February 29, Organization Representatives:

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1 Ontario Partnership for Adults with Asperger s and Autism (OPAAA) Response to Patients First: A Proposal to Strengthen Patient-Centred Health Care in Ontario February 29, 2016 Who We Are: Since 2006 the Membership of OPAAA has represented the largest collective group of service providers and advocates in Ontario that have a specific focus on the needs of adults with Autism Spectrum Disorder (ASD) and their families. Organization Representatives: Autism Ontario: Margaret Spoelstra, Executive Director, OPAAA Co-chair The Redpath Centre: Dr. Kevin Stoddart, Director, OPAAA Co-chair Autism Speaks Canada: Jill Farber, Executive Director Geneva Centre for Autism: Debbie Irish, CEO Kerry s Place Autism Services: Isabel Meharry, Interim CEO Woodview Mental Health and Autism Services: Robin Brennan, Director Autism Services York University: Dr. Jonathan Weiss, Chair in Autism Spectrum Disorders Treatment & Care Student Researcher: Evguenia Ignatova Parent Representatives: Elizabeth Hunter, Niagara Ginny Pearce, Toronto Howard Weinroth, Toronto In the opening statement of the Canadian Medical Association Journal s paper entitled Autism spectrum disorder: advances in evidence-based practice (Anagnostou, E, et al p. 509) the authors begin with these observations: Autism spectrum disorder (ASD) encompasses wide variation in symptom severity and functional impact. The core features of ASD include impairments in 1

2 social communication, repetitive behaviours and restricted interests. Not all people with ASD identify their challenges as a disorder. Autism spectrum disorder affects more than 1% of the population, and a dramatic increase in its recognition is creating huge demands on health care systems for timely and accurate diagnosis. Health care professionals in many capacities encounter people and their families coping with ASD, and optimal care depends on a large network of providers, given the breadth of the associated medical issues. In that same article, authored by many of Canada s top medical researchers on the subject of ASD, these key points are highlighted. Autism is heterogeneous in cause and presentation; the spectrum of disorders is recognized in DSM-5 as a collective category called autism spectrum disorder (ASD). Autism spectrum disorder is much more common than previously thought (prevalence of about 1%). Up to 20% of ASD cases are associated with genes, copy number variations and functional pathways; these findings direct focus to synaptogenesis and neural connectivity as common causal elements. Early detection through improved awareness, family studies or screening programs allows early and effective interventions. While these statements provide a quick synopsis of key medical aspects of ASD as we currently understand them, they are only a starting point in identifying, understanding and responding to the lived experiences of people on the autism spectrum, the impact of the ASD on families and caregivers and addressing the public policy and necessary supports that are fundamental to the health and well-being of these vulnerable Ontario citizens. This submission by our OPAAA group will focus primarily on adolescents and adults on the autism spectrum. Addressing the health care needs of these individuals requires a response that considers the full lifetime of people on the spectrum within a flexible framework of supports that is holistic, evidence-based, interdisciplinary, flexible and well-coordinated across multiple Ontario Ministries. Children with ASD grow up to be adults with ASD. The number of adults with ASD is increasing across the province and those adults are being met by a society and a system filled with gaps that are currently unprepared to meet their needs. Ontario Specific Health Research on Adults with ASD: 2

3 Recently, work by the Health Care Access Research and Developmental Disabilities (H-CARDD) research group has elucidated the health and health needs of Ontario young adults with ASD. Stemming from an Applied Health Research Question from the Ministry of Child and Youth Services, H-CARDD identified 5,095 young adults with ASD in Ontario between years of age, which represents approximately 1/3 of all young adults with developmental disabilities who could be identified through administrative databases and through the Ontario Disability Support Program database. It includes young adults with and without intellectual disability. Their report indicates that young adults with ASD are significantly more likely to be diagnosed with at least one psychiatric disorder (51.2%) compared to young adults with other forms of developmental disabilities (38.3%) and young adults without any developmental disability (19.5%). Compared to the general population of young adults in Ontario, those with ASD are more likely to have at least one substancerelated and additive disorder diagnosis (5.4% vs. 3.2% in the general population), and more likely to have experienced at least one chronic medical condition (29% vs. 21.8% in the general population), like diabetes, hypertension, or cerebral palsy. Young adults with ASD are more likely to visit the emergency department for psychiatric reasons compared to the general population of young adults (5.4% vs. 1.8% in the general population). The CASDA National Needs Assessment Survey: The Autism in Canada report, included information from 1,730 family caregivers reporting on 1,676 individuals with ASD in Ontario (including 386 adults with ASD), along with 82 self-advocates (adults with ASD speaking about their own experience). The top service needs identified for both adults with ASD and by self advocates were: employment/day programs (40-60%), mental health treatment (55%), social skills programs (37-49%), life skills training (48%), post secondary education (34-38%), recreational/activity based programs (31-37%) and housing/residential options (31%). Further, the psychiatric diagnoses identified by this combined group included anxiety (43-62%), depression (25-54%), OCD 17-26%, other (15-24%) and psychosis/schizophrenia (4-6%) In Ontario we have only begun to respond to the lifelong learning and health challenges faced by people with ASD who, with their families, are faced with daily coping in what 3

