Saturday, April 22, 2017

Julie Ali · University of Alberta It is troubling that despite the work of so many parents to raise issues about the lack of supports and services for all children with disabilities the system just does not "get" it. Parents are doing the work that the system is not doing and are under tremendous stress. In Alberta there is a lack of respite care that indicates to me at least that the system is designed to offload the work to families. While families are willing to do some of the work they cannot do everything. There needs to be integrated care teams to support families who have to bear the stress and costs of the raising of their children in an unresponsive system. Just obtaining a diagnosis for my younger son in Edmonton Public Schools in Alberta was problematic and lead to further difficuties. Why isn't there--for example--- early detection of neurodevelopmental disorders? Why do children not get the appropriate testing for conditions like Auditory processing disorder? I have still to receive any response from the minister of education on how the system is currently detecting auditory processing disorder when Alberta Health Services is not doing the auditory testing it was doing in the past on these kids. Do they just wait until all other diagnoses are eliminated now? The failures of the education and health care system due to the lack of experienced, trained staff, the failures of the mental health system to provide support to these children and the result of trips to emergency indicate that the problems with reference to diagnosis, treatment and ongoing problems in the provision of appropriate special education and mental health services will result in a subclass of our children who do not experience inclusion. What will they experience? Without the right supports at the right time they are at risk of mental health issues; anxiety among kids is increasing and no sort of responsive action is present as far as I can detect in Alberta. Government is not the answer to these problems and failures. Families will have to join together in umbrella organizations and change the system ourselves. I no longer believe that government has any interest in the needs of the most vulnerable children, youth and adults; for these citzens government is simply present as failed entities that cover up and spin system wide failures. Families will have to do the work that isn't being done by government and it is best done by preparing for the monetary and care needs of our children ourselves. The only things we can expect from government-at least in Alberta is spin and failed action plans. #GOASPIN. Like · Reply · Just now · Edited


Government isn't the solution to the problems faced by families of kids with disabilities.
We're the solution.
We've got to ensure our kids are well supported and have the financial resources to be taken care of when we are gone.
I have zero confidence in government anywhere in Canada to ensure appropriate services, supports and care plans are present for our kids.
Why would I have any belief in government after the chaos of my handicapped sister's care in the system?

With the recent federal commitment to increase mental-health funding across Canada, we need to turn our attention toward a group of individuals who are currently invisible…
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http://theprovince.com/opinion/op-ed/yona-lunsky-and-rob-balogh-people-with-developmental-disabilities-are-invisible-in-the-mental-health-system

Yona Lunsky and Rob Balogh: People with developmental disabilities are invisible in the mental-health system

