Webinars offer Parent Training to Support Behavior during Continuous Learning

While school facilities are closed because of COVID-19, families impacted by disability face complex challenges. For some, children’s difficult behaviors are a regular concern. According to the Centers for Disease Control and Prevention (CDC), stress and anxiety in children and youth may show up through unexpected or maladaptive behaviors. Those behaviors might get worse because of fear, isolation, and disrupted lives.

Meanwhile, some of the help that used to be there is gone. At school, students may have gotten 1:1 support or direct instruction to encourage behavioral skill-building. Those aspects of a special education program might be difficult or impossible to provide during social distancing.

While students are learning from home, parents can request individualized support from the school to support behavioral expectations, if behaviors have educational impact. Parent training can be a related service in a student’s Individualized Education Program (IEP). As always, family caregivers can request an IEP meeting to discuss options to support academic and behavioral goals and expectations.

If the student has a Behavioral Intervention Plan (BIP), that document might hold clues about strategies most likely to work. For more ideas about how to communicate with the school in reviewing a student’s program and perhaps also designing a temporary Continuous Learning Plan, parents can refer to PAVE’s article: IEP on Pause? How to Support Continuous Learning with School Buildings Closed.

To generally support caregivers in their various roles during COVID-19, Washington’s Office of Superintendent of Public Instruction (OSPI) offers a three-part webinar designed for families to help with behavior in continuous learning environments. The webinar has been recorded and uploaded to YouTube in sections, so families can access the content at their own pace.

The webinars are moderated by Lee Collyer, OSPI’s program supervisor for special education and student support. Collyer, a parent, describes his own challenges during the pandemic alongside ideas from research-based sources. Families are invited to send questions and comments to lee.collyer@k12.wa.us.

In various forums, Collyer has described his investment in fostering positive behavioral supports for students in order to reduce disciplinary actions. In a May 13, 2020, OSPI webinar about Mental Health and Safety, Collyer said, “My fear is that we’re going to try to discipline our way out of trauma.”

Following is a brief description of each segment of the three-part webinar series, with a link to each specific webinar. If you start with the first one, you will have the option to stay connected and flow through all three. Each segment is 20-25 minutes long, and the first one includes some background information about OSPI and Collyer’s role.

Supporting Positive Behavior in Continuous Learning Environments – Part One

Collyer begins the series by sharing OSPI’s official statements related to mission, vision and equity. He offers reassurance to parents that everyone is learning something brand new together, without time for proper training, and that “We should not let pressure from schools, teachers or school communities dictate what works for our family and what kind of learning we are prioritizing during this time.”

Collyer talks about the value of learning that is imbedded in everyday activities and part of family routines. He shares insights from psychiatrist Bruce Perry and psychologist Ross Greene, both widely regarded authors who apply their research to inform parents. Their names are linked here to practical articles about supporting positive behavior, and both are easily searchable to find additional materials.

The OSPI webinar includes signs of stress and anxiety to consider. Collyer recommends behavior solutions based on skill building: If children do not know how to do something (like behave), the answer is to teach, he points out, not punish. The segment ends by explaining how behavior serves a function and understanding that function is key to reducing escalations.

Supporting Positive Behavior in Continuous Learning Environments – Part Two

The second segment begins where the first leaves off, by discussing the functions of behavior and how to identify them and intervene early. Pre-teaching skills and reinforcing positive behaviors over negative ones in a 5:1 ratio is encouraged: For the best outcome, catch a child doing what is expected and provide encouragement five times more often than calling out an unexpected behavior.

The second segment also provides some specific strategies for home/school communications. Collyer describes the difference between a consequence and problem-solving and offers specific strategies for parent/child problem-solving.

Supporting Positive Behavior in Continuous Learning Environments – Part Three

The third segment begins with information about how a crisis might escalate and how reason and logic are compromised when fear and frustration highjack a person’s response system. Adults may need to consider their own escalation cycles and develop a personal plan for self-control to support children, Collyer says.

He describes how children might be uneven in their development of cognitive versus social-emotional skills and how that might create confusion about the best parenting strategy. How to set limits with considerations for trauma and ways to shift from negative to positive interventions are additional strategies provided in the final segment of this webinar series.

For additional resources from OSPI, visit the page for Special Education Guidance for COVID-19.

 

Adolescent Health Care Act Provides Options for Families Seeking Mental Health and Substance Use Help for Young People Resistant to Treatment

A Brief Overview

  • The Adolescent Behavioral Health Care Access Act, passed into law by the Washington Legislature in 2019, gives parents and providers more leverage in treating a young person who won’t or can’t independently seek medical help for mental illness and/or substance use disorder.
  • The Washington State Health Care Authority (HCA) in March 2020 launched several website links with information about the new law, which includes an option for Family Initiated Treatment (FIT).
  • The Washington State Hospital Association on July 9, 2019, provided a slide presentation describing the law’s history and its primary features.
  • A place to connect with other families concerned about adolescent mental healthcare access in Washington State is a group called Youth Behavioral Healthcare Advocates (YBHA-WA) on Facebook. Included on the page are handouts that summarize key aspects of the new law. 

Full Article

Getting mental health help for a youth in crisis can be complicated, frustrating and frightening.

Mental Health America ranks states based on the incidence of mental illness and access to services. The agency’s 2020 rankings list Washington in the 43rd position, based on various measures that indicate a higher prevalence of mental illness and lower rates of access to care.

