• 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 - 1,801 through 1,810 (of 2,008 total)
  • Author
    Replies
  • #2844
    Barbara Rodrigues
    Participant

    Hello:

    Regarding the Province story. Thank you again to Linda Cucek for her efforts to keep her son's story in the public eye. Anyway, I think you guys make a great point about the need for clarity in the article. How about a ton of letters to the editor of the Province? Keeps the story out there also.

    Email provletters@pacpress.southam.ca

    Just a thought.

    Barbara
    Jeremy's Mom

    #2843
    Sandy & Mike
    Member

    Our son is under 7 and I would like to know "where the money for this treatment is" that the Province talks about?? Is there something that we and hundreds of other families with children under 7 are missing? Has anyone set the record straight?

    #2842
    Deleted User
    Member

    In regards to the recent Province article:
    24 000 special needs children are receiving treatment?
    For What? And what treatment?
    Is anyone contacting them to clear up this misinformation?

    #2841
    FEAT BC Admin
    Keymaster

    In the Vancouver Province today, please visit
    https://featbc.org/downloads/province_02_07_02.pdf

    #2840
    Linda Cucek
    Member

    Make sure you pick up the Province paper tommorrow.

    Gordon Campbell, Christy Clark, James Cucek and moms pic will be in the paper–regarding broken promises regarding autism.

    Linda Cucek James mom

    #2839
    Deleted User
    Member

    Check tommorrows Province paper their will be a story regarding Autism.

    #2838
    Isaac
    Participant

    In the Toronto Star today …

    Isaac (Miki*s Dad)

    *******************************************

    Parents demand improved services for autistic children
    Families frustrated as long waiting lists plague $39 million Ontario program
    Patricia Orwen, Social Policy Reporter

    Little Nadia's forehead is covered in bumps and bruises. And they weren't inflicted accidentally.

    Like many children who suffer from a neurological disorder known as autism, the 2-year-old Toronto toddler has no way to communicate. She repeatedly bangs her head against the wall in frustration.

    Two years ago, the province allotted $19 million for treatment to help children like Nadia improve their speech and social skills. Last spring, it more than doubled that amount to $39 million. Today, Nadia's family is among many wondering why, with all that money, the waiting list for treatment in Toronto can be several years long, and when the child reaches age 6, that funding is abruptly cut off.

    "I've been told she's number 580 on a list of 600 and two years is a typical wait," says Nadia's mother, Marianna Ofner-Agostini.

    "That's time we just can't afford to take…. We'll just have to remortgage our house to pay for it ourselves … it's senseless and frustrating."

    Ofner-Agostini and others are demanding that Ontario's Intensive Early Intervention Program for Children with Autism provide faster service and continue that service beyond age 6.

    Autism is a neurological disorder that affects several thousand children in Ontario. Autistic children typically have difficulty with speech and are often unable to learn even simple tasks.

    The therapy in use in Ontario is known as applied behaviour analysis. Pioneered in the United States by Dr. Ivar Lovaas more than 30 years ago, it involves intensive sessions in which a therapist repeatedly reinforces appropriate behaviour, language and social skill with the child. Autistic children generally need two or three years of such therapy, which costs between $45,000 and $80,000 a year.

    Clovis and Sherron Grant filed a complaint with Ontario's ombudsman last week after being told that they could not expect to get treatment for their 5-year-old son Isaiah because their service provider, the Toronto Preschool Autism Service, told them that it can't get any money from the government. Isaiah has spent 13 months on the waiting list. His parents say they were told he is number 339 of 600.

    "We have lost hope for our child receiving the early intervention that has been talked about so many times by your government … we feel deceived and let down by your department," the Scarborough couple wrote in a recent letter to John Baird, the minister of community and social services.

    Last Thursday, Norrah Whitney, who is the mother of a 6-year-old autistic boy, filed a written request with provincial auditor Erik Peters to audit the autism program to determine whether the taxpayer's money is being spent wisely. Whitney also filed a similar request with the ombudsman.

    Whitney has already filed a complaint of discrimination on her son's behalf with the Ontario Human Rights Commission. In her complaint, Whitney states that the government has violated her son's rights by failing to provide him with a medically necessary treatment.

    When he was 5, Whitney's son, Luke Burrows, was given 30 hours a week of intensive one-on-one behaviour therapy under the government-funded program. He learned words, then phrases. And he began feeling comfortable socializing. Now that he is 6, however, that funding will not continue.

    "He's not ready to go to school," says Whitney, a single mother who works part-time.

    "He needs to keep up this treatment in order to develop his speech and social skills."

    In an interview with The Star, Baird said that Ontario is doing more than any government in Canada for autistic children.

    "I don't pretend that we are going to be able to meet every need, but we've gone from spending nothing three years ago to $19 million two years ago and then we doubled that funding … I can't think of any other program where we doubled funding in one year," Baird said, adding that he knew of only 55 children waiting for treatment in Toronto.

    Ofner-Agostini, however, says this kind of thinking is shortsighted.

    "If Nadia receives treatment before the age of 5, for a period of one to two years, she has a high probability of living a normal life. By spending now, the government is saving millions of dollars in the future. If these children are not treated now, they will need aides when they enter school and they may have to be placed in group homes or institutions later."

    *******************************************

    #2837

    Hi Lisa,

    The government has put out an RFP – Request for Proposal – for an organization to manage / administer an Individualized Funding model to serve children with autism under six. It went up on the MCF web site on Monday. The news broadcast that talked about it said they hope to have it up and running by June. What I heard was that it is for $5,000,000 and is intended to serve 200 children. Hmmmm. Is it the funding you've been waiting for? It appears to be another sum of money being made available to some families.

    Barbara McLeod

    #2836
    Deleted User
    Member

    I heard on the radio today that the early intervention funding for autistic kids went through today in BC. Did anyone else hear this? Is this the individualized funding that I have been waiting for? Any confirmation or information would be muchly appreciated.

    Lisa Luoma
    Nathan's mom

    #2835
    Isaac
    Participant

    Hello everyone,

    There*s a radio news clip at the CKNW web site that may be of interest to parents on the FEAT BC list (requires RealAudio player; to listen, please click here …
    http://209.115.161.208/cgi/vaultfile.cgi?4-10)

    Although the story is a bit off topic for our discussion group, it*s noteworthy because it spotlights the hopelessly flawed, government special needs ‘system’ we are working so hard to keep our children out of.

    Please be advised the CKNW clip may be upsetting to some; it*s about a BC mom who welcomes her son home from the government approved respite worker, only to learn he*s come home with a broken leg. The Children*s Ministry abruptly *closed the file* on the six year old boy, without explanation.

    The story can be heard at this address: http://209.115.161.208/cgi/vaultfile.cgi?4-10

    – Please move the RealAudio slider bar to 34:29 minutes into the clip

    – The interview ends at 51:44 minutes

    Isaac
    (Miki*s Dad)

    [NOTE: CKNW has the clip available until Thursday, January 25, 2002]

Viewing 10 replies - 1,801 through 1,810 (of 2,008 total)
  • You must be logged in to reply to this topic.