Spectrum Warriors: Life Through The Autism Spectrum

What Parents Need to Know About The Revised Standards for Preschool Intervention Services

We promised we would share more with you as we got even more clarity on the Revised Standards for Agencies Delivering Intervention Services for Preschool Children with Autism Spectrum Disorder in New Brunswick (that’s a mouthful!). After continued conversations I have had with various stakeholders, I do have more information to share.

Meetings

There will be public meetings held in all regions in the coming week or two. The meeting in the Fredericton area is being held on Wednesday June 11 at 7 p.m at the Charlotte Street Arts Centre. This meeting is being organized by myself and another active parent in the community, but there will be government representatives and agency representative(s) in attendance. It is also my understanding there may be meetings in other regions. If and when we get information on that, we’ll update this post. I also know there was a meeting yesterday (Thursday) between the government and the agencies, as soon as I get an updates from that I will also post them.

20 hours of Direct Therapy per week (80 per month)

Currently, many agencies use the first month of 80 hours to pay for the evaluations and diagnoses that are covered or reimbursed to you if your child is diagnosed with an ASD in New Brunswick and you partake in the early intervention therapy. They use the second month for training staff, because let’s face it, there are no qualified autism support workers just hanging out looking for work. If they’ve forked out the $4,600 to take the UNB course, they are probably going to go get a better paying job somewhere else.  And in theory, your child’s therapy would start in month three.

What is changing with these revised standards is the government is indeed saying this is no longer possible. This absolutely concerned me when I heard this. HOWEVER, while I do still have a few concerns, I actually think something good is coming out of this and here’s why. The government indicates they are now going to ensure evaluations are funded separately (or have the agencies invoice afterwards). Although this isn’t actually an increase in funding, it means the thousands of dollars devoted to paying for the official diagnosis is not coming out of hours meant for early intervention therapy itself and that’s a win in my books.

What IS a concern, and a valid one that all agencies share, has to do with that second month of funding which is currently used for training. This would also go away and IS indeed a concern. I asked point blank how an agency was supposed to train their staff and where did that money come from? By taking away this funding, it would imply that already-trained staff are available to be hired, or that the agency has to completely pay out of pocket. That IS a massive gap – because that is simply not the case. The semi-good news? The EECD does acknowledge this gap and are in discussions with the agencies to find a solution. I am eager to hear what comes of these conversations and hope all parties can come to an agreeable answer to this.

While I agree that the evidence shows 20 hours of direct intervention per week is the recommended approach, it shouldn’t only be about quantity of hours. The ability of qualified staff to deliver those hours needs to also be taken into account.

95% mandatory attendance for children receiving therapy

The new standards state that if a child misses more than 95% of their 80 allotted hours per month consecutively for three months, which equates to more than one day per month, then the government would ask for the agency to give them back some of the money. So for example, Joey attends only 80% of his sessions, he is therefore 15% under the 95% ratio, the government wants to receive back 15% of the funds from the agency because services were not rendered to Joey.

This has always been the case, however, it was never documented clearly and worked mainly on the honour system – which we all know what can unfortunately sometimes happen to the good old honour system. It’s unfortunate, and I am NOT attacking any agencies or people on this, this is a fact of life for any honour system. The Revised Standards are now holding agencies accountable for providing them with the money back for services not rendered – to be reconciled at the end of a three-month period.

If there was indeed a case of chronic absenteeism, the agency should sit down with Joey’s family and discuss what they can commit to. The government recommends the agency discuss cutting back Joey’s hours to only 16 per week since it seems as though Joey and his family are unable to commit (for whatever reason) to 20 hours per week and in this case, puts the staff members delivering Joey’s services at risk for not getting paid, despite being available to work. However, this is left open to interpretation in the current version of the document and it needs to be clearly noted that the suggestion of reducing hours would not be intended for short-term illnesses or medical appointments.

After 2 months, they would review the service and see if Joey is able to make all 16 hours, AND whether or not he was able to make up for lost hours. There is actually an opportunity for the agency over the next 3 months (despite from what is my understanding the odd decision to review the contract again only after 2 months), to make up the “lost” hours from the three-months prior. Joey could receive more than 16 hours of therapy, which can happen in a number of different ways and would be worked out between you and your agency. That could be additional Clinical Supervisor time, maybe added/extended therapy or a therapy session in the community, meaning the agency could reconcile back with the government for the lost hours (that they would have already paid back). This is currently happening with us, because we were actually owed hours due to an unfortunate illness with a worker. My daughter has had a support worker at gymnastics and ballet classes, which has been AWESOME!

