Anita remembers the day her mother died like it was yesterday. Although it has been five years, the memory remains etched in her brain. With an unwavering tone, Anita tells her story.

It was about 8 a.m. on a school day. Knowing that the bus would be there in 20 minutes, then-13-year-old felt anxious lying in bed, waiting for her aunt or nurse to help her get ready as they do every morning. Anita was born with cerebral palsy affecting her legs, and sometimes her hands and speech, and requires 24-hour care. When her mother was diagnosed with cancer, her aunt uprooted her life in the Caribbean, leaving behind her children, to care for Anita.

Finally, the bedroom door opened. She knew her mother was very sick, but hearing the words was like a stab to her gut.

“I just remember myself kind of like falling back on the bed and screaming a little bit,” Anita says. “I didn’t really start crying until after the funeral because that’s when my whole family came to my house, and I’m thinking ‘Okay, everyone else is here, but where’s my mom?’”

While Anita’s aunt is willing to disrupt her life to provide full-time care for her, she often mentions that she would like to return to be with her family. Anita’s father is in a Toronto rehab for alcohol addiction.

On the second floor at the Bloor location of Safehaven Project for Community Living, Anita looks at home — confident, sometimes shy — but with a presence that says: notice me. Perhaps her outgoing personality stems from the care she has received for about six years at Safehaven, a recreational and leisure program that provides a break for children with disabilities and their families. While Safehaven has given Anita and her aunt time to relax, it has also given Anita a sense of belonging and community.

“I was kind of scared coming here at first, this is my first time being away from home,” Anita remembers. Now, she considers it a gift.

“Meeting the other kids was like a blessing because I’ve never really had a perspective on different disability before,” Anita says. “These people have different machines and they operate different and it’s kind of cool to watch because it gives me a perspective on how other people live.”

This will all end in a few months.

At age 18, Anita is already well into her transition to the adult system. This year, when she turns 19, she will not be able to seek respite at Safehaven anymore. Best case scenario would be if she were already on a waitlist for adult respite, which often is into the thousands. However, Anita is not well-informed about her transition, and so does not know whether she is on a waitlist yet.

There are no respite services specifically for young adults. Instead she will be lumped together with individuals of all ages including geriatric patients. She will not be able to continue seeing her lifelong doctors at The Hospital for Sick Children (SickKids), and funding for life’s necessities will drastically decrease.

Becoming an adult for many means voting, legal drinking, and independence. For individuals like Anita and her family, the onset of adulthood is a point of crisis where families are thrust into a new, confusing system with long waitlists, lack of specialty-trained and available healthcare providers, and pleas for funding.

About 6.2 million Canadian have one or more disabilities, including developmental as well as physical challenges, according to data from Statistics Canada, 2017. More than 540,000 youths between the ages of 15 and 24 have one or more disabilities, with cerebral palsy being the most common physical disability among children. One out of every 400 individuals in Canada have been diagnosed with cerebral palsy.

However, there is an absence of data on changes in life expectancy or specific numbers tracking each disability. Statistics Canada conducts the “Canadian Survey on Disabilities” every five years, but it does not touch on life expectancy, or include children younger than 15 years.

Despite a lack of numbers, those who provide support and care for children with disabilities are concerned that, thanks to medical advancements, more children are aging into early adulthood and beyond. As it stands now, systems in place for disabled adults are not at all ready to adequately support this new and increasing population who may need physical, cognitive or social supports — or a range of these.

 

Information Source: “Nowhere to Turn,” Paul Dubé, Ontario Ombudsman, 2016

The treatment and needs of disabled children and their families have been neglected in the past, and advocates are not prepared to let history repeat itself.

On Dec. 9, 2013, Kathleen Wynne, then premier of Ontario, made a public apology for the harm caused by the institutional care for individuals with developmental disabilities that existed for over a century before.

“I offer an apology to the men, women and children of Ontario who were failed by a model of institutional care for people with developmental disabilities. We must look in the eyes of those who have been affected, and those they leave behind, and say: “We are sorry,”” reads part of her statement.

The province mobilized to create a new model, one “promoting social inclusion, individual choice and independence.” However, a 2016 report titled “Nowhere to Turn” by the Ombudsman of Ontario found that when individuals with complex disabilities “reach a crisis point, service gaps often leave them and their families without any real choice, and dependent on a system unresponsive to their needs.”

