Initial Feedback from the Community

On Wednesday, October 27, 2021, the BC Ministry of Child and Family Development (MCFD) announced that Autism Funding Programs and school-age extended therapy benefits would end in 2025 to be replaced by a new system. Few details were provided. The following day ACT set up a form to allow parents to express their concerns and questions about MCFD’s new policy framework. Within five days, we heard from 500 families. Below are excepts from over 150 parental responses that are representative of the concerns and questions families have as they try to understand the implications of what MCFD is proposing.

“Funding. The current system is wildly underfunded and the wait times on services are so very long. Children who mask their symptoms still regularly go undiagnosed. Unless they are increasing funding to schools and increasing the wage and working conditions of EA’s, this could easily mean a decrease in the level of services.” – Parent, Fraser Valley

“While there is certainly a place for low barrier access to services, and expanding access to all children who need support, discontinuing the AFU funding will be detrimental to families. Many of us went through a period of trial and error to find providers who understand our children’s unique needs.” – Parent, Vancouver Island

“Leave the ASD funding as is and provide the additional supports.” – Parent, Lower Mainland

“This change coincides with the funding change for distance learning. This is a huge blow to families who are unable to have their children’s medical and educational needs fulfilled in the public system.” – Parent, Lower Mainland

“Would the waitlist simply move from getting a diagnosis to waiting for a case manager and/or service provider? (Similar to child development centres where you may need to wait months for a consultant and then more than a year for minimal SLP or OT services.)” – Parent, Lower Mainland

“There is a shortage of service providers as a whole, how will you prevent waitlists? Who determines length of services because currently MCFD provides short term services such as behaviour support, will this model allow families to keep a service as needed? Children with autism need continued support and services especially for extremely high needs children, how will this new model be better in supporting us? At this point in time, MCFD has NO clue how many families will want to access these services, how can you then determine there won’t be waitlists and service will not stop for those desperately needing it.” – Parent, Lower Mainland

“I currently use my funding for a learning centre ( Excel in Penticton) because my child is not able to go to public school. My funding is what makes this possible and it has been such a success for him. Without the annual funding I can’t afford the school is it still going to be covered? What is going to happen to schools like this without funding?” – Parent, Interior BC

“What needs to happen is a review and improvement of the assessment process and the shortages. If there are already shortages at the moment, how are these hubs going to ensure we won’t be faced with the same dilemma?? Hubs would be a great separate service for families and kids that are still waiting to be diagnosed. But once diagnosed, funding should remain to be provided for the dedicated needs of neurodiverse kids.” – Parent, Fraser Valley

“We already have years long wait lists for autism assessment. These “hubs” look like a recipe for years long wait lists for therapy. Does the government have a plan to avoid this?” – Parent, Fraser Valley

“I do agree with the changes being made regarding assistance for children without diagnoses or with a diagnosis that does not come with much support (FASD, etc.) as there are often barriers to being tested and clearly significant need for some children in that category. However, I think many children who are currently receiving support for ASD will no longer, despite their diagnoses and personal need. Ideally, families would have the option of the hubs or individual funding.” – Parent, Lower Mainland

“What about supports for rural areas? Time and time again, rural areas do not have the population to support services and parents have to drive. Many parents can’t afford to and/or the lack of access creates further stress on the family unit.” – Parent, Interior BC

“I am concerned about specific approaches being mandated when they are not in the best interest of the child (ABA approaches for example). And what about supports that are not specific to an area? For example it has been very difficult to find an OT who specializes in executive functioning for teens. We can work with someone who lives outside our area at the moment because the wait lists are so long and/or there is a real shortage of OTs with this skill. How will this new model ensure flexibility and choice ?” – Parent, Lower Mainland

“We are very very concerned. Our child is non-speaking an needs every dime of funding. And over and above. I already pay 5k + a year in addition to the 22k under 6 funding. Having his level of care through a hub will not work as his needs are very specific.” – Parent, Lower Mainland

“This is a good heads up and the new service initiatives are great! However, since the needs of our kids are all different hence the existing funding scheme can help greatly to cater each individual needs as we have a choice to choose the right support that fits best for our kids. I also wondered whether they have conducted any research / survey with a group like us (parents) before this decision is made? This is a big change that will impact how our kids grow… I just hope they can involve us more so they can understand what we really need, not only funding but how the new support operation works best for the users.” – Parent, Prefer not to disclose

“I have seen the whole process unfold from my pre-parent days as a family support worker in 1995 when there was almost nothing available, to many services and opportunities throughout my son’s childhood and current adolescence. Secure funding for families has led to the development of more availability and competency of service providers. It has allowed parents to be on more equal ground economically because it is more likely that parents can still work. If funding is reduced or lost, the costs in mental health to our children, to their future employability and capacity for healthy lives, I can’t even imagine. Funding for intervention has helped to reduce the stigma of autism, because our children and our families DO BETTER with reliable support that is chosen by the families who are directly affected.” – Parent, Vancouver Island

“The only help my son and our family has had is getting him to a counsellor utilizing autism funding. Although they don’t seem to work on much, it gets him out and speaking with people. The Ministry has indicated they can’t get my son a psychiatrist, the psychiatrist that was up here never spoke to him. I have to travel to Vancouver for Psychologists, the BC Childrens hospital has declined us for many years, the private schools say he is too unstable. We can’t get him stable if we can’t get him on meds, to get on meds he needs a psychiatrist. The ministry says that he must go into the system and we need to charge him the next time he puts us in the emergency room. The FSJ hospital will not help because they don’t have any available Psychiatry for his age group. So the only help other than private paying is for him to utilize his autism funding for any kind of help. But they want to remove that, especially in the North????” – Parent, Northern BC

“My children are autistic, as are their parents. We have an established home team that has worked well for us for 10 years. Travelling to a hub will cause unnecessary stress for our family and won’t provide what my children need. Which is to work with familiar providers in the comfort of our home. My son will no longer be able to do tutoring with his OG tutor who lives next door to us. They don’t be able to continue with their art therapist who has been lifesaving. This new model does not meet the needs of my children and my family at all!!!” – Parent, Lower Mainland

“I’m concerned about the hub model. In rural and remote areas where services are very hard to come by, families have had to use funding creatively to find support. When the OT, PT, SLP and Behavioural Consultant are already overworked and often not available, many families have had to make do with community-based programs, training their own BIs, etc.
I’m concerned that this model may seriously impact kids who are already struggling to get the care they need, and will leave them without anyone to support them at all.” – Parent, Northern BC

“This is a disservice to children with Autism. My daughter has used the funds since she was 3 years old and is now very high functioning. With out this program she would not be where she is today. Is there something in place to replace this program? Why is the need to cancel the program when funding has proven results? There is an increase is children with Autism and a need now more than ever.” – Parent, Northern BC

“Will we have the option to choose providers for our children including BCBA Consultants who we have had for over a decade and know our complex children. Will we also be able to choose Center based vs home based as neither option will work for every single child. We need to have flexibility and choice or this will not work.” – Parent, Lower Mainland

“We have a very complex ASD young teen who requires very individualized help. Taking away our choices of people who he has bonded with or will bond with to work with him will severely impact him and ourselves. Please rethink this and allow us choice.” – Parent, Lower Mainland

