Position Statements 2016 It s Time

Transcription

1 Position Statements 2016 It s Time

2 Government services and supports for those affected by Autism are constantly under review and changing over time. This booklet was compiled in Fall/Winter To keep up to date on news related to autism services in our province, sign up for our Newsletter at and follow us on Facebook Autism Society of Newfoundland and Labrador and

3 Table of Contents Looking Ahead 1 About Us 3 Province-Wide Early Identification, Assessment and Diagnosis 5 Access to Therapeutic Services 7 Improvements to Early Intervention 9 A Needs-Based Model for the Education System 11 Employment Opportunity and Employment Equity 15 Residential Options 17 Access to Diagnosis, Mental Health Services and Therapies 19

4 Looking Ahead Our Position Statements Pre-School Province-Wide Early Identification, Assessment and Diagnosis Access to Therapeutic Services (OT, SLP) Improvements to Early Intervention School-Aged A Needs-Based Model for the Education System Adult Employment Opportunity and Employment Equity Residential Options Access to Diagnosis, Mental Health Services and Therapies Autism Society, Newfoundland Labrador Position Statements 2016

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6 About Us We are families, professionals, and persons with Autism Spectrum Disorder (ASD) 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 institutes to advance research on ASD We believe that what is best or most effective for a person with autism should be determined by people who are directly involved - the individuals with autism, when possible, and their caregivers. Our philosophy supports choice; we believe no single intervention benefits all individuals with autism. We provide information and education to assist families with decision-making rather than advocating for one particular theory or philosophy. Autism Society, Newfoundland Labrador Position Statements 2016

7 We work in partnership with regional health authorities, school boards, agencies serving those with disabilities, and the provincial government, to improve the lives of those affected by ASD. In keeping with our goal to advocate on behalf of those with autism and their families, ASNL regularly updates its position statements on challenging issues facing families and individuals with ASD. This booklet presents an overview of the obstacles to reaching their full potential. There is an urgent necessity for our Provincial Government to develop a comprehensive strategy to address the needs of Newfoundlanders and Labradorians with ASD. It is time that government departments work together rather than in isolation to address issues related to early identification, diagnosis, intervention, education, mental health, housing, and employment. It is time our province respond to the huge challenges faced by Newfoundlanders and Labradorians with ASD and their families. 4

8 Province-Wide Early Identification, Assessment and Diagnosis Overview Early identification and intervention is key to reaching development outcomes for many individuals with ASD. Far too many families, health professionals and educators still do not recognize the early signs of ASD. Wait times for diagnosis at the Janeway have recently been reduced to 6 months. Unfortunately, this is not the case throughout Newfoundland and Labrador. Families living outside the Eastern Health Regional Authority continue to experience long wait times for diagnosis. This results in families having to travel away from home, usually outside the province, to receive a diagnosis more quickly. It places a financial burden on the family. Our Position It s time that all families, in urban and rural communities, receive a diagnosis within 6 months. Lengthy delay for a diagnosis postpones intervention and therapy. Research indicates that delaying therapy results in poorer outcomes. It s time our health professionals, educators and the public better recognize early signs of ASD. Autism Society, Newfoundland Labrador Position Statements 2016

9 Recommendations Wait Times for Assessment and Diagnosis Automatic screening of all children before 36 months. Establish 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. When wait list times exceed the standard wait time of 6 months, families should have an option to seek the diagnosis outside the province with costs paid by the province, as with other disabilities and specialized diagnoses. Department of Health should initiate a Public Information Campaign about early signs of ASD. Implement Autism Society NL s previously submitted Continuing Professional Development for Healthcare Practitioners about Autism Spectrum Disorder in Newfoundland and Labrador (2012) at the earliest opportunity. Position Statements 2016 Pre-School 6

10 Access to Therapeutic Services Overview Early intervention has been proven to significantly improve outcomes. Additional resources are needed to provide timely quality care for all children who need these services (e.g. OT and SLP), in both rural and urban regions. With the increasing demand for diagnostic assessments, acceptable wait times will become more challenging. Occupational Therapists focus on an individual s ability to participate in daily occupations, including self-care routines, leisure activities and school and/or work-related tasks. OTs identify appropriate strategies that help individuals with ASD become more independent. Speech-Language Pathologists assess speech, language, and communication skills and provide services to help with articulation and intelligibility of speech, the understanding and use of language, conversational skills and much more. They also work to adapt Augmentative and Alternative Communication (AAC) for individuals who may have limited or no speech. Recent statistics indicate the current wait list at The Janeway Children s Hospital to access an OT for a child with autism is 16 months. Wait lists for outreach OT in Gander, Grand-Falls, and Corner Brook are less than 10 months and OT services are beginning in Conception Bay North and Clarenville. Wait times for SLP services at the Janeway are 10 months or less. Autism Society, Newfoundland Labrador Position Statements 2016

