Nova Scotia’s Autism Through the Lifespan Report

The Nova Scotia Government formed an advisory committee to help it improve services to those affected by Autism Spectrum Disorder. The Autism Management Advisory Team (AMAT) included representatives from local autism organizations such as the Provincial Autism Centre, Autism Society Nova Scotia, Autism Society of Cape Breton, AnnapolisValley Autism Support Team, and three government departments: Education, Community Services and Health. Their excellent report which includes a list of 53 key recommendations can be viewed in its entirety here:

The recommendations in this document, with minor adjustments that would reflect the names of various organizations and departments in each province, are applicable nation-wide. Other countries such as Denmark have developed a National Autism Plan. Canada could do the same using this document as a model.

Here is a summary of the 53 recommendations:

1. An Implementation Committee should be struck by September 1, 2010, made up of members from the autism community and representatives from the departments of Health, Community Services, Education, Justice, and others when warranted.
2. Regional autism centres should be located and coordinate services in key areas of the province. These would be built upon already existing infrastructure and would enhance services already available. They would include a lending library and resources for families and parents. A navigator or case manager, who can offer the information and access to required services, would be available. This will offer seamless and “wraparound” services from childhood into adulthood within an inclusive system.
3. People with ASD should have regular health assessments that include gathering information on areas including but not limited to behavioural, emotional, and mental health issues; screening for medical conditions; nutritional issues; and motor, sensory, and perceptual difficulties. (These services would be offered through the regional autism centres.)
4. People with ASD and their families should have access to a wide range of health professionals/interdisciplinary health teams (e.g., psychiatrist, psychologist, social worker, occupational therapist, speech-language pathologist, behaviour analyst, behaviour interventionist, and related professionals based on family and individual needs.
5. The province should designate the positions of behavioural analysts and interventionists as job descriptions within the Department of Health and make these trained staff available across the province to support families and individuals.
6. All general practitioners should become knowledgeable in recognizing the features of autism. The Physician Toolkit (download from autismcentral.ca), a manual for medical doctors, should be available to all general practitioners across Nova Scotia.
7. Treatment/support plans should be comprehensive and include behavioural needs, educational interventions, psychosocial treatments, physical health needs, communication needs, environment, functional development, and skills for independent living.
8. Further explorations of crisis services for families and individuals with ASD should be investigated to determine if supports are appropriate, timely, and accessible.
9. A course on autism should be included as a mandatory part of training for all student medical professionals, including physicians, nurses, dentists, speech-language pathologists, occupational therapists, psychiatrists, and psychologists.
10. An autism training module should be developed and offered as a Continuing Medical Education (CME) credit to practicing medical professionals and for the Mental Health First Aid program.
11. An ASD Clinical Practice Guideline should be developed that addresses the needs across the lifespan. (A possible model to consider is the New Zealand Autism Spectrum Disorder Guideline; to view, click here.
12. An autism education and awareness campaign should be developed and carried out. It should target employers, the justice system, general practitioners, health care workers, educators, and the community at large. The Department of Health should take the lead.
13. Initial screening of ASD for all infants should take place at the 12-month, 18-month, and 24-month medical examination. Surveillance for ASD characteristics should be ongoing past 24 months.
14. If an ASD is suspected by the health-care provider, the child should be referred immediately for ASD screening and comprehensive medical testing should take place within one month. Diagnostic reports should be shared with the family in a timely manner.
15. Following an ASD diagnosis, treatment/intervention should start within three months.
16. Additional clinical psychologists with the appropriate training should be hired to shorten the diagnostic wait lists for school-aged children.
17. Further investigation should take place on identifying and standardizing a best practice assessment tool to diagnose adults with ASD, as well as training of related professionals to administer it.
18. Funding to the EIBI program should be increased so it can be made available to all families with a preschool-aged child diagnosed with ASD in the province of Nova Scotia.
19. Increased appropriate training opportunities should be made available to staff at daycares and early interventionists throughout the province.
20. A treatment plan should be created by the IFSP planning team and should include appropriate intensive intervention at the rate of 25 hours per week by ASD professionals.7 Services in French should be made available if needed.
21. The Department of Education should give all school boards targeted grants to support professional development and board-based initiatives in the area of autism. Grants should be increased and reviewed annually. Furthermore these grants should be increased to reflect the increased numbers of children in the public school system diagnosed with ASD.
22. The Department of Education should continue to fund the position of Autism Consultant for the province of Nova Scotia. This position would manage the autism strategy and provide the leadership in coordinating the professional development needs identified by school boards across the province.
23. All school boards in Nova Scotia should make sure that an autism specialist or consultant is a part of the staffing allocation to support the training needs and program planning teams in schools.
