Discussion #1 – The Parents and Professionals Plan

I support the P&P plan to keep individualized funding for autistic children and their families as well as streamlining the diatnostic/funding process so that autistic and other families that face special needs get more streamlined and quicker access to support. I do not support a hub system where individualized funding doesn’t exist anymore.

Please don’t take individual funding away.

I am not really sure where to start in providing this feedback. I have worked to provide therapy services and to help manage other services to children and their families in this province for 26 years, and I have also had to seek out my own resources and supports for my child and family.
I am a very thoughtful and open minded individual, and I’m very good at seeing the big picture. I have worked with thousands of families and other service providers in my area, and I do have quite a few thoughts and ideas. I may answer the questions posed as I go through my thoughts, but it is hard to give true feedback when the questions posed are so narrow.
Here are my thoughts:
Question 1 (about Individualized Funding):
• I love the Vision statement of the P and P plan – I think that all of us share that vision. However, I don’t believe that individualized funding is the right approach to achieve that vision while being equitable to all children and families. The P&P plan states on page 3 that “96% wanted individualized funding.” This is a misleading statement. This survey was done with families who are already accessing individualized funding, not a random sample of families. And when you consider that the alternative for those families is a severely underfunded public system, OF COURSE they are going to choose to continue individualized funding. I do understand that having choices is ideal for families when it comes to finding services for their child. However, if that means that services cannot be equitable for all, then to me it comes with too big a price.
• I 100% agree that the current ASD diagnostic system is absolutely broken and is leading to massive barriers for children receiving the services they need. For one, I agree that pediatricians should be able to provide provisional diagnoses when there are certain criteria met. For many children, a diagnosis of Autism is crystal clear, and families should not have to wait 2-3 years to get that diagnosis (no one should). If services were not diagnosis-based, FCC’s/CDC’s could complete functional assessments and then provide the services needed right away (as long as the funding was in place and sufficient). The current system in place is also a very inequitable two-tiered system. Families with money can get a diagnosis in half the time of a family with meagre means or lack of social supports. Absolutely unfair and wrong.
• I think that MCFD had the right idea in the beginning – creating a publicly funded system with enough resources available to provide the services needed to all children in the province, based on need rather than diagnosis, and without individualized funding. If the current funds being spent on individualized funding were pumped into a more consistent, better managed public system, all children and families would be on equitable footing. Unfortunately, it does not appear that option will ever again be on the table, which I find very disheartening. I do understand families’ hesitancy to let go of the IF model, but I think that is possibly because they have not had access to the publicly funded services they need.
• It is also very frustrating that the only children we seem to be discussing are those with ASD, FASD, and those on the At Home Program, because they are under the CYSN umbrella. There are so many more children in the province who are served by CDC’s and other agencies, and their needs seem to be getting forgotten. Many of them have needs just as significant as those who fit in the CYSN umbrella but have no other options.
• On page 8 of the P and P plan, it states “Without individualized funding parents have no choice but to use generalized services.” To imply that the services provided by a CDC are “generalized” is really offensive to me. In a CDC, the therapy staff are highly trained and capable of providing individualized services based on best practices and assessment of a specific child’s needs. All services at my CDC are based on assessment of a child’s needs and the family’s priorities. We have not been able to provide a specific ASD-based “Behaviour Intervention” program, not because we do not have the skills and expertise, but rather because we DO NOT HAVE THE FUNDING REQUIRED.
• Page 8 also says “For over 20 years in BC, individualized funding has achieved better outcomes for more children than other models of providing services.”
o First, as far as I am aware, individualized funding has been the only funding model available for intensive services for ASD in the province since cancellation of the publicly funded EIBI program (which was highly successful for the few children who could access it)
o Second, there has been no method of tracking the outcomes of any of these programs, so I really question the accuracy of that statement
• In the current dual public-IF system, the following is true:
o Children with ASD have access to publicly funded therapy supports AND individualized funding to access enhanced private supports. This is a duplication of funding and means that children with a diagnosis of ASD have access to a lot more services than those without ASD or who are waiting for a diagnosis. This is not an equitable way to provide services.
o All children with ASD have the same amount of individualized funding, whether they have significant needs for support or minor needs, which makes no sense. The children with significant needs cannot get what they need based on this model. Much of the funding for children with more minor support needs is then being wasted on frivolous toys and equipment just so that parents can “use up their funding”.
o School aged children who are eligible for the At Home Program can have access to SAET funding to access enhanced therapy supports; however, since the current School Aged Therapy public funding is so incredibly low, they are effectively just bringing their services closer to a needs-based level. As a therapist who has worked with school-aged children for 26 years, it is really demoralizing to have to continually explain to parents that we just don’t have the funding to meet their child’s needs.
o ALL OTHER CHILDREN (who are the vast majority) only have access to publicly funded programs, and are often turned away because the public system does not have the funding to meet their needs
o Families with higher education, social supports, financial resources and living in urban areas can access much better and more frequent services than families without.
o The amount of IF per child in this system has not changed in 2 decades despite significantly increased costs of services.
• I agree that individualized funding has worked very well for some families, in places where private services are actually available (but again, the only reason they are necessary is because the public system is not properly funded). However, the quality and availability of those services is incredibly varied throughout the province, and it requires a ton of work on the part of families to find the services.
• Providing services for children and families is a complicated process because of the immensely varied needs of those children and families and their varied resources available. A centre like an FCC or CDC has the ability to see those needs from a very wide lens and make the time to coordinate the services for those needs. Using an Individualized funding model means no more big picture coordination and sharing of resources. Each private for-profit agency is out to meet its own needs, ultimately.
• The quality of private programs is not monitored or ensured by anyone other than the family, the colleges and professional associations of the individual service providers, and the RASP process (only for under 6). In the publicly funded system, all programs funded by MCFD are required to go through a rigorous accreditation process so that high quality of services in all areas can be ensured. Again, it is really offensive to imply that those services are somehow “generalized”. The CDC’s in this province have undergone decades of quality improvement to ensure best practices.
• In a fully publicly funded system, the FCC centres would be able to effectively manage the funding available to ensure that everyone has equitable access to appropriate supports. The skilled and trained staff at those centres (who already exist) are perfectly capable of setting up services to meet needs AS LONG AS THEY HAVE ADEQUATE FUNDING TO DO SO.
• In a solely individualized funding system, parents would be heavily burdened with managing their child’s supports. Again, for families with adequate education, literacy and language skills, mental health, social supports and financial resources, managing the I.F. may not be such a huge burden. For a majority of the families I have served, this would be a significant source of stress.
Question 2 (about coordination between ministries)
• When MCFD was created, the goal of the Ministry was to bring all services for children under one umbrella, in order to prevent the consequences of children slipping through the cracks of multiple systems. Unfortunately, this amalgamation was not complete, and as stated in the P and P plan, it is still sometimes a confusing maze for families and service providers. There are quite a few services still provided by MOH and MOE, which must be then coordinated with services from MCFD. If there was a way those ministries to could sit down and discuss those discrepancies and find ways to bring them under the MCFD umbrella, it would be so much easier for all of us. For some specific examples:
o SLP services provided by MCFD, MOE and MOH. It seems like each community is completely different in this regard, which is crazy. In our large community, MOH and MCFD have equal contracts available for SLP, so the managers of those two programs have to waste time every week coordinating their services to avoid duplication. If the contracts could be merged under MCFD, it could be managed by the FCC.
o Equipment short term loan services being managed by MOH. When a child needs a short term loan of medical equipment, they must go through the adult stream MEPP program. The staff of the CDC’s have incredible difficulty navigating that program because they are not MOH employees. All medical equipment for children should be managed by MCFD and follow similar processes to the At Home Program and the long term loan program.