Published:April 22, 2017
Updated:April 22, 2017 3:36 PM PDT
Filed Under:
Sandra Wallace and her daughter Camryn, 10, are shown in their home in Carp, Ont. on Wednesday, Jan. 27, 2016. Electronic medical records have helped manage hospital appointments for Camryn, who was born with Down's Syndrome.
Sandra Wallace and her daughter Camryn, 10, are shown in their home in Carp, Ont. on Wednesday, Jan. 27, 2016. Electronic medical records have helped manage hospital appointments for Camryn, who was born with Down's Syndrome. Justin Tang / THE CANADIAN PRESS
With the recent federal commitment to increase mental-health funding across Canada, we need to turn our attention toward a group of individuals who are currently invisible within Canada’s mental-health system – a group that has some of the greatest needs for services and supports, yet is rarely acknowledged or targeted.
Those with developmental disabilities, which includes Down syndrome, fetal alcohol syndrome and autism, are rarely recognized in mental-health statistics, policy priorities, education and training or even clinical practice.
There was a time when this population was not “seen” within mainstream mental-health initiatives because they received their care in a separate system, primarily through institutional care.
But with the closure of institutions and an emphasis on community inclusion in Canada over the last several decades, those with developmental disabilities are expected to access physical and mental-health care, like everyone else, in their home communities.
Unfortunately, their health needs are often not adequately addressed. And our inability to “see” this population is costing the health system enormously.
In August 2016, the Ontario ombudsman released Nowhere To Turn, a disturbing report following a four-year investigation about the care and treatment of adults with developmental disabilities. The report found frequent emergency department use, lengthy hospitalizations as well as homelessness, incarceration, family burnout and cases of abuse and neglect.
Although mental health was not the focus of the investigation, it was clear that poorly addressed mental-health issues led to many of the problems highlighted in the report.
Similarly, recent research from the Centre for Addiction and Mental Health and Institute for Clinical Evaluative Sciences in Toronto shows that 45 per cent of Ontario adults with developmental disabilities are diagnosed with a psychiatric disorder and at least six per cent have an addiction.
Perhaps because of the complexity of their health needs (both physical and mental health problems are prevalent), this group is more likely to have repeat emergency department visits and to be re-hospitalized than other individuals — a sign that the connection between community and hospital-based care for those with developmental disabilities is not what it should be.
A national study of hospitalizations published in the Canadian Journal of Psychiatry found that psychiatric hospitalizations accounted for almost half of developmental disability hospital admissions. The majority of those with developmental disabilities hospitalized for psychiatric issues were youth and young adults. This was in stark contrast to psychiatric hospitalizations of those without disabilities, which tended to occur later in life.
Sadly, this complex and vulnerable population is also often treated by health-care providers who are unfamiliar with their disabilities and frequently do not feel comfortable working with them. Indeed, the training of providers on the mental-health needs of this group is very limited in Canada.
So, what needs to be done to help policymakers finally “see” this invisible population and to support the mental-health system that addresses their needs?
As a start, since we know that adults with developmental disabilities are prone to mental illness and addictions, our mental-health promotion efforts need to include them.
We should be investing in screening for mental-health issues and early intervention in this population and we should play an active role in helping those with developmental disabilities obtain an accurate diagnosis and receive accessible, evidence-informed treatments and supports.
This would also mean that all mental-health care providers require some basic skills and knowledge to support those with developmental disabilities.
Repeated emergency visits and lengthy hospitalizations could be reduced or avoided if we delivered more extensive outpatient-based mental-health care to those in need. Across the country, mental-health and social-service sectors must work together — especially once someone in this population is hospitalized — to plan for safe discharges with the appropriate mental-health supports in place.
Finally, the phrase “nothing about us without us,” should be kept in mind. A quality, patient-oriented solution means those with developmental disabilities and their families need to be at the table alongside other groups with mental health or addiction expertise.
It makes good policy and good economic sense to ensure individuals with developmental disabilities are included in mental-health plans, strategies and funding going forward.
It’s time their needs were seen — and met.
Yona Lunsky is an expert adviser with EvidenceNetwork.ca and a psychiatry professor at the University of Toronto. Robert Balogh is an assistant professor in the Faculty of Health Sciences at the University of Ontario Institute of Technology.


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Julie Ali · 
It is troubling that despite the work of so many parents to raise issues about the lack of supports and services for all children with disabilities the system just does not "get" it. Parents are doing the work that the system is not doing and are under tremendous stress. In Alberta there is a lack of respite care that indicates to me at least that the system is designed to offload the work to families.

While families are willing to do some of the work they cannot do everything. There needs to be integrated care teams to support families who have to bear the stress and costs of the raising of their children in an unresponsive system. Just obtaining a diagnosis for my younger son in Edmonton Public Schools in Alberta was problematic and lead to further difficuties. Why isn't there--for example--- early detection of neurodevelopmental disorders? Why do children not get the appropriate testing for conditions like Auditory processing disorder? I have still to receive any response from the minister of education on how the system is currently detecting auditory processing disorder when Alberta Health Services is not doing the auditory testing it was doing in the past on these kids. Do they just wait until all other diagnoses are eliminated now?

The failures of the education and health care system due to the lack of experienced, trained staff, the failures of the mental health system to provide support to these children and the result of trips to emergency indicate that the problems with reference to diagnosis, treatment and ongoing problems in the provision of appropriate special education and mental health services will result in a subclass of our children who do not experience inclusion.

What will they experience? Without the right supports at the right time they are at risk of mental health issues; anxiety among kids is increasing and no sort of responsive action is present as far as I can detect in Alberta.

Government is not the answer to these problems and failures. Families will have to join together in umbrella organizations and change the system ourselves. I no longer believe that government has any interest in the needs of the most vulnerable children, youth and adults; for these citzens government is simply present as failed entities that cover up and spin system wide failures. Families will have to do the work that isn't being done by government and it is best done by preparing for the monetary and care needs of our children ourselves. The only things we can expect from government-at least in Alberta is spin and failed action plans. #GOASPIN.
LikeReplyJust nowEdited



By the time government gets its act together (if it ever does) our kids will be seniors. Instead of expecting government to do the work we pay them to do--decide yourself to do this work. Become a strong advocate for your child. Get extra tutoring help. Make sure you provide the opportunities and supports that you can't get from the government. Start preparing your child for the work outside the front door of your safe home. Prejudice is everywhere and anxiety will sometimes end up living with your kid. Best to have mental health supports ready. Overprepare. And then systematically remove all the barriers for your kid. Do it yourself.
Government is incompetent.
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