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  • #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 - 1,701 through 1,710 (of 1,792 total)
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  • #2571

    Sabrina Freeman
    Participant

    Paul Thibideau, a hard working autism lobbyist in Ottawa, is organizing a nationwide letter writing campaign. Here is a letter he wanted us to share with members of this e-mail list, many of whom are in provinces across Canada. He has also included contact information for all Members of Parliament that we have made available at http://featbc.org/MPs.html

    Sabrina

    **************[P. Thibideau Letter}**************
    This is to share with you my summary of comments received in response to my recent e-mail (to different groups) about a letter writing campaign. This is also to thank those who sent me their comments and suggestions.

    1)- First, WE NEED TO EDUCATE THE POLITICIANS ABOUT AUTISM AND GET THEIR ATTENTION. This means that, at least 1000 letters from coast to coast will be needed. This could easily be achieved if, for instance, each family, friends and relatives of the few thousand Canadian children with autism wrote one letter and sent it to at least 10 politicians, e.g. ONLY ONE PERSONAL LETTER BY EACH WRITER TO AS MANY DIFFERENT POLITICIANS AS POSSIBLE IS ALL THAT IS NECESSARY. Politicians are quite sensitive when they receive letters about a specific situation from a number of correspondents (whether they are from their constituents or not).

    This time, if we fail due to a lack of interest or efforts by every one of us, this issue likely will not be resolved for at least another 10 or 20 years – then, it will be too late for most of our children and us.

    So, LET'S ALL GET ON THE BANDWAGON AND FLOOD THE FEDERAL AND PROVINCIAL POLITICIANS' OFFICES WITH LETTERS.

    2)- Much pressure needs to be exerted at the Federal and Provincial levels in each of your respective areas. In addition, as suggested by Western correspondents, some of your letters should also be addressed to Ontario politicians, since a greater input from these politicians will be necessary if a satisfactory resolution of this situation is ever to be achieved.

    3)- Letters reflecting your personal experience, with or without quotations and references from my earlier e-mail, (provided they are no longer than a page or two) will normally produce better results than a form letter sent by a larger number of people. Be firm, specific and indicate that you expect a response and action. If after a month or so, you did not receive any answer, follow up with another letter.

    4)- IT IS IMPORTANT TO REACH AS MANY POLITICIANS AS POSSIBLE FROM ALL PARTIES, since for many of them, partisanship seems to prevail over human concerns.. You can form small groups. Each person selecting a number of politicians to write to from the list (list of all Federal M.P. and Ontario M.P.P. to follow), thus covering more ground and less duplication, Worth mentioning,.. in the province of Quebec, the concerns from some 70 families were sent to all provincial politicians.

    5)- In order to add extra weight to your letters, try to form small groups of parents, friends and/or family and REQUEST A FACE TO FACE MEETING with your local Federal and Provincial representatives.

    6)- It is important for the politicians to realize that WE ARE UNITED, FRUSTRATED WITH THE CURRENT SITUATION AND WE REPRESENT A SUBSTANTIAL NUMBER OF VOTERS AND TAX-PAYERS.

    Please note all letters m,ust go out as soon as possible. The flow of letters should be maintained for a few weeks, thus producing a greater impact on those who must resolve this long-overdue dilemma.

    7)- Any MEDIA COVERAGE in your own area would be a plus.

    The annual general meeting of the Ottawa Chapter, Autism Society Ontario, is scheduled for Tuesday, April 24,2001. The media and members of the general public are invited to attend.

    Paul L. T.

    Ei415@ncf.ca

    P.S.:- If you did not receive my (mid-March) first e-mail or you lost it, let me know and I will gladly send you another one.

    WE NEED TO WORK TOGETHER

    IF WE ARE TO SUCCEED.

    LET'S ALL DO OUR SHARE.