However, I do feel that 95% per month is a bit tight. One day (on average) per month? That covers one doctor’s appointment.. It instills a fear of “Guess we can’t get sick ever. Or if she does, I can’t catch it.. or nothing else can ever go wrong in our lives.” I really think that when you look at the fact that our kids often have other things going on and need to travel for medical appointments – often several hours away, that number is wrong. I’ve been very vocal about that since day one. I do agree there should be a standard met – but I’d personally like to see it around 90%. I think allowing for up to 2 days per month of missed therapy (for whatever reason) is reasonable. Remember, therapy is usually only a half day anyways.  So if you’re lucky and your appointments are local, you may, just may be able to schedule your appointments around therapy sometimes without too much inconvenience. As I noted in my earlier post also, if such a high target is kept, more parents will choose to send their kids when they are sick to avoid lost hours, which obviously means more workers will get sick and more kids will lose therapy, and that is a shame. These two days would still be paid as direct hours by the government and would therefore allow for ample additional prep time by staff. I think 4-8 hours of prep time for an ASW is pretty reasonable, although depending on your programming needs, some exceptions may apply.

I also think we need to account for the fact that we live in New Brunswick and WINTER happens. Either the Centre’s closed because it’s not safe on the roads, or parents do not want to drive their kids on the roads. With the winter we had this year, I am pretty sure most of us would have easily missed the 95% mark for snow days alone, let alone the fact that it’s cold and flu season and the Department of Health (I believe) mandates that kids can’t have therapy if they have any number of things wrong with them.

Within these revised Standards, I think one day per month over three months is not reasonable. Personally, I think two days per month, looked at as a trend over six months would be more reasonable and would account for fluctuations due to things out of everyone’s control – like weather.

Staff payment

Under the Revised Standards, if Joey (poor Joey, I am picking on him), ends up missing four days over a three-month period, the agency would have to give back hours for one of those days. The other three days would not be disputed and could be counted as indirect prep. However, who/how the staff is paid for that fourth day IS a question and area of concern. If the agency chooses to pay the staff member (who may be doing work, or may not have work to do) for that fourth day, that is the agency’s decision to make. How they pay the staff would need to come from the “for-profit” portion of their business. If you read my previous post, you’ll know that the agencies are a business and whether it’s large or small they do make some profit (what that is varies by agency). If they choose not to pay their staff, that IS a BUSINESS decision. However, as I noted above, I do think the 95% attendance is too high and can understand somewhat where the agency may be coming from when they say it might be harder for them to do so. If this dropped to say the 90% I suggested, this becomes more about what happens on the seventh day that Joey’s parents have cancelled therapy in three months. On that front, that’s a lot of “indirect” hours being paid to a staff member. If you further varied it over 6 months, instead of three as I suggest above, I do think it would balance out a bit better and there would be less concern about staff pay.

I also want to touch on a subject that isn’t in any documents, but was touched on in my conversations with the EECD. The idea that there would be multiple trained workers per child. Currently, there are 2 ASWs assigned a child, a lead therapist and a CS. If an ASW is sick, unless the lead or CS can cover, the child does not get therapy. They would like to see some sort of model that allows for multiple ASWs to be on a case and in the event a worker or a child misses therapy, ASWs could be reassigned and not lose pay.

In theory, this sounds like a great idea. However, many kids with autism, Sabrina’s and my children included, have extreme anxiety and difficulty with change of any sort; they have 2 workers for a reason. My daughter puts on a show in public and holds things in until we get home and the door closes, then she lets go and the meltdown fun begins. It took her at least 2 months before she ever started to show signs of a meltdown in front of one of her workers. It took that long to build trust and a relationship with her ASWs and even longer start to see results from her programming. It took even longer for our CS to see more than just “anxiety behaviours” when she came to visit because of the way she holds things in.

Often many of our programs have to be shaped up over the span of 2-3 months. If there were several workers she had to get used to she would constantly be anxious to know who was coming and was I sure that person was coming and what if they changed at the last minute? These are the questions she asks about going to daycare, or anywhere. Yes we are working on it, and through tools and social stories it is getting slightly better, but her anxiety will never go away. So yes in theory this sounds like a great idea and approach, but I’m just not sure it’s the most practical one considering many kids are only in therapy for no more than couple of years before they go to school. That’s not a lot of time working on actual therapy if you have to spend several months building relationships with multiple different people (on top of leads and CSs).

