[FEAT BC Admin]

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.

Topic

[Janet Toye]

Hi,

Has any one had problems with the Vancouver Supported Child Development people? My son was on the waitlist to get support from VSCD and his name finally reached the top. He has been receiving support in a daycare since September but we have been told that his support will be cut off at the end of March. In October we received a call from a consultant telling us that my son is making so much progress he doesn't need any more support. I challenged her based on the progress on his goals and the support continued. I told them as well that if they pulled his support then they should give back the money that they received from the school board. My son was a December baby so we decided to hold him back from kindergarten for a year. Being the youngest child in the class and having autism as well is not a receipe for success. When we received notice that our son's support would be cut off at the end of March, I argued that he deserves support because of his position on the waitlist. The coordinator told us that his name was mistakenly taken off the waitlist and apologized to us. She refused to place his name back in the original position but assured us that they would try to not make that mistake with any other family. We went above her and her superior told us today that the decision will not be changed. I asked her why and she said, "I just can't." Does anyone know a good lawyer who is familiar with the VSCD or Centre for Ability policies. Any advice is appreciated.
Oh yeah, this is our experience with the VSCD.

[Nancy Walton]

Hi Barbara,

There are representatives from featbc, ASBC and the ABA Support Network all working to reclaim direct funding. It would really help if feat members contacted their MLA

http://www.leg.bc.ca/mla/3-1-7.htm

and get them to ask Mary Polak to reverse the decision. Perhaps if 30 MLA's go to Mary Polak, she will get the message.

Nancy

[Joanna Ng]

Barbara, your message came in a timely manner because I've just mailed out my agreements.

Like you said, I wouldn't touch on why the mass is punished for a few…because for the past year, the 'whys' have killed a lot of my cells. Just imagine who would vote for the HST. Aren't the citizens of Canada clear enough but look at our [pathetic, blood-sucking] government. HST is coming to every home in July, be it you are rich or poor. So, this is not a so democratic country after all, but certainly not the worst.

You are so right that the MCFD does want to take full control of the funding. However, I care more about when it's all invoice payment, how many more staffs will be employed to do a stinking job whereas the $$$ can be more fully utilized in helping more individuals on the spectrum.

I believe every $ spent on these wasted effort can be channeled into more humane and wise way.

Just look at The BC Centre for Ability. It has a hell long waiting list of clients….but they say they have no $$$, blah-blah-blah.

MCFD says [no guarantee] that they will issue the payment within 30 days to our service providers. The latter claim it depends on the staff who's working on it. So, wish us all the best of luck.

That being said, I wouldn't worry much about that monthly funding because it's only half of what I'm spending. So, for me, I will pay my BIs through my own pocket because they are students and have my other more professional service providers go through the bureaucrats [hell, hope they won't curse me for saying this].

Finally, take it easy, parents. Nothing is worse than knowing the diagnosis of our beloved ones and live with it[I mean the diagnosis]. Cheers.

[Barbara Rodrigues]

Hello everyone:

I was just wondering what (if any) response anyone has had concerning the loss of direct autism funding? My concerns were answered with the fact that there a some (probably a minor few) that were misusing funds – I won't get into the hows/whats but that was the one answer – (although nothing in writing to that effect). Why the rest of us are being punished for the actions of a few is beyond me but my guess is MCFD has wanted to 'take away' direct funding for a long time and now have a few valid reasons to.

My other question is for those who have been switched to direct funding – how long is it taking for your staff to get paid? Is it timely? How are you able to hire staff who will only get paid every 6 weeks????

Thanks in advance.

Barbara

[Dione Costanzo]

Hi everyone,

Here is a message that is circulating via email from a Coquitlam parent who is looking for support at a School Board meeting on Feb. 23:

Friends, Family, Special Interest Groups and Supporters: Please forward this email to anyone else you think may benefit from reading it or be affected by it.

Dear parents, my name is Jana and I am the mother of an 8 year old son with Down Syndrome. I am writing this email with the hope you will take a few minutes to read it over, and join me in my effort to effect change in how School District #43 and the Union assign SEA’s(special education assistants) to our children. I have discovered over the past 4 years the process can be very disruptive and have a negative impact on our children, as well as the other children and teacher in that classroom.

Last year my son, Reid, had a total of 9 SEA’s in a 4 month period. This situation led me to wonder what kind of system or structure was in place that could lead to this happening. After speaking with Reid’s teachers, many SEA’s, a variety of administrators and other parents of children with special needs, I felt I needed to pursue the matter further to get the answers I was looking for.

I have spent the past few months trying to figure out and understand the process of placing an SEA with a child and have come to the conclusion there are some definite problems with the current system. After speaking with the Superintendant and Assistant Superintendant of SD 43, the Director of Student Services, two School Board Trustees, the President of the Coquitlam Teachers Association, the President of CUPE(the union that services the SEA’S), the Editor of the Tri-City News and speaking at the District Advisory Group last month, I now feel I must speak publicly at a School Board Meeting.

