Position Statements Position Statements 2018 Lifelong

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1 Position Statements 2018 Position Statements 2018 Lifelong 1

2 Autism Society, Newfoundland & Labrador Position Statements 2018

3 We are families, professionals, and persons with Autism Spectrum Disorder working together to: educate the community about autism and raise awareness provide quality programming provide guidance, support and resources to persons with autism and their families through all life stages through outreach seek improved programs and services provided by healthcare and education, on behalf of those with autism and their families, through advocacy partner with educational institutions to advance autism research Autism Society, Newfoundland & Labrador acknowledges there are preferences with regards to person-first and identity first language. Positions outlined in this publication are created in the hope that those who see a persons on the spectrum, persons with autism and/or autistic can relate to the issues and recommendations provided. Keep up to date on the latest from Autism Society, Newfoundland & Labrador by following us online: AutismSocietyNL Position Statements 2018 About Us 3

4 Advocacy Advocating for improved supports and services for those with autism and their families is an important part of what we do. Although the landscape of autism services has changed tremendously in the last decade, there is still a long way to go. As children age, families are presented with new challenges and our role is to be sure their concerns are understood and met with services and supports that reflect individualized differences, needs and preferences. Through our advocacy, we aim to influence the community, government, businesses, and organizations to adapt policies, practices and attitudes that consider the needs of those with autism. When our last Position Statement Booklet was created in , we noted the urgency for our Provincial Government to develop a comprehensive strategy to address the needs of Newfoundlanders and Labradorians with Autism Spectrum Disorder. This has not changed. Every two years we update our Position Statement Booklet to reflect the concerns we hear from the community and provide recommendations to improve the lives of all those affected by Autism Spectrum Disorder. Since our last publication, the Provincial Government has committed to a comprehensive Autism Action Plan. For years we have advocated that government must leave silos behind and work together for improved services and supports for families. The umbrella issue to those outlined in this booklet is improved navigation and communication from government departments offering services to those on the autism spectrum. The information families and individuals need must be transparent and centralized. The Implementation of a Provincial Autism Services 4 Autism Society, Newfoundland & Labrador Position Statements 2018

5 Office would be a huge improvement. Families and people on the spectrum need assistance with navigating the system; particularly those who receive a late diagnosis. For those who enter the system during pediatric years, there are several entry points: through diagnosis, early intervention, therapy and even the education system. For an adult seeking a diagnosis and support, it is unclear where to begin or who to call. There are many concerns and challenges that individuals and families are facing; our hope is this publication touches the broad Issues That Matter. Services and supports change over time; we encourage anyone reading this who wishes to draw our attention to issues that are missing, or new issues that have come to light since this publication, to contact us. Position Statements 2018 Advocacy 5

6 Our Position LIFELONG Statements Removal of IQ70 Continuity of Care Access to Mental Health Services Timely Assessment and Diagnosis PRE-SCHOOL 18-Month Screening, Timely Referral and Early Identification Access to Therapeutic Services & Interventions Improvements to the Early Intervention Program SCHOOL-AGED Transitioning into School, Between Grades and/or Schools, and Out of School Public School Supports Professional Development for Educators and Support Staff ADULT Employment Equity Post-Secondary Education Supports Residential Options 6 Autism Society, Newfoundland & Labrador Position Statements 2018

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8 Autism Society, Newfoundland & Labrador Position Statements 2018

9 LIFELONG Removal of IQ70 Autism Society, Newfoundland & Labrador believes the current practice of using a person s IQ score as a criterion for determining the need for support services and programs is exclusionary and discriminatory. For many families and people diagnosed with autism, access to vital services depends on whether the person has an IQ score below 70. This has proven to be a barrier for those requiring specific supports. Many people with autism require supports related to their autism diagnosis, regardless of whether or not they have an intellectual disability (IQ<70). Autism is a social, sensory and communicative disorder with many individuals having average to above average intellectual ability and a very unique set of abilities and challenges. There must be an assessment of a person s adaptive functioning, that refers to an individual s typical performance across various domains of daily life, to determine support requirements. IQ is not a good identifier of a person s ability to live as independently as possible; a person s needs should be the primary determinant when qualifying for services. RECOMMENDATIONS: Replace the use of an IQ score with the use of an adaptive functioning assessment to determine service needs (including retroactively for those who have previously been denied). Provide life skills programming specifically for those with autism. Provide/fund autism training to relevant service providers. 9