Often a barrier to treatment is the youth, who may not be able to see a problem or want to get professional help. Parents often struggle to navigate systems that must balance a young person’s autonomy with concern that they may not be able to make good decisions because of their development, specific illness circumstances or symptoms that impact the brain.

In Washington State, the age of medical consent is 13. That means that a person 13-17 years old can independently seek medical treatment, without the consent or knowledge of parents.

Age of consent laws also have meant that Washington youth could say no to mental health or substance use treatment, regardless of whether parents and providers agreed that such treatment was necessary to protect the safety and well-being of the adolescent.

A law passed by the Washington legislature in 2019 gives parents and providers more leverage when a young person is struggling with a mental illness or substance use disorder and won’t independently engage with treatment. The law does not limit an adolescent’s ability to initiate treatment on their own.

A January 8, 2020, article in Crosscut profiles several families impacted by the new law. “Until the new law,” the article states, “parents often were shut out of their teenager’s care and treatment plans and couldn’t push a teen toward necessary outpatient or inpatient care without their consent.”

The Adolescent Behavioral Health Care Access Act enables parents/caregivers to bring a child for inpatient or outpatient treatment without requiring consent from the child, ages 13-17. The law includes elements introduced by the state Senate and House of Representatives, which originally titled the bill as HB 1874.

Passage of the law was a win for the Children’s Mental Health Work Group, which studied and reviewed recommendations from a stakeholder advisory group authorized by the 2018 legislature. The final version of the law included input from family members, youth, clinicians, hospital staff and many others who met dozens of times. A June 13, 2019, slide presentation available online provides additional history and detail about the work group and its recommendations: Family Initiated Treatment and Engaging Families in Treatment of Youth. The webinar with sound is available on YouTube.

The 2020 legislature is considering amendments to the law, and the Children’s Mental Health Work Group continues to meet to consider proposals to clarify provisions that relate to residential treatment and referrals for Wraparound with Intensive Services (WISe).

“Parent” is broadly defined

The 2019 law expands the definition of parent to include a wide range of family caregivers, guardians and others who have authority to initiate treatment. The Revised Code of Washington (RCW 9A.72.085) provides standards for “subscribing to an unsworn statement” that can apply to a caregiver initiating treatment. 

Note that parents retain the right to make medical decisions for children younger than 13, and adults 18 and older are responsible for medical decision-making if there is no guardianship.

A substantive change with the 2019 law is that providers may share mental health information with parents without an adolescent’s consent, if the provider determines that information sharing with family is in the best interests of the adolescent patient. A list of information-sharing guidelines is included below.

How Family-Initiated Treatment Works

If a parent/caregiver believes that an adolescent requires mental health or substance use disorder treatment, the adult can escort the young person to an inpatient or outpatient treatment facility even if the adolescent doesn’t readily agree to go.

A provider will assess the adolescent and consider information from the family to determine whether treatment is medically necessary. An adolescent’s refusal to engage with the provider cannot be the sole basis for refusing to treat.

An inpatient facility can detain the adolescent under Family-Initiated Treatment (FIT) if medically necessary. Note: another option could be detention under the Involuntary Treatment Act (ITA), if the adolescent is determined to be gravely disabled or at imminent risk of self-harm or harm to others.

If medical necessity is found by an outpatient provider, a counselor is limited to 12 sessions over 3 months to attempt to work with the adolescent. If the young person still refuses to engage with treatment, then the period of Family-Initiated Treatment with that provider ends.

State laws continue to encourage autonomy for young people, but family engagement is encouraged. According to the Revised Code of Washington (RCW 71.34.010):

 “Mental health and chemical dependency professionals shall guard against needless hospitalization and deprivations of liberty, enable treatment decisions to be made in response to clinical needs in accordance with sound professional judgment, and encourage the use of voluntary services. Mental health and chemical dependency professionals shall, whenever clinically appropriate, offer less restrictive alternatives to inpatient treatment. Additionally, all mental health care and treatment providers shall assure that minors’ parents are given an opportunity to participate in the treatment decisions for their minor children.”

Guidance for Information Sharing

Federal law, 42 CFR Part 2, restricts information sharing related to substance use, and clinicians cannot share that information without a patient’s written consent, regardless of whether the substance use co-occurs with mental illness.

Providers have discretion in determining what information about mental health diagnoses and treatment is clinically appropriate to share with parents of an adolescent 13-17. A provider retains discretion in withholding information from family/caregivers to protect an adolescent’s well-being. In general, the Adolescent Behavioral Healthcare Access Act encourages sharing information to support collaboration between the clinical setting and home. Specifically, providers and families are encouraged to discuss:

  • Diagnosis
  • Treatment Plan and Progress
  • Recommended medications, including risks, benefits, side effects, typical efficacy, dosages and schedule
  • Education about the child’s mental health condition
  • Referrals to community resources
  • Coaching on parenting or behavioral management strategies
  • Crisis prevention planning and safety planning

Information about state laws related to Behavioral Health Services for Minors is available through the Washington State Legislature website under RCW 71.34.

Information about child and youth behavioral health services in Washington State is available from the Health Care Authority (HCA).

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

Transition from Child Based to Adult Based Services in Behavioral Health

From Child to Adult

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

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

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

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

Things to look at when planning for transition:

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

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

World Psychiatry

US National Library of Medicine

Mental Health Services for Young People

Transition Between Child and Adolescent Mental Health 

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!