THIS IS WHERE I COULD USE YOUR SUPPORT. As the editor of the newspaper said “strength in numbers”. I know if I go to the Board meeting alone they will listen politely and maybe ask a few questions. BUT, if I show up at the meeting with 50 supporters standing behind me, they will be forced to pay attention. The CUPE contract is being re-negotiated this spring and my hope is that both sides(the School Board and the Union) listen to my 3 main concerns and have some real discussion around it, instead of just accepting the contract as it is currently exists.

I have asked to speak at the Tuesday February 23rd School Board Meeting(7:30pm) but won’t have confirmation until the week prior. If any of you are able to come to this meeting with me and just stand there in support I WOULD GREATLY APPRECIATE IT. I only have five minutes to express my concerns, so your presence there would send a strong message.

I have attached the document I sent to the Board earlier this month outlining my three main concerns and some possible suggestions/solutions(at the request of the Board). I know you all have busy lives and to be honest taking up this cause requires a lot of time and energy I don’t necessarily have. If I don’t speak publicly now and advocate for my son and every other family in the tri-cities that has a child with special needs, I believe they may not receive the best possible support and education they deserve.

Please email me if you think you might be able to attend this meeting so I can start a list of supporters and send another email prior to the Board meeting to confirm the date and location. Thank you in advance.

Sincerely,

Jana Demelo

jjdemelo@telus.net

[Andrew Kavchak]

Hi Debra,
You are correct of course and it is inappropriate to generalize about a class of people based on the actions of some members of a particular group. It reminds me of an article I saw in a newspaper over a decade ago which summarized the findings of a study done by a group of psychologists in the U.K. It found that what the bulk of politicians had in common was an ability to lie to people without feeling any shame or emotional trouble. The article referred to policians as sociopaths or something. At the time I cut the article out and put it up on the wall in my office and it coloured my thinking of politicians since. Of course not all of them are mean. You are correct.

[Debra Antifaev]

I couldn't enjoy the last rant by Andrew as it began with a slur against ALL politicians and questioned the integrity of salespeople.
As a salesperson and parent of a child with autism, I have been lied to many times and treated poorly by:
social workers, teachers, Union reps, Union reps, Union reps, the head of CUPE, integration teachers, Supreme Court Judges and dozens of others…take your pick.
In fact, one of the only people who has treated me with respect and honesty was the guy who sold me my Honda.
Lets be careful where we go with the name-calling. There are a great many people who have stood against our desire for Medicare for Autism Now and they are not used car salesmen. I would be hard pressed to support someone who called me names.

[Andrew Kavchak]

Hi Folks,

Need a reminder about why politicians are considered to be a class of undesirables next to used car salesmen? Need a reminder about how out of touch these clowns are with the real world?

Take a look at the two statements below regarding James Delorey. The first is from the MP in James Delorey's riding. The statement does not even mention the word "autism"!

While the second statement in the Senate mentions that James Delorey had autism, it begins with a statement about how James Delorey ventured out into the woods "no doubt on the sort of adventure little boys enjoy". EXCUSE ME? Just another typical outting by a typical boy without any supervision where he could not be seen by anyone? EXCUSE ME? Senator, do you think his parents used to tell him to be back by supper time? Or maybe whenever he informed his parents that he was leaving on a typical daily adventure they asked him to give an estimate of his time of return? Talk about not knowing what he is talking about! Do these guys get paid for this?

Neither of these two statements ends with a call to action, or even a reminder of an opportunity with Bill S-210 and the Standing Committee on Health work on the Bill or the Subcommittee on Neurological Disorders that the Parliamentarians have to actually do something that may help raise awareness of the special needs of kids with autism and help prevent such a tragedy from happening again. Not one peep out of our "legislators" about what needs to be done (besides making your typical misinformed and misleading speech, that is).

The third and final statement that I copied below is a reminder of the federal government's commitment to “values”, “principles”, etc. and how the whole concept of "early childhood development" simply does not register on the government's radar screen. Hardly a surprise.
__________________________
House of Commons
Hansard
Wednesday, December 9, 2009

Statements by Members

James Delorey

Hon. Mark Eyking (Sydney—Victoria, Lib.):

Mr. Speaker, hope turned to tragedy yesterday when seven-year-old James Delorey of South Bar, Cape Breton, succumbed to hypothermia after a heroic rescue.

James wandered off into the woods with his dog Chance just before a major snowstorm. Hundreds of volunteers from across Nova Scotia went out to look for James. People from all over Cape Breton volunteered to help with the search. They provided food and they provided their prayers.

