May 1st Telephone Town Hall — A live-tweet recap

For anyone who missed the first telephone town hall, my wife Kerry Monaghan was live-tweeting, and here’s a collection of those tweets.

• OAP Consultation Time. In queue for the first of the 4 Tele-Townhalls. Will be live tweeting content for those who happen to be interested… Should be fun! Let’s get started.
• Independent Moderator — Non-Partisan and Neutral. Representing the 3 Ministries. 5 topics to cover. 1. How services and supports through the OAP helping learning and development of our kiddos. We are asked if we’d like to comment on the topic. *Plugs online Survey*
• 2. Input on how you might you additional funding to address needs 3. Suggestions for enhancements. 4. Role of Education. 5. How the Govt can incorporate Health Services and Supports.
• Message from LMac: Parents with ASD have diff needs. She’s listening. Consulting with parents and clinicians. We want to look for broadly and reduce barriers. Adding Needs Based components. Create education and health supports. Goal is to announce significant increase of support.
• MCSS listening closely, but will not comment. Commenters are asked to stay on topic and keep comments to approx. 30 seconds.
• Polling Question: Have you filled out the online survey. #ASDTeletownHall
• How to you see the OAP helping your children’s dev and learning? Kristin: Best gains are occurring at and ‘older’ age. Program must be based on need. Access curriculum in school and move forward in dev.
• Carla: Son does not receive service. Would like to see a NEEDS BASED plan that accommodates all children on the spectrum and moving into adulthood.
• Christine: the OAP is not helping many children at all based on age discrimination. Must include all therapies, CBT, and Nutrition, etc.
• Kristin: Son receives 30 hours per week since Nov. Seeing improvement within 2 months. She would wait again (years) if she saw the same kind of progress. We need INTENSIVE intervention therapy. Medically necessary treatment. #OAPTeletownHall
• Lorena: Son receives no service. When are we going to receive service? (approaching adulthood)
• Lisa: Last year son needed 5–10 hrs of OAP services and has improved. Siblings brought into the therapy. Concerned about the future of the program. Families should not have to worry about when it runs out.
• Anatoli: Son has been in the OAP. Need Oversight from regulated BCBA. Needs team approach, and support in the school system. (No support for communication device).
• Adrienne: Has twin boys with ASD. Biggest challenge was that it is difficult to find someone to walk you through the process/navigate the system. Checklist, someone to walk you through. Resources are available that you don’t know about…
• Poll Question: What is your child’s status in the OAP.
• Michelle: I have a family member in the OAP. Prior to that: no quality insurance. Facilities who are not accountable, can take advantage of families. Program must be NEEDS BASED, OT, SLP, must be able to go into schools. Supportive housing waitlist too long. Capacity issues.
• Jenn: Working in the OAP for 10 plus years and saw so much growth from kids who received ABA/IBI. Comprehensive ABA is not offered in school, and should be. We cannot replicate the same results in school under the school’s guidelines. Concerned for families who cannot access ABA.
• Next Topic: If additional supports were available, what would you use the money on?
• Ruby: 20k/5k is age based. 20K isn’t enough. SLP and OT are needed. Needs based system would take into account the need of the individual. We’d buy more ABA.
• Serena: What is necessary for kids who are not young, and not old, is OT, counselling for anxiety and depression. Things that will help them socially, interact with kids experiencing similar challenges, and ABA
• Carrie: On the waitlist: If I receive additional funding — it would go toward ABA therapy, as we would only recieve 5K. OT, SLP, Parent Skills training, counselling.
• Natasha: 1. Learning: the OAP is critical for helping kids adapt. Putting at stop at any age is not recommended. Early intervention is critical. Needs change. 2. Addition funding: system is mostly supporting ABA. OT, SLP are also critical. In schools: no support.
• Jerry: I’d like to see my son in ABA therapy. People with adequate support can flourish. People who don’t have adequate support: suffer, and don’t get to where they need to be.
• Polling Questions: Are you comfortable managing funding? (Keep track of receipts). #OAPTeleTownHall
• Saoud: Child in program for 2 years, 30 hrs/wk. Non-verbal, sensory issues. We buy private SLP/OT. We’d like those included.
• Miriam: Daughter in OAP for a year. Would like additional funding for social skills groups.
• Topic #3: Recommendations for the OAP, program enhancements and what to consider. #OAPTeleTownHall
• Carmen: Moving forward ,more services based on NEED, NOT LEVELS, or age. Fully covered by the government. Need for some is 40 hrs per week — the cost would be in excess of 50K for families. More supports in school: before and after school.
