Discussion #3 – BCACDI’s Service Delivery Transformation Proposal
Notice: This discussion is now closed. All comments have been collected as part of the overall work to design an effective system of services for children and youth with support needs. For an overview of other discussions related to children and youth with support needs, visit the online discussions page.
As part of its commitment to engage in meaningful dialogue with multiple audiences on the future of children and youth with support needs (CYSN) services in BC, the Province is promoting open discussion on important topics related to CYSN services through this online engagement portal.
On this page you can find a plan submitted to the Ministry of Children and Family Development (MCFD) by the BC Association for Child Development and Intervention (BCACDI) proposing a transformation of service delivery in BC for children and youth with support needs and their families – BC’s CYSN Service Delivery Transformation.
The ministry is asking parents, professionals, service providers, communities and others how they might envision a future of CYSN services in the context of this paper.
Background
MCFD is working to understand how children and youth with support needs can be better served. To ensure the system is as effective as possible, MCFD is undertaking an engagement process to gather ideas and suggestions from concerned parties.
This discussion forum is another method in this engagement process. In this case, a submission to MCFD from a third party is posted here for review and comment. Please note that the content in the submission reflects the views of the author and does not imply endorsement by MCFD.
Summary of the submission
BC’s CYSN Service Delivery Transformation (the paper) was developed by BCACDI, which is made up of 41 member agencies that advocate for and deliver services to children and youth with support needs and their families across BC.
The paper proposes solutions for provincial CYSN services in the following ways:
Maintain an agency coordinated not-for-profit structure, increasing and expanding service provision: This would include integration of mental health supports and developmental services and expansion of service provision responsibilities to include family support and behavioural therapy supports in all communities. Currently, not all non-profit agencies have the ability to provide these expanded services.
Maintain the existing individualized funding program structures for children and youth with Autism Spectrum Disorder (ASD), as well as create a more traditional funding model (e.g., contracts with community based not-for-profits) for agency coordinated behavioral intervention services. This places value on a family’s right to choose the service structure that best suits their needs and provides access to additional services (whether non-profit or private) to support families with more complex needs.
Strengthen and stabilize service delivery structures by avoiding procurement processes that destabilize services and community relationships; undertake a proactive workforce strategy; and improve accountability of investments and services through codeveloping service quality benchmarks
The proposal and its recommendations are informed by reports and research that demonstrate the challenges experienced by families and service providers. For example, some of the challenges identified include:
Mental health of children and youth with support needs, caregivers and parents
Difficulty navigating the current system of services due to complexity of contracts, multiple organizations delivering services, and lack of general awareness of services that are available
Workforce limitations across children and youth services that hinder families’ access to the services and supports they need
The paper proposes that agency coordinated services in the social sector – which are provided by local non-for-profit organizations, led by citizen board members and guided by client feedback– are well positioned to facilitate coordination and communication of therapies, programs and services. Under one organization with its network of community partners (including Indigenous and non-Indigenous and non-profit, public and private sector partners), multi-disciplinary teams of professionals would be involved in the intervention plans for a child or youth and their family.
MCFD’s response
The Province acknowledges that a family-centered approach to services for children and youth with support needs is important. This can mean different approaches to service delivery for different families.
At present, MCFD provides funding to community-based agencies to provide coordinated services (e.g., rehabilitation therapies through the CYSN foundational program stream). MCFD also provides individualized funding to families through the Autism Funding program. MCFD is keen to understand how this model is working for families across BC, particularly in terms of wraparound care, individualized planning, and service access.
Discussion question
In order to make good use of ideas from concerned parties, the Province is asking you to consider the following question for your review and comment. Please use the comment box below to respond.
- What role do agency coordinated services have in meeting the diverse and individualized needs of children, youth and their families?
SOME families do not have the personal resources to understand their child’s diagnosis and navigate our current health care system.
A utopic “agency” coordinated service would most importantly educate families (in their language) about diagnosis/potential silioqui of the conditions and the AVAILABLE resources within the agency setting. Often children with complicated diagnosis have urgent needs that need to be addresses by multiple therapists at one time: ex. a 1 year old with Cerebral Palsy would benefit from a SLP/OT to address feeding and seating needs, a PT to address weight bearing strength and ROM, SLP for early language, Infant development for attachment/play development, and Family Support to access funding for equipment. For these programs to have the most success, it is best that they function as a simultaneuos service/team that can communicate using the same platform. Furthermore, I believe our province needs to consider “Therapies” as part of their medical model and not a separate service. Currently therapist do not have shared communication with doctors/hospitals or health units. They do not have access to imaging, lab tests, swollowing assessments, chest xrays to help them address a families needs. In an understaffed system, precious time is used writing letters, reports and making requests for digitally saved information that should be at their finger tips.
The agency coordinated services that my daughter (who has multiple special needs) has access to in our community are fantastic! We have developed a trusting, caring and excellent relationship with each of the therapists there and the centre. The therapists have supported one another in collaboration by sharing meeting notes, having team meetings and provided constant communication with us. This one centre has been able to provide a central support network for my daughter in a way that is beyond compare and I would not want to change it for anything. I have enjoyed our relationship with the centre and feel deeply indebted to them for all the support and help they have provided over the past 4.5 years. Given that we were new to this city and had no community support this centre was a life line for us and our daughter.
It would be beneficial if Autism support and funding was needs based instead of a blanket amount which does not provide a sufficient for therapy and support for a severely affected child. I have a severe non-verbal autistic child that requires far more services and support that is available with the funding provided. It would be so beneficial to tailor an individual plan for support with each child and those that require additional assistance are provided with the possibility through additional OT, SLP, BC therapy services.
Finding suitable agency coordinated services is also a challenge and I do like the idea of hubs where all these services could be accessible in one place. It would also be helpful to coordinate additional support for the families with counselling services, respite availability and assessment based on the severity of the child.
Simplifying the current system as far as managing the funds, reimbursement, setting up suppliers may occur with a central hub type system and make navigating all the various programs simpler and in one place. My only concern would be waiting lists and having adequate staffing to manage such a significant change to the current system.
Thanks for allowing families to have input.
