Information/Findings for August 16th, 2017 Workshop

This work was funded by a grant from the Ontario Trillium Foundation

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CONTEXTIn November 2016, Kathryn Everest Consulting was hired by the York Region Autism Spectrum Disorders Partnership (YASDP) to conduct a series of qualitative interviews to understand the challenges facing families, individuals with ASD and professionals in York Region (YR) related to serving adults with ASD. At the same time, the Partnership engaged Dr. Priscilla Burnham Riosa of Brock University to conduct a quantitative survey of YR families, individuals with ASD and professions about what they found important, and how easy/difficult is was to obtain important services, and the barriers to obtaining these services. In the findings, the qualitative content is referred to as the “interviews”. The quantitative results are referred to as ‘our survey’. Other research is also referenced where appropriate.

ContentsContext............................................................................................................................................................................ 2

Key Findings.................................................................................................................................................................... 3

A. Housing and Residential................................................................................................................................5

B. Meaningful Day and Employment Options....................................................................................................8

C. Transition from School to Life......................................................................................................................12

D. Crisis Prevention and Response.................................................................................................................16

E. Waiting Lists and Lack of Funds..................................................................................................................18

F. Other Adult Issues.......................................................................................................................................19

Health Care............................................................................................................................................................19

Mental Health.........................................................................................................................................................20

Community Building / Social Relationships............................................................................................................22

Life-Long Learning/Post-Secondary.......................................................................................................................23

Quality of Life.........................................................................................................................................................24

Aging...................................................................................................................................................................... 25

What worked?............................................................................................................................................................... 25

Innovation mattered...............................................................................................................................................25

Funding/resources mattered..................................................................................................................................26

Vocation mattered..................................................................................................................................................26

Strong families mattered........................................................................................................................................26

Quality professionals mattered...............................................................................................................................26

Trust and Relationships mattered..........................................................................................................................26

Partners:........................................................................................................................................................................ 28

Regional................................................................................................................................................................. 28

Provincial................................................................................................................................................................28

Federal:.................................................................................................................................................................. 30

Programs mentioned in interviews.........................................................................................................................31

References.................................................................................................................................................................... 32

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KEY FINDINGSMany issues were already known to the Partnership prior to this consultation, including;

A. Housing and ResidentialB. Meaningful Day and Employment OptionsC. Transition to Adult Living SupportsD. Crisis Prevention and ResponseE. Waiting Lists / Lack of Funding

These are not isolated issues, but rather are inter-related (as illustrated in below). These interrelationships are explained with orange notations (e.g. ) that map to Figure 1.

Two key issues were at the heart of the problem:

The underlying model of support is limited in the options it provides. The underlying model requires a level of funding that isn’t being provided. Funding increases have not kept

up with demand.

The model itself doesn’t empower people to make enough choice (especially considering the significance of these decisions such as where a person lives, with whom, what the person will do all day long), or to personalize the support to meet their unique needs. While every agency/organization interviewed understands the need for person-centered planning, few had the resources to fully implement it. In some cases, people were on waiting lists for services that they didn’t really want because it was the only option available and “better than nothing”.

The lack of options and funding result in difficult in planning transition from school to life. Limited options led to plans that some felt weren’t compelling, resulting in difficulty dealing with the topic. The program specifics (e.g. “a day program” versus knowing the specific program that had space and a funded spot) were often not known unless the family could fund it privately. Passport funding was rarely available or known during transition planning. Despite transition planning being a mandated process, the components to make it truly meaningful were rarely available. However, families that could privately fund transition planning with specialized resources were having good success.

The result of people on extremely long waiting lists, or in situations that were not tolerable for them but had no other options, placed more demands on crisis services. Crisis is costly. Not just financially, but individuals and families have been deeply scarred by these events - many which could have been prevented. In addition, families who do not go into crisis believe this makes them not a priority (as if not being in crisis is the same as doing well).

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Figure 1: Initial issues and their key Inter-relationships. The numbers showing the relationship between these factors are described below

A. Housing and Residential“Providing housing is not the same as creating a home”: (Developmental Services Housing Forum, 2017)

In our consultation, over 75% of respondents were living with their family in the family home. Of these respondents, about a third would have preferred a different setting (the other two-thirds were not looking for housing immediately). When significant behaviours or safety of other family members wasn’t a daily issue, families in good health with children under 30 years old did not prioritize housing as their main issue. However, significant behaviours or other family stressors quickly took housing to the top of the list. Everyone recognized that “eventually”, caregiver aging and poor health would make housing a priority, but many had enough on their plate with other issues.

84.7% of the caregiver surveyed with adult children with ASD over 18 years of age identified housing and residential options as an important issue (15% responded ‘moderately important’, 15.3% responded ‘very important’ 56.5% responded ‘extremely important’). Of these, 21.1% responded that housing/residential options were ‘moderately difficult’ to obtain. 67.6% indicated that it was ‘very difficult’ to obtain.

Adults consulted living independently still spent time on a regular basis in the family home (weekend and/or holidays). Families typically lived close by and still helped with issues such as paying bills, non-routine tasks, and problem solving.

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A larger-scale study of Ontario adults with ASD (n=480) of which 50% were “higher functioning” found that 60% were living in the family home. This same study also identified that 75% of adults 20 years and over had an annual income of less than $30,000. The largest source of income for 58% of people was ODSP. Despite this study having a large percentage of higher functioning adults, only 14% had employment income as their primary source of income. (Stoddart, et al., 2013)

In our survey, self-advocates (n=7), 85.5% identified housing/residential options as important (42.9% as ‘very important’ and another 42.9% as ‘extremely important’.) Professionals rated it as important as well (2.6% as ‘a little important’, 15.1% as ‘moderately important’, 30.9% as ‘very important’ and 47.4% as ‘extremely important’). 22% of professionals felt housing was ‘moderately difficult’ to obtain. 77.5% felt it was ‘very difficult’ to obtain.

In the National Needs Assessment conducted by CASDA, adults (n=676) showed that 80% reported living in the family home, 7.6% in residential care, 6.8% in their own home, 1.3% in a shared arrangement, 4.3% in “other”. 14% indicating that they have received housing/residential support at one time. (Weiss, Whelan, McMorris,, & Carroll,, 2014)

Issues such as: o Lack of appealing options;o Lack of increases in base funding for agencies to meet the growing demand;o Scarce affordable housing;o Insufficient ODSP funding (and other non-DSO related funding) to cover the true costs of

accommodations or residential support in YR(YR);

have all contributed to difficulty finding housing and supported residential options. Too many adults with ASD still live in their family’s home - despite wanting a home of their own, or despite the challenges to the family of caring for their adult child. Not knowing when or if suitable housing or residential programs will be available is causing stress/uncertainty to families and their adult children. While uncertainty is difficult for anyone, it is especially difficult for individuals with ASD.

Transition plans do not prepare or equip parents and/or individuals to learn about residential considerations and instead focus mainly on either the school-to-work or school-to-day-program transition. Most families believe they are solely responsible for creating options beyond what is offered by the DSO (which was thought to be group homes). Many families do not have the knowledge of different options and how to implement them (e.g. legal, financial, how choices affect eligibility for other programs, etc.). Several parents expressed that someday, they convert their home into a group home – not because they are excited about this possibility, but to give them control and ensure their child will have a place to live.

Only families that engaged a private professional facilitator had more comprehensive transition plans that included housing/residential support.

Many families were very uncomfortable with the options – the default being a group home. Group homes were rarely the preferred option but the only one with which families was familiar. Semi-independent living was often thought to be only possible for “very high functioning” adults, and rarely discussed as an option. Concerns related to group homes included: staff (training, quality, and ratios), lack of autonomy for their adult child, and potential issues with housemates, selecting the program (inability to have wider choice, and “be the customer”, no portability of funding) and lack of meaningful community integration.

