ACT has sad news to share with the autism community. Dr. Karen Kester, who volunteered at many of ACT’s events, died late in 2021. Karen was a highly respected behavior analyst who supported many children and their families over the years and whose kindness in working with vulnerable families was particularly appreciated. She recently finished her doctorate at UBC, specializing in helping children with anxiety.
This is a great loss for her friends and family, and for those families who have relied on her. Visit her obituary page here.
ACT thanks everyone who has donated in her memory.
截至2021年十月此文發表時間止，Variety – the Children’s Charity 為財務狀況有限的家庭提供私人自閉症診斷的資金。因為收到許多資金申請表，目前資金申請的處理時間大約是八到十周左右。 想了解申請資金的詳細資料，請見 ACT’s Information Database. 另有 Jordan’s Principle 為居住在保留區的原住民提供私人診斷的基金。想了解 Jordan’s Principle，請見 ACT’s Information Database
確認 BCAAN （卑詩省自閉症評估網） 確實收到孩子的轉診要求
我們強烈建議家長與卑詩省自閉症評估網 BCAAN 的 Regional Coordinator（區域聯絡人） 確認對方有收到孩子的轉診要求，以避免轉診過程中出了任何差池而耽誤時間。同時你也可以確認等候時間並詢問對方是否需要其他相關資料。這個動作雖然無法加快時間，但至少能確實避免不必要的延遲。
如果在等私人診斷可詢問是否可上 cancellation list
詢問私人診所或專家是否有 cancellation list，代表如果有其他人取消約診，即會通知時間有彈性的人填補空缺時間。
準備一個文件夾，保存和整理孩子的醫療紀錄和其他相關的發展或行為評估報告。 電子檔案更為理想，因為更方便電郵分享。你也可以開始觀察並記錄孩子在不同環境與不同人的行為表現，筆記或影像紀錄皆可。 這些資訊在將來診斷醫生詢問特定問題或需要填寫問卷時都會非常有幫助。
了解居住地衛生局的聯絡方式，請見 Regional Health Authorities
尋找當地嬰幼兒發展計畫的聯絡方式，可搜尋 Healthlink BC Directory
兒童發展援助計畫（SCDP）與原住民兒童發展援助計畫（ASCD）是為了提供12歲以下有發展遲緩或身心障礙的兒童相關支援，以利他們參與社區內托兒服務的社區計畫。 SCDP 在有照的托兒中心，幼兒園或課後托兒中心協助托兒教職員，家長及孩子。某些地區的服務可延展到 13 至19 歲的青少年。 家長可以自己要求服務或透過社區服務或醫療專業人員轉介。此項服務也是長期經費短缺有等候期，家長務必要及早開始轉介。
尋找當地的兒童發展援助計畫，可搜尋 Healthlink BC Directory
早期療育計畫（EIT）提供社區內的職能治療，物理治療，語言治療和支援服務。 此計畫是針對出生至學齡前，已有或可能有發展遲緩或身心障礙的兒童。家長可以自我轉介或透過專業人士如醫生或護士轉介。 這項計畫經費來自於兒童廳，通常由當地的兒童發展中心提供服務。如同上列服務，因為經費有限，通常家長都要等候服務。
要尋找你所在地的 EIT 計畫，可以詢問你的公共衛生護士，家庭醫生或是當地的兒童廳辦公室。
許多家長因為不堪長期的等候，會考慮尋找私人的治療師，但同時也有許多家庭無力付擔私人治療服務。如果你考慮尋找私人治療師，可以參考 Registry of Autism Service Providers (RASP) 名單。
想了解更多 CYMH 的服務，請見 Child & Youth Mental Health Intake Clinics
注意： 確保你的資訊來源是由有資格的研究學者或臨床專家所提。網路上充斥著許多所謂的奇蹟療法， 不但浪費金錢更浪費寶貴的時間。 ACT’的自閉症資料庫 篩選了上千樣資訊，包含與自閉兒童，青少年，成人及家庭息息相關的多樣主題，供大家參考。努力學習的同時，請注意下面幾點：
- 了解那些問題是自閉症，那些不是。 你的孩子無論如何就是一個孩子，不管最終診斷為何，某些問題（如腸胃消化問題或嚴重行為問題）都應該重視處理。
- 從孩子學習。 每個孩子生來皆不同，每個自閉兒也是如此。 你可以開始觀察與記錄孩子的日常表現，這些紀錄可以幫助你了解孩子的行為模式，發展與學習的進步。 不管孩子是否診斷為自閉症，你都可以將這些紀錄與學校老師或其他治療師分享，幫助他們了解你的孩子。
- 開始研究治療方案。不管最終診斷為何，評估結果很有可能發現孩子有發展遲緩或社交溝通上的障礙，需要行為干預，語言治療或職能治療。評估診斷的醫生或專家通常會提供家長有關治療方案的建議。 如果你想立刻開始治療或是想先做準備，可以參考 ACT的新診斷中心，其中包含科學認證且實用的資訊，幫助卑詩省內的家長為孩子建立有效的治療團隊。
