Peggy Dolane

New bills come fast and furious at the beginning of the legislative session. Things stay in flux – that is everything is on the table – until *MONDAY* February 15, 2021 which is when a bill must have passed through it’s “chamber of origin” that is either the House or Senate. Until then, you can help raise awareness with all legislators about why these bills are important to our families. Please check to ensure you’ve signed in “pro” on all of these!

4 bills — 4 links to click!

HB 1182 988 Call Centers

Rep Tina Orwall’s bill creates a high tech crisis call center system, mobile rapid response crisis teams and crisis stabilization enhances and expands behavioral health and suicide prevention crisis response services units, short-term respite facilities, peer-operated respite services, and behavioral health urgent care walk-in centers across the state and in collaboration with the tribes.https://app.leg.wa.gov/pbc/bill/1182…

SB 5412 Family Care Act (for Azucena)

Sen. Judy Warnick’s bill facilitates supportive relationships with family and significant individuals within the behavioral health system. The founding principles for this bill were created by members of this group. https://app.leg.wa.gov/pbc/bill/5412…

SHB 1086 State behavioral health ombuds

Rep Tarra Simmons’ bill creates the state office of behavioral health consumer advocacy.
https://app.leg.wa.gov/pbc/bill/1086…

HB 1444 School counselors

Rep Alicia Rule’s bill provides trauma-informed counseling and supports to students who were impacted by the COVID-19 pandemic and is supported by the Washington State PTA. Governor Inslee cut school counselor funding in 2020 as a knee-jerk pandemic response.
https://app.leg.wa.gov/pbc/bill/1444…

What does it mean to involve families in our children’s behavioral health care and why is it important? 6 mothers of struggling Washington State children, who were failed by our community safety net, met on December 26 and drafted a bill proposal. These values became the first draft of the Family Cares Act, SB 5412.

[REMINDER: this is a draft. The resulting bill, SB 5412 can be found here.]

Proposed bill name:

Behavioral Health Family Rights Act

Reason for Bill:

Every patient has the right to have a caring, compassionate family member involved in and advocating for their best treatment, based on their lifelong role in the person’s life and their personal knowledge of their past and present welfare.

Families who desire to be engaged in their children’s Behavioral Health Care should be included wherever possible. Parents should be encouraged to be actively engaged in their children’s BH care including decision-making and have appropriate decision-making rights.

The State should not bring harm (trauma) to the family. The family is in fact a community of persons whose proper way of existing and living together is a basic human right.

Parents/Guardians are the foundation for decision-making about Education and Healthcare, regardless of whether those decisions relate to physical, mental, behavioral or substance use disorder (SUD) treatment.

The Liberty of a Parent to direct the upbringing, education, care, and welfare of the parent’s child is a fundamental right.

All members of a family have an equal right to safety and the right to participate in family life on a basis of equality without fear of loss of safety or residence. (Not a CPS involved system)Although perhaps unintended, a consequence of current regulations and practices has divided families and created barriers to family engagement to such an extreme that parental rights and responsibilities sometimes are severed without any evidence of abuse or neglect in order for children to access an appropriate level of services.

This bill intends to encourage and support well bonded families.

Through the support of State Agencies, family rights and responsibilities of parents should be instrumental in establishing the residence of the child, supervision of the child, schooling and education of the child, and decision-making in Physical Health, Mental/Behavioral Health, SUD, and Medication Management matters for the child.

Definitions:

Parent: as referenced in Adolescent Behavioral Health Care Act (Parent/Caregiver)

Children: Minor adolescents ages 13-17, young adults 18-25, dependent adults 26+ who are under a parent/caregiver guardianship.

[Comment: High needs adults with disabilities, such as those in DDA Supported Living , may lack emotional self regulation skills until age 30. Yet they may not have a guardianship that long. Is guardianship the right avenue to cover those in this situation?]

Family member: any person living under the same roof who is either dependent upon or contributing care for the safety and welfare of the group.

Behavioral healthcare symptoms for minor children 0-18 includes mental illness, substance use or abuse, and developmentally-based emotional regulation challenges that may or may not resolve with maturity.