There is a lot of work being done to expand the number of options and improve the economics and the choices available for families – however most of the families interviewed were not aware of this work, or if they were, thought it was a complicated topic. Much more assistance was required to make this topic clear

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and accessible. Only one family was well-versed and positive about this topic. There were some families (one in particular) who were very focused on learning new ways to provide housing and residential support to their children. In a specific instance, one family member spends a significant amount of time learning from other families, spending time on task forces and committees, running events and distribution lists, heavily networking the community as well as self-funding some solutions. While this was very inspirational, it seemed difficult to replicate.

Prior to the introduction of the DSO, families could develop relationships with organizations and select the agency they could trust with their family member. The organization had a history with their family member and could help educate them about different options. Without this trust and context, it is unimaginable for some families to think about their adult child living in a program managed by people they did not know for a “system” they don’t trust. The concerns about program quality, lack of resources, and ability to provide the right level of care was strong.

As adults with ASD are over-represented in the high/complex needs group in YR, they are often assessed as “not a fit” for programs with availability. As a result, a person with ASD can wait at the top of the waiting list for a long time. It is possible that planning for these individuals requires a different approach than waiting for the appropriate placement, with more emphasis on developing adequate number of placements for higher needs individuals.

Not being comfortable at home for an adult with ASD (either because they’ve yet to find a home of their own, or they’re unhappy in their placement) can lead to difficult behaviour. Even when the placement is identified as the issue for the behaviour, moving is often not a short term option. The only option is to manage the “behaviour” (which may not so much behaviour as it is an adult trying to communicate that their situation isn’t tolerable). The inability to address the root problem causes difficulty for everyone involved.

There were some positive stories. Families who could self-fund homes/condos for their adult children were typically satisfied. Two residents of Reena’s Community Residence were interviewed and provided a tour of their apartments, and were clearly proud of their home and independence. Those with family members in group homes had very mixed reviews. Those who were not happy felt there were no other options. Challenges with staff turnover and the lack of portability of their funding made them feel vulnerable about the future. Many families of adult children in group homes underscored the need to constantly be on top of the program, and that they needed to be life-long advocates.

“It never ends” -YR Parent of an adult who has been living in a group home for over 32 years talking about the need to constantly advocate

B. Meaningful Day and Employment Options

“We want him to participate in life – not a program. People, not therapists.” Parent

The adults consulted spend their days as depicted in Figure 2: How Adults in Consultation Spend Their Day):

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28% of the adults in our consultation were engaged in some paid work (majority were part-time).

o Those working fewer than 8 hours per week typically felt “under-employed” both in terms of amount of work, and quality of work.

o Between 20 - 35 hour/week seemed to provide the right balance and needed “down time”.

o 85% of CASDA’s employed self-advocates worked part-time (Weiss, Whelan, McMorris,, & Carroll,, 2014)

o 24% had a weekly schedule of curated activities (each activity lasting a few hours or less) referred to in the graph as “cobbled”. Full-time caregivers typically oversaw coordination and transportation to implement the schedule.

o 28% were waiting for a program or unemployed, or had recently been demitted from a program/job and looking for other opportunities.

o 4% had a worker-based program as a preferred solution (1:1 time with a specific worker who coordinated outings and activities).

o 3% were in a full-time day program, 3% were in post-secondary education, and 10% were in secondary school.

In general, the unhappiest participants were the ones who were “between” programs/jobs (28%); those in school and worried about what’s next (13%), as well as a portion of those in the part-time work category who were under-employed (amount/quality of work).

Most adults consulted still relied on their families for some financial support.

In our survey, caregivers of people with ASD who were 18 years old or over, identified employment or adult day programs as their more important issue (17,8% ‘very important’, and 68.9% as ‘extremely important’). 32.4% felt it was ‘moderately difficult’ to obtain. 58.8% thought it was ‘extremely difficult’ to obtain.

In our survey, self-advocates identified this as their primary issue with 71.4% rating employment and day program as ‘extremely important’.

In Redpath’s study, 15.2% reported no meaningful or structured activities outside the home. Examples of daily activities provided included; stays home with live-in caregiver, listens to music, watches TV, on his computer, sleeps. (Stoddart, et al., 2013)

When asked about their degree of satisfaction with their day, only 14.8% indicated they were very satisfied. 40% were satisfied, 29.6% were neutral/undecided, 9.9% unsatisfied, and 5% very unsatisfied. (54.8% positive / 45.5% negative) (Stoddart, et al., 2013)

60% of individuals responding on behalf of adults in CASDA’s National Needs Assessment found Employment or Day Programs the number one issue. Employment programs were also the highest rated service gap at 64%. Self-advocates rated employment programs as the second most important issue (41%) just behind mental health treatment (45%). However, employment was the issue self-advocates most frequently discussed in the comments. (Weiss, Whelan, McMorris,, & Carroll,, 2014)

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24%

28%

3%

28%

3%3%

10%Cobbled

PT Work

Worker

"Between"

Day Programs

Post Sec.

School

Figure 2: How Adults in Consultation Spend Their Day

Everyone needs involvement in meaningful activities (a vocation) that help provide self-esteem and purpose in the context of their community. A vocation can be paid employment in one’s chosen field, a volunteer position that provides satisfaction, or a social program where one spends their days devoted to chosen activities and learning opportunities with others, or combination of these. Vocation/work is essential to our lives. Barry Schwartz, psychologist and professor, his book Why We Work writes that everyone needs a vocation which is challenging, engaging, stimulating, meaningful, and if we're lucky, important.

“Satisfied people do their work because they feel that they are in charge. Their work day offers them a measure of autonomy and discretion. And they use that autonomy and discretion to achieve a level of mastery or expertise. They learn new things, developing both as workers and as people.

It’s an opportunity for social engagement. They do many of their tasks as part of teams, and even when they’re working alone, there are plenty of opportunities for social interaction during work’s quiet moments.

Finally, these people are satisfied with their work because they find what they do meaningful. Potentially, their work makes a difference to the world. It makes other people’s lives better. And it may even make other people’s lives better in ways that are significant.” (Schwartz, 2015)

What makes a meaningful vocation is personal, but its importance in enhancing quality of life for adults with ASD is proven by the evidence. Dr. Mailick and her University of Wisconsin colleagues demonstrated that individuals with ASD who work had less challenging behaviours than those not working. While it is easy to assume that less challenging behaviours resulted in the ability to work, the data showed otherwise. Individuals who earlier showed behaviours had less behaviours because of work. (Mailick, 2014)

The specific challenge in ASD - communication, behaviour and social –are critical in the workplace and in group activities, making it especially difficult for adults with ASD to find and keep a job, or “fit” into programs designed for individuals with other intellectual and developmental disabilities. Patricia Howlin confirms that adults with ASD have lower rates of social inclusion and employment than those with Intellectual Disability or other developmental disorders. (Howlin, 2016). While specific rates of Canadian unemployment by disability are not available, Statistics Canada recognizes the challenges of a severe disability is compounded by a developmental or mental health condition. With over half the ASD population reporting mental health issues and often referred to as ‘complex’, existing systems appear not to favour adults on the spectrum.

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The employment rate of Canadians aged 25 to 64 with disabilities was 49% in 2011, compared with 79% for Canadians without a disability. Among those with a 'very severe' disability, the employment rate was 26%. […]

Even when severity and other factors were taken into account, employment outcomes were less positive for those whose disability was mental or psychological (developmental or learning disorder; memory problem; or emotional, psychological or mental health condition). Among these, the predicted probability of employment was 10 points lower than those whose disability did not qualify as mental or psychological. (Statistics Canada, 2014)

Many individuals with ASD interviewed indicated that they have had trouble keeping work. Parents and professionals interviewed (especially those in both school boards) also expressed frustration that placements often didn’t “hold”.