• Jan: As a service provider: we need intensive one on one. We need more funding.
• Lisa: When we look at enhancements: we must looked at Needs Based Therapy. Current plan for kids over 6: 5K is not sufficient. This is our children’s futures, level of independence…a price tag on this is short sighted.
• Tiffany: My son is in OAP. Receiving therapy-we don’t feel that ABA is benefiting him. Would like to see more variety. Speech, Respite, 1:1 Support Workers. Families should be able to allocate funds as kids progress.
• Lisa: Moving forward — must be needs based. Putting a cap on funding, doesn’t make sense as you might need less or more moving on. Additional funding should go to schools to offer more support. To help pay for private schools.
• Polling Question: Overall are you satisfied with the skills of the Behavioural Clinicians you have worked with? #OAPTeleTownHall
• Panera: NEEDS BASED funding, and determined by a certified practitioner. Autism doesn’t end at 6. This is an unethical way to use tax dollars. Some kids may not be able to spend the $20K whereas others will be sold short. Regulatory body for ABA so kids are equally treated.
• Jennifer: Thank you for adding SLP/OT. We need a NEEDS BASED system. We have been paying out of pocket for 16 months, would like to access intensive therapy.
• Polling Question: Do you think that Behavioural Clinicians should be a regulated profession? #OAPTeleTownHall
• Olivia: I’m a professional in ABA. Interesting that you just polled re Regulation. Public needs that protection. Anyone can say they provide ABA. Parents call for SLP/OT — these are regulated. Parents should not be taken advantage of my people without necessary credentials.
• Heather: 9 yo with ASD, diagnosed 5 years ago and has never had intensive therapy. Denied IBI initially. My idea: need to provide social skills groups and other therapies in school. Goals need to be communicated to teachers, this isn’t happening effectively now.
• Next topic: What role should the education system play for kids with ASD to achieve learning goals?
• Rebecca: Ensure that there is meaningful collaboration between ABA therapists and schools so that goals and progress are supported in the classroom. Money put into ASD services isn’t wasted when skills are lost in schools.
• Stephanie: This govt should re-fund pilot programs that have been stopped. Onus should not be placed on teachers. Stop freezing money on EAs so kids have support in schools.
• Lori: More EAs in the school system: EAs that are properly trained in ASD. Too much stress for teachers and students with lack of training.
• Youssef: Kids need more 1:1 therapy in schools. We need to change education rules so we can introduce ABA into the education system. BCBAs must be allowed into schools. More education for professionals as well.
• Olivia: A doctor at a hospital: should include psychological services, and Cognitive Behaviour Therapy.
• Louise: Allowing already trained therapists into schools. EAs shouldn’t be forced to be trained when there are already trained professionals.
• Alyssa: More funding for more trained EAs and staff who are working in the school board that goes beyond one day workshops — -this would be overseen to ensure best outcomes. ABA training and competency should be mandotary for EAs working with kids with ASD.
• Polling Questions: Is your child using special education programs and services at school including supports for ASD. #OAPTeleTownHall
• Chelsea: We need more EAs in the school. We need to have ABA therapists in every school. We have an ABA Consultant who comes in once per month. We could benefit from someone with specialized training on a daily basis.
• Andrea: Education system needs more support. My daughter has been out of school since December because she cannot cope with the classroom.
• Jordan: I’m an ECE. Want to see better support for Special Needs kids. Safety concerns is a huge issue. BCBAs should be allowed into the school,, and we need more EAs trained in ABA.
• Polling Question: Do the pros who currently support your child work as a team? #OAPTeleTownHall
• Andrea: BCBA Clinician who goes into the school to help. It would be nice to see more collaboration. The role of the educator should be to teach. This is what BCBAs do, and they do it well. Would like to govt to recognize that.
• Melanie: *couldn’t make out* Need mental health issues addressed. All areas need to come together to collaborate.
• Amanda: Enhancements: Biggest concerns are the age caps and funding is reduced to 5K from 20K at 6. IBI is most effective when consistent (20 hours or greater). 5K won’t cover these costs. Funding must be increased.
• Thank you for participating, listening, contributing. Everyone is encouraged to complete the survey online, available until May 31st. #OAPTeleTownHall Conference has ended.

A big thank you to Kerry for her tweeting!