That being said, I strongly disagree with changing the model of funding in the way proposed. This way means more people will be in the system, with longer wait times, and it will take away services from those that need it, as it will be based on what the majority needs instead of an individualized program. Although the current set up is not ideal, changing it they way proposed will destroy the individual needs being taken care of currently. And as we all know, education and healthcare are currently consistently failing our kids and communities.
Currently, in the autism funding program, wait times are awful for getting anything processed, and for getting children assessed, especially females, however, once in, we can thankfully individualize what is needed and source the best person for our kids. That won’t happen when kids have to go to a set program. If they don’t connect, which autistic kids need to feel safe in going to a new space, they will just be staying at home, simmering in their anxiety and loneliness.
I would like to propose actually funding the needs of all kids. Keep the system we have, but increase funding, and make the process easier adn not all online. Or, with a mixed model, increase funding, with more focus on the differences between males and females with autism, and include varying needs, such as adhd as well as fasd and anxiety. A mixed model, where those who need more individualized programming, would better help all kids than what you are proposing. It could be done concurrently, or by having the group model as a first start, allowing those who don’t fit in it, to get assessed for an individualized program by showing that their child needs a one to one set up, or needs something different than the group model. Alternatively, you could just have individual programs vs group programs available for everyone… say a list of all providers and a dollar amount everyone can use per year. For instance, have 100 horse therapy providers in the area, 100 music providers, etc. and allow funding per child based on needs, rather than having set group programs that don’t help children with anxiety, etc. and are over full. Then allow individual BI’s for in community individualized needs like learning the bus system, scripts for social skills, learning to cook, etc.
I want to give you an example how group programs currently fail kids that is already in our community. In our area, we have a ‘group program’ called the Foundry near us that was phenomenal when it started. However, once people found out about it, it became impossible to access. There is only one leader for each program. There are limited times and program sizes. My child went to some of the programs at first that were very varied. When that leader changed, my child would no longer go as the programs became very repetitive and my child didn’t connect with them, nor did the leader help anxious kids connect. Also, the psychiatrist is overwhelmed and impossible to get in to unless kids are suicidal. They also have a once a week ‘free access’ and that requires a lineup system where you can sit for hours and not get in. My kid won’t sit that long, and if I can bribe them enough to stay, which I did once, and then doesn’t get in – well they refuse to ever go again as the experience was too overwhelming with noise, people, sitting still so long, etc. They also use peer support vs. professionals for an ‘overflow’ system of support, but don’t allow parents in, nor are the peers trained well. This doesn’t help my child, who regulates off me and wants me there or won’t go to counselling and who needs someone well trained in PDA Autism and anxiety. The people there are fantastic, they are overworked and under appreciated. However, they can only do what they can in the system and the space.
I could go on. Please reconsider your moving to a group program.
An agency that can coordinate services with families can mean the difference between getting intervention and not. I see too many families that don’t access the funding and services they are entitled to because they are too overwhelmed or don’t have the capacity or organize it. They would much rather stay at the agency they are at (non-profit) but the waitlists are too long and they aren’t getting the services they should have. An agency that can provide a variety of services helps the family know where to go when they need help. An agency that serves a variety of children (not just one diagnosis) is also more capable of coordinating services and meeting the needs of any child/youth/family that needs support.
We need supports for adults who never had the chance to be diagnosed in their youth. ADHD and autism assessments are over $3000. Disabled people can’t afford that, since we make significantly less money on average.
I believe that non-profit, government contracted services can play a vital role in supporting families who are overwhelmed with having to take on the coordination of their child’s care. Having CDCs offer ‘one stop shop’ options for intervention that are rooted in developmental knowledge and values that put the child and family’s needs first is important and should be an option for families. In an age in which neurodiverse affirming care is becoming more sought after, the CDCs have a leg up in this regard. They already employ professionals who are seeking to take this on as best practice. While some non-government funded agencies are also similar minded, there are a number who are not as developmentally rooted or as neurodiverse affirming in the services they are offering, and parents who are doing what they can to get the best service for their child shouldn’t have to worry about having to make sure their child’s current and future emotional health is being considered and valued.
We are a non-profit social services agency that serves not only newcomers and refugee families but also people from all walks of life. We support the families with children and youth with support needs who come to us for help to connect with the ministry and its services. We offer parenting classes, child and youth camps and child care support for families.
Agency coordinated services have been providing services to children and families for decades. They play very important role in providing training, education, resources, and services to a very diverse population. Child Development Centers in particular have provided a great deal of experience and community connections with partners that make it easier for families to coordinate services. This issue is that programs are and have been underfunded. This limit access to programing and services, creates wait times at critical times of development.
Agency coordinated services have a crucial role in providing a holistic approach and sometimes helps in filling in service gaps in due to long waitlist especially in Northern BC like Smithers, Terrace, Houston etc.
The FCC the expansion in services has been an amazing support for the families. Although this has created an overload on therapist and case load management. I would factor in more training funds for current FCC service providers with the age expansion also looking into burn out . Given the explosion in referrals having other community services while waiting to receive services helps alleviate some of the gaps in long wait list for services an individual may benefit from.
Keeping the Autism Funding for the families up North still gives families more service options and ability to purchase required equipment for therapy. Ideally families should be given an option to keep both funding and access services through FCC. It is a families choice on how and who to use their funding on.
Families have reported confusion and trouble navigating the new approach but remain thankful that they are able to receive more services through the FCC.
Please consider Indigenous history and voices when making a solution. Understanding how differing communities require services and capacity of families to enroll in therapy and understanding the systems in place is crucial to consider.
We remain grateful for the effort and continuing plan to ensure service delivery in up North Regions . We are grateful for the new additions and more service providers for local communities which has happened as a result of the FCC and expansion in differing services.
