ACT News and Resources

Representative of Children and Youth releases statement on new MCFD Framework

“While a long-term plan is admirable, action is needed now. We believe a fully resourced, short-term strategy by MCFD is required to solve lengthy wait lists for assessments, respite and services until the new system is fully functional.

The Representative of Children and Youth, Dr. Jennifer Charlesworth, has released a statement addressing the new Ministry of Children and Family Development (MCFD) framework for its Children and Youth with Support Needs (CYSN) program. See the full statement from the Rep below.

Office of the Representative for Children and Youth


Nov. 24, 2021
For Immediate Release

Since the Ministry of Children and Family Development (MCFD) announced long-term plans to fundamentally
change its Children and Youth with Support Needs (CYSN) program, many parents, volunteers and others
who work with children and families have expressed serious concerns about those changes. Sadly, the
announcement has resulted in uncertainty, fear, anxiety and stress for many families, particularly for those
whose children have autism.

At the same time, the announcement was greeted with cautious enthusiasm by other families who saw a
glimmer of hope that they might finally be able to access much-needed supports and care for their children.
Now they, too, are fearful that their children’s needs might not be met if the new CYSN framework is
abandoned, and some have been criticized and shamed on social media as they expressed hope that their
children would finally get supports.

It is time to take a step back to address the uncertainty and fears and ensure clear information is available to
families and advocates, while not losing sight of the need to build a much better system of care for CYSN.
As B.C.’s Representative for Children and Youth, I have long been calling for a fundamental shift in the CYSN
system. Like many others, I have questions and concerns about the framework as announced on Oct. 27.
However, I also see within MCFD’s plan the potential for much-needed and long overdue improvements. In
this regard, I am in favour of the long-term direction as laid out by Minister Mitzi Dean.

In particular, I support the shift towards a needs-based rather than a diagnostically driven CYSN system. This
shift will enable children to receive timely supports based on assessed developmental needs even before
they receive a diagnosis – which currently can take many years. I also support the intention to enhance
community-based access to a diverse array of care and supports, from infancy through to young adulthood.
The minister described the current CYSN system as “patchwork” and said that it leaves too many children on
the outside without services. I couldn’t agree more and, therefore, long-term improvements are absolutely
necessary.

In my three years as Representative, I have released three reports that illuminate the weaknesses in the
current CYSN system. These challenges include lengthy and growing wait lists for assessments and diagnoses,
lack of access to assessments and quality care in many communities, lack of timely developmental supports
to enable young people to thrive, lack of wrap-around support and resources for families who are
endeavouring to meet the exceptional needs of their children, discriminatory screening and referral patterns,
and inequity in services provided depending on a child’s diagnosis.

Through thousands of RCY advocacy cases and reports of critical injuries and deaths, as well as through deep
engagement with young people, families and community partners, we see the extent of the weaknesses in
the current system. While some current CYSN services might be adequate for some children, youth and
families, we know the system as it exists today does not work at all for many. It does not work for children
with fetal alcohol spectrum disorder, with undiagnosed neuro-cognitive developmental disorders, with
complex medical needs or with complex developmental and behavioural concerns. It also does not work well
for many children with autism and their families and caregivers, as we described in our 2018 report entitled
Alone and Afraid.

If we as a society are going to meet the call of Article 23 of the UN Convention on the Rights of the Child,
which speaks to the rights of all children and youth with special needs to access care and support and live a
life of dignity, belonging and connection, then the current system needs to be transformed.

Despite the concerns about the CYSN framework announcement that have been raised during the past few
weeks, I trust that we can all agree on some basic facts and principles: The current CYSN system does not
work for many children with support needs and their families and must be transformed. All children and
youth with support needs deserve access to equitable, timely, culturally attuned and community-based care,
resources and supports. Families, young people, caregivers and service providers need to be meaningfully
engaged in the design and development of a transformed system of care. And, finally, a transformed CYSN
system that works for all children will require significant government investment.

While I support the long-term direction of the CYSN framework, I also share many of the concerns expressed
by families and those in the sector and have a number of questions about the announcement that require
answers in order to ensure that children and families who need support are provided with the confidence
that they will receive it – both now and into the future.