The 2016 investigation by the Ombudsman received more than 1,436 complaints about the province’s developmental services system, revealing “a fragmented, confusing, and complex assortment of hundreds of community agencies and local processes, impossible for many individuals with developmental disabilities and their families to navigate.” The investigation found that access supports and services proved to be far too complex and vary across the province.

Matt Swan is a single parent living just north of Toronto with his daughter Leah, who will be 21 in October. Leah was born with spina bifida and hydrocephalus. She uses a wheelchair, is fed by a tube, and has a urinary catheter. At age 16 she was diagnosed with autism.

From day one, Swan knew that Leah would have a disability, so he spent a majority of his time creating and cultivating a support network for their small family unit.

“I’m a single parent, too, so for me a support network is very, very important. It’s doctors, it’s nurses, it’s a personal support worker to come into the house every once in a while. It’s respite care,” Swan says. “Then, the instant Leah turned 19, all of that’s gone.”

Swan likens the transition to “falling off a cliff.”

After Leah turned 19 in 2017, Swan booked her for respite in November and in January. She went for her November respite, but about two weeks prior to her January stay, Swan received a call saying that they wouldn’t accept her because she had aged out. Swan had put down a non-refundable deposit of about $500 on a gala with his girlfriend, a rare occasion for him and what he says was “my one time to be able to get out for a weekend.” Without warning, he had to scramble to find adult services and respite nearly one week beforehand.

The financial repercussions of a lack of respite for adults are substantial for families. Families are already paying between 2.5 to 20 times the amount of medical costs alone for their child — depending on individual needs — compared to able bodied children. Parents also experience far greater absenteeism from work, or lost employment altogether, to stay home and care for their child in the absence of respite. Despite this, access to respite is near impossible because of long waitlists.

A shortage of respite centres leads to a bottleneck effect, leaving adults with developmental and medical disabilities without access to community supports and services.

According to the Ombudsman’s report, a senior Ministry official said: “unlike other social service areas, residential and other support programs for adults with developmental disabilities evolved through grassroots efforts of parent groups and advocates in response to concerns with provincially-run institutional care.”

That’s what happened  in rural Southwestern Ontario. Natalie Steenstra, respite coordinator for the Huron Respite Network, says that a lack of facilities has led to a “host family respite” model, whereby families in the community take in someone for one weekend a month paid by their network.

“We received a Trillium Grant last year in hopes to grow our program, to increase our host families, they have to do a full home study similar to what you would do for a foster family through Children’s Aid Society (CAS). So that costs money,” Steenstra says. “Hopefully in those tiny villages in Huron County, we can find a family in each one that would be willing [to be a host family], then families aren’t having to travel because obviously transportation is a big issue for people.”

Huron Respite Network is located in in the rural town of Clinton, Ont. with a population of about 3,200 people. A network of 13 different agencies came together 20 years ago, with varying specialized skills, to create one umbrella network meeting a variety of needs. It provides respite for transitional age youth and adults to give families a break.

“Then we sit down with them and create a respite plan specific to the needs of that family,” says Steenstra, explaining how the model functions to meet independent needs case by case.

In about 2008, the Southwest Region mobilized to create the “ideal model” for respite, which is tailored to the specific needs of each family, Steenstra explains. “It is consistent, periodic, and provides that time for them to be resilient, to get rest,” Steenstra says. However, she admits that as a small organization, this idealistic system can serve only a limited number of people.

“For the entire county, we serve about 120 families for respite, that’s all the capacity,” Steenstra says. They provide respite for anywhere between 25 to 35 adults throughout the year, and the waitlist from Developmental Service Ontario (DSO) is over 50 people.

“So unless somebody passes away or receives a huge amount of Passport Funding, or gets a residential spot in like a group home with community living, then we never get openings.” This is mainly because once an individual receives money from Huron Respite they receive it annually and become used to it. Steenstra says that if this regular funding were to be taken away and given to someone else, their life would “fall apart.”

However, Steenstra concedes that this community-focused solution probably wouldn’t work in a large urban centre, but only a small rural community, which has established trust and neighbourly relationships.

The Ontario government tried to grapple with solutions for respite gaps more than five years ago.