“What I have found challenging sometimes is that students will start at work, they leave high school and they start with their co-op employer, but they have a hard time holding on to the job. Six months down the road you find out that someone was doing it faster, a little bit better or maybe it is a better value for their money that they have a different individual there and so they end up not lasting. Sometimes, that's where the frustration comes from when you feel like you have gotten in the door but sometimes they just don't stay.” School Board Work Coordinator

Difficulty in sustaining work was substantiated by Statistic Canada in their 2014 report.

According to the results of a second multivariate model (with the same explanatory factors), severity remained a determining factor. Among those who were employed in 2011, a person with a very severe disability was 2.5 times more likely than a person with a mild disability to be out of employment in the following year (probabilities of 22% and 9%, respectively). (Statistics Canada, 2014)

Self-advocates mostly knew what they would like to be doing, and some were pursuing post-secondary certificates/degrees to support their vocation. However, finding work in their field of study was difficult. Many couldn’t find mentors in their field who could help them become successful, finding and funding job coaches was difficult, and finding/keeping employers willing to provide the appropriate accommodations was challenging. Once a good fit between employer and employee with ASD was found, work was cited as one of the most positive aspects of a person’s life.

When asked how people came to their jobs, employment opportunities were based on availability at “supportive employers”, typically in retail, food services or office administration rather than working in a chosen field. Some students with ASD had an issue choosing a field because limited exposure to what is available, and had few points of reference.

“He wanted to be a doctor because he was exposed to so many doctors, but he struggled in every academic area.” YR Parent

Most had some work experience in secondary school (typically retail and food services with supportive employers) which seemed to select a path. Creating new supportive employers with more diverse opportunities in more fields was considered a gap/issue in the community. Vocational assessment/counselling were never discussed as a way to capitalize on people’s strengths or consider options.

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Job coaching programs and employment supports that did not have unrealistic limitations (e.g. small numbers of days/hours/sessions) was identified as a gap as well.

� Finding the “fit” with day programs was also difficult for families, but the few that found a good fit were very satisfied. Challenges experienced included:

Cost – By far the most referenced barrier. Several interviewees said that their adult children were deemed by the program (not the DSO) to be 1:1 and therefore required an increased fee (typically about $200 per day) or were expected to provide staff in addition to the program’s fees. There were no families who were receiving enough Passport funding (if at all) to cover even half of this cost. Only one family (who received a large amount of Passport funding as their child was deemed to require 1:1) could manage on Passport funding because they used a private provider who determined that the child did not need 1:1 support. In some cases, this was in addition to pressure to help fundraise on behalf of the agency.

Location – transportation to the programs was either difficult to coordinate or made the program inaccessible. This was a challenge for working parents, or parents who did not have a car.

Hours of operation – Many programs did not provide enough hours of support which was an issue for working parents.

“Fit” –several adult adults were demitted from their programs as they needed more support than the program could provide. This may be an issue of programs not being designed for individuals with ASD - who need highly structured, small group programs which are more expensive to operate. Some indicated that while they did find a program that accepted their children, they were not completely happy with the program. When asked why they didn’t say anything to the program organizers, they responded that they were just grateful to have anything.

C. Transition from School to Life

“We're done school in June, and I've been panicking for the last four years”. – Parent talking about their current transition experience

Ontario’s Ministry of Education’s PPM 156 mandates transition planning to help students and their families with the difficulties associated with transitioning from secondary school to whatever is next for that student.

“It is expected that the implementation of the requirements set out in this memorandum will result in continuity of programs and services for students with special education needs and will support improved student achievement and well-being.” Ontario Ministry of Education PPM 156, 2013

School-to-life is a very significant transition for students with ASD (a disability partially defined by difficulties with transitions) and their families. It isn’t just the transition from their daily routine for the last 16 years, but to a new adult system. A new system with new rules, new vocabulary, new organizations and roles, and new people and relationships. Families, who have been the system navigators, are now in unfamiliar territory. Families may even be expected/assumed to have less involvement as their children become legal adults. Many reach this stage financially depleted (ABA, private therapies, specialized respite/child care) and unprepared for the costs to fund private programs because of waiting lists that prioritize based on perceived needs. Many families believe that they have been in the “system” for a long time and therefore their needs have been somewhat understood and are typically shocked to learn that the waiting lists are years long, and that there is no way to assess how long they will need to wait for any funding.

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“He was on a waitlist for residential from when he was about nine, so I was shocked and horrified when I found out before he turned 18 that he was never on a list.” YR Parent

Families in our interviews agreed that this transition period was one of their most stressful experiences. This was validated by the ASDConnectability Project, who asked Ontario caregivers (n=336) to describe their transition experience. Only 15% indicated is was ‘smooth’. 85% described it as ‘stressful’, 82% indicated that it was ‘time-consuming’, and 82% said their adult child did not get the support that they needed. In our survey, 84.4% of caregivers of individuals over 18 years old rated transition supports as either ‘very important’ at 24.4% or ‘extremely important’ at 60%. Of these, 41.4% identified transition supports as ‘moderately difficult’ to obtain and 44.2% found it ‘very difficult’. The majority of caregivers identified all aspects of transition planning to be “extremely important’, including: support from specialized transition team, support from specialized transition coordinator (single contact person), early transition planning, individualized and comprehensive transition plan, communication between pre- and post-transition professionals, post-transition follow-up, family engagement in transition planning and/or transition process, engagement of individual with ASD in transition planning and/or transition process.

92.7% of professionals also felt strongly about the importance of transition supports (teachers made up the largest group of professionals in our survey). 35.5% believed it was ‘very important’, and 57.2% ‘extremely important’. Most believe obtaining these supports were ‘moderately difficult’ (58.1%), with another 40% rating it ‘extremely difficult’. When asked if transition supports were available in YR, professionals agreed the answer was ‘somewhat’. In our interviews, professionals wanted more for students with ASD and were very frustrated. The most common refrain was “There’s nothing to transition to”. This profession captured many of the concerns in our interviews:

“There is nothing to transition to. Families are often unaware of challenges coming after school is done. Housing lists are huge. Employment supports are few and far between. Mental health challenges are really exacerbated after high school when there is nothing to transition to. Physical health challenges compound mental health and families get stuck with routine and not having anything to transition their young adult to - stuck in cycle”. YR Professional

In our consultation, at best, families felt that transition planning had generated some ‘good conversations’, but resembled more of an information package than a plan.

These challenges are not unique to YR. School boards in general are struggling to develop strong transition plans. A 2012 Ontario Ministry of Education IEP audit rated only 54% of transition plans as either satisfactory or proficient (compared to 23% 5 years earlier). While this indicates progress, the school board continues to be accountable for a process with significant unknown variables (funding, waitlists), and often without the resources to do it effectively. Therefore, families are often given the pieces and are responsible for putting the puzzle together themselves.

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Figure 3: Change in School Boards at Satisfactory or Proficient Level by Key Element

This IEP audit only evaluates whether transition plan makes sense “on paper”. The evaluation would not have been able to assess whether placements or funding were available.

The transition process for both the Public and Catholic School Boards were described by families in a similar fashion. Families were provided information on how to apply for funding, information about day programs or employment programs. Some families attended ‘information nights’ hosted by the Boards with funders and post-secondary programs, or other community agencies, which was described as helpful. The challenge was that waitlists for funded spots was never discussed or acknowledged and families didn’t receive any guidance on what to do in the likely event that funding wouldn’t be available in the short term and that many of these programs were only available if families could fund it themselves.

Most parents found the transition planning information helpful, but no one agreed it was a “plan”. The meetings were often facilitated by a specialist who was new to the student team, and the discussion were often disconnected from the school program. The school boards acknowledged that many families need more support than they can provide.

