[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

[Deleted User]

Self-advocates and microboards.

The person that posted the original post here indicated that they were not familiar with these groups so I thought that I would shed some light on the subject if I may.

The self-advocate group is a very active group of individuals with special needs that advocate for their rights. Microboards are non-profit groups usually formed of self advocates and their families that apply to the ministry for funding to pay for care and respite services. These were formed to assist families financially in caring for their family members with disabilities and also to pay for some respite services. As a family member caring for an adult with special needs the gov't will not pay you to do so as it is considered a conflict of interests yet they will pay for strangers to care for that family member. That is why micro boards were formed. The micro-board bills the ministry and the micro board is the one that provides funds to the family.

Robyn in Powell River
Mom of Justin age 5 ASD and sister of special needs sibs one of which lives with me.

[Deleted User]

Hi

Here is something of interest that I received today… To be honest, I don't know who this group is (or is it a government committee?)

Rob

NOTICE OF PROVINCIAL MEETING
FOR SELF ADVOCATES AND FAMILIES
COMMITTED TO INDIVIDUALIZED FUNDING
AS AN OPTION FOR SERVICE AND SUPPORT

WHO: Any self advocates and family members that wish to see Individualized Funding as a viable option for families and individuals within the Community Living Services sector. This meeting is intended for all those interested and is not connected to any one group or option for Individualized Funding.

WHAT: Over the past three years or more self advocates and families have been meeting to discuss how best to create a mechanism for Individualized Funding for our loved ones with developmental challenges. As an extension of those meetings, a small group was struck to look at ways to incorporate the vision, philosophy, ideas and concepts into a working model that could be implemented by government (see WHY below). This group is currently working to synthesize those ideas into a proposal. This proposal will be available shortly, and will be the focus of the meeting September 22, 2001.

WHY: The new Provincial Government has made a public commitment to re-creating services within the Ministry of Children and Family Development, including Community Living Services. They have further stated that this commitment is built around the theme of bringing supports, services and decision-making closer to the community. This could mean many things. The Minister and Deputy Minister have stated they are open to considering proposals that demonstrate a strong vision and solid community support. However, the timeline for this process is very short. Information and proposals must be finalized, have demonstrated support, and be back to the Ministry by the end of September. The time to act is now.

This meeting is not intended to review whether or not we are committed to the concept of Individualized Funding. Is to comment on the proposal, fine tune, and strategize for presentation to government.

WHERE: Centre for Peace,
1825 West 16th Avenue, (West 16th and Burrard)
Vancouver, B.C., V6J 2M3

WHEN: Saturday, September 22, 2001

TIME: 9:30am to 4:30pm (A light lunch will be provided)

To ensure adequate seating and reserve lunch please RSVP by September 17th to:

Linda Perry, Vela Microboard Association of B.C.,

5686 – 176th Street, Surrey, B.C., V3S 4C6

phone: 604 -575-2588 fax: 604-575-2589

e-mail: lindaperry@microboard.org

This meeting is open to self advocates and families throughout B.C. If you are traveling from outside the Lower Mainland and you require some assistance with expenses related to that travel, a subsidy up to $150.00 per person may be available. Please let us know when confirming your participation if you would like to request a subsidy.

[Susan Burns]

i walzed into my mla Ken Stewart's office thurs., with the above 25 page draft…..i am hoping to meet with him fri. spbpt@pacificcoast.net

[Linda Cucek]

Try this link again:

Dear Dr. Morris:

Please check out this link:

http://audio.pbs.org:8080/ramgen/newshour/expansion/2001/08/24/autism.rm?altplay=autism.rm

Regards,

Linda Cucek

PS Please let me know what you think?

[Linda Cucek]

Hi Everyone:

I have a link I would like you to check out:

http://audio.pbs.org:8080/ramgen/newshour/expansion/2001/08/24/autism.rm?altplay=autism.rm

Regards,

Linda Cucek – James mom

[Sabrina Freeman]

Dear FEAT BC members,

Over the past few years, many of you have asked how you can help lobby government. Well here's your chance. FEAT BC has produced an individualized funding program called the "Choices in Autism Treatment" or CIAT program. For those of you who would like to truly enact change in our political system, I strongly recommend that you download a copy of the program and visit your MLA and demand implementation of the "Solution" to the autism treatment dispute in B.C. This brief is based on an individualized funding program that already exists in the Ministry of Health but has, to date, been ignored by the Ministry of Child and Family Development. The FEAT BC 'CIAT' brief is fully in sync with the Liberal New Era philosophy of family choice in autism treatment.