10 LIFELONG Continuity of Care Autism Society, Newfoundland & Labrador believes the inconsistencies that exist across regional service providers and across life stages is unacceptable. Autism is a lifelong diagnosis and services must reflect that reality. Navigating services must be more consistent and straightforward. Continuity of care across all ages and regions of the province is of the utmost importance to the autism community. The development of a provincial autism services model must ensure seamless service delivery across the lifespan. This would include continuity of care across all health and education services during early years, efficient transition of services from pediatric to adult health systems, and multi-disciplinary coordination of care for adult health services. In our Position Statement Survey, close to 90% of respondents rated consistency in services across all Regional Health Authorities as very important to extremely important. RECOMMENDATIONS: Fully fund or provide social skills interventions and life skills programming for adults on the autism spectrum. Implement a Provincial Autism Services Office. Department of Education and Early Childhood Development and Department of Health and Community Services develop a provincial autism health services 10 Autism Society, Newfoundland & Labrador Position Statements 2018

11 model, situated within one government department, to ensure seamless service delivery to schools, continuity of care, and year round access for individuals and families. It should include: community nursing, speech/language pathology, psychology, occupational therapy, residential supports, supportive employment, and social work (adapted from Premier s Task Force on Education, Recommendation #10). Standardize practice between Regional Health Authorities and provide written documentation outlining policies and procedures for services/care for persons with autism from birth to old age. Prioritize high quality communications and transparency in new service development and policy change throughout the implementation of the Autism Action Plan. When he turned 18, everything stopped! Autism doesn t stop at age 18. I have a 21-year-old high school dropout I have to care for the rest of my life. I worry every single day what will become of him when I am gone. Individuals and families are cast aside once they finish in the school system. Government and organizations do a lot, but are doing a very poor job in that area. Position Statements 2018 Lifelong 11

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13 LIFELONG Access to Mental Health Services Autism Society, Newfoundland & Labrador believes the lack of mental health services for people with autism is unacceptable. A focus on training and education for mental health service providers is essential. Responses to our recent Position Statement Survey indicated that mental health was the most important concern for adults with autism. Practicing mental health professionals should receive specialized training in identifying and treating mental health conditions in individuals with autism of all ages. Over 70% of children and adults with autism are impacted by at least one mental health condition in many cases even more. The need for these services to be appropriate and accessible for those on the spectrum is dire. RECOMMENDATIONS: Increase professional capacity to meet the mental health needs of individuals with autism, and other related disabilities, across the lifespan through a community-based outpatient program in association with the proposed expansion of adult clinics. Implement Autism Society NL s previously submitted Continuing Professional Development for Healthcare Practitioners about Autism Spectrum Disorder in Newfoundland and Labrador (2012) at earliest opportunity. Position Statements 2018 Lifelong 13

14 LIFELONG Timely Assessment and Diagnosis Autism Society, Newfoundland & Labrador believes adequate resources must be allocated to ensure wait times do not negatively impact access to services and intervention outcomes. Wait times for assessment and diagnosis in NL continue to climb, with some families waiting upwards of 18 months. Many of those on a waitlist for assessment with their Regional Health Authority make the choice to seek a private diagnosis, some paying for this service out of pocket. Of those who responded to our Position Statement Survey, over 60% knew of someone who sought a private diagnosis. A pilot adult clinic began in late 2015 as a consult clinic only and receives children from the Janeway who are transitioning into the adult system. Adults seeking diagnosis still have nowhere to be assessed and no formal clinic to receive intervention services. Services and supports for adults on the spectrum need to be provided as soon as possible. Capacity for assessment, diagnosis, and supports must become a reality in all four Regional Health Authorities in the province. Individuals across the province must be assessed within 3 months of referral. Lengthy delay for a diagnosis postpones intervention and access to services. Research indicates that delaying therapy can result in poorer outcomes for those on the spectrum. 14 Autism Society, Newfoundland & Labrador Position Statements 2018

15 RECOMMENDATIONS: Establish adult clinics in each Regional Health Authority for adults to be assessed and diagnosed in a timely manner. Create opportunities for more Health Care Professionals to be trained in the use of the Autism Diagnostic Observation Schedule (ADOS). Implement ADOS teams in the four Regional Health Authorities. Allocate resources to ensure wait times for diagnosis (of any age) do not exceed 3 months. Position Statements 2018 Lifelong 15

