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United Church Observer: Through the Cracks: For Adults With Developmental Disabilities Gaps Remain

Posted Mar 21 2014 11:14am
The United Church Observer article, Through the cracks , by  Kevin Spurgaitis,  tackles issues relating to the lack of available care for adults with severe developmental disabilities including autism disorders.  Simply by addressing, and shining a spotlight on the lack of places that can provide permanent residential care to those with autism disorders they have helped to address the hard realities faced by many with severe developmental disorders including severe autism.  I was interviewed by telephone by Kevin Spurgatis, who was exceptionally courteous and respectful, qualities which show up in the article itself.  I thank Kevin Spurgaitis and the United Church Observer for this effort.   

It will probably come as no surprise though, to anyone who knows me on a personal level, or knows my views on disabilities and the role played in Canada by the Canadian Association for Community Living and its New Brunswick version the New Brunswick Association for Community Living, that I believe Mr Spurgaitis's article does not address the responsibility of the CACL and provincial divisions like the NBACL  for their roles in creating the cracks through which people like my son with severe autism disorder, intellectual disability and seizures fall.

The feel good and rigid anti-institution mindsets of these organizations have helped prevent the development of facilities which would provide permanent residency, care by properly trained caregivers and treatment for their serious conditions.  The ACL organizations persistently argue against anything that might be labelled an "institution" even if there is no alternative available.  In doing so the NBACL has helped push NB'ers with severe autism disorders to lives spent in the Restigouche Psychiatric Hospital, to hospital wards and to facilities out of province such as the Spurwink facility in Maine. 

This is not speculation on my part. I have participated in several education and adult disability reviews in New Brunswick in which NBACL representatives have fought bitterly against any meaningful attempt to develop the necessary facilities to ensure a quality life for those, like my son who suffer from severe autism, intellectual disability and seizures. As long as the NBACL continues providing feel good cliche coverage to governments for failing to provide a modern residential care and treatment facility  to those with severe needs, people like my son will suffer much more limited lives.  Here in New Brunswick our government's favorite charity organization, the NBACL, is a major contributor to the problem, they help ensure that people like my son will continue to fall through the cracks.
Although my views diverge from the portrait of the CACL and their provincial counterparts as set out by Mr. Spurgaitis and the United Church Observer I do genuinely appreciate the fact that they have raised the issue.  As I said I also appreciate, very much, Mr. Spurgaitis' courteous, respectful questioning and his inclusion of severe autism disorder in his article:
Through the cracks


Chris Stafford, 21, has a high-functioning form of autism. Photo by Jill KitchenerCommunity living offers hope to people with developmental disabilities, but troubling gaps remain. Just ask Chris Stafford.
By Kevin Spurgaitis 
W
hen the autumn morning sky brightens over Burlington, Ont., the sight of the lakeshore dominates the leafy landscape. In nearby cul-de-sacs, post-war bungalows and row houses with curtained windows and manicured lawns intermingle. Inconspicuous among them is an older-style residence still painted pale beige with waist-high fencing all around. At the front, a shiny black plaque boasts of recent Rotary Club renovations, while a rubber doormat simply welcomes “Dear Friends.” 

Inside, there is little in the way of decoration, but small touches express the lingering idea of home: knick-knacks and candy dishes have been placed on tables; knit blankets have been draped over a sofa and set of recliners. 
As you enter one of the house’s four bedrooms, it’s possible to surmise the tastes and interests of its occupant. A fresh coat of electric blue paint brightens the walls, which are also covered with posters, including one from the TV sitcom The Big Bang Theory. Neatly piled by the bedside are a faux-suede Stetson, a plastic samurai sword and copies of Japanese mangafiction — graphic novels that are reassuringly linear to Chris Stafford. 
“Honestly, when it comes to manga, I just love it,” says the 21-year-old as his mother, Andrea — who is visiting Chris for the day — intently watches from the corner of the bedroom. 


Chris Stafford has a high-functioning form of autism. Since last fall, he has been living at Stratton House, a community-based home for people with developmental disabilities, along with three others and their aides. 
If societies are measured by the way they treat their most vulnerable members, then it’s worth examining how we regard people with developmental disabilities. In Canada, more than 680,000 children, youth and adults are living with autism, cerebral palsy or Down syndrome, according to the Canadian Association for Community Living (CACL). At one time, people with developmental disabilities were segregated from society and warehoused in government-run institutions. But in recent decades, a philosophy of inclusion and equality has emerged, forcing most of the old institutions to close. In their place is community living, the idea that people with disabilities are best served by living with their own families, independently or in group homes. 