    #2570

    Deleted User
    Member

    Hi Everyone,
    This is Franca from Victoria.
    I also attended the Video-Conference last week and was glad to hear your input, Barbara. I was lined up to ask a question on specific qualifications needed for staff setting up and maintaining an autism treatment center (one of the pilot programs is right here at Queen Alexandra Hospital.) However, the so called forum conference ended up being more of a lecture with very little time for discussion. So the facilitator promised to forward my question to Dr. Guralnick; however, I haven't received an answer yet.

    Also last week I attended a meeting re: Child Services Equality Act. All MLAs froom the island were invited, but only one MLA (Liberal) showed up. As usual I found myself feeling very frustrated by the overwhelming power of burocracy. Representatives from Queen Alexandra Hospital, CRD, Victoria Association for Community Living were there talking about their recently implemented community research commitees. What else is new! I let the group know how I felt about more research committees and the other parents cheered me on.

    Thanks for the good work everyone!

    Franca

    #2569

    Sabrina Freeman
    Participant

    I'd like to respond to Barb’s post regarding the Guralnick video-conference organized by MCF. I'm very happy to hear we had high quality FEAT representation at the video conference, with several members in attendance.

    I have much respect for the outstanding New York Department of Health autism report edited by Dr. Guralnick and was glad to hear he delivered the message regarding what constitutes REAL best practices for the treatment of autism. I'm sure there were a few government MCF policy folks that were less than thrilled with his comments (the uncomfortable truth).

    In terms of getting government to go with a province-wide Guralnick video conference on
    autism, that would be great. Unfortunately, I think it may not happen until a new government is in charge — it might be a hard sell with the current government since they are somewhat miffed that autism parents who are demanding genuine best practice won't get back into line.

    Barb, it's a great initiative. Keep us posted.

    Sabrina (Miki’s Mom)

    #2568

    Hi Everyone,

    I attended the Dr. Guralnick video-conference at the Courtenay site yesterday. His presentation was on setting up a Delivery Model to ensure effective early intervention within a jurisdiction. Dr. Guralnick was personable, straight forward and knowledgeable. His model is academic, seemingly well researched and comprehensive. While it focussed on all children at risk, he referred to autism throughout and, I believe, his messages were congruent with those FEAT would give – early diagnosis, programs based on best practice / research, individualized services, current and accurate information for families, essential support of families to address the family stressors that are engaged when a child has special needs etc. Sabrina, many of his comments could have been scripted by you. Too bad his energies could not have been focussed on autism and the current state of affairs in our province. As it is, each site was asked to respond to his model with ideas of what they were ready to do and could do "at this time" to advance such a model in their communities. The discussion at our site demonstrated the sense of powerlessness folks involved feel with respect to making any changes in coordinated services. The "not enough dollars" / "not enough people" manatra reigns.

    The video conference enrolled 682 people at 21 sites and provided for questions to Dr. Guralnick throughout. While it was not appropriate to ask questions specific to autism during the presentation, I did manage to make a comment during the "early diagnosis" component. I expressed our discouragement / dismay at the dismal diagnosis experiences for families with autistic children. I told him that our organization had distributed copies of the CHAT to all GPs and Pediatricians in the province and that it could be used to identify children as early as 18 months. He concurred and made comment that waiting until children at 3 or 4 is much too late. Later in the presentation, a pediatrician who identified herself as, I believe, head of pediatrics at Children's returned to my comments and expressed interest and gratitude for that kind of information sharing and well as a similar sense of urgency in diagnosing and providing adequate treatment services to children with autism.

    THere were many references to forthcoming increased funding for early intervention and to an advisory committee that had suggested and organized the video conference. Should we as a group be suggesting a province-wide video conference (also partially funded by health and education ministries)on autism? Perhaps Dr. Guralnick could get specific in his model to early intervention for our kids? Food for thought?

