ASPIRE Year End Report For 2005

Prepared For Guelph Services For The Autistic and
Waterloo-Wellington Autism Services
By Nancy Cherry

GSA appreciates Nancy's untiring efforts during 2005, and recommends this sort of project for otehr regions and special needs besides adults with autism spectrum disorders. Nancy's terms of reference were to concentrate on researching services for adults in the Region of Waterloo. Other aspects of the ASPIRE project were kept up by others.

Project Summary
1.      Purpose and scope of the final phase of the project
·        Representation and feedback from the six MCSS policy forums on Transforming Developmental Services:
a)      Specialized Resources
b)     Residential Options
c)      Citizenship and Advocacy
d)     Quality Assurance
e)      Funding Models
f)       Supporting and Strengthening Families
·        Following up key focus persons and families, and noting and reporting good models, issues, concerns, supports and services that require further investigation and advocacy.
·        Compiling a list of really helpful resources and services that already exist in this region for adults—both publicly funded and user-pay--and identifying gaps
2.      Methods
  • Attendance at three out of six MCSS policy forums with written reports sent to Elizabeth Bloomfield; reports obtained from forums not personally attended
  • Numerous phone calls and personal meetings with key people in the developmental services sector as well as families
  • Compilation of services available in the region with some indication as to the usefulness of each.
3.      Results
  • Reports from all MCSS policy forums are posted on OAARSN; presentation and discussion with the ACES group re forums and access mechanisms
  • Information about service available in the region is scattered and frequently inconsistent.  On several occasions it took many attempts to establish an accurate picture of only one service. There were exceptionally long delays in responding to my inquiries. Much time was spent following up to ensure a response. It was impossible to reach most families currently using several community services (no contact information and no way to get it).
  • Development of two regional resources for families and services providers
a)     Developmental Services Chart
b)     Summary List of Adult Autism Services 
4.      Conclusion
  • ACES was able to provide meaningful input to the Ministry of Community and Social Services and the Ministry of Children and Youth Services re the Joint Access Mechanisms Project
  • Information from both families and service providers is inconsistent at best. I was able to contact only a limited number of families and their opinions of any given service varied greatly, depending on their priorities. Service providers naturally wish to present their programs in the best possible way. Most truly believe that they are able to successfully accommodate adults with ASD; however, when asked specific questions (such as assistance for individuals who are non-verbal) many were not familiar with strategies such as PECS, ASL, communication boards, etc.
  • There are no adult services specifically for individuals with ASD. Most adults with ASD are currently supported by generic developmental services. I believe the main reason for this situation is the philosophy of the provincial government. The emphasis is clearly on preschool and school age autism services with little attention to adult services. The following are direct results:
a)      Financial Constraints - all resources report significant under funding; funding is based on the number of individuals supported so there is no incentive to develop expertise for a relatively small population
b)     Staff Training – variable, but usually limited to general developmental disabilities (ASD may or may not be a component of the training) with a focus on behaviour management (CPI or NVCI training) and first aid.
5.      Recommendations
There is an immediate need for the following:
  • Autism specific resources and training is needed to provide a standard of knowledge and service that individuals and families can expect regardless of the organization involved
  • Individualized supports based on the unique needs of those with ASD
  • Public awareness re the unique challenges and gifts of adults with ASD
  • Accountability - greater collaboration with individual, parents, and caregivers in the planning and implementation of services
  • Expansion of recreation and work (paid and unpaid) opportunities for adults who are out of school and not involved in residential programs
  • Coordination of Health Services – CCAC is not involved with this population unless there are significant physical disabilities. This is unacceptable, considering the multiple health needs among adults with ASD
  • Coordination of Mental Health Services – mental health service providers are only involved if there is a primary diagnosis of a mental health disorder. Many, if not most, individuals with ASD experience mental health issues (such as anxiety, depression, rage) and these must be addressed
  • Living Arrangements – offer a variety of choice from full supportive environments to independent living for adults with ASD based upon their individual strengths and needs
  • Easy access to reliable information on services and support for adults with ASD, such as a searchable web page and information phone line
6.      Appendices
  • Adult Protective Services Association of Ontario (APSAO)
  • CMHA Distress Centres and Crisis Support
  • Developmental Services Chart
  • Emergency Service Pathway
  • Foundations Programs
  • Special Agreements Officers For Waterloo Region
  • Summary List of Adult Autism Services