Search and rescue volunteers poured their hearts and souls into finding James and they found him. Police, fire and armed forces brought their expertise into the effort. Medical staff did their best to save James. These people did everything they could but, like so many other tragedies, it was not enough to keep James with us.

To his friends at Harbourside Elementary School and to his family, we in the House offer our condolences. God bless James.

________________________________

THE SENATE
Friday, December 11, 2009

The Late James Delorey

Hon. Michael L. MacDonald: Honourable senators, I rise today on a very sad note. Last Saturday, James Delorey, a 7-year-old boy from Cape Breton, wandered away from his family's home. He followed the family dog, Chance, out into the woods, no doubt on the sort of adventure little boys enjoy; but he did not come home that day. He was not dressed for the cold; no winter coat, no hat, no mittens. The first snowstorm of the season was on its way.

Hundreds of people in Cape Breton — the police, volunteer firefighters, the military, emergency services and ordinary citizens — mounted the most extraordinary search. Little James had autism and did not speak, so they knew that he would not respond to the calls of people searching for him. The searchers did everything they could. They played his favourite music and offered him pizza, his favourite food, anything they thought might reach him.

Two days later the dog returned home. By retracing the paw prints through the snow, searchers eventually found little James. He was almost frozen, but he was alive, against almost incredible odds. We can only imagine how James must have felt lost in the woods as the snow began to fall. As a father, my heart aches for his parents, Jason and Veronica, who lived the worst horror of all: Their little boy was lost and they could not protect him.

On Monday afternoon, the joy of finding him alive quickly turned to grief because, despite the best efforts of the surgeons, doctors and nurses, he succumbed to hypothermia on Tuesday morning and died at the IWK Health Centre children's hospital in Halifax.

Honourable senators, I want to pay tribute to the people of Cape Breton. I want to pay tribute to their compassion and their generosity. Nothing in life can prepare a person to lose a loved one, least of all a child. For a few days this week, James was everybody's little boy. God rest his soul and God bless his family.

________________________________

THE SENATE
Tuesday, December 15, 2009
SENATORS' STATEMENTS

Early Childhood Education

Hon. Art Eggleton: Honourable senators, I rise today to make a statement on the government's response to the Standing Senate Committee on Social Affairs, Science and Technology report, Early Childhood Education and Care: Next Steps, which was adopted by the Senate on June 22, 2009.

Honourable senators, I am disappointed that the government did not implement the recommendations in our report. The government does not want to appoint a minister of state for children and youth, even though we have a Minister of State for Seniors and even though it would send a clear signal that Canada understands the importance of young people to its future.

The government does not want to have a permanent national advisory council on children to draw on the best minds from across the country on how best to support parents and children.

The consultation process they cite in their letter happened over two years ago, and many from the early childhood education and care community tell me that consultations are no longer happening.

The government does not want to develop a pan-Canadian framework with the provinces and territories that would recognize and respect federal, provincial and territorial leadership as essential elements of developing early childhood education. Instead, they are content with the patchwork of provincial programs that exist today.

Instead of becoming a champion for the 21st century family, the government has essentially abdicated that role to others. This is disappointing because national leadership is crucial at this time. Now more than ever, our children need the right skills and knowledge to ensure that they will manage the many challenges they are facing in school, in society and in the workforce.

In addition, as our report pointed out overwhelmingly, scientific research shows that the early years are vital to this development because that period sets the foundation for confidence and skill development, which help children to become highly literate and mathematically competent later in life.

Honourable senators, based on the government's response, I am not sure that the government understands that early learning is about much more than simply the transferring of care giving responsibility from a parent to someone else. It is about shaping our future by investing in our children and by creating a system that will help every child succeed.

In those areas where the federal government has direct responsibility, such as for Aboriginal children, the response from the government is practically silent. Sadly, the record in this area continues to be discouraging. Incidents of behavioural challenges, as well as cognitive and language delays, are more prevalent in Aboriginal communities than in other Canadian communities, and could be aided by providing quality early childhood education and care.

In closing, honourable senators, as the Honourable Margaret McCain said before the committee, "The best single investment Canada can make for social justice and the optimal development of our children is to get them off to a good early start by building a high-quality evidence-based early childhood development system."

[Andrew Kavchak]

Hi Folks,

Below is an article that I submitted for the Autism Update column in the next issue of "Access Now", the disabled community newspaper in Ottawa.

David: I hear you. Sometimes I feel past angry. I even bought the "Anger Management for Dummies" book last month hoping that it will further help me to channel my emotions into some productive activity. Wrtiting this bimonthly column is one of those things…

______________________________
December 15, 2009.

Autism Update

By Andrew Kavchak

I have had the fortune of being able to write these “Autism Update” columns since Charles Matthews first invited me to submit an article in 2004. It has been a pleasure and a rewarding experience. However, this issue’s column is by far the hardest one I have had to write so far, and I hope I never feel the need to write one like it again.

