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.”