MCFD’s plan is long-term and does nothing to help children and families who are struggling right now. As my
Office documented in our report Left Out last December, many of these children and families are in crisis and
a plan that won’t be fully rolled out for at least 3 ½ years is not enough. The Community Partners we worked
with on that report tell us that things are even worse for the families they serve now, nearly a year after the
Left Out report.
While a long-term plan is admirable, action is needed now. We believe a fully resourced, short-term strategy
by MCFD is required to solve lengthy wait lists for assessments, respite and services until the new system is
fully functional.

Aside from an urgency to address current needs, I am concerned that there has been no indication that
increased resources are on the horizon, which will be critical if the system is to serve more children and
families and do it faster and more effectively. MCFD says its plan will expand services to 8,300 additional
children across B.C. but the ministry does not have the resources to properly serve the children currently on
its caseload.

After three recent RCY reports and one by the Select Standing Committee on Children and Youth that
addressed shortfalls in the current CYSN system, I am pleased to finally be seeing a plan for change. But how
will even more families be served without more money and resources being put into a system that is already
very under-resourced? A commitment to significantly enhance investments will go a long way towards easing
the understandable concerns that there will be a watering down or elimination of services and supports,
particularly for those receiving autism funding, in order to serve more children with the same funding.

I have other questions about the MCFD plan, including how the proposed service hubs will be rolled out, and
how they will serve families who do not live in a hub community as well as hard-to-serve families? And how
will this plan support Indigenous communities to either develop their own robust array of supports or ensure
that they are well-served and have access to culturally attuned and safer supports within community hubs?
Autism advocates and parents, quite understandably, are concerned that a move away from individualized
funding will erode services that they rely upon. Meanwhile, advocates and parents of children with other
support needs argue, quite understandably, that their children deserve equity when it comes to supports and
services provided by government. Better and ongoing communication and engagement by MCFD with
parents and advocates of all children with support needs is needed to ease those concerns.

Having said that, I reiterate that changes to the current CYSN system are necessary. I urge government to
offer short-term help to struggling children and families while its long-term strategy is rolled out. I also urge
government to fully engage with parents and advocacy organizations of all children with support needs to
ensure that the long-term result is a revamped system that is well-resourced and that works for everyone.

Sincerely,
Dr. Jennifer Charlesworth
Representative for Children and Youth

Opposition to MCFD Framework Grows

Petition, Rallies in Victoria and Vancouverblank

The recent announcement by BC’s Ministry of Children and Family Development (MCFD), ending individualized funding by 2025, has galvanized families and organizations across disabilities to raise their voices together because MCFD’s new policy framework is so clearly unworkable.

Thousands of families of children with autism are distraught. Many of those whose children have other disabilities, chronically ignored in BC, are dubious that the government understands the complexities of what it is proposing. The lack of a budget and a detailed plan indicates that BC’s government is not prepared to fund the massive investment in clinicians and infrastructure that is required, after decades of neglect. 

Organizations across disabilities are meeting. There is a growing consensus that one model imposed across the province in the name of equity, ignores the diversity of families and the children and adults they support. There is agreement that BC must have a proper child serving system that invests in, rather than neglects, children with disabilities. There is agreement that the Ministries of Education and Health must also transform their negligent practices to invest in neuro-diverse and disabled children to achieve their potential.

ACT believes, based on our experience and what families and clinicians are telling us, that now is the time for families to unite across disability and demand that all of BC’s political parties commit to a non-partisan investment in BC’s most vulnerable children. We are especially concerned that  young children, whose access to diagnosis, therapy and education has been largely ignored throughout the pandemic, cannot wait while politicians debate which party is to blame.

Whether you are a family member, friend, service provider or ally, you can support children with disabilities and their families. Write a letter, sign the petition, meet with your MLA, join a rally – these are all effective ways of convincing our politicians that this is an issue that matters to British Columbians. ACT would appreciate being copied on letters emailed at info@actcommunity.ca.

Sign the petition

The petition supporting individualized funding has now reached over 17,500. Add your signature here and share!

Attend one of three rallies – or all three!

