April 8, 2014 Panel Presenters: Dr. Kevin Stoddart, The Redpath Centre, Toronto, ON Tom Jackman, Autism Society Canada & Autism Society Newfoundland Dr. Marc Woodbury Smith, Hamilton Health Sciences, Hamilton, ON Moderator: Margaret Spoelstra, Autism Ontario Panel: Exploring Support Needs for Adults and Eligibility Criteria for Developmental Services

Economic Costs 2 “Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications….. the lifetime per capita incremental societal cost of autism is $3.2 million. (page 343) “ “The Lifetime Distribution of the Incremental Societal Costs of Autism”. Michael L. Ganz, MS, PhD- Arch Pediatr Adolesc Med. 2007;161:

Key Message regarding eligibility Implement standard eligibility criteria to services for adults with ASD based on their functional needs rather than intellectual functioning through an Ontario- wide cross sector policy framework 3

Key Historical Initiatives in Ontario Position Paper on Bill 77: Presentation to Standing Committee on Social Policy 2008: Autism Ontario launches “Count Me In” list for adult issues 2009 – Established: Inter-ministerial Working Group for an Ontario Strategy for Adults with ASD 2009 – Report to Minister of Municipal Affairs & Housing: Ontario’s Long Term Affordable Housing Strategy 2009 – IMWG presents educational conference to Ontario Government leaders across 8 ministries 2010 – Joint presentation of MCSS and OPAAA at Woodview Conference 2013 Survey results released through Diversity Report

Key Historical Initiatives in Ontario – Ontario Ombudsman launches investigation into Developmental Services – Ontario Parliamentary Select Committee reviews Developmental Services 2013 – “Ending the Wait Report” on housing 2014 – Release of HCARDD Atlas on the Health of adults with Developmental Disabilities

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The argument for specialist mental health services: Mental health problems are common in this population (particularly depression and anxiety); The core features of ASD and its additional developmental comorbidities impact on the symptomatic presentation, aetology and treatment of mental health problems in this population; Psychopharmacological and psychological treatments may not necessarily mirror those offered in generic services. Therefore, specialist, team based, expertise is required. Mental health problems among adults with ASD Marc Woodbury-Smith, McMaster University

Supports Housing Employment Doctor Financial Community Family

Challenge There is very little infrastructure established for services to people with ASDs who do not have an intellectual disability, leaving them without services or services to meet their needs

Autism Society of Newfoundland and Labrador Elaine Dobbin Centre

Housing - Stella Burry

Employment and meaningful day activities

Targa Newfoundland

Community

Establishing a best practices service delivery model for individuals on the autism spectrum within the current framework will serve only those individuals who have concurrent intellectual disabilities and will not meet their specialized needs. Both specialized services and enhanced community service capacity are needed to meet the service needs of the entire adult ASD population. Summary

Moving Forward: Multiple Systems Integration Comprehensive and Effective Service Provision Knowledge and Information Identification and Mobilization

Multiple Systems Integration The Networks of Specialized Care should be used to promote better cross-systems service coordination. Consideration should be given to a clinical electronic records exchange system for ASDs, and a centralized patient database. Ensure accessibility through individualized funding, creation of new/expanded services, and public-private partnerships. Successful life transitions in multiple sectors must be an area of focused interministerial collaboration and cooperation. The mandate of the IMWG should be strengthened and their efforts communicated more broadly.

Comprehensive and Effective Service Provision Service funding must be tied to continuing quality assurance and evaluation, expected in other sectors. Successful models of service provision in the literature, and occurring throughout the province, need to be examined. Increase to the Passport/SSAH funding and other funding streams must be provided for those not eligible for DSO. Integrated residential and life skill support models should be developed for those lacking basic requisite life skills. To guide Ministries in the delivery of effective services an ASD Expert Advisory Committee should be established.

Knowledge and Information Identification and Mobilization Adult ASD Centres of Clinical and Research Excellence need to be established in all regions of the province. Current research and best practices should be at the forefront of professional training, using e-learning in collaboration with professional associations/colleges. Training/consultation can be provided that would enable CMHOs to provide transitional services to adult MH sector. Adult mental health service providers urgently need training in assessment and intervention with this group. Comprehensive training of physicians must occur by expert medical colleagues, well-versed in adult ASDs.

Discussion and Questions