The current model is not working. It works for parents of children with autism who are of higher SES backgrounds and can hire and coordinate an effective team. It does not work for families where parents have trouble navigating the individualized funding or children with other diagnoses. In my clinic I have had numerous families with children who have rare genetic disorders and have very distinct needs – for example, for intensive speech therapy or behavioural intervention but do not have access to these. They would if they had an autism diagnosis, however. It is a deeply flawed system. I’ve spoken with families who feel they have to say their child has autism in order to get funding and push for a diagnosis because they otherwise can’t afford therapies. We clearly need a more functionally based, equitable system. It is also disheartening to see lobbies for children with certain developmental disabilities pitted against others to get funding when there is so much overlap between the presentations and needs of children of developmental disabilities that are not captured by diagnoses!
I am a service provider who has worked in a CDC for many years, and I am also a parent of a child with ASD with mild support needs, so I do have experience with the IF system. There are clearly many recent voices on this platform who did not feel that the local publicly funded agency services were able to meet their child’s needs, and that is a fair assessment. I am acutely aware of the limits in funding to CDC’s that have made it impossible to properly meet the needs of the huge numbers of children needing supports throughout my career. I have worked hard for 25 years to make our services as efficient and effective as possible with the funds available. And certainly there are also chronic problems in all sectors with staff recruitment.; however, I would argue that the staffing issue is the same regardless of public vs private services. I also know that the vast majority of our CDC clients report to us consistently that they are extremely satisfied with the services they have received and find them very helpful.
Having said all of that, I do see the advantages of the flexibility that IF allows for families, and for parents who have the advocacy skills, resources, and personal supports available to navigate that system, they can sometimes receive excellent services. If one is lucky enough to live in a community with a wide variety of private services available, they likely would find the IF route very appealing. I also know many families who have received very mediocre services through IF. There are some very significant problems with the IF system as it currently stands: 1. It is only for children with ASD, and so children with ASD are eligible for both CDC and “enhanced” services. This is inherently inequitable . 2. All children with ASD receive exactly the same amount of funding, regardless of the needs of the child. Again this does not promote an equitable level of service. 3. The services available in each community through IF is vastly different and constantly changing, putting all of the burden on the family to figure out where to go. There are many families in my region, especially in more remote communities, who really have no options to use their IF.
In a CDC, the agency is able to share and balance resources to make decisions about the division of services that are based on the needs of the individual child and also the needs of the larger community. They are able to engage in quality assurance in a meaningful way to ensure services are evidenced-based and equitable. They are able to support those families who have barriers to accessing private services. Since they are non-profit agencies, they have no other motive than to provide the best services possible given the funds they have available. They are able to look at the “big picture” when it comes to providing services for the children in their region.
I realize that many families feel that IF is necessary so that they have choice when it comes to services for their child, and I do see the advantages for specific children. However, it is not an equitable way to provide services so that everyone can get what they need. I feel that the disadvantages of IF to the system as a whole outweigh the advantages. If the funding currently given to IF was pumped into a strong public system, we could greatly increase the quality and quantity of services available to all.
Our local CDC meant well but they really did not have enough resources to help us. My son (who was completely non-verbal at the time) waited over 1 year for speech therapy, but when we finally got the phone call from them, we were told they were only able to provide 1 hour consultation every 3 months, no direct therapy at all. It was only through individual Autism Funding that we could get the services we need.
The CDC did provide funding so my son could have a support person at preschool twice a week, which I’m grateful for, but he only got it in the last year before he aged out of the program, and it was a nerve-wrecking wait. It’s just really hard for families to plan their life when they are sitting on some unknown spot on a waitlist, and basically have no control over what happens until somebody gives you a phone call.
My daughter is autistic and we relay on the Autism funding for services each year. While we do appreciate the support and being allowed to choose the best service providers for her therapy, the amount of money we receive from CYSN does not go far enough. We are often frustrated too by the fact that the people who work with Autistic children are often trained in ABA, which we feel is an outdated and harmful practice. My daughter has pathological demand avoidance and we dream of a future where the professionals working with such vulnerable children will be better trained in a trauma-informed practice. The work of Stephen Porges, Mona Delahook, and others is far more helpful than ABA training.
We never got to see an SLP or OT through our CDC as it took ages and we got AFU faster. It still annoys me that my child was obviously a gestalt language learner (I learned this myself from a book as the IDP person didn’t catch this) and struggled with food, but we were never deemed high needs enough to get services. I’m continually surprised at how I seem to know more about resources available (like the AIDE library) than most service providers I’ve talked to.
I think the BCACDI report greatly inflates how much control families have over CDC programming. Agencies (whether they are Hubs or CDC’s) work best when parents have control over the funding and purchase direct services from those agencies or, if the agency is not responsive to a child’s needs, from individuals. When agencies contract directly with the government, parents have no power (and, in reality no input other than maybe filling out a survey) to the services the agencies provide. Agencies do not respond as quickly (or sometimes at all) to parents who have no power to withdraw funding from the agency. When parents have individualized funding to spend, the agencies that thrive are those that actually provide services that parents want. Often those are small businesses, not large admin- heavy agencies. Those small businesses do not spend as much on administration as agencies that contract with the government because parents want to use their precious funding dollars on direct services for their children.
In Vancouver, I went to our local CDC for classes with my son who had Down syndrome when he was 3. It was obvious he didn’t fit in. There were no other classes available, nothing else was offered, and we never again used a CDC. My son’s needs were too profound for the CDC classes. He was later diagnosed with autism. The CDC didn’t offer anything that worked for him therefore his higher needs meant he got LESS services. This happens with larger agencies which do not feel the need to adapt their systems to the actual lived realities of all the children they are supposed to serve. With his autism diagnosis and individualized funding we were able to hire a small business run by 3 therapists for the one year he had $20,000 in funding. They dealt with all the admin and he had meetings with OT’s, ST’s, and a PT and behaviour interventionists. He responded to this better than we had expected. So when his funding dropped at age 6, we knew what he needed and used the funding to hire individuals to work with him at home and we did all the meeting planning and admin ourselves. We also received At Home Funding which helped pay for the therapists through the year. Individualized funding meant we got to choose who worked with our son and when and where and how. Using a small business in the first year, we learned what worked and then did the work ourselves.
