autism

Systems Failures

The following is a letter I sent to the Ministers of Education, Community Services and Health, regarding the plight of parents with high needs children.

Dear Ministers Casey, Bernard and Glavine,

My name is Charlene Gagnon and I am writing you today in my capacity as both a mother of two autistic teenage boys, and as community advocate for parents of special needs children, to alert you to and discuss the crises I, and many parents of exceptionally high needs teenagers and young adults, are facing as we attempt to care and plan for the futures of our children.  Some days are good, some days are heartbreaking… especially the ones that highlight the immense systemic failures to provide appropriate education, health and community services to our families.

 

I would like to begin by defining what I mean by “exceptionally high needs.”  These are the children with severe behavioural, sensory and emotional control issues.  They are not all on the autism spectrum (as demonstrated recently in the media by Lily who has FASD).  They suffer from a variety of disorders and disabilities; some are diagnosed, some are not; and from a variety of socioeconomic and cultural backgrounds.  As I mentioned, I have two teenage boys with autism, however, it is only the youngest of the two who I am placing in this category of “exceptionally high needs.”  My oldest, Gabriel, has enough language, emotional control and ability to eek out a living in this world with the types of minimal supports currently available.  My youngest, Izaak, however, does not.

 

Izaak is in grade 9 this year, but he is attending school at Dartmouth High. He was a student at Prince Arthur Jr. High, and a victim of the hasty decision to close the school with only 3 weeks to prepare him for the transition; a process that in the past, has happened over 4-6 months.  Izaak’s father and I were extremely disappointed in this decision, and anxious about the adjustment.  Although Gabriel has had two completed, successful years at Dartmouth High, we knew of another family with a high needs child who went there a few years ago, which they were not equipped to deal with and resulted in her removal from the school.

 

Needless to say, we were not surprised when, after the first two weeks of school, Izaak had a massive meltdown which resulted in a phone call asking his Dad to come pick him up.  We had a meeting set up within a few days and reviewed emergency protocols for the future.  We were assured by the Vice-Principal and his teachers that Izaak was a Spartan, and that everyone would work together to ensure Izaak was receiving his rightful access to his education.  I am pleased with the staff their, and their dedication to including Izaak in the school community, however, I would feel much better if there were more appropriate options for his education.

 

Izaak experiences meltdowns and violent outbursts which have, in the past, resulted in injury to his father and I, the staff at his school, but mostly to himself.  Just yesterday, in fact, he suffered a head injury at school where he slammed his head into a door with a safety glass window and broke it.  Fortunately, there was no serious damage, however this is the 4th head injury he has been seen by medical professionals for which occurred in the school context in the past 5 years; one resulted in stitches and one a fractured skull.  Head-banging and other forms of self-injury, as any psychologist or medical professional will tell you, is not uncommon with high needs teenagers.  We don’t always know why Izaak bangs his head because he can’t communicate that to us.  We believe that sometimes it is out of frustration, sometimes it is because he is constipated or has a headache, sometimes it is because something in his environment has set him off (lights, sounds, smells etc).  It makes them very hard to predict and prevent.

 

We have been extremely fortunate to have had dedicated professionals in all three of your respective departments working with our family for well over 15 years.  The front line workers (teachers, EPAs, doctors, therapists, social workers and respite care givers) have all done everything they can do within the systems and institutions they have, to help Izaak, and our family; however, the systems are severely lacking, and it is no fault of the front line workers.  If the staff at Dartmouth High decided that Izaak was too difficult and said he could not come back… I wouldn’t blame the school, but I would blame the system.

 

We have an education system which tries to fit high needs students into traditional public schools where the sensory stimulation is overwhelming and the majority of EPAs have no education or training higher than a high school diploma.  Think about that for a second… you have those with no medical or educational background in complex neurological disorders as the primary caregivers for these kids.  They work for close to minimum wage, to deal with kids who are breaking safety glass with their heads in an environment which will certainly trigger such events – the noise, fluorescent lights, hard tile floors, and divided EPA attention – this is a recipe for disaster.

 

We have a community services system which throws money at parents for respite care, yet no registry or access to such workers.  Further, there are no residential respite services or placement locations available for those under the age of 18.  If a day comes when Izaak’s father and I no longer believe we are capable to care for him, our only option is to put him into the foster care system before the age of 18.  Further, there are no Income Assistance options for parents who wish to stay home with their children and be primary caregivers for high needs children who require 24/7 supervision… I am sure you can well appreciate the difficulties in obtaining affordable childcare for a fifteen year old, who has the emotional and social functions of a three year old and the strength, intelligence and speed of a twenty year old.  If Izaak is deemed to be ineligible for public school, it will be extremely difficulty for me to continue to work.