Wednesday, November 24: BC Legislature, Victoria
In support of individualized funding
Time: 11:00am – 2:00pm
[Register with Autism Support Network]

Thursday, November 25: BC Legislature, Victoria
Supporting equity for disabled children in BC schools
[Register with BCEd Access]

Friday, December 3: BC Government Offices, Vancouver
(Outfront of Canada Place)
Time: 11:00 am – 2:00 pm
[Contact BCEdAccess at info@bcedaccess.com]


How to Advocate for Investment in Children

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It is time to get organized, not time to despair! Just because a government ministry announces a change, it doesn’t mean it will happen. ACT has put together ‘advocacy tips’ for families getting started. We also call on para-professionals, clinicians, educators, researchers and professional organizations to join with families and the organizations that represent them. Families are exhausted, they need your support and encouragement.


ACT’s “New MCFD Framework for Children with Support Needs” Resource Page

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There is information coming from many different sources about the new framework for children with support needs. ACT is organizing this information on a special page of our website. Visit to see the latest information.

Visit the page

If you have a resource that ACT is missing on this page, please email info@actcommunity.ca.


ACT’s Executive Director reports on MCFD’s chronic failure to meet the complex needs of children and disabilities

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On November 9, a few hours after MCFD Minister Mitizi Dean met with over 20 representatives of community organizations, including AutismBC, Autism Support Network and Inclusion BC, CKNW carried an interview with Deborah Pugh, ACT’s Executive Director, and CKNW host, Jas Johal. They discussed the long wait lists for current services and the failure of successive BC governments to fund meaningful services for all children across disabilities. You can listen to the interview by scrolling through to 3:14 pm on CKNW’s ‘Audio Vault’ Audio on Demand (globalnews.ca) for November 9.


MCFD Information Sessions: Details to Come

MCFD has announced information sessions about family connections hubs for families, service providers and community partners. No registration details have been provided yet. A Frequently Asked Questions (FAQ) document was released as a follow up to the November 9 meeting with community partners.

ACT will add any new information to our MCFD Updates on ACT’s MCFD Framework page. Check the page for the for the latest updates.


If you are new to ACT, join our confidential email list for updates and more information as it becomes available: www.actcommunity.ca/mailing-list

Questions for ACT? Email us at info@actcommunity.ca.

What to do while waiting for your child’s assessment Copy

blankIt is important that parents start the process as soon as concerns emerge as it can be as long as two years to wait for a publicly-funded assessment through the British Columbia Autism Assessment Network (BCAAN).  If your child makes sudden developmental gains, which does happen, then you can cancel the appointment. Because of the long waiting lists, many parents decide to pay for a private diagnosis, but those waiting times are also long, from four to nine months. 

As of October 2021, funding for private assessment is available through Variety – the Children’s Charity for families with limited ability to afford the cost of private assessment.   Their current processing time for grant application is about 8 to 10 weeks because of the volume of applications received.  For information on Variety’s grant for private autism assessment, please see ACT’s Information Database.   For Indigenous children live on reserve, there is also Jordan’s Principle providing funding for private assessment.  For more information on Jordan’s Principle, please see ACT’s Information Database

 

Positive steps you can take while waiting

While an early diagnosis is important, there are many things that parents can do while they wait. This is especially true if they are struggling to understand their child’s challenging behaviors, which often stem from their communication delays. ACT has compiled information and resources on this page to help families navigate this stressful period with a focus on improving family functioning.

Unfortunately, many of the publicly funded services listed below also have waiting lists, so it is important to contact them as soon as possible. If you have concerns about your child’s development, remember that learning how to engage your child in developing their communication skills is important, regardless of their eventual diagnosis.

Ensure your referral has been received by BCAAN

It is a good idea to confirm with the Regional Coordinator for the BC Autism Assessment Network (BCAAN) to make sure that they have received a referral for your child – in case the doctor’s office has not sent it in. You can also find out about the latest wait time and if there is any additional information they need. This may not speed up the process, but will definitely avoid any unnecessary delay.

Get on the cancellation list if you are waiting for a private assessment

For a private assessment, ask if the clinic keeps a cancellation list which may allow an earlier appointment if you have flexibility.

