Autism Families in Crisis
October 18, 2017
Tenth Anniversary of Senate Report—Inquiry—Debate
On the Order:
Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report Pay Now or Pay Later: Autism Families in Crisis.
Hon. Dennis Glen Patterson: Honourable senators, I am pleased to respond to the clarion call of Senator Munson in introducing this inquiry into the tenth anniversary of the groundbreaking report Pay Now or Pay Later: Autism Families in Crisis to all of us to speak:
. . . in one voice in support of the autism community.
Senator Munson told us in initiating this inquiry:
If you are not directly affected, someone right next door . . is . . . .
That indeed is my experience with both family and friends. I want to share that with you today.
I have close friends whose adult son has ASD. He’s in his 30s, and his parents have been tireless in their efforts to advocate for him and provide him with the opportunities he needs to thrive. He is a bit higher on the spectrum. He is verbal but requires help and strategies for social interaction and independent living. Their experience has provided me with some insight into how families cope with children diagnosed with Autism Spectrum Disorder and helped me to identify gaps in service that I believe the federal government could help to fill.
In talking to them, I now understand that the spectrum is very broad and that each individual needs specific programs tailored to their uniqueness. Individuals may often be very gifted but also may have significant limitations. Some may lack geographical awareness. Some may be very articulate. Others may not be able to speak at all. In the last budget he tabled, my friend and colleague the Honourable Jim Flaherty dedicated $15 million, over three years, to Ready, Willing and Able, which encourages Canadian employers to hire and support youth and working-age adults with developmental disabilities, and $11.4 million, over four years, for the expansion of vocational training programs for individuals with autism.
Despite these key contributions to employment and training, there is still a great need, as I will explain, for continued support of programs that incentivize employers to embrace employees coping with ASD.
Over 80 per cent of individuals with ASD are unemployed. For many, the accommodations required to enable them to thrive in the workplace are easily made and no different than the modified-work programs that we currently offer employees across the country who are physically ill or coping with mental health struggles.
My friend’s son has taken courses in employment readiness and continues to attend weekly activities that help him to develop key skills in peer-to-peer interactions. However, the jobs that he has had are tied to government-funded programs that provide employers of Canadians with developmental disabilities with a stipend for a six-month period. Unfortunately, the jobs tend to last only as long as the funding does. I fear that this pattern is being repeated across the country and leading to many on the spectrum being underutilized.
I recognize that there is an impact on businesses because employing persons who are more limited in their capacity may impair efficiency. With that in mind, I’d respectfully suggest that targeted funding, within the overall Employment, Skills and Social Development envelope, to create incentives for long-term jobs for individuals with exceptionalities, should be a focus for this and successive governments at the federal and provincial level. Programs could include employer support, such as those resources already offered through Ready, Willing and Able. These individuals should be afforded every opportunity to pursue their dreams and to fully contribute to our society and our economy.
This may also help to lessen the prevalence of anxiety and depression experienced by many individuals with ASD.
Colleagues, the other major issue that I identified, based on my friend’s experience, pertains to housing. How do we help provide individuals with ASD with opportunities for independent living and for developing key skills required for day-to-day living? Does the Canadian housing spectrum provide enough alternative housing models for people with ASD? Safe and secure housing for individuals with ASD is integral to their success in all other aspects of their life. In this connection, I believe there are other countries — I’ve been told Denmark and Norway — that are far ahead of Canada in developing working models for housing and accommodating the varied needs of persons with roughly similar needs on the autism spectrum.
I believe the current endeavour to create a national housing strategy is the ideal opportunity to share best practices across the country so that all Canadians with similar experiences and struggles can benefit from the same programs as some in individual provinces.
In Calgary, for example, the Sinneave Family Foundation created The Ability Hub, self-described as a world-class facility, purpose built as a centre for information and for the advancement of promising practices in the field of autism.
The Ability Hub offers various programs and resources to families of, and individuals with, ASD, including employment readiness, social skills development and recreational opportunities.
John Seigner, the Ambassador and Resource Centre Manager for The Ability Hub, has worked with families to explore and develop options for independent living.
I talked to Mr. John Seigner, the housing ambassador and resource centre manager for the Ability Hub in Calgary. In developing these models, Mr. Seigner has also considered the issue of who will assume the role of guardian for these individuals once the parents pass. That’s a concern of my friends who are my age and thinking about the long term for their adult son.
One such model is the family-directed group home, which brings together a group of four or five families whose adult children have similar needs and ideally already know each other from school or day programs. These parents would then select and negotiate with the preferred support agency who would, in turn, work with the families to negotiate funding avenues with government and the private sector to create a hybrid model that gives the parents the ability to direct the set-up and operation of the home to ensure tenure and stability for their children. Eventually, the agency would be phased in as the primary operator.
The other model they’re exploring in Calgary is described as “the concierge model” that builds an apartment complex that includes an allowance for a personal support worker into the capital structure to give support based on an individual’s needs, for example, helping prepare medication, helping orient an individual on how to get to school or work, help with hygiene, assistance with grocery shopping and so forth. Each assistance plan would be individualized based on input from the parents and the funding that’s available.
That, colleagues, is perhaps the most important to emphasize. In my talks with parents of individuals with ASD, I’ve been told repeatedly that the key to successful solutions is a collaborative approach. Families and individuals with ASD must be consulted not only in identifying potential solutions but in setting the goals and priorities so that the projected outcomes are realistic and mirror the realities of the front line. We cannot simply prescribe solutions and designate funding to an issue without exploring the potential solutions with parents. They bring a perspective and a wealth of knowledge that we, as legislators, can never know unless personally affected, and governments alone can’t have that knowledge.
Calgary’s approach is promising because the solutions have been developed, I’m told, with the input of approximately 100 families who meet regularly to discuss the issue of housing.
In closing, honourable senators, I want to strongly endorse Senator Munson’s call for a national ASD strategy. The numbers are just too staggering for us to ignore.
In 1994, one in 2,000 children were diagnosed with ASD. Now it’s one in 68; 63 per cent of young adults with developmental disabilities are still living at home after the age of 29, according to the National Housing and Residential Support Survey; 84 per cent need targeted support for independent living, according to the Autism Society Alberta; 94 per cent of young adults with developmental disabilities require affordable housing, while 71 per cent have mental health issues, and only 23 per cent can afford to pay for support services.
A national strategy would also ensure that northerners are able to access important diagnostic and therapeutic services. Early childhood intervention is critical to a child’s future success. Sadly, for many in the North, the only current option is to fly or move to the South, far away from families and communities and culture, in order to access important services and departments such as developmental pediatrics, pediatric psychology, behaviour therapy, speech and language therapy, occupational therapy and physiotherapy.
So, colleagues, it’s time for us to act.