安省自由党拒绝为五岁以上自闭症儿童进行IBI治疗，家长愤怒

[guanshui]

自闭症是基因遗传，基本无解，就算吃药能够控制又如何？
下一代还有很高的几率是自闭症
这种循环下去有好处么？

这坛子里已经变成碰到事情就圣母附身了
咋的一看，自然选择，的确很heartless，上来就乱咬的那几位估计都是没经过大脑不知道什么叫自然选择，自闭症是一种什么病

哲学第一课就是自然选择，很有意思的是Trump为什么这么火很大程度上因为他喷的（靠谱不靠谱不说），符合基本弱肉强食的自然理论。

更有意思的是楼主选择性的避开了某些news,
@ottawa_it_blue_collar 你是某C党派来的枪手么？
安省增加333mil$ 用于自闭症services的新闻你怎么没看到呢？
https://news.ontario.ca/mcys/en/201...g-333-million-to-improve-autism-services.html

5岁+已经成型，说好的好钢用在刀刃上呢？

你这话才是没经过大脑、不知道自闭症是一种什么病的乱喷。
基因缺陷只是目前能够确认的一种自闭症成因，只占自闭症人群的极小一部分，绝大多数患者的病因不明。自闭症无药可治，早期干预是目前最好的矫正办法，个别患者需要吃药不是为了治病只是为了控制不恰当的行为。
自闭症有遗传性，但下一代仍是自闭症的几率并不高。而且结婚生子不是一个人就能干成的，很多自闭症患者是不会结婚生子的，你不用担心恶性循环。照你的理论，糖尿病、心脏病、白血病这些遗传率高的病都不要治了，这些人有后代并遗传给后代致病基因的几率远大于自闭症。没有人的基因是完美的，即使是完美的，有遗传还有变异呢。如果有一天你被查出了患有遗传性的疾病，你希望别人对你说“不要治了，应该自然选择，不然遗传给后代循环下去有好处吗”？我们毕竟是人，不是动物。
多数自闭症患儿其实症状不严重，如果能及早进行干预性治疗，很有可能达到正常人的水平，成年后能独立生活，不需要社会救济或照顾，并能为社会做出贡献。对整个社会而言，这样的长期效益和整体效益是最大的。IBI是对自闭症干预治疗的一种方法。
我个人认为安省政府这次对自闭症服务的政策改变未必是不好的，不同人可以有不同看法并发表出来，但你不该不懂装懂、随便乱喷、往别人的伤口上撒盐。

 

[ottawa_it_blue_collar]

你这话才是没经过大脑、不知道自闭症是一种什么病的乱喷。
基因缺陷只是目前能够确认的一种自闭症成因，只占自闭症人群的极小一部分，绝大多数患者的病因不明。自闭症无药可治，早期干预是目前最好的矫正办法，个别患者需要吃药不是为了治病只是为了控制不恰当的行为。
自闭症有遗传性，但下一代仍是自闭症的几率并不高。而且结婚生子不是一个人就能干成的，很多自闭症患者是不会结婚生子的，你不用担心恶性循环。照你的理论，糖尿病、心脏病、白血病这些遗传率高的病都不要治了，这些人有后代并遗传给后代致病基因的几率远大于自闭症。没有人的基因是完美的，即使是完美的，有遗传还有变异呢。如果有一天你被查出了患有遗传性的疾病，你希望别人对你说“不要治了，应该自然选择，不然遗传给后代循环下去有好处吗”？我们毕竟是人，不是动物。
多数自闭症患儿其实症状不严重，如果能及早进行干预性治疗，很有可能达到正常人的水平，成年后能独立生活，不需要社会救济或照顾，并能为社会做出贡献。对整个社会而言，这样的长期效益和整体效益是最大的。IBI是对自闭症干预治疗的一种方法。
我个人认为安省政府这次对自闭症服务的政策改变未必是不好的，不同人可以有不同看法并发表出来，但你不该不懂装懂、随便乱喷、往别人的伤口上撒盐。

