ACT News and Resources

What to do while waiting for your child’s assessment

It 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 AID Search.   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 AID Search

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

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 [email protected] 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: [email protected]
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.

Accurate Information Critical – An Update on MCFD and MoE’s Response to the COVID-19 Crisis

ACT apologizes that last week we reported that MCFD was not providing emergency respite to families receiving autism funding. According to multiple sources within MCFD, that was initially the case. However, we missed an MCFD update that clarified that children receiving autism funding are now considered eligible for the $225 a month.This means that $900,000 must meet the urgent needs of some 30,000 families, including 18,000 who receive autism funding.

Unfortunately, many parents are reporting their social worker has said they will not receive the funding. This is not surprising as the $900,000 Emergency Fund is supposed to serve the most challenged with a total of $675 for three months. This means that only 4.4% of families can be supported by the Emergency Fund – 1,333 families to be specific – clearly an insufficient response on many levels to the thousands of families in crisis. And, as only 4.4% of families can benefit, it is unfortunate that many more will be contacting their social workers only to be disappointed.

The confusion around the Emergency Fund has brought home to the ACT team that MCFD’s information, now that it has begun to flow, is becoming difficult to navigate or analyze, with documents sometime arriving by email or on their website, and at times being replaced without clarification 

ACT has decided to collect all relevant MCFD and MOE documents and keep them on a special page of our website so families, and the organizations that support them, can track the commitments the BC government makes to our families. This page will be ready later this week.

ACT is also urging MCFD to send parents updates directly through the Autism Funding Portal, and by email for those who don’t use the portal. This information should also be translated. This would allow social workers to prioritize families who do not have internet access to keep them informed. MCFD could also share information via service providers for families who receive medical benefits. We hope that in future MCFD will alert us when they have new information to share with families. In case that doesn’t happen, please update ACT at [email protected], when you see new developments. 

It is worth acknowledging that the pressure that families are bringing to bear on the provincial government through their advocacy efforts are having an effect. Families and professionals should continue to contact the provincial government. The letters we are receiving from across the province make very real the confusion and distress of families supporting children with diverse needs. In contrast, the Ministry of Social Development and Community Living BC have done a much better job of being compassionate and transparent.  

In the meantime, it is ACT’s assessment that neither the Ministries of Education or Children and Family Development have taken significant measures to support families in crisis. Some families are being offered the option of putting their children in foster care in the absence of enough in-home or school-based supports – an appalling prospect.  

This blog written by a behavior consultant who serves highly vulnerable families captures the situation that community-based providers are facing – not all families have the same degree of resiliency and many children cannot be supported remotely.  Those who have high needs cannot manage without significant wrap-around support from both schools and MCFD. MCFD Minister Katrine Conroy and Education Minister Rob Fleming are due to meet this week. Observers are hoping that they have been properly briefed by those who are working directly with families in crisis and that it translates to more than $10 a month per family. 

MCFD’s rigidity is fueling parent petition – now nearly 7,000 signatures 

A petition to MCFD has reached nearly 7,000 signatures, and is continuing to grow, fueled by parental fears that their children with autism will lose their therapy funding if MCFD continues to refuse to extend the children’s contracts. The primary request is that MCFD allow families of children with autism to have more time to spend their treatment funding, given COVID-19 has shut down most therapy services. 

Is the BC Government Listening to Families of Children with Diverse Needs? 

There is a growing conviction among families and professionals that Minister Katrine Conroy is profoundly out of touch. The number one question that families want Minister Conway to address is why she is refusing to allow a contract extension that would not add costs for MCFD? If she is not blocking an extension, what arm of government is responsible?  Why has the Premier not stepped in? 

Is MCFD trying to balance its books by clawing back autism funding? 

Autism Funding Programs cost government $85 million in 2018/2019. In the absence of an explanation, many families believe that MCFD, a chronically underfunded ministry, is using this opportunity to claw back millions in unspent autism funding at a time when the majority of affected families are preoccupied with survival. Ironically, MCFD, which is tasked with protecting vulnerable children, may be the only B.C. ministry that saves money during COVID-19, while these children and their families suffer the most hardship. 

ACT’s advocacy efforts will continue  

ACT continues to call on Minister Katrine Conroy and Premier John Horgan to provide clear, compassionate and rapid support measures to families desperately trying to care for their vulnerable children. We urge families and the professionals who support them to let them know that this is not the time to focus on balancing government budgets at the expense of the most vulnerable. To read the letters from families that ACT has been copied on, see Community Feedback on COVID-19.  
 