F or advocates of community living, the change in provincial policies was long overdue. But there’s a huge gap between the rhetoric and the reality. In Ontario alone, more than 12,000 people with developmental disabilities languish in a queue for group housing — some for as many as 15 years. And another 3,700 families await direct funding for in-home care, according to government statistics. That’s left many parents providing care themselves, helping their children to perform daily tasks, such as bathing, dressing and eating — or paying health-care and daytime aides an estimated $1 million over a lifetime. And for those like Andrea Stafford, who have children with autism, the expected price tag for physio and speech therapies, as well as what’s called applied behavioural analysis, is $100,000 per year.

When you first meet him, Chris Stafford comes across as an introvert — maybe slightly eccentric. He sometimes avoids eye contact or deviates from the subject at hand and resolutely attaches to another. He can recite verbatim conversations that happened a year ago. 


Dressed in a denim jacket and jeans, an untucked T-shirt and sneakers, Stafford projects a youthful veneer. But his slightly furrowed eyes and mouth hint at an agonizing past. His troubles all started when he lashed out against his high school aggressors: those who jeered and forced him to crawl on the floor for loose pennies, capturing one demeaning episode on video and posting it to YouTube. It was “disgustingly cruel,” his mother says. Chris Stafford fell to pieces. His expulsions from school for fighting led to more fights at home — and a series of attempted suicides, for which he was hospitalized. 
His mother, who is a single parent of three, working as a college program co-ordinator and studying for her doctorate, could not provide around-the-clock supervision of her son — especially not after he cracked her cheekbone and fractured her left foot. And there were no spaces inside group and respite homes, which offer families a break from primary caregiving, both permanent and temporary. So, after he spent three months within the social welfare system, including at a home for troubled teens, Halton Region Support Services suggested another alternative for the then 17-year-old: a shared room in a homeless shelter in downtown Hamilton. Shelter life was more than both Staffords could handle, though. Chris often missed curfews. Eventually, he went missing for an entire day, when he says he had to fend off a knife-wielding drifter. 

Chris Stafford and his mother, Andrea, at the Burlington, Ont. group home where he lives. Photo by Jill Kitchener
Chris Stafford and his mother, Andrea, at the Burlington, Ont. group home where he lives. Photo by Jill KitchenerA
ndrea Stafford, who visited her son almost daily, still tries to imagine what that period was like for Chris. The details of his own account shift with every telling. “I honestly never thought in my wildest dreams that they would place a teenaged autistic person on the streets of Hamilton,” she says. Around that same period, she ended up in the hospital on life support, after her immune and respiratory systems failed due to stress and her weight plummeted to 85 pounds. “Actually, I thought that it was more of a nightmare, and I just kept wanting to wake up.” 
Eight months after Chris was kicked out of high school and the family’s ordeal began, he was finally offered a spot in a Burlington group home for people with severe developmental disabilities. It was the first of many.