为什么拒绝五岁以上孩子的改变是好的？能解释下吗？听广播，确诊自闭症时孩子已经四岁左右了，五岁以上不治疗，还有几天治疗？

 

[金陵]

自闭症早做治疗肯定比晚治疗效果好，好得太多了。但是每个孩子的情况不一样，我朋友的孩子五岁以后还在做ABAtherapy和各种其他治疗，一样进步很大。不要放弃希望！

 

[New Person]

再仔细看了看，还是把new program 转帖有下吧：

Highlights of the new program include:

• Reducing wait times so children can access services sooner
• Transitioning to the new integrated autism program by:
  • Focusing Intensive Behavioural Intervention (IBI) services to children in the appropriate developmental window: ages two to four
  • Gradually transitioning children five years and older currently receiving IBI to more clinically appropriate Applied Behaviour Analysis (ABA) services
  • Providing families with children five years and older on the IBI waitlist with $8,000 in one-time funding to immediately purchase community services or supports based on their children's specific needs as they transition off the IBI waitlist
  • Increasing the duration and intensity of ABA services over four years, starting in 2017, so that services are more flexible and based on children's individual needs.

 

[New Person]

虽然不懂哪种方法更好，但feedback is quite positive:

“We are very excited about what this historic investment means for children and youth with autism and their families. More families will receive the right services at the right time.”
Leslie Suite
Chair, Regional Autism Providers of Ontario

“Communities across the province have been working to develop a system that is more accessible, coordinated and centred on the needs of children, youth and their families. This investment is another step in providing families with the seamless services they have been asking for.”
Jennifer Churchill
CEO, Ontario Association of Children's Rehabilitation Services

“Grandview Children's Centre is thrilled by these significant investments in children's services. This will change the lives of families with kids with special needs. For families in Durham Region, this means getting the right services sooner.”
Lorraine Sunstrum-Mann
Executive Director, Grandview Children's Centre

“Families raising children with autism have been waiting for a long time this announcement. Providing early, evidence-based intervention, when it matters most, will set children with autism on the best path forward. This investment will set the stage for continuous learning for years to come.”
Margaret Spoelstra
Executive Director, Autism Ontario

“This announcement is very good news for the ASD community. Based on scientific evidence, the new plan strongly supports the continuum of care for all children with ASD, expanding intervention services to earlier in a child’s development, which is critical for improved outcomes. I am proud and excited to support the new program based on the advice of the Expert Panel.”
Dr. Wendy Roberts
Vice-Chair, ASD Clinical Expert Committee

“Parents spoke and they were heard. The right service at the right time: individualized, expanded and timely services will be life changing. We applaud the Ontario government's new investment of $333 million to redesign autism services for children and youth!”
Suzanne Jacobson
Founder, QuickStart-Early Intervention for Autism

“It is important to personalize intervention services for children with ASD. This funding opportunity is a significant step in that direction. Early intervention for all, but different intervention at different times is an essential step in the right direction.”
Dr. Peter Szatmari
Chief of the Child and Youth Mental Health Collaborative between CAMH, the Hospital for Sick Children and the University of Toronto

 

[New Person]

这是从Autism Spectrum Disorder Clinical Expert Committee的Executive Summary中摘录的一段：

The effectiveness of IBI or Early IBI (EIBI) for young children with ASD continues to be consistently
demonstrated across the research literature, with increasing evidence that starting IBI at a younger age is predictive
of better outcomes in a number of domains. However, the stakeholders we heard from were in unanimous
agreement that because waitlists for IBI (or EIBI) are so long in Ontario, many children with ASD are aging out of
the effective age range and going on to school without IBI.

One stakeholder commented:
“Parents wait years for their child to come to the top of the list and then live in tremendous fear that their child will be discharged from the program because once their child is discharged there is nowhere for them to go to get further help.”

Based on our focus group discussions with parents, educators, and clinicians we have also heard unanimous support
for the concept that it would be most ethical to give some intensive treatment time to all children with ASD deemed
appropriate for EIBI who are under 5 years of age, rather than give a great deal to a small number of children with
ASD.