Please download, and present to your MLA, your copy of the FEAT BC 'CIAT' program at:

https://www.featbc.org/CIAT_brief.pdf

If you have any questions, please feel free to give us a call.

Sabrina (Miki's mom)
FEAT BC

[Karen Anthony]

Many thanks to David and Barbara McCleod for their eloquent "thoughts" regarding ASBC vs. FEAT (Friday, August 17, 2001). Well said!

On another note I would like to share a letter I wrote to the Times-Colonist regarding an article they ran on Sunday, August 12, 2001 (See Isaac (Tamir) submission to FEAT discussion on Thursday August 16, 2001, for download access of this article).

I submitted my letter to the Times-Colonist on August 15, 2001. To the best of my knowledge, to date, there has been no letters to the editor printed regarding the article.

Attention: Letters to the Editor

In response to "The Children of Autism", there are discrepancies in the Liberal government's position.

In an Opposition News Release dated July 28, 2000, then Children & Families Critic Linda Reid states, " The government's recently announced pilot project for children with autism is far from adequate, and only came on the eve of a court action that finally forced the NDP to act." Translation: Reid admits the 'pilot project', now called EIBI, is a made-for-court NDP boondoggle.

Now Reid supports the NDP program she denounced as "far from adequate" while in opposition. She maintains the pilot offers a legitimate "… range of treatment [and] … bottom line is that these programs are brand new". Reference to an evaluation of this program to provide the "research base that critics argue is lacking" suggests government is looking to support a biased, made-for-court program. A $1.2 million contract to study the EIBI pilot has been awarded — without tender — to the same organization that helped develop the pilot "on the eve of a court action". Why develop and study a new program when research on proven, medically necessary treatment (Lovaas-type treatment) has already been well documented, including the comprehensive Clinical Practice Guideline of the New York State Department of Health? Lovaas-type autism treatment is also supported through volumes of expert testimony given in BC Supreme Court, yet is still is not funded as a 'choice' for families.

Another flip-flop: the Liberals loudly criticized former Premier Dosanjh's appeal of the autism court case and criticized the very need for families to go to court. After the landmark July 2000 BC Supreme Court decision on autism treatment, Linda Reid said, "Once again, British Columbian families were forced to go to court in order to have their concerns addressed. These families can't afford any more delays of inaction from the NDP … " Now, Attorney General Plant takes a different stance. Government is going ahead with the Dosanjh appeal they criticized when in opposition, without much concern about how "more delays of inaction" affect the children requiring this medically necessary treatment.

Linda Reid said in July 2000, "We applaud the parents and families who have sacrificed so much to finally force the government to address their concerns". For the record, our family's concerns have certainly NOT been addressed by either the NDP or Liberal government in this matter!

Karen Anthony
Victoria, BC

cc: Premier Campbell
cc: Gordon Hogg – Minister MCFD
cc: Colin Hansen – Minister of Health Service
cc: Linda Reid – Minister of State – Early Childhood Development

[Linda Cucek]

Hi Everyone, I want to introduce you to a website that will help inspire everyone that we do have hope of not institutionalizing our children. The father of Rain man is very much alive & the Rain man. I have contacted him & he is going to help me and show me a plan of what they do in the United States to avoid institutionalizing our children. Linda Cucek James Mom
The "Rain Man"

Kim Peek, the man who inspired the " Rain Man " character played by
Dustin Hoffman (costarring Tom Cruise) is alive and well today in
Murray, Utah. This incredible human being is even more gifted in reality
than the movie portrayed. Most astonishing of all, Kim has never needed
to be institutionalized, thanks, in large measure, to the on-going efforts
of his dearly-devoted father who, incidentally, is still very much alive.

Kim and his father, Fran Peek, make hundreds of public appearances
each year. Kim has been visited by Presidents and movie stars, yet
remains humble, trusting of others, and looks forward to meeting and
helping people. The scientific community considers him an invaluable
treasure, due to his astonishing ability to not only remember everything
that he has ever seen or read, but, more importantly, his almost perfect
comprehension score. Kim can also perform lightning-fast calculations
that shame today’s fastest computers.

The father-and-son team also offer an invaluable insight to governments
and "heads" of state, on how to organize community services and
resources in a manner compliant with the goal of re-integrating each
person with learning disabilities as a contributing member of society
by teaching them the skills needed to live independently. This avoids the
necessity of institutionalization, which, always results in far greater ultimate
cost to society.

"Rain Man" web-site: http://www.bvcriarc.org/kimpeek.html

The above introduction was compiled by Stan Cucek

[David and Barbara McLeod]

Re: The ASBC vs FEAT position on autism treatment

I would like to add my thoughts to the discussion that has been on the list this past week.