“Who determines the “need” for our children? And how much funding they get? Is it something that happens once, yearly, etc.? How often do we need to fight for our child to get the services they need? I see this taking a huge amount of time for the families, and personally, as a full time working mom of three children with medical issues, time is not something we have a lot of already.” – Parent, Lower Mainland

“There is something to be said for training experts and having them securely accessible anywhere our children reside. There is something to be said about integrating universal design into schools, communities and so on. The Hub and Spoke model is all about efficiency of dollars for management and is scary because sometimes it cuts out the diversity of services. Pretty soon there is a small number of folks at a huge shiny hubcap driving the whole vehicle with those on the outer rims hanging on for dear life. Those who are furthest out sometimes have the most pressure and can’t hang on and fall over and get squished… like crumbs spread out over a thin layer. So I am wondering what is the intent of this change and what is the destination of the vehicle and how will this model address the ongoing growing need for support to individual families and children across the province? How is it better? I believe autism has been a buzz neurological condition that has left ADHD and FAS in the dust because it was made apparent and particularly among the wealthiest of nations and people. FAS holds many of the same characteristics and issues, has a similar spectrum and ADHD is not only comorbid with both FAS and ASD but is in itself a real challenge for individuals and families. So if applying a higher standard to all children is the goal.. there is nothing to lose.. if lowering the standard for ASD and spreading the crumbs is just a change without thought. Without solid infrastructure to support the children and families more universally and accessible universally.. it is not such a great model. The rural and remote areas and many many children will remain unspoken for.” – Parent, Northern BC

“The details of this program are very vague and have left a lot of unanswered questions. If there is no referral necessary and this program promotes timely access to service then details need to be provided on how will the demand for service be met? Is more money going to be allocated to fund all the children who require service or is the money allocated for AFU going to be reallocated and spread thinly over a more diverse population?” – Parent, Interior BC

“I am also concerned about the input that autistic adults will have in the set up and roll out of the hubs and support services on offer. We have made such progress in understanding the autistic experience, and developing intervention/support strategies for autistic people without the input of autistic adults would be a step backwards. Acknowledging neurodiversity, and respecting neurodiversity, needs to be reflected in the development of support structures for neurodiverse individuals. We wouldn’t exclude indigenous people when developing ways to support them, nor would we exclude minority/marginalized groups. We shouldn’t be considering the same for autistic people.
My question is: Have Autistic people been part of the discussion about what will best serve this community and neurotype and what will their input be going forward?” – Parent, Interior BC

“Parents of children with diverse needs NEED support, not more paperwork and appointments to figure out what they need. They know what they need- respite, tutoring, therapy, equipment etc. They do not need to be told that they are at a “certain level of need”, assessed by someone that is not in their situation. Rather than hire more “experts” to use the funding to force parents to attend more appointments to determine what is needed, can we simply let parents be respected as the experts in their children’s lives and use all of the funding for direct support to families?” – Parent, Lower Mainland

“I’m very upset. My children will be considered too high functioning to get support, I am sure. Meanwhile, their behaviours are causing total dysfunction in our family. I fear we will be cut off of funding, cannot but equipment anymore, and cannot have our preferred BIs to our home. Please fight against this terrible model.” – Parent, Lower Mainland

“First, we know that diagnosis informs treatment, this is well supported by the research literature. Without diagnosis, how can we match children with the proper interventions? We would never separate diagnosis from treatment in any other medical field.
Second, I am concerned that the hubs will struggle to meet the needs of diverse clients. It will be difficult to almost impossible to find clinicians and facilities who can treat behaviour problems in a 3 year old with autism and trauma and addiction issues in an adolescent with FASD, for example.
Third, I am concerned that the hubs, like other public service such as Child and Youth Mental Health or Child Development Centres will be overwhelmed by the requests for services and underfunded. In these existing “hubs”, there are long waitlists, limited depth of treatment, and staffing burnout . Comprehensive treatment of all children in the province with self-identified developmental needs will have a very large price tag, and I would like to see the budget for this venture.” – Professional, Prefer to not disclose

“If the Government truly wants to help “all children with disabilities” then they need to leave the Autism Funding Program alone. They need to create a separate program for all the other children; which is the “Hub”. It must be a separate budget from the Autism Funding budget! This way all the children are getting all the support they need inclusively.” – Parent, Vancouver Island

“A program announcement with few details and no attached funding is poor government. You would never make a plan with capital costs and not budget for it, or at least connect need to funding. disappointing.” – Parent, Lower Mainland

“When will the infrastructure and budget portion of this be released to the public? Why has it not already? Please, don’t say you’ve announced these sweeping changes without also devising a system in which to: train staff, secure/build facilities, budget for it” – Parent, Vancouver Island

“‘Lack of detail or budget. Potential reduction of funds for families with ASD. Loss of individualized programming and choice of service providers. Long wait lists.” – Parent, Vancouver Island

“This announcement greatly concerns me as an autistic mom with two young boys on the spectrum who also have ADHD and PDA. AFU funding has allowed us to compile specific teams of knowledgable, experienced professionals to meet each of my boys’ unique needs. Unfortunately, the services we have received from MCFD over the years pale in comparison to what private service providers offer. From our experience, private service providers who have demonstrated a much better understanding of autism and how to effectively support complex needs.
The services from MCFD have for the most part been lacking. Our family has gone through 4 social workers…one of whom was amazing and attempted to put as many services in place for our family when we were in crisis. Sadly, she left. This is not surprising given single social worker typical case load is over 200 families.” – Parent, Lower Mainland

“I am concerned that years of working to get my child assessed and finally being there and pieces finally falling into place all the hard work will be wiped out. Who in the hub will determine what my child needs? MCFD ignored us for over 5 years which Included many hospital visits and family crisis. Why can we not keep the AFU and have the hubs for other diverse needs? For years we hear benefits of early intervention but after 5 years of asking for VICAN assessment we went private at considerable time and expense. Had my child been assessed early and gotten early intervention maybe my marriage would have survived, maybe caregiver burn out would not be my reality. I have zero faith in MCFD ever listening, the social workers are already working beyond a reasonable case load. This is a way of stripping funds and further harming the future of the children of this province.” – Parent, Vancouver Island

“What I see is the MCFD is taking funding away from autistic children and children in the At Home Program in order to fund services for other children with needs. There should be more funding and resources put into other programs to support these children instead of taking away from another group. Autism funding and AHP funding needs to be increased, not cancelled. These are separate programs and should stay that way.” – Parent, Lower Mainland

“DEVESTATED! $6000/year has certainly been helpful, but as parents with a 19 year old son who is autistic, even with this support, we are worn out, broken in spirit and barely hanging in. Can’t imagine what we would do without having this little bit of support, which over the years has become less and less as service provider’s fees have gone up to meet the demands in the rise of cost of living.” – Parent, Vancouver Island

“My daughter was diagnosed with autism at age 3. Our family was on the waiting list with SHARE for SLP and we never made to the waiting list for SLP services. We only had a kindergarten assessment done and that was it. That was the extend of services. We found our own SLP, BA and BI. Our home team knows our daughter and some of the services are delivered from our home. Why are we moving back to institution based approach? Wouldn’t it be better to allow the families to make the right choice for their children? Why does it need to be one or the other? Why not keep both options on the table and the families can make their own informed decisions based on their unique family needs. Why is this being brought forward without consulting the families, caregivers and providers first? Why is this so backwards?” – Parent, Lower Mainland