Most parents are fully capable of planning their child’s CYSN programs/therapies at no cost to the government and most parents want to do this. I think more parents should be given the choice of getting Individualized funding! Because I had a child with Down syndrome and Autism, I think I am well suited to comment that the Down Syndrome community gets less useful services because parents have so little control over what programs or agencies are funded. I support Tamara Taggart and DownSyndrom BC in their demands that parents of children with Down Syndrome be given funding that they can control. This could be a pilot project to test how MCFD can expand individualized funding and what effects that expansion would have.
Lastly, I also strongly disagree with the report’s #4 Key Component which seems to be a request for more money for administration because CDC’s are bigger. MCFD should fund parents, not administrators.
The suggestion that agencies like CDC’s are wasting money on large admin departments is inaccurate. Our CDC admin has 3 positions for over 90 staff, for services that cover 3 school districts, supported childcare services for over 50 daycares and preschools, and large OT, PT, and SLP early intervention caseloads. That is not a bloated admin department for a CDC that served over 800 clients last year. If you want wrap around services that can work for all families, you need administrative support for payroll, accounting, staff training, scheduling, recruitment, facilities management, equipment, technology, and more. MCFD allocates 7-12% of funding to administrative costs, and our centre’s costs are below this so we can maximize spending on services for families.
As for leaving total funding and control to families, does this mean it is preferable to move to a private healthcare “shopping cart” sort of system for children’s health? CDC’s don’t just help kids with autism. We see children with varied genetic conditions, neurological conditions, various language and cognitive disabilities, feeding issues, and complicated medical diagnoses that require consultation and careful coordination with multiple health care providers and institutions. IF does not take into account a system that needs more support than a, “drop your kid off for therapy” model.
What if your child needs the IF therapist to do non-direct work to talk to a BC Children’s hospital clinic? Will you pay for phone calls, inter-agency meetings, or emails? If your therapist needs to research different mobility devices, positioning systems, or bathing equipment, and correspond with medical equipment dealers, or school personnel, will you be fine to pay them for this? How about a funding letter? If this answer is no, understand that no private therapist will ever take on wrap around service provision. And wrap around service provision is what evidence supports.
What if a therapist disagrees with what you want, because there is no evidence for the intervention you desire? Just fire them and find another? Therapists are also bound by codes of ethics and scope of practice rules, so they can’t just do what parents tell them.
While some well-to-do families can manage autism funding, many more can’t. Autism is only one diagnosis and the AFU is the only funding source. If you need a wheelchair, a walker, orthotics, hand splints, assistive technology, or an accessible bathroom, the funding is complicated and confusing, and beats you down. It is abundantly clear that most families can’t navigate these systems, and IF would only make things worse for children with multiple impairments. Our centre accepts all families, and many have language barriers, struggle with social issues, trauma, and mental health issues. These families lose out in an IF system. Our centre tries to help every family with what we can offer, and for decades we’ve been under funded, and overwhelmed by ever increasing demand. That is why we can’t do everything for everyone.
Readers only need to look at some of the Representative for Children and Youth’s reports to see ample evidence that throwing money at families will not solve all the problems. Just look at the failures of Australia’s National Disability Insurance Scheme, which is over 10 years old, still struggling to make ends meet more than ever, and is leaving families in a bureaucratic nightmare.
My experience with agency-coordinated services for my autistic child was with my local child development center (CDC). I engaged with my CDC after my child had an autism diagnosis, and was quite informed about the hat constituted evidence-based interventions to support my child. (I am an MD and so had some foundational knowledge).
My CDC did facilitated funding for a support for my child to attend preschool in a mainstream school, so that funding was helpful. As a stipulation of that funding, we had a CDC consultant come to my child’s preschool to do observations and to provide our preschool with recommendations to help my child and the preschool staff.
I wasn’t initially aware of the CDC consultant role, and so I also had my AFU RASP list BCBA also come to our preschool to do observations, provide support to staff, and to provide recommendations. Both the CDC consultant and our BCBA generated some written reports that I could review over the 2 years of this process.
In comparing the observation reports, as well as conversations with both the CDC consultant, our BCBA, and the preschool teachers, it was abundantly clear that the CDC consultant offered very little value. Th CDC’s lack of training and expertise in was evident in the generic /cookie cutter advise that was given regarding my child. This included things that would serve almost all children, like encouraging use of visual schedules, etc. My child had, at times, significant behavioural challenges like melt downs, elopement, unable to sit still, etc. It was only our masters level educated BCBAs, who were very familiar with our child, that could provide truly nuanced and useful effective interventions to help manage our child’s difficult behaviours. (Eg. Movement breaks, time boards, systematic desensitization).
It is not just my bias that leads me to the conclusion that parent-selected board certified professionals are were more effective for supporting my child’s needs. When the preschool struggled with my child in the classroom, they reached out to our BCBA, not the CDC.
I do not feel that agency-run support services can adequately support complex individuals who require nuanced and evidence based interventions.
I used to work in an intensive behavioral intervention program when the province first started IF in 2002. At that time it covered 30-40 hours of direct behavioral intervention service a week, plus OT and SLP consultation. It was a luxurious program that was severely cut back when IF was expanded province wide and to all kids with ASD. So what is occurring now for ASD AFU doesn’t meet what the best evidence supports.
Readers may not know that most CDC’s aren’t funded to hire BCBA positions, unless they have an in house ASD program. Instead, supported child development consultants will help develop inclusive strategies for childcare settings (yes, basic visuals and simple token economies could be answers). Or sometimes an OT might help with this. But neither of these professions are behavior analysts, so you can’t really fairly compare the two and expect to get the same results. Supported child development consultants typically have a diploma in early childhood education or maybe a childcare degree, vs a MSc for a BCBA. But the latter also gets paid a lot more than an ECE, and CDC’s can’t afford them, and MCFD won’t fund them (except via IF obviously).
In addition, recommendations and programs from a BCBA are typically implemented by a trained BI. Unless a child is in a very high priced low adult to child ratio preschool, child care or preschool staff do not have the education, time, nor capacity to carry out plans set out by a behaviorist. Most preschools and daycares struggle to even find enough workers.
