Kids Grow Up: Teens and Adults on the Autism Spectrum

Kids Grow Up: Teens and Adults on the Autism Spectrum Advocacy Campaign Kit

Take Action The Transformation of Developmental Services Sector is hopeful, but how that will impact adults on the Autism Spectrum remains to be seen. The current political landscape provides momentum to put forward the Adult issues. This advocacy kit was developed to help families across Ontario to advocate for adolescents and adults with ASD. Now is the time to take action - because kids grow up. For years, many in the field, including parents, agencies, and societies such as ASO, have been sounding the clarion call - these cute children are growing up very quickly, or are already adults. What's out there for them and their families? Not only that, folks, but guess what, parents have also "grown up" and some, who might not admit it, do have some difficulty continuing to be the primary caregiver. The "enlightened ones" are taking notice. Over the years ASO has raised this issue - "what about the adults with autism"? -Howard Weinroth Adult Working Group

ASO Adult Project: Supporting Adults with ASD One of the ongoing challenges for ASO chapters is to represent all ages and stages of the spectrum. With so much of the focus in the past five years on young children, ASO is keen to ensure older individuals with ASD and their families are not forgotten. The goal behind the ASO adult project is to promote, develop, and enhance services for adults with ASD in Ontario. The starting place for this project was the 1991 ASO document, Our Most Vulnerable Citizens since the key findings of this research, described earlier in this chapter, sadly still exist today. The first goal of the project was to compile a list of adult service providers, key volunteers and advocacy groups in Ontario who deal with adult issues related to ASD. Two meetings were held (in May and June 2004) with representation from a variety of these people (parents, friends, individuals and service providers) and input came from ASO Chapter Presidents and Board representatives at the ASO AGM in June 2004. One caution is that there was not representation from northern and eastern Ontario or from largely rural areas in these meetings, so it should be recognized that those areas may have different/additional issues than those listed. The top three issues that came out of these meetings were the need for: 1. Individualized funding: portable, and equitable across the spectrum. 2. Specialized supports for adults: comprehensive/clinical (psychiatry) group and/or individualized direct support; day, residential, employment, respite supports with choice in all areas across the province. 3. More networking/communication, better affordable housing, more support groups, accurate gathering of information on ASD numbers and best practices, increased advocacy re: ODSP regulations, and income/employment supports. ASO also responded to the request for contributions to Transforming Services for Individuals with Developmental Disabilities by the Ministry of Community and Social Services in November 2004. This was a great opportunity to call attention to many of the key issues for adults with ASD that were raised at the earlier meetings. It is clear that ASO needs a way to get accurate information about what the reality is for adults with ASD - where people are, what they need, and what and where best practices are. To date, ASO has not been able to be convincing to the government, particularly about adult issues, because the necessary statistical evidence has not been available. A survey about students transitioning from school to adulthood was distributed in late October 2005 to 10,000 schools across Ontario and we await the results of that. ASO and ASD-CARC are partnering on an online version of this survey and future online adult issue research surveys in order to gather crucial data. We also hope to develop a tool kit for regions (explaining things such as how to set up your own meeting, range of options, questions to get answered, steps involved in facilitation, how to set up your own support group, etc.) since every region has different capabilities to provide appropriate supports. This tool kit is still in the development stage, but progress is being made. If you would like to support this project in any way or pass on information that can assist it, please contact ASO Project Leader Patricia Gallin through the provincial office at 416-246-9592 or mail@autismsociety.on.ca. Adult Manual Living With ASD: Adolescence and Beyond

Update on Autism Society Ontario s Adult Project Spring 2006 Since May 04 ASO has begun a project to promote, develop and enhance services for adults with ASD in Ontario. Community Input: compiled a list of adult service providers in Ontario, key volunteers and/or advocacy groups on adult issues related to Autism Spectrum Disorders. Two meetings were held with representation from parents & service providers and input from ASO presidents & board representatives at ASO AGM in June 04. The top 3 issues to help guide the process were: 1) Individualized Funding 2) Specialized Supports for Adults 3) More networking/communication, better affordable housing, more support groups, accurate gathering of information on ASD numbers and Best Practises, increased advocacy re: ODSP regulations & income/employment supports Government Relations: ASO submitted a paper to MCSS on Transforming Services in Ontario for People who have a Developmental Disability in November 2004 and will be submitting a further response to consultation questions Opportunities and Action on June 30, 2006. ASO Presentations to the Legislative Committee on the changes to the Ontarians with Disabilities Act occurred in five regions across Ontario. ASO has been participating in most of the regional forums on topics related to the MCSS s planning for Ontarians with Developmental Disabilities. ASO has also submitted a new report of recommendations to Ontario s Minister of Finance for 2005. Booklet/Video/Public Presentations: In partnership with The Autism Group and an Ontario Citizenship grant, ASO produced first hand accounts of adults on the Autism Spectrum in a booklet and a video. Public speaking opportunities for these adults were supported across the Greater Toronto Area. Survey: Developed the Needs Analysis Survey for Secondary Students with ASD who are transitioning from school. The purpose of this October 2005 survey was to gather information that will help ensure that the appropriate services are available for adults with an autism spectrum diagnosis. Results of this survey will be presented at ASO AGM in. Symposiums: ASO is partnering with Woodview Manor, Autism Support Services, McMaster University and McMaster Children s Hospital and will be participating in the May 06 Stages of Autism: Adolescence and Beyond symposium in Hamilton, Ontario. ASO s role has been assisting with the Community Forum session where attendees will prioritize the service needs for teens and adults with ASD so that they can be presented to the Minister in a direct meeting in the near future. The Autism Society Ontario Annual General Meeting and ASD Conference theme this year will be "Kids Grow Up": Adolescents and Adults on the Autism Spectrum on June 16-17, 2006. The school survey results, a toolkit to help ASO chapters support adults with ASD and the teen/adult manual will be presented at this event. Manual: ASO s adult manual Living with ASD: Adolescence and Beyond will be launched at both the Hamilton conference and the ASO s AGM. Many personal accounts and stories of success from across Ontario are included. Prepared by Patricia Gallin, Adult Project Leader