“How can it be guaranteed that the new system will not be overrun and will force professionals into a triage system, where only those with the most severe of needs will get treated as is currently the case in other government run and associated programs such as Child and Youth Mental Health and Sunny Hill?” – Parent, Lower Mainland

“For many of our ASD kids they have developed connections with their support teams that took a long time to develop. Will our providers be able to opt into the hub network or will it be whomever they decide to give us? What about equipment? Other programs that they have be able to access with their funding?” – Parent, Interior BC

“I do not agree. A one system fits all model won’t work, especially for families living in remote areas.” – Parent, Interior BC

“What is going to happen to kids who use their AFU funding for a specialized school? Without his school (Chris Rose Centre for Autism) my son would not be in school. He gets his therapy this way” – Parent, Interior BC

“You are removing the flexibility we desperately need in rural areas. I do not believe for a second there are suddenly going to be the professionals needed to staff these “Hubs”. We already are short SLPs and OTs, BIs BCs and pretty much all therapists. We are looking at long wait times for even basic services.” – Parent, Interior BC

“What are going to be the qualifications of the ‘case manager’ position in hubs? Case managers will be determining if and how much our children need support and I’m concerned that those who are impacted by their autism (or other disabilities) but are verbal will be cast aside due to waitlists. I look at Ontario’s hub system and how their waitlists went from 20,000+ to 50,000+ children.” – Parent, Lower Mainland

“While I am overjoyed that kids with needs will have access to service without a diagnosis, I am concerned that kids who don’t fit into the services provided will now fall through the cracks.” – Parent, Lower Mainland

“After 2025, I want to know who gets to decide what needs my child has that deserve support, and how much support those needs merit? Who gatekeeps the funding and the services offered (both type and amount)? What is the selection process for Hub service providers?” – Parent, Lower Mainland

“Our son was diagnosed in 2018 and have had a wonderful support team since in which our son has grown a bond with his support workers. Going to “a hub” and starting from scratch is not an option for us. It’s been hard enough going to $6,000 per year for his supports.” – Parent, Vancouver Island

“As a parent with a child with autism and a teacher who supports numerous families who have children with autism I am really concerned about this announcement. Many families struggle to use their autism funding and it is certainly not a perfect system but there’s such huge need for families to have support to navigate the challenges of a child with autism. My own son is now a first year university student and a huge part of that success has been the interventions he has had over the years paid for by autism funding. Many autistic people can become contributing members of society if they have the right supports early. Families need to have the right supports to help them get their needs met in healthy ways.” – Parent, Vancouver Island

“What does “needs based” mean? Will in-home services still be allowed? Will children be allowed to continue work with their existing professional team (Behaviour consultant, etc.)? Will a formal diagnosis prove sufficient for services, or will bureaucrats be making final decisions? Will there be a dispute mechanism for unsatisfactory decisions?”- Parent, Lower Mainland

“I would appreciate if the MCFD provided a detailed plan/description of the programmes that will replace the original ones, otherwise it makes everyone anxious about the future of their children, and their human rights for equality not being guaranteed.”- Parent, Lower Mainland

“I feel like a bomb has been dropped. Announcing that AF will phase out with no details on what’s going to be provided instead is scaring the hell out of a lot of autism parents. There should be an option. This “hub” is for any ND children not just autism and autism funding should be a choice for parents. Any services provided by the govt is slow (as we can see form AFU responses) and I am afraid that means delays for services and support for my child and other autistic kids when timing is so important. The hub should be used mainly by children with non-ASD diagnosis or no diagnosis. Leave Autism funding alone.”- Parent, Lower Mainland

“As a service provider, I think that promising a more streamlined service with no waitlists is just promising a pot of gold at the end of the rainbow. It sounds great. It will not, in any way that I can see, address waitlists or services. Just as juggling the descriptions of services over the last 30 years that I have been practicing has not done either.”- Professional, Lower Mainland

“How will parents ensure that they can continue to access the same services their children are using so that mental health crises do not occur? For instance, we have used a psychologist as our only provider for years as that is the best fit for our child’s very complex combination of physical and mental health with Autism. Any typical therapies, such as ABA, are not suitable for this specific combination, nor would the short term/impersonal mental health service like is found with the health regions.”- Parent, Lower Mainland

“I think it sounds fantastic! So many kids slip between the cracks because they cannot get funding until a diagnosis or their diagnosis doesn’t qualify them for additional supports. My concern would be, of course, how is the level of funding or support services determined instead of via a specific diagnosis or acceptance to a program like AHP. My son is high functioning autism but still needs support, primarily at school and with social skills programming outside of school. I would hate to lose access to these services due to his level of function. We got there DUE TO the supports we received. If we didn’t have them in his earlier years we wouldn’t be where we are today. My daughter is in the At Home Program and receives school-aged support funding (PT, OT, SLP) plus in-school EA support. She is going to require some level of support or care for the rest of her life. I was hoping to see a more comprehensive funding model since AHP covers only a portion of each of her therapies, whereas Autism Funding covers it all up to the annual amount.”- Parent, Lower Mainland

“There’s already huge waits for programs. My son has been waiting 3 years for a life skills program and the respite program. With all kids with or without a diagnosis the wait times will be much longer.” – Parent, Northern BC

“It is great that children with other neurodevelopmental and physical exceptionalities will be able to access greatly needed services to support their development and ease the challenges caregivers face. Unfortunately, as a mother of a child with ASD and other challenges, I am filled with anxiety at the absolute lack in clarity in how these changes will play out past 2025. There is no information shared and there are no guidelines or details to explain how funding will be allotted. And, as much as I would like to believe that children will be able to access these unknown services and funds faster than ever, having lived through many different wait lists to get services and knowing how overburdened and taxed the current ASD funding program is I am sure that this is a promise that won’t be delivered. Parents and children need help now, not six months from now, a year, or even two years from now. Decrease the bureaucracy and increase access and service providers.” – Parent, Vancouver Island

“Where will you get the $ to be able to support ALL children INCLUDING maintaining the level of support say, an ASD child receives now b/c of the individual funding?! And if that is not the plan Who and how will they decide which children have the highest level of “need” as that’s VERY subjective! […] Why not just ADD this as an ADDITION to the ASD funding we have now so other kids can access services but it does NOT impact what our ASD kids already have access to b/c they NEED IT!” – Parent, Lower Mainland

“I think people with Autism need all the help they can get, especially trying to adapt in this messed up world. My son has benefitted greatly by this funding. To cut it would be heartbreaking for so many.” – Parent, Vancouver Island

“Who is going to staff these positions? Services for autistic people are already capped out in Prince George. Plenty of ASD kids are not receiving services regularly. Wait times are insane for older teen services. I don’t feel this new model benefits anyone and will put many youth in serious trouble. If this goes through, the government has failed ASD individuals. Yes, more services, more funding needs to be available to everyone but basically taking away what is in place to try to fix an already overloaded system is recipe for failure.” – Parent, Northern BC

“What happens to funding for essential needs like equipment? Who pays for that now? Especially for low income families like myself. Also what about existing relationships that my autistic son has with his already providers? He won’t sit in a room with someone he doesn’t know. How will this transition be beneficial for him?” – Parent, Interior BC

“Will I be able to keep my current behavior consultants, BIs, SLPs and OTs? What kinds of choices will be available to parents? Will the affect the support levels in schools as well? Will parents still be able to receive valuable in home support from BIs or will our children have to go to a center? What happens to current providers who have their own businesses? Will we still be able to access them or will they be enveloped by this new system?” – Parent, Vancouver Island

