This topic contains 1,792 replies, has 143 voices, and was last updated by  Andrew Kavchak 6 hours, 22 minutes ago.

  • Creator
    Topic
  • #75

    FEAT BC Admin
    Keymaster

    In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

    This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

     


    —-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

    -Hi everyone!

    These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

    Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

    Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

    Sabrina

     


    How To Fight for Funding for Autism Treatment and Appropriate School Placement

    1. Establish a Paper Trail

    Always take notes, documenting major points of all conversations with government and school officials.

    This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

    Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

    Why?

    It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

    In other words, they canit use discretion unfairly under the cloak of secrecy.

    2. Submit all Requests in Writing

    All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

    3. Set Deadlines for Action

    All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

    Why Set Deadlines?

    When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

    How to icci?

    A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

    Who to icci to?

    Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

    Why send a icci copy?

    The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

    What is the sequence of letters?

    Find out the chain of command of the particular bureaucracy you are battling.

    TOP

    Minister
    Deputy Minister
    Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
    and Social Worker
    Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

    BOTTOM

    Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

    Documentation from Experts:

    In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

    When to hire a lawyer?

    If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

    If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

    How to hire a lawyer?

    The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Viewing 10 replies - 11 through 20 (of 1,792 total)
  • Author
    Replies
  • #22893

    Andrew Kavchak
    Participant

    Hi Folks,

    There was another speech in the Senate yesterday by another Senator who revealed that a family member (daughter of a niece) has autism.   There has been a lot of references to a “National Autism Strategy” (or National Autism Spectrum Disorder Strategy, but let’s call is NAS for short) in the speeches in the Senate over the past month. However, I don’t recall any Senator actually delving into details about what should be contained in such a strategy and what its component parts should be.  The federal Government has on numerous occasions unveiled these strategies to address perceived problems where the Government has determined that it can score points by appearing to do something.  These strategies may contain several “pillars” that are related and designed to suggest the “comprehensive” approach.

    I always thought that the first step would be to get the politicians to increasingly use the term and accept the idea that a “National Autism Strategy” would be useful.  Once they accepted the idea, then the next step would be to determine and build some consensus on what should be the component pillars of the strategy.  Obviously, depending on their component parts, some strategies may be show and fluff which accomplish little, while others may be just what we need.  It now seems pretty obvious that the term “National Autism Strategy” is frequently used by Senators in their speeches.  In the House of Commons, Green Party Leader Elizabeth May even asked a question about it (video is on YouTube).  However, I do not believe that I ever read or heard Mike Lake use the expression, which should not be surprising as he never gave me the impression that he believes that one is necessary or worthwhile.

    In 2007, on the eve of a rally that we were organizing on the Hill to mark the anniversary of the Auton Supreme Court of Canada decision, the Tory Health Minister, Tony Clement, held a news conference (the timing seemed deliberate to take away media interest from our event the next day) and announced a five point plan.  It was interesting to note that in his press conference and in the media interviews he did not refer to the package as a “strategy”.  If memory serves correctly, he was quoted as saying something like “we don’t need one” or something like that. The five point plan was the kind of thing that made it appear that there was action, but would not in fact help one single kid get access to treatment any faster. I remember one of the points being a commitment to create a webpage about autism (there were already thousands on the internet at the time) and another was the tasking of CIHR with organizing a conference of researchers in the field (should they not already be liaising and communicating anyways?).

    It seems to me that a National Autism Strategy should (1) identify the needs of the community (e.g., early diagnosis, access to treatment under Medicare, appropriate ABA teaching in the school system, appropriate housing for adults, etc.) all without these absurd waiting lists and unconscionable wait times (years or decades), etc.  (2) identify the gaps between what is available and the identified needs, (3) identify the pillars (components) of the strategy and outline the actions that the federal government plans to take to address these.  It is really important to recognize that the Government has to be realistic about identifying and focusing on key priorities if it really expects to achieve its objectives.  Listing everything as constituting a priority is a prescription for paralysis and sabotage.  Governments simply can’t take on more than a few priorities at a time (and I never got the impression that the CASDA folks understood or recognized this – as evidenced by their leader’s published “rebuttal” of my critique of CAP).  I would suggest that one of the components be that the federal government undertake to convene a meeting of provincial health ministers and that the federal one put some money on the table and negotiate a funding formula to ensure the incorporation of autism treatment under Medicare from coast to coast.  They could also negotiate some standards of delivery and service. If this requires more “ABA certified” therapists and specialists, then let then negotiate a program to increase the education and training opportunities at universities and colleges across the country.   Another component could be an undertaking for the Minister of Disabilities to convene a meeting with provincial education and social services ministers to address the other issues identified above, etc.  A strategy could also refer to targets to be achieved in phases over time, with priorities to be addressed first, and other issues to be addressed in the second phase, etc.

    The speech in the Senate yesterday (copied below) made more references to a “National Autism Strategy” (NAS) and it is interesting to note what this Senator thinks such a strategy would do.  However, first, he mentions the creation of CASDA and suggests that their mandate is to develop such a strategy. Well, this is confusing.  Is the strategy going to be carried out and implement by CASDA or the Government?  Did the Government ask CASDA to develop a NAS?  It seems to me that there is some serious confusion and passing the buck going on here.  As far as I can tell, all that CASDA did over the past three years is consult with respect to the development of a “business plan” for the creation of the CAP project thing, which is not a NAS, and which would likely delay the possible creation by the Government of a NAS since the Government could claim that it is already dealing with autism by funding the new CAP bureaucracy which must engage in “issue identification” before anything can be done, etc.

    A crucial sentence from the Senator is this one: “A national autism strategy will go a long way in helping Canadian families lay down the strong foundation of support and access to programs not only for persons diagnosed with ASD, but their families and caregivers as well.”  Really?  How?  Senator, more details please!

    He goes on to say “A national autism strategy will go a long way towards helping parents access necessary programs and services in an efficient and effective manner.”  Again, how? What programs and services?  What if they don’t exist in the province?  Are there any priority programs and services that the Senator has in mind?

    I love the Senator’s reference to cutting bureaucratic red tape.  I wonder if he supported the CAP and the creation of another bureaucracy?

    And then, in the true spirit of “go big or go home”, the Honourable Senator talks about this mythical NAS as something that would make Canada a “trailblazer” and role model for other countries around the world (yes, he said “world”) and for the public policy for purposes of dealing with other disabilities like “Rett Syndrome”, which, as far I recall from the DSM IV, was already listed on the autism spectrum.  In other words, we can develop a National Autism Spectrum Disorder Strategy, which would serve as a great framework and model for dealing with other … autism spectrum disorders.

    Sometimes I get the feeling that all this stuff is simply too complicated (or requires too much of an effort) for our elected and non-elected representatives. Maybe one day we’ll see the talk, talk, talk turn to action, action, action. I can hardly wait.
    <h2 id=”55″>Autism Families in Crisis</h2>

    <h3 id=”56″>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h3>

    On the Order:

    Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.

    <b>Hon. Tobias C. Enverga, Jr.: </b>Honourable senators, I rise today to speak to this important inquiry of Senator Munson, drawing attention to the tenth anniversary of this chamber’s groundbreaking report,<i> Pay Now or Pay Later: Autism Families in Crisis</i> .

    Although I was not a member of this august chamber when this report was first released, I would like to rise now and speak briefly in support of developing a national strategy aimed at helping Canadian families living with Autism Spectrum Disorder.