On Sunday, December 6 I scanned the news websites and came across a story about a seven year old boy with autism who had gone missing in Nova Scotia. His family lived around Sydney. The little boy, James Delorey, was playing with his dog in the backyard of the family home. The home backed on to a wooded area. The dog and the boy took off in the woods and did not immediately come back. The boy only had a shirt and vest on. No coat, no hat, no gloves. The boy got lost. A winter storm came. That night, the lead item on the CBC National 10 pm television news was that there was a search going on in the area for the boy. It was clear that with dropping temperatures his life was in danger. The news story mentioned that the boy was autistic.

What does that mean? While a normal boy of that age would realize the danger of going too far from home, would realize when he is cold that he needs to get some more clothes or get indoors to be comfortable, would realize that he may be lost and seek to retrace his steps, would respond to searchers calling out his name by shouting back and heading in their direction, an autistic child is in another world. Kids with autism, particularly those who are severely affected, as my own eight year old son is, don’t quite have that appreciation of danger, or cold, extreme temperatures, and the need to dress appropriately. Kids with autism who are non-verbal cannot express themselves and yell back any meaningful signals to those calling their names.

The news stories showed a picture of James Delorey’s face. The picture struck me as that of a beautiful little boy. In fact, the picture reminded me of my own son, who was just a year older with slightly different colour hair. James Delorey’s picture touched a nerve with me and immediately struck me in the heart. I did not know this boy, but in a real sense, every parent of a child with autism across this country and around the world knew James Delorey very well. We know what challenges he, and his family, faced on a daily basis. We understood the severity of the situation. If I lived in Nova Scotia I would have joined the search teams in a flash. I could not stop thinking about this lost boy. I wanted so much to reach out and find him and give him a loving hug and tell him that we all loved him.

The news on Monday, December 7 was frightening. The first reports indicated that searchers had not yet found him. Then the reports indicated that the dog had returned to the home, but the boy was still missing. To all parents, this nightmare scenario was rapidly getting worse. Then news reports that day indicated that James Delorey had been found. While the initial feeling was one of relief, the articles were hiding something. What was his condition? It was not clear. One of the news reports that I saw stated that it was not clear if he was alive or dead.

In fact, the boy was still alive, but unconscious. His body temperature had fallen to a dangerously low level and he was suffering from severe hypothermia. The news reports indicated that James Delorey had been flown to the children’s hospital in Halifax. However, the prognosis for those in similar circumstances was not good. He might not live. If he survived, he might have suffered such severe organ damage that he would be in terrible shape for the rest of his life.

On Tuesday, December 8, the news reports indicated that James Delorey had passed away. There are no words to describe the profound sadness that swept over me and other parents of autistic children throughout Canada. Personally, I can say that I have not shed so many tears in a long time. I was struck by the extent to which this little boy’s tragedy upset me. James could have been any of our kids. Given the damage that his organs evidently suffered, many have suggested that it was probably best and that his soul was in a happier place now. May you rest in peace James Delorey. We love you greatly and will never forget you.

In my last column I wrote about Senator Munson’s Bill S-210 which would declare an annual Autism Awareness Day being debated in the House of Commons. The Bill now passed second reading and is being examined by the Standing Committee on Health. This is an unprecedented event. For the first time, the committee has the word “autism” on their agenda. I sincerely hope that they will rename the Bill “The James Delorey Autism Awareness Bill” and pass the Bill into law without any undue delay. Anyone wishing to make a submission to the committee may do so by sending an email to the clerk at: HESA@parl.gc.ca. Please send them a message encouraging them to pass the Bill promptly. Awareness is the least the federal government can promote. Anything less would be a shameful disgrace.

There is also further unprecedented opportunity now to lobby for improved policies and programs relating to the autism community. The House of Commons Standing Committee on Health recently created a subcommittee on neurological disease. This subcommittee will meet in the new year and establish an agenda. Initial news is sketchy, but it appears that autism may be one of the diseases that the subcommittee will review. My hope is that their work will result in the adoption in Canada of treatment best practices from abroad which is currently sorely lacking. Let’s do it in James’ memory.

[David Chan]

Sorry to say folks I am way past sad on the James Delorey. I am furious, that it takes a frozen kid to "Raise awareness for Autism"
People I think we are all aware.

I think that autism is more in the national consciousness today more than ever.

It's amazing to me that the country is all maudlin about this poor little kid that followed his dog into the woods and froze to death, but we can't come together and make ABA treatment accessible to all the children LIVING with autism.

Why don't we do the canadian thing and just have another study.

People get mad not sad

Dave
Mr. P's Dad

[Author]

Replies