I feel that having a diagnosis should immediately grant a basic level of funding, with additional amounts being available for children/youth with higher/more complex support needs. This is due to the following reasons:

– If funding is based solely on a child’s functional needs, then a huge amount of time and resources must be wasted on constantly assessing and reassessing the child, as well as filling out paperwork, which does not help the family at all. In fact, it burdens them. I have been on too many waitlists, spoke to way too many “coordinators” (who were all well-meaning but ultimately ineffective), and filled too many paperwork for my own child to count. This funding on bureaucracy would be much better spent on direct therapy or supporting the family instead.
– Children, especially those with behavioural challenges, may act differently on any given day depending on their mood, health, and daily activities, and a ministry worker who sees the child for only a couple hours simply won’t see the full picture of all their needs.
– A lot of developmental disabilities are life-long (i.e. autism, FAS, Down’s syndrome), and it is incredibly stressful for parents to worry that they may get help for one year, and then as soon as their child makes a little bit of progress, that help may get taken away. In the case of my son, a guaranteed individual autism funding has allowed us to form long-term relationships with his therapists, who knows him and has learnt how to work with him, rather than going through a carousel of rotating service providers.

I understand that not every family is able to (or want to) manage their own funding and search for their own service providers, in which case MCYD may offer to have a coordinator to manage affairs for them, but for the many families who want to handle things on their own, the choice for individual funding must be offered. This is the most effective and fastest way to support families without wasting tons of money on huge family centres with excessive ministry staff.

Things that should be considered for funding levels:
– child’s functioning across all developmental domains (including regulation and ability to participate in their community) and needs across all developmental domains
– family capacity and supports
– specialized equipment needs and supports

I work in early intervention so I see the need for more collaboration between clients shared with MCFD protection and CYSN streams, public health, mental health, education, and community service providers. Many complex children have huge teams and so many people involved, and true collaboration is difficult because of time wasted trying to connect with team members.

“Autism BC survey: 1,563 parents/caregivers 96% wanted individualized funding” – This was quoted in the document but I find it misleading. I am a parent of an autistic youth and I wasn’t surveyed. Frankly, as much as my daughter’s funding seems helpful in theory, it is so challenging to use there doesn’t seem to be much point. I would rather have more programs funded accessible to her as a youth. She also doesn’t want 1-1 therapy at this age even if I could find someone so it seems like I don’t really have choice even with a diagnosis and funding. She wants rec programs and programs where she can hang with other kids like her. Are we listening to the kids too? Also if only Autism BC parents are being surveyed and listed here, is that really representative of all kids – what are the parents of other disabilities or undiagnosed saying? Just curious.

Determining funding. Yes to diagnosis because all autistic people need support. Those who are “high functioning “ (as an autistic person, I don’t like this term because it sounds like no support needed) tend to be better at masking and hiding their difficulties and end up with severe mental health issues. I’m considered “high functioning” but due to lack of supports was living with mental health issues and extreme chronic stress. I’m now on disability due to health issues. I use to work full time, but I developed a chronic illness (ME CFS). I’m an example of what happens when there is no support.

However, functional strengths should also be considered. My teen hasn’t showered or brushed his teeth in months due to sensory issues, he has ARFID and has no muscle strength due to being sedentary. He needs 1:1 support for all of these things which is expensive. $6k from AFU does not cover it, yet he does not qualify for the At Home program because he’s only severe in 2 categories.

Re consideration of families quality of life. I’m on permanent disability, my teen has been with an online school at home for the last 5 years due to school trauma (no support given), and my young adult autistic step daughter lives with me, who is in autistic burnout and is having suicidal ideation. Yet, I’m still on the waitlist for respite. Respite should be available to all families. Yes, it’s expensive, but you have to look at lomg term health outcomes. Caregiver burnout leads to medical issues which cost money as well.

I’m not a fan of how AFU is run, or MCFD in general. I have zero communication from my social worker. Not sure the point of having them when they’re so overloaded that they can’t be effective. I don’t trust MCFD and think perhaps everything should be moved under health. Education does need to be included however. Even though my son has a G designation, he got zero support or access to that funding. Giving funding to the school district does not work. Maybe there should be a general fund for undiagnosed needs, but every autistic child must have direct support to succeed in school and should have direct access to that funding. Homelearning for my son was not a choice. It was a desperate decision to save his mental health.