 

[New Person]

从以上摘录来看，这个new program 并不象楼主所说的那样十恶不赦，到有可能是个好东西。

 

[New Person]

欢迎懂行的评论，也希望前面积极评论的继续评论。

 

[ottawa_it_blue_collar]

从以上摘录来看，这个new program 并不象楼主所说的那样十恶不赦，到有可能是个好东西。

等候时间长，就砍掉一部分等候的孩子，这是个好东西？而不是想办法减少等候时间？这办法很好。

 

[lindamy]

从以上摘录来看，这个new program 并不象楼主所说的那样十恶不赦，到有可能是个好东西。

听广播里说，省政府不承认Cut，说只是改变，有病孩家长评论说是宝马变成了自行车。

 

[金陵]

分享一下请教内行人的想法。这就是拆东墙 补西墙，原来接受IBI训练的孩子，到了六岁左右就会被discharge，然后进学校系统。除非自己出钱继续做ABA therapy，否则就没有类似服务了。做ABA很贵的，需要大概4万到6万一年。由于政府经费不足，等候做IBI的孩子越来越多，有的孩子等2年才能轮到做IBI，家长怨声载道。政府觉得这样下去，接受IBI培训的孩子年龄越来越大，效率太低，又没有钱增加服务，想了个办法，把一些年龄比较大的孩子从waiting list上去掉。
这当然会使有的家庭受益，有的家庭倒霉。
有的家庭用尽积蓄自己先付钱给孩子做IBI therapy，指望排队轮到孩子接受政府提供的IBI，结果现在还没来得及接受治疗，孩子已经五岁了，政府不管了，当然要抗议。

 

[New Person]

分享一下请教内行人的想法。这就是拆东墙 补西墙，原来接受IBI训练的孩子，到了六岁左右就会被discharge，然后进学校系统。除非自己出钱继续做ABA therapy，否则就没有类似服务了。做ABA很贵的，需要大概4万到6万一年。由于政府经费不足，等候做IBI的孩子越来越多，有的孩子等2年才能轮到做IBI，家长怨声载道。政府觉得这样下去，接受IBI培训的孩子年龄越来越大，效率太低，又没有钱增加服务，想了个办法，把一些年龄比较大的孩子从waiting list上去掉。
这当然会使有的家庭受益，有的家庭倒霉。
有的家庭用尽积蓄自己先付钱给孩子做IBI therapy，指望排队轮到孩子接受政府提供的IBI，结果现在还没来得及接受治疗，孩子已经五岁了，政府不管了，当然要抗议。

Gradually transitioning children five years and older currently receiving IBI to more clinically appropriate Applied Behaviour Analysis (ABA) services?

ABA is not covered?

为什么看到的feedback 都是比较positive的呢？

 

[金陵]

ABA therapy需要psychologist，senior therapist和junior therapist做，价钱很贵的，大概要4-6万加元一年，国家现在给五岁以上的儿童一次性补贴8000加元，那就是杯水车薪。

 

[ottawa_it_blue_collar]

分享一下请教内行人的想法。这就是拆东墙 补西墙，原来接受IBI训练的孩子，到了六岁左右就会被discharge，然后进学校系统。除非自己出钱继续做ABA therapy，否则就没有类似服务了。做ABA很贵的，需要大概4万到6万一年。由于政府经费不足，等候做IBI的孩子越来越多，有的孩子等2年才能轮到做IBI，家长怨声载道。政府觉得这样下去，接受IBI培训的孩子年龄越来越大，效率太低，又没有钱增加服务，想了个办法，把一些年龄比较大的孩子从waiting list上去掉。
这当然会使有的家庭受益，有的家庭倒霉。
有的家庭用尽积蓄自己先付钱给孩子做IBI therapy，指望排队轮到孩子接受政府提供的IBI，结果现在还没来得及接受治疗，孩子已经五岁了，政府不管了，当然要抗议。

这个有点道理，说到底还是政府没钱。

 

[金陵]

这个改变使有的家庭受益了，因为本来接受过政府IBI培训的孩子，被discharge以后是基本没有服务的，现在政府提供有限的ABA服务了。有比没有强啊！