Behavioral health early intervention and prevention includes occupational and physical therapy, as well as educational supports, evidence-based mental health and SUD interventions, as well as basic health supports for diet and exercise.

Essential bill components:

• Unless there are formal findings of abuse or neglect, all service systems, including those related to behavioral health, should support a family’s decision-making process, including the execution of existing parenting plans. Family Rights are supported by all state agencies that touch children’s behavioral health, including but not limited to: HCA, DDA, JR, DCYF, OSPI, CPS, Commerce Department, Office of Insurance Commissioner.
• All child-serving departments must evaluate their policies and identify and eliminate those that undermine the integrity and health of the family or discourage family engagement with service providers.
• No policy should encourage division of families in order for an appropriate level of service to become available.
• One size does not fit all in treating children’s behavioral health. The children’s system must not be modeled on adult system assumptions (ex. Richelle’s DDA electronics policy) (???–not sure how this will be worded in the final proposal?)
• Children, Youth, and Family treatment decisions must be based on the best information available as part of an evidence-based intervention (EBI) system. That includes full disclosure or “transparency” of existing clinical information, parental/guardian input, and Mental/Behavioral SUD services.
• Broad education is needed about early warning signs of behavioral health problems in children, especially as they appear in the school setting.
• Parents must be supported by physicians and other child-serving professionals in making decisions on the use of psychotropic medications through informed consent, based on a careful weighing of risks and anticipated benefits.
• Medication use by children must be closely monitored and frequently evaluated, as well as other Mental and BH treatment.
• Child-serving system policies should not interfere with rights of access to treatment or communication between parents, physicians, schools, and other potential support partners.
• Legislative or regulatory actions must be guided by sound scientific research and testimony from well-qualified medical and mental health professionals and families.
• Develop accountability standards and data collection standards to measure prevalence of need for service, gaps, etc.
• The legal system should be employed only as a last result. ex. Medication management should not be handled via At Risk Youth Petitions. Families should not have to engage lawyers to receive behavioral health special education interventions or to prevent the disruption of a family member’s residence by the legal system (ex restraining orders issued against family members by the court in behavioral health situations).
• Foster Care should never be used as a substitute for involuntary inpatient treatment.
• Replace Court-based involvement for youth, such as Juvenile Rehabilitation and At Risk Youth/CHINS, with family-centered behavioral healthcare treatment interventions. All service systems must collaborate to find the best placement and state-supported funding strategy when residential care is medically and/or educationally necessary in light of child and family circumstances. Safety of all family members and the child’s holistic needs for safety, healthcare treatment, and education, must be considered.

Behavioral health advocacy is intense. This week it was like standing in front of a fire hose. Nearly all of the issues below predate the pandemic. Governor Inslee must assume leadership and help guide a path to fixing our broken system. Parents can’t do it alone.

Documenting new evidence of our system in crisis:

• Disability Rights Washington files lawsuit against Washington State DCYF for failures in the foster care system
• King County Prosecutor, Pete Holmes, files with US Supreme Court to give judges ability to overturn state laws and put minors in jail with longer sentences
• HCA still calling WISe voluntary, in conflict with HB 1874 and the TR lawsuit settlement requirement that WISe must be an intensive service.
• Top Medicaid provider says suicidal children have “agency” and must have the right to make their own choices.
• “Troubled teen industry” under fire covered on NPR [https://the1a.org/segments/troubled-teen-industry-paris-hilton]
• Utah legislature considering limits to isolation and restraint in youth behavioral health facilities

Parents in crisis this week

• Suicidal 17 year old’s 5th suicide attempt. Parent must defend herself against a false CPS complaint while being blocked by the treatment center from discussing treatment plans.
• Parents of 16 year old homicidal child are relinquishing custody to CPS wondering if there are any good options for their son
• Parent seeking residential care for suicidal transgender child in transition looking for a referral
• Parents fighting a safety plan for hospitalized suicidal child. Child refusing to go home. Hospital says they will release her to a youth shelter.
• Mom of a child repeatedly restrained in Kindergarten by school staff is now fighting with the district to allow an inclusive middle school placement.
• Kinship grandmother trying to prevent relinquishing custody of her child by obtaining residential care because the child is refusing WISe. HCA has been unresponsive for months.