Start a folder and keep a record

Organize and keep in a folder your child’s medical records and any previous developmental or behavioral evaluations. Electronically is preferable, as you can share them more easily. You can also keep your own notes and collect video clips observing your child’s behaviour in different places with different people. These will become very useful when the diagnostician requests specific information or when you need help answering the questionnaire.  

Keep a record when you contact service providers – it can be confusing to deal with the many different organization/services listed below. It is helpful to take notes on which organizations you have contacted, including the name of the person you spoke with, the date, and what they said. 

Access services and support within your community

Speech-Language Therapy services

Free speech-language therapy is available through local health units for children aged five and under who are language-delayed. You can ask your family doctor to make a referral or contact them directly. You may be put on a wait list and contacted when a Speech-Language Pathologist becomes available.

To find your local health authority, please see Regional Health Authorities

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Infant Development Program and Aboriginal Infant Development Program 

The Infant Development Program (IDP) is designed for children under age three who have either a developmental delay or disability, or are at risk of developing them. The Aboriginal Infant Development Program (AIDP) continues until age six and includes activities and materials that reflect local Indigenous cultures, customs, beliefs and values.

Both programs provide home-based prevention and early intervention services. Consultants assist families in acquiring the tools, skills and community connections needed to promote optimal child development and support developmental challenges.

Depending on the needs of your child, a consultant can link you to other services, including Supported Child Development, Aboriginal Supported Child Development, and Early Intervention Therapy. Referrals can come from either parents or professionals, such as public health nurses, doctors and others. As both programs are chronically under-funded, do not delay in seeking support as in many communities there are waiting lists.

To find your local Infant Development Program, you can search Healthlink BC Directory

Supported Child Development Program and Aboriginal Supported Child Development 

Supported Child Development (SCDP) and Aboriginal Supported Child Development (ASCD) are community-based programs intended to assist families of children who require extra support to attend their community childcare setting. SCDP provides support for childcare staff, families and their children, up to 12 years of age, in licensed daycare, preschool or out of school care programs. Services for youth 13–19 years are available in some communities. Self-referrals from parent and guardians or referrals from community and medical professionals are accepted. Both programs are chronically underfunded and waiting lists are long. 

To find local Supported Child Development programs, see Healthlink BC Directory.

Early Intervention Therapy Program 

Early Intervention Therapy Program (EIT) provides community-based occupational therapy, physical therapy, speech-language therapy and support services for eligible children and their families. These services support children from birth to school entry who have, or who are at risk of, developmental delay or disability. The EIT Program accepts referrals from families and professionals involved with the child and family. Often these services are provided through Child Development Centres but funded through the Ministry of Children and Family Development. Unfortunately, services are often limited by financial constraints and there are waiting lists. 

To find the EIT program in your area, ask your public health nurse or physician, or contact your local Ministry of Children and Family Development office. 

Waiting lists for EIT services often force families to hire therapists, privately, but many families cannot afford the fees involved. The Registry of Autism Service Providers (RASP) is a good source of therapists who can provide fee for service. 

Child and Youth with Mental Health (CYMH) services

Children and youth can access free and voluntary community-based mental health supports and services from Child and Youth Mental Health (CYMH), provided through the Ministry of Children and Family Development. There are about 100 intake clinics in BC providing a range of mental health assessment and treatment options at no cost for children and youth and their families. The services usually include counselling, social work, parenting supports, and psychiatric services.  However, families do experience significant waiting times unless their child is in crisis.

For more information on CYMH services in your area, please see Child & Youth Mental Health Intake Clinics

Learn more about autism and treatment options

Learning more about autism will help you develop questions to bring up during the assessment. It will also help you prepare to take action if your child is diagnosed with ASD as well as giving you practical strategies that can help you resolve challenges. Issues including toilet training and sleep affect many children with developmental delay. The resources below can help regardless of your child’s ultimate diagnosis.

