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Posts Tagged ‘Child and Youth Advocate’

Dots can be hard to connect, especially when it comes to addressing the continuing challenge of teen mental health. The state of services in New Brunswick is replicated right across Canada, especially outside our major cities. Ten years ago, some 1,200 parents and ordinary citizens launched a New Brunswick movement to create a Centre for Excellence for children and youth with complex needs. In the wake of the tragic March 2021 death of 13-year-old Lexi Daken of Fredericton, it’s fair to ask why, since then, so little has changed for teens in crisis.

The images of that day stay with you. Mobilized by Fredericton parent Maureen Bilerman, hundreds of Dots for Youth advocates descended upon downtown Fredericton to form a human chain, connecting the dots, fingertip-to-fingertip, from the Victoria Health Centre to the Provincial Legislature. That demonstration was sparked by an equally disturbing personal story, but it drew powerful inspiration from a truly ground-breaking report, Connecting the Dots, produced in February 2008 by then Child and Youth Advocate Bernard Richard.

What happened over the past decade is a cautionary tale packing some profound lessons. Shocking and disturbing incidents stir outrage, visionary plans for systemic change appear, the momentum dies down, competing regional interests’ surface, and it all comes unraveled en route to effective implementation.

“Sadly, not much has really changed, “says Bernard Richard, looking back over the past ten to twelve years.  “We are still a long way from achieving the goals and implementing the recommendations set out in Connecting the Dots. Despite repeated commitments, revolving door governments, not much has transpired in filling the holes in our community-based network of support for teens in crisis.”

Richard’s report proposed systemic reform, far ahead of its time.  Breaking with the conventional social service model, he singlehandedly put “integrated service delivery” on the child and youth services agenda. Back then, it was considered revolutionary to recommend reengineering the system to focus on student needs rather than the priorities of competing government departments.

Seeing that children and youth at-risk were falling through the cracks, Richard proposed integrating services and focusing psych-social- medical resources. “The one child, one file” concept made perfect sense, but takes years to put in place in a siloed system. “Everyone should have access to the same case file, and no one should have to tell their story over and over again,” he insists. “No one would be missed if there was true integrated support and one case manager per file.” 

Successive governments, Liberal and Conservative, have bungled the most important file – the proposed Centre for Excellence, one critically-important project which had the potential to turn the situation around in child and teen mental health services. From 2011 to 2015, a province-wide network for service excellence gained momentum and a consensus formed around locating the hub in Moncton or Fredericton, closest the hospitals with youth psychiatric services.

The May 2015 provincial decision, since rescinded, to build a Centre for Youth Services in Campbellton, essentially ignored the demographics of teen mental health case-loads and ran counter to the vast majority of the community feedback. 

Long-time advocates like Dots.NB founder Maureen Bilerman were distraught over the decision and its ramifications. “It’s a sad day for families and youth in crisis,” she said in a series of media interviews. “Shock, disbelief and disappointment” were the words she used to describe her reaction. “Most of the youth-at-risk are from the urban centres of Saint John, Moncton, or Fredericton, and it makes no sense, so it must be a political decision.” 

Political advocacy for teen mental health reform may not have reshaped the system, but it has continued to raise awareness and generate plenty of activity. When Bilerman chose to step back, after a decade of pressing for change, her Dots NB organization merged with the longer-established Partners for Youth Alliance, also based in the provincial capital.

Youth in Action mental health activities peaked in the 2018-19 school year, just prior to the pandemic. Some 74,400 students were exposed to mental health activities, held province-wide for two days, dubbed “Ring a Bell” and “Bell Let’s Talk.” Specific programs were delivered in 7 high schools, and some 200 students participated in one-time mental health presentations.

Most students surveyed gave the high school mental health sessions an “Apple” rating, indicating that they found them to be positive experiences. Raising awareness is beneficial, but reaching the students most in need of help remained as elusive as ever. 

The Pandemic dealt a significant blow to such school initiatives. School closures in March of 2020 interrupted communications and the Partners for Youth group reportedly experienced “radio silence” from youth and educators in the partnered schools. Students and teachers were, according to the agency, “overwhelmed” and “treading to keep their heads above water.”

School shutdowns adversely affected those who needed guidance, counselling, and supports the most. The Partners for Youth 2019-20 annual report put it rather bluntly: “Many students who had difficulties with Mental Wellness ahead of school closures had fallen off the school’s radar completely.”  That has the makings of a youth social service crisis. 

The Fredericton agency’s Executive Director John Sharpe has seen it all, over thirty years working with youth-at-risk. Many investigations and reviews have echoed the findings of a 2009 report by Justice Michael McKee, all painting a similar picture of a system that’s “overwhelmed, understaffed and inadequate for the care of youth.”

“We don’t want to rebuild the system,” Sharpe recently commented. “We want a new system… we want a transformed system. What that means is we have youth, family and community at the centre.” Waiting for champions has turned this reform drive into an exhausting decathlon. 

The road to youth mental health reform is paved with good intentions, but initiatives either run out of high-test gas, are diverted into cul-de-sacs, or get co-opted by research groups chasing government grants. Far too many reform initiatives end up being ‘studied to death’ or kicked down the road through the commissioning of yet another government report.

What’s really standing in the way of the needed changes? “The outrage is now at an all-time high,” according to Dots for Youth founder Bilerman. “What we lack,” she believes, “is the capacity for transformational change management. Models exist and we could pull it off here in New Brunswick.”  Let’s hope the ‘Powers That Be’ are listening.

What’s the situation in your province, district or local community?  To what extent are the service gaps visible in New Brunswick present in your community? What does it take to “connect the dots” and establish a full continuum of support services from childhood to adolescence and on into adulthood?