Other advocacy efforts taken

• Reached out to Attorney General’s office to learn what course of action we can take to hold the HCA accountable
• Called upon my legislators to ask our Governor to call a meeting to address the crisis in children’s behavioral health
• Emailed HCA leadership calling them on the carpet for their bias against residential care and failure to educate the system about HB 1874
• Filed a public records request for HCA internal communications and work output on implementing HB 1874 & 2883
• Reached out to multiple lawyers considering a class action lawsuit or crowd-funding one
• Attempting coalition building efforts with BLM & JR reform constituents
• Organized parents to write in support HB 1086 Creating the state office of behavioral health consumer advocacy passed unanimously in the House Health Care and Wellness Committee.
• Tried to find a way to send books and art supplies to incarcerated youth in Green Hill.
• Helped 2 families draft letters about their family behavioral health crises and ensuing trauma.
• Moderated Youth Behavioral Health Care Advocates of Washington. If you aren’t already a member, please join us!

Eliminating stigma and bias in favor of behavioral health equity and parity must become part of our healthcare agenda if we truly wish to eliminate systemic harm to BIPOC and struggling families.

Are you aware that you hold unconscious judgements about people who have behavioral health challenges that contribute to societal harm of vulnerable families, especially BIPOC ones?

Washington State’s Senate Health and Long Term Care Committee is working on equity and parity, yet behavioral health — which critically contributes to overall health, safety, and well-being of both the individual and family — is not part of the discussion. Local leaders missed critical health outcomes that are disproportionately experienced by BIPOC families who have not received appropriate behavioral health care, e.g.

• teen pregnancy, rape and sexually transmitted diseases
• increased suicidiality
• lower mortality rates
• increased drug and alcohol addiction

This of course doesn’t include homelessness, incarceration, prostitution, and perhaps most devastingly, the destruction of the integrity and safety of BIPOC families.

There are 8 damaging assumptions that our healthcare system and other safety net providers make when it comes to children and youth struggling with behavioral health challenges. These biases undermine the health, integrity and well-being of BIPOC families. Do you hold any of these assumptions?

1. When a child has chronic misbehavior, it’s usually the parent’s fault
2. Child Protective System protects children
3. The Foster Care system protects children
4. The At Risk Youth system protects children
5. Jail is a good thing for a defiant child
6. Behavioral health isn’t a special education issue
7. We can address children’s behavioral health the way we treat adults
8. The system is broken, there’s nothing anyone involved can do

NPR has reported that COVID-19 has exacerbated an already broken children’s behavioral health system. The situation in Washington is as dire as any other state. We are boarding children in emergency rooms because we wait for a crisis to help and lack the intensive services these families need.

When individual rights allow children to be incarcerated instead of cared for, when parents must give up their custodial rights in order to access care for disabled children, when jail is the defacto mental health safety net and children are being boarded in emergency rooms, there is something seriously wrong with OUR progressive values. Why do we believe that someone else would be more capable of caring for behaviorally challenged children than their parents? Foster care is rooted in racism. Juvenile justice is rooted in racism. Individual rights which ignore the fundamental support that families provide dependent children underpin and support these racist systems.

Now is the time to focus on ourselves and have open discussions about how we can navigate the chasm between what we believe is right and what the right believes about us. We must center behavioral health wellness of BIPOC families in our thinking moving forward.

Behavioral health equity and parity must become part of our healthcare agenda if we truly wish to eliminate harm that comes from the stigma associated with behavioral health.

Recently, the American Psychiatric Association apologized for it’s long-standing history of discriminatory practices that have undermined the health, safety and welfare of BIPOC individuals and their families. NPR posted a story about how COVID-19 has exacerbated an already broken children’s behavioral health system. The situation in Washington is as dire as any other state. We are boarding children in emergency rooms because we wait for a crisis to help. Yet the crisis in our children’s behavioral health system has not reached into the awareness of the general public. Why? I blame stigma and the biases that come from that.

