Spectrum Warriors: Life Through The Autism Spectrum

Changes to Autism Funding in New Brunswick

Last night I started noticing posts online from parents worried about the communication they are (or aren’t) receiving regarding a change to autism services in New Brunswick. Before posting my opinion, I started researching this morning and collecting all the facts. I have spoken with our agency’s program director, the program advisor (Jeff den Otter) for the government and some other well-respected and active community members. I do have more information to share and what I think is a clearer picture that will hopefully address some of the concerns.

Yes, the funding agreement the province has with the six agencies in New Brunswick IS changing. Overall, the reasons for the changes make sense, they are needed and they are actually aimed at increasing flexibility and services for more children. However, there ARE indeed a few more things that need to be clarified and ironed out, because some of the details are still rather vague and could potentially be deemed slightly unreasonable. Please read the entire post below, and if you have any additional questions, please feel free to ask us. We will only report on the facts and if we don’t have the answers, we will seek out the professionals who do. Also – please scroll to the bottom for information a public meeting taking place Wednesday June 11 in Fredericton.

The current funding model was put in place eight years ago and hasn’t changed.
That’s a long time for something to stay the same, so an audit was done. The audit flagged that there were continuous hours paid for underservice – e.g. paying for 20 hours of therapy per child when that child may have been receiving significantly less than the allotted 20 hours on a regular basis.

We all know that our kids get sick and we have medical appointments, but unfortunately not all parents are willing to take therapy seriously. I am not generalizing, but there is a small percentage of people who do not take their child’s therapy as seriously as they could – for whatever reason. It’s like the saying goes: one bad apple spoils the cart.

That is a waste of everyone’s money and that money could be better spent, but the agencies currently have no way of making parents accountable for regularly missing sessions without good reasons. This means other children who are currently wait-listed and who would/could attend all 20 hours can’t get help.

95% attendance record
The policy does imply that there is a 95% attendance rate required, reviewed on a quarterly basis, so in theory, if your child misses more than one day per month for three months (a quarter), your services could be reduced. Below is the excerpt directly from page 13 of the document:

When parents cancel intervention services regularly, or “no show‟, agencies are obligated to reduce services to a level that the family is able to commit to. If after two months or more, the family is able to return to the original agreed-upon level of intervention, the agency will increase the number of hours. It is the parent/guardians responsibility to inform the agency regarding expected cancellations. The objective is to promote maximum intervention for the child‟s benefit. The agency is obligated to return funding for services not rendered.

The attendance target is 95% of the agreed upon level of intervention. Reconciliation of hours will be performed quarterly and any cancelled services over 5% will be recovered from the agency on a quarterly basis. Planned vacation scheduled by the parent (up to two weeks per year) is permitted without reduction in funding to the agency.

This was probably one of the most concerning areas to me. Here’s a situation we had recently, that I’m sure many other families face:

We had to travel to Saint John and Halifax in the same month for specialist appointments. My daughter was then sick for two days after that. We missed four days that month. The month before she had some testing for seizures and we had a household emergency that required cancellation. Then this month, there were cancellations due to illness, doctor appointments and ending early for ballet recital rehearsals.

This is not something that happens regularly, but outside of the ballet practice, these situations were beyond our control and it would not have been our wish to cancel therapy. According to this document however, we would end up potentially receiving reduced services. I know we are not alone in having examples like this and I do not think parents should be penalized services in this instance – especially when things like medical appointments are take it or leave it. Surely there must be some flexibility or leniency.

What I have learned is that when this quarterly reconciliation process takes place, there is room on the forms for “comments” where it could be noted that the reasons for the under 95% attendance rate are reasonable, and when looked at, would be deemed extenuating circumstances that may not get funding reduced.

However, this is not clear in the document and is only an interpretation of what would seem like a common sense approach. If in fact there is room for such understanding of these kinds of situations, it does need to be clearly documented somewhere, otherwise parents will be fearful of cancelling. Which means they will send their