So, in October 2013, Ontario’s Legislative Assembly formed a Select Committee on Developmental Services to put forward recommendations to the House “with respect to the urgent need for a comprehensive developmental services strategy to address the needs of children, youth and adults in Ontario with an intellectual disability.” After hearing 140 presenters at 14 public hearings, and over 300 written submissions, The Committee released a report in 2014.

“Presenters described serious barriers to support across the province including long waitlists for many services,” the report says, listing: “repeated, onerous, and invasive assessments; the abrupt termination of children’s services at the age of 18 and school-based services at age 21; unmet health needs due to inadequate primary and dental health care; and a serious lack of services and supports in northern, remote, and First Nations communities” as leading concerns.

The most common concern was that individuals and families were able to access assistance only once they are in crisis. However, then someone else is pushed further down on the waitlist, a cyclical issue. So, the committee called on the government to eliminate existing waitlists providing the right to “appropriate and timely supports and services throughout their lives.”

According to Steenstra, while their agency does a lot of work trying to help children get respite and build relationships in the community because “the dollars are there for them,” once they transition into adulthood they become completely cut off and go into crisis. “All we can do is tell families to call their MPP, call the DSO, call the Ombudsman…there’s nothing we can do.” They have no authority over choosing who is allowed back through their doors into adult respite after aging out.

As if this isn’t enough, Steenstra says that the cost of professional respite continues to increase. “Because of gas, (getting from one part of the county to the other can be over an hour drive), respite providers are requesting a higher amount,” Steenstra says. “All we can do is decrease the hours families receive to increase the hourly rate.”

Much like Matt Swan’s situation, Cheryl Ford had to find adult respite for her daughter Maddie once she turned 18. Maddie was born with Toriello-Carey syndrome. “That’s what we go by,” she tells me, but adds that Maddie has been investigated to the nth degree and also has a heart defect which has been repaired, a brain defect and, as a result, a seizure disorder. She also has low vision and is not able to walk well. For adult respite, their options in Toronto were few.

According to Ford, they had no choice but to put Maddie in two separate places because of the lack of capacity, One is at New Visions Toronto, which is apartment-style respite for children and adults with complex disabilities. “They have a respite bed with two permanent residents, two women, one is in her forties and one 20. So, not too bad,” Ford says about the age gap. However, Ford remembers visiting with her other daughter, Emma, who kept commenting on how old the residents were.

If it came down to needing to house Maddie in a permanent home, among the choices would be an old age home. “There aren’t enough group homes around to fulfill the need to put your young adult in an appropriate place.” Ford says she has a neighbour in their late 70s with a daughter in her late forties with cerebral palsy. “Both have health issues and you know, they don’t want to just put her anywhere, but if a crisis comes up that’s exactly where she would go. And you have to bear in mind too, that the waitlist for a nursing home is horrendous.” Ford says that they are about two to three years long.

“What the government needs to do is to address that because all of us parents are getting older and eventually we won’t be able to care for these kids at home physically,” Ford says.

Ford says the key to managing the transition is “getting all your ducks in a row early,” especially when it comes to funding.

“When she was 15, we put her name in with Disability Services Ontario in order to get what they call Passport Funding, funding for respite for day programming.”

Both Ford and her husband are nurses, with Ford working part time and her husband working full time. They also have another daughter who is 14. Ford says that her life is busy as it is, but for someone who has three or four children, putting one on the list at 16 for Disability Services often gets forgotten. This, she says, is how disaster strikes and waitlists lead to crisis.

While all the funding Maddie was receiving was cut when she turned 18, her Ontario Disability Support Program (ODSP) benefits kicked in. However, Ford says that even though they did everything when they were supposed to, Maddie was without special services for about seven or eight months.

However, Ford says that money covers only a small portion of the services they need, such as respite and day camp at Holland Bloorview. “Like we said to our respite worker who we pay per hour, ‘Well, I don’t know what’s going to happen after March [when Maddie turns 19] because I don’t know how I’m going to pay you’,” Ford says, adding that they don’t want to let the caregiver go since he has been working with Maddie for several years and is a good fit for her.

Maddie has been given some respite covered by OHIP from what used to be Community Care Access Centre (CCAC), now known as LHIN Homecare Services (LHS).