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17 PRE-SCHOOL 18-Month Screening, Timely Referral and Early Identification Autism Society, Newfoundland & Labrador believes early identification is paramount to the outcomes for individuals with autism and, therefore, evidence-based screening and surveillance practices must be implemented provincially. Early identification is the key to any health-related intervention. This is particularly important when it comes to the development of a child with autism when evidence supports early intervention as one of the most critical factors affecting outcomes. Additional tools for developmental screening should occur for all children at the 18-month health check to ensure those flagged for early signs of ASD receive timely and appropriate referrals. The pre-school health check is simply too late. RECOMMENDATIONS: Add developmental screening for all children at the 18-month health check, to bridge the gap between 12 months and preschool. Department of Health and Community Services initiate a Public Information Campaign about early signs of ASD. Position Statements 2018 Lifelong 17

18 PRE-SCHOOL Access to Therapeutic Services & Interventions Autism Society, Newfoundland & Labrador believes individuals have a right to timely access to therapeutic services after an autism diagnosis; services that can have an impact on lifelong skill development. Timely access to therapeutic services, specifically Occupational Therapy (OT) and Speech Language Pathology (SLP), is incredibly important for those with autism. Occupational Therapy addresses a combination of cognitive, physical and motor skills associated with individuals gaining age-appropriate independence and participating more fully in life. For a person with autism, this may include appropriate play or leisure, learning, and self-care skills. Speech Language Pathology helps individuals communicate in more useful and functional ways by coordinating the mechanics of speech with the meaning and social use of language. Some individuals with autism do not speak, while others speak well but have difficulty using conversational speech and/or understanding the nuances of language in a social context. Waitlists and accessibility for these services are inconsistent across the province. As a result, families are seeking private therapy during the waiting period which puts those with financial restrictions at a disadvantage. OT and SLP services are essential to enabling individuals to reach their full potential. Regional Health Authorities should increase the number of specialists offering OT and SLP services to ensure waitlists do not exceed three months after diagnosis. 18 Autism Society, Newfoundland & Labrador Position Statements 2018

19 RECOMMENDATIONS: Actively recruit Speech Language Pathologists and Occupational Therapists who specialize in autism to ensure waitlists do not exceed three months after diagnosis. Provide educational grants to help students obtain certification if they are interested in pursuing careers in Speech Language Pathology and Occupational Therapy. Integrate OT services into the education system. From familial experience, accessing diagnostic services and support therapy services is extremely difficult if you don t live in/near a major centre. The therapy services are especially difficult as therapists cannot get to clients often enough to assist them consistently, sometimes not allowing younger children to attend school when they are at the age to begin, or forcing the children to stay at home due to symptom severity. Position Statements 2018 Pre-school 19

20 PRE-SCHOOL Improvements to the Early Intervention Program Autism Society, Newfoundland & Labrador believes the Applied Behavioural Analysis Program, the primary early intervention program provided by the Department of Health and Community Services, requires improvements to better meet the needs of families. When a child is diagnosed with autism in Newfoundland & Labrador, s/he immediately becomes eligible to participate in the Applied Behavioral Analysis Program. Government funds 30 hours per week prior to Kindergarten, 15 hours per week during the kindergarten year, and 10 hours per week in each of Grades There is no wait time to begin early intervention as we see in other provinces, however, families are responsible for finding, hiring, and managing their own ABA home therapist. Individuals interested in becoming a home therapist must secure employment prior to completing three days of training; they cannot receive training until they have been hired by a family. There are challenges with therapist recruitment and turnover in our province, which causes additional stress and uncertainty for families and, more importantly, can be detrimental to a child s progress. RECOMMENDATIONS: A review of the current Early Intervention Program should be carried out, in consultation with families and other key stakeholders, to identify strengths and weaknesses and make recommendations for improvement. Professionals overseeing ABA programs should be encouraged to attain their Board Certification in Behaviour Analysis (BCBA) designation. 20 Autism Society, Newfoundland & Labrador Position Statements 2018

21 Assess training, certification, remuneration and opportunity for career advancement of home therapists to assist with retention. Adopt an accreditation process for Behavioural Management Specialists that ensures a minimum standard of expertise for service delivery in this province. Position Statements 2018 Pre-school 21