 

We have a health care system that invests in programs and services for children under 5, yet has no therapeutic options available for school-aged children and teenagers.  No crisis care services for parents who are having to deal with major emotional and behavioural challenges as they emerge, and only the police to turn to for assistance that is often related to mental health issues.  We have exhausted the MSI covered options with Izaak.  He is on medication that assists with his anxiety, however, medication works best when it is paired with intensive behavioral therapy.

 

I am fearful for Izaak’s future, and extremely empathetic to parents, who are experiencing similar challenges with their kids.  And, as the ministers of education, health and community services, you should be too because we are about to hit a tipping point.  This is particularly evident with kids on the Autism Spectrum, as incidence rates increase by alarming numbers, and the first waves of those increases become teenagers and young adults.  To put these rates into perspective, 15 years ago when Gabriel was diagnosed, they figured only 1 in 10,000 people had autism.  Today, that estimation is 1 in 66 people.  We currently have services sufficient to deal with those 2000 statistics, but certainly not to deal with the realities of today’s numbers.  Add in those with FASD, bipolar disorder, and ADHD and compare them to today’s levels of services, and I think you will find we are lagging far, far behind.

 

So why should you care about this? Well from a financial perspective (because that is what you guys typically tend to base your decisions on), without the proper interventions and services these children end up costing the government far more money than the investments required to provide those services before these children become expensive burdens on society as adults.  For example, the costs of ER visits, police services, search and rescue, in-home support finances, health care, school adaptations for Izaak alone have been enormous.  If given the appropriate therapy, education and in-home/residential support, his potential and capacity to become a contributing member of society is increased and likelihood for lifelong care reduced significantly.  Izaak’s father and I will not be around forever to care for him.  And what happens then?

 

I know this is a complex issue that would require money not currently budgeted to address; however, to do nothing will only increase the financial burden for generations to come, and potentially lead to tragic ends.  There are so many stories these days of parents, desperate, at the end of their ropes, who are ready to just let go and fall into the abyss of despair that can open up with prolonged and intense exposure to impossible circumstances. If you were to ask me what my fantasy outcome would be, it would go something like this… a provincial special school with intensive education, therapy and recreation to improve the outcomes for these kids.  Inclusive education in the public school system can be wonderful for some special needs kids, like my Gabriel, however is inappropriate for others, like my Izaak. For the kids in between, we have Bridgeway and Churchill Academy, however neither of these private institutions take kids with “externalizing behaviours” like Izaak’s.

 

However, I like to think of myself as a realist, so my request today is smaller than that.  I am requesting a meeting with the three of you.  To sit down with myself, my ex-husband, a few other parents in the same position that we are in, to discuss the complexities and needs of our children, with the hopes that a special inter-governmental task force can be established to conduct needs assessments, cost-benefits analyses and policy recommendations towards the goal of turning these failures into successes and building a new system of care for children, youth and young adults with exceptionally high needs.  As an experienced researcher and analyst, I am even willing to donate my services towards this goal.  In fact, I have already been working on an online survey for Nova Scotia parents with special needs kids which I will be launching in the coming weeks to try to begin exploring the extent of the situation.

 

Izaak’s father and I are dedicated, fierce advocates who have struggled through countless crises, tears, depression, poverty and anger in his 15 short years alive.  We have always persevered much to the astonishment of our friends and family, however, Izaak now has more strength now and he could overpower us either of us, if he so chose.  I am fearful that the day we are no longer able to care for him will come sooner than we are prepared for, and reaching out for a helping hand before that day comes.

 

Will you be our helping hand?

 

Thank you for taking the time to read this letter.  I have also posted it on my blog to help raise awareness and let parents who are suffering and losing hope out there that they are not alone.  I look forward to hearing from you all, and working together on this extremely difficult problem.

 

Sincerely,
Charlene Gagnon
*If you are the parent or live-in caregiver of a child with special needs, please fill out and share this survey https://docs.google.com/forms/d/1fkbYnhsTybZpwsATU8FxI8o03Qh6bIhDD48EIn1GEWQ/viewform?usp=send_form 
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