This allows Maddie to receive home care, which provides a personal support worker, three hours for two nights per week. Ford pays out of pocket for another respite worker to work two more nights a week for four hours. She says that gets expensive.

“I know a family and their son (whose needs are) actually a lot more complex than Maddie with a suction, a feeding tube, and needs to be lifted into the chair with a hoyer lift — [an assistive device for patients to move from a bed to a chair],” Ford says. “She got nursing care for the night, which I believe she was paying for with special services at home funding, and when that got cut, she had to find that money from somewhere else.”

Ford estimates that can be anywhere from $20 to $25 an hour.

What is clear is that disparities exist based on income and resource availability. A Government of Canada report titled “An Environmental Scan of Publicly-funded Programs in Canada,” concludes that the availability of respite across Canada “varies widely depending on provincial/territorial financial resources and the availability of qualified workers.” It also reports that the availability of respite varies when “low-income families may be unable to afford the cost, even though they receive some public assistance.”

Information Source: Respite for Family Caregivers – An Environmental Scan of Publicly-Funded Programs in Canada

The reality is that for many, it all comes down to money. A large piece of the ethical issue surrounding disability in Canada is resource allocation, says Marika Warren, Assistant Professor in the Department for Bioethics at Dalhousie University. According to Warren, making choices in healthcare is a zero-sum game.

“Getting resources in one area means they aren’t available to another,” Warren says. When you stop to question where the money is going, that is when the ethical issue comes up. “I can see that programs and services that support function for people with disabilities are habitually underfunded and contributing to a stigma and contributing to disadvantage.”

According to Warren, there are two reasons why a moral and ethical society should address these needs: economy and equality.

Warren says that when we don’t invest in supports and services, we pay in terms of reduced productivity, increased use of other social services, and increased demand for general income supports. “We are paying one way or the other and then possibly paying more when we don’t fund services that really increase function,” Warren says. “There’s the sense that if we invest some money in supports and services, we get that and more back in taxes and increased productivity.”

Warren says people with disabilities are no less members of the society than anyone else. “So they have an equal right to expect an environment in which they can flourish,” Warren says. “Where some of the difficulties that they might have with function and flourishing are related to social design so that it benefits the majority, then we have an obligation again — based on that recognition of their equal claims — to provide supports and services that make it more likely that they will be able to flourish.”

According to Statistics Canada, low-income rates among Canadians aged 25 to 34 with a disability were 29.4 per cent, and one-third of youth with severe disabilities reported being refused a job because of their disability.

We have a long way to go in terms of attitudes and also concrete material supports for people with disabilities, Warren says. “There are fewer resources, fewer supports, fewer services for people with disabilities who transition out of the pediatric care system,” she says. So, what does that mean about expectations? Warren suggests there are two solutions: either devote money to pediatric care, meaning society does not pay dividends once an individual is an adult. “Or we don’t expect life expectancy to be that long, which certainly it might have been the case at one point, but is no longer the case for a number of reasons.”

The increasing demand for support is connected to positive medical developments. Life expectancy for people with disabilities has increased over time due to medical advancements.

Dr. Unni Narayanan is a pediatric orthopedic surgeon at SickKids specializing in children who have cerebral palsy, as well as other neuromuscular conditions and lower limb deformities that require reconstruction. Narayanan says that because of medical advancements, many people with congenital conditions are living far longer.

“In the area of musculoskeletal conditions, children with muscular dystrophy used to die in their late teens or early twenties,” Narayanan says, “with medical advancements, they are now living into their thirties, maybe even older.”

Narayanan says that this now means when individuals born with these congenital disorders grow up, they will inevitably need an adult orthopedic surgeon.

A report titled “Life Expectancy for People with Disabilities” by Raji Thomas and Michael P. Barnes found that while longevity for people with disabilities is increasing, and factoring physical and cognitive factors into the equation is important, it is equally important to consider other factors. “The importance of a good quality care package, attention to vocational rehabilitation if at all possible and maximizing income to fund the necessary care equipment and reasonable lifestyle is important in the context of personal injury litigation.”

With a growing population of youths with disabilities aging into adulthood, the gaps further increase.