“I would say, they're a lot of families who need more support than what I can offer. They really need someone like a case manager, but case managers are hard to come by it seems. Families really need someone to take them by the hand, take them to the day programs. Show them what is out there. Unfortunately, we have a little bit of a gap there, where families feel a bit lost after they leave the meeting with me.” School board transition coordinator

Only one family in our interviews reported that it was a smooth transition. In this case, the student with ASD began having progressively difficult behaviours at around 17 years of age. YSSN was informed, and the family worked with the DSO and provided assessments as early as possible. When this individual completed high school at 21, Passport funding was immediately available. Because the person with ASD was deemed to be higher needs by DSO (based on her behaviour years earlier) and not the service provider (based on her current behaviour), the family was able to find a private program, engaged Mobility Plus for transportation, and still have a small amount left over for respite.

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The more common story however was that self-directed or direct service funding, unless grandfathered from SSAH, was not available, and most families were unable to pay ‘out-of-pocket’. Almost all families were receiving ODSP (on average $830 per month) and a few were receiving some type of flex or crisis funding. Programs were costing between $100 – $200 per day, depending on the needs of the individual (excluding transportation if required). Transition plans focused on applying for and getting funding with no “plan B” (if funding wasn’t available). Families then “cobbled” programs (Monday – spend a couple of hours with Aunt Susan, Tuesday – cooking class, Wednesday – special Olympics, Thursday, volunteering with a worker at …) which rarely were all-day programs but rather a few hours here and there so that the person was not at home all day. Some families were more successful at creating and supporting these programming (as they required a lot of coordination and transportation). Some families could only manage a few programmed hours per week.

Work experience as part of the curriculum for student with ASD in some cases resulted in an employment after graduation. Unfortunately, when challenges arose, the school was no longer there to help, and most jobs didn’t last. Ongoing employment support was never planned/available, and inevitably, when challenges or management changes occurred, the individual with ASD was not able to adapt or advocate for themselves.

The best outcomes (where the parents felt comfortable that they had an executable plan) was when the family hired a professional facilitator (PF) (note: all successful stories referenced the same PF. It is difficult to know whether this particular PF is indicative of all facilitator experiences). These plans cost $2,500 (covered by Passport, if available) which was cost-prohibitive to some families (creating inequities in the system). It did however indicate that successful transitions were possible with the right support and resources.

“We hired [PF] and I'm thinking what [PF’s] doing I believe is what the Board should be doing because she brought everything together. She gave us documents and we had a team come together, and identified his strengths and things that we need to focus on for him to become more independent. […In the Board’s plan] there was no connection to his school program. Once we brought [PF] in I started feeling a lot better that’s ok I have somebody now who's interested in what's going to happen after school is done.” Parent in the translation process

The biggest difference between the approach of the professional facilitator and the Board (beside the amount of time allocated to developing the plan) was how ‘person-centered-planning’ was implemented. School boards did their best to implement transition plans in a person-centered way. This usually involved understanding the needs of the person, and mapping these needs to known resources in the community (with focus on resources available to the disability community). The transition teams’ knowledge of available resources limited the plan. The professional facilitator on the other hand, had a much broader view and knowledge of community resources. But especially effective was if a resource identified didn’t exist, efforts were made to create the resource or meet its need in some creative way. This way, the plan was truly person-centric rather than ‘as close as we can get with the resources available’.

The reality is that when there was nothing to transition to, new habits and routines were established that involved more solitude and less community integration. Families are unable to develop the programming their adult children need (employment support, recreational programs, social programs, etc.). Parents describe their activities as “watching YouTube”, “sleeping”, “in his room alone” for a good part of their day.

When a good transition plan is not developed, then mental health issues, which often become significant in adolescence, are then exacerbated. Isolation, family stress, lack of consistency (people doing the best they can to get through the week), lack of vocation / meaning / purpose with focus instead just having supervision

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and meeting basic needs are fodder for anxiety and depression. The bar gets lower; the demands get more basic. Families become very skeptical and lose trust in the system.

“My child is transitioning from high school to community. Is waitlisted for passport funding. Have been told they will place her in an available subsidized spot – not a program suited to her needs. Her needs are significant … When I call to inquire about potential passport funding, I have been repeatedly told the Ministry has not released funds. No other options for care provided other than “perhaps” we can access [other funds] to bathe her once a week. I feel because she doesn’t have a voice she is invisible, less than, not worthy of a decent quality of life, not given choices or treated with dignity. She is just a number on a list.” Parent in the transition process

D. Crisis Prevention and ResponseAbout one third of families interviewed had experienced at least one crisis, defined for this purpose as a time of intense difficulty, trouble, or danger. These crises fell into one of two categories: Sometimes the crisis was something unexpected (such as the sudden onset of new symptomology or unexpected illness of a caregiver), but most often it was preventable/foreseeable but resources were unavailable to circumvent the inevitable consequence (e.g. issues with current living arrangements, lack of activity leading to anxiety-induced behaviours, families who were not coping).

The National Needs Assessment also found one third of families of adults had experienced a crisis extensive enough to involve the crisis system. Survey participants were asked if they ever accessed crisis intervention/management, 13.8% of caregivers of school-ages children, 31.2% of caregivers of adults, and 28.9% of self-advocated indicated that they had. (Weiss, Whelan, McMorris,, & Carroll,, 2014). This same survey, respondents rated crisis intervention/management as ‘difficult to obtain’ as: adult caregivers – 27.1%, self-advocates – 18.7%, professionals – 43.3%.

In our YR survey, caregivers of crisis intervention/management did not score it particularly high in the overall priorities:

8.9% considered it ‘not at all important’, 17.8% considered it ‘a little important’,

15.6% considered it ‘moderately important’, 15.6% considered it ‘very important’ and

42.2% consider it ‘extremely important’. Of those that considered it extremely important 43.1% believed it was ‘moderately difficult’ to

obtain, with 47.7% believing that it was ‘very difficult’ to obtain these services.

Few families interviewed who had engaged with YR crisis system (including emergency rooms, police, 310-cope) relayed a positive story. Instead most interviews had a story about how the system didn’t work (not all aspects – just some). The stories often involved multiple parties adding complexity but not support (Children’s Aid being the most referenced in this category), or offering unrequested services because what was needed was not available (such as help with bathing – which came up in several interviews). Families could see agencies trying, and spoke well of the individuals involved, but the result was often described as piecemeal or temporary. There sentiment was summarized well by the following quotes from YR professionals:

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“Unfortunately we're in a climate right now where urgent response is a big issue. So families are, sometimes I feel being forced to claim their kids homeless because they can't manage them any longer in their home, and these are adult children. So I feel everything happen too late. I think we need to look more at prevention as opposed to a reaction. So why are we waiting ‘till families completely break down, they're out there at their bottom. Can we set up a system differently where we provide more support and respite up front and more support before they hit that point and then they have to, I can't imagine having to leave my child at the hospital because I can't manage his behaviour any longer and it’s really sad. And then, your planning is occurring when you're in crisis state versus thoughtful planning.” YR Professional

“Even when the person hits their crisis and those supports are put in place to access respite, even on the most basic level, or number of hours - fairly minimal hours in comparison to some of the other folks are getting - once that's in place, it is constant battle to make sure it stays in place as a preventative. We are trying to communicate if you just go back to when the supports were not there, you’re back in crisis. If you maintain it until maybe a residential placement is found or a day program is found somewhere else, then you're keeping that person stable with the support because they fought so hard to get in the first place.” YR Professional

Families felt the process for applying for funding was difficult, especially in the midst of challenges. The need for business cases, financial statements and budgets, for time-limited funding that may or may not address the length of the crisis period, created a feeling of exhaustion, anxiety and despair.

