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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5 MOMS AND THEIR KIDS LEFT BEHIND

So what you may not know is that when it comes to any mental health issue affecting a child or a youth that the system is divided into three non-cooperative spheres. There are The Hospitals, The Schools, and The Mental Health Agencies in the community.  Now each of these is funded by three separate systems as well.  The Ministry of Health, The Ministry of Education, and Ministry of Child and Youth Services. Why is any of this important? Because for the last week I have been trying to get help to 5 different families all with children with extreme symptoms all of whom cannot get the help they need and these systems are not working together to solve these extreme issues.

So let’s imagine you are a mom with a child, say between 6 and 8, who is continually so out of control that he or she has completely trashed their room and you have a number of bruises and knocks and in some cases broken bones. Let’s also imagine that the child’s room has had to have all toys, furniture, closet doors, and lamps removed because when this child flies into a rage they hurl these things around. Also the child’s room has had the walls boarded up because the child has punched holes into. Let’s further imagine that the windows have been boarded up because the child has tried to hurl themselves through the window. Also this child has lashed out at siblings, parents, teachers, workers, hospital staff and relatives. Now as a parent you have had this child hospitalized, you have called the various crisis intake lines, you have gone through the various agencies and have applied for respite and counselling and …well you get the idea. Now given these above circumstances you would think that these three systems would do everything they could to support these moms and dads and get this child stabilized and the family some relief. Think again friends think again.

What happens instead is that first you’re parenting skills are called into question and you’re immediately but into a position of justifying that you are not the cause. This will often happen previous to any treatment. But it gets better folks. So again we’ll imagine that things are so bad that your child, or the police in many cases, is taken to the Emergency Room. You arrive hoping that you’ll get relief and support but sadly that is not often the case. The ER staff, who are heavily overworked, are usually under trained when it comes to child and youth psychiatric issues. So you tell your story and you wait to be seen by a resident in psychiatry and then you’re assessed and if you’re lucky you’ll get an admit. BUT if your child is exhibiting externalizing behaviour, like hitting or biting or is violent, you won’t get that admit even if your child is tied to the bed during the consult. Why? Because if your child is exhibiting these symptoms the hospital is not equipped to deal with it. So you’re back out on the street again and asked to go to a local community agency. Literally given a list of numbers to call and asked to do it yourself.

So now you’re off to the local child and youth mental health agency. You arrive hoping for immediate relief to find you must fill in forms, tel your story again, and then you wait and wait and wait. Often this wait can be from 4 months to 2 years and during all this your child is still in crisis and therefore so is the family.

Meanwhile your child is at school. At the school there are usually 2 paths. Path one is where you will be called at work, as in my case daily for months, to pick up the child. Path two is that you will go through a process to get your child the educational supports they need including educational assistants, specialized program modification, and additional psycho-educational supports. This will take months and months and will often result in a reduction of time for your child in school. In the case of my daughter she went for half a day for a year.

So now your child is attending half a day of school during which you’re still going through assessment and intake with the mental health agency and may have had as many as 6 hospital visits within a 4 month period because your beautiful child is in a medical crisis. Oh by the way your still trying to keep your job and marriage going during this or if your single and living at or below the poverty line your barely making it through a day and will likely suffer your own health crisis.

So you have finally survived the waiting list and the agency calls. This may go one of two ways as well. The first is that you will be assigned a case manager, that’s someone who coordinates your care, and assigned to programs. Part of this program is that you will take a parenting class while your child goes through a some sort of behaviour modification program. These programs can be highly effective but that is dependent on the illness you’re child has. I’ll get back to diagnosis in a minute.

The second way this can go is that after months of waiting you may be told there is nothing this agency can do for you and you’re sent to another agency. Fortunately in London we have CSCN as a central facilitator of connecting you with one of these agencies but often the wait can be as along there as it is at the agency itself and you may still be told, as my family was, that there is nothing they can do for you. So as I said before your back at square one. So you go to another agency and start again. Meanwhile your child is having even more problems at school and is attending less and you’ve had to visit the hospital several more time.