    Barbara McLeod

    #2567

    Deleted User
    Member

    I too have one to add about the government's answer to ABA. A worker from the Infant and Child Development office contacted me about 10 days ago to inform me that the government now had this "program that offered intensive treatment". She said that our child "might" qualify for it, but the "ICD office didn't have all the information". I asked her exactly what it was called and what information they did have – I also asked her in the same sentence if the common name was PCARD. She admitted that she didn't know the name of the program, all they gave her was a pamphlet with a very vague description – infact as she was reading the name of the program to me – I pointed out to her that the initials equaled P C A R D! I then informed her what was happening, what the government was trying to pass off as their answer to intensive behavioural intervention! I encouraged her to contact FEAT for more details and to further educate herself, as she said that she had an obligation to present this to other families. I said that it would be in her best interest to get the facts, so that she could at least answer some of the questions that she would encounter. It is sad that this young person was only trying to do her job, and the government that she works for is keeping her in the dark feeding information on a "need to know" basis (barely) and gettiing her to do their snow job! Your right!!! it does sound like a good story for invesigative reporting.

    #2566

    Deleted User
    Member

    Just a little update on the PCARD thing:

    After reading the message Julie forwarded to us about the PCARD system I thought I'd make a few calls and see if I could speak to someone about this program that SUPPOSEDLY exists. I called enquiry BC… they had no idea what I was talking about. suprise surprise.

    I was then forwarded to mcf, put on hold and then transferred to a voice mail box.

    Before trying this route, I tried my social worker, thinking that she would at least know how one signs up for the program.

    When I asked about the PCARD program she at first had no idea as to what I was referring to. I then explained the initiative, she then informed me that the gov't had not given them any information on it. She promised to ask around for me and did promptly get back to me. apparently nobody seems to know much of what it is or how it works. THe government has told them (her office at least) very little. She did hear that it hadn't passed cabinet yet and that it was a joint venture with Ministry of health and that was it. She also thought you were supposed to go through sunny hill to get in.

    Ahhh, another hoop.

    To be honest, I know the PCARD program is not true ABA and I don't intend to sign up for it, HOWEVER, my point is

    HOW CAN YOU TELL THE PUBLIC THAT A NEW PROGRAM EXISTS WHEN CLEARLY IT DOES NOT?!

    was this not the same program they so proudly claimed was in existence last year during the court case? why is is still not up and running? why does nobody know anything about it? how does one get their child into the program?

    It seems to me that the answer is simple. PCARD doesn't actually exist. It is truly a farce. a trick of smoke and mirrors. Sounds like a good television expose to me… perhaps an election bombshell

    #2565

    FEAT BC Admin
    Keymaster

    RE: the BC Children’s Commission
    FROM: FEAT of BC
    TO: FEAT BC members
    _________________________________________________________________

    FEAT BC Directors Jean Lewis and Sabrina Freeman, made formal presentation to the BC Children’s Commission in Vancouver on Friday 03/09/01. The full Commission was in attendance, including Commissioner Paul Pallen.

    The presentation described the current situation for children with autism in BC and also included a 45 minute video-tape from the Lovaas Institute which stresses the importance of effective, science based autism treatment. The presentation discussed the inadequacy of BC Government services for children with autism and the serious difficulty BC children have in getting effective autism treatment in a universally accessible manner.

    The presentation was well received by the Children’s Commission. Families who are currently not able to access medically necessary autism treatment through the Ministry for Children and Families, may want to consider their options regarding filing a complaint with the Children’s Commission against the Ministry for Children and Families.

    You may have grounds for a BC Children’s Commission enquiry if your child’s situation is as follows:

    – your child is diagnosed with autism or autism spectrum disorder from a BC psychologist, psychiatrist or pediatrician

    – your child’s physician or psychologist has prescribed a Lovaas-type ABA treatment program

    – you cannot afford to privately provide the prescribed autism treatment yourself

    – Ministry for Children and Families has refused to provide necessary funding for the prescribed treatment

    – your child is unable to get into the government P-CARD autism program

    – your child’s physician is of the opinion that lack of a medically necessary autism treatment program will harm your child’s health and well being.