How many of these faulty assumptions do you hold? How do these assumptions influence your approach to system reform?

When a child has chronic misbehavior, it’s usually the parent’s fault

• The first place to look for why a child is misbehaving is the parent
• Children can’t be diagnosed with mental illnesses
• It’s acceptable for a teen drug addict to withhold information about their substance abuse disorder from their parents.
• It’s acceptable to have to re-explain the horrors of your child’s situation to each new person you call for help before they decide if they can help
• Parents are not to be believed. Only when a professional witnesses the behavior does anyone take it seriously
• It doesn’t hurt anyone to require endless recounting of traumatic narrative, and youth should be  present when possible.
• Parents don’t have trauma related to caring for their children
• We can only help children who want to be helped
• If you aren’t getting the help your child needs, help is a phone call away

Child Protective Services protects children

• When parents ask for help by describing family violence brought on by a highly dysregulated child, mandatory reporting leads to CPS
• Foster care is a viable alternative to a parent who can’t control their child. 
• When a parent feels unsafe to take a child home where no bed is available, CPS targets removing the healthy children from the home, while offering no intensive treatment for the one with severe emotional regulation issues
• Violent children are not placeable so removal of the other children is simpler
• When children assault their parents, CPS will not intervene

The foster care system protects children

• Legal abandonment of a child is sometimes a necessary step in getting them the “help they need”
• Therapeutic foster care group homes work better than residential treatment
• It’s acceptable to put foster children in offices and hotel rooms instead of providing them therapeutic residential behavioral health care

The At Risk Youth system protects children

• Children are capable of making appropriate mental health decisions
• Children involved in the at risk youth system need a free lawyer, their parents don’t
• A parent with an ARY can get a judge to make their children comply with what’s in their best interest

Jail is a good thing for a defiant child

• Restraint and isolation are appropriate measures in schools
• It’s acceptable to handcuff children who are acting out in school
• We should call the police when a child is out of control
• Juvenile rehabilitation approximates anything equivalent to residential behavioral health care
• Allowing or even advocating your child be arrested and charged will open doors to resources that will help address the child and family’s needs
• Juvenile delinquents need to be punished

Behavioral health isn’t a special education issue

• School refusal isn’t a behavioral health issue
• Emotional regulation issues aren’t behavioral health problems
• ACEs trauma can be overcome by a few outpatient sessions in the early years
• School systems can be trusted to provide appropriate special education interventions for children with behavior disorders.

We can address children’s behavioral health the way we treat adults

• Emergency rooms are the appropriate place to send children who have emotional regulation melt-downs
• Children in treatment don’t need to have their parents involved in treatment with them
• Children are resilient and can tolerate waiting months or years to get appropriate services
• Talk therapy is an effective treatment practice for children with language disorders
• The ITA standards for dependent children and the Crisis Response Workers who evaluate them should be the same as for adults
• Children are resilient. There aren’t long term implications for under-funding schools and the child welfare system
• An intellectually disable child with bipolar disorder doesn’t qualify for disability because the brain injury is a mental health problem
• Teen drug use and mental health are two separate things, so we need different facilities to treat them
• Parents should be grateful to be able to send their children to out-of-state treatments when all else has failed, even though much evidence shows natural support systems are essential to recovery and positive life outcomes.
• Health Care Authority client values don’t need to consider the right of a child to have a family
• Governmental agency personnel are not allowed to advocate for change, even when presented with repeated and consistent testimony that change is needed because current policies and/or resource gaps are causing widespread trauma.
• Any kind of long term residential treatments are abusive and not as effective as less restrictive alternatives

The system is broken, there’s nothing anyone involved can do

• Parents should be satisfied to hear “I’m so sorry you’re going through all of this. The system is broken.”
• There are already enough intensive services in place. Wraparound services are enough to keep high risk children and families safe.
• The legislature can’t prioritize children’s education and behavioral health because there’s no money but we can provide tax breaks for businesses
• There are no long term consequences to our failed behavioral health system
• We can reimburse children’s behavioral health therapists half as much as those who work with  adults (neglecting to realize they are actually more complex than adults because they are still dependent on their parents)
• Children’s behavioral health services are an excellent way for young professionals to learn on-the-job training.
• Frequent staff turn-over is acceptable.
• We don’t have enough money for residential care so we will make up a system that we say is better (WISe) but then not deliver on that promise
• This isn’t my responsibility — this is a problem for another department to fix (i.e. the issue is foster care reform, juvenile justice reform, behavioral health treatment resources, child protective services reform, a developmental disability, etc.)