Share your advocacy efforts with the diverse needs community  

We invite the diverse needs community, including professionals, to share your feedback to government on ACT’s Facebook Page or by email to [email protected], if you wish to remain anonymous. We have especially appreciated the insights of Children and Youth with Diverse Needs Social Workers. And we would like to hear from school district staff who are taking the initiative to provide in school support. 


COVID-19: Practical Advice, ACT’s Advocacy, and Specialized Resources

ACT is gathering information to support families during the COVID-19 crisis, including resources specific to those who are neuro-diverse and useful general resources. Our COVID-19 Resources page will be updated as new resources come in.

Requesting reassurances from MCFD for desperate families of children with diverse needs – A request to Premier Horgan

Sent via email March 31, 2020

Dear Premier Horgan,

I am writing to bring to your attention an accelerating crisis among families supporting children with diverse needs. You may not be aware that these families have not received any additional support from the B.C.’s Ministry of Children and Family Development (MCFD) in the midst of the COVID-19 crisis – indeed there is no information on MCFD’s website that acknowledges that these families can expect any help.

As Executive Director of ACT – Autism Community Training, I have been receiving anguished emails from families across British Columbia and enquires from concerned professionals. ACT is a not-for-profit based in Vancouver that provides information and training to the families of over 18,000 children diagnosed with autism in B.C., as well as to thousands of families who have children with other diverse diverse needs. For the past few weeks, we have been working frantically to promote our free resources to those supporting children and adults with diverse needs including a web cast on Anxiety, Autism and COVID-19, scheduled for April 2nd. As a group, our families have high levels of anxiety. We are asking that you take action to have MCFD provide them with enhanced support and to communicate this on the MCFD website so we can reassure them that concrete steps are in process.

April 2, 2020 is World Autism Day, it is also the five year anniversary of the death of Robert Robinson, killed by his mother, who then committed suicide, when she was told by the Prince Rupert office of MCFD that there was no help available for her severely autistic son. There are undoubtedly hundreds of B.C. families who are now extremely desperate. The staff of MCFD, particularly in the area of Children and Youth with Diverse Needs (CYSN), require leadership from their Minister to empower them to support these families. If any ministry is blocking flexible support for these families, this must be rectified to avoid future tragedies.

MCFD’s own data on the number of diverse needs children who normally receive MCFD services and/or funding, and who are currently without support, indicates the significance of this omission.

These vulnerable families have lost access to school, respite workers, childcare workers and behavior interventionists and are struggling to support their high needs children at home. Often these are single parent families living on the poverty line. Some have more than one child with diverse needs. Many have written ACT, copied us on their letters to government or posted messages on our Facebook page describing their concerns. These can be viewed on our ‘Advocating for BC Families’ section of our Coronavirus resources page – look for the button ‘Community Feedback’.

I am particularly concerned that without action on the part of MCFD that more children will be taken into care by Child Protection when they could be supported through CYSN services. MCFD has an unfortunate record, stretching over many years, of neglecting resources for children with diverse needs, especially for children who do not have autism. CYSN has no resources to respond to COVID-19 without special funding. It clear that without additional measures, Aboriginal children are at particular risk of being apprehended.

MCFD has been alerted to the need for a response. On March 18, 2020, ACT sent the Minister of Children and Family Development, Katrine Conroy, recommendations on how to respond to the fears of families by increasing direct funding and loosening the normal restrictions. In the two weeks since we sent recommendations, families have been given no assurances as to MCFD’s preparations to respond to the needs of their vulnerable children. It is noteworthy that the Minister of Social Development Shawn Simpson has engaged with families of adult children. The Minister of Education has also been proactive. But there is a total information vacuum on the diverse needs section of the Ministry of Children and Families’ website. In contrast, the Alberta government has responded responsibly

At a time when many levels of your government have done a remarkable job demonstrating transparency and compassion, it is extremely disappointing to see the lack of engagement of MCFD with the families of vulnerable children it is mandated to support. Thousands of families cannot be expected to spend hours waiting to get through by telephone to their local MCFD office or the Autism Funding Branch – which in any event have been unable to provide specific information. These families are desperate to hear specifics from Minister Conroy as to when their needs will be recognized and addressed. This support needs to be detailed on MCFD’s website.

Families need practical support at this time when all families are feeling significant stress – none more than those who are struggling to cope with their very high needs children.

Please contact me at [email protected] if I can provide any clarification about these concerns.

Thank you for all the positive efforts your government is taking – they are very appreciated by all British Columbians.

Sincerely,

Deborah Pugh
Executive Director

ACT – Autism Community Training – Building Informed Communities
204-2735 East Hastings Street, Vancouver, BC V5K 1Z8
phone: 604-205-5467 | toll-free: 1-866-939-5188 | fax: 604-205-5345 www.actcommunity.ca