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23 SCHOOL-AGED Transitioning into School, Between Grades and/or Schools, and Out of School Autism Society, Newfoundland & Labrador believes students with autism require stronger transition supports as they move into, throughout, and beyond the school system. As part of their diagnosis, individuals with autism can find change and unpredictability very difficult. Compounded with the social communication and sensory demands of school, it must be recognized that students with autism require specific support through significant changes (ie. into kindergarten, between grades/schools, and out of school). Consistency of supports is crucial to bridge students through a transition period and this must be made a priority for students with autism. RECOMMENDATIONS: Implement regulations to ensure accountability as it relates to IEP/ISSP meetings. Establish standard procedures for transitioning students who are accessing particular supports. Department of Education and Early Childhood Development develop and implement a protocol to ensure a fluid and effective transfer of knowledge and transition of services for children, especially those receiving early intervention services, moving from early years programs to kindergarten. (The Premier s Task Force on Improving Educational Outcomes, Recommendation #63) Position Statements 2018 Lifelong 23

24 SCHOOL-AGED Public School Supports Autism Society, Newfoundland & Labrador believes students with autism need appropriate and sufficient supports to thrive in the learning environment. Support resources in our schools are not adequately meeting the needs of those with autism. For children whose needs are not being met with appropriate supports and services, school is completely inaccessible and children are unable to attend, putting stress on families to provide care. There are a number of key areas of concern: Student Assistants (SA) do not have appropriate training or responsibility. They are primarily in the classroom to help with behavioural challenges, toileting, etc. SA s helping children with autism need specific training for the issues they are helping children cope with, such as anxiety, sensory processing challenges and executive functioning. SA assignments change too frequently; this is a major concern for children with autism who have social and communication difficulties as well a strong need for routine, structure, and predictability. Providing Occupational Therapy in schools is a critical component in the realization of a successful inclusion model. From classroom design, visual instructions, modified activities, sensory considerations, and even clothing adaptations, OT s have a unique toolbox that can help teachers and parents build a successful educational experience for their students. 24 Autism Society, Newfoundland & Labrador Position Statements 2018

25 If the needs of individual students cannot be met with adequate supports in the school setting, there is a duty to continue providing them with an education in an alternate setting and with the appropriate supports they require. RECOMMENDATIONS: Introduce a second level of student/teacher support, Instructional Assistants, with levels of post-secondary education appropriate to the role and create a new model of Student Assistant that considers familiarity and consistency in student assignment. (adapted from The Premier s Task Force on Improving Educational Outcomes, Recommendation #7) Provide occupational therapy services in schools. Implement regulations to ensure accountability as it relates to IEP/ISSP meetings, acknowledging that supports are required for students who are struggling as well as those who are gifted (through enrichment, etc.). Department of Education and Early Childhood Development and Department of Health and Community Services review the capacity of social workers, psychologists, occupational therapists, speech language pathologist and community nurses to ensure adequate services to students and families. (adapted from The Premier s Task Force on Improving Educational Outcomes, Recommendation #11) Position Statements 2018 School-aged 25

26 SCHOOL-AGED Professional Development for Educators & Support Staff Autism Society, Newfoundland & Labrador believes educators and support staff have a right to adequate education that prepares them for today s inclusive classroom. Educators and support staff are overwhelmed in today s diverse classroom and lack competencies and training in specific areas of need. This is a barrier that prevents students from reaching their full potential. Educator training must be improved first in pre-service training while educators are completing their university requirements for teaching. Secondly, in-service training or professional development must continue throughout their career to keep pace with emerging practices and policies. Best practices are constantly evolving and our educators need to be provided with the opportunity to continuously expand their knowledge. RECOMMENDATIONS: The Faculty of Education at Memorial University include two courses on exceptionalities and modules on responding to student behaviour in initial teacher education programs. These courses must include sufficient content on Autism Spectrum Disorder specifically. (adapted from The Premier s Task Force on Improving Educational Outcomes, Recommendation #15) Implement a professional development policy statement similar to those developed in other Canadian provinces (ie. Prince Edward Island, Ontario, Alberta and British Columbia). 26 Autism Society, Newfoundland & Labrador Position Statements 2018

27 Department of Education and Early Childhood Development adopt New Brunswick s model of department-led professional learning with at least one full day devoted exclusively to behaviour annually, supported by ongoing web-based learning opportunities. (adapted from The Premier s Task Force on Improving Educational Outcomes, Recommendation #5) Provide professional development in subject areas where teachers need support; professional development offerings need to be relevant and collaborative. Position Statements 2018 School-aged 27

