Who are we?
ACT Now for Adults with Autism is a group of volunteers who have a long history of working with the Autism Society of Edmonton, and Autism Society of Alberta. We are comprised of past and current board presidents, board members and long-time volunteers of these two groups. As our children with autism have become adults, we have also become keenly aware of some of the gaps in services for them.
So, we formed a group and started to look into services for adults with autism in the fall of 2010, with a goal of advocating in positive ways with the Alberta government to improve services. The work of our group has been endorsed by the Autism Societies of Edmonton and Calgary (2011). We now have a group member on the Board of Autism Society Alberta, to inform and receive feedback to the ASA Board about our advocacy work.
Our goal is to develop provincial government-community working partnerships with a focus on quality, cost-effective results that will maintain dignity and support for adults in Alberta who live with Autism throughout their lifespan.
What work has been done?
In 2010 we began reviewing current research, documents and reports about services to adults in Canada, the States and United Kingdom. We found that the United Kingdom’s Department of Health has implemented a model that we thought would be a real asset to Albertans.
So we wrote a summary of the current information about services to adults with Autism and entitled the document “Act Now for Autism”, dated March 16, 2011, the title of which we adopted as the name of our group. We presented the document to the Premier (Ed Stelmach) and the Ministers of relevant ministries such as Human Services, Health, Housing, Employment, Advanced Education, Education, and the Premier’s Council on the Status of Persons with Disabilities. We were acknowledged in the Legislature, when MLA Doug Elniski, presented the paper to the Government in March 2011. We subsequently met with Human Services Deputy Minister Frank Oberle, and since then have had a number of meetings with representatives of Human Services, including Assistant Deputy Minister Brenda Lee Doyle.
We have also continued to work on identifying the needs of Adults with Autism, and making efforts to work on improved services in specific areas such as:
· Health: Comprehensive, expert (tertiary) medical care & diagnosis for adults with Autism
· Housing: Improved and greater variety in housing, especially community-based housing with on-site support for adults who have aging parents
· Employment: promoting support of all kinds of employment as viable and valuable, including self-employment
· Advanced education: a need exists for increased opportunities/support for adults who want to attend post-secondary education like their peers
· Social-recreational programs: various types are needed in all communities, such as: social-skill development, discussion/support group style, information sharing presentations, groups around a common interest, and groups with or without respite component.
· Spectrum-wide services: people from any part of the Autism Spectrum require services appropriate to their needs.
We continue to seek and learn from new information about the needs and best practice ways to provide services to adults with Autism through engagement with other groups and through reviewing and including the latest information such as the recent CASDA 2014 report, in our list of documentation.
Current progress:
Health:
Act Now group members have been involved since 2012 in meetings with the medical staff and administration at the Glenrose to plan for and implement a medical Clinic for Adults with Autism. Supported by funding from the Sinneave Foundation, the Glenrose struck a working group to develop an Adult Health Service Program Plan. That Program Planning Report was completed in April of 2014. In December of 2014, senior administrators at the Glenrose made a decision to utilize funding for a “Lifespan Clinic” and some remaining funds from the Sinneave Foundation, and to use the report to develop a medical service for Adults with Autism.
So, the first dedicated tertiary (expert) medical clinic for Adults with Autism in Canada is now being developed at the Glenrose. There are only four other services in Canada (and only 4 in the USA) that have a service component focused specifically on adults, and none of those in Canada has a specific medical focus. This new Adult Autism Lifespan Clinic service will open at the Glenrose sometime in the fall. Watch for news this fall of the Clinic opening, and contact Glenrose if you need expert medical services due to complex issues, and if you live in the Edmonton area, once the announcement of the Clinic opening is made. This will be an important precedent-setting health service model that we hope can be matched in other health centers in the province in the future.
Housing:
Many meetings with members of the Act Now group and members of the housing and construction community, and government ministries have resulted in great progress in establishing the needs of adults with Autism as a dramatically increasing population that has unique and varied housing needs. There are pockets of very good housing among the current options, but many gaps and areas of unique or high needs that are not being well served in the community.
An area of specific focus has been on housing for people with significant daily needs, in a safe community based area with excellent access to services. This is a critically important need for families where parents who are primary caregivers and/or primary “administrators” of their child’s services are now aging. “Who will look out for my son/ daughter’s safety / housing needs after I am gone?” is a key question.
One excellent new answer has been found in the establishment of spaces for adults with special needs in locations, similar to the new comprehensive “aging in place” style housing with on-site support, being built in recent years with seniors in mind. Now, similar communities are being developed for Adults with Autism or other significant needs, due to the advocacy of members of the Act Now group. Check out “Southwoods Village at Hazeldean” in Edmonton, as a great template of a new housing option. This housing has some wonderful features that might suit the needs and fill a gap in housing for some adults with Autism who have higher support needs.
Next steps:
We believed in 2010, and we still believe now, in developing and implementing an Alberta Strategy for Adults with Autism. We will continue to promote this idea to the specific individuals within the new NDP government ministries that have the mandate, authority, and resources to address issues facing adults with autism on a cross-ministerial basis. We will also continue to work on a step-by-step basis to improve services for adults with Autism, making in-roads of improvement where-ever we can create the opportunity to do so.
Respectfully Submitted by
Anita Ferri
ACT Now for Adults with Autism
Prepared by Anita Ferri, August 2015 page 1 of 2