-day life and priorities. Parents are also expected to step in and provide a lot of the care a child receives in the hospital once they are back home and that can be extremely overwhelming. While the purpose of this article is for families with a child who is medically fragile or has a life-threatening diagnosis, it is also meant to offer ideas for the unexpected and planned hospitalizations that can occur in all our families. Hospitalization and Emergency Room (ER) visits for many families with a child who is medically fragile or has life-threatening diagnosis is an ever-present possibility. The hope is to provide some tool kit examples and some ideas to ease the transition back home.

As a parent who has spent a lot of time in ERs, Intensive care units, and the medical floor during hospital stays, I have found that I was better prepared for what was going on and the transition back home when I asked questions and shared what home was like with the doctors, nurses, and therapists. I also found that the hospital social workers were my best friends when it came to asking about support for me as a parent. Even before you talk with the discharge planner check in with the social workers. They often have information about support groups, outside therapists/home help, vouchers, and financial supports that you don’t have the time to think about while your child is hospitalized.

Building relationships and the supports for you with the staff caring for your child can help ease some of the overwhelming confusion.  Especially when there is an extended medical emergency or complex surgery with a long recovery. Keep a small notebook to write down and track what doctors and nurses do, and record the answers to your questions when you ask them. If you have a smart phone, there are multiple apps for this on both iPhone and android platforms. Most important of all is making sure you take time for you and self-care.  This is often the hardest part and frequently we know it’s what we need to do and focus on other pressing priorities.  Remember, when you take time to renew it helps you be there for your family. While your child is hospitalized, the nurses are there to take care of them, so find ways to re-charge. Take breaks and find quiet time for yourself because once you get back home you are often the nurse and parent.

Vital links for your family and your child:

This first link is from the Agency for Healthcare Research and Quality (AHRQ) and takes you to a website that gives some good basic information and links to checklists. After clicking on the link below this text, go to the middle of the page. There will be a link to the “Be Prepared to Go Home Checklist and Booklet” is a good general tool to use. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy4/index.html

The second link for a Neonatal Intensive Care Unit (NICU) babies or Pediatric Intensive Care Unit (PICU) babies and is really targeted to supporting parents of infants. https://www.ahrq.gov/professionals/systems/hospital/nicu_toolkit/nicu-packet.html

The last link is a great way for families of children with complex medical needs to prepare ahead of time just in case. This link is for the Family Voices collaborative care notebook template that has places for all of the information that goes with the care of your child. This tool can be used to provide information to the hospital and ER. Some families have used the child sheets or the emergency information sheets as a one pager to take with them to the ER or for extended hospitalization. This sheet provides the multiple doctors and staff that you see with consistent accurate information. There are also schedules that a child might need in their care and they can be used to record care needs in the home. http://www.fv-ncfpp.org/files/5813/0721/3621/Care_Notebook_-_entry_enabled1_reduced.pdf

These tools have been a great help in supporting my family with multiple hospitalizations and it is my hope they will be useful for you too!