When your child or family needs immediate help

• For immediate help with a life-threatening emergency: call 911
• For immediate help with a mental health crisis or thoughts of suicide: contact the National Suicide Prevention Lifeline at 1-800-273-8255

Where to Find A Behavioral Health Provider

Medicaid

• Contact your primary care physician to find your local behavioral health provider or
• Contact your Managed Care Organization’s care coordinator (ex. Molina, Premera, Coordinated Care) for a referral
• Washington Mental Health Referral Service for Children & Teens: 833-303-5437

Private Insurance

• Contact the care coordinator for your insurance company (usually found on the back of your insurance card).
• Seek a referral from your primary care physician
• Washington Mental Health Referral Service for Children & Teens: 833-303-5437
• Look for therapy groups in your area. Ex. Mindful Therapy Group has a broad array of providers who offer in-person and telehealth behavioral health services in Western Washington.

Other Resource & Referral Lines

Washington 2-1-1
800-621-4636
2-1-1 connects callers, at no cost, to critical health and human services in their community, such as help with financial needs, or to find the location of the nearest food bank. This is not a behavioral health referral line.

Teen Link
866-833-6546
Teen Link is a confidential and anonymous help line for teens. Trained teen volunteers are available to talk with youth about any issue of concern.

WA Recovery Help Line
866-789-1511
The Washington Recovery Help Line provides an anonymous, confidential 24-hour help line for Washington State residents. This help line is for those experiencing substance use disorder, problem gambling, and/or a mental health challenge. Our professionally-trained volunteers and staff provide emotional support. They can also connect callers with local treatment resources or more community services.

WA Warm Line
877-500-9276
WA Warm Line is a peer support help line for people living with emotional and mental health challenges. Calls are answered by specially-trained volunteers who have lived experience with mental health challenges. They have a deep understanding of what you are going through and are here to provide emotional support, comfort, and information. All calls are confidential.

County Crisis Lines
County Crisis Lines are a good place to start when you aren’t sure if you need to call the police or take your child to an emergency room. They also provide information and referrals once the crisis is over. County crisis lines are available for all Washingtonians regardless of your insurance status or income level. For a complete list of crisis lines by county visit HCA.

I’ve sat in a lot of behavioral health policy discussions where providers justify adding yet another way for children to access behavioral health care by endorsing the “no wrong door” approach. An effective no wrong door approach would connect any person seeking help for a child (including their parent) to an robust system of care. Instead,in Washington State where effective behavioral health services are in scarce supply, the no wrong door approach puts the burden on families navigate and adds to family trauma.

What if all of the doors are wrong doors?

• Referral sites are not up-to-date, they either don’t work or funnel you to the wrong response. The system changes so rapidly that parents can’t count on a service they used being available for a younger child.
• Parents spend days making calls and transferred from person to person. Even insurance company provider networks are not up-to-date so it can appear there is a provider where there are none.
• Parents have to answer dozens of questions to get an appropriate referral. Every single new person a parent talks to requires the parent to repeat the problem, and frequently have to defend themselves and their actions — needlessly re traumatizing them. Several parents describe the experience of making calls for help is to experience a crisis in and of itself and causing panic attacks.
• Referral sources frequently simply hand out another long list of providers to call only for families to find that none of them are accepting new clients.
• Even when records are available, parents are expected to repeat their story verbally for clinicians who ask for paperwork to be completed for a system that never refers to them.
• No clear referral path leads to an inequitable system. Private educational consultants are paid thousands of dollars (typically $5,000-$10,000/referral)so that wealthy parents can find resources.
• No wrong door means parents have to talk to school personnel, judges, therapists, receptionists, intake personnel, designated crisis responders, and the police and still not get the right referral. Every single person you seek help from is responsible for making a judgment about the family.
• Children with the most complex issues are passed from silo to silo and each silo doesn’t understand the limits of another. One program only takes a certain type of disability, another your child might be too intelligent for, another is only available if you have an IEP, and another is only available if you don’t. Behavioral health care doesn’t cover emotional regulation issues if you are autistic. If you are acting out at school because your struggling without adequate educational supports, the police might be called instead.
• Existing laws to address school refusal or the age of behavioral health consent aren’t being followed and most providers who treat adolescents are unskilled at helping complex children.
• System-developed family “crisis plans” often use “call the police” as the strategy to address the problem at hand, rather than identifying effective behavioral health strategies that will eliminate the need to call the police at all.