    Colleagues, as many senators have pointed out in their thoughtful and passionate speeches on this debate, much good work has been done since this chamber adopted this report 10 years ago.

    Chief amongst this good work is the heightened level of awareness surrounding ASD. This increased awareness has led to further increases in understanding and diagnosing Canadians who fall within this spectrum. Yet with more diagnosis comes an even greater need and greater urgency for the development of a framework to assist this ever-growing number of Canadian families who are dealing with ASD in their daily lives.

    Honourable senators, as awareness has continued to grow around ASD following the Senate’s report, so has advocacy. Shortly after this report was released in 2007, the Canadian Autism Spectrum Disorders Alliance was formed. It is this group’s mission to develop a comprehensive national ASD framework to support individuals living with ASD, as well as their families.

    Although we have started taking steps in the right direction, colleagues, I we can agree that there is more work ahead of us and that more needs to be done to help these individuals and families.

    Honourable senators, we often see persons with autism on film and television portrayed as quirky individuals with amazing talents changing the lives of people around them with their amazing gifts. Oftentimes, the day-to-day challenges of families living with autism are glossed over and the story ends with everyone living happily ever after.

    However, we know that in reality there is a host of challenges, large and small, that Canadian families living with ASD face on a daily basis. Many of us here are either directly affected by ASD, or else we know of someone who is. Autism Spectrum Disorder does not require many degrees of separation to affect all Canadians in one way or another.

    I, myself, have a personal connection to ASD, as my niece has a daughter who has been diagnosed with autism. I know first-hand how crucial and helpful a national strategy would be to assist these countless families from coast to coast to coast.

    Honourable senators, Canadian families living with autism and other forms of permanent disability must face the reality that there will be a lifetime of challenges ahead. From the day of diagnosis until adulthood, parents of children with autism are faced with daily challenges that most people are not quite ready to handle. A national autism strategy will go a long way in helping Canadian families lay down the strong foundation of support and access to programs not only for persons diagnosed with ASD, but their families and caregivers as well.

    Early diagnosis is critical. With a national strategy in place, families with new diagnoses can have access to programs and services that will empower them to help their young children very early on.

    Families tell stories of being lost and alone, especially at the beginning. A national autism strategy will go a long way towards helping parents access necessary programs and services in an efficient and effective manner.

    Consultations with parents at different stages of their ASD journey would benefit legislators as we take a collaborative approach of establishing a national autism strategy. The sharp increase in diagnosed cases of ASD is certainly alarming and we must make every effort in finding ways to create the framework that will benefit all Canadian families living with ASD.

    Honourable senators, as federal legislators, we must match the courage and strength of Canadian families living with autism and provide a legal framework that would cut the bureaucratic red tape that prevents families from accessing the necessary programs, services and critical funding for therapy and support.

    Canada must take a leadership role in addressing the challenges of ASD. A national autism strategy in Canada would serve as a role model that other countries would emulate, allowing them to provide support to families and individuals in a timely and sustainable manner.

    A national autism strategy in Canada can make our great country a trailblazer, showing the world that it is indeed possible, with the help of an established national framework, to help persons with autism become independent, engaged and productive members of society.

    Colleagues, it is my hope that in creating this national strategy aimed at helping Canadian families living with Autism Spectrum Disorder we can apply this blueprint effectively, and with the necessary changes, help Canadian families living with a number of other disabilities.

    Canadians and their families who live with other conditions such as Down Syndrome, Fragile X syndrome and Rett syndrome, to name but a few, could also greatly benefit from the creation of this national strategy.

    But before we run, we must walk. With that, colleagues, I include my voice with the many who have already spoken in this debate in calling for the establishment of a national framework to support those living with Autism Spectrum Disorder.

    Finally, I would like to extend my deep thanks and gratitude to Senator Munson for bringing this inquiry forward. Senator Munson has done much good work for many disabled Canadians and their loving families, and I am truly honoured to support him fully in achieving the goal of creating a national strategy to support Canadians living with ASD and their families.

    (On motion of Senator Martin, debate adjourned.)

     

    #22892

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, how would you like to be told that your child was #989 on a wait list for therapy, and that it could be years before he could expect to receive any from the provincial government?  Well, the fact is that many of us parents, including moi, have been in that boat. However, when we got our diagnosis over a decade ago and filed our application with the Ontario “Preschool Autism Program” for some Intensive Behaviour Intervention theray, we were told that we were on a wait list, and it was not one that worked on a “first come, first serve” basis.  The program administrators took numerous factors into account at the time when they picked the next recipient, including things like what age was the child (they wanted a balance in the program), what neighbourhood you lived in (they wanted to have kids from everywhere), language of service (that balance thing again), etc.  Thus, it was possible to be on the wait list for years and then get kicked off the list at age six without having received any therapy treatment.  One day when I organized a rally in front of the Premier’s constituency office, a parent whose son “aged out and off” the waiting list told a reporter from a local paper “we get the same service here as in Ethiopia, the only difference is that Ethiopia does not have a government”.  What a disgrace! And so in today’s CBC news site, there is this tragic story, which seems so awfully familiar.  Too bad this parent did not show up and speak at the Senate autism roundtable last week.

    http://www.cbc.ca/news/canada/london/autism-wait-times-1.4383953

    <h1 class=”story-title”>Wait times for autism services unacceptable, says London mother</h1>

    <h3 class=”story-deck”>’My son might not receive treatments for years to come,’ says parent Jessica Ashton</h3>
    <p class=”small lighttext”>CBC News Posted: Nov 02, 2017 2:45 PM ET Last Updated: Nov 02, 2017 2:45 PM ET</p>

    A London mother says children with autism aren’t getting the services they need, as parents face years-long waits for therapy despite the importance of early intervention.

    Jessica Ashton says her three-and-a half-year old son was diagnosed with autism last summer.

    She and her husband sought out therapy at the Thames Valley Children’s Centre and were told they were number 989 on the wait list for therapy.

    “At that moment, I realized my son might not receive treatments for years to come,” Ashton said Thursday at a news conference at Queen’s Park with London West MPP Peggy Sattler.

    “I thought to myself: This cannot be happening, because all the research I’d done urged that early intervention and therapy is essential for their future progress.”

    Ashton said the long wait lists for service are an unbearable burden for parents already dealing with the daily stress of caring for children on the autism spectrum.

    Ashton has started a petition with 6,000 signatures, calling on the province to improve wait times so that children can get access to therapy earlier on, when it has the greatest benefit.

    Last month, the province announced a pilot program to provide students with treatment, including Applied Behaviour Analysis, from their therapists at school.

    But the pilot project is only available in 18 Ontario school boards. The Liberal government announced the $533-million Ontario Autism Program earlier this year. It includes a direct funding option, something families have long been clamouring for.

    But Bruce McIntosh of the Ontario Autism coalition said the government programs falls far short of the surging need for services.

    “We’re bailing the boat with a teaspoon and it’s the kids who are drowning,” he said Thursday.

    #22891

    Andrew Kavchak
    Participant

    Hi Folks,

    Two things of note from yesterday in the House and the Senate.

    First, the House…. One of the things that makes the U.S. more progressive than Canada in the field of rights for the disabled is their federal and state disability rights acts.  As you know, we don’t seem to have one federally.  Oh, I know, I know, we have a “Charter of Rights and Freedoms”, but about the disabled, I mean.  I remember years ago bumping into Jack Layton in an elevator downtown and mentioning the need for help for the autism community and he replied that the NDP was working on a disability rights act, but it was taking time because they take consultations “very seriously”.