11 Wait times for SLP in Central Health are 12 months, in Western Health 10.5 months and in Labrador 3 months. Private Occupational and Speech Therapies are available to those with financial capability. Waitlists and expensive private therapy put children whose families do not have adequate finances at a disadvantage. This has created a two-tiered health care system for those with autism. Our Position It s time for those with ASD to have timely access to OT and SLP following diagnosis. Both are essential to enabling individuals to reach their full potential by developing skills necessary for future success. Newfoundland & Labrador Regional Health Authorities should increase the number of specialists offering OT and SLP to reduce any wait lists to a level not exceeding three months after diagnosis. In situations where families are paying for private services, government should provide financial support directly or through tax credits. Recommendations Actively recruit Speech Language Pathologists and Occupational Therapists who specialize in autism. The provincial government should provide educational grants to help students obtain certification if they are interested in pursuing careers in Speech Language Pathology and Occupational Therapy. Provide OT services in schools. When individuals must seek private services, government should provide financial support. Position Statements 2016 Pre-School 8

12 Improvements to Early Intervention Overview Applied Behaviour Analysis (ABA) is one of the leading researchbased therapy options for individuals with ASD. ABA Therapy is a behavioural and skill teaching intervention program designed to assist the child in meeting targeted developmental goals. When a child is diagnosed with autism in Newfoundland and Labrador, s/he immediately becomes eligible to participate in the ABA 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 Families are responsible for finding and hiring an ABA home therapist. Individuals interested in working as ABA home therapists must secure employment prior to being able to complete the three-day ABA home therapist training. This results in potential therapists having difficulty securing employment due to their lack of training. Yet, they cannot receive training until employment is secured. There are issues with therapist turnover in our province. This high turnover rate is stressful for families and can be detrimental to a child s progress. Autism Society, Newfoundland Labrador Position Statements 2016

13 Our Position It s time challenges presented with this program be addressed by the Government of Newfoundland and Labrador. It is the main treatment option currently funded; hiring procedures need to be reviewed, wages need to be increased and training needs to be more extensive to improve the level of professionalism and quality of service provided by the intervention programs. Recommendations Any professional review of the current Early Intervention Program should be done in consultation with families and other key stakeholders to identify strengths and weaknesses, and make recommendations for improvement. Those in positions of child management and behaviour management, and the senior therapist, should be encouraged to attain their Board Certification in Behaviour Analysis (BCBA). Assess training, certification, remuneration and opportunity for career advancement of Home Therapists to assist with retention. Adopt an accreditation process for Behavioural Management Specialists similar to the nationally accepted standard of Board Certified Behaviour Analysts to ensure a minimum standard of expertise for service delivery in this province. Position Statements 2016 Pre-School 10

14 A Needs-Based Model for the Education System Overview The Schools Act is very clear about the rights of children under 16 to an education, regardless of their needs. Education is a right but for many students the current model is not working. The school system can be challenging for families to navigate, particularly families who have children with an autism diagnosis. The classroom can be overwhelming for teachers too, when they do not have the supports and training they need to help these students succeed. Our Position It s time our education system was needs-based. The inclusive classroom is a wonderful practice in theory unfortunately it s not working for many students. There are four key areas that need to be addressed to improve the education experience for students with ASD and for the educators working with them. Autism Society, Newfoundland Labrador Position Statements 2016

15 1. Student Assistant Services: Student Assistants (SA) do not have appropriate training or responsibility. They are primarily in the classroom to help with behavioural challenges, toileting, etc. SAs helping children with an autism diagnosis need specific training for the issues they are helping children cope with, such as anxiety, sensory processing challenges and work pace. 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 and structure. Allocation criteria are exclusionary and must be needs-based. Additional need has to mean additional support! 2. Occupational Therapy: From classroom design, visual instructions, modified activities, fidget toys, and even clothing adaptations, OTs have a large tool box that can help teachers and parents build a successful educational experience for students. Providing Occupational Therapy in schools is a critical component in the realization of a successful inclusive schools model. 3. Transition Planning: All students require a transition plan that should begin when a student enters school. This plan should include goals and milestones that will be used to prepare the educational services needed for a successful transition through school and into adulthood. 4. Professional Development: Educators need more training in autism. This training needs to take place pre-service before educator s graduate with their degrees. Best practices are constantly evolving and our educators need to be provided with the opportunity to expand their knowledge throughout their career. There needs to be a comprehensive in-service action plan for effective training of all educators, student assistants and support staff already working in the field. Position Statements 2016 Pre-School 12