“We have worked with our child’s Behaviour Consultant since the time of his autism diagnosis when he was 3 (7 years) and his Behaviour Interventionist for the last 5 years. His home team knows him and know how to support him and help him adapt to the world around him as he grows. They know our family and collaborate with our school teams. He trusts his home team and has been extremely successful with their evidence based support. We fear losing such valuable individualized support and having to shift to a one size fits all system of centralized hubs that will inevitably equate to long wait times, inconsistent approaches and methods, and unreliable sources of support. We are terrified of what this type of generalized model will mean for our child’s future. Will there be any opportunity for families who have invested years within the existing system establishing and managing effective home teams for our children, to opt out of the centralized hub model and receive funding to continue with our established supports?” – Parent, Lower Mainland

“We have worked with our child’s Behaviour Consultant since the time of his autism As a parent of an autistic child who’ll turn 17 years old by 2025 spring. I found it really hard for us to go back to point zero and to start all over again, after we’ve been through all the stress and hectic process of diagnosis, filing for autism funding, and finding service providers. I think this new project should apply only for kids who will be Turning 6 years old by 2025 or other kids with variable disabilities.” – Parent, Lower Mainland

“My deep concern is this…my service providers ( the same service providers)have worked with my children and family for years! My service provider not only provides trusted therapies for my kids, my service provider also supports me ( the parent) as I navigate parenting children with diverse needs. They know me, and they know my families stuggles, and their understanding of our needs helps me is ways I can’t even beginning to describe. Parenting an autistic child is a very lonely journey (especially as a single parent). My service provider is my only support person! Families who have been with a same service providers for many years BETTER be able to have the option to KEEP the same providers!” – Parent, Interior BC

“I understand and support all children being properly supported. But I don’t support eliminating services, specifically autism funding. These service providers know our kids best. They have established a proper understanding and plan for them. I am not about to start at ground 0 where my children will be thrown into a mixed mess of new professionals and people that DO NOT know my children. Do you know how exhausting this is? What kind of thoughtful process is this? It’s not. This is unethical. You are set to cause undue harm to thousands of children. Are you aware of this and are you ok with this? From a frustrated and exhausted mom.” – Parent, Lower Mainland

“How will “need” be determined? and what will be the wait time for THAT! It’s impossible for the government to open enough centres and hire enough service providers to accommodate all those in need, therefore this will just put more families on the waitlist. Money will be wasted on admin and operating cost of a centre whereas that money would do much more for families” – Parent, Lower Mainland

“As a single mom, trying make ends meet, the only way son can receive the support he needs is through the autism funding program. Without it, my son’s understanding of the people and their non verbal communication, which is a crucial part of typical development, will halt. He will fall behind, socially and academically, which in turn, will prevent him from developing and learning life skills which neurotypical adults take for granted. In the long run, these children will not receive the support the require to become independent adults, forcing a potential for larger funds from the government to support them for life. This is not the direction we should be headed in, BC!!!” – Parent, Vancouver Island

“I’ve been crying all day, I’m so scared what this means for his future. I understand going forward, children that don’t get services do need more help, but don’t touch the tiny little budget for the children with autism that have fought to get where they are! It’s $6,000 a year?!? That’s a drop in the pond for the government. Don’t change anything for those of us receiving services already. What is going to happen to our children?? Many of us are unable to take our children to these “hubs”, and are already established with our teams. The government is failing our children with autism, and I can promise you 100000000% us parents are going to fight back with everything we have.” – Parent, Lower Mainland

“I am concerned kids with Autism will no longer get the therapy they need, & the same amount of funding they need and deserve. I am concerned parents will have lack of control over the funding and providers that support their children.” – Parent, Vancouver Island

“I predict that the school systems will become even more taxed as teachers will have to deal with autistic students who require more attention. Also, the teens with autism, are going to suffer without proper support and potentially become adults with learning disabilities that prevent them from becoming successful adults.” – Parent, Interior BC

“Will parents get to continue using the teams they set-up prior to 2025? Will there be any discretionary funding for equipment? What does needs based mean? Who determines what the need is? Will families still have funding for different activities like therapeutic riding or tutoring?” – Parent, Vancouver Island

“Another worry is about the lack of service. We can use AFU funding to ensure that we have regular OT. In fact we have to top up with our own funds as the amount of money is insufficient to cover weekly sessions. Early childhood OT was six sessions and then back to the end of the wait list. That was completely insufficient. How will you ensure that all children who need services will receive meaningful support?” – Parent, Interior BC

“My son would not be where he is today, if it wasn’t for the autism funding. He has needed speech therapy to be able to speak. He went from not be able to speak at all to using an iPad for his communication and now thanks to his team especially his speech therapist can now speak on his own. He still struggles with some letters, so needs continuous support with speech to work on this on going problems, behavior issues for safety reasons […] This is very important program, as I am sure many parents would not be able to afford all these services that these children need. We all want the best outcome for our children and without this program, I feel there will be more challenges that will come as they become adults.” – Parent, Northern BC

“If this new model is like the current early intervention offered pre diagnosis, how is this going to help our ASD kids? The early intervention program offered by the local health authority is already over run and kids only see a SLP, OT or BI once every two months for an hour, how will this help ASD kids achieve the goals?” – Parent, Vancouver Island

“Rural northern communities are extremely deficient in variety of supports. My child needs to “click” with support providers or he will shut down and not engage. I see no benefit in having no choice and possibly waste the little funding he does have on a support he needs yet dislikes the support person. My child is 16 and no where close to “aging out” When the clock strikes midnight on his birthday, in a few short years, he will not be suddenly “cured” of Autism. An increase in funding for ALL (not just ASD) is required, not spreading the funds thinner. I can’t help but feel like I’m going to have to ramp up my advocating skills even more than ever. Isn’t dealing with the school system enough? It’s anxiety producing just thinking about my son’s future and whether he is going to “make it in the outside world” and have a meaningful career!” – Parent, Northern BC

“How will services be delivered? Are families expected to drive to “hubs” in order to receive therapy for their children? What happens if you live in a rural community? How will you reach those families? How will you determine which children need services? Our child could be labelled as “high functioning” but he struggles with pragmatics, regulation and some academics. Will he lose his services so that someone else can us them? Waitlists are already long (we have been on one for more that a year). What are the lists going to look like after this change? Our child has extreme sensory issues and requires equipment to help him regulate. Do we still have access to money for these items or do we now have to pay out of pocket for these?” – Parent, Northern BC

“How are we going to be able to access alternate therapies with this hub system. There is not a one size fits all with therapies” – Parent, Fraser Valley

“What does this look like for those that didn’t, or in the future don’t, take the financial strain to privately get their children diagnosed compared to those parents that do take the private assessment?” – Parent, Vancouver Island

“Is the new initiative grounded on evidence-based practice? Where are the documentation of research? Will there be guaranteed levels of service? We are certainly worried about long waiting list and families will be forced to pay out of their pocket for their children’s therapies. Will there be enough funding to support adequate interventions for all children with support needs? What will be the criteria to determine what services (such as SLP, OT, BA, BI, etc.) will be provided to an individual with diverse needs? And the frequency of each services? Who will conduct such assessment?
Will parents have choices in service providers?” – Parent, Vancouver Island