Community agencies, z
Should play a role in helping parents to navigate and access supports for their children. This could be done as a family support navigator who could help parents to find and access services. However having community Agencies act as service providers with an emphasis on behavioral intervention is not a client centered approach. The neurodivergent community is not in favor of behaviour intervention as it takes away client autonomy.
If a community agency was to be truly client centered they would do better to help families find service providers who offered the type of service they want and need, and not offer 1 specific treatment approach for all families.
Regarding the CDCs, my son went to one and I was glad that IF was an option for ASD as the services there could not meet his needs as they were too difficult. He did see a Physio therapist who was helpful with giving us exercises he could do at home to work on some motor skills. He also saw an OT regarding toitlet training but really the information rpovide was stuff we already new and could easily be looked up online. I was especially thrilled that an SLP saw him until I realsized that she didn’t know much beyond a general assessment. It was actually a waste of our time (and of BC tax dollars). My experience was that the practicioners were all generalists and had a “one size fits all” approach to disabilites. We are well beyond that type of thinking, or at least I thought we were. Thank goodnees we had the option of IF for autism as we could provide far better interventions using that. I also have spoken to many other parents who have gone to CDCs and wre not pleased with the outcomes. Limited hours of therapy availalble, too much $ going towards overhead/admimistration etc., long waitlists and unable to provide culturally appropriate services. CDCs might work for some families, but all disabillty groups should be able to CHOOSE the approach that will best suit their situation. IF or government-run services will respect parent-choice and better meet the needs of more families. Neither system is perfect, but let the families decide what is best for them!
My child has been followed by the FVCDC since birth. She has been diagnosed with a rare genetic disorder but one known thing is, physio is so so important! But unfortunately the CDC does not have the funds or hours to support our needs. I now have been paying $145 a week to go to a private clinic for physio and the CDC will only support us for equipment. Only seeing us maybe every 6 weeks. Why is this costing us so much money? Why can’t my daughter’s physio be covered like others are when diagnosed with Autsim. It is such a broken and failed system. Please change the way they do things!
Live in area where fcc is pilot program. Fcc is a program that is not going to work. Your child is waitlisted and when finally gets through wait list for a 10 weeks block which then are put back on waitlist. Kids with higher needs need to have the consistency. Some of the programs are completely parent based with little regards to child’s needs. For a place that wants to take your funding they should let child stay on the programs instead of waiting again. I have 2 asd childern. One with high needs and was receiving little needs. We also have starbright where I live. Now they are organization worth keeping. Your support worker is actually there for you where with fcc I haven’t heard from her since firsr enrollments into all the waitlists. Also need to consider childern who loose certain amount of funding after age 6. Because they are in supposedly in public system and fcc is suppose to basically supplementing all therapies but what is the point if they are consistency being put back on waitlist and changing therapists, how can you build a trustworthy team?
Agency (CDC) – coordinated services absolutely have a role and I support the expansion of services in these settings as well as a vital increase to funding and staffing so that they can meet the needs of their communities. I also think that individualized funding must be offered as a choice for ALL families, not just those where an ASD diagnosis has been made. Give all families a choice of (well-funded, expanded) agency services or individualized funding that allows them to hire their own service-providers if that is a better fit for them.
Why do children with an ASD diagnosis continue to be the ONLY group that receives the “individualized funding model,” when all families of children with disabilities have been saying this is what they also need. I need our government to give me a clear answer on this.
When funding is “secured” for professionals and families, a care economy develops, and services and supports increase as a result. Children with other diagnoses like Down syndrome also require this model of care.
Agency coordinated services only support parents and kids when there are individual options for children. When the agency monopolizes and “takes over” all of the service provision and coordination, like the Kelowna Hub, it actually took away other services and agencies’ program funding that served our kids for years in the community. Relationships that were well established were destroyed and our kids were forced into the new options that either the FCC offered or the new contracts with the Y or Boys and Girls Club which I don’t find helpful. All predetermined supports for us, “here is what you get” services model, not “what do you need?”. Funding cut from access resources and youth to adult transition programs in favor of ARC and FCC programs, which seemed overstated and programs underserved. No youth group programming throughout the year, and the services offered at the FCC did not meet my needs. Very disappointing model that masks itself in being “coordinated and flexible” but it really was rigid, inflexible, offerings of services already running, rather than an individual approach. I have made zero relationships with staff at FCC after having a CYSN SW/ case manager for years, who supported our family.
Families still need a flexible, individualized approach, the SAME way people with autism do. Stop discrimination and fund all children with disabilities the same way!!
I do not want an agency coordinating or providing services for my children’s needs. When we have accessed them in the past the services are not beneficial nor consistent nor top quality.
I want funding to continue through AHP so I can hire my own therapists (PT, SLP and OT) that can support my children in ways that are most beneficial for my them.
%100 agree with this.
My child needs in-home services.
I chose who enters my home and works with my child. Period.
Parents need assurances that we will not be bullied back by systems and rule books that limit our choices for type of service and who provides it.
The CDC has no plan for BC’s Complex Kids—and this is the community of children that is unilaterally excluded and under supported for access to needs based services Province wide. Education, Childcare, Healthcare, and now “elective” support services will be riddled with barriers for complex kids. Families raising these children-some of whom will become life-long depended adults with disabilities—these families need control and flexibility. Please, no more barriers to access!
I always find it interesting that agencies like BCACDI claim, repeatedly and without irony, that they are underfunded, when they have the staff to put together not only shiny brochures such as this one, but also have staff present at every single government consultation and even lobbying Minister’s offices directly. If parents had the capacity for even half of the stakeholder consultations that BCACDI consistently does, how different these conversations would be!
As someone who has had personal experience with our local Centre for Child Development with my son, then aged 5, I will say this report really seems to inflate the level of control that parents have in regards to these agencies. I was admonished for bringing him “late” to services (when we were chased out of the local StrongStart classroom, no one had told me of the Centre’s existence! That’s a separate issue). I was already unemployed, due to the exclusion of my older child from public school and lack of accessible daycare/SCD for my younger one. The CDC dictated to me the number of appointments and session times with SLP/OT, right up until my son was officially diagnosed with autism. Then they immediately wanted to terminate services, well before I had an assessment report in hand, let alone made it to MCFD to do all the other paperwork to access autism funding. So to see the writing here talking about family centered care, wrap around care, continuity of services and collaborative professionals, brings out a certain bitterness in me. This was definitely NOT our personal experience.