The Ombudsman’s report found that Ontario’s general hospitals are housing hundreds of adults with disabilities “at significant cost to the health system,” sometimes spending years waiting for services. “Most hospitals typically lack the specialty training and programming necessary to serve those with developmental disabilities.”

Hospitals become familiar places for many young children with disabilities. In fact, Narayanan becomes acquainted with most of his patients while they are still in utero.

Because SickKids is funded through the Ministry of Health, their funding requires them to have a cut-off age for patients. However, Narayanan says that the hospital has recognized that age is arbitrary and there are instances where children must continuously receive care at SickKids.

“As long as I, being the treating surgeon or physician, can make a compelling argument for why that is in that child’s best interest…then they have taken my word for it and given us permission to proceed.” For Narayanan, the main problem is that there are no specialized doctors for adults with complex disabilities.

Listen to Dr. Narayanan explain the issues around transition within the healthcare system and propose possible solutions 

Disability rights and services have come a long way, but despite many advancements over the past few decades, the system is still confusing and overwhelming.

In Oct 2008, the Minister of Community and Social Services announced the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act. However, “the Act has been proclaimed into force in stages and is not yet fully operational,” found the Ombudsman in 2016.

This is not uncommon when it comes to the Ontario government seeking solutions to improve disability services. At least in Charles Beer’s experience.

Beer served as the Minister for Community and Social Services from the mid-1980s to the 1990s, and in 2003 he served as chief of staff to the Minister of Health and Long Term Care.

He also did the first review of the Accessibility for Ontarians with Disabilities Act, 2005.

Beer says that every government, regardless of political stripe, runs into a wall at some point around how we are going to do this. “The individual costs can be as high as a million dollars a year, if you look at some of the needs, and that becomes really difficult and it’s not going to go away.”

According to Beer, a fundamental issue is for programs like Holland Bloorview, Canada’s largest children’s rehabilitation hospital, to find appropriate care in the community once an individual ages out. He adds that the challenge has been compounded since now there are more people with developmental and physical disabilities as lifespans continue to increase.

“We haven’t necessarily caught up with the kinds of services for the older population that they require,” Beer says. As for the political solution, “there’s no silver bullet,” he says. “It’s not a political issue in the sense that this one party has the proper response and another one doesn’t. It’s challenging because it’s costly.”

Michael Coteau’s biggest regret about making transformational change was not having enough time to truly focus on the transition system. Coteau served as the Liberal Minister of Community and Social Services from February to June 2018 before Doug Ford’s PC government took power and Lisa McLeod took over his role (McLeod was replaced in June, 2019, by Merrilee Fullerton, who is a family physician).

“There was always a very clear message I got from parents about their children and the community, but also from the school board trustee, and in government that the transition was always difficult.” Coteau says that because there is a collapse of services when children transition into the adult system, he put in the universal $5,000 Passport System to “make sure that people were at least getting something.”

The system may be in dire need of an overhaul, but there is not much sign of change on the horizon. When asked for comment about how Minister of Children, Community, and Social Services Lisa McLeod hopes to better the system for those transitioning into the adult sector, the Ministry responded by detailing services already in place.

“Adults with a developmental disability, including youth turning 18 and transitioning to adult services, are eligible for a minimum amount of direct funding through the Passport program once they are confirmed eligible for adult developmental services through their local Developmental Services Ontario office,” reads part of an email response from the Ministry.

Coteau isn’t optimistic.

“I have no faith in the Doug Ford government when it comes to building a better system to accommodate people with any specific type of disability,” Coteau says.

He concedes that he doesn’t believe people on the other side don’t care, but rather that they are locked into ideology and believe cuts based on a percentage are necessary. He doesn’t agree. “For the next three years, the only choice is to work with the government and the best way to do that is to educate MPPs and decision makers on some of the challenges and once you get buy in it’s then working with them to figure out solutions.”

However, while Coteau focused much of his political career on this, he says that it is not, and cannot be, entirely a political issue.

“It seems like in the system these days, change is more based on pressure than best practices and science and data,” Coteau says. “There needs to be a stronger push in Ontario from its citizens in regards to the way in which people interact and push for social change.” Coteau says that while the blame can in part be placed on the politicians, he calls on citizens to be more engaged and hold people in office accountable. “There are a lot of people who have just given up in the system.”

While there is seemingly no cohesive solution in sight, Beer is definitive on what not to keep doing.

