Premier’s Council Awards – Now Accepting Nominations for 2017

We are now accepting nominations for 2017.

Do you know someone whose achievements and leadership contribute to a better life for people with disabilities? If so, consider nominating them for a Premier’s Council Award. Learn more about the awards and access an awards nomination form.

These awards recognize Albertans who have demonstrated outstanding achievement and leadership in making positive changes that create inclusive, barrier-free communities where persons with disabilities can fully participate. The awards are: the Gary McPherson Leadership Award, the Marlin Styner Achievement Award and Awards of Excellence in Education, Employment, Community and Public Awareness.

Who Will Take Care of Our Kids (When We No Longer Can) – Part 5

In this month’s installment of Who Will Take Care of Our Kids, we look at the gaps that exist in services for adults with autism.

There is no surprise that many gaps still exist in available supports. It was frequently noted that families are not planning ahead, and that the system lacks capacity to manage growing needs and increasing numbers. Less well known is the fact that individuals may face yet another support cliff when they move into seniors’ services, where financial benefits, aging health issues and housing models may change. The need for mentorship opportunities for both families and individuals, promoting a high-quality, trained workforce, the lack of public awareness and fragmented systems were also noted.
Lack of Planning

The main gap noted by stakeholders was that many parents do not plan ahead until a crisis occurs. Most parents are so focused on day-to-day survival they tend not to plan for the future. The daily stress of caring for their loved one makes it very difficult to take the time to search, plan and coordinate for future needs, and it can be difficult for parents to even think about a time when they are not going to be around. This overwhelming task is often put aside for another day that may never come.
Read more…

DEADLINE EXTENDED – Petition to Support Henson Trust Legislation

NOTE: The deadline for petition submissions has been EXTENDED to October 13. All petitions must be received by mail or delivered at Inclusion Alberta by this new date. Please act now to help bring Henson Trust legislation to Alberta!


Hello Advocates, Families, and Caregivers,

That’s a wrap! It’s time to advocate. The consultations are over but we are still taking feedback until October 13th.

Attached is a petition that you can print, sign, and pass along to all those who wish to see Henson trust legislation as a reality in Alberta.

Inclusion Alberta has agreed to collect the petitions and send them to the Calgary Currie office so that they can be tabled at the Legislature in the fall.

Please ensure the petition is filled out with a full name, Alberta address and signature, and then bring them in or mail them to Inclusion Alberta ( address on petition) or to the Calgary-Currie constituency office at 2108B 33 Avenue SW Calgary, AB T2T 1Z6.

The deadline is October 13.

The more signatures that we can present to the legislature for tabling, the better. Let’s show Albertans and the members of the Legislature that there is a great deal of support for Henson trust legislation here in Alberta. We will of course continue to send updates on our progress.

Thank you all for your participation and passion.

As always, feel free to contact our office regarding any questions or feedback on the Henson trust.

Brian Malkinson,
MLA for Calgary-Currie

Who Will Take Care of Our Kids (When We No Longer Can)? – Part 2

Carolyn Dudley & Shino Nakane

In last month's issue of Autism Around Alberta we introduced the "Who Will Take Care of Our Kids" study. This research project was spearheaded by Autism Alberta to help find out what is being done to create better futures for adults with autism, and how we can do more. This month we'll be summarizing some of the challenges that adults and caregivers currently face.

Research indicates that many adults with ASD live at home with aging parents. In a study from Ontario of 480 adults with ASD, 60% lived with family. Many adults with ASD remain highly dependent on family, and compared to higher-functioning individuals with other developmental disabilities, those with high-functioning ASD are less likely to achieve independent living.

Many adults with ASD, regardless of level of ability, need lifelong supports. In an American survey of 143 families caring for an adult with autism, 58% of adults with ASD needed help with activities of daily living (toileting, bathing, dressing), and 84% needed help with auxiliary daily living skills like bill-paying, cooking and cleaning.

Although some aging ASD families might not specifically identify themselves as a disadvantaged population, the unfortunate fact is that many experience negative physical and mental health and financial consequences resulting from the autism diagnosis. Parenting an individual with autism is associated with reduced quality of life and high lifelong levels of stress, depression and anxiety due to the nature of care required. Elderly caregivers of individuals with developmental disabilities, including ASD, frequently experience stress that can develop into more serious illness. Mothers of individuals with ASD reported significantly more time spent on care and chores and less leisure time compared to a sample of mothers of children without disability. Lifelong caregiving is very stressful, and in the context of unprepared support systems, is not sustainable.


Canadian Autism Partnership – Budget 2017 Proposal

Hi all,

As many of you know, for the past two years the Canadian autism community has been working on a proposal for a Canadian Autism Partnership (CAP). The expert working group tasked with this project has finished its work and the Executive Summary of their report can be found here.