‘To access […] fund, I had to create this business plan/proposal but for only for 90 days. I have to wait until the 90 days is up and the funds are depleted before we go ahead with the next application or business plan for the next 90 days. So each cycle, I have to wait and see if we’re approved.’ YR Parent

“Every month they want me to do the math of how much money we need, how much everyone makes, and what the hours are, and then they say cut it, cut it, cut it, cut it, and it doesn't even come close to what he needs” – YR Parent

“Look at these forms and the detail they want! It took me all day to fill in a form for $900”. YR Parent

Often, agencies / support organizations are put into a position of trying to make a placement (residential, day program, etc.) work where the person with ASD is unhappy, expressed by difficult behaviours. Patricia Howlin research on outcomes for adults with ASD states the best way to help the individual is to change their environment (Howlin, 2016). With few options and long wait lists of existing options, this is usually impossible or at best, very difficult. Lack of case managers in the system pushes these situations into the crisis system, where there are limited options to address the root cause.

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The crisis system is being used in ways for which it’s not intended. It inadvertently has become the de facto way to assess and prioritize a person’s needs, and signal to the rest of the community that if you aren’t in crisis, you’re not a priority.

E. Waiting Lists and Lack of FundsWaiting lists and lack of funds are simply the result of a system that is underfunded for the method/number of people it needs to serve. Unless more funds become available, or the model of service changes, this will be an ongoing problem. The move towards self-directed funding is seen by parents in a positive light, however larger initiatives such as housing and other programs that need infrastructure, will struggle if they need to predominately lean on family/individual self-directed funds. Agencies are often supporting individuals despite the funding they receive, and often find to add additional resources (often through private fundraising) to make it work.

“Profiles presented for consideration sometimes have 1/10th or less of the funding that would be needed to provide necessary supports.” YR Professional

While providing funding directly to families or allowing families to control funding is very positive, it isn’t the complete answer.

Our interviews also surfaced many additional concerns, encapsulated below under “other adult issues”.

F. Other Adult IssuesHealth Care

In our survey, 66% of caregivers of adults identified medical service/care for adults as important (24.4% ‘very important’, 45.5% ‘extremely important’). For those who indicated it was ‘extremely important’, 34.4% indicated that it was ‘moderately difficult to obtain’, and 40.6% deemed it was ‘very difficult to obtain’. Professionals agrees with 39.1% viewing medical care as ‘very important’ and 45.7% as ‘extremely important’.

Health care was a significant challenge brought up in interviews.

There is not a lot of community psychiatrist who or even GP's who see patients, sometimes with intellectual disabilities, and definitely with challenging behaviours – York ASD Professional

We just lost our Disability Tax Credit because the doctor didn’t fill in the form properly – YR Parent

It took over 6 months to find a dentist that would see him – York ASD Professional

The challenges included:

Difficulty finding primary care physicians, dentists, or specialists (both those with specialties related to autism such as neurologist, psychiatrist as well as those not typically associated with autism, such as

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endocrinologists or gastroenterologists) that would accept patients with autism and/or patients using ODSP supports;

Difficulty finding doctors who had experience with ASD;

Difficulty accessing mental health services with ASD;

Difficulty using urgent care (such as emergency rooms);

Difficulty in getting forms filled in correctly, resulting in loss of service.

This was resulting in an inability to get good preventative care (including thorough and routine physical examinations, routine tests, such as blood work), as well as making acute care situations stressful and challenging.

A recent study published in BMJOpen (Lunsky, et al., 2017) of 284 Ontario teens and adults with autism has found that almost one in four (22.2 per cent) had been to an emergency department at least once in the past year. There were three main predictors of future emergency department visits:

Having had an emergency visit in the year prior to the study period

Elevated family distress at the start of the study period

Two or more negative life events just before the start of the study period

As these main predictors tell us, many are not true emergencies but typically crises resulting from acute stress, negative life events and few other places to turn.

Other factors like age, gender and autism severity did not predict future emergency visits, highlighting the need to consider how to support ALL teens and adults with ASD across the spectrum.

The study authors suggest that the rate of emergency department visits could be brought down if there were better supports for people with autism in the at-risk groups and better training of emergency department staff to deal with the complex challenges people with autism present. (Lunsky, et al., 2017)

Another interesting observation was the overlap and inter-relationship between what was perceived as a psychiatric emergency versus a medical emergency.

“The study looked at both medical and psychiatric emergencies and found that different issues predicted each type of emergency. According to the authors there can sometimes be overlap between the two.

‘It may seem like a psychiatric emergency where the patient is getting very angry and acting out, but there could be an underlying medical condition that is not being treated,’ says Dr. Lunsky. ‘Or it could start out as a medical emergency, but the hospital process is so stressful it becomes a psychiatric emergency. Sometimes it's not entirely clear whether it's one or the other.’"

Sadly, according to a recent large registry Swedish study, the risk of premature death in autism is 2.5 times higher than the rest of the population. The mean age of death in their study was 54 compared to 70 years old in the general population. This was even lower (40 years old) for those with intellectual disability.

The three main causes of death in order of occurrences, were epilepsy, suicide, and heart disease/cancer.

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Mental Health

“I’m worried about living on my own because I get these depressions.” YR Adult with ASD

Issues related to mental health were prevalent in our interviews. It is difficult to get an accurate number of individuals with comorbid psychiatric disorders and autism because of overlapping symptoms, and difficulty in assessing people with ASD - estimates range widely from 11% - 84% (Stoddart, et al., 2013), and typically are cited around 50%. The most common are anxiety disorders, depression/other mood disorders, both at much higher rates much higher than the general population. The Redpath survey’s question - “Have you ever been accurately diagnosed by a professional with the following?” (n=480) resulted in the following.

Figure 4: Redpath Survey Response to "Have you ever been accurately diagnosed by a professional with the following?" (n=480)

Many had multiple diagnoses. 30.4% had no other diagnosis than ASD. 21% had an additional mental health/neurodevelopmental/intellectual disability. 23.1% had two additional diagnoses. 10.6% had three, 8.5% had four, and 6.3% had five or more. In addition to these results, another 31% felt they had an undiagnosed mental health disorder. (Stoddart, et al., 2013)

Despite the incidents being so high, there are few professional and fewer services for individuals with ASD to receive mental health treatment. Mental health treatment for individuals with autism was deemed as ‘very important’ by 24.4% and ‘extremely important’ by 57.8%. Despite being extremely important to over half the respondents, 41.3% found it ‘moderately difficult’ to obtain services, and another 48.9% found it ‘extremely difficult’. When asked how mental health treatment was paid for, 34.4% said it was “private, out-of-pocket” expense, 11.1% was funded by government, and another 11.1% was a combination of private and government funded. 43.3% were not receiving services

Many caregivers interviewed validated that their adult children were not receiving service because either professionals were not available, or those that were available were unaffordable. While the question was not specific to mental health services, the results reflected our interview findings. The survey revealed that a small percentage (6%) were able to comfortably cover the costs of services. 52% were funding this, but with a struggle. 42% were not getting services because they could not afford them. The interviews revealed that mental health was one of those casualties of funding that only became prioritized in a crisis or when the

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condition become completely unmanageable. The top three barrier to service in our survey 1) Waitlist/no resources, 2) Cannot afford services, and 3) Lack of trained ASD professionals, which was also the findings of our interviews.

Our self-advocate sample was low (n=7) however 57.1% rated mental health services as ‘extremely important’.

Professionals rated mental health services as the third most important issue overall (below only early detection and behaviour management services). 25.7% rated it as ‘very important’ with 71.1% rating it ‘extremely important’. 38.3% believed mental health was ‘moderately difficult’ to obtain, and 58.9 thought it ‘extremely difficult’ to obtain.