    Well, what about the Liberals who have now been in power for two years?  Well, surprise! surprise!  At least, it was a surprise for me, as I had not heard about this before (I’m obviously not on my Liberal MP’s “constituents that I love to keep informed and updated” distribution list, boo hoo) .

    Check out this exchange with the PM in the House yesterday:

    Wednesday, November 1, 2017:

    Mr. Speaker, the <i>Financial Post</i> reports, “Sufferers of autism, bipolar disorder, schizophrenia and other mental health issues are the latest victims of a clampdown on access to the disability tax credit”. Families I met with told me how the Liberals had taken thousands of dollars from RDSPs used for saving for their disabled children’s future.


    Could the Prime Minister please explain to Canadians exactly how shaking down our most vulnerable citizens is a fair and balanced approach on taxes?
    On the contrary, Mr. Speaker, this government is committed to supporting our most vulnerable citizens. That is why we are moving forward with a national disability act that will remove barriers through access and success for all Canadians who live with disabilities.
    On top of that, with regard to mental health, I can tell the hon. member that we are delivering record numbers of support and tax breaks through the disability tax credit to sufferers of mental health, more last year than any previous year.
    We are continuing to focus on supporting the most vulnerable. That is what Canadians expect of this government.
    _______________
    So the Liberal government is “moving forward” with a national disability act.  Great!  Where is it?  I did a search on the “bills” database on the Parliament website using the word “disability”.  No such bill came up.
    Remove barriers?  What kind of barriers?
    I suppose one should feel reassured knowing that this PM has confirmed that this government continues to focus on supporting the “most vulnerable”.
    ________________
    Second, regarding the Senate, there was another exchange between the autism champions and the Government representative.  It appears that a few Senators have written a letter to the PM and Minister of Health, requesting a meeting to “share their findings” and try to bring to their attention the study from 2007.  They asked the government rep for his support in trying to arrange a meeting.  Imagine that…we see pictures of Justin Trudeau, it seems, everywhere, whether he is wearing his Superman costume, or photobombing some peoples’ pictures in one place or another, but for Parliamentarians (from what used to be the same political party) to meet with the PM requires a significant amount of public and private pleading and “support”. Fortunately the government rep indicated that he welcomes bringing the letter “to the attention” of the addressees (I thought the PM’s secretary or executive assistant might do that). Of course, the government rep feels compelled to outline what the government has done for autism (bla, bla) and then Senator Munson points out that the “Ready, Willing and Able” employment program for disabled people is in fact set to expire on January 31, 2018 (that is coming up soon!).
    And then, my favourite, in a display of Parliamentary brinksmanship that clearly reflect a profound grasp of how things work and how to get things done in Ottawa, Senator Wanda Bernard stated that there is a need for a National Autism Strategy (where people with “multiple, intersection oppressions” get priority treatment) and then she asked the government rep: “what can you do?” ….you can guess the reply.
    From the Senate Debates, Wednesday, November 1, 2017:
    <h2 id=”37″>Health</h2>

    <h3 id=”38″>Autism Support and Funding</h3>

    <b>Hon. Leo Housakos: </b>Honourable senators, my question to the Leader of the Government in the Senate concerns the ever-growing crisis in this country with autism.

    I was particularly proud last month to co-sponsor the National Autism Awareness Month activities here in the Senate with Senator Bernard and Senator Munson. I want to thank all the senators who rose in the chamber and spoke so passionately in regard to this issue. We are trying to bring attention, given the fact it is the 10-year anniversary of the<i> Pay Now or Pay Later</i> report, in which, once again, a Senate committee showed it was cutting edge in identifying a serious problem in this country.

    We had the opportunity to host a Facebook live panel and other stakeholders here in the Senate. We heard the heart-wrenching stories of families that are dealing with this crisis on a day-to-day basis.

    As a follow-up to the important month we had, where the Senate showed a lot of compassion in listening to people dealing with this issue, my colleagues and I sent a letter to the Prime Minister and to the Minister of Health requesting a meeting so that we can share some of the findings of our discussions with the stakeholders, and also reset and reignite the interest in the historic study on autism that this chamber passed 10 years ago.

    Today we are seeking your support in trying to convince the government of the importance of this issue. We would like to have your support in trying to arrange a meeting for us with the Prime Minister and the Minister of Health, and on an ongoing basis we would like to count on you in giving support to autism.

    <b>Hon. Peter Harder (Government Representative in the Senate): </b>I thank the honourable senator for his question and welcome his question very much.

    Let me begin by congratulating the honourable senator and other senators who have been speaking on this important issue — not just in the last month, although that has been the highlight — but in the last 10 years. We can all be proud of the work that has been done over the years by the Senate of Canada in bringing this issue to the public’s mind and to the agenda of governments.

    I, of course, will welcome seeing the letter and bringing it to the attention of the addressees and seeking an opportunity to deliver the request.

    I would also, though, take the opportunity to acknowledge that over the course of the last five years the Canadian Institutes of Health Research has spent $39 million in advanced research with respect to autism spectrum disorder. In addition, as the honourable senators will know, Employment and Social Development Canada is investing $15 million in the Ready, Willing and Able initiative, which is delivered through a partnership between the Canadian Association for Community Living and the Canadian Autism Spectrum Disorders Alliance.

    These are important investments, but as honourable senators will know, there is always more to be done. The work being done in the Senate, the attention being drawn to this issue, can only help government and engage with ministers. I make a commitment to the honourable senator and others to pursue this.

    <b>Hon. Jim Munson: </b>I am glad Senator Harder brought up Ready, Willing and Able because in that<i> Pay Now or Pay Later</i> report part of the emphasis was on jobs — jobs for those on the spectrum who need to be employed. In fact, one of the persons in that report did say if you pay now, look at the return on the investment. You have people who are in the workforce.

    The previous government followed up on our report with Ready, Willing and Able. As you may know, Ready, Willing and Able is a government funding program that provides individualized assistance for becoming a more inclusive employer, identification of candidates, disability awareness, connections to community agencies that provide employment services and supports and on-the-job support to employees with an intellectual disability or ASD.

    It has come to my attention — and the senator just talked about the program that is in place and that the current government is funding — that the program will cease as of January 31, 2018. So I am hopeful that the discussions under way with the federal government will move on beyond the proposed three-year extension. Without this program, 1,457 employment outcomes achieved to the end of September 2017 would never have materialized.

    (1440)

    Will the government renew the funding for this essential program that enables individuals with intellectual disabilities to thrive as members of our workforce? Will we pay now or pay later?

    <b>Senator Harder: </b>Again, I thank the honourable senator for his question and for his and other senators’ work in this area. I would be happy to take his request for ongoing funding to the minister.

    I would also, in that context, reference the request of the Honourable Senator Housakos so that there can be a direct conversation on this matter.

    <b>Hon. Wanda Thomas Bernard: </b>Honourable senators, my question is for the Government Representative in the Senate. Senator Harder, as my colleagues Senator Housakos and Senator Munson have reminded us, during Autism Awareness Month in October, we heard from many senators that there is a need for a national autism strategy. I want to take this opportunity to thank all honourable senators who have spoken in support of this initiative.