It is unfortunate that our quest for funding for treatment for our children now includes open animosity and polarisation of two groups who have, we would assume, as their main raison d’etre, better treatment and increased successes for all of our children with autism. What a woeful waste of emotion and energy! Lord knows we need all of both for the job at hand.

Most of us, as FEAT parents, started our autism journey by approaching ASBC. We were advised of the services available (or not available) to us through Government Social Services, invited to support group meetings and given a list of what was in the library. We have moved quietly but surely away from ASBC because the government services we were offered (when they were available) were woefully inadequate and our children needed treatment not support. FEAT offered us the comprehensive information we needed to get our children onto the ABA programs that are making a difference in our children’s learning and lives – scientific information, therapist training workshops, lists of resources, parent education meetings, lists of ABA service providers, … and at no membership fee and token registration costs. We know the urgency of effective treatment NOW. With the purpose of securing funding for effective treatment and access to this treatment regardless of ability to pay, some member families of FEAT pursued litigation to return autism treatment to Health Services and to seek individual funding for ABA treatment programs. Is it surprising that our numbers continue to grow and our loyalties deepen? Or that our frustration with ASBC flares when it becomes clear that parents are not even told about ABA as an option, are discouraged from considering ABA (expense, too hard to manage…) and that the organisation that is deemed to represent our children stands up in court on the side of government vs families seeking financial support for home programs?

For most of us, we have simply put ASBC “on extinction”, and moved on. We have been “reinforced” by the progress our children have shown and continue to show. We have a sense of shared purpose and hope with fellow FEAT parents and we wish to have a voice at the table in government decision making discussions that impact treatment options for our children. We DO believe that there IS only one truly effective treatment for autism and that belief is based on research, data and results. We know that ALL children can benefit from this treatment and that many can be normalized. We know our children can go to school without the difficult behaviours that make them “unwanted” in many schools. We fundamentally support parents rights to choose treatment options and we expect, in return, that our choice will be honoured. We do not believe that our children’s best interests are served, nor that scarce resources are best spent, by giving government contracts to groups to offer monopoly treatment services. ( Hence, we do not wish to work with government to make the current EIBI program work.) Individual funding will allow parents to spend treatment dollars with the service provider of their choice. Those who produce results will have large clientele; those who do not, will not. We include the current EIBI program in that. We do not expect to be handed dollars without accountability. We are not worried about accountability or program evaluation for ABA programs – receipts and results are built in to our programs. Hopefully the current EIBI program parents will be offered the same (receipts and results). We are not satisfied with funding to age six only; schools do not offer adequate support or treatment for our children and autism does not disappear nor do our children stop learning on their seventh birthday. We have to step out of the current whirlpool of inadequate resources and start our children swimming upstream.

FEAT parents have been forced to branch out on our own and to leave the ASBC doing what they do. While we made no demands on them to pursue our program option, all was peaceful in the land of autism. Now that we wish to have access to the dollars that some of our families have generated through litigation, it seems that the war is on. When we express our opposition to the government designed program that once again is an “our choice or no choice” option, we are painted as ill-mannered discontents and chided to behave, be grateful and “work with them”. I don’t think so. I, personally, am happy to let ASBC do that. I am relieved that this government knows that ASBC is not the only autism organisation that represents parents in this province. If ASBC truly wishes to work for all children with autism, let them recognise and support the fact that FEAT also represents parents and that our voice should also be heard. Let them stop seeing themselves as “the parents” and treating us as “children” in this debate. We do not need their counsel nor their scolding. We will not be silenced nor bullied into “walking the straight and narrow”. Our war is with autism not with ASBC.

[Barbara Rodrigues]

Great article in the Victoria Times. Sabrina got her points out strong and clear. I was upset to read the Attorney General's comments though. I have written him to voice my outrage.

Unbelievable! He says "Who is to make health care policy?" "Is it to be elected representatives of the people in government or the courts?" HA! The only reason this went to court is that for years the 'wonderful' elected representatives NDP ignored our pleas for help for our kids. They ignored the petitions, the letters, the doctors letters. So with no alternative, parents take the Government to court. They win, then the NDP appeals it. This is condemned by the Liberals (remember the radio interview between Joy McPhail and Christy Clark?)

I wonder how Mr. Plant would like it if his child's health care was in the hands of an incompetent social worker? I wonder how Mr. Plant would like it if he had to beg, jump through hoops or walk a picket line for 100 days to try and get only some help towards his child's medical condition?

Just some early morning thoughts.

Barbara Rodrigues
Jeremy's Mom & Advocate

[Author]

Replies