Contents
Question 1: What feedback do you have about the New Autism Program? (Pros & Cons)
Question 2: How should families use additional funding based on need?
Question 3: What role should the education system play in supporting students with Autism to have meaningful access to education?
Question 4 – How should health & social supports for children with Autism be better integrated

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Q1: What feedback do you have about the New Autism Program? (Pros & Cons)

Pros

  • More choice and service:
    More services covered; ability to chose different services, for example occupational therapy, other than ABA
  • If implemented well, extra assistance & supports to navigate system will be beneficial
  • Seems like there could be more regulation for services providers; depending on implementation, this could be positive
  • Good to reduce waitlists
  • Parents feel that they have been heard in sense of old system has wait list and it wasn’t working
  • Some parents would say an option of direct funding is a pro
  • A properly run provider list system will be helpful for parents.
  • OAP system over time will be baselines.
  • Got rid of income testing; funding not dependent on household income
  • It is raising awareness about autism

Cons

  • Waitlists and funding
  • Timelines around waitlists and budgets are delaying kids service
  • No new families as of Apr. 1st, 2019 have been added to the list to my knowledge
  • No wait list because they’re not growing the wait list
  • “I should be able to call and ask where I am on the wait list, but that contact does not exist”
  • A quantitative number should given to parents re: wait list so they no where they are
  • Financial implications for families is huge, still don’t know the $ value of service
  • Funding not consistent
  • Geared to therapy only, what about funding for education or electronic needs?

Communications and systems

  • System was already complicated, now add lack of information
  • Communication roll our was poor- scary for a lot of people, more stress
  • Still do not know details
  • received no info, or letter re: the new program
  • haven’t been told what funding would be
  • even for people receiving $5,000 (Passport), that is not enough for service needed
  • no service until Oct 2019
  • the goals are always short-term (6 month goals)
  • no advisory council appointed yet
  • Seemed like changes came with a lack of research or planning

Service Providers

  • Can’t hire service provider because funding is not secured
  • Service providers e.g. EA not staying in the trade due to job security
  • Caused lay offs in service providers – how does lay offs help the kids?
  • Service providers keep changing, kids need continuity with service providers, aka the need the same service provider to build a relationship

General feedback

  • Unclear if regulation for OAP services is coming and what it will look like
  • Haven’t recognized every child is different
  • Families moving because of changes
  • Lack of community approach
  • Lack of accountability
  • Not figuring out the root cause of autism rate being so high
  • No national autism strategy means that no investment now = more money later
  • children with autism will not become contributing and functioning adults in society. We will have to pay for them to be in assisted living.
  • No interim plan
  • Should be under the OHIP umbrella, you need a medical diagnosis to be declared autistic, so why isn’t it under OHIP?
  • What happens if a child is in Foster care? Does the money follow the child?

Other recommendations

  • Could add more focus on peer support, consultation
  • Expand services beyond ABA is good, should de-emphasize ABA as a solution• Autistic adults and parents should work together
  • As there are ongoing updates to psychiatry for a trauma informed approach, opportunity to add an autism informed approach/awareness
  • Ensuring medical systems are up to date and how autism presents across gender, race etc.
  • Should also treat people with autism for concurrent disorders
  • Need to look beyond the autism lens, medical, mental health
  • Must have supports for pathways for adults with autism
  • All supports end at 18, need to be expanded to 21
  • Government does not regulate the price of services. Previous $55/h, with no regulation, service providers can charge $110/hour.
  • Stricter accreditation for service providers, some service providers “have no qualifications; fraud”
  • Unqualified service providers recognize the lack of services, and take advantage of parent’s desperation
  • Contributions of people with autism to society.
  • Should have an annual review/feedback forum of the OAP to assess its effectiveness after every year

Q2: How should families use additional funding based on need?

  • Need a standardized, consistent assessment to determine amount of funding needed
  • Need more time put into assessments
  • Standardized assessment to be completed by a qualified team including the families, caregivers, educators and healthcare providers
  • Family should definitely be involved in the process
  • Current program not working to determine needs
  • Parents could prioritize which programs are best for their child/children
  • Need money to fund assessments
  • Have a list of services and therapies available and provide consistent costing throughout the province’
  • Bring back “family support workers”
  • Avoid using labels for autism ie: high functioning/low functioning
  • Consult adults with autism to gain insight and get feedback on their experiences
  • Funding should be determined by needs of individual and then reviewed regularly
  • Decide on how much money is needed based on diagnosis and the consensus of the assessment team
  • Community Support *great feedback from the Upper Grand School system group
  • Provide community support such as group activities for families with autistic children
  • Consult with families to determine needs
  • Give the community financial support based on needs and diagnosis’
  • Community members to consult with families re: their needs and offer support
  • Pool resources within a community to assist families
  • Ensure that mental health support systems are in place
  • *One person said to look at the 20/20 program in Newfoundland to see how this works

Feedback from Parents

  • Question itself is problematic, what amount are we talking about?