There’s not enough supports put in place for students with ASD and mental health issues. YR Professional

The National Need Survey’s self-advocates (71% of whom were diagnosed with Asperger’s Syndrome) identified mental health treatment as their number one issue (45% for all Canada – 55% for Ontario respondents) and the hardest service to obtain (40%). (Weiss, Whelan, McMorris,, & Carroll,, 2014)

Community Building / Social Relationships

This [issues facing adults with ASD] is not a [parent] and [professional] question. This is everything from employers to the TTC. People are talking now about free bus passes - yes we need free transportation. Transportation is a massive cost centre. How do we get so that the transportation system is better for people with disabilities? How do we get the employers to be much more open to people? How do we get community centres so that [adults with ASD] can join yoga go to the swimming pool and do different things? It's a whole perspective.” YR Professional

While developing programs for people with ASD is important, it sometimes fails to recognize the goal of improving community integration, with relationships and activities that extend outside the disability community. Community building is about making the whole community accessible, involving all aspects of the community in the solutions. There were many efforts at community building, but they were mostly at the individuals’ relationship level rather than at an organizational level. For example, a specific person may have a relationship with a specific manager at an employer. When the manager changes or the person with the tie to the autism community moved to another role, the employment opportunity disappears. Developing and maintaining these relationships between the autism community and the wider community (employers, recreational programs, transportation, learning programs, etc.) is a significant effort, but critical for adults with autism to be full citizens.

Programs for people with ASD are also not able to serve everyone who needs it. In our interviews, several individuals did not use the programs targeted at the ‘autism community’. Some adults interviewed did not want to interact with the autism community and did not see the commonality they share with more disabled individuals. Others felt they were too mature to participate in "programs". Another group found it hard to "fit in" to the autism community because of other barriers (such as language barriers including ASL), or other challenges presented by additional disabilities (blindness, mobility, eating disorders). These individuals still had the need for connection and friendships but had limited opportunities to meet people other than at ‘autism community’ events. Several self-advocates thought that being in York Region (and especially in

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more rural areas) made it more challenging to meet people, talked about perhaps moving to Toronto, but worried about being too far from family.

“She’s doing really well.  I just wish she had more friends” YR Parent

As noted in the Redpath survey (Stoddart, et al., 2013), “Struggles with social interaction are among the diagnostic criteria for ASDs”, so it is no surprise that it is a challenge for many adults on the spectrum. Some of their findings included:

81.1% had difficulties taking part in social activities 73.7% did not find it easy to make friends 60.9% said they don’t have as many friends as they would like 59.1% found it difficult to keep friends 57.3% did not have a ‘best friend’

A large number reported infrequent social activities, with over 38% reporting one activity per month or less.

Figure 5: Frequency of Social Interaction (Stoddard, 2013)

In our York Region survey, social skills and friendship programs were rated as ‘extremely important’ of caregivers across the lifespan (70.3% of caregivers across all age groups), but continued into adulthood (rated ‘extremely important’ by 58.7% for those 18 years of age and older). With a strong connection between social connection and good mental health and quality of life, adults are indicating that they need more help in this area. In the Journal of Autism and Developmental Disorders, Orsmond et al found that:

Social participation is an indicator of life quality and overall functioning. Using data from the National Longitudinal Transition Study 2, we examined rates of participation in social activities among young adults who received special education services for autism (ASD group), compared to young adults who received special education for intellectual disability, emotional/behavioural disability, or a learning disability. Young adults with an ASD were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated. Among those with an ASD, lower conversation ability, lower functional skills, and living with a parent were predictors of less social participation. (Orsmon, Shattuck, Cooper, Sterzing, & Anderson, 2013)

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Other findings in this study, over a 12-month period, included:

Almost 40 percent of youth with ASDs never got together with friends; 50 percent never received phone calls or were invited to activities; and 28 percent were socially isolated with no social contact whatsoever.

Life-Long Learning/Post-SecondarySeveral families interviewed were in the midst of post-secondary education for their family member with ASD or had graduated in the last few years. Some of the challenges raised included:

Disability counselors and support staff who lacked knowledge of ASD. Disability counselors could be pivotal in creating a positive experience.

Accommodations did not “carry over” from high school. New assessment and paperwork were required. It was like “starting again”.

Programs, such as Seneca’s Summer Transition Program for student with learning disabilities, are not accessible to students with ASD without advocating and getting letters of support. Programs need to either be more inclusive or programs for students with ASD should be offered.

Difficulty finding work placements – lack of support to deal with issues related to interview techniques. Students on the spectrum needed more help finding an appropriate placement that would be successful, and helping them get the placement.

Parents were not included as part of the team without having to convince each team member of their importance. While self-advocacy is an important skill to develop, some students with ASD depended on family members to assist them and this should be welcomed when the student agrees that their support would be helpful.

York Catholic District School Board participated in a pilot with York University and others, to identify and address the issues. The pilot evaluated what supports would be required, developed new processes, supporting documents and checklists, beginning in Grade 10 and continuing into the first couple of years into the post-secondary experience. As its foundation was a strong partnership between the secondary and post-secondary programs. The recommendations from this pilot seem to have been accepted by the Ministry and announced as part of Access Talent Initiative (see page XX). However, no further details have been announced since, so this needs more investigation.

Ongoing, structured learning opportunities for adults with ASD were reported as limited in our interviews. The most commonly referenced were those related to”

daily living skills, healthy living/fitness, and social skills.

Some families expressed a concern about daily living skills and how life-skill school programs have made them skeptical about the curriculum and the outcome. Many life-skills classes/activities did not always focus on what families believed were high priority needs. For example, one caregiver talked about how her son would bake muffins every week for the staff room where she would have rather have them focused on learning to make a sandwich, learning to do laundry, and other more practical skills. One adult who lived independently benefited from a program by Lights Community Living Toronto on independent living where participants focused on practical skills such as budgeting, making beds, doing laundry, unclogging a toilet, which helped this person feel prepared.

Life skills training (e.g. money management, self-care, hygiene) was the second highest rated service/support of importance for caregivers of adults over 18 years old, with 62.2% considering it ‘extremely important’ and 50.8% finding it ‘very difficult’ to obtain. Many families expressed frustration that children

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were often the focus of learning and skill development. If certain skills had not been obtained by early adulthood, then it became only something taught through ‘incidental learning’.

"It is never too late to expand the mind of a person on the autism spectrum." - Temple Grandin

Quality of LifeQuality of Life is a difficult topic to summarize, but one that was often missing from the conversation in interviews. When there are challenges to the basics in life (such as shelter, safety), it is more difficult to have a conversation about happiness, fulfillment, and quality of life. However, in interviews, a common pattern was to tackle one issue at a time and there was a lot of difficulty planning and executing in a holistic way. Working to get one type of service was so overwhelming for families that they could only deal with one situation at a time.

It was also a difficult to think about the quality of life of people for whom we know were unhappy about some aspect – be it issues with loneliness, anxiety/depression, un-or under employment, uncomfortable behaviours, concerns about housemates, lack of stimulation/learning/boredom, difficultly finding others that share their interests, difficulty with community acceptance. Many of these challenges do not have simple solutions.

Quality of life is also subjective. Caregivers/professionals may want things for the adults that the adult may not want for themselves. An example was the amount of activities. What a caregiver/professional thought an individual should do in a day differed from the amount the individual wanted to do. In the interviews, self-advocates needed a lot of downtime, making all day programs and full-time work difficult for some.

But the main issue is the lack of QOL in conversations about adults with ASD, and the need to integrate this concept into measurement strategies and in goal-setting.