“Will my child get to keep his current and/or chosen team? Irrespective of where they live or he lives. Will my child’s support level remain at least the same and not be diminished? Will my child be effectively penalized for good ‘performance’ or lack of issues? Will we end up forced onto waitlists that we would not be on if we had free agency in choosing our interventions?” – Parent, Lower Mainland

“My daughter is considered “high functioning”. After years of anxiety, sensory and social issues she was diagnosed with autism through a private assessment that we paid for. She is an invisible disabled teen who I worry about receiving services for. She holds things in and masks to her sentiment as she’s has melt downs at home. Will we be denied services because she’s not aggressive and loud? She’s been on a wait list for over a year with a MCFD centre in Burnaby, we had an interview and never heard back. Is this what the hubs will be like?” – Parent, Lower Mainland

“Parents with children on the autism spectrum must have a voice at the decision making table moving forward. We have designed our lives around the existing system and to adopt a new system would mean uprooting everything we’ve built to help our children succeed.” – Parent, Vancouver Island

“I’m extremely concerned about this announcement, I am a single mom. I rely on low income assistance as I am the sole caregiver of my children and I’m unable to work a conventional job. Taking away autism funding not only adds the burden of me trying to manage my children’s therapy financially as well as being their therapist, but it also adds the impossible fact that I may have to find a job to pay for these therapies they rely so heavily on. This will also add to my daycare costs and take away my ability to be their daily support. It also adds a huge burden as I live in a small community with very little resources as it is.” – Parent, Northern BC

“Is the new initiative grounded on evidence-based practice? Where is the documentation of research? Will there be guaranteed levels of service? We are certainly worried about long waiting list and families will be forced to pay out of their pocket for their children’s therapies. Will there be enough funding to support adequate interventions for all children with support needs? What will be the criteria to determine what services (such as SLP, OT, BA, BI, etc.) will be provided to an individual with diverse needs? And the frequency of each services? Who will conduct such assessment?” – Parent, Vancouver Island

“My child was eligible for At Home Program and given a diagnosis of Global Developmental Delay as a preschooler. He was fed with a gtube. He still did not qualify for service at a Child Development Center for PT or OT because his delays were not severe enough. We paid privately for SLP services to address swallow safety and oral motor control. When he was finally eligible for school aged extended therapy we got OT and PT which made a huge impact on life skills acquisition and school success. I am doubtful that this change in funding model will adequately meet the needs of all children. Hubs are not equitably funded and staffed across the province now, what makes them think extending those programs to age 18 will change anything?” – Parent, Lower Mainland

“Needs based” Who decides what an individuals needs are? If this is not based on diagnosis it could mean that despite a child having an autism diagnosis, if they are adept at masking, then no need may be perceived. Who decides when this need ends? A government worker or a qualified professional? How long will services be provided, until an issue is resolved or when a child ages out at 19 for those with a diagnosis. Will services be ad-hoc or continuous? Will extra funding be made available to cover all the children who require additional support?” – Parent, Lower Mainland

“I have two young children both with an ASD diagnosis. 2 years old and 7 years old. Both require very different intervention techniques. What works for my daughter does not work for my son. And vice versa. This is not going to work for families who have children who respond to specialized forms of intervention, like my 2.5 year old daughter. It took us a long time to form the teams that work for both my children. And to uproot them away from what they are comfortable with, what therapy works for them and WHO they feel safe with. I do not recall seeing any sort of a poll asked of those families currently receiving funding and if this new Hub system would benefit them. I do not recall being asked my input on this change.” – Parent, Lower Mainland

“Given that the numbers of available service providers appear to be a bit short presently, will the Ministry and Government of the Day consider a strategy to address these shortages through ways to encourage increased enrollment at schools that provide training at the professional/paraprofessional levels to counter the possibility that these support services becoming overwhelmed with the estimated 28% increase of families receiving much needed services?” – Parent, Lower Mainland

“What about continuity of care for our children and support for the family unit – having finally built trust and working relationships with service providers, I question if MCFD expects our autistic children to adapt to these changes – that’s one thing – but are they aware that these huge shifts may also cause significant trauma and regression?” – Parent, Lower Mainland

“The school system already allocates support based on needs, which means the lower needs/high functioning autism kids get limited supports because the funding gets used up with kids with no diagnosis and higher learning needs. Even though my kid has funding, there hasn’t been increased supports. (higher needs = higher support) and yet I’m drowning trying to convince people that he needs help regulating his emotions or social skills. I’m worried that a needs-based hub system would only allow certain services based on “perceived needs” vs actual needs. Is someone with limited understanding of autism and my child going to be making these decisions?” – Parent, Fraser Valley

“My youngest son masks well. I fear he will not get the services he needs because he will “appear fine”.” – Parent, Interior BC

“Our concern is that there will not be the infrastructure for this proposed system. There won’t be enough therapists to fill the need. The waitlists will become so long because there won’t be diversification of services if it all goes through a “hub”. How will they pay for these centres?” – Parent, Vancouver Island

“Wouldn’t solving the ASD assessment waitlist issue solve the problem of families not being able to access services early? Why not open a similar funding situation for other kids with behavioural/developmental/ physical disabilities instead of making families with children on the spectrum suffer instead? Because we will suffer. And if your proposal fails, you will effect countless children’s quality of life indefinitely. You could cause irreparable damage to innocent children who already have trouble being included, understood and accepted.” – Parent, Vancouver Island

“Will these new service hubs be available to small rural communities? Driving an hour (or more) for weekly appointments would be too much of a strain on our family. We have greatly appreciated the freedom to choose the service providers in our area that share our same values and philosophy on life. I fear that these new service hubs will not provide this.” – Parent, Interior BC

“While I think that it’s about time to service people with diagnoses other than Autism, or no diagnoses at all, I am concerned that individuals with autism will be receiving sub par services compared to what they get now. It sounds like we won’t get to choose our service providers anymore which is really important for families. Will I now need to bring my children to a “local” centre rather than being able to choose a provider who is able to come to me. My child can’t handle transitions and getting in the car to go to access therapy is unfortunately not an option for us. I am quite concerned that the changes are not going to work out well for many children on the spectrum.” – Parent, Lower Mainland

“This is incredibly frustrating! As a parent who had to wait 5 years for an official autism diagnosis because of waitlists and referrals, what will this “hub” do to benefit families living in rural areas? So unfair for my child and our family.” – Parent, Vancouver Island

“Autism is not a spectrum that travels from left to right. It’s multi-faceted and dimensional. My son didn’t flap, fixate on planets or trains, nor did he avoid eye contact. He isn’t “typical” in that sense. However, he is incredibly compromised in terms of grasping abstract thought and executive function so much so that his LRT informed me that he may need to transition to the Evergreen learning track. Though he has an average IQ, he simply needs too much direction and help due to his extreme weakness in executive function. This is a travesty. From a funding perspective, my son isn’t “bad enough” to be accommodated into our community social programming at the Loft. I was able to use his funding to hire a guitar teacher and most recently, a skilled SLP specializing in executive function. When funding goes to a hub, would I have that option? Will the system recognize his deficiencies enough to provide us choice in funding that help, or will he be deemed “not bad enough”?” – Parent, Interior BC