    Many of us who spoke advocated for the improvement of services on behalf of our communities. Senator Lankin, only yesterday, reminded us of the need to address gaps across the lifespan for individuals with ASD. Senator Christmas informed us of the needs of indigenous communities, and I spoke of the needs of African-Canadian families.

    I believe that families and individuals living with ASD, who experience multiple, intersecting oppressions, should be made a priority in the national autism strategy.

    My question, Senator Harder, is: What can you do to help us to get the government to move forward with more actions? Thank you for reminding us of the investments that have been made, but we know that there are still many gaps and much more that needs to be done.

    <b>Senator Harder: </b>Again, I thank the honourable senator for her question and for her work with other senators, both those who have spoken on this matter and others.

    Let me make the commitment to bring the work of the Senate, particularly the focus of the last month, to the attention of the appropriate ministers and, in response to Senator Housakos’s question, to seek an opportunity for senators to engage directly with the ministers concerned.

    #22890

    Andrew Kavchak
    Participant

    Thank you Franca for your message.

    Incidentally, I just realized one error on my part in the last post….the person who spoke about urban and employment issues at the roundtable was from Autism Speaks, and not the Autism Society of Canada (as I falsely stated). Oops.  Sorry for the mistake and confusion.

     

     

    #22889

    Franca Pastro
    Participant

    Hi Andrew,

    I want to thank you for your diligent reports on what is happening (or not) at the Parliament buildings in Ottawa.  It is a long way away from us and often we don’t hear what is really going on.

    Franca

    Victoria, BC

    #22888

    Andrew Kavchak
    Participant

    Hi Folks,

    One of the last Senate speakers made some reference to the numbers of viewers who watched the live streaming of the Senate Autism Roundtable last week on Facebook. I think they said there were 9,000 viewers or something. I decided to take a look at the video recording of the roundtable on YouTube.  It is available at:

    There are 267 views.  The French version has eight (8) views.  There is also a video of Senator Leo Housakos from the roundatable event (he spoke for a few moments at the very end) and it has “No views”.

    The video is an hour long and so I tried to watch through it, although I skipped over some parts by some speakers once I thought I got the theme of what they were saying.  There were a number of speakers from different sectors of the autism community (e.g., a professor who studies it, a person conducting research for the Autism Society of Canada, a “self-advocate” student of business in college, a psychologist, a mother of two kids, and the director of an education centre….and, of course, three Senators).

    What the event reminded me of was some sort of social networking exercise where everyone talked for a few moments about themselves and their experiences and what they learned. At the end, the whole thing was a big stew where everyone threw something in the pot.  Some things struck me as I watched and scanned through the video.

    First, while the Senate report of 2007 was referred to a lot, I did not detect any mention of the Auton case decision of the SCC of that same year and its meaning or consequence. The issue of Medicare coverage for autism treatment did not come up.

    Second, numerous speakers stated that “self-advocates” are very important to understanding autism and people living with autism are like. However, the self-advocate who spoke (flawlessly, I might add), indicated that when he had his first job, he waited two years and four months (yes, 28 months) before telling his employer that he had a disability. How I wish, if my son had to have autism, that he would have that kind….where he could get a job and his employer would not ask him whether he needed any special assistance to do his job, but instead my son could function without the disability being noticed. It is a wonderful story….but has nothing in common with my son’s situation.

    Third, the mother of the two kids on the spectrum spoke about the benefits of early intervention and she actually mentioned “ABA” (I did not detect anyone else speaking about ABA, although the professor at one point spoke about “interventions”).  The mother stated that her kids got some from the provincial government, and that they were able to afford expensive treatment in the private sector.  Now her older boy can’t stop talking. She spoke about treatment being “cut off” when the boys reached the age of six and the need for more private sector treatment.  However, I did not hear her say the word “Medicare” and I did not hear her argue that the treatment should be fully covered under Medicare without any age cut-off, etc…

    Fourth, the person from the Autism Canada (our supposedly national association) made reference to many priorities (when everything is a priority I wonder what is a “priority” again?) and about services in rural Canada and employment challenges.

    Fifth, during the question period there was a high profile lawyer (named Laurence Greenspon, who had the same last name as the mother who spoke and was perhaps related) who took the microphone and looked a little surprised. He said that it has been 10 years since the Senate report, and he asked the people around the table “what is the first step, in your opinion, to getting a National Autism Strategy?”   Ah! Finally!  Somebody asked something concrete relating to a real work plan and next steps.  Although there were many references to National Autism Strategy, I did not hear anyone talk about what should such a strategy consist of, and I did not hear anyone talk about the Health Minister negotiating a “autism treatment accord” to get autism treatment covered. Yes, someone said that people should not have to deplete their savings to pay for treatment in the private sector, but the logical conclusion of the thought….(e.g., what is the required public policy) was not elaborated on. In response to the lawyer’s question, Senator Munson stated that the Senate was going to pass this motion, and deliver it to the cabinet and the Prime Minister. He stated that the Senate was not going away and was going to seek a meeting with the PM.  Senator Bernard then said that the time has come to move beyond awareness and take action.

    Well, in the past 10 years the Senate did not seem to have any influence on the Harper cabinet, and so far, the Liberal government has been non-responsive. In fact, Trudeau even booted the Liberal Senators out of the Liberal Caucus (all of them) a long time ago.

    Thus, while I wish the Senators good luck with their motion and trying to move the Cabinet on the autism file to adopt some meaningful public policy, I suspect that the issuance next year (expected) of the Public Health Agency of Canada (PHAC) first report on the Canadian autism prevalence rates will probably be the thing that might spur Government action. However, given that this data was first called for by former Tory Health Minister, Tony Clement, back in 2007, it will probably take another long period before the date leads to any action (if any).

     

    #22887

    Andrew Kavchak
    Participant

    Hi Folks,

    Well, “Autism Awareness Month” came to an end yesterday. In each of the 10 sitting days of the Senate, one or more Senators got up to make a speech. Yesterday was the turn of the Honourable Art Eggleton, former Mayor of Toronto, Cabinet Minister in the Chretien government, and chair of the Senate committee that produced the “Pay Now or Pay Later – Autism Families in Crisis” report of 2007. I don’t recall him actually doing much over the past 10 years to keep his committee report from being relegated to the dust collection shelves in the Library of Parliament, but perhaps I simply missed it.  Another Senator also spoke yesterday. The transcript is below.

    I did not see anything this past month in the House of Commons about autism (apart from including it in a list of disabilities for which the disability tax credit is now a hot political potato again following the CRA’s recent crackdown). So what will happen next?  What follow up action is planned by the organizers of the roundtable that took place in Ottawa last week?  I have no idea.  Senator Munson and Eggleton will likely retired in a few years….and maybe Senator Wanda Bernard will carry the torch…and organize another anniversary roundtable in five years or ten (or more).   I hope I’m wrong, but from what I see at the federal level, the two things looming on the horizon that may provide some action are: (1) the Liberal Party working group’s expected report on the policy resolution about funding autism treatment in Medicare, and (2) the expected PHAC first report on autism prevalence rates in Canada.  The report is expected to be issued next year and should raise questions about what needs to be done and what the governments of this country should do. However, it will be interesting to see if the federal Government will issue the report in such a way as to attract media coverage (e.g., full press conference, etc.) or whether they will nonchalantly issue it on a Friday at 4:59 p.m. without any press conference, etc.  We’ll see..

