One of the new services for families in Massachusetts is the mobile crisis initiative or MCI. Mobile crisis — sounds like something that will come to you when you have a crisis and stay there till the worst has passed, doesn’t it? Except it doesn’t always work like that.
This service has incredible potential. And in some parts of the state, it helps families whose children have a behavioral health crisis enormously. The intake worker “gets it” and sends out the team, the team goes where the child or youth is and figures out what to do, and the family has follow-up for 72 hours if that’s what they need. The team includes a family partner whose role is to ensure that a family’s perspective and choices are heard loudly and clearly and included in the solution. Until these new services began, the only “mobility” anyone ever saw was the crisis team going from their office to the hospital emergency department and then traveling back to their office.
The tricky thing about mental health care is that how well it works relies heavily on relationships, even very short term ones. Clinical skills count as does experience and expertise. But the expectation that each person has a job to do and is doing it as best they can is what builds the bond that can make things work.
Most crises, as any parent can tell you, happen at home and after business hours. Sure, there are times when a child or youth becomes suicidal or out of control at school or somewhere else. But a huge percentage of mental health crises occur at home. The parent sees what sets things off, usually knows what isn’t going to work ahead of time and can judge what’s outside of their own ability to handle things. So, they call in reinforcements.
Sometimes problems start with the phone call. The intake worker decides that the parent should be able to “manage” things at home. Or advises the parent that the MCI team can’t come out and they should try the emergency department instead. Sometimes new problems come with the team themselves. In one instance, the mobile crisis worker remarked, “This child is running the house. What are you going to do about that, Mom?” In these cases, the service may have changed but the attitude hasn’t.
Massachusetts Behavioral Health Partnership, who oversees the new mobile crisis services, has been working hard to improve them by offering training, consulting and other assistance. For some provider agencies with MCI teams, this is just what they need. Others, however, don’t seem to have the committment to adopt this new model and, instead, continue to do business as usual.
One father wrote in an email recently of his experience with the MCI team in his area. He called and outlined the escalation in his son’s delusions and behaviors and asked for the team to come out. Instead he was told to go the emergency department. After several hours, poor service and little help, a supervisor apologized for making his son and he go through it all. “I told them that the ER visit wasn’t needed, and now all we got was an apology for having to go through it, he wrote. “Parents need to be listened to from the beginning, not apologized to at the end. “
So what makes an expert, well, an expert? It’s certainly a step up from just knowing a lot or being acquainted with the facts. According to the dictionary, an expert has skills or knowledge that’s gained from training or experience. Usually, those skills are in one area or that knowledge is focused on one particular subject.
Let me say it straight out: parents are experts about their children and about their families. And that expertise should be recognized and respected. Far too often, it is not.
We all seek out experts when we encounter a problem that takes special skills to solve. If your car makes a strange noise or the check engine light lights up, you might go see a mechanic. If you encounter a legal problem, you might seek out an attorney. If that mechanic or lawyer finds out you own a bicycle shop, he could very well ask your opinion about selecting a new touring bicycle.
From the very first moment, a parent learns everything she can about her child. She observes her child closely and is often fascinated by what makes him laugh, what jump starts his curiosity and what works for him each step of the way. She notices how he carves a place for himself and how his ups and downs affect the entire family. She slowly builds a body of knowledge. In short, she becomes an expert about her child.
When parents encounter a problem that worries them, they seek out knowledge and advice. They might turn to a doctor, a teacher, a therapist or a relative. They bring their observations but also a hard won understanding of their child. However, their often expertise isn’t acknowledged.
A number of years ago, a colleague of mine told me how she took her son to a first therapy appointment. The therapist explained his ground rules around confidentiality and how often (or not) he consulted with parents. He ended by saying that if her son divulged he’d experienced abuse or neglect during the therapy appointment, he would have to file a report. My colleague, without missing a beat, replied, “Likewise, doctor, if on the way home my son divulges that any abuse occurred during his appointment I, too, would have to report it.”
The therapist was startled and somewhat taken aback. In setting up the “ground rules,” he was not thinking of my colleague as an expert partner he should treat with respect; instead he was telling her the way things would be. While she agreed he should act if her child’s safety was threatened, she also knew that her son would benefit more if her understanding of him was included.
In our state and in the country, we are shifting away from traditional services to home and community based services. In order for those services to be successful, they must be family driven and youth guided. When family driven care is at its best, families are considered expert partners when planning treatment and making decisions. It requires a shift in attitude and for some, a leap of faith.
To be successful, we have to ask: So, who is the expert? What do you think?
Most of the conversations I have with other parents include a description of the services that didn’t work. Families often wait for a treatment only to find that it just doesn’t match their child’s needs. It might be the wrong kind of therapy or the wrong school plan. It might be bad advice (it’s just a phase) or or a poor evaluation. But whatever it is, it is a waste of time and money.
Most parents start by giving it a try. You go to the appointment (especially if you’ve waited for weeks) with first hope, then determination. You might wonder why someone thought this was a good match for your child or your family. You begin to think that even online dating services offer a better profile of what you are getting into. But you stick with it, usually long after you know that it isn’t what your child needs.
In 2006, Judge Michael Ponser issued a decision in federal court in the Rosie D case. He had heard weeks of testimony about what was not working for children and families. A pivotal part of that decision was about assessing children so that they would get services that matched their needs. He said, “Without a clinically appropriate, detailed assessment of a child, proper treatment is obviously impossible.”
Out of this decision came a plan and that plan included using an assessment tool called the Child Adolescent Needs and Strengths or CANS for short. The CANS is intended to be filled out with the child’s parents and help inform a process to choose the best course of action for a child and his or her family. It is crucial to involve families in the assessment process. After all, they are the experts on their children and their families. Parents know what works and what has been a dismal failure.
At this point, thousands of clinicians in Massachusetts have been trained to give the CANS assessment. We know that numerous children and youth have received this assessment (sometimes over and over again) and some clinicians have embraced it while others find it cumbersome. But what we don’t know is whether it is leading to more services that match the child’s and family’s needs.
And that’s the bottom line. Parents make sacrifices for their children every day. They invest their time, money, energy and emotions so that their children will get the care they need. But they want that care to be effective. One father I know says that he just can’t believe how ineffective the mental health system is for childen. He notes that in the business world, some of the programs would go out of business because of poor performance or lack of customer satisfaction.
What we don’t know yet is whether the CANS is leading to more effective services for children with mental health needs and their families. That’s the real goal. As we hear of the number of clinicians trained, assessments given and other milestones, let’s not lose sight of it. In the end it’s the only number that matters.