Also, as an autistic individual I am wholly against ‘evidence based’ ABA. ABA teaches autistic people how to conform. This has mental health consequences and does not allow autistic individuals to form an identity. The amount of effort required to ‘appear’ normal is monumental and leads to burnout, anxiety, depression, suicidality etc. (my young adult step daughter is an example of this). We need to have a wider discussion and true acceptance of neurodivergent brains. The intense interests autistic people have can be so beneficial to society, but at the moment, it’s more important that autistic people learn to make eye contact (this is painful to me and I can’t focus, so need to look away, but this is considered rude), say please and thank you, don’t stim, because it looks weird or makes others uncomfortable. I could go on. Normalizing autistic communication is very important.

There needs to be more help for children with disabilities in the school districts. Not every school district is the same and not every school has the same amount of human resources.
The shortage of funding in the school district causes children to fall through the cracks and not thrive. Especially kids who are undiagnosed neurodivergent or living with ADHD. ADHD does not qualify for direct support. In school.
Waitlist for assessments are long, and most people have to go private, which is costly.
There needs to be more supports in the school system to prevent co-occurring disorders for neurodivergent kids, who often develop secondary disorders such as depression, anxiety or behavioral issues.

Q1: I believe funding should be based on functional strengths and needs. Currently, we see children with Global Development Delay, ADHD, complex trauma and mental health concerns, Developmental Coordination Disorder, FASD, and many more diagnoses not served by either Autism Funding or the At Home Program. That said, all children within a diagnosis category will have significantly different needs.

My concerns are:
– how will functional needs be assessed? If it is only assessed based on ‘behaviors’ that are observable and disruptive (especially to classrooms), then children who are struggling but showing it differently (e.g. selective mutism) will be missed and fall through the cracks. The ALSUP assessment by Ross Greene may be a useful tool for school based needs assessments.

– Who is going to assess these needs? If isolating assessment to one particular professional domain (e.g. behavior consultants, SLPs) then the needs will not be accurately assessed, as no profession can accurately assess others domain e.g. behavior consultants are not able to OT needs. This would also defeat the purpose of a multidisciplinary approach. A potential solution is for the assessment process to be completed through the hub with each domain, with children first being screened for eligibility and then assessed for need. This is similar to the BC Centre for Ability’s model.

– How will the total and individual funding amounts decided? Currently, what works well with the AFU and AHP funding models is that there is public understanding, expectation and standard for what each child will receive. This keeps the government accountable to reliable continuous funding. My concern is that is funding amounts become variable, then funding cuts could be made to the total hub amount that trickle down and effect individuals. A potential solution is to have a base rate that each child involved in the hub is awarded and then this amount grows based on need. This could keep the government funding amounts accountable.

– How will family needs be considered? Family needs will have a significant impact on access to services e.g. single parenthood, loss of income, rural living, and more. Additionally, family’s needs will be best met by having the option of choosing different service providers. For example, if a family feels bias or prejudice from their assigned therapist or the therapist’s therapeutic approach does not work for the family’s approach, I believe they should have the right to choose a different therapist.

– How will administrative fees be considered? The risk of having a total amount of money provided by the government that is distributed by hubs is that a large portion of the funding will go towards administrative costs of managing such large hubs with 20+ professions (e.g. interdisciplinary meetings, case management, reception) rather than direct therapy and consultation for children.

Q2: Currently, all Ministry’s work segregated from each other and from private practice therapists. I feel a clarification of roles and consistency in approach is needed from all Ministries. For example, it is very confusing for parents when two different behavior or therapy plans are being provided from different agencies. The Alberta FSCD programs have lots of examples of successful collaboration.

Funding hubs cut out private service providers and small businesses primarily run by WOMEN in a women dominated field. Is the expectation that the service provider will need to subcontract out of a hub to access funding? Does this mean that service providers are forced to take a pay cut?