My sons’ behaviors, not their diagnoses, was what caused the exclusions and to see the total lack of behavior support specialists in these Centres was disheartening. I’m told nowadays that they service around 700 families with behavior support services – out of something like 80,000 children with a recognized disability diagnosis (per Ministry of Education headcount) in the province.
Ultimately, I find this whole report to be pretty redundant to other Ministries and their offerings.
Goal 1: “Provide a sufficient and equitable level of funding for the existing infrastructure of community-based not-for- profit (CBNP) organizations to meet the needs of their communities.” These Centres are heavily government funded – slapping a nonprofit label on it removes government accountability and adds a layer of unnecessary bureaucracy. This seems like putting the cart before the horse.
Goal 2: “Consistent suite of services available in each community in BC, and accessibility of services across the pediatric lifespan (0-22).” Agreed this is important, but not convinced BCACDI is the best method of providing services. This could be moved under the Ministry of Health, or Ministry of Education and Child Care, or both, to provide integration through schools as well.
Goal 3: “A service that is accountable to the families served, the funding source, and the
citizens of BC” Agreed this is important. Taxpayers do receive annual budgets, and even fiscal plans, directly through the government already. Downloading this to BCACDI adds a layer of bureaucracy and obscures this information.
Goal 4: “Procuring services in a manner that acknowledges and values the experience and expertise of existing service providers, and doesn’t significantly disrupt services to
children, youth and families” This one feels ironic, given my personal experience. Ultimately, people who feel bonded to a community will stay there, regardless of who their specific employer is.
Goal 5: “Individualized funding that complements publicly funded not-for-profit services”. I take big issue with this section, so let’s break that down.
First, the government of that time chose to provide IF only to autism families because they were sued in the Supreme Court. The inequity with the rest of the disability community could be rectified by expanding IF to other families with a stroke of the pen, and that would be more fiscally responsible than bloating bureaucracy with Hubs/FCC.
The section about rural/remote is also incorrect. When IF was initially granted, there were only 4 behavior consultants in the province. Because the funding was available, and these professionals could spread out across the province and build their caseloads, we now have over 400. Other professional categories have done this, albeit to a slower degree – and there are ways of incentivizing folks into professions (such as subsidizing university for certain degrees, or increased wages for workers to live in northern communities).
The part that actually galls me, though, is BCACDI’s bold claim that IF lacks an accountability framework. There are entire dedicated offices for AFU/AHP that monitor and approve every service provider, invoice, equipment request, etc. The very few parents who have done direct funding have to return a budget certified by an accountant that each item is correct. There’s the government Registry of Autism Service Providers (RASP) list, and Provincial colleges to regulate SLP/OT/PT/Psych/RCC. There could stand to be more regulation of front line workers, such as behavior interventionists and special education assistants – that’s a separate issue from Individualized Funding.
Goal 6: “Development of a robust human resources strategy for the CBNP sector” You want recruitment money – doesn’t everyone?
Ultimately, I do not believe that MCFD is an appropriate vessel for providing these services and interventions because they approach everything with a child-protection lens, and disability does not automatically mean families are in need of protection. Many of these service providers currently employed at BCACDI could be shifted to Ministries of Health, Education, Childcare, etc and still remain in their local communities meeting families they already have connections with.
Currently, the majority of agency-coordinated services only provide support for 0-5 years of age, or focus on only one discipline (Behaviour consultation as funded by MCFD for AFU clients). These leaves out a significant amount of families in need of service, with many youth aging out of services altogether.
All of these agencies have waitlists, which is why offering more than one type of service is important. In order to meet diverse needs, there needs to be more than one option for families to select in terms of service provision, as one model may not fit or meet the needs of the many diverse families out there. When we remove informed choice and only provide one service, the result is providing a disservice to many.
The needs of children, youth and families are only being met by a small percentile of the province’s families who even have the capacity to seek out service. Agency coordinated services need to be flexible and multidisciplinary, offering more than one service model, and work in collaboration with private practices and other community services who may have more capacity to serve families due to less administrative and government-regimented constraints. If we continue to shift to large agencies where administrative staff filter information down to service providers, the majority of funding will end up serving the agency rather than the families.
This post is misleading in several ways. The assertion that these agencies provide only one discipline is incorrect. The majority of agency coordinated services are provided by CDC’s, which provide multiple core disciplines of OT, PT, SLP, supported child development, and infant development. Those that aren’t housed in CDC’s are integrated into health authority structures (i.e., health units) or other non-profit societies.
The post falsely suggests that agency-coordinated services or CDC’s funnel government funding away from families and instead to the benefit of administration and the agency. This is insulting and wrong. Agency coordinated services are non-profit and governed by volunteer boards of directors. These boards are made up of members from the community who help make decisions that are directly linked to local community needs. Every year there is a full financial audit done by independent firms, who report the findings to the boards. In turn, such financial auditing results are reported out to MCFD funders. No penny is wasted and everything is accounted for.
Instead, it is more truthful to acknowledge that private practices will channel public monies to the benefit of their owners. Private practices are businesses that are designed to make profit. Some private practice direct OT or PT therapy may be appropriate in select circumstances, and the School-aged Extended Therapies funds that. It should be available to more students than just those few who qualify for the At Home Program.
Additionally, non-profit agency services are CARF accredited, which involves an intensive multi-day review that ensures services are family-centred, measurable, and accountable. In comparison, I am unaware of any private practice that meets standards set by external accrediting bodies.