16 Recommendations Formally review the student assistant allocation model and criteria. Provide occupational therapy services in the schools. Transition planning for adulthood be implemented in Grade 9 with very clear milestone markers developed to help guide future planning. Implement regulations to ensure accountability as it relates to IEP/ISSP meetings and transition planning. More accessible professional development for educators regarding exceptionalities and newly evolving best practices. Memorial University Faculty of Education ensure two compulsory training courses during pre-service training for all educators in K-12 Public Education system. Autism Society, Newfoundland Labrador Position Statements 2016

17 Position Statements 2016 School-Aged 14

18 Employment Opportunity and Employment Equity Overview Persons with ASD are one of the most under-utilized within our population with regards to employment. Studies show that those with autism have the highest rates of unemployment and that only 33% of adults on the spectrum work compared to 60% of other disabled adults. Our Position It s time for all people with ASD, regardless of the level of function, to have appropriate opportunity to earn a living through paid employment. Employment opportunities need to be meaningful and appropriate and employmentrelated supports should be made available. Employment opportunities and compensation rates should be balanced and equivalent for persons with disabilities. Autism Society, Newfoundland Labrador Position Statements 2016

19 Recommendations Encourage all businesses to employ a minimum of 10% of its staff with a disability. Government must work more closely with community and business to better spread public awareness of the business case for hiring inclusively. Government should work with postsecondary institutions to ensure inclusive hiring is a mandatory topic covered in all business and Human Resource programs with a goal of improving awareness and understanding in the workplace. Position Statements 2016 Adult 16

20 Residential Options Overview Our province is experiencing a crisis in housing; residential housing choices for people with disabilities, including those with ASD, are limited. Individuals with autism across this province are often kept at home. Parents and caregivers are apprehensive about allowing their children to live on their own, as the individual s needs can be too great and expensive. This presents a barrier to a life of independence. Autism Society, Newfoundland Labrador Position Statements 2016

21 Our Position It s time for a comprehensive provincial review of residential options for adults with autism that would identify practical solutions to more adequately house the population based on specific needs related to their diagnosis. Recommendations The Department of Health and Community Services undertake a comprehensive provincial review of residential options for adults with autism. The Department of Health and Community Services initiate a cost-benefit analysis of existing housing options, inclusive of staying at home, Cooperative Living Arrangements, Individualized Living Arrangements, Alternate Family Care Homes, Assisted Living Arrangements and institutional placements (long term care facilities, Waterford Hospital, and Personal Care Homes). Ensure a needs-based system with a wider range of appropriate assessment and early intervention, transitional, and permanent residential placements based on the individual needs of adults affected by adaptive functionality. Position Statements 2016 Adult 18

22 Access to Diagnosis, Mental Health Services and Therapies Overview Services for adults with ASD remain practically non-existent. It is difficult for adults with ASD to obtain services from psychiatry and other allied health professionals. There is no capacity within the childcare system to do formal assessment and diagnose ASD in adults and there are no adult specialists trained to do such assessments. A growing body of evidence suggests that mental health problems in individuals with ASD are common, in particular depression and anxiety. Mental health professionals require specific skills to identify and treat mental illness in individuals with ASD. A pilot adult clinic, The Forest Road Developmental Clinic, began in late This clinic is a consult clinic only and receives children from the Janeway who are transitioning into adulthood. Adults seeking diagnosis still have nowhere to go to be assessed and no formal clinic to receive intervention services. Further, adults receiving a diagnosis do not qualify for government funded ABA therapy. Our Position It s time for our province to provide medical services for adults on the spectrum. Adult clinics should be established within the four regional health authorities for assessment and diagnosis. Practicing mental health professionals should receive specialized training in identifying and treating mental health problems in individuals with autism. Funding should be put in place to support adults on the spectrum seeking intervention therapies. Autism Society, Newfoundland Labrador Position Statements 2016

23 Recommendations Adults be included in a central intake process for individuals diagnosed with ASD. Establish adult clinics in each Regional Health Authority for adults to be assessed and diagnosed in a timely manner. 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 2016 Adult 20

24 ASNL Headquarters 70 Clinch Crescent P.O. Box St. John s, NL A1B 4G8 T (709) F (709) ASNL Eastern Regional Office 105 Manitoba Drive P.O. Box 9194 Clarenville, NL A5A 2C2 T (709) ASNL South Central Regional Office 7 High Street 2nd Floor (Physical) P.O. Box 133 Grand Falls-Windsor, NL A2A 2J4 T (709) F (709) ASNL Western Regional Office 40 Main Street Corner Brook, NL A2H 1C3 T (709)