“I remember the days when I started to be grateful for not having to talk to the police in a while! Once a police officer sat in the emergency department room, manspreading and blocking my chair while taking his sweet time writing the report. I remember feeling like I was being judged and wondering what was in that report, but not knowing whether I had a right to ask. Humiliating.”

From the comfort of an office it is understandably hard to grasp that having to repeatedly tell the darkest moments of your life to strangers is traumatic. Yet part of the referral process is outlining everything you’ve tried so far. Imagine having to repeat over and over explaining your inability to control your child, or your son set another one of your children on fire, or your child telling you they have plans to murder siblings or community members, or your experience in cutting your suicidal child down from the ceiling and then being denied care. Then after you have shared that trauma several times, only to be handed off to yet ANOTHER phone number, ANOTHER stranger. It’s no wonder parents give up.

There must be a better way!

Part of the problem lies in the definition of crisis. Crisis lines are designed to help adults and mature adolescents but are not helpful when you are a child with a developmental disorder that impacts your judgment or if are a parent of a suicidal child. Parents experience children in crisis not as an event, but as a growing feeling of impending doom.

Our system is very comfortable in telling parents to wait for your child to grow out of it, or that juvenile rehab will be the best thing that ever happened to your child. The experiences of other family members — like the sibling who was set on fire — are not considered relevant to making crisis referrals.

When youth-serving systems don’t collaborate in making referrals, parents wind up in the ironic situation of being asked by probation officers on what type of behavioral health intervention they think would help their child. At Risk Youth petitions (and court-appointed punishments) are used to enforce medication management. Black parents who call the police risk death or incarceration. Children Fetal Alcohol Syndrome are sentenced to life in prison. Suicidal youth are sent to jail and homeless shelters instead of behavioral health care.

“Once we called the police who took my son to the ER where things only got worse. He refused treatment and the hospital told me my only options were foster care, jail or take him home. I. Was. Devastated.”

Finding solutions that work for families

In order for any crisis or referral line to be effective for families, it needs to:

• Understand the nature of family crisis is not a one-off event. Crisis is a continual experience for families.
• Any referral line must be connected to a fully equipped with a timely continuum of care for all residents regardless of type of insurance coverage.
• Provide appropriate referrals that are open to new clients with the issue the family is calling about.

Imagine your child has an aneurysm and you call 911. They take him to the hospital but the hospital won’t admit him because they don’t provide treatment for serious brain injuries when the child doesn’t want any care? Do we offer a child with leukemia to successfully refuses to put in their port? When hospitals don’t have children’s behavioral health services on call, and primary care physicians diagnose but don’t treat, and social service providers view children as having the capacity to make adult decisions, our referral system will continue to fail.

Other creative solutions exist, but because system providers don’t share the urgency felt by families, they haven’t pursued them. Intake trauma, for example, could be aided by creating universal intake forms and procedures with the help of the cloud computing geniuses living in our state. This could help save time and emotional energy for all concerned as well as help families create the records they need when early intervention and prevention programs aren’t enough. Instead of creating new mental health phone numbers for COVID-19, spend funds to build a robust statewide referral network or promote the crisis lines that already exist. By putting the burden of finding appropriate referrals on families in crisis, we mask the crux of the problem — there are simply not enough appropriate providers available.

As one parent put it “Until we fill our massive gaps on our continuum of care. We might as well be handing someone keys to a door that opens up to a brick wall.”