A note of caution: it is important to make sure your information comes from credible sources provided by well-qualified researcher/clinicians. There are many promises of miracle treatments on the internet which can waste financial resources and vital time. ACT’s Autism Information Database (AID) has thousands of vetted resources on autism-related information. There are links to excellent international websites on a wide range of topics relevant to children, youths and adults with ASD and their families. While learning, it is helpful to:

  • Know the signs of autism, and what is NOT autism. Your child is first and foremost a child, and some conditions (i.e. Gastro-intestinal struggles or severe behaviors) should be addressed regardless of your child’s diagnosis.
  • Learn from your child. Every child is different, and every child with autism is different. Start keeping a journal of observations of your child. You can refer back to these to better understand your child’s progress and share them with teachers or therapists, whether your child receives a diagnosis or not. 
  • Begin researching intervention services. Whether your child gets diagnosed or not, the assessment may reveal a developmental delay or social communication challenge that could benefit from services such as behaviour intervention, speech therapy, or occupational therapy. The professionals conducting your child’s assessment can provide you with recommendations on intervention your child needs.  For families who prefer to get the ball rolling on intervention service or those who want to know what to expect after the diagnosis, ACT’s New Diagnosis Hub provides practical and evidence-informed information to help families in BC put an intervention program in place for their child. 

Ways of supporting your child at home 

There are many ways that parents and the extended family can help a child with developmental delays in the home and community environment. Experts are very helpful to provide direction but your child is with you much more than with consultants or therapists. Below you will find a list of online resources, including ACT videos, that can give you new insights on how to help your child while waiting for your assessment. 

Consult with community professionals (listed above) who are already working with your child, share your observations and concerns with them and ask for strategies you can implement at home to help your child.

Here are some free, practical and evidence-informed strategies from  ACT’s Information Database and Autism Videos @ ACT including:

ACT’s staff can direct you to helpful information resources such as those listed above. We can also provide you resources on how to advocate for an end to waiting lists for children at risk of neuro-developmental conditions. Email info@actcommunity.ca to start the conversation. ACT’s Facebook page also provides news updates of interest to parents.

Another source of individualized support and/or referral services, is the Ministry of Children and Family Development’s information service, which manages the Registry of Autism Service Providers (RASP) list:

Autism Information Services British Columbia (AIS BC)
3688 Cessna Drive, Richmond, British Columbia, V7B 1C7
Toll Free Line: 1-844-878-4700
Email – Info: AutismInformation@gov.bc.ca
Website: autisminfo.gov.bc.ca/
RASP List: autisminfo.gov.bc.ca/rasp/search

Visit ACT’s Registry of Autism Service Providers information page for more on the RASP.

ACT’s “New MCFD Framework for Children with Support Needs” Resource Page

 

There is information coming from many different sources about the new Ministry of Children and Family Development (MCFD) framework for children with support needs.

ACT – Autism Community Training is organizing this information on a special page of our website. Visit the “New MCFD Framework for Children with Support Needs” page to see the latest information.

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If you are new to ACT, join our confidential email list for updates and more information as it becomes available: www.actcommunity.ca/mailing-list

Follow us on Facebook: www.facebook.com/autismcommunitytraining

Questions for ACT? Email us at info@actcommunity.ca.

Letter to Minister Dean Regarding CYSN Framework & Funding Changes

“All children with disabilities deserve support tailored to their unique needs and strengths without pitting their families against each other to secure those supports.”

Eight organizations from around the province have united in a letter to MCFD Minister Mitzi Dean. The letter is a searing critique of the lack of community consultation and basic information about the radical new framework for CYSN services announced last week by the Minister. The letter also seeks collaboration from other organizations across disabilities to press for systemic change. If your organization wishes to add your name to the signatories, please email info@actcommunity.ca.”blank


Monday, November 8th, 2021

To: Honourable Mitzi Dean, Minister of Children and Family Development Victoria, BC

Subject: CYSN Framework and Funding Changes Dear Honourable Mitzi Dean,

A growing group of organizations representing all children and families under the Children and Youth with Support Needs (CYSN) Framework have come together to discuss their concerns regarding your announcement on October 27th, 2021. Today, we write together on two topics of immediate concern: consultation and information.

First, we call for a review of your decision-making process by revisiting the practices and principles of meaningful consultation.

Second, we request changes to your communication strategy to prevent further harm to the disability community and promote supportive systemic change.