My Child’s Autism diagnosis afforded him $22000 per year until he turned 6. The school now gets 16k of that funding, most of which is allocated to other students. I have petitioned my school district in a previous year to bring in an additional EA because he NEEDED more support. the position was created, the support was put in place, and the school administration relocated that EA elsewhere within 2 weeks. The system is broken and unless the education system that has our children for 6-8 hours per day is adequately staffed and funded, this feels a bit like an unwinnable battle.

Needs based sounds best on paper – but given the scarcity of funding in the education system and the wait times for things like respite, I am quite confident that moving to a needs based model would only result in more youth who have support needs but aren’t “Bad enough” falling through the cracks. Please do better.

I strongly believe when funding is provided to an agency and that agency offers services to their community there is less wasted dollars and families get better services. I have worked with individual funding and many times family’s struggle to get the services they need for their child. I work for a child development centre and children get better care. The staff are experienced, and the agency meet standards to ensure funding is used for the clients. I have witnessed individual funds being wasted just to use up the yearly allotted funds by families. Child development centres support all children with diagnosis and needs.

I think the Ministry has to look at what they are offering and look at the statistics of the services that are funded now. We are CARF accredited and are accountable for the funds we receive; I am concern that the with the new FCC model, long time community agencies will struggle and close. I think the current ministry model in our region has worked well and collaborative for many years.

There is a lag in making childcare inclusive for all children. Providers who participate in the Childcare Fee Reduction Initiative (CCFRI), of which most childcare providers do, are supposed to accept all children and be able to care for all children. In reality, there is regular discrimination against children with disabilities where they are being denied places at daycare.

In speaking with Childcare Resources and Referrals (CCRR) and also Supported Child Development , representatives from both organizations, confirmed they are aware of this discrimination but their lack of a response shows a complicit acceptance of this discrimination because they are not funded to enforce the compliance, or they are not empowered to enforce the policy. Families with disabled children are facing not only all of the typical economic pressures all Canadians families face, but they also face the exponential responsibility for funding the gaps in treatment or therapy that services are not able to provide and they also have the responsibility of caring for their children into adulthood.

These families must be empowered to adequately be able to care for their children in all ways, including financially, by having both parents be able to earn an income. Supporting families in the early years, investing now, means less supported could be needed in the future. Please some be “a penny wise now, and a pound foolish later.” Please don’t wait for families to be severely behind financially to finally get assistance. Help families from the beginning.

We desperately need a system that provides individualized funding based on the rights of each child/youth to be supported and receive equitable access to services. A decision based on reports from parents, health professionals, and educational members, and requiring analysis by people and not just a tick-boxed-based category system. As someone with children who receive minimal support and funding for their complex needs, while one child in our family receives easy access to autism funding, the disparity is striking and heartbreaking.

A system that can access information from other ministries is the only way to streamline the process and reduce the overwhelming number of forms demanded of parents. Parents without the language, education, or experience can be overwhelmed by the current system and it can deter them from even expressing a need, never mind requesting help. Children who have been adopted from foster care and children in foster care currently should also be given access to the system with information from the Child Care Ministry on the relevant background and needs of the child and family. I have personally dealt with the At Home program, which determined my child with severe learning and language disorders and FASD did not meet their criteria. At the same time, the wait list for Child, Youth, and Mental Health was over a year, and the school could not provide counselling. We found some support through Post Adoption Assistance, but we need to document and justify how our child isn’t “cured” and still requires support every two years and how the emotional toll this takes is harmful to parents.

Ideally, all information from all the ministries would be automatically and digitally fed into one central system. Then, a person or team could review and identify support and funding requirements, which would be communicated back to all the same caregivers, ministries, schools, and health professionals involved in supporting the child/youth.

As someone with a child with autism, I do not agree that the separate funding system for only children with autism should continue as is. Instead, a system should be created that includes all children and their unique needs and is accessible to all families without demanding excessive demands of documentation, advocating, repeated paperwork, and emotional demands.