AgingOne topic that did not come up in interviews was the topic of aging and ASD. We did not interview anyone over the age of 45, and this was too many steps ahead from families’ consciousness. The community is already supporting aging adults with ASD and the Ontario Partnership for Aging and Developmental Disabilities is working to address these issues. However, like many of the issues related to ASD, the demand will begin to increase. Incidents of ASD are on the rise, and regardless of the cause (better detection, more awareness, larger diagnostic spectrum), the effects will begin to reach the aging and long-term care sector as well. Unfortunately, scant research in this area won’t be able to provide strong evidence-based guidance in the short term, the Partnership should consider monitoring this topic, and proactively supporting developments in this area as they arise.

WHAT WORKED?

Innovation matteredOpportunities to provide innovative thinking, such as the Housing Task Force – allowed families to submit proposals that looked at new ways of thinking about the challenges of supported housing. One family interviewed was able to take advantage of this. However, initially there was no guarantee that the funding would continue (initially introduced as a two-year project) so few families participated.

“The first group [who was provided funding] continued, so we're hoping since we're going through a lot, and doing a lot of arrangements that they're not going to say goodbye pull the

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plug and go back to where ever you were, so we're hoping. We haven't gotten word for our group but we're hoping.”–YR Parent

More opportunities to innovate through pilots should be considered.

Other innovative programs discussed included Reena’s Community Residence, the Why Wait group facilitated by Kelly Casey, and Community Living York Region South’s Marketplace.

Funding/resources matteredFamilies who self-funded programs did not experience the amount of stress of other families (all families experiences some levels of stress, but financial resources provided options). The number of families who could fund their own programs, and afford qualified support, were very few. Some families purchased property for their adult children or supplement their children’s housing and living expenses. No self-advocates were interviewed who were completely self-sufficient - where families did not continue to provide some level of financial support. Many in residential programs continued to spend weekends at the family home and some families paid out-of-pocket for weekend support.

Vocation matteredDespite needing some help from families, interviews revealed work as a huge source of satisfaction and independence for individuals on the spectrum. In most successful situations, the adult with ASD were truly part of the work environment, had multiple mentors and supporters who worked to make the person with ASD successful, and were included in all company events. Many interviewed continued to also use family as mentors to help navigate difficult work situations. Connections between the work environment and the family helped to address issues before they became complicated.

Strong families matteredThose doing well have strong connections to a healthy, loving family. Those in post-secondary education continued to rely on parents to help them advocate for needed supports and accommodations, as well as helping to navigate social situations. The attitude of the families themselves seemed to correlate with whether they could see a future for their child; whether they knew the resources were secure. Healthy families were a critical ingredient. Supporting a person with ASD requires extensive time, energy, and patience. When these resources wear thin, difficulties often ensued. Challenges such as the health, challenges with other family members, martial issues, financial issues, employment issues, etc., could push routine daily tasks into an overwhelming experience and into crisis. Keeping families strong needs to be an important consideration in building capacity in York Region.

Quality professionals matteredMany individuals and families referred to key partnerships which they had with workers/professionals that made a difference. Families felt lucky when they found professionals who were committed and seemed to “get” their family member. Staff turnover was a significant issue for families. York Region is lucky to have some great professionals, but needs to attract and retain even more.

“ I do know a lot of great people in the adult services industry and I hope they change it. ” – YR Parent

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Trust and Relationships matteredStrong relationships with between agencies, families and funders mattered. When trust was apparent, and a feeling that the agency genuinely cared for the individual, and had values that the parents could trust facilitated strong working relationships. Lack of trust and relationships, on either side (parent of ‘the system’ or vice versa) seem to breed hopelessness. Only by working together can we solve the significant issues facing adults with ASD. Many agencies believe families are keys to getting better funding and recognized the need to better work with families to address the significant issues in the adult service sector. Getting the adult families as mobilized as they are in the children’s sector is an important step. If families do not feel they are working on the same goals as service sector, this alignment will not happen and partnership won’t be possible.

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PARTNERS:

RegionalNetworks of Specialized Care: (Score – 51) Regional (Central Region)What is it: The Community Networks of Specialized Care (CNSC) are a way of linking specialized services and professionals to pool their expertise to treat and support adults who have developmental disabilities and mental health needs and/or challenging behaviours (ie. dual diagnosis) in the communities where they live. The Networks bring together people from a variety of sectors including developmental services, health, research, education, and justice in a common goal of improving the coordination, access and quality of services for these individuals who have complex needs (website)

Health Links (not scored) – 3 YR Groups based out of Southlake, Mackenzie Health, and Markham Stouffville Hospitals)Health Links were introduced as a key commitment in the Ministry of Health and Long-Term Care 2012 Action Plan for Health Care to transform the system through increasing access to integrated, quality services to Ontario’s complex patient population. Since their launch in December 2012, Health Links have made tangible gains in improving care coordination and transitions between services. To date, Health Links have played a key role in attaching patients to primary care providers, improving coordinated care for patients living with multiple complex chronic conditions; and more meaningfully, engaging patients in their own health care. In addition, they have been crucial in strengthening relationships and communication between providers.

YR Affordable and Supported Housing

ProvincialH-CARDD Health Care Access Research in Developmental Disabilities – (Score 31) - ProvincialThe H-CARDD program was developed to address disparities in health status and health care access faced by individuals with developmental disabilities in Ontario, Canada. Individuals with developmental disabilities often have complex health care needs, experience difficulty in accessing appropriate services, and tend to encounter health care providers with little knowledge of how to support them. The overall goal of the H-CARDD program is to monitor and improve the health and health care of Ontarians with developmental disabilities through engagement with researchers, policy makers, health care planners, clinicians, adults with developmental disabilities, and caregivers. (website)

Ontario Association for Supporting Individuals with Special Needs (OASIS) (Score 54)Vision: Strong, viable, accountable agencies who have the resources and professional competencies to provide quality supports and services to people with special needs.

Mission: OASIS provides leadership through sharing ideas, information and knowledge, and interacts with government and other organizations on issues affecting its members.

Ontario Association of Development Disabilities (OADD) – (Score 54)The Ontario Association on Developmental Disabilities supports professionals and students in the field of developmental disabilities through the promotion of the highest standards of research, education and practice.

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Housing Task Force (website) The Developmental Services Housing Task Force is the first ever cross-sector Task Force to tackle housing issues specifically for adults with developmental disabilities.

The task force is chaired by Ron Pruessen, who has been actively involved in advocacy and organizing work in the developmental services sector for more than 15 years.

Intentional Community Consortium (ICC) – Score 53Plan new inclusive living environments where people of varying abilities can be connected to their families, friends, neighbours and community. The province is providing funding to a group of 10 developmental services agencies known as the Intentional Community Consortium (ICC) to develop an inclusive, community-based housing strategy for adults with developmental disabilities. The ICC is guided by a vision of creating housing options in communities across Ontario while leveraging collaborative partnerships.

Access Talent: (website) – Too new to scoreOntario’s Employment Strategy for People with Disabilities - Access Talent will help broaden the scope of talent for Ontario employers and businesses, positioning them for growth in an increasingly diverse province and world. It’s a strategy built on partnerships-one that depends on the participation of people with disabilities, employers, educators and governments.

Builds upon existing initiatives: Partnership council on employment opportunities for persons with disabilities (est. 2014) - which

provided expert advice on how to promote hiring and remove barriers in the workplace Building the Workforce of Tomorrow: A Shared Responsibility (est. 2015) - to develop a strategy to help

the province's current and future workforce adapt to the demands of a technology-driven knowledge economy.

Achieving Excellence: A Renewed Vision for Education in Ontario (2014) recommends encouraging experiential learning opportunities to prepare students, including those with disabilities, for the workforce

Ontario's Comprehensive Mental Health and Addictions Strategy (2011, 2014) – Open Minds, Healthy Minds -

Collaborate with Ontario employers—from the private, non-profit, public, and broader public sectors—as partners, to collectively increase employment for people with disabilities looking for work.