Back in the late 1700s and 1800s, there were no services for people with developmental disabilities in Upper and Lower Canada. Those who weren’t provided for by family members often ended up incarcerated, living in deplorable conditions. In the 1830s, attitudes began to shift marginally, and concerned citizens lobbied the government to establish an alternative to jails: asylums. The first of these was built in Orillia, Ont., in 1876 — the forerunner to 15 other facilities in the province, giving residency to 50,000 people over time. And with industrialization came an increase in demand; more people migrated for work and turned their loved ones over to the state. Additional institutions were erected to meet the need. Well into the 20th century, these places were the only option available to people whose families couldn’t care for them. 
Institutions fell out of favour by the mid-1970s, as ideas about integrating people into mainstream society began to flourish. In 1982, Canada’s Charter of Rights and Freedoms gave people with developmental disabilities the same status as every other Canadian. Provinces and territories soon followed suit with their own human rights codes. And in 2010, Canada ratified the United Nations Convention on the Rights of Persons with Disabilities.
Today, only four large-scale, provincially funded institutions — housing over 750 people — remain in Canada: the St. Amant Centre in Winnipeg and the Manitoba Developmental Centre, as well as Saskatchewan’s Valley View Centre, which is scheduled to close within the next three years, and Alberta’s Michener Centre, also facing closure. 
Ontario’s last three institutions shut their doors in 2009. The Huronia Regional Centre in Orillia was one of them. When it opened in 1876, it was called the Orillia Asylum for Idiots. At its height in 1968, the sprawling red-brick facility on the shores of Lake Simcoe housed more than 2,600 people. Last September, the Ontario government reached a $35-million settlement with former residents of the facility for the emotional, physical and psychological abuse they experienced there. Ontario Premier Kathleen Wynne formally apologized to them in December, telling the press that the province “broke faith” with some of its most vulnerable residents within “the very system that was meant to provide them care.”
Even in Huronia’s cemetery, where 2,000 bodies are buried, many of the tombstones bear only numbers — no names. Some grave markers were at one point repurposed as patio stones leading to a nearby group home. 
By midday, the late fall sky brightens over Burlington. Chris Stafford and his mother visit a music store, which stands out in a cluster of low-rise buildings, in the city’s industrial section. Inside, immaculate guitars, pianos and drum sets are proudly displayed. For Stafford, it might as well be a holy place. With his eyes widened and arms extended stiffly, he gives a look of utter reverence. Drawing the occasional stare from patrons, he grabs an acoustic guitar and excitedly strums popular songs like Oasis’sWonderwall and Tom Petty and the Heartbreaker’s Free Fallin’. “Hey, do you know that one? Do you know that one?” he queries after each.
“Well, basically, I’ve been playing guitar since I was 14. I got my first learner’s guitar at 18,” Stafford says. “I just really like music in general, but mostly stuff to do with country. . . . I love Taylor Swift’s Safe & Sound, especially. So whenever I’m really upset, I play music or just listen to it. It automatically calms me down, and I really like that —” 
“Hey, Chris, you’re about to go off on one again, buddy,” his mother quips with a throaty laugh, cutting short his enthusiastic rambling.
With short-cropped blond hair and a tawny complexion, Andrea Stafford is a ready mix of tenderness and assurance. For four years, she taught her son the intricacies of sarcasm — partly so he could notice whenever people made fun of him. Monty Python is one of their favourite comedy acts. In fact, whenever things become intense between the two, they’ll recite lines from the movie Life of Brian — affectionately and in mock English brogues.
“Yeah, whenever I’m accused of something I didn’t do or something that I don’t want to admit, I’m always telling my mom — as Monty Python would say — ‘Oh, just piss off,’” Chris says.
As her son continues to marvel at the guitars, Andrea Stafford quietly confides that she considers her family “fortunate” because Chris was finally welcomed into a group-home setting.
'There is a crisis in the fairly basic support people with developmental disabilities need 

to 
 enjoy a better life in those same communities.'


