[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Dorothy Ray]

Hi everyone. We have reached a point in my son's life where we need to make some critical decisions about which direction we want to go with his therapy. He is receiving glowing reports from a "reliable source" that he is doing well (better than half of his classmates) in terms of his schoolwork, behaviours, social skills etc., and he is seeking and being sought after for playdates that he doesn't have time for because of the combination of homework/extracurricular/therapy he contends with daily.

How do you know when it's time to "let your child fly" so to speak? I'm very reluctant to discontinue therapy altogether as he has a couple of things (food issues, pencil grip…) to work on with professionals who specialize in these areas, but I do wonder how other families have dealt with the question of when to end the behavioural aspect of their child's therapy or how to keep it going while allowing their child more time to participate in the "typical" activities of childhood. At what point do you stop looking at every behaviour or foible as being autistic vs. being a typical kid thing to be dealt with in a more non-therapeutic, "typical" way.

I would be grateful to hear from anyone who has or is facing this question themselves. Please feel free to respond either by way of this chat board, or privately at roganddot@shaw.ca or (604)583-4385.

Thanks so much! Dorothy

[Nancy Walton]

Now is a good time to put a plug in for the Autism Society of BC web site that also has a chat board. On this chat board, you may discuss anything that has to do with autism.

The feat chat board is limited to discussion on science based treatments for autism. It is a good place to ask questions, just in case there is some peer reviewed science out there that deals with the question. At the moment, only ABA has peer reviewed studies of efficacy and as for causes, the jury is still out on the many possible causes.

So, in order to not "water down" discussion on ABA treatment, please continue discussion on other topics at the ASBC chat. (Just say, "I'll meet you on the ASBC chat to continue").

While you have to join ASBC in order to get on their chat, the chat is otherwise free. Just type in "autismbc" in google and it will take you there.

Nancy Walton

[Barbara Rodrigues]

Hi Danielle:

Unfortunately MCFD does not do 'backpay' even though D missed out – my son was cut off by MCFD over 2 years at different times (before the Auton case way back when) and even though I took them to the Children's Commission and won – they never gave us back the funding that they had denied in the prior years.

On a more personal note – I just wanted to say as a parent I am so very happy that D has someone like you in his life – you have brought tears to my eyes listening to your love and dedication to this little boy – 6 1/2 years old is still young – you will have a very good chance to make a huge difference in his future. (Of course that said – there should definitely be more funding available and progress does not stop at 6 so neither should funding – but hopefully we will all work towards that goal and win that someday soon.)

I wish you all the best – this world truly needs more people like you in it.

Barbara Rodrigues
Jeremy's Mom

[Deleted User]

By Colleen (Elgood) on Friday, September 30, 2005 – 5:37 pm:
Has anyone had a bad experience with the shots given in grade 6…!

I have a 500kb pdf by an Australian naturopath on this. Also DAN physicians do have opinions on the subject.

The biggest hurdle is in getting the school doctors to give you the name and brand of the immunization. The label with the description that could be cross referenced to discover the contents.

[Danielle Cross]

Z,

thanks for the info. Our son's "1-1 worker" is NOT an ABA worker, just a child-care-worker. He was already working with D when D joined our family, and had been for over a year. Initially, he was working with D for 12 hours a week. "Working" is kind of a loose description; MCFD provided the worker as a support to the previous foster family. Then kept him on when D came to us, to provide some continuity in relationships for D.

MCFD has since cancelled that contract, so, while the worker is still an agency employee in regards to the other kids he works with, his contract with us is private. As a result, I'm able to pay him slightly less than the agency charges – he's getting $16/hr rather than $19/hr.

To be honest, it's a dreadful waste of money. We only continue it (only at 3 hrs a week now) because D adores him. But he's not really working on any skills, if anything, a lot of inappropriate behavior is reinforced – ugh. I'm hopeful that we can have the worker get on board with our ABA program once it starts up, and then we'll be getting "our money's worth" so to speak.

The agency we're going to be getting ABA through is Pivot Point. They seem quite competitively priced. The behaviorist comes in and does the assessment, designs the program, and trains us and our "staff", along with the worker they provide. We then get 5-7hrs a week of therapy from their worker, along with the therapy we put in place ourselves. I definitely see the value in setting up one's own ABA program, but I am not at all experienced enough to oversee one.

As for extra funding with D being adopted, we're "sort of" getting that. He's getting six months of one afternoon a week at a daycare centre paid for (for socialization purposes – and a nice break for me!). He's set up with play therapy, which just started. Right now we're working on getting the ABA paid for and set up. It will be covered partly through the Post Adoption Assistance option, partly through applying to the "guardian trust" (from what I understand that's the "extra" budget MCFD has for kids in care). The SW are very much in agreement that ABA is necessary for D, and that he deserves (as do we!) to have that happen.