“We have experienced the current school based hubs as well as accessed services through Child and Youth Mental Health over the years. These services were not only difficult to access because of extremely long waitlists, they were mediocre at best and harmful to my child at worst. I have absolutely zero confidence that these services are going to be improved. The ONLY reason my 15 year old kid is even going to school is because I am able to use that individual ASD funding for the therapeutic learning services that she receives at an independent school. I strongly agree that all kids should be able to access supports regardless of a diagnosis/designation, but I am super skeptical about how this is actually going to be implemented. Why, when so many of the the resources are already ineffective, are we focused on making those ineffective resources more accessible? It feels really backwards. My kid needs a supportive learning environment. They don’t need to be taught how to sit in a classroom, they need a “classroom” that meets them where they are at. We need more options for learning and more supports for teachers!” – Parent, Lower Mainland

“We had to wait months to even find and see someone provided by the government in our rural mountain town…how are you going to provide people for areas like ours and guarantee quality and options on service providers? What kind of therapy are you offering considering not everyone is on board with ABA? How do you guarantee kids will get seen at the rate they need to be seen for therapies when you narrow it down to one hub that may or may not have enough workers to fulfill needs? Are you raising pay for those that work in these areas so that those that might consider going into the field see it as a worthwhile opportunity? The demand has always been high for these fields and now implementing this you are going to be hard-pressed to find people to fill all the spots you need. What happens if the hub is not a fit for our child? How do we petition for the resources we need to help them thrive in society if pigeonholed to one possible place for help and no funding to find help elsewhere?” – Parent, Interior BC

“This is once again the government deciding that they know what’s better for our children than we do. Parents of children with autism fight daily for the needs and rights of their children. Taking the decision making out of the parents hands and drowning it in bureaucratic red tape is not the way to get all diverse needs children the funding and help they and their families desperately need. This is about the BC government/NDP trying to save money and cut costs plain and simple. By taking this money and funneling it through a government agency it will have very real and desperate consequences on lives of children in this province. Don’t be fooled by what you read, this is not going to make things better for all diverse needs families who are already stressed beyond limits, this is the provincial government cost cutting at the expense of children with disabilities.”- Parent, Lower Mainland

“What does this mean for my son with autism, who is in grade 2, and needs support with his language development and social skills? The reason he is doing as well as he is, is because of his early intervention team and their expertise. They changed his life. How will he navigate adolescence without the support of his team, and with his funding being cut? How will I afford to pay for these services in addition to what the current funding doesn’t cover for specialists such as OT and SLP? And if everyone is being funneled through central hubs, what does that mean for wait lists? There are so many unknowns in this announcement, and it truly felt like they were trying to convince me that it was a good thing, with all of the testimonials, but they “glazed” over the comment so briefly about the individualized funding ending in 2025.” – Parent, Northern BC

“How does this change affect the school system and IEPs if at all?
Will the number of service providers increase to accommodate more families being served, or will services be diluted.”- Parent, Lower Mainland

“I am concerned about who will be assessing my children for services – what their qualifications would be, and how they would assess them. I am concerned that I will have to give up the team that my children know and trust in 2025 and move them to a new set of providers who have not worked with them since their diagnosis. I am further concerned that they will become just another set of numbers in an overworked and underfunded system. I am concerned that my children will be placed in competition with others across my community for a finite group of resources and they may lose out on services by being deemed “too functional” by an assessor who may have seen them once/twice in a clinical setting rather than a home or school setting. I am concerned that BC’s autism funding and treatment will go the way of the mess currently in Ontario. I am concerned and very angry that the first I heard about this was not even a mass e-mail from the MCFD, but through a tweet from a political reporter. There was no consultation that I was aware of, and I feel extremely blindsided by the MCFD and the Provincial Government.”- Parent, Lower Mainland

“We live in a rural coastal community and struggled to find support to access. In the new model it indicates rural communities can only access services virtually. This means for us no services as not all kids are able to find connection online. We live in an isolated community that requires ferry access. It’s not even a location on this survey, we routinely get lost in the support promises.”- Parent, Lower Mainland

“I want to reiterate ACTs concern about whether there will be guaranteed levels of service, and the funding to support adequate interventions for all children with support needs. Support needs do not end once a child enters school and the education system cannot support children in all the aspects of the their life as they need. Current Autism Funding helps parents bridge the gaps in support their children need. What will replace school aged funding?”- Parent, Lower Mainland

“What about equipment? parents can currently use autism Funding to pay for equipment recommended by the child’s support team. What will happen to this support?
Parents can currently use their child’s funding for educating and training themselves to support their child’s diagnosis? What will happen to this type of support?”- Parent, Fraser Valley

“I am concerned about service provision to over 6 age bracket as supports are already so limited. It is a struggle to get appropriate supports in rural communities and insufficient information has been provided to outline how services will be provided and based on who’s determination.”- Parent, Vancouver Island

“Will parents still be able to choose service providers outside of their local Hub? As not every service provider clicks with every child and their needs. How does the Government plan to get good, neurodivergent affirming service providers to relocate to these community Hub’s? Some would need to relocate to other communities to fill the necessary resources at these Hub’s. For example, the majority of BC’s child psychologist’s reside in the lower Mainland or on Vancouver, while cities such as Dawson Creek have No local child psychology services.” – Parent, Vancouver Island

“My child goes to program 3 times a week. The leaps and bounds he has made is amazing. Without this program he would not be where he is today. He would not be participating in a class the way he is now. His autism funding pays for this program and the loss of it would be devastating to his social, educational and emotional development.” – Parent, Interior BC

“Many of the services my kids need right now are centered around mental health. My 10yo would fail at talk therapy. He might even fail at play therapy. They just wouldn’t be good fits for him. Art therapy, on the other hand, is fabulous for him. It gets at the same goals, but in a way that is more in tune with his way of being in the world. Will art therapists be available in every hub? Music? Equine? I heard a lot of talk about behavioural interventionists in the announcement and I’m very worried that ABA will be the default service offered.” – Parent, Vancouver Island

“Will evidence based practices be supported and provided? Can parents still choose professionals of their choice? I have an OT I have had for years that I need to keep. What about people living rurally? Will services be equitable? I am 2 hours each way from Kelowna. Will levels of service be maintained? What does this mean for school funding for cat G?” – Parent, Interior BC

“My child is 7 years old. I have private OT and SLP services for her. I have to pay from my own pocket to cover the OT cost. Will the new system pay for all the cost or just up to $6000? Can I continue with the same therapists?” – Parent, Lower Mainland

“I am 100% against getting rid of AFU. While I support that children without dx should ALSO receive services, with the changes to DL schooling this is the final straw and if it proceeds our family plans to move out of province. The province should be providing additional services for those without dx without changing services for Autistic children with a dx.” – Parent, Fraser Valley

“I do think that it will be positive that it is based on needs and not diagnosis but I have some serious questions. I have worked as a service provider in the MCFD CYSN programs and was so dismayed with the program that I left my job. It was based on the program that worked best for the “system” and did not meet the needs of the families we served. I hope this new program is not an expansion of this program.” – Professional, Vancouver Island

“I understand the need for undiagnosed children to receive help, but why can’t this be two separate entities? Keep autism funding unit AND open hubs for those without referrals. It seems they’re wanting to use the autism funding to form these hubs without considering those accessing autism funding and excelling with their current providers and services. Especially with COVID19 and many families using their equipment funding to form their own therapy rooms when everything was shut down. Consider the immunocompromised autistic kids who can’t have hub therapy due to COVID19 exposure increase. What are they supposed to do now?” – Parent, Northern BC

