Full “Who Will Take Care Of Our Kids?” Report Now Online

What happens to adults with ASD once their parents or guardians are no longer able to support them or are deceased? Last  year, Autism Society Alberta tried to help answer this question by launching the project ‘Who Will Take Care Of Our Kids (When We No Longer Can)?’

Now, after several months of research, Autism Society Alberta is releasing the results of the study. You can find the full report here (PDF format).

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RSVP EXTENDED TO JUNE 30 – Practical Tips for Living Successfully on the Autism Spectrum

Autism Research Centre (ARC) Presents
Practical Tips for Living Successfully on the Autism Spectrum

Join us at our upcoming FREE information session!

Date: Friday, July
14th, 2017

Time: 9:00 AM–12:00 PM

Location:
Robbins Learning Center Theatre
Royal Alexandra Hospital
Edmonton

Cost: Covered by donations from the ARC

  • Featuring interesting guest speakers
  • A chance to network with other families
  • Meet our team and hear about our research findings

SPEAKER SESSIONS
1. Dealing with Problematic Behaviors

  • Restricted & repetitive behaviors
  • Picky eating
  • When to consider medications

2. Education & Employment for Adults

  • Employer capacity
  • Worktopia Project
  • University supports

Please note these presentations are intended for parents, and we are not able to offer childcare. We look forward to seeing you there!

To facilitate organization and planning, please RSVP by June 30th, 2017 to Erin Kapler at erin.kapler@ahs.ca or 780-735-6106 ext. 1

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Save The Date!

Autism Society Alberta
Annual General Meeting
Saturday, August 26, 2017 @ 10:00 AM
Red Deer – Location TBA

All members welcome!

 

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

Part 1 of a Series
Carolyn Dudley & Shino Nakane

Most typical parents rarely give thought to what happens to their adult children when they are no longer able to support them or when they are deceased. Most families see their children become adults, completely independent in all aspects of life, and in many cases the children end up caring for their aging parents. This is the normal aging process. But for families with a dependant adult living with ASD, the support and care dynamic is inverted. Aging parents often continue to provide support for their adult with ASD well into their retirement years. This is problematic, because as parents of dependent adults with ASD age, they will be unable to sustain efforts of support. Not only is it challenging to be a lifelong caregiver and advocate, but parents are also living with this agonizing question of ‘what happens when I am gone’? Many do not want to solely rely on relatives or the other surviving children, but have no idea what is needed or where to start.

In September 2016, the Autism Society Alberta Board of Directors funded the project ‘Who Will Take Care Of Our Kids (When We No Longer Can)?’ The purpose of this project was to further the Board’s understanding of this issue. Thirty-four stakeholder interviews were conducted, and three questions were asked of each stakeholder:

  1. What currently exists to ensure a sustainable quality of life for adults with ASD?
  2. Where are the gaps?
  3. Are there any innovative ideas or new models?

Stakeholders gave examples of housing models that were working for some: host families,  family-owned homes with government support, supportive roommates, and communities of faith that have created housing. There were also other examples of housing models, like co-op living. Stakeholders noted programs to address the issue, such as the concept of a network of people who voluntarily agree to support the individual for life, government funding for those who are eligible (AISH, PDD, RDSP), government services (public guardian), Canadian and provincial coalitions that are working specifically on this issue, and the importance of a support plan or template to pass on detailed information to new caregivers and guardians.

The most common gap noted was that parents are not planning ahead. Stakeholders noted that some aging families did not even have the basics in place, like an appointed guardian or a will.  Other gaps included:

  • The lack of quality housing, which has resulted in growing wait lists
  • The cliff that people face when the individual turns 65
  • The lack of caring, trained and available staff
  • The lack of public awareness of challenges faced by aging families, and
  • The lack of mentorship for both families and individuals to connect with those who have succeeded in creating sustainable quality of life.

Overall, many services that already exist were not known by families or agencies. Good ideas are not easily accessible. The system of support is fragmented, unintuitive and difficult for parents to navigate.

New innovations are emerging in areas of technology to enhance independent living, insurance system approaches, and the use of a mentorship programs to help others create lifelong quality models. The concept of a one-stop coordinator where all relevant information and support exists is also being discussed.

Through this research, best practices were also discovered that could be used together to help address this growing problem. These best practices include:

  • Creating a network of committed people for support
  • Planning early
  • Enhancing financial security through RDSP contributions and discretionary trusts
  • Accessing home settings with high level qualified agency staff who work in collaboration with families
  • Ensuring communication through ongoing care/support plans

These outcomes are complicated and time consuming for families to achieve. For some families, they may be impossible. Improved information access and better support for families navigating the system, plus increased public awareness and enhanced system capacity, are among a few of the answers moving forward.

This is an overview of some of the challenges, best practices and possible solutions that were uncovered through this study. Over the coming months, we’ll be featuring further excerpts from the Who Will Take Care of Our Kids report in Autism Around Alberta.

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Facebook Autism Support Groups in Alberta

The following are private, members-only Facebook groups dedicated to autism discussions and support. To read and comment in any of these groups, click the Join button and wait for approval by the group moderators – you should usually be approved within one or two days. If you know of any other groups that might interest our members, please send your suggestions to webmaster@autismalberta.ca. Thank you!

Central Alberta

Autism Parents of Camrose
https://www.facebook.com/groups/1685697391679171/

Connecting Autism Parents, Red Deer
https://www.facebook.com/groups/654093594652745/?ref=bookmarks

Autism Families with Adults – Central Alberta
https://www.facebook.com/groups/1233080863416855/?ref=bookmarks

Southern Alberta

Chinook Autism Society
https://www.facebook.com/groups/chinookautismsociety/

Edmonton

Autism Edmonton Community Group
https://www.facebook.com/groups/88981583037/?ref=br_rs

Calgary

Calgary Autism Supports For Raising Teens And Adults
https://www.facebook.com/groups/1661948614044100/

Provincewide

Alberta Parents ADD/ADHD/AUTISM/ANXIETY Support Group
https://www.facebook.com/groups/AlbertaParentsSupportGroup/

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Cycle for Autism Edmonton 2017

On Sunday June 4th, 2017, Autism Edmonton is hosting its eighth annual Cycle for Autism event at Gold Bar Park! Cycle for Autism is a fun and inclusive event for all ages and abilities, held annually to increase awareness and acceptance of autism, and raise essential funds for Autism Edmonton. Revenue from Cycle will go towards our programs, support services, and member events that support individuals and families living with autism. The event is free, but teams and individuals are encouraged to collect pledges to raise money for Autism Edmonton, a local organization that provides essential information, programs, and support to people with autism and their families. Teams and individuals then participate in the event by running, rolling, walking, or cycling!

We have three routes this year: a 1km bike parade, a 1.5 km distance, and a 3.5km distance! For the bike parade, we are encouraging teams to dress up their bikes and themselves, as we will be giving out Spirit Prizes to individuals on the route who are showing their spirit through their decorations, energy and enthusiasm, effort, and anything else that makes the judges smile! Lastly, we will have other fun activities such as balloon art, bouncy castle, resource fair, clowns, prizes, and refreshments.

To donate, register yourself or your team, to volunteer, and to learn more about our event, please visit www.cycleforautismedmonton.com!

 

Click below to view the full poster

 

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