Now for the Diagnosis. So during this whole adventure you have no formal diagnosis. A diagnosis for your child can take several years and can often change over time. There is a serious shortage of qualified child psychiatrists in Ontario, more than 50% of them in Canada reside in Quebec, and the wait times to be assessed can be horrific.

So you get a diagnosis, you start medications, you finally have an agency working with you , and the school situation is now on track. Sigh of relief. But what if even despite all of this help your child is still having violent outbursts and your home and work life is in a shambles. Well you can try to get your child into a psychiatric facility that specializes in children. Again we are blessed in London with The Child and Parent Resource Institute or CPRI. CPRI has both in and out-patient care and has an outstanding collection of staff with a number of specialities. So you go to CPRI, which by the way serves all of South Western Ontario – a huge population, and try to get admitted.

Well you’re back on a waiting list for the outpatient programs. If you’re lucky enough to get a YURI bed, that’s a short-term emergency assessment inpatient program, you can get a meds review and diagnosis review. But YURI beds are few and far between.  And you’re waiting again. Remember that unlike any other emergency medical issue mental health issues are often about waiting for service and telling you’re story again and again while trying to muddle through.

 

So were now at 1280 word to describe the situation of 5 mothers I have been trying to help in the last 7 day.s They are still not receiving the help they need. These three systems are not talking to each other, there are no emergency beds available, there is no support in the community to help, and they are all on waiting lists or have been told that they can’t get the service they need. Also within the school system they have been expelled, suspended, charged by the police, or been told to go home.

Now I could yell at the people who work in these systems, people like principles, and doctors, and social workers, and teachers, and…well you get the idea. But they are not the problem. I know many dedicated and brilliant people within these systems that have literally changed the lives of many families. No the problem is larger than that. The problem is the whole system and the way it is funded and designed. A successive series of governments have left the child and youth mental health system understaffed, radically underfunded, and siloed in to three separate areas of which only one can be investigated by the provincial ombudsman. Someone once said that if adult mental health was the orphan of the medical system then child and youth mental health is the orphan of the orphan. We are fortunate In Ontario that the Liberal government recently increased funding to child and youth mental health but the real world effect of this, while good, is still way behind the rest of the western world. In fact this government is the first to give any increase in funding at all for the last 13 years. A positive step forward. But in the end this last week there have been 5 moms all with children with serious medical conditions who continue to be in crisis and are not getting the help they need. Oh and by the way…there are as many as 650,000 children with a mental health issue in Ontario alone of which only 1 in 5 are receiving any treatment.

My next post will deal with the transitions. The transitions between Hospitals and Agencies and the transition from youth to adult mental health systems.

An Apology to Nancy Branscombe and Cheryl Miller – Live the change

I want my representatives to be thoughtful and engaged and to treat the people who they work with, whether on their own political side of the fence or not, with respect and in a spirit of working for the common good. This is the dream I have for our political system.

If this is the system I imagine then this is the way I should behave when I engage in a political or any other kind of discourse. In other word live the change you want to see. I have not done this in the last week or so. In fact I would say that I have been the exact opposite. After watching the provincial candidate’s debates last Thursday on our local Rogers cable I started firing off a twitter stream dismissing the two PC candidates Nancy and Cheryl. The problem is this is that by doing this I am not living the change I want to see and in fact am acting like those politicians and pundits that I most want to see this way of behaving in.

I can imagine a system where the candidates and parties respect their electorate and treat their fellow human beings on the other side of the bench with dignity and respect. I believe whole heartedly in vigorous debate and testing the merit of ideas but I do not agree with name calling and cheap political stunts. By firing of quick cheap shots over twitter I began acting like that which I most dislike.

We are now in the midst of one of the most important processes we have in our country, the process of choosing who will lead us and who will make decisions on our behalf for our collective benefit and sadly many times I do not see that change I most want to see. So I must join the efforts of some other who behave this way and help to bring about the civil society I long for.

So To Nancy Branscombe and to Cheryl Miller I offer my most sincere apologies for the way in which I have callously thrown around remarks on twitter. I disagree with many of your party’s policies but that does not mean I should act like a braying ass and I hope that you will call me on it if I start too.

To the rest of you I ask you to join with me and many others to create the place in which we most want to live. I’m asking you to join the civil society.

Sean Quigley

@sqedmonton on twitter