Does anyone know if there's some way to apply for extra autism funding for D, since his previous caregiver never "bothered" with it? He missed out on having ANY early intervention – it's totally appalling. D was diagnosed a month before his 5th birthday, and received less than six months of very limited intervention via the Child Development Centre, which was NOT funded through the autism funding, and that was it. We didn't get him until he was 6 1/2, so that's over $20,000 in services he missed out on. Nevermind the fact that if he'd been in a half-way decent foster home and had a social worker with a brain he'd have been diagnosed much earlier…

It's so hard sometime, knowing all the opportunities my son has missed, and how so many people, along with the system meant to protect him, have let him down

I know it's useless wishing we'd had him sooner, but it doesn't stop us from doing so…

[Deleted User]

The funding I mentioned is the meager autism funding for children over the age of 6. The amount is $6000 per year and won't cover much cost wise in an ABA program but every little bit helps!

Perhaps with some proper testing D's school will see learning potential and hopefully set up some appropriate goals. But realistically, if you want someone to individualize goals for D, I wouldn't wait on your school. Even with a proper assessment, they will likely overlook, underestimate and dismiss D. A qualified consultant can provide you with additional training to maximize you work with D and help to connect you with staff. THey will set systematic academic goals that will allow D to learn. Again this would be something that the ABLE clinic may be able to assist you with as they have several consultants on staff and are also connected with those who are not on their staff but reputable.

The thought of D, wasting his day in the resource room with dot to dot worksheets has stuck in my mind… the days of glorified babysitting for our children must end! What a waste of desperately needed money that could be utilized to change D's daily life.

Please feel free to email me privately at michelle_karren@hotmail.com if you have any questions that you can not post on the FEAT board (i.e. confidential)

[Dave Collyer]

Hi Danielle,

Yes what I call IF program funds are what you call EAI. My son is still under 6 so we have a 20+ hour per week ABA program on the go (we top up… and are considering pulling him from preschool given SCDs recent program changes and funding cuts…shared aid models et al and dumping the tuition into more ABA program time).

Your contract worker… is that thru an agency? In my experience most agencies charge twice what a private contract would cost. For example here in Vic CAFCA (a local and other wise awesome agency IMO) charges 30$ per hour for an AI worker… I pay mine between 12-18$ per hour depending on experience (nad how badly I want to keep them on my son's team). CAFCA's overhead costs would reduce an ABA program I put together thru private hiring/contracting in half. They offer the easy way out so you don't have to do any hire-fire-train-accounting work but direct service ("face" time) is cut in half… The biggest joke is Queen Alexandra Center for children… they intend to offer a 7 hour per week progam and will only take all of my son's IF funding… 20,000$ per year for seven hours per week of servicce vs. 20+hours per week if you put the time into setting up your own program. As your son is over 6 obviously you would look at a smaller program given your funding but the fact that private is 2 or 3x's more cost effective remains a valid issue.

One of the old social workers I used to work with used to arrange for "departure" funding. If the child was leaving MCFD and returning to a family or being adopted she used to apy in advance for all programing as far down the road as she could (ie. music therapy was paid for a year, swimming lessons were paid for for 3 months, annd so on). If you have not already done so the social worker or your son's other agency workers might be able to advocate for some programing to be paid for now… don't wait until you adopt. It is in "d's: best interest and most CLBC folks I know really do care and will spend what they can if it is part of the care plain.

Z

[Nancy Walton]

Danielle Cross

Please contact me as soon as possible

Nancy Walton
604-538-8021
wiklo@shaw.ca

[Danielle Cross]

"Individualized Funding Program" – is this the same as the "Extended Autism Initiative", or "EAI"? The $6000 per year? We're getting that currently (or rather, the Ministry is getting it, as D is technically still a child-in-care), and using it to cover one hour per month of PT/OT, two hours a month of Speech and Language, and 3hrs a week with a one-to-one worker. It sure doesn't go far…

Once D's adopted, my medical will pay for the PT/OT, and apparently I can get "The At Home Program" to cover a good portion of the Speech and Language, so that will free a bit of it up, but not much. We don't plan to renew the one-to-one worker when the contract is up next August, we already cut the hours in half this year. D's not learning much with the worker, but really enjoys their time together – he was with this worker before coming to our home. But I'd rather use the money on ABA.

[Dave Collyer]

Hi Danielle,

I would imagine that the funding being referred to is the Autism Funding thru the Individualized Funding program. If there are other funding options please let us know Michelle.

http://www.mcf.gov.bc.ca/autism/index.htm

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