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
Download an electronic copy of the report.
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