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.

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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: https://www.facebook.com/MikeLakeMP/videos/1330076580356533/.

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.”

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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.

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Help Us Spotlight Housing Needs for Autism – Deadline October 21

housing-small

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 letstalkhousing.ca. The deadline for submissions is this Friday, October 21, 2016.

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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 https://www.facebook.com/groups/autismalberta/ – 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 AAA@autismalberta.ca.

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Invitation to Participate: Leading the Way to Promoting Self-Determination of Individuals with Autism Spectrum Disorder

CFASAre you an independent adult with autism spectrum disorder or Asperger’s syndrome?
Would you be willing to talk about your experience of self-determination?

The Centre for Autism Services Alberta is sponsoring a study to identify new practices to promote the self-determination of individuals with autism spectrum disorder.

Self-determination is , “people controlling their own lives and their own destinies” (Wehmeyer & Schwartz, 1998,
p. 76). Greater self-determination is linked with higher quality of life in individuals, including those with autism
spectrum disorder (Shogren, Wehmeyer, Palmer, Rifenbark & Little, 2015; Wehmeyer, 1999; and Wehmeyer and Schwartz, 1998).

Why: To determine ways for the Centre for Autism Services Alberta to promote the self-determination of people with autism spectrum disorder ASD.

Who: Independent adults with ASD (or Asperger’s syndrome)

What: Participate in a 30 to 45 minute interview to share your stories related to your own self-determination. What has helped you to be self-determined? What has hindered your self-determination?

How: Interviews can take place face-to-face in a location that is comfortable for you, or through email, or via Skype. Reasonable expenses to participate may be reimbursed (e.g. parking costs).

For more information contact:
Jackie Ryan, Master of Arts in Leadership Student at Jackie.2ryan@royalroads.ca

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Get Involved in the Federal Election!

CASDA

We strongly encourage you to write your Member of Parliament and ask how their Party platform will support autism and the Canadian Autism Partnership in the federal election on October 19.

Click here for a letter template in a customizable format for your convenience. Please feel free to copy the text to  your preferred letterhead, customize it with your MP’s name and Party, and mail or email it to them as soon as possible.

CASDA has already sent letters to each of the five federal Party Leaders, including the Prime Minister, requesting their response to this important question. We want our Members of Parliament to hear the autism community’s voice loud and clear, and to know that we are listening for their response.  For responses received to date please visit the CASDA website.

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Are You the Parent of a Child with Autism?

Parents needed for research study on personal growth of parents of children with autism spectrum disorder (ASD)

Are you the parent of a child who has been diagnosed with autism? We are investigating the coping strategies used by parents and the personal growth experiences they have in raising children with ASD.

Click here to learn more

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