4 may best be described as hostile environments. Yet there are many individual examples and growing evidence that demonstrates what is possible when we focus our energies on assessing individual needs, on adapting environments to maximize participation and independence, on training professionals, and equipping adults and their caregivers to be effective advocates for a lifetime of learning and good health. To that end, OPAAA makes the following recommendations to MOHLTC in order to strengthen patient-centred health care for Ontario adults with ASD and their families. Recommendations: 1) MOHLTC needs to play a crucial role in the provision of supports to this group which has been inadequate in the community. Government-sponsored and supplemented services for those with medical conditions including those with ASD and mental health disorders are a right for all Ontarians, and not discretionary. MOHLTC must a) Recognize their essential role in the delivery of services to adults with ASD, and plan actively with community providers to meet their medical needs. b) Engage with retirement and long term care facilities to plan for the large cohort of aging adults with ASD that require enhanced and knowledgeable best practices in ASD/aging. c) Develop accessible psychiatric and counselling supports within communities, created through collaborative efforts with generic service providers and ASDspecific providers. d) Support the work of the Ontario Working Group on Mental Health and Adults with ASD which is demonstrating leadership in addressing mental health needs of this population thus improving access to evidence-informed, timely, individualized supports. 2) The need for comprehensive, accurate cross-sector data collection is a priority. Those identified in Health Care Access Research and Developmental Disabilities (H-CARDD) and ICES databases are key sources of information but does not include everyone with ASD, as it involves only those adults years of age with ASD identifications in a health database (such as OHIP) or Ontario Disability Support Program database. 4

5 a) Create a tracking system that identifies all individuals with ASD in Ontario. The work begun by the HCARDD process needs to specifically identify the profiles and needs of the ASD population. Data must also be included from Education. b) The recently launched initiative to have standard practice and a single working standard database throughout the nine Developmental Services Ontario locations is encouraging. Comprehensiveness and integrity of data must be assessed regularly and include reasons for an individual s exclusion from the DSO. c) MOHLTC must collaborate with community agencies, experts in adult ASD, and other key Ministries (e.g. MCYS, MCSS, MTCU, MEDU) in order to ensure that necessary client data is collected and can be integrated across systems. 3) Assist families and adults with ASD in finding a knowledgeable General Practitioner. Training for GP s about the nature of ASD and its health implications is almost non-existent. Adults with ASD need informed GP s who understand their unique communication difficulties and concerns to receive quality of care. 4) Consider the intent of Ontario s Act to promote Social Inclusion. The current regulations surrounding this act may currently be a barrier for more than 50% of adults on the autism spectrum in accessing Passport funding that would contribute to their meaningful participation in all aspects of adult life. Additionally, those ineligible for Passport funding are then also ineligible for housing, life and social skills learning opportunities that would help them become more independent and have more success in securing employment. Without these supports, they are at higher risk for health and mental health challenges that could be prevented. If the stated goals of MOHLTC are these: 1) to make it easier for patients to find a primary health care provider when they need one, see that person quickly when they are sick, and find the care they need, closer to home; 2) to improve communication and connections between primary health care providers, hospitals and home and community care; and 3) to ensure the province has the right number of doctors, nurses, and other health care providers, and plan locally to make sure they are available to 5

6 patients where and when they are needed, then they must consider the past, current and future health care access and experiences of Ontarians with ASD. In conclusion, we must, as a province, be vigilant that we do not replicate the past abuses to people of developmental disabilities and mental health disorders through marginalization, segregation and institutionalization, nor that we add to that list the growing number of adults with ASD currently ineligible for funded supports. It is not with bricks and mortar that loss of basic rights will occur in the 21st century but with restrictive social policies and ill-informed oversight in the lives of affected Ontarians. We welcome further opportunity for dialogue to assist in the building of better health care supports for this sector of the Ontario population. References/Resources Anagnostou E, Zwaigenbaum L, Szatmari P, et al. (2014). Autism spectrum disorder: advances in evidence-based practice. Canadian Medical Association Journal, 186(7), Autism Ontario (2008). FORGOTTEN: Ontario Adults with Autism and Adults with Aspergers. Dudley Carolyn, Emery J.C. Herbert. The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder. The School of Public Policy, University of Calgary. Volume 7 Issue 1 January 2014 Lunsky Y, Klein-Geltink JE, Yates EA, eds. Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario. Toronto, ON: Institute for Clinical Evaluative Sciences and Centre for Addiction and Mental Health; Link to HCARDD info: 6

7 Stoddart K, Burke L, Muskat B, et al. Diversity in Ontario s youth and adults with autism spectrum disorders: complex needs in unprepared systems. Toronto (ON): The Redpath Centre; Weiss, J.A., Whelan, M., McMorris, C., Carroll, C. and the Canadian Autism Spectrum Disorders Alliance (2014). Autism in Canada: National Needs Assessment Survey for Families, Individuals with Autism Spectrum Disorder and Professionals. 7