This strategy challenges every Ontario employer with 20 or more employees to hire at least one more person with a disability. About 56, 000 people would get jobs, and 30% of the people with disabilities looking for work in Ontario would be able to apply their talents to our businesses and economy.

Empower leading employers to share the message that it is simple and beneficial to hire people with disabilities. Through an innovative Employers’ Partnership table, we will build a coalition of influential leaders that can help shift the business culture across the province.

Work with youth and service providers, while also leveraging the expertise of the Ontario Public Service—one of Canada’s best Diversity Employers for 10 years running.

The strategy will start with:

1. Start early – inspire and support youth and students with disabilities. Encouraging post-secondary education and future planning through enhanced career exploration at earlier

ages Piloting a person-centred case management approach in the Ontario Disability Support Program to help

more young people with disabilities identify employment goals and actions Supporting the transition to workplaces, apprenticeships, college, or university before and after graduation

from secondary school through stronger community partnerships and youth programming

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Expanding community-connected experiential learning opportunities for students in kindergarten to grade 12 and adult learners

Helping colleges and universities support students with disabilities throughout their studies, with an early focus on students with Autism Spectrum Disorders

2. Engage – support and encourage employers as champions and partners. Amplifying the voices of employers who are leading by example through a new Ontario’s new Employers’

Partnership Table. Championing and sharing best practices to help businesses break down barriers to employment for people

with disabilities Enhancing Employment Ontario supports tailored to the needs of both individuals and employers Promoting dialogue between employers through an innovative online platform that will connect businesses,

people with disabilities, and the public to share advice and lessons learned Increasing awareness and supporting compliance with the Accessible Employment Standard

3. Integrate – create seamless, person-centred employment and training services Working with stakeholders to gradually integrate employment and training services for people with

disabilities and introduce a new Supported Employment program in Employment Ontario. This new program will create high-quality, consistent services for job seekers with disabilities who require more intensive support and provide targeted services for employers

Tracking best practices and testing innovative new approaches in education and employment support for people with disabilities, as well as developing performance measures to track program impact

Improving how we serve people with disabilities through better training and new resources for staff at Employment Ontario Employment Service centres, which currently serve about 12,000 people with disabilities each year

Promoting employment in the skilled trades through enhanced apprenticeship opportunities and vocational training programs

Encouraging entrepreneurship by increasing awareness of entrepreneurship programming4. Trail blaze – establish the Ontario government as a leading employer and change agent.

Raising awareness and changing attitudes through public education and outreach targeted to employers, service providers, educators, healthcare professionals, and the general public

Extending the government’s track record in supporting employees with disabilities through an OPS-specific campaign that reinforces the government’s expectations as an employer of choice

Leveraging the OPS (Ontario Public Sector) procurement framework to encourage more ministries to contract with vendors that employ under-represented groups, including people with disabilities

Analyzing best practices within the OPS and sharing lessons learned across government and throughout the private and not-for-profit sectors

Building on the OPS’s commitment to foster a workplace culture that promotes psychological health and safety and reduces stigma by breaking down barriers and challenging stereotypes of mental health

Federal:Canadian Autism Partnership Project Mission - Accelerate systemic change at the national level by mobilizing multiple sectors to address complex issues related to Autism, using a shared leadership approach to achieve collective impact. (website)

Priorities: Canadians identified a range of pressing concerns that have been consolidated into the following five broad categories, which reflect the complex, systemic issues facing Canadians with ASD:

Early identification and early intervention; Employment; Interventions and services to optimize quality of life at all ages;

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Specialized medical care, including access to dental and mental health services; and Education, including transitions to work, post-secondary education and independent life.

Engagement with Indigenous Peoples, and Canadians in Northern and remote communities across the country, is integral to the model’s success. An effective means of engagement will require a very different and separate approach informed by these constituents.

CASDA – Canadian Autism Spectrum Disorder Alliance – Not ScoredCASDA is a coalition of organizations and individuals developing a comprehensive National ASD Framework. It is committed to ensuring the implementation of a comprehensive National ASD Strategy that addresses critical gaps in funding and policies, which are preventing individuals with ASD and their families from exercising their equal rights as Canadians.

Programs mentioned in interviewsReady, Able and Willing (CASDA Initiative?)Ready, Willing and Able (RWA) is a national initiative active in 20 communities across Canada (GTA – not YR), with a branch in all 13 provinces and territories.

Integrated Autism Consulting – Transition to Life ProgramTransition from secondary school to life is one of the most stressful times in the lives of young adults, but for individuals with Autism Spectrum Disorders (Asperger Syndrome), the event is overwhelming and anxiety provoking. Since many lack the skills and confidence to enter into post-secondary education or the workplace they often graduate from the school system to their parents’ basements. The intent of this program is to respond to the increasing needs of young adults with ASD who require specific preparation programs and direct support to ensure a successful transition experience to the world of enhanced education, employment and independence. This 12 week program offers direct teaching and individual coaching, group interactive learning/social experiences and provides a significant focus on job search preparation, getting hired and keeping a job (website)

P4P Planning Network“Who will love and protect our sons and daughters with disabilities when we no longer can?”

In 2014 Partners for Planning launched the P4P Planning Network as a response to this pressing question. Every resource is designed specifically for you – the relative or caregiver of a person with a disability. As a family formed and led organization we know that planning for a person living with a disability takes effort and intention. From relationship building to school transitions, community involvement, financial objectives and more – very little happens without planning. Families must envision, strategize and above all, take action. The Planning Network helps you navigate each step and life stage, empowering you with all the right tools and inspiration along the way. P4P connects a powerful network of professionals, organizations and agencies. With over 100 partner organizations referring families and caregivers to the Planning Network, it has become the go-to planning resource for families in Ontario.

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REFERENCESHowlin, P. (2016, August 19). Professor Patricia Howlin: Adult outcomes in autism. Retrieved from Youtube:

https://www.youtube.com/watch?v=giLIbEP_8Mw

Lunsky, Y., Weiss, J. A., Paquette-Smith, M., Durbin, A., Tint, A., Palucka, A. M., & Bradley, E. (2017, July 18). What happens when people with autism go to emergency. Retrieved from Centre for Addiction and Mental Health: http://www.camh.ca/en/hospital/about_camh/newsroom/news_releases_media_advisories_and_backgrounders/current_year/Pages/What-happens-when-people-with-autism-go-to-emergency.aspx

Mailick, M. (2014, May 16). Autism Speaks Researcher Delivers IMFAR Keynote on Adults with Autism. Retrieved from https://www.youtube.com/watch?v=A_M_-wIMbCc&t=1516s

Ontario Government. (2017, June 20). Access Talent: Ontario’s Employment Strategy for People with Disabilities. Retrieved from Ontario Government Website ontario.ca: https://www.ontario.ca/page/access-talent-ontarios-employment-strategy-people-disabilities

Orsmon, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013). Social Participation Among Young Adults with an Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 2710–2719.

Roux, A. M. (2017). National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood: Life Course Outcomes Program,. Philadelphia, PA: A.J. Drexel Autism Institute, Drexel University.

Schwartz, B. (2015). Why We Work. New York: Simon & Schuster / TED.

Statistics Canada. (2014, December 03). Study: Persons with disabilities and employment. Retrieved from Statistics Canada: http://www.statcan.gc.ca/daily-quotidien/141203/dq141203a-eng.htm

Stoddart, K., Burke, L., Muskat, B., Manett, J., Duhaime, S., . . . Bradley, E. (2013). Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared. Toronto, ON: The Redpath Centre.

Weiss, J. A., Whelan, M., M. C., & C. C. (2014). Autism in Canada: National Needs Assessment Survey for Families, Individuals with Autism Spectrum Disorder and Professionals. Canadian Autism Spectrum Disorders.