Training

Back to the topic of training for a moment. I noted above the gap with regards to how training is funded, but there is another gap, that has been discussed in some circles, that is also worth understanding. While the government states some basic requirements for workers, and the Standards document does indicate they should have something like the UNB course or an equivalent, there really is no formal training plan or training standards in place. There are indeed intentions to have these plans, but at the moment the EECD is focused on providing training to schools. They are training Resource teachers who can then train EAs.  There’s been a lot of talk about the UNB course and that without staff being trained using this course there is some concern staff will not be trained in evidence-based therapy approaches (I am paraphrasing and not attempting to put words in anyone’s mouth).

The EECD has admittedly moved away from the UNB course, and is instead using approaches developed by the Lovaas Institute. To be clear, the Lovaas method as it is called, still uses Applied Behavioural Analysis as a treatment method, but indicates the implementation of this may vary based on a child’s unique needs. What the EECD would like to see happen is that the agencies delivering services to our preschool children and the schools they transition to use the same models and approaches so that the transition becomes easier and more consistent. This is not a bad thing. Going through the transition meetings currently with my daughter, I can see some of the gap now and agree it would be great for the two groups to be closer together (although I will admit our school seems ridiculously fantastic and willing to work with us to make the transition easy and I am very pleased thus far and slightly less anxious myself about what September will bring).

The problem, however, is currently there is nothing that states when this will happen, or how it will happen. Going back to the funding dilemma for training noted way above, this IS a problem and a definite head-scratcher. And with an election looming, unfortunately, without anything written in a document, politics can get involved and it may potentially change things. I’d personally like to see a stronger commitment to training and definite timelines laid out. I have nothing against my agency, but training is up to each individual agency and I actually think that should not be the case. I think training for new staff should be done by an independent body and be based on consistent standards and courses/practicum that would allow staff to move amongst agencies if they desired to move from Fredericton to Saint John and not have to possibly worry that perhaps every agency may train staff slightly differently. Ongoing training could be managed by the agencies and monitored by the EECD.  I think any document that doesn’t outline how staff are trained or where it is funded from is missing the mark. So I do hope that this is addressed sooner than later.

Funding!

I saved the biggie for last. I mentioned a few times that agencies are for-profit businesses. They are paid a lump sum of money per child for 80 hours of intervention per month. Out of that money they have to divide it up to pay for:
– 80 ASW hours
– Lead Therapist (which is stated as optional in the document and I disagree with that… Lead Therapists should be mandatory, as they are a bridge between the CS and the ASW. They can help with training and more junior ASWs, or help with more challenging clients)
– Clinical Supervisors
– Supplies, toys or therapy tools (timers, sensory items, etc.), materials prep, books, photocopying, binders)
– Administration fees, which include rent, the director’s salary,  heat, electricity, cleaning items
– Vacation, snow and sick days for staff
– Other indirect Prep
– Ongoing training and conferences to stay knowledgeable and relevant
-PROFIT

So while the government is indicating they are only paying for direct hours, what is not stated is that a portion of the money spent on direct hours does indeed go to some indirect stuff. It’s a formula that says for every hour and dollar spent on direct service, a percentage of that sum will be spent on the above areas. HOW and WHAT those percentages are vary from agency to agency. There are NO standards on this and NO caps on what profits can be. Now, don’t get me wrong, I am by NO means saying that agencies are a money-grubbing business. I recognize there are issues with funding and the agencies don’t get a lot, but I also am a realist and I know they are making some kind of profit, some more than others. I do NOT have any access to their financials, so I can’t really comment fairly much more than that. However, I do wish they would share their formulas and I’d love to compare agency to agency and see how close they are.

I CAN however tell you what each the government pays each agency for the 80 hours per child per month – $2,291.67, which works out to be about $27,500 per year. That is about $28 per hour. If you pay for example, $11 per hour to your ASW, that’s $17 remaining per hour to divvy up into the above groupings. And if you as an agency decide to give your staff raises, that percentage of what is divvied up drops even more. That’s not technically a lot of money.

I do think the idea behind the changes and the audit is good. I do think the agencies need to be more accountable, I do agree with many of the proposed ideas. The HOW some of these are to be carried out are unfortunately a little too vague and there are definitely questions to still be answered and identifiable gaps that all parties agree need more discussion. I think it’s a shame the policy was put in place before the discussions were completed and before agencies had all the clarifications they needed. And while there was some (minimal) consultation with parents, there was definitely not enough. And not enough has been done to explain any of this to parents. I do hope you will attend your meetings, ask questions and then make informed decisions.

And please, please ask us if you have any more questions!

Happy advocating,

Rebecca

 

 

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    1. Q & A on Autism Funding in New Brunswick | Spectrum Warriors:The ABC's of Life in the Spectrum-Tips for Parents
    2. UPDATES: Early Intervention Changes in New Brunswick | Spectrum Warriors:The ABC's of Life in the Spectrum-Tips for Parents

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