“What will this mean for those of us that are low income and cannot pay out of pocket for the resources that our children NEED! Coming from a single mom of two on the spectrum.” – Parent, Interior BC

“Will service levels drop for moderate kids to provide more funding for severe kids ? Will some kids with Autism receive nothing despite a diagnosis” – Parent, Lower Mainland

“Us parents were told by schools etc. that without a diagnosis our child receives no support so we have to go though all the channels, some pay out of pocket to get a diagnosis then you can just take away a system that works well for us? That is not okay. The government needs to leave AFU alone and open these hub centres for people without a diagnosis. We as parents went through the channels and received a diagnosis for our kids, the government should not be allowed to take that away.
Leave AFU alone and open the HUB centres to kids without a diagnosis who need supports.” – Parent, Lower Mainland

“I know families who live in provinces that use this model who constantly have to ‘compete’ with other families to get funding. To get support, you have to really present your child using a deficit model. Even then, you might get the wrong worker on the wrong day who deems that your kid doesn’t really need support, and you get nothing. Any gains that a child makes means potentially losing support. It’s a really traumatic process, and sometimes it has to happen every year. How will the government be determining who gets what funding or support? The benefit of the current model of autism funding is that we can pick providers who align with our values and who have a good relationship with our kid. A bad provider is sometimes worse than no provider. It took me a long time to find providers who don’t take a deficit model towards autism. Will families have choice of providers? What happens if my kid gets paired with a BI who wants to force her to make eye contact, or something else I don’t agree with?” – Parent, Lower Mainland

“The announcement is very vague. My son is 11 (gr 6) and we have stable service providers that he is used to and we are happy with. As he makes the important transition to high school is that stability going to be taken away? Will we have choice in our service providers? How will the the amount of service each child receives be determined? We already max out our current $6000 funding and pay privately to have a service level that we consider necessary and he is verbal and participates fully in school.” – Professional, Lower Mainland

“The AFU funding model is very successful in BC. Why not expand this program to include children with other disabilities?” – Parent, Vancouver Island

“I have literally spent years building up teams of professionals who have earned the trust of my children. If I’m understanding today’s announcement correctly, within a few years, we will received ANY funding for services provided outside the “hubs”. Does this mean that I will have to transition TEENAGERS to new service providers, or find a way to continue to pay for our current professionals out of our family budget? Kids in BC schools are supposed to receive support based on need, not diagnosis. However, our experience has been that our children have not received support commensurate with their needs, both before and since diagnosis. The plan announced today appears to be modelled on the same notion. While kids in the community should be supported according to needs, I have little confidence that this will be the reality. Who will decide the level of need and best services for each child?” – Parent, Vancouver Island

“I am concerned that because my son is older and “high functioning” he wont get services. […] He isnt “severe” and so little help at school as his funding mostly goes to other kids. Worried that with the same limited funds and more kids, will mean will occur by necessity and when less severe kids wont get services. Especially when their not caught till older. I’m a PT myself in the system and rehab just gets stretched thinner and thinner until were no longer effective as we cant do many visits, have huge waitlists and have to triage based on severity. Its what always occurs and services are never extensive enough for all the needs so the less severe cases get dropped or don’t get proper care so more care can be provided to the intensive cases. It isn’t fair to pit kids against one another for services (as occurs in schools already) so that only if you advocate do you get any services for the less challenged kids even with funding and diagnosis.” – Parent, Lower Mainland

“For those of us in rural areas, with a diagnosis, the potential of losing funding for services leaves more questions than answers. How will services be organized and will the rate of pay be equitable for those living in smaller communities, will it be a fee per client system leaving little for administration.” – Parent, Interior BC

“I can only imagine the LONG waitlists and extra assessments that will be a part of this new “system”. This is wrong and now instead of our autistic children being able to get the help they need they are going to be lumped into long lines and waitlists with other neuro diverse children with very different needs. If you really wanted to help children with ADHD, FASD and CP you would work within the public school system to get them designations and get them the help and supports they need. I don’t understand why you cannot support these neuro diverse individuals with out stripping families who have been affected by autism of their autonomy, one on one support and the relationships they have spent years building.” – Parent, Lower Mainland

“Who will determine the amount of therapy and the type of therapy the child will receive? Will therapy occur in blocks, similar to the Ontario based system? For example we are providing 16 speech therapy sessions for the year from March to July when we all know the continuity of therapy ie weekly or bi weekly year round is needed as going 8 months without skills can be lost. Will there be any option provided to keep working with existing service providers, SLP,OT, PT and BI? What if a SP that is provided through a hub is not a good fit for the child? What will the remedy be? With the sheer volume of children needing therapy several times per week year round how can a hub accommodate this? Especially for school aged kids who can only attend therapy after school. Many parents who have after school therapy have had to wait for a long time to get that spot with their current SP.” – Parent, Fraser Valley

“Truthfully it may lead to divorce because without proper support our child will become violent and aggressive again at which time we would have to split our household so as not to put our other child through that again. Especially because they now have mental health problems. Without the services my child has now I truly believe our household could not cope. We are devastated by this announcement. I do however feel hopefully that children with other diagnosis or no diagnosis will finally get the support they need.” – Parent, Lower Mainland

“Even though my child on the spectrum brings $20,000 to the district, he gets very little support at school because VSB doesn’t recognize his social communication and emotional needs as priority compared to those who are aggressive or flight risk. All we have left is our $6,000 from AFU to help him on our own time after school with SLP and psychology. What will we do when that is gone? We need it to help him where the school won’t!” – Parent, Lower Mainland

“Autism families need more support , not less. After my child turned 6 I was faced with choices; suddenly I went from $20,000 a year in funding to only $6,000. Our school system is severely under funded and unsupported, there are not enough education assistants available to fulfill the needs required and now you want to cut that funding as well. This is disappointing and too difficult a burden to place on autism families that struggle daily. You have no idea the stress and pain each family goes through just trying to meet basic needs and have a child that can function in our society. I spend money every month on private tutoring, special diet, educational aids, sleep aids, therapy, a dog to support his emotional well being, special toys, and GPS monitoring because there are not enough staff to protect him from wandering off school grounds, I cannot work because a parent has to be available at a moments notice for him. Its bad enough all help disappears after age 18, how can you consider such cuts for children?! I am horrified at this idea and if it continues through our provincial government then be prepared autism parents to show up and protest” – Parent, Vancouver Island

“I’m a foster parent to kids with ASD, FASD, Down syndrome. Yes I think there should be services for all kids with need, not just certain diagnosis BUT autism is imperially proven to be very responsive to correct therapies. Our school districts only help kids in worst situation. Throwing desks or hooked up to tubes you get support, by the quiet compliant struggling kid gets nothing. CYMH is proof assured that that the government is not able to service kids in need, disgustingly long waitlists, no service got for neuro diverse. Little or no one to one treatment options. How can we trust MCFD or the government to do any better than they do with CYMH?” – Parent, Vancouver Island

“How exactly will there be quicker service, when the problem is not enough people working in the industry?” – Parent, Fraser Valley

“I’m concerned that for kids who may present as a term I loathe to use “high functioning” i.e. able to speak, regulate a percentage of the time, make eye contact, know when to mask etc. may not receive the supports that have allowed them be more successful because they will be deemed “high functioning” and lower needs by someone who doesn’t know them. Needs are also variable. What if something comes up, a traumatic instance can resources be reallocated? Can we change the amount of supports we get?” – Parent, Northern BC