I believe need should be based on both diagnosis and functional assessment. Additionally given barriers (cost, delays) of assessment, bridge funding would benefit families awaiting assessment. As a solo professional mom and advocate for a kiddo with FASD I would not want support to be based on family capacity. I have capacity, and am on the verge of bankruptcy as a result of absorbing the costs the therapies, assessments, respite.

Education is needed across all 3 key ministries. We have had a school breakdown. Capacity at schools to become educated is low. Supports are insufficient. Supporting schools for better training in diverse needs and for more supports is critical.

Affordable child care is non-existent for school aged diverse needs children in my region. As a parent who can only work when her son is in school, this leaves me unable to work in summer months and other school breaks. I would say school age affordable child care is an imminent need for collaboration. This would be in the form of education, training and funding for extra supports.

The Plan is contradictory in some ways- individualized funding, but one-stop assessment and integrated services delivery. Aside from the individualized funding, much of the Plan describes the CYSN Family Connection Center (FCC) model. FCC services are research-based, child and family focused, strength-based, and designed to meet the individual needs of children and youth, with supports to the family. The one-stop physician or pediatric diagnosis issue can be added to the FCC model, with additional funding and may be very helpful; but currently a diagnosis is not required to access FCC services- which include comprehensive and functional needs assessment; SLP, OT, and PT therapies; Behavioural Assessment, Consultation, Positive Behaviour Support Planning and individual Intervention/support; direct Family Support, parent education and coaching, and group-based supports; Child and Youth Worker supports for community engagement and integration; life skills development and peer-group activities across the age-span; Inclusive Child Care services in day cares across the community; access to mental health services; and collaborative service planning with each child’s Circle of Care. The FCCs serve children and youth from 0-18 years of age, and all services are free. Services are centrally delivered in the conveniently located FCC, but also in a variety of other locations across the community, or right within the family’s home; all according to the family’s needs and preferences.
The Plan is correct in stating the ‘system’ needs much more funding, and more training availability for specialized clinicians and therapists.
The individualized funding approach may work very well for some children and families, especially in urban communities where finding services to purchase may be easier. However, many families find that purchasing services is a laborious and very challenging process, and they may not know what specific services their child actually needs or how to integrate complementary services, and the service needs likely will change over the span of childhood and adolescence requiring an ongoing service access process. And there are so many families that do not have the time, energy and personal resources to navigate the process to access the funding, find service providers and travel around their community, or to another community, to access them.
A well-funded ‘system’ that can provide individualized funding for those families that prefer that, and also the centralized service delivery model of the CYSN Family Connection Centers (across the province), is probably the most responsive way to serve families with children with diverse needs in BC.

I am an IHA Early Childhood Development Speech-Language Pathologist.
Q1: Funding should depend on functional needs primarily and diagnosis afterwards; maybe funding baseline for identified needs at first and then increased upon assessed need and/or diagnosis. Diagnosis does not equate to need (for ASD diagnosis, too – so flat funding doesn’t really seem equitable to me either). If a family has clear needs relating to quality of life, then this should support and fast-track their application for funding. The document recognizes that multiple professionals can identify children at risk (e.g. in Alberta, SLP could refer directly to ASD diagnostic testing); expanding professionals that can support without getting tangled in inaccessible referrals will help. Additional services for severe and profound disability is crucially needed. Children with GDD or ID are left floundering and without support because there is no funding attached/they do not qualify for supports but need supports just as much (sometimes more) than children with other dx like ASD. I have observed a serious impact on parents’ mental health in these cases.
Q2: Expanding the At Home program is a great idea, especially for more rural areas and low-income families that cannot afford/access transportation, as well as providing whole-child supports (i.e. supporting needs in REAL life, not in a clinic setting). The document’s comment about ministries not being aligned is true. We work closely with MCFD funded CDC to try and align our policies on a small, community level as much as possible, but are often restricted by “higher level” procedures/policies (or frankly, lack thereof). First of all, have clear policies that actually make sense and are transparent to all professionals. And hire more front line Allied Health staff… a barrier for collaboration is high levels of burn-out and huge caseload/workload – collaboration and change takes time and energy that overworked staff just don’t have.