    BC Children’s Commission contact information:

    Telephone Toll-free
    1-800-859-1441

    Telephone in Victoria
    (250) 356-0831

    Fax
    (250) 356-0837

    Post
    Children's Commission
    PO Box 9207, Stn Prov Govt
    Victoria, British Columbia
    CANADA V8W 9J1

    Web
    http://www.childservices.gov.bc.ca/

    Role of the Children’s Commission:

    – to monitor the effectiveness of services for children and youth
    – to make recommendations for change
    – to ensure that necessary changes are made
    – to ensure that children and youth are respected and treated fairly,
    that they have access to the services they need and that these
    services are responsive to their needs

    #2564

    Julie Ng
    Participant

    I just received this info and thought this might be interesting for everyone.

    Joe

    ————————————————–

    March 7, 2001

    Dear Community Group Facilitator:

    This week representatives from the Ministry of Children and Families presented to the Board of ASBC on the subject of MCF’s Initiative on their Early Intervention Program. They provided a basic outline of the Program explaining that they are somewhat limited in the amount of detail they can provide because they are currently in litigation regarding this program.

    I would like to share with you this information so you, in turn, will have some information you can share asking in your community. I’m sure people are you what is happening in response to the Auton case and the court order that an ABA program must be made available for children on the autism spectrum who are 6 years and under. I hope that the information that follows can help in someway to help keep our members and others up to date on this issue.

    The name of the Program is currently PCARD, The Provincial Centre for Autism and Related Disorders. Note that this is not likely to be the permanent name nor will there be a specific physical location for the Program. This is a Program that will eventually be operating throughout the province in every community where there is a child 6 years and under with an autism spectrum disorder.

    The Provincial Centre will have four different but coordinated functions including:
    1. Diagnosis and Assessment
    2. Intervention
    3. Training
    4. Research and Evaluation
    Included in the Program, of course, will be a community based ABA program.

    The current plan is to have a Provincial Coordinator who will be contracted to provide expert leadership. This person will not be a MCF employee rather he/she will be an external person with fewer constraints on him/her since he/she will be outside government. There will be four consultants, each responsible for one of the four functions as listed above. At the same time that this Provincial Centre is being developed MCF will be developing parallel structures regionally to build community capacity to provide the program locally.

    The first phase of the Program is underway now. Last summer a Request for Proposals (RFP) was circulated to service providers and a selection process was undertaken. A panel was involved in reviewing the proposals from the applicant organizations. Panel members included: Dr. Jill Calder, member of the Ministry of Health’s Expert Panel on Autism and ASBC Board Member, Dr. Pat Mirenda, UBC Professor of Special Education, Deborah Pugh, Executive Director of ASBC. This group met with proponents and was extremely vigilant in the selection process to ensure that the focus was on getting the best program for

    children and families. From the original 11 applicants three contracts were awarded. Negotiations with the selected proponents are now complete and the successful organizations were announced. The organizations and locations are as follows:

    § Thompson Okanagan – four child development centres have joined forces to provide a program that serves Kelowna, Penticton, Vernon and Kamloops

    § Delta Association for Child Development – serving Vancouver, Surrey and Delta

    § Queen Alexandria – serving the Greater Victoria area

    These three programs will serve 75 to 100 children six years and under and will begin in the near future. We were not given information as to how families living in these communities can access the programs. I would suggest parents make a phone call to Enquiry BC at 660-2421 in Vancouver or 1-800-663-7867 outside the Lower Mainland and ask to speak a contact person regarding PCARD. This person should be able to provide the necessary information.

    The next round of Requests for Proposals will be issued in April 2001. The RFPs will be shared on the Public Service Commission website. This second RFPs will be adapted to address new information that MCF has regarding this process and best practices and another selection process will be undertaken. Once that process is completed service will be made available to another group of children and families.