“I am concerned because my daughter will need the funding most in Grade 11 and 12 and the funding cut has been announced for the timing of that. A lot of our funding used now serves the mental health needs of our daughter as well as computer equipment that we we get reimbursed for. I applaud creating these hubs they refer to but in cutting funding, they have basically taken away various parts of the program that do not define access to professionals necessarily.” – Parent, Interior BC

“My massive concern is waitlist. Psychologists, speech language therapists, counsellors, and psych Ed evaluations are all supposed to be available through the school system. The waitlist for these things is years and then they see your child twice. Even in the private sector wait lists can be insane. Some places I spoke to when looking for providers had an 8 month+ waitlist. OT is particularly bad. I cannot see how the government can have a “hub” system that adequately serves the needs of every community in BC. Just look at Child and youth mental health. You self-refer, do an intake assessment over the phone, another assessment a month or three later to see what your child needs and then you wait a year to get in to see a counselor who tries to get you off their case load as early as possible!” – Parent, Lower Mainland

“Freedom to choose providers aligned with type of support needed and approach rather than assigned deliberately from a government designed body. How we will as parents access to funding for therapies needed for our autistic children. Likely many more that will come up as I process this along changes in DL option for homeschoolers now renamed OL.” – Parent, Lower Mainland

“I’m not convinced that the hub will meet my child’s needs. I have found that local systems including the school district and CDC have grossly failed to meet my child’s needs in my community. Just because a person has specific training does not make them good at their job, and there are never enough people in small towns to work with children anyway. I fail to see how creating a hub will draw more qualified professionals and capable workers to a small rural area in the north. I prefer the freedom that the individual funding gives me to meet my child’s needs. I have spent years building up my child’s team members in my small community. Each child is different and needs different people to support them. Sadly, I feel like whatever the government puts in place usually falls short of what is needed, especially in the north. If the hub is located in the nearest town, which is a 45 minute drive away on an often snowy highway it is very unlikely that my child will access the hub in person.” – Parent, Northern BC

“While I appreciate that other kids with be supported, those other kids do have dx’s. There should be a hub set up with funding for those dx’s. How can the Ministry think that taking from one group of individuals and spreading to all neurodiverse kiddos is the answer? I’m concerned that the relationship my child will not be able to access his current therapists that he strong relationships with because they are outside of our ‘hub’. These key relationships with my child and our family is what further propels my sons development at a SLOW and steady pace. I have sacrificed employment to support my child and his developmental needs. Just has he starts to make progress, where in 4-5 years from now when he’s 15-16, and starts to become self-sufficient I can look at work.. the whole system is going to change.” – Parent, Lower Mainland

“Publicly funded programs have historically been poorly run, underfunded, inaccessible, limited, and designed specifically to meet ministry markers/goals and NOT funded adequately to provide specific services that are of actual benefit to the individual autistic child. My children do not perform for others, ie they will not participate in traditional counseling, and will not work on “goals” by completely workbooks and completing online programs with or without support as offered by our local support services. They require engagement from individuals who understand and focus on healthy relationships first, before carefully and subtly working on “goals” that are incorporated in an activity THEY enjoy. Every individual from a government funded and delivered program we have encountered has failed miserably at this and have not successfully assisted my children in any way to date. Having individual autism funding allows me to choose a service provider who actually meets our needs.” – Parent, Northern BC

“I am concerned that being a ‘needs’ based program that my daughter who masks would no longer be eligible for services. Will there be options that are not behavioural therapy, for example DIR floor time? Will parents be able to choose a practitioner. Say for example an occupational therapist? Having tried numerous it often takes more than one practitioner to find a good fit. How long will the waitlists be?” – Parent, Lower Mainland

“For low income families like ours, that is the only way we can afford expensive items for at-home that can meet our son’s therapy goals. I am terrified that this will be a huge regression to a model that I see from friends in other provinces and how their children’s needs are never met. I hate the idea of HUBs at that means a one-size-fits all model which doesn’t work since we all know that our kids aren’t all the same and they need more options and not less.” – Parent, Vancouver Island

“I work in the same field, in the same small town that I live. I have purposely chosen smaller run private services to avoid conflict of interests and my son having to access services from my colleagues or neighbours. How can flexibility, choice and confidentiality be offered in the hub model?” – Professional and Parent, Lower Mainland

“While it appears there is the intention to provide access to services for children with all different types of needs, and aims to provide services to those who do not yet have a diagnosis, I am concerned that there may not be enough treatment services available to meet the needs of all the children requiring those services at the proposed hub centres. In addition, there maybe even longer waitlists for the hub services and then a return to those with financial means being able to access more timely and quality services. I hope that treatments continue to be evidenced based and that there are provisions to support testing for diagnosis like ASD, as reaching a diagnosis is important to be able to understand what the best treatments are going to be the most effective.” – Parent, Lower Mainland

“I am so nervous about this. I live very remote on Haida Gwaii with 2 young level 3 native children and I have to hire a OT to travel here from Kitimat because there is not one OT here on island. There is no PT or BI or anything other then Speech. If my kids don’t get funding, no one is going to spend the money to get a OT over here just for 2 kids.” – Parent, Northern BC

“I feel very unsettled. Our family will get lost. We will fall through the cracks. I will have to actively advocate again, continually. My initial feeling and response is that I feel greatly troubled and unsettled. I spent many, many previous years advocating for my children; years to get the diagnosis. I was finally trying to relax and feel ok about where we were with AFU. Now, the trauma those years put me through is flooding back to me.  I don’t want to have to continually advocate and fight for my kids. Those years have eroded my ability to tolerate any additional demands from me. Most families that have gone through the process of having their children diagnosed are extremely fragile. I feel heartbroken.” – Parent, Interior BC

“What about families who have an existing team with professionals in a number of different communities? What if our ‘hub’ is a prohibitively long drive? (For example, I live in the eastern lower mainland and have never accessed the Pacific Autism Hub in Richmond – it’s a prohibitive distance).” – Parent, Lower Mainland

“Where will these hubs be located? How will smaller communities access services? If smaller communities (under 2K population) aren’t invested with a hub, will the government subsidize the means to access a hub? How will those subsidies be prioritized and funded/refunded? Will we have any say in who provides the services? What steps will be taken to ensure productive therapy relationships will be maintained? Will those be maintained at all? What will the criteria be for deciding if my kid(s) receives service(s) if it’s no longer tied to diagnosis?” – Parent, Interior BC

“After searching and trying so many options, it seems cruel to take away a team that is working for and making huge improvements in progress for my son. Clinics don’t work. Groups don’t work. Scheduled meetings don’t work. What works for us in flexibility, and I’m scared this new plan is going to mean that lots of children won’t get the services and choices they are getting now. It seems like a step backwards not a step forwards.” – Parent, Fraser Valley

“Our son is what many would consider “high functioning.” He did not qualify for any OT or speech therapy in school. He barely had enough EA support and we were forced to pull him out of school. We rely on his AFU funds to support his complex behavioural needs. Without AFU, we will just be put on another waitlist for services. We have been on countless wait lists since he was 17 months old. We aged out of many programs before even being able to access support because the waits were so long. How on earth is a support model that is then opened up to every single kid supposed to be able to support those with higher functioning autism?” – Parent, Fraser Valley