The post says that the majority of agencies only cover the 0-5 year age group. If you look at each BCACDI agency website you will see that most of the population of BC is served by agencies that have school aged services. A sample of BCACDI member websites from both small and large communities show general province wide provision of OT and PT school therapy services: Prince George CDC, Port Alberni/Clayoquot, Nanaimo CDC, Victoria (Queen Alexandra – VIHA), Vancouver/Burnaby (Vanc Coastal Health), North and West Vancouver (OT only via Centre for Ability), North Vancouver PT via Vancouver Coastal Health, Ridge Meadows/Maple Ridge CDC, Fraser Valley CDC (Abbotsford), Centre for Child Development CDC (Surrey), Kamloops Children’s Therapy Centre (includes Lillooet, Lytton, Clearwater, Merritt), Bulkley Valley CDC (Smithers), Terrace CDC, Fort Nelson CDC, William’s Lake CDC.
Hopefully this comes out sounding somewhat respectful:
Why do CDC’s need a Director, 2 Senior Managers, 3-4 service Mangers, and Dozens of consultants to re-contract MCFD’s cash to regional support services such as Childcare Providers, and sub-contracted for-profit behaviour services?
Directors inside MCFD say they are pumping cash into CDC’s and, yet, nothing seems to change regarding access to supported childcare, nursing support services, or inclusion support for school aged care 12-18 years of age.
Could it be that all the “work” being done consists of zoom meetings and less face-to-face work with children than ever before? I’ve sat in meetings representing the childcare operator and listened to 8 people talk theoretical approaches for an hour with no plan to ever follow up with coaching for the direct care providers. Imagine meeting about a child for an hour and the only information given to the direct care provider about implementing strategies is a piece of paper. Or worse, the only person who comes to check up on direct care providers is an SCDP/Key Worker type who isn’t qualified beyond a 20 hour course and a garbage bag of jargon otherwise known as Positive Behaviour Support.
In my opinion, The bar for QUALITY SERVICES is at an all time low while the cost to the ministry is at an all time high. I would have fired or never hired the majority of SP’s and key workers I encounter. I shudder to think what my child’s skills would be today if we had had the misfortune of working with the ‘experts’ provided by the local CDC.
There are many agency coordinated services that meet the diverse and individualized needs of children, youth and families. Some of these agencies have been doing this for years, 50 years, for a couple of them. I think what MCFD is missing here is that by not continuing to fund and support the services ALREADY in place that have proven to deliver the services well, is a mistake. Creating NEW agencies, FCC’s, doesn’t mean MORE service for children, youth and families. Having an FCC doesn’t increase the number of professionals needed to provide the service, it just reorganizes it, which doesn’t necessarily make it better.
If MCFD WORKED WITH the current agencies to determine where the changes/increases need to be to provide MORE service, not necessarily better service, is a better solution than dismantling programs like Infant Development, that has been supporting families for decades.
Totally agree. Funding cut from one agency that has established relationships in the community – access resources, and FCC just took their program model and our kids had to try to adjust to a new place, new staff. Zero consideration of our children’s needs and relationships.
I am an OT who works with children 0-19 in a community-based not for profit (CDC) agency in a mid-sized city. I have been an OT for over 25 years. Agency coordinated services play a critical role in meeting the diverse and individualized needs of children, youth and their families.
I agree with everything in BCACDI’s white paper and the “way forward” plan. It summarizes an extremely complicated system into a short document. It highlights the strengths and explains the inequities and flaws with the system we have to work in.
There are some extra details not covered in the document that support the use of a CDC community-based not for profit delivery system. Some of these details further illustrate why CDC’s have been unable to deliver service as fully as possible, at no fault of the organizations. Understanding these details will help readers appreciate how the solutions in the Way Forward plan will address these deficiencies.
1) School aged therapy services are severely underfunded and paid for by an inconsistent and untidy mixture of inadequate siloed funding systems. It is stark how dramatically OT and PT funding drops once children reach school age. There is a chasm between early intervention and when school aged program funding starts in kindergarten. While it’s true that the window of child’s development has the greatest potential for change when they are under 6 years, the functional problems don’t stop once they enter school. The government seems to think the education system will make up for this drop-in service, and it will somehow ensure children still get the services they need. But this doesn’t happen.
BCACDI’s Way Forward plan calls to extend early intervention program services several years beyond school entry. This will ease challenges created during that critical transition period. This makes sense.
OT and PT services for school aged children are administered differently across the province, from a blend of MCFD and Ministry of Education and Childcare sources. Each school district and MCFD contract is different. As a result, there are incredible variations in the amount of service between communities. So what a child can get will depend on where they live, and not on what they need.
Because of the drop in funding as children enter school, OT and PT services can often only see the most severely disabled school aged kids. The rest, in general, go without, or with very limited consultation. It isn’t that these kids aren’t important, it’s because services must be rationed due to funding limitations. Increasing the funding for the school aged therapy program, and fairly allocating the funding so it is delivered globally by CDC’s will allow for more equitable service.
In addition to serving the public school system, our CDC manages our funding so we can serve band schools and first nation communities. We work collaboratively with independent first nations social and health systems. The same is true for home schools or independent schools. But other CDC’s can’t do this, which is unfair and further entrenches inequity. The system needs to be managed so global funding matches each community’s unique needs and is administered fairly and equally.
2) MCFD doesn’t follow through with contract negotiations, and that worsens the financial stability of CDC’s. Historically, many CDC’s used to be funded by the Ministry of Health. For this reason, those CDC’s have the same collective agreement as those who work in hospitals. This changed in the early 2000’s, when CDC’s were moved to MCFD funding. As a result, although the collective agreement and wages are the same between hospitals and most CDC’s, over the years MCFD has often not honored collective agreement wage increases. When this occurs, CDC’s either have to dig into their own savings, or not provide the raise. Those CDC’s with deeper pockets can cover the raises, and those with less can’t. As a result, CDC’s from smaller communities or those with less savings struggle to meet staffing demands, and in the end can’t provide equal service.
If the CDC does cover the raise, they can only do so by cutting the services elsewhere. For example, to make ends meet, over the years our centre has had to cut travel expenses. This means we can’t go to a family’s home, and they have to come to us. That works for some families, but it acts as a barrier for many others. Some childhood disability concerns can only be figured out in the home environment, and a centre visit is inadequate.
To make it even more complicated, some CDC’s do not have the same collective agreement as others, so they can’t pay the same wages. Staff understandably don’t want to work in lower paying CDC’s, or if the wages are lower than in hospitals. Similarly, why work in a CDC when a therapist could make substantially more money in private practice?