We are deeply concerned about the absence of meaningful and informed consultation with the diverse range of families and children under the CYSN Framework and the organizations that support them. While you repeatedly cite the 1,500 families consulted in 2019 and insist that you continue to hear from families, we consider this past consultation grossly inadequate and inaccurate.

We invite the Minister to define the parameters of future consultation together with the disability community to demonstrate her accountability to the families and stakeholders she serves. There is ample research and dozens of frameworks that outline healthy and meaningful processes of public consultation. Therefore, it is difficult to understand how the Minister believes British Columbians would be satisfied with the minimal and questionable consultation process undertaken. There was no consultation on the decision to remove or reallocate the individualized funding for the Autism Funding Programs or the At-Home Program ahead of the announcement of this decision last week.

Additionally, the way information was released last week has caused confusion and chaos in the disability sector. Your communication strategy does not reflect best practices in change management, nor does it demonstrate your understanding, concern, or care for the people affected by the proposed CYSN Framework. The Left Out report has confirmed that the disability community is struggling 20 months into the Covid-19 pandemic. Sadly, instead of lifting the spirits of families of neurodivergent children, this announcement has added more stress, fear, and emotional weight to the entire community. The heartbreaking testimonials of these families can be found in every corner of the province and on every platform of self- expression.

We respectfully ask you to answer the questions raised by parents across BC and provide detailed information on the strategies, tactics, and funding your Ministry will use to implement the hub-based model. Explaining how this model will operate in the immediate future and into 2025 is a crucial step towards the Ministry building trust, confidence, and calm among members of the disability community. This trust is critical for the Ministry to build with Indigenous children and families if it is serious about reconciliation.

Your announcement and communications appear to be an attempt to cause an unnecessary divide between the autism community and the broader disability community. Your comments have jeopardized relationships and trust by politicizing and prioritizing the needs of specific community members over others. The strategy of removing services from one marginalized group in the name of equality to better serve another marginalized, underfunded group is theoretically, economically, logistically, and ethically flawed. All children with disabilities deserve support tailored to their unique needs and strengths without pitting their families against each other to secure those supports.

The signed are eager to prevent further harm by promoting safe spaces for discussion. We invite any organization representing families under the CYSN Framework to reach out to the hitherto signed organizations to further dialogue about how best to meet the needs of families, children, and youth with support needs in this province.

We call on the Minister to engage in a truly meaningful consultation process and develop a strategy to address the informational needs and concerns of all families affected by these sweeping changes to the CYSN Framework. We demand a transparent and open consultation strategy that will allow room to adjust the model to truly meet the needs of all children and families across the province.

Sincerely,

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Cc: Hon. John Horgan, Premier and President of the Executive Council, and MLA for Juan de Fuca: premier@gov.bc.ca & john.horgan.mla@leg.bc.ca

Ms. Allison Bond, Deputy Minister, MCFD: Allison.bond@gov.bc.ca

Ms. Shirley Bond, MLA for Prince George-Valemount, BC Liberal Party Interim Leader and Official Opposition critic for Seniors Services and Long Term Care, and Health:  shirley.bond.MLA@leg.bc.ca

Ms. Karin Kirkpatrick, MLA for West Vancouver-Capilano and Official Opposition critic for Children, Family Development, and Childcare: karin.kirkpatrick.MLA@leg.bc.ca

Mr. Trevor Halford, MLA for Surrey-White Rock and Official Opposition critic for Mental Health and Additions: trevor.halford.MLA@leg.bc.ca

Ms. Sonia Furstenau, MLA for Cowichan Valley, Leader of the BC Green Party and House Leader: sonia.furstenau.MLA@leg.bc.ca

Ms. Stephanie Cadieux, MLA for Surrey South and Official Opposition critic for Gender, Equity, Accessibility, and Inclusion: stephanie.cadieux.MLA@leg.bc.ca

Ms. Jackie Tegart, MLA Fraser-Nicola Opposition critic for Education:  jackie.tegart.MLA@leg.bc.ca

Mr. Dan Davies, MLA Peace River North and critic for Social Development & Poverty Reduction: dan.davies.MLA@leg.bc.ca

Ms. Teresa Wat, MLA for Richmond Centre and a former member of the Select Standing Committee on Children and Youth: teresa.wat.MLA@leg.bc.ca

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