The report includes a request for funding that would come from Budget 2017. Last week, I asked Health Minister Jane Philpott a question in Question Period, requesting support for the proposal. We have posted the question and answer on our Facebook page, with a call for action in support of the CAP. Here is the link:

Read more…

Fort McMurray Autism Non-Profit Opens with Hopes for Future Centre

‘It made me want to do more in Fort McMurray, but because we were so well set up, it was hard to come back’
By Travis McEwan, CBC News

Kirsti Mardell, and her 6-year-old son, Quentin who has a non-verbal form of autism.

Kirsti Mardell, and her 6-year-old son, Quentin who has a non-verbal form of autism.

Kristi Mardell got the keys this week for an office where Fort McMurray’s autism society will soon set up shop, good news that came five months after she and other members fled the wildfire with their children.

Many society members went to Red Deer or Edmonton in the days after the wildfire. The forced evacuation was especially stressful for autistic children, who need specific help and programs most children don’t require.

A handful of society members haven’t returned since the city reopened in June, because the supports and classes for their children were better than those provided in Fort McMurray.

“We evacuated to Red Deer and we were well setup there, and the services we got kicked in right away,” said Mardell, president of autism society in the Regional Municipality of Wood Buffalo. “Our kids had support in school right way. It was amazing how fast and supportive the other communities were compared to Fort McMurray.

“It made me want to do more in Fort McMurray. But because we were so well set up, it was hard to come back.”

Read more

Introducing Autism Alberta Alliance

Deborah Barrett
If you are a person with autism, or have a child with autism who is 20 or younger, you’ve probably had services including ABA-based treatments since diagnosis. It wasn’t always like that. My son is 28. When he was diagnosed those services were not available in Alberta. To get them, families paid tens of thousands of dollars out of their own pockets, or they went without.


Help Us Spotlight Housing Needs for Autism – Deadline October 21


Children with autism become adults with autism, and we need to make sure that these adults have access to a safe, comfortable and dignified living environment – even after they outlive their parents. The Government of Canada is currently developing a National Housing Strategy, and this is our chance to help set the agenda for housing for adults with autism and other disabilities. The more people who tell the government this is important, the more chance we have of being heard. With 1 in 68 children now being diagnosed with autism, we need the government to know that this is a huge problem that won’t be going away anytime soon.

To make your voice heard, you can fill out a short online survey here. Or make an even bigger impact by writing a letter or submitting your own ideas online. To see all the ways you can get involved, visit The deadline for submissions is this Friday, October 21, 2016.

Who Will Take Care Of Our Kids (When We No Longer Can)?

Deborah Barrett

It seems to me that life with Anthony, my 27-year-old, low-verbal son with classical autism, is often about thinking scary thoughts and then figuring out how to face my fears. It’s about looking at a future in which very little, if anything, is already set up to accommodate Anthony’s basic needs, let alone ensure he has a good life. For a while, it was school. (We eventually found good classrooms with teachers who really wanted to teach Anthony.) Then, even scarier, we worried about what he would do  when he graduated from high school? (We found a course at NorQuest College, then created Anthony at Your Service so he and others would have meaningful, paid work.)

Now, we wonder, who will take care of him when we are gone? Who will make sure his needs are taken care of and that his life is healthy, challenging, rewarding? Who will love him enough to make sure his life is good for many, many more years? That’s the scary thought we were able to put off in childhood, and even push away in early adulthood. But now it’s upon my husband and me.

It turns out we are not alone. When I brought up this question at an Autism Alberta board meeting a few months ago, every parent on the board, whether of older or younger children on the autism spectrum, identified with my fears. They all share concern that nothing currently exists that would provide the quality of life we want for our children, when we can no longer care for them.

Many of us do not have sufficient family who can manage care for our kids when we can no longer do it. We don’t see organizations, agencies or foundations in Alberta that are set up to do this in a caring, person-centred way. So what is in place elsewhere? Are there any models that can help us envision what we might want to put in place to manage our adult children’s lives when we are too aged, or tired or dead to be able to do it any more? What visions do we have that might help guide the creation of something that will ensure quality lives for our children as they mature through middle age and into old age themselves?

Autism Alberta’s Board of Directors has recently voted to engage one or two researchers to look more deeply into this question. We’d also like to hear thoughts from our membership. So let us know. I think it would be interesting to publish some of your thoughts and ideas in coming issues of Autism Around Alberta. We’d love to hear your thoughts and wishes on our Facebook parent group at – If you aren’t a member yet, apply to join and we’ll approve your membership. Your feedback will only be visible to other group members. If you’re not into social media, you can also send your thoughts to