-Talking Points- Autism is a complex developmental disability that typically appears during the first three years of life. It is the result of a neurological disorder that affects the functioning of the brain. Autism impacts the typical development of the brain in the areas of social interaction and communication skills. Adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or recreation activities. Based on recent studies by Canadian researchers, the prevalence rate of Autism Spectrum Disorder (ASD) is 1 in 165. In Ontario, there is an estimated 70,000 individuals with ASD. Adults with Autism remain among society s most vulnerable and poorly served people. The scarcity of properly trained staff and expertise on Autism means that people with autism are often denied integration and inclusive opportunities in communities where they live. Individuals in the autism spectrum need specialized services. Generic programs for people with developmental disabilities just won t do. Major needs of people with autism: the need to communicate wants and desires and to interact meaningfully with others; the need for highly structured, predictable and familiar surroundings; the need for meaningful work and recreational-leisure activities to give meaning to existence and provide a sense of accomplishment and being valued by others; the need for a safe and caring place of residence chosen from options along a continuum of residential services; the need for adequate and sensitive health and social services; and the need for advocates to ensure that rights and needs are respected and not violated, and that existing services are appropriate and adequate for each individual. Patches of programs and services are in place but need to be greatly enhanced, better coordinated, and more specialized to meet the needs of individuals with ASD and their families. What needs to happen is a cross-sector cooperation and collaboration among various ministries to achieve real wrap-around services for adults with ASD. Areas to focus on are: Transition planning and supports SSAH and other forms of individualized funding Housing options Service coordination Residential and Day supports Respite services School support programs Vocational training and income support Clinical support Support groups for individuals and their families Mandatory training for professionals in education, health, and developmental services sectors. Public awareness campaign Adults on the autism spectrum have potential and can live a full, meaningful life. It takes a village to make that possible. Prepared by

Writing To Your Member of Provincial Parliament Writing to your MPP is always a good first step in establishing contact. Please refer to the sample letter to help you get started. You can mail, fax, or email your letter. How to find out who is your MPP Call Elections Ontario, (416) 326-6300 or 1-800-677-8683 or visit www.electionsontario.on.ca Your MPP has an office at Queen s Park and in your riding. In this toolkit you will find a list of MPP s constituency offices contact information, including email addresses, or visit www.ontla.on.ca If you do not have access to a computer at home, please visit your local library or call the Community Relations staff at s provincial office: 416-246-9592 x 232. Follow Up Two or three weeks is usually the standard time it takes to get a response. If after this period you have not heard from your MPP s office, it is reasonable to follow up your letter with a phone call or an email. If English Is Not Your First Language Assistance to explain the information in this toolkit and in writing your letter is available through 211 Ontario. People from Toronto, Niagara, and South Simcoe can simply dial 211 and you will be connected to a community-based agency that speaks your language. For people outside the 211 calling areas, the 24-hour phone number to dial is (416) 397-4636 and 211 Ontario will connect you to your local community information centre. Prepared by

Your Name Here Street City, Ontario Postal Code Sample Letter Date: MPP Street City, Ontario Postal Code Re: Kids Grow Up! Adolescents and Adults On The Autism Spectrum Dear Mr/Ms/Hon Last Name, I am/we are parent(s) of an adolescent/adult living with Autism Spectrum Disorder. His/her name is. [Write something important about your son/daughter] As our representative at the Legislative Assembly of Ontario, I/we would like to bring to your attention the issues that impact my/our son/daughter and our family. These are the same issues that impact the lives of approximately 70,000 individuals on the autism spectrum and their families in Ontario today. The Provincial Government has embarked on Transforming Developmental Services in Ontario. Numerous announcements have been made and new initiatives have been introduced across our province. You are my/our voice at the Legislative Assembly. Strongly remind the government that the following areas require close attention. Concrete steps are needed now to ensure a continuum of sustainable and specialized services in communities wherever adults with ASD live: [choose your top three] Transition planning and supports SSAH and other forms of individualized funding Housing options Service coordination Residential supports and Day supports Respite services School support programs Vocational training and income support Clinical support Support groups for individuals and their families Mandatory training for professionals and front line staff in education, health, and developmental services sectors. Public awareness campaign As children become adults, the capacity of parents to care for them increasingly becomes more of a challenge. We need to make sure that our children have the appropriate supports that they need to live a safe, meaningful, and productive life. We need to make sure that appropriate supports are in place long before we reach the inevitable point where we cannot care for our family member anymore. In this time of your government s transformation initiatives, we need to make sure that adolescents and adults on the Autism Spectrum, like my/our [insert age] son/daughter are on the top of your government s list of priorities. I/We need your voice to help my/our family advocate for [name of son/daughter]. I/We look forward to your response and welcome the opportunity to meet with you to further discuss this matter. Thank you and best wishes. Yours truly, Name(s) of Parent(s) Phone Number Prepared by

Adult Working Group Contacts Howard Weinroth h.weinroth@sympatico.ca Patricia Gallins mail@autismsociety.on.ca Please write Attention: Patricia Gallins on the Subject Line Marilen Miguel Community Relations (416) 246-9592 ext. 232 marilen@autismsociety.on.ca