24. The staffing ratio for speech-language pathologists should be improved to offer additional staffing to all school boards. Occupational therapy should be available within regional school boards to help schools with the sensory needs of students with ASD.
25. The Department of Education should give targeted funding to each regional school board to support the position of Transition Facilitator. This position would work collaboratively with high schools, government departments, and community organizations to support successful transition out of public school.
26. An ongoing professional development focus on best practices in the area of autism education should be provided for all staff (including administrators, public school teachers and TAs, bus drivers, and staff at private schools) involved in the education of children with autism spectrum disorder.
27. School boards should be allotted targeted funding to be used for purchasing materials to support the programming needs of the children with autism spectrum disorder.
28. Nova Scotia’s colleges and universities should commit to offer post-secondary programming for students graduating from public schools with credits designated as IPP. Creation of additional seats in programs for students with IPPs is also recommended.
29. The Department of Education should make sure that each university in Nova Scotia offering an education degree offers a mandatory course in autism spectrum disorders to all students enrolled in education.
30. One university in Nova Scotia should become a leader in autism education. It should offer diplomas or degrees with specialization in autism similar to those offered in other provinces across Canada.
31. Staff at universities and community colleges should have opportunities for training in the area of ASD.
32. Criteria for the Department of Community Services’ Direct Family Support program should be reconsidered.  Specifically, the definition of “intellectual” disability and income testing as a basis for eligibility should be reviewed. Eligibility for this program should be based on the needs of the family and individual circumstances, making sure that families who could benefit the most from respite services are receiving funding.
33. A training toolkit for recruiting and retaining respite care workers in working with people with ASD should be developed. A list of required core competencies and experience for respite care workers to offer quality services to persons with ASD across the lifespan should be defined as part of the toolkit. Where regional respite programs exist, training should be given to respite workers specific to ASD.
34. Appropriate, community-based housing options should be available to all adults with ASD based on the needs and ability of the individual seeking support.
35. Appropriate, inclusive leisure/recreation programming specific to after-school and school breaks (Christmas break, March break, and summer vacation) for all age groups across the province should be developed and carried out.
36. Opportunities should be created for recreational/leisure programming for individuals with ASD 21 years and older.
37. A granting system should be created to meet the social and leisure programming needs of various autism organizations.
38. Targeted funding should be offered for recreation departments throughout the province to support recreation/leisure programs specifically designed for individuals with autism.
39. Training for parents and families should be developed and made available to help families to understand autism and their child. Effective training can be offered through the regional autism centres by improving access for families. Qualified professionals in various fields will be available to consult with families about challenging issues as they occur. This can be in the form of home visits, centre visits, email, and workshops to develop parenting skills in key strategies such as visual schedules, behaviour modification (functional analysis), and daily living skills.
40. Parents should receive funding to attend learning opportunities when they are offered in the province. Funds would be available through an application process.
41. Counselling services should be available to families who may be at risk of stress as a result of a diagnosis of autism.
42. A comprehensive employment model for people with ASD should be developed and carried out across the province. This model would include educating employers about issues and strengths of people with ASD in the workplace. This model could be delivered within cross-disability, established employment programs throughout the province, specifically in rural areas. Organizations and groups with ASD expertise, like the Provincial Autism Centre, could lead and develop the model.
43. Diversity training in the workplace should include ASD training.
44. Educational workshops and support groups, based on best practice approaches, should be developed for adults with ASD that focus on self-care, social skills, mental health, sexuality, and sensory issues.
45. Life skills training programs should be developed and carried out with a focus on budgeting, transportation, safety in the community, pre-employment skills, and wellness.
46. An increase in vocational and day program options should become available in rural and urban areas of the province.
47. The Department of Justice should strike a committee that will examine this safety need and develop a standard protocol for all first responders, police, fire fighters, paramedics, etc. to be used when involved with a person with autism.
48. First responders (911 operators, EHS personnel, fire fighter, search and rescue, and police) throughout Nova Scotia should receive autism education by trained professionals in dealing with emergencies and persons with autism.
49. An autism census should be conducted in the province to accurately account for all persons with autism spectrum disorder.
50. Nova Scotia should develop and carryout a voluntary autism registry directly fixed to the 911 system.
51. A provincial monitoring system for people with ASD who are at risk of wandering off should be explored.
52. The implementation team for the AMAT report should consider existing best practice models for programs and support currently being delivered by non-profit autism organizations throughout the province.
53. Autism organizations/groups should be included in the comprehensive service model proposed by the recommendation of the regional autism centres.