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29 ADULT Supportive Employment & Employment Equity Autism Society, Newfoundland & Labrador believes all those on the autism spectrum, with a goal of employment, should have the opportunity to obtain and maintain real work for real pay. For those with autism, obtaining and keeping a job can be a real challenge. Many individuals with autism have the skills and desire to work but because of challenges related to socialization, communication or sensory processing differences, are unable to connect with employment. Improving this reality has two components: 1) providing skill development opportunities with the goal of transitioning individuals to employment, and 2) education and support to employers about autism, accommodations and the business case for inclusive hiring. RECOMMENDATIONS: Government must work closely within their offices, the community, and industry to increase understanding of the importance of inclusive hiring practices and the value of a diverse workforce. Department of Advanced Education, Skills and Labour supportive employment offices across the province must stop using IQ70 as a criteria for service provision. Provincial and Federal Accessibility Legislation needs to consider sensory processing challenges in the built environment. Flexible work arrangements, that still meet job demands, need to be more readily accessible to better meet the needs of a diverse workforce. Position Statements 2018 Lifelong 29

30 ADULT Post-Secondary Education Supports Autism Society, Newfoundland & Labrador believes institutions of higher learning should have the appropriate understanding and support services available to ensure that academically-capable students can be successful in their environments. Many people with autism have the desire to pursue higher education. While the number of students with autism attending post-secondary institutions continues to increase, students with autism can face a range of challenges with this transition. There are greater social, communication, and sensory processing demands in the postsecondary environment and students who have the appropriate supports can and will thrive. Post-secondary institutions in our province must align their staff training and support services to become better-equipped to serve diverse learners, particularly those with autism. RECOMMENDATIONS: A specific transition tool be developed to bridge students with autism between high schools and post-secondary institutions. Sensory processing challenges should be considered in institution, curriculum and classroom design. Higher education instructors and student services staff should receive basic education in the unique needs of students with autism. 30 Autism Society, Newfoundland & Labrador Position Statements 2018

31 Curriculum and instruction should align with principles of Universal Design to increase accessibility for all learners. A concerted effort put on increasing autism understanding and awareness across all campus domains to create a more accepting environment for students with autism. Position Statements 2018 Adult 31

32 ADULT Residential Options Autism Society, Newfoundland & Labrador believes adults with autism should have access to residential options that consider their individualized needs and preferences, while keeping meaningful connections to their community a priority. The needs of those with autism need to be better understood and considered within existing residential frameworks. As parents age their number one concern for their sons and daughters is what will happen to them when they are no longer able to care for them. It is a huge concern, one that requires the attention of government to find real solutions. People with autism vary in their need for supports related to housing and adult living. Some can live independently, others require assistance with daily living tasks, and some may need intensive, 24-hour supportive care. As government moves forward with improvements to all residential and community supports, the unique needs of the autism community must be considered. RECOMMENDATIONS: Department of Health and Community Services undertake a comprehensive review of residential options for adults with autism. The system must be needs-based (according to individuals adaptive functioning), with a wider range of assessments and supports for both transitional and permanent residential placements. Increase autism training and education for professionals working in residential support services. 32 Autism Society, Newfoundland & Labrador Position Statements 2018

33 I have had so many challenges as my child is getting older and I cannot find solutions. What happens when parents, now often the major supports for adults with ASD, age and die? Many of us live in fear. Position Statements 2018 Adult 33

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35 A special thank you to Kaeleigh Fitzgerald Photography for capturing these special moments at our Eastern Region's 2018 Summer Camp. Thank you to Lauren Pearcey Photography for capturing the images for the 'adult' issues as part of our 2018 Transitions Program.

36 ASNL Headquarters 70 Clinch Crescent P.O. Box 14078, St. John s, NL A1B 4G8 T F ASNL Eastern Regional Office 105 Manitoba Drive P.O. Box 9194, Clarenville, NL A5A 2C2 T ASNL South Central Regional Office 7 High Street 2nd Floor (Physical) P.O. Box 133, Grand Falls-Windsor, NL A2A 2J4 T F ASNL Western Regional Office 79 Broadway Corner Brook, NL A2H 4E1 T General Inquiries info@autism.nf.net