“The transitional issue has become so important that we can’t just do it on an ad hoc basis,” Beer says. “There really needs to be a focused…study to say ‘Okay, how can we put up better supports in place for those going through the transition and then continuing to try to lead as normal a life as they can?’”

His suggestion: appoint a leader or form a panel of people with extensive experience in the field to look at the challenges around transition for young adults and make recommendations.

Krista Carr wholeheartedly agrees. Carr, Executive Vice-President of the Canadian Association for Community Living, says that change should start with the people through an approach that focuses on lived experiences as opposed to the services and systems. “We create these systems and these eligibility criteria with all these boxes, and then we have to try to make people fit and if they don’t fit, they get nothing.”

Carr uses the Alberta system as an example, which she says is “very robust and very inclusive” for families and children with autism, and other disabilities. However, when they turn 19, they have to qualify for the Persons with Developmental Disabilities Program for adults. “But that is IQ tested and the children’s program isn’t.” Carr says that in order to receive services from the adults program, an individual must have an IQ below 70. However, she notes that many people with developmental disabilities often have an IQ above 70. “Then they don’t qualify for any services at all.”

I offered the small, hand-held microphone to Anita. She had just finished a long, passionate tangent about her aspirations of becoming a broadcast or radio journalist. Anita froze, stage fright kicked in. I tell her it’s okay, that we can just talk first.

“I’m obsessed with music so I figured okay, since I do listen to it a lot why not get paid for it?” Anita says, adding that because of her disability there are already limitations. “I’m just like, if you go to school and get training to work their equipment and you’re fine with your hands, so it should be easy for you.” She still believes that the only difficulty will be overcoming her fear of public speaking.

In so many ways, Anita is like any other 18-year-old, optimistic about her future, naive about the challenges she will face.

I offer her the microphone again. Anita reaches over the threshold of her wheelchair to take it. “It feels kind of weird” she laughs, but quickly takes control.

“My aunt feels like she wants to go back home because she misses her son,” she says about the person she relies on now.

Transitioning out doesn’t worry Anita. “I kind of have faith that like, I’ll end up somewhere.”

Should her aunt decide to return to the Caribbean, Anita would most likely be put in crisis placement and put into an emergency system.

That might not be the right system, says Susan Bisaillon, CEO of Safehaven. “She might get put into a long-term care facility. There is nowhere for her to go,” Bisaillon says. A long-term care facility could mean that Anita, at age 19, will be placed in a home with people north of 60. If Anita is not on a residential waitlist, she will be together with approximately 14,000 other people desperate to access these limited services.

The Select Committee of Ontario has called on the government to establish a system where individuals are assessed and served case-by-case. As of now, children aging out of the system, whether they have cognitive or physical disabilities, are lumped together, their unique needs unmet and families and communities struggling to fill the gaps.

“Rather than the current approach of forcing people to choose from a limited slate of options available through direct funding and agency-based support, we believe that every person should be entitled to an individualized life plan customized to meet their specific needs, including cultural and linguistic needs where relevant. Individualized life plans enable people to design the support model they feel provides them with the best opportunity for inclusion. The Committee notes that versions of this model have been adopted in other jurisdictions, including British Columbia and Britain.” – Select Committee on Developmental Services, Final Report, 2014.

Bisaillon says that the need is dire. “There are waitlists of over 14,000 people. There is no solid sort of place where people can go for respite and residential care, especially if you have medical issues.”

With a lack of resources and services, and no structured government plan, individuals and organizations in communities have taken it upon themselves to fill the gaps.

Safehaven is paving the way for transitional respite without additional funding. Despite not receiving more funding from the ministry, but through donations, they are looking for property to expand their respite services with the hopes of adding 80 to 100 beds.

Bisaillon says that this step is transformational because it’s the only transitional program for young individuals. “Nobody has thought that the need was there. A lot of these kids when they aged out, I don’t know where people thought they were going to go, but there was nothing, period.”

Bisaillon says that during a recent Webinar about Safehaven’s plans to build more respite centres, organizers had to cut off questions from flowing because people were so fascinated that respite could be done in an urban community.

“It doesn’t exist,” she says, “It’s going to transform people’s lives and it’s going to transform a system that doesn’t exist.”