3) Staff rural recruitment and retention incentives need to apply to CDC’s – The provincial government has recently announced new initiatives designed to increase recruitment of health science professionals in rural communities and among professions facing acute shortages in urban centres. These initiatives will provide signing bonuses to help recruit new health science professionals where they are most critically needed to address long-standing shortages. Like the historical MCFD funding shortfalls, it is not clear if these incentives will only apply to the Min of Health funded hospital and health sector, and not to MCFD funded CDC’s.
Our staff cover rural communities, school districts, and first nations that could be a 2.5 hour drive away. You can’t see a lot of kids if you spend 5 hours of a work day driving. It would make more sense if staff could spend several days in the rural community and stay overnight. Yet the MCFD contracts do not provide targeted funds that would allow for an outreach model. Health authority funded Sunnyhill outreach programs like seating and mobility, and assistive technology receive extra funding so they can get to remote communities and stay several days. Yet CDC’s don’t get this.
The funding models should consider the huge geographic area some CDC’s must cover, and provide adequate funding so outreach trips can occur. The alternative is to ask families to drive to our centre, which adds a lot of hardship and inconvenience on already overburdened and stressed-out families. This is another reason why funding needs to be tailored to individual communities and led by those who already know their region.
I agree. I don’t think it’s fair that in order for my children to receive the services they need that I need to take them not only from their home but their community. To ask a parent to chose between services and raising their children in their traditional territory, around their extended family and their language is not ok. Either way the child goes without.
Typically they come with years of knowledge, experience and know how on being able to co ordinate what is specifically needed for each individual family. Being multidisciplinary they can provide these individualized services without many different appointments in different locations which can be a struggle for families. The staff in these agencies are already familiar and have connections with other agencies and the schools for when other services are needed by the family. Together this makes a cohesive approach for families with less stress
Due to MCFD requirements you know what the service they are providing are like, being accredited and use of funding.
Increase parent capacity by promoting interdisciplinary communication and collaboration on service delivery. Focus on whole family strengths and capacity building by identifying specific family quality of life outcome goals.
Providing families with streamlined service and fewer transitions between professionals. Increasing numbers of professionals base upon referrals in each discipline to decrease caseloads and improve quality of service provision.
I think that agency coordinated services won’t meet the needs of children and youth. From my experience and from what I take away from this paper is a colonial service model that is not going to work with indigenous and immigrant youth. It limits support options for our very diverse children. I also think that by it being left to agencies we will continue to leave those in remote and rural communities without support.
Currently services are mainly provided by agencies like CDC. When I moved to my community I was told that the CDCs did not work with children and youth living on reserve and the services that were available were available the next town over and their office was in the basement of a church. Given the history between indigenous people and the church how is this trauma informed or culturally aware? It was just one more barrier to getting services for some families.
Services need to be individualized to meet families needs.
The CDCs are already providing most services to families. And as we all know, this system is broken.
Some communities don’t have any help for families with complex needs. They are left to fend for themselves and find their own support services, leaving many in the dust if they don’t have the capacity and no services if entities don’t have the staff with the qualifications to help.
The role that agencies have is very well documented in the full BCACDI report attached. It clearly addresses the components that are need for Family Centered and wrap around that is provided by CDC’s. The key component is the provision of adequate funding that would allow for CDC’s to broaden their valued, appreciated and crucial services for children and youth and their families from birth to school entry.
Agency coordinated services must tailor their services to meet the unique needs of Indigenous families with support needs. Agencies have the ability to be allies and work collaboratively with Indigenous Nations to ensure that Indigenous families who have children and youth with support needs are services in a way that is culturally safe and reflectent of their traditional ways of care/support. However, Indigenous Nations must be included in the process of developing their supports and the policies that lays the foundation of the agencies practice.
And this engagement needs to be at the local level. Hiring a firm in West Vancouver who provide feedback using an “indigenous lens” is not adequate engagement. What is acceptable for one community might look completely different for another. Especially in the north.
Not working at all for some families. Some children/youth are being removed from family’s care traumatizing children, family, and extended family; setting the youth back decades, putting the children at risk of harm if fleeing abuse, potential risk of self harm, and refual of future services.
The agency on our area meets all the desires you are describing as what are needed services. This agency is a foundation for many family to receive services and support for children and families who are hurdled with processes , systems, and paperwork while trying to make care for their children their priority
Agency coordinated services play a significant role for families who require that style of service. In my experience, when families are deciding between agency and individualized funded services, they often choose agency services when they are seeking respite. They can drop their child/children off at the agency to receive whatever service they are accessing (behaviour intervention, OT, SLP, etc.) and can take an hour or two to themselves (either to get a coffee, run some errands, see a friend, etc.). Additionally, they may seek agency services over IF services if they cannot find service providers in their area, or cannot find the right-fit service providers. Alternatively, they may seek agency services because there is sometimes a social aspect that isn’t as easily provided through certain IF services. When families choose IF services over agency services, it’s often because they need/want to find service providers who align with their cultural and family values, and this cannot always be accomplished in services provided by an agency, in which there is oftentimes an intake professional who then decides which services are accessed or which service providers are accessed. IF services can also often be provided within the home of the client/family, which better allows for caregiver coaching and generalization of skills across a variety of environments. IF service providers are often more flexible than agency provided services, where families can get access to a service provider on evenings and weekends, and for specialized supports such as sleeping and eating supports. Additionally, IF service providers are not restricted by some of the elements that are inevitable when working with an agency, who often employ unionized workers. Though unions provide a lot of value to their employees, it’s sometimes at a cost or disservice to the youth being served (e.g., when strike action occurs, when employees shuffle around due to seniority, etc.). These minor setbacks are often not experienced by families who contract with service providers through IF. There is value to having both as an option – there is such a diverse set of needs for families and youth, and it calls for a diverse set of available services and choices for those families. The families who may not have capacity to utilize IF, can access exactly what they need from an agency; and the families who have capacity to tailor their service provider team to their child/ren and family, can do so through IF.