Therapies

  • Parent based, not ministry based
  • Flexibilities: professional, traditional, non-traditional
  • Regulated, reliable, consistent
  • ABA therapy will make a difference for speech and language
  • Regulated therapies – costs/credentials
  • Early intervention
  • Something FUN for my kid(s) -> not therapy based but normalized activities
  • Support teams to help with daily activities
  • Therapies that focus on social therapies and community engagement
  • Parent/caregiver training

Respite

  • Support teams to assist with daily routines
  • Lend an extra hand

Educational Systems/Schools

  • Money to go towards a variety of learning/educational environments to fit the needs of the child
  • School based therapies supervised by non-school board reps
  • No age limit on money
  • Funding investments in teachers/educators who successfully teach our children to learn
  • Educational learning environment should be individualized -> funding to support a variety of educational environments (inclusive, segregated, 1 on 1 specialized)
  • AFTER school programs: especially for parents/caregivers who work – ideally someone trained with a specialization in autism

Awareness

  • Educate community members about the nature of autism – neighbourhood project

Q3: What role should the education system play in supporting students with Autism to have meaningful access to education?

Common Themes

  • Increase resources; EA’s with specialized skills & training
  • Increase education and training for teachers and EA’s
  • Increase collaboration amongst all professionals and family
  • Increase choices
  • Take a holistic approach
  • Increase funding
  • More instruction for parents navigating the system
  • Awareness

Increase Resources

  • Need accountability following legislation
  • Principal’s discretion to have child stay home; document this and look at real problem
  • Must follow the education act; parents forced to pick up child
  • Need clarity between education and treatment; fewer treatment centres, Section 23 schools
  • Transition, how to bridge between treatment and schools
  • Need programs for kids who need treatment and not yet ready to be in school
  • Service resolution for one kid at a time (exists in Wellington)
  • Boards that are inclusive do not have sectional treatment programs to service students with significant needs
  • Treatment homes in community
  • A designated specialized group of professionals at each school

Increase Education and training for teachers and EAs

  • Quality education – ie. if [there is] ABA, need a full time EA with ABA training
  • Appropriately trained support staff in classroom
  • Therapists into schools; easier to access, [but] transportation is [a] barrier
  • Academic accommodations based on needs, not diagnosis
  • Pay attention to physical environment – lights, sounds
  • Teacher training about neurodiversity to better understand students
  • More EA’s with 2nd language training (French)
  • School to initiate the diagnosis, sooner they are diagnosed- sooner the supports can be applied for
  • Give teachers freedom to speak their opinion

Increase Collaboration amongst all professionals and family

  • Meaningful access is not just being in class – focus on strategies that may not be educational especially that fits needs of student supports
  • Resistance from school boards & providers; need collaborative agreement for third parties
  • Need consistency among schools; hard when families move
  • How can education system collaborate better with community service?
  • Collective agreements; professional practice; recognizing constraints

Increase choices

  • Choice to be in segregated classes or inclusionary
  • Have choices to participate with others
  • Choice of outings and extracurricular
  • Special needs classes need funds for extracurricular, social learning opportunities
  • Need flexibility about different placements
  • Schools are generic, a one size fits all doesn’t work for students with Autism

Holistic Approach

  • Team decision: family, school, community supports (OT, speech, mental health) address all needs, look at the whole child
  • Transitional supports – i.e. in summer, elementary school to secondary school; resources and staff focussed on transition

Increase Funding

  • Funds for staff and families and schools to collaborate and communicate
  • Lack of clarity of roles – school? Therapist? Ministry should clarify
  • Bring expertise to table – teacher can’t be expected to deliver therapy
  • Grey zone – what is scope of practice of teachers (sic); parents confused
  • Increased funding to service provider
  • Money needs to move with the child
  • More instruction for parents navigating the system
  • Families may not know all pieces of intervention; need improved communication; avoid silos of intervention

Awareness

  • Adults with ASD to speak to school and students
  • Have more inclusive attitude, avoid “them and us” attitude
  • More inclusion, inequality, pairing students with and without disabilities
  • Sociocultural lens to understand disability, not just medical model
  • Support for students dealing with bullying

Q4: How should health & social supports for children with Autism be better integrated?

Summary

  • Worry childhood budgets will put even more focus on autism diagnosis when more integration is needed.
  • More integration the better- meds may help at school, but interfere with their sleep
  • Focus on the individual, not autism diagnosis (behaviour is due to loneliness, not autism)
  • Parents need help navigating, especially between preschool, school, and adulthood.
  • Respite should be separate funding from treatment

Notes

  • This question is too vague
  • Focus on education (children need to be taught differently, as they learn differently)
  • Respite
  • Inclusivity
  • Needs more support in the school other than special education teachers, they are not a therapist nor should they be
  • Communication program for special needs kids
  • Assistance for new parents of autism that are not sure how or where to start
  • Programs to help families willing to assist each other- networking, support groups
  • Consistent service providers
  • Takes too long to fight for medical diagnosis, even after diagnosis, autism is not supported under OHIP like other health conditions requiring diagnosis
  • Some children cannot be insured as they have autism, insurers don’t want to insure children with autism
  • Speech Therapists should be able to medically diagnose autism, not just doctors
  • Need a coordinator/caseworker once children enter school system
  • Family doctors need to be more aware of autism
  • No guidance for parents to understand all the systems
  • Parents of autism is a full time job, parents don’t have time to work full time.
  • ESL for people that do not speak English
  • Give service providers more training like workshops
  • Had to find out programs available from friends, better communication from ministry
  • School system is inconsistent in their approach/help
  • Feeling lost in the system, new parents unsure how to navigate
  • Not enough support
  • Mental health is dismissed in our government, depression for example, is an extension of autism
  • Need to treat the whole individual, focus on behavior and education, and also need to integrate mental & physical health as well as social opportunities
  • Need autism advocates/caseworkers
  • Some individuals fall through the cracks, children in foster care don’t qualify for tax credits
  • Diagnosed late; diagnosed as adults; had to fight for diagnosis