 

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The rise of autism poses one of the biggest current challenges facing North American families and school systems everywhere. The latest education jurisdiction to step into the breach was the Canadian province of Ontario. In response to the mounting pressures for expanding services, the Ontario government announced a new $333 million, five-year autism program initiative packaged as good news.

AutismAndraFelsmanSonRiellySudburyInstead of being welcomed by parents of autistic kids, the move sparked a firestorm of provincial and local community protests. Hundreds of parents descended upon the Ontario Legislature to protest on April 12 and, three days later, local groups carrying signs reading “Autism Does Not End at Age Five” rallied in more than half a dozen smaller centres, including Ottawa, Kitchener, Aurora, Sudbury, Mississauga,and Waterdown, near Hamilton.

Young children with autism spectrum disorder in Ontario were promised shorter wait times for intensive therapy covered by the province, but those ages 5 and up will no longer be eligible as part of a revamped Ontario system. The New Ontario program aimed to cut wait times in half for Intensive Behavioural Intervention (IBI) within two years, and then down to six months by 2021, according to the Ministry of Children and Youth Services.

The decision meant that 2,200 children ages 2 to 4 would be removed from wait lists over the next two years, while some 1,378 in treatment after age five, over half of the 2,000 currently served, would be transitioned out with an $8,000 grant intended to subsidize the less intensive Applied Behaviour Analysis (ABA) therapy.  Denying access to children over age five left many near desperate parents completely “heartbroken” and some totally outraged over being denied the needed services.

Ontario’s Minister of Children and Youth Services, Tracy MacCharles, broke into tears when faced with the barrage of opposition, and Irwin Elman, the provincial Child and Youth Advocate, sided with the aggrieved parents, urging the government to postpone its plans. “The debate is not about waitlists,” He added. “It’s about children. It’s about people, and it is about their possibility and futures.”

Addressing the growing incidence of children with autism is now such a critical public policy issue that it recently attracted the attention of The Economist, one of the world’s most widely read business magazines. Since 2000, the share of eight-year-olds diagnosed with some form of autism spectrum disorder, including Asperger Syndrome, has doubled to one in every 68 children or 15 in every 1,000 kids.
AutismIncidence2000to2012Autism affects different people in different ways, ranging from severe communications impairment and compulsive repetitive movements to milder forms of social anxieties with a few intense, almost obsessive interests.  School can be extremely difficult for autistic children, and they are three times more likely to be bullied or ostracized by peers, and many withdraw before graduation.
In Canada, the United States and Britain, they tend to be educated in mainstream classrooms with Special Education supports, which is considered less expensive than providing intensive programs. Regular classroom teachers in all three countries regularly report that they lack the training and resources to properly serve children with autism.

The Canadian province of Alberta stands out as an exception.  Since the mid-1990s, Alberta Education has embraced more school choice, especially in special education services.  Alberta’s direct funding system provides grant support for kids with developmental disabilities, based on each child’s needs, to pay for whatever services suit them best. Options include special needs schools, a range of behavioural, speech and occupational therapies, respite care, camps, and personal support workers to accompany children to recreational activities.

Children are assessed through the Family Support for Children with Disabilities program, which determines the amount. Wait times are minimal. Parents have choices, unlike in Ontario, where IBI is the only sustained treatment covered by the province. While Nova Scotia has a Tuition Support Program, it is limited to children with diagnosed SLD attending three designated schools enrolling fewer than 230 students. Financial support to attend specialized programs is extremely rare elsewhere in Canada.

One example of such a school program is Janus Academy, a Calgary, Alberta, school for children with autism. It’s a specialized private school where parents pay $12,000 in tuition each year for a program that costs $40,000 per student to operate. In other words, providing access to a specialized IBI program at a quarter of what parents would pay in Ontario.

Teaching autistic children using IBI can be expensive, but it can produce noticeable gains., especially if started in the early years. The Alberta government underwrites most of the difference, and the school also fundraises to support the tuition subsidies. “We don’t have to fight the schools (for what the children need), they’re partners with us. And I know they are learning,” reports Janus Academy parent Tim Ingram, formerly of London, Ontario.  The intensive and wrap-around support, he adds, helps the whole family function, but it takes some extra effort to secure a place in such a school.

School can be tough for autistic children and teens, but many have a worse time once they leave the system. A study by the A.J. Drexel Autism Institute in Philadelphia found that only 19% of American autistic people in their early 20’s lived independently, away from their parents. Wherever they live many are isolated: one in four said that they had not seen friends or received invitations to social events in the past year. Some autistic people prefer their own company, but many are unhappy.

Preparing and training autistic young people for the workforce is emerging as a priority in the new economy.  While academic studies on global employment rates for adults with autism are rare, the UN estimates that 80% do not work. A survey by Britain’s National Autistic Society, a charity, suggests that only 12% of higher-functioning autistic adults work full time. For those with more challenging forms of autism, only 2% have jobs.

Job training, life-skills coaching and psychotherapy could really help in tackling the problem. An American study found that 87% of autistic youngsters who were given assistance to find a job, got one. Only 6% who did not receive support were successful. But in most countries, services disappear the moment autistic people finish full-time education.

There is hope that the life prospects for those with autism will improve in the future. More progressive business leaders and enterprises, as reported in The Economist, are stepping-up and providing more flexible employment arrangements to take fuller advantage of the truly unique skills and aptitudes of autistic people. Providing early treatment and effective intensive behavioural intervention is where it has to start.

Why is autism considered one of the biggest school challenges of our time? Why is Intensive Behaviour Intervention (IBI) so much in demand– and so rationed in our public school systems?  What’s standing in the way of provinces and states adopting the Alberta model of school choice and tuition support for intensive programs? What more can be done to properly “transition” autistic students into the workplace?  

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