5 moms and their kids left behind

Mother and baby

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.

Submitted by Sean Quigley

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2 comments

  1. Have you directed these families to PCMH? PCMH is a province-wide, parent initiated organization that aids families whose children have mental health issues. There are local chapters in London and St. Thomas and various region throughout Ontario. These people have been a God-send to me an mine, helping us navigate the maze-like mental health system. They also provide parent support groups and are diligently advocating for children’s mental health in the political arena. Visit the website for more valuable information http://www.pcmh.ca

    I hope these families are able to get the help they need soon.

  2. Hi Holly,

    I believe the person who wrote this is either connected with or aware of the PCMH. It is actually through someone who deals with the PCMH that we get these submissions. We post them because everyone needs a little help now and again and PCMH does really help.

    thank you so much for commenting and caring enough to suggest the PCMH.

    Nathan