家長和其他家庭成員有很多方式可以在家庭或社區環境裡協助孩子學習成長。專家的幫助固然重要，但事實上，你的孩子與你相處的時間比與治療師相處的時間要長出許多。 以下的網上資訊，包括 ACT 的線上視頻，都可以提供你許多的方法，讓你在等候診斷期間也能幫助孩子成長。
- Baby Navigator: 這是由 First Word Project 與 Autism Navigator 開發的線上資源，幫助家長啟蒙嬰兒早期的學習及語言發展。
- Help is in Your Hands: 這是根據丹佛早期模式 (ESDM) 發展的線上資源，幫助家長在日常生活中加入簡單的干預技巧幫助孩子。
- What Can I Do with My Child All Day? Strategies for Supporting Young Children（如何幫助小齡孩子–在家一整天可以做些什麼？） Dr. Pat Mirenda 和 Dr. Paola Colozzo 主講
- Parents are Teachers Too! Embedding Instruction into Daily Routines and Activities（家長也是老師！利用日常生活教學） Brenda Fossett, PhD, BCBA-D 主講
- Make It Stop! Understanding and Preventing Problem Behaviors（停止問題行為！由瞭解和預防做起） Brenda Fossett, PhD, BCBA-D 主講
- Helping Your Child with Autism Thrive in Sport and Recreation（幫助你的孩子在娛樂運動中成長） Stephanie Jull, PhD 主講
另一個提供個別諮詢和轉介服務的單位是兒童廳的自閉症諮詢服務，他們同時也管理 Registry of Autism Service Providers (RASP) 名單:
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]
RASP List: autisminfo.gov.bc.ca/rasp/search
ACT另有 Registry of Autism Service Providers 相關資訊網頁供家長參考。
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.
- Baby Navigator: online resources developed by First Word Project and Autism Navigator for families to support their baby’s early learning and nurture the development of language.
- Help is in Your Hands: online resource developed based on Early Start Denver Model (ESDM) practices to help parents add simple intervention practices to their everyday routines at home.
- What Can I Do with My Child All Day? Strategies for Supporting Young Children presented by Dr. Pat Mirenda and Dr. Paola Colozzo
- Parents are Teachers Too! Embedding Instruction into Daily Routines and Activities presented by Brenda Fossett, PhD, BCBA-D
- Make It Stop! Understanding and Preventing Problem Behaviors presented by Brenda Fossett, PhD, BCBA-D
- Helping Your Child with Autism Thrive in Sport and Recreation presented by Stephanie Jull, PhD
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]
RASP List: autisminfo.gov.bc.ca/rasp/search
Visit ACT’s Registry of Autism Service Providers information page for more on the RASP.
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.
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.
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
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