    The program will be a year-round intensive intervention for children and their families. It will be a minimum of 20 hrs. per week and will consist of highly supportive structured teaching using a variety of strategies. It will be 1-1, planned and individualized. A multi-disciplinary team will be involved and will include speech and language pathologists. The program will involve integration with typical peers of the same age. It will have a functional, proactive, positive approach. The plan will be reviewed overtime to determine its ongoing appropriateness. A baseline will be established with ongoing monitoring and review of outcomes. The family will be an integral part of the team.

    Professionals involved will be highly trained. Expertise in Applied Behavioural Analysis will be imported from the U.S. and Alberta as well as relying on domestic autism specialists.

    The program format will be three-tiered similar to the Promising Practices. There will be core training on positive behavioural support and specific research and evaluation criteria. Both the child’s individual program and the service provider’s provision of service will be evaluated on an on-going basis.

    A child will have a maximum three-year involvement and the transition in and out of the program will be dependent on evaluation by a multi-disciplinary team. If a child is over 4 years at diagnosis there could be a delay in entrance into kindergarten.

    Assessment and diagnosis will happen at the regional level. There will be more than one or two teams to diagnose in the province and then refer to MCF for treatment. The Ministry of Health wants to build a regional capacity for diagnosis and assessment.

    PCARD will have an advisory committee and ASBC will be one of the groups on that committee.

    The MCF personnel at the meeting emphasized strongly that existing MCF programs available to children over age 6 and their families will not be siphoned off to support PCARD. The money for PCARD is new money. They indicated that there is a commitment to review the current system of behavioural support and this process will happen concurrent to the development of PCARD. We can reassure families with children over age 6 the current support they receive will not be compromised to support PCARD.

    I hope that this basic overview of PCARD is helpful. As I am sure you are aware, having read this, there are many questions to be answered yet. ASBC is cautiously optimistic that this program will be a positive one for children 6 and under and their families. We will make every effort to keep you informed as we are given more information by government and we will continue in our role to advocate for the provision of appropriate treatment for all people with spectrum disorders regardless of their age.

    Best wishes.

    Clair Schuman
    Program Director

    #2563

    Hi Everyone

    Just a correction to the date in Sabrina's message re: the video conference. It is actually happening on March 15. The 9th is the registration deadline.

    Do we have the strength to attend!!

    Barbara

    #2562

    Sabrina Freeman
    Participant

    Hi again.

    I just received an invitation some members of the discussion board may find interesting.

    Apparently our government has hired a very big name to make it appear as though they are actually concerned with early intervention for special needs children. The editor of the groundbreaking New York Report on Best Practices for Children with Autism, Dr. Michael Guralnick, is now, ironically, working with the same government players (MCF) who tenaciously worked through government lawyers to trash the New York Report in B.C. Supreme Court. Your children’s ministry is now spending more of your tax dollars to put the editor of the N.Y. Autism Report on a province-wide, pre-election, video conference on early intervention. We can now rest assured with the knowledge that children are this government’s HIGHEST priority ;-)

    Anyway, the government has organized a “Free Video-Conference Education Forum: A Community-Based Prevention and Early Intervention System for Young Children with, or at Risk for Developing, Special Needs”, on March 9th from 12:30 – 4:30 PM at the following 20 towns in B.C. :

    – Courtney, Chilliwack, Cranbrook, Duncan, Fort Nelson, Fort St. John, Houston, Kamloops, Kelowna, Kitimat, Nelson, Port Alberni, Port Hardy, Prince George, Prince Rupert, Williams Lake, Powell River, Vancouver, Vernon, Victoria.

    I’m not sure how much of Dr. Guralnick’s address will relate to autism, but it should be interesting to hear what he will say about autism in front of the Ministry that has hired him to speak.

    If you would like an e-mail invitation to this video conference, you can contact
    Marie.Schultz@gems5.gov.bc.ca or give FEATBC a call (or mailto:admin@featbc.org) and we’ll fax you the registration form.

    Anyone planning on going, please contact FEAT BC if you would like to volunteer to give us your notes.

    Sabrina (Miki’s mom).

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