T he Canadian Association of Community Living has long advocated for including people with developmental disabilities in society. Founded in 1958, the CACL promotes their participation as “full citizens” through deinstitutionalization, education and individualized supports. In essence, community living refers to a residential setting: family, group, respite or self-owned homes, the organization says. It’s meant to foster new abilities and a degree of dignity.
“We’re making significant progress on [deinstitutional-ization],” says Tyler Hnatuk, the CACL’s national co-ordinator of policy and programs. “It’s been families’ values, vision, passion and commitment that have inspired this movement for more than 60 years now. That’s enabled even more families to imagine and pursue a good life for their members with a development disability.”
But Hnatuk is the first to admit that what the CACL helped to create is far from perfect. “The closure of institutions has been a process that’s been very carefully pursued in order to ensure that investments are moved to communities,” he says. “But it’s been brought to light that in many areas, there is a crisis in the fairly basic support people with developmental disabilities need to enjoy a better life in those same communities. . . . And that’s something inherently unjust.”
In addition to the long waiting lists for group-home spaces and in-home supports, people with developmental disabilities are four times more likely to be excluded from community activities than persons with other disabilities, the CACL says. They also experience some of the highest rates of violence and abuse, women especially. Most are unemployed. And only about a third of people report that they make decisions about their everyday activities — whether it be conducting a financial transaction, signing a lease or accessing medical treatment — compared to more than two-thirds of people with other disabilities, according to the CACL.
Of course, attitudes toward people with developmental disabilities are slowly changing. But every so often, extreme cases of hatred and abuse surface in the news: a venomous note left for the mother of a 13-year-old boy with autism in Newcastle, Ont., recommending euthanization; a 22-year-old with a developmental disability held captive in a Hamilton apartment for three weeks — robbed, beaten, burned and abused.
It wasn’t supposed to be this way. Canada’s Registered Disability Savings Plan, which began in late 2008, provides incentives and grants to people with disabilities, promising a better quality of life. More recently, provinces have begun to offer assurances, too, if only tepid ones. In September 2012, Ontario’s then Minister of Community and Social Services John Milloy told the Globe and Mail, “I’m aware there is more demand than available resources out there. . . . I have a tremendous sympathy; I understand the challenges they are facing.” 
Andrea Stafford has faced many challenges in her search for a group home for Chris. So far, he’s lived in three. For one reason or another — usually behavioural — Chris wasn’t the “right fit.” These days, she doesn’t see her son as often as she would like; his newest group home is about a 90-minute drive from her home in Georgetown, Ont. “This was the best that they could come up with because of the shortage of residences,” she acknowledges. 
Dr. Wendy Roberts, the co-director of the Autism Research Unit at Toronto’s Hospital for Sick Children and the vice-chair of Ontario’s new blue-ribbon advisory panel on autism services, says she sympathizes with parents like Andrea Stafford. “These families didn’t ask to live in this world of autism and developmental disability. But they’re in it, and they now have no choice.”
To those on the outside, Roberts advises, “Just get to know a family who has a person with a developmental disability and closely look at what it’s like for that person and their family. It’ll really change your awareness of the systemic biases against them that exist.”
Twilight comes, giving the sky a bluish-grey translucence. The canopy above Burlington is still bright enough to turn treetops and chimneys into silhouettes, and sufficiently dim to make the streetlights beam. In the growing gloom, Chris and Andrea Stafford return to Stratton House after a day of shopping. Exiting the car, Chris walks briskly up the driveway toward the front porch, his mother right behind him. When she throws her arms around him, he offers no resistance — but no farewell, either. Instead, he scrunches his eyes ever so slightly again, leaving his face with a couple of expressions: stoicism and then a kind of mild amusement. 
Chris still suffers bouts of depression, according to his mother. And he still holds some resentment for being “dumped” — as he describes it — on the streets of Hamilton not long ago. This acrimony has loomed over their visits. But it’s also had merciful limits; Chris has conceded that his mother had few options. So the two are now making headway, together, at least in small increments. 
“There by the grace of God, my son isn’t in a jail somewhere even farther from home,” Andrea Stafford says. In fact, community living — particularly in group homes — has saved Chris, she insists. “But after travelling this road, I still can’t believe that, by and large, we have so little regard for people whose brains work a little differently. . . . Even though they’ve deinstitutionalized them, nothing has dramatically changed other than the fact that they’ve opened up the doors [of institutions] and said, ‘Here, now you take them.’”
For Andrea Stafford, there are many points of culpability. But she is adamant about what needs to happen next: as this next wave of children identified with autism and other developmental disabilities reaches adulthood, there should be a wider range of disability-related supports and far more group and respite homes than there are now.
 “You know, my hopes and dreams for Christopher are no different than any other parent. First of all, I want things to work out for a while in his newest group home. . . . I want my child to be happy. I want him to live a little more independently and in a manner that gives him dignity and pride.” 
Andrea then looks over at her son, catching his inquisitive glance. “Hey, isn’t that right now, buddy?” she queries. For a brief moment, Chris retreats into a mental closet. A look of perplexity pops onto his face. “Well, I guess that’s kind of true, Mom,” he says, before responding with something less resembling conjecture. “Okay, yeah, yeah, it’s definitely true.” •



Rasika Aklujkar strikes a classical Indian dance pose. Courtesy of Gautam Arora
'Even as a person with Down syndrome, my accomplishments are many.'


Rasika Aklujkar: Seeking independence


Rasika Aklujkar, 39, has Down syndrome — and an ever-growing list of achievements. 

After earning post-secondary certificates in family daycare and childcare aid in 2002, she worked as a summer recreational facilitator for youth with developmental and physical disabilities, volunteered for homebound seniors and later served as an occasional office assistant at Community Living British Columbia. 

“Even as a person with Down syndrome, my accomplishments are many,” Aklujkar says. “I don’t consider my disability as a flaw in me. I’ve been living with it for 39 years now. . . . I know I learn slowly, but taking time to understand things is a good thing. What should matter is that I work with my abilities and my strengths.”

Today, Aklujkar lives in Richmond, B.C., with her mother, Vidyut, a retired lecturer of Hindi and Indian literature at the University of British Columbia (UBC), and father, Ashok, a professor emeritus at UBC. Originally from Pune, India, they have been in Canada since 1968.

“I don’t think there are enough opportunities — even straightforward, bread-and-butter jobs — so that she can occupy her days fruitfully,”  Vidyut says. “They only happen off and on.”

Aklujkar has also worked as a junior dance instructor, teaching Bharata Natyam-based story dancing, a classical Indian style. Wearing a pink and purple silk sari with gold embroidery, she’s made meticulous hand gestures and struck sculpturesque poses in schools, daycares and public libraries for more than a decade. 

When asked about her outlook, Aklujkar draws on the Indian narrative of the dancing butterfly. The original story goes like this: a butterfly, considered to be a wonderful dancer, attracts the attention of other animals around her. But when she hears the birds singing and sees their celebrity, she tries to emulate their song, failing spectacularly. Ashamed, she loses confidence in her own dancing — and her beautiful wings.

“You see, having a negative attitude leads to depression,” Aklujkar imparts. “But a positive attitude” — and being okay with your own abilities — “brings you happiness.”

In addition to continuing to work, Aklujkar envisages living independently in an apartment: “I do want to be seen as being capable of working, capable of living a good life, capable of doing the things I know I can do. . . . And who knows, maybe one of these days, I may end up doing that.”

According to the Canadian Association for Community Living (CACL), there are approximately 500,000 working-age adults with developmental disabilities, who with “targeted support, community investment and employer leadership” could contribute to the labour force at rates similar to other Canadians. In Canada, though, their employment rate is only 25 percent, and an estimated 73 percent of those who live alone are below the poverty line.

“Sometimes, being ‘ready, willing and able’ is not enough,” the CACL acknowledged in its March 2013 report. “People with intellectual disabilities face a range of systemic factors that create disincentives to employment. Such factors include but [are] certainly not limited to provincial income support programs that penalize people for earning above capped limits; difficulties in qualifying for ongoing employment supports . . . ; continued usage of sheltered and segregated employment services; and negative community and employer attitudes.”

What’s needed for inclusive, competitive employment opportunities are “cooperative partnerships between and among people with developmental disabilities, employers and community service providers,” the CACL’s Tyler Hnatuk says.

—K.S.


Conor Doherty with his father, Harold. Courtesy of the Dohertys'[Conor’s autism] is not a joy, a blessing, a superior ability or a different way of thinking. It’s a serious disability.'C
onor Doherty: reaching adulthood 

Family caregiving is a protracted commitment under any circumstance. But for those parenting children with developmental disabilities, the responsibility can be truly lifelong.
Eighteen-year-old Conor Doherty’s impending adulthood has been on his parents’ minds ever since he was diagnosed as a toddler as being “severely autistic” and developmentally delayed. Like many in their situation, the Fredericton parents wonder what will become of their son, who is largely non-verbal, throws frequent tantrums and will always need help cleaning, dressing and eating. Not even respite homes will take on Conor. 
Although he stands six feet, weighs 195 pounds and sports thin facial hair, Conor still has the demeanour of a young boy. He gushes at his Kermit the Frog plush toy. He runs and jumps along Fredericton’s riverfront trails. He swims every Friday. And each weeknight, he fastidiously packs his school lunch bag, placing it by the door. 
Still, his severe autism can be difficult for parents Harold and Heather Doherty. It involves disruptive repetitive actions, epileptic seizures, small breakdowns, self-injury and reactive violence. A few years ago, Conor bit his father’s bicep, piercing the muscle.
Says Harold Doherty, who is acting president of the Autism Society New Brunswick, “[Conor’s autism] is not a joy, a blessing, a superior ability or a different way of thinking. It’s a serious disability — something that I have been determined to face throughout his life so that I don’t ever do him a disservice.”
Last spring, Conor spent six days in intensive care after responding adversely to anti-seizure medication. He developed a rash, lost his speech and movement, and was unconscious for two days. He acquired rhabdomyolysis, a condition in which the muscles break down and release substances that imperil the kidneys. As Conor lay in the hospital for two weeks, his parents sat and waited there, too — his mother sleeping on a cot beside him every night. 
Conor has since recovered but requires physiotherapy to rebuild his damaged muscles, balance and co-ordination.
At 59, Harold recognizes that his son may outlive him. He thinks community living ideals about “independence and interdependence” need to be scrutinized, and even entertains the prospect of large-scale institutions returning to his province. In a May 2013 letter to New Brunswick Premier David Alward, he writes, “I ask you to commit to a modern, professional system of adult autism care. . . . [An intermediate autism facility] would provide desperately needed, permanent residency for the most severely affected by autism disorders . . . and assistance for parents whose older children are still living with them.”
After all, there’s a point when Doherty and other parents will no longer be able to provide a certain level of care — when their child’s special needs become too great to tend to. For them, the answer is fairly straightforward: even more choice is needed. 
—K.S.
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