The Mental Health Transition Nightmare

So my last post was about how difficult it is to navigate the maze of child and youth mental health resources in Ontario and how the three systems that deal with child and youth mental health, The Hospitals, The Mental Health Agencies, and The Schools System, do not work together very well together to assist those parents who have a child with a mental illness. Now I’m going to explain why they don’t work well together and what it’s like moving between these systems.

Again you need to understand that these three systems all are funded and created by three separate ministries. The Ministry of Health (hospitals), The Ministry of Chid and Youth Services (Community mental health agencies), and the Ministry of Education (Schools).  All of these have different methods and resources for working with children and youth. The result of this is that these very different systems do not enable transitions and mutual support for the families, children, and youth that they need at their most vulnerable times.

What you also need to understand is that there is sometimes turf wars and sometimes a lack of or inability to cooperate due to the rules or personalities involved. So let’s put that into a context that may make more sense to you.

Imagine you suffer a heart attack. The ambulance arrives and the EMTs rather than immediately beginning to administer medical treatment first begin questioning your wife or husband about their lifestyle and whether you al should be exercising more and tells your partner that you will all have to go to nutrition classes and agree to this before beginning medical treatment. Finally they begin doing basic medical care and load you into the ambulance but inform you it may be several months before you can get into the hospital to see a doctor. Luckily you arrive and somehow manage to be seen by the triage nurse but the nurse informs the EMT’s that they cannot accept patients from EMT’s and that maybe they should have referred you through another channel. It has now been 3 weeks since your heart attack and yo9u still haven’t seen a doctor. Finally the triage nurse sees you and asks you to fill in 30 pages of questions. You, in great pain, manage to do this and hand it to the nurse. You then wait in the waiting room for the next  5 months while you’re in cardiac distress. So 5 months later you see the doctor and she asks you to fill out 30 pages of questions and asks you’re wife, children, and employer to do the same thing. He then begins to do treatment on you but sadly your conditioned has worsened and now you need emergency surgery. Sadly the ER doctor cannot help you and refers you to the surgery centre for which there is an 8 month waiting list. You make it the 8 months and are barely arrive only to be asked by the surgeon to fill out 80 pages of questions before surgery. You do this and wait another  4 weeks. On the day you arrive for surgery you’re told that unfortunately there is no room on the surgical schedule and you’re sent home. Then you die.

The above sounds fantastical but it is the everyday reality for 100s of thousands of children in the province, because the systems do not communicate. You will be asked the same questions hundreds of times and asked to tell your story dozens of times and referred and turned away multiple times. All because these systems are not mandated to work together like and hospital is.

Your child may get into hospital but will have little help once the treatment is complete. There is no seamless hand off between the hospital and the community agency. You have to find your own way there and start again. No one calls for you and there is little in the way of information sharing unless you, the patient or the parent, make that happen. This would never happen if you had diabetes or a heart condition but does if you have a mental illness. Also the school will have you tell your story again and fill out the forms and will ask you to come and deal with the child anytime there is a problem and all three of these systems it is you, the patient or the caregiver of the patient, that has to make everything happen. Also you may have two of the tree organizations that have conflicting areas of responsibility or staff that are burned out or unsympathetic to you because you’re angry after moths or years of trying and you get upset. You are expected to be a professional and be the case manager for everything.

The transitions between these systems for these children and youth are, more often than not, not easy and often create another health crisis. Oh by the way there is another system that you may come into contact with during all this. The police and criminal justice system.

Now there are some efforts to bridge the silos between these 3 systems. For example in London and across the province we have the Student Support Leadership Initiative. This is an attempt for the schools and the community agencies to work more closely together and some good things will come of this. But at some of the meetings I have attended we have conflicts and turf protection between the teachers unions and the staff at the mental health agencies and their unions. Also these meetings where you can be involved are often during the day which excludes parents who work. So you have very little parent input into this process. Also there is an advisory board that is made up of medical and community agencies and these people are trying to bridge the gap as well. But there is no grand unifying ministry or authority that says to these three systems thou shalt work together. Mostly it is through the efforts of dedicated staff in each system that cooperation happens.

There is one last transition I need to talk about and that is between the child and youth mental health system and the adult mental health system.

The adult mental health system is funded through the Ministry of Health unlike the child and youth system which is funded through the Ministry of Child and Youth Services, The Education Ministry, and The Ministry of Health. Now adult mental health is mostly funded and controlled through the Ministry of Health and the local systems are controlled through the Local Health Integration Networks or LIHNs . This makes the multiple ministries and funding and control problem moot. But what is not moot is that the transition between the chid and youth system and the adult system is often very frustrating and often can create more crisis. This is because many of these agencies on both sides have different definitions of what is a youth and when they can be taken into their systems. In some cases it is 18 and in some it is as late as 24. So during this time families and their almost but no quite adult children are in limbo. Again there will be no formal transition between the child and youth system and the adult system and there are again issues over who is responsible for what and turf protection. A young person may find that they are turned away from multiple adult treatment facilities and community support agencies until they fit the criteria of being an adult.  We have arrived right back where we started when this young adult was 6 or 8 in my previous post.

In my next Blog post I will suggest a way forward and a system and community of care.

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