    From Senate Debates, Tuesday, October 31, 2017:
    <h2 id=”97″>Autism Families in Crisis</h2>

    <h3 id=”98″>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h3>

    On the Order:

    Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.

    <b>Hon. Art Eggleton: </b>Honourable senators, I rise today to speak to the inquiry on autism tabled by Senator Munson.

    I had the pleasure of chairing the Standing Senate Committee on Social Affairs, Science and Technology when we conducted the study of<i> Pay Now or Pay Later: Autism Families in Crisis</i>. It has been 10 years since that study was completed, yet we are still contending with some of the very basic problems we encountered a decade ago.

    Over the course of that study, the committee struggled not only with the complexity of the issue but also with the varying opinions that were on offer. For example, the committee heard, on the one hand, that although there has been a rise in the number of cases of autism, this was due to increased sensitivity and changes in the diagnostic criteria. On the other hand, other witnesses stated that there is in fact an autism epidemic of staggering proportions.

    Moreover, we are still not entirely sure what causes autism in the first place. Research on identical twins suggests that genes likely play a dominant role, and yet other studies have suggested that environmental factors play a role as well.

    That these debates are still ongoing highlights the complexity of the issue. Yet, our job as policy-makers is not to debate the science; rather, it is to take what we know and try to make life more manageable for the individuals with autism and their families.

    What we know is worrying. At the time of our study, 1 in 166 Canadians per year were being diagnosed with autism spectrum disorder. Today it is 1 in 68.

    Being autistic or having an autistic family member increases your chances of financial hardship. A staggering 80 to 85 per cent of adults with ASD are unemployed or underemployed. On average, the cost of raising an autistic child in Canada is estimated to be at $60,000 a year. Compounding the problem is that, more often than not, one parent will quit their job to care for the child.

    Our study contained a number of important recommendations meant to tackle these and many other issues, the most important of which was that the federal government, in collaboration with the provinces and territories, establish a comprehensive national autism strategy. Ten years later, we are still not there.

    This failure to act has had very real consequences. In 2014, the Senate Liberals held an open caucus on autism. We heard testimony from those with autistic children, and those with autism themselves. What we heard were stories of families uprooting their lives to move where they hoped better programs would be available. One family moved from Ontario to Quebec because they could not find an appropriate level of service in French. Another family actually moved to Australia because of inadequate supports here.

    These and other stories highlight a missed opportunity. Continuing study is finding that we are squandering the potential of those with ASD. In the workplace, many of the characteristics you typically find in someone with autism make them suitable for certain professions. For instance, some individuals with ASD will demonstrate an uncommonly focused interest in a particular subject. This can be a boon for an employer if that interest fills a need.

    I read of one individual with Asperger’s syndrome who, when asked what he most enjoyed about his job, answered, “solving software engineering problems.” Then he was asked what his favourite hobby was, and his reply was “solving software engineering problems.”

    What is good for the individual is also good for society. An autistic individual with gainful employment is one less person who relies on social services to get by. Of course, not all individuals with autism will succeed in the workplace, but too many are not even being given the chance.

    In the 10 years since our study, the method of diagnosis has also advanced. By the age of 2, a doctor can often discern from a questionnaire filled out by the parents whether a child has autism. If caught at such a young age, certain treatments can encourage learning and interaction during a time when the brain is most malleable. Yet, the average age of diagnosis in Canada is four and a half, often too late for these therapies to have their intended effect. That is a shame. One American study showed that if caught early enough, these therapies paid for themselves within eight years by reducing the need for extra help in school.

    That, honourable colleagues, is just one example of what is meant by “pay now or pay later.” The right investments today can prevent higher costs in the future. More important, such investments will go a long way in improving the circumstances of those diagnosed with autism and their loved ones.

    I would ask you to join Senators Munson, Housakos and Bernard in calling on the federal government to act on the recommendations of our report. Only then can we begin to improve the lives of those affected by autism in a very meaningful and lasting way.

    <b>Hon. Frances Lankin: </b>Honourable colleagues, I’m pleased to rise for some relatively brief comments on this. It would have been a bit longer, but Senator Eggleton spoke to a number of the issues I wanted to raise.

    First may I extend a tremendous thank you, Senator Eggleton, to you, to the members of the committee and to the Senate for having tabled this very important report 10 years ago. It is difficult for us to see that so many of the recommendations have yet to be enacted at all or have been enacted in part. We had then, and we still have now, a piecemeal approach to working with individuals with ASD and their families, fragmented within provincial jurisdictions and across provincial jurisdictions.

    (1710)

    Thus the call for a national strategy, I think, is a compelling and necessary one for us to continue to focus on. I also add my thanks to Senators Munson, Housakos and Bernard. In particular, Senator Bernard hosted an event for us during Autism Awareness Month that allowed some of us to meet with advocates from the community. I found that very helpful. It was good learning and helped to refresh facts that I knew once and had lost track of. I spent some time in the Ontario legislature and this was a big issue then. That was many years ago and it remains a big issue with largely the same things being said.

    When I thought about this and listened to the kind of remarks people have made, there’s been a tremendous focus on children with autism. Senator Eggleton’s quite right; if we can get to young children with the kind of therapeutic interventions at an early enough age, we can make a huge difference. I think governments often groan at the phrase “If you invest now, you’ll save money later,” because the recapturing of that and the reinvestment of that is always difficult, but again it is such a compelling argument to make. We are spending money on treatment and intervention at a time, perhaps, when they are less helpful and less preventive than they could be.

    So it’s important for us to, once again, understand the most recent evidence and understand that the programs that we are supporting and investing in with taxpayers’ dollars are having the biggest impact that they could.

    As I started to think about all the children who we still don’t have the right resources for, I also thought about the children who, as parents and families call it, “time out of our system.” They reach an age where the supports that are available through the health system and/or through the school system are no longer available for them. More and more, we have a larger number of citizens who are being diagnosed with this who are becoming adults and living adult lives with all of the hopes and aspirations that all of us have and would have for our children but have not had the supports along the way. And once they turn 18, there’s very little available for them.

    In my office we did a little bit of work trying to find information on autism and adults, and there’s not a lot. There are references to what we don’t know.

    There are references, as Senator Eggleton said, to the diagnosis rate that has increased. Four years ago now, when there was an Ontario-based report released out of the University of Toronto, the rate was 1 in 88 and as you said now it’s 1 in 68. No one knows whether it is better diagnoses or whether it is later onset or whether it is a combination of those things. We just don’t know. We don’t have enough information.

    But we do know that there’s a growing population of adults who are living with ASD, and there is a much broader description of the syndrome involving people who are at a high functioning or Asperger’s level right through the whole spectrum.

    One of the things that really concerned me when I looked at this report from four years ago from Ontario — it is entitled <i>Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems</i>.

    The news coverage at the time — I appreciate Dylan Odd in my office went back and searched and found a<i> Toronto Star</i> article that called this a groundbreaking adult autism survey and it reveals a mountain of unmet needs.

    At that time they were talking about 52 per cent of people with high-functioning autism or AS, Asperger’s Syndrome, were diagnosed before 21 years of age. That means there is a larger number of adults being diagnosed within the spectrum. I think we have to really look at what happens to those individuals.

    We know that many of them report that they have multiple medical conditions. I won’t go through them all, but they’re also prescribed multiple types of medication. We know that many of them have taken some post-secondary education, have completed degrees, certificates, diplomas, bachelor degrees, masters degrees. In this study of several hundreds of people, there was a number who had completed MDs, PhDs and LLBs. Those people and those skills and those credentials doesn’t mean that it translates into a life of productivity and employment or economic sustainability for oneself or one’s family.

    In fact, we know that of those who are employed, the majority of them earn less than $30,000 a year. That was four years ago. I suspect that number isn’t much different now.

    Why do I focus on that? We know that 4.3 million Canadians with ASD are living in poverty. We have a poverty problem in this country. We know that people with other mental health issues, a large majority are living in poverty. We know that employment is such a necessary underpinning of good social structure and connections, in fact, leading research in the last few years from the Centre for Addiction and Mental Health puts forward that the aspiring workforce — that’s the name they give people who have had mental health challenges, ASD challenges, psychiatric challenges. Survivors all over the system. Many people have multiple interconnections of those things. The aspiring workforce is what they call them. For people to have connections in a workplace builds a social foundation to their lives that is absolutely critical.

    One of the other statistics in this report referred to the number of people living with ASD. I’m not finding the exact reference right now, but I will. A number of people living with ASD find that they have less than one social interaction a week with others. Can you imagine the sense of isolation? Can you imagine the deprivation of stimulation? Can you imagine the attendant mental health problems that come along and on top of the ASD? It is an issue for us to understand more and to certainly address.

    In looking at the incomes of adults with ASD, those who are earning under $30,000 — this is an Ontario-based survey — the majority of them are gaining support from the Ontario Disability Support Program, which is the side-by-side program with Ontario, essentially, welfare and disability, if I can put the two together in that sense. It’s one program, but there are two streams.

    When I participated in a review of that program, we found that the fastest-growing area of reliance on broad social assistance was in the area of disability support, and the highest presenting issues or disabilities, along with the second presenting issue, were mental health issues. Exponential growth. ASD is one subsection of that, but again, there are many interrelations.

    How do we get at that issue? Again, we don’t have all the answers, but workplace accommodation, what does that mean for people who are facing challenges that may be behavioural, that may be social, the way in which we work and interact with each other? We found in the work that we did that a tremendous amount can be accomplished with a focus on job development, so working with employers to actually develop jobs, shape them and make a useful job, a productive job, a job that supports the goals and aims of the corporation or the organization but can be worked and adapted to the individual needs of a person on Ontario disability support who wants to try to re-enter the workforce or to enter the workforce in the first place.

    So there is a route. There are some very well-developed pilot projects and there are some things that we can build on, but it has to be done in a way that connects it with the other supports, programs and treatments that are a necessary part of responding to ASD and to the growing challenge across our country.

    (1720)

    That’s why, although most of this rests within provincial jurisdiction, the idea of lifting our eyes to a national strategy, to a federal-provincial coming together to map what’s happening, identify the gaps and close those gaps in a coordinated way is absolutely essential to really make progress on behalf of individuals with ASD, their families and the organizations providing service to them.

    The last thing I want to comment on is that when we think about this issue in relationship to the statistics — 4.3 million people with ASD who are living in poverty — we understand that even the social support programs that are there, as I mentioned, are not doing the job they need. That speaks to the reform that’s required within those particular programs.

    However, what disturbs me the most is those who don’t even make it to being diagnosed or don’t make it to a program like the Ontario Disability Support Program and similar things in all provinces, and those are the people who end up on base welfare programs — often men, often living in shelters, often homeless, doing day shelter or overnight and then out on the streets — and without the connection to supports, the connection to the reality of the world around them and the connection to skills to be able to even think about entering employment. That’s a group that’s completely lost. We only see them on street corners and grates, and we don’t understand the connections to all these broader issues that we have.

    Honourable senators, I wholeheartedly support the call for a national strategy. I hope that in that we can, yes, do the very necessary work to get to children as young as possible and to change the shape of their futures, but I hope we won’t forget the growing numbers of adults living with this disorder who are isolated in their homes and kept out of the workforce because we don’t do enough to accommodate, understand and develop jobs for them and who could be living a much more productive life and being a vibrant and giving part of our communities. Thank you very much.

    (On motion of Senator Enverga, debate adjourned.)

    #22883

    Andrew Kavchak
    Participant

    Hi Folks,

    More speeches in the Senate yesterday…

    Thursday, October 26, 2017
    <h2 id=”74″>Autism Families in Crisis</h2>

    <h3 id=”75″>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h3>

    On the Order:

    Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.

    <b>Hon. Kim Pate: </b>Honourable senators, I rise today to speak on the inquiry of Senator Munson calling attention to the Senate of the tenth anniversary of its groundbreaking report<i> Pay Now or Pay Later: Autism Families in Crisis</i>.

    [<i>Translation</i>]

    I congratulate Senators Munson, Housakos, and Bernard for their exemplary leadership on this file and for raising public awareness about autism.

    [<i>English</i>]

    Autism affects every sector of society. A national autism strategy must be alive to the systemic barriers and negative attitudes that impede access to ASD-related services across multiple sectors.

    The criminal justice system is no exception. In fact, research over the past two decades shows that people with ASD and other developmental disabilities are seven times more likely than the general population to come into contact with law enforcement during their lifetime. Since co-occurring mental health conditions such as anxiety and depression are common in individuals with ASD, prisoners with ASD suffer in prison environments.

    Honourable senators, we must ensure that people with ASD and other disabling mental health issues are not imprisoned because they cannot access the resources and therapeutic support they need in the community.

    Yet, just this past week two such situations were brought to my attention.

    One is a young man whose parents, one a police officer, were encouraged to call the police when their adolescent son’s aggressive outbursts became difficult for them to manage. They were incorrectly advised that there would be more services for their son in the criminal justice system. This was not true, and now they have a more unruly son whose trust in his parents has been severely shaken and whose parents are now expending thousands of dollars on lawyers and medical assessments to try to extricate him from the system. If they manage to do so, they will then continue to experience the pre-existing series of challenges a result of the inadequacy of the supports, services and resources available to provide much-needed assistance.

    (1510)

    The other situation involves a woman serving a prison sentence, a woman the prison staff consider to be so incapacitated that they have argued that she is not capable of consenting to assessments, much less treatment. Her mother has advised that her daughter was previously diagnosed as autistic.

    She is segregated in a maximum-security unit, as this is the easiest place for staff to manage her self-harming behaviour. When they deem her to be out of control, they pepper-spray her. Then when they take her to the shower area to decontaminate, instead of staff turning on the water for her or advising her to do so herself, they leave her there. Instead of turning on the water to relieve the burning sensation of the pepper spray, she responds to the pain by punching herself in the face. One videotaped incident records her bashing herself some 100 times. The day after that incident, not only was her skin burned from the spray, but she was so battered that she was described as looking as though her head and face had been beaten with a bat.

    These are but two of the reasons we need to invest now in community-based supports and services. It is also why we must ensure that those we do not prevent from being criminalized or imprisoned are moved out of prisons and into provincial or territorial health services. In the federal prisons, section 29 of the Corrections and Conditional Release Act allows for such transfers for prisoners for the purposes of accessing necessary health care.

    Families must be equipped with adequate resources and guidance to support children with ASD. As senators who have spoken before me have underscored and as research supports, intervention at an early age can improve a child’s chances of reversing some of the effects of autism. However, most families struggle to bear the enormous costs of raising a child with autism.

    The situation is particularly dire for children and their mothers who are incarcerated and those who live below the poverty line. Most mothers who are incarcerated are the sole providers of their family’s needs at the time of their imprisonment. Their imprisonment carries with it devastating consequences of depriving their children of care. This burden is especially unbearable for children in need of special care, including children with autism.

    When Nelson Mandela, himself a former prisoner, came into power in South Africa, he ordered that all mothers with children under the age of 12 be freed from prison. In justifying his decision, he characterized it as part of “A collective effort [that] has to be launched by the government, civil society and the private sector to ensure that every child is looked after, has sufficient nutrition and health care.”

    As we look toward a national strategy for autism, we too must recognize and support the role that mothers play in caring for their children’s health on a day-to-day basis, particularly in families lacking other resources for care. We must ensure that the correctional system does not continue to further burden impoverished children with ASD by sentencing mothers and their children to separation.

    We also need to address the stigma that prevents parents with criminal records from providing educational supports to their children with ASD. Some of the mothers I know who wish to volunteer to provide in-class support for their children are prevented from doing so because they have criminal records. Community-based alternatives to imprisonment, as well as increased access to resources envisioned by the report<i> Pay Now or Pay Later: Autism Families in Crisis</i>, will be instrumental components of any viable strategy to help people with ASD.

    We must also be mindful that autism does not discriminate on the basis of race, ethnicity or socio-economic status. As such, it is a grave injustice to allow these differences to obstruct a national autism strategy. Indigenous communities have struggled to access ASD-related services because of systemic racism and social isolation. Any framework for a national autism strategy must be sensitive to the needs of marginalized groups if we are to ensure fair and effective delivery.

    Honourable colleagues, many of us call on you to endorse the recommendations of the report<i> Pay Now or Pay Later: Autism Families in Crisis</i>, as well as the removal of systemic barriers across diverse communities and within the criminal justice system. Both approaches are integral to a nationwide strategy committed to helping people with ASD and the families that support them.

    Thank you. <i>Meegwetch</i>.

    <b>Hon. Jane Cordy: </b>Honourable senators, I am pleased to speak today to Senator Munson’s inquiry calling our attention to the tenth anniversary of the report<i>Pay Now or Pay Later: Autism Families in Crisis</i>. I was fortunate to have been a member of the Standing Senate Committee on Social Affairs, Science and Technology 10 years ago when we studied the issue of autism in Canada and the challenges that Canadian families faced accessing specialists and support programs.

    I want to thank Senator Munson so much for continuing his excellent work with the autism communities across Canada over the past 10 years.

    Honourable senators, a lot of progress has been made over the last 10 years. The federal government has brought forward assistance and tax benefits, and there have been investment and employment assistance initiatives. The committee’s report was also the catalyst for the creation of the Canadian Autism Spectrum Disorder Alliance, CASDA. It was formed in July 2007, shortly after the release of the Senate report. The alliance’s mission states:

    CASDA is a coalition of organizations and individuals developing a comprehensive National ASD Framework. It is committed to ensuring the implementation of a comprehensive National ASD Strategy that addresses critical gaps in funding and policies, which are preventing individuals with ASD and their families from exercising their equal rights as Canadians.

    Our report made it clear that for real progress, a unified effort would be required, by both government and the autism spectrum disorder community. Unfortunately, honourable senators, what has not changed is the need for a national autism strategy in Canada. One of the most important recommendations — if not the most important recommendation — from our report was the development of a comprehensive national autism spectrum disorder strategy here in Canada.

    It is now 10 years later, honourable senators, and we still do not have a strategy.

    Progress has been made in the areas of autism advocacy, awareness, understanding and diagnosis, thanks to the work of people like Senators Munson, Housakos and Bernard, and those families facing the challenges of autism. It can be disheartening, however, to hear time and again that the same issues and challenges families face today are many of the same issues and challenges we heard about 10 years ago when the Standing Senate Committee on Social Affairs, Science and Technology tabled the report<i> Pay Now or Pay Later: Autism Families in Crisis</i>.

    Senator Munson pointed out in his speech that a child who was eight at the time the report was released is now 18 years old and is an adult. As an adult, they can no longer access programs that are available to children. Assistance programs and supports become more limited as children with autism spectrum disorder become adults. ASD is a lifelong disorder, and Canadians on the spectrum require lifelong support programs to thrive and fully participate in their communities.

    I remember when I was teaching elementary school, and people referred to autism as a children’s disorder. It’s not a children’s disorder. It’s a lifelong disorder that you will be faced with for the rest of your life. We can’t stop programs for children and not have them for adults.

    Yesterday was Autism Awareness Day at the Senate. To mark the occasion, Senators Munson, Housakos and Bernard took part in a Senate of Canada first: They hosted a Facebook Live panel discussion. The panel included participation from various autism spectrum disorder stakeholders on Parliament Hill. The event was truly a success, and I was able to watch it on YouTube later in the day. Honourable senators, it was a wonderful event, and I encourage those of you who did not have a chance to attend or watch the panel live to seek it out later today or over the weekend on YouTube.

    Over 1,400 people checked in on the panel online during the broadcast and participated with positive comments. And as of this morning, the communications team has told me that the event has now reached almost 9,000 people.

    (1520)

    That number continues to increase, and will increase further if each of you watches it this weekend. The panel discussion touched on many of the issues the autism community faces, including lack of services, children aging out of programs and therapy, and lack of concrete statistics.

    At the end of the panel, the floor was opened to those in the room who wished to speak. Jack, a 13-year-old son of one of the presenters, spoke to the panel about his experience of being teased at school because of the stigma attached to living with Autism Spectrum Disorder and the lack of understanding regarding it. It was very moving to listen to Jack speak. As Autism Nova Scotia says in its mission statement: Understanding—Acceptance—Inclusion.

    Another panel participant, Esther Rhee, National Program Director of Autism Speaks Canada, succinctly addressed the one major missing piece on true progress on autism in Canada when she said:

    In order for us to move forward, we must work collaboratively. And the federal government is the driver of collaboration and in-field advancement.

    She went on to say:

    In order to make the monumental gains that are required in our community we do require the federal government to come onboard and support the development of a national autism strategy.

    I want to thank Senators Munson, Housakos and Bernard for their participation in such a positive event. I would also like to thank the Senate Communications team for their hard work in making the event happen. The Communications team in the Senate continues to excel at sharing what is happening in the Senate.

    Honourable senators, it is encouraging to see the Senate speak with one voice on such an important issue that affects so many Canadians and their families — families who are still in crisis. After 10 years, I am hopeful that the federal government will hear the Senate’s call to action. It is time for the federal government to move forward with a national Autism Spectrum Disorder strategy and to be the driver of collaboration.

    (On motion of Senator Mercer, for Senator Eggleton, debate adjourned.)

    #22882

    Andrew Kavchak
    Participant

    Here’s a great example of some grassroots agitation and successful lobbying…

    An outfit in Ontario called the “Ontario Autism Coalition” (https://ontarioautismcoalition.com/) conducted a survey of families with kids with autism about their views with respect to services at school.  Not surprisingly, a majority of parents expressed the “not satisfied” feeling.  Yesterday I was listening to CBC radio in the late afternoon and on the news program there was a major report about the OAC’s survey and its results.  I wrote to the OAC team to congratulate them on their initiative!  Hopefully the Minister of Education will take note and do something.

    (Side note: the founders of the OAC came to my home here in Ottawa over a decade ago when we organized a protest in front of the constituency office of the then Premier, Dalton McGuilty, oops, I mean McGuinty).  They are a truly good group of people working hard (and for a long time) for the betterment of conditions for people with autism in Ontario.

    Here is the CBC story on the web:

    http://www.cbc.ca/news/canada/toronto/autism-education-rally-queenspark-1.4372525

    #22881

    Andrew Kavchak
    Participant

    Hi Folks,

    Do you think the Senate sent an invitation to officials from the federal department of extortion, oops, I mean the “Canada Revenue Agency” (CRA) to their “Autism Awareness Day” roundtable which was part of the Senate’s “Autism Awareness Month” campaign?  I doubt it, and that’s too bad, for the day after the roundtable and resource fair, the Ottawa Citizen newspaper had an article about the latest CRA initiative with respect to the Disability Tax Credit.  Apparently, people who have been able to claim the credit for years (decades) are now having problems (note the appearance of the word “autism” in the first line of the article.

    I remember in the past that the Auditor General would occasionally conduct audits of Revenue Canada and report that there were billions of uncollected taxes payable. Of course, the Minister would always  try to shore up the perceived integrity of the tax system by using the standard “deny it” response.  However, while the government now drowns in a growing deficit and starts to feel the next election’s soundtrack starting to take shape, the tax collectors are now reinvigorating their “guilty until proven innocent” approach to tax collection and intensifying their squeezing of the sponge by focusing on the most vulnerable…the “mentally disabled”.  Here’s a question: who, in this context, is the real “mentally disabled” person?

    Personal confession here: my first job in the government was at Revenue Canada where, in December 1990, on the eve of the implementation of the GST, I started working at the only place that was hiring in Ottawa at the time.  I was a Rev Can “policy person” for two years before I managed to orchestrate my escape to another department.  While working at Revenue Canada I experienced something that I never felt at any other time in my life: the desire to ignore (or destroy) my alarm clock in the morning, as it was the only place which I felt I did not want to go and cringed every time I thought about it (regrettably, the need to earn some funds to pay the bills took precedence).  These type of articles suggest to me that not much has changed in the atmosphere, culture or approach to tax law interpretation and collection practice of the place.

    http://ottawacitizen.com/news/purported-cra-clampdown-leaves-mentally-disabled-increasingly-restricted-from-key-government-tax-credit/wcm/e64cc0ae-5a31-4a9c-848a-754427234fed
    <h1 class=”entry-title”>Purported CRA clampdown leaves mentally disabled increasingly restricted from key tax credit</h1>

    Sources say that some lifelong sufferers of mental disabilities have been cut off from the disability tax credit after having received the credit for decades

    OTTAWA — Sufferers of autism, bipolar disorder, schizophrenia and other mental health issues are the latest victims of a clampdown on access to the disability tax credit by the Canada Revenue Agency, according to several accountants, mental health associations and other advocacy groups.

    Sources told the National Post that some lifelong sufferers of mental disabilities have been cut off from the disability tax credit, or DTC, in the past two or three years after having received the credit for decades.

    The statements come after an uproar in Ottawa earlier this week over restricted access to the DTC for sufferers of diabetes, which caused a firestorm of accusations toward the Trudeau Liberals from the opposition NDP and Conservatives. The Liberals have in recent months faced widespread criticism over proposed tax changes directed at private corporations.

    Advocates say similarly restricted access to the DTC has occurred for mentally disabled people, largely due to a change in the language used to determine whether they are adequately disabled to be eligible for the tax credit. That has led to a higher number of people appealing rejections for DTC funding, advocates and tax consultants say.

    “What the CRA has done is set that bar so high that it is almost impossible for people to apply,” said Lembi Buchanan, head of the Disability Tax Fairness Campaign.

    Buchanan represents several severely disabled people who have recently been denied access to the credit. One such person, a woman with bipolar disorder who Buchanan declined to name, had been receiving funding under the DTC for 23 years before being cut off in 2015, she says. Another person, an autistic male who had been receiving DTC funding for 27 years, was cut off in 2016.

    Buchanan recently began representing mentally disabled people who have lost eligibility for the tax credit, and has taken several cases to The Tax Court of Canada.

    The revenue ministry acknowledged that there has been criticism about access to the DTC for mental health patients, but could not verify whether it was a systemic problem. Anecdotal complaints around restricted access to the DTC have been ongoing for some time, but the public does not have access to the number of people denied or forced to reapply through the CRA.

    “This is a long-running issue,” said John Power, the press secretary to Revenue Minister Diane Lebouthillier, in a phone interview Thursday.

    Power said that the ministry has taken steps to make easier access to the DTC, particularly by making application forms shorter. Both the number of people accessing the credit and the total money put toward the DTC have been steadily growing, he said. The office could not confirm whether access for mentally disabled people specifically has also been growing.

    The CRA did not respond before publication time.

    Critics say tougher access to the DTC is part of a tightening at the CRA, which, a number of tax consultants allege, has been forcing higher numbers of people into lengthy and sometimes expensive appeals processes in a bid to boost revenues.

    “This is a symptom of something that seems to be going on in the CRA which is trying to collect more money — and not just collect from people who owe it, but create more people who owe it,” said Peter Weissman of Cadesky Tax in Toronto.

    “What they’re doing, it seems, is trying to squeeze every last dollar out of the system without necessarily looking at who in fact is getting caught in the crossfire.”

    Weissman and Buchanan are both currently lobbying to reintroduce the Disability Advisory Committee, a body that used to monitor CRA’s access to tax credits for mentally and physically challenged people that was scrapped by the Harper government in 2006.

    The pair has asked to reinstate the DAC through letters to the Department of Finance. The department said in response in a June 02, 2016 letter that it was “seriously considering” comments from Canadians about improving CRA access to tax credits, but hasn’t yet brought back the committee.

    Observers say part of the trouble for mentally disabled people is that their DTC eligibility often expires without the person’s knowledge, usually without a notice letter warning them to reapply. After reapplication, many are denied and then forced to appeal the CRA decision.

    The number of people going into appeals has increased a lot,” said Ella Huang, the executive director of the Richmond Centre for Disability in B.C.

    Huang said the number of people being rejected for DTC funding has risen from roughly one in 10 to something closer to five in 10, though she stressed that it was difficult to put hard numbers on the levels of reapplications and rejections. The Richmond Centre assists disabled people in applying for tax credits like the DTC.

    Observers say that people who are deemed ineligible for the DTC also lose access to the registered disability savings plan (RDSP), a program introduced by former finance minster Jim Flaherty in 2008.

    Losing access to the plan means that recipients of the DTC often have to pay back government grants and bonds that were awarded when they were deemed eligible for the credit.

    Tim Ames, the executive director of Vancouver-based Planned Lifetime Advocacy Network, said one family was forced to pay back as much as $15,000 in bonds and government grants after the death of their autistic son.

    “It’s a very stressful thing for families to have to go through,” Ames said.

    PLAN supports about 65 families with mentally disabled members, and helps roughly 500 mentally disabled people every year apply for the DTC through its hotline.

    Ames said the CRA has issued an increasingly high number of “secondary assessment forms” to ask receivers of DTC funding to resubmit their credentials for the credit, but said there appears to be little consistency in which recipients are asked to reapply.

    “It seems to be very arbitrary, there doesn’t seem to be a system behind it.”

     

Viewing 10 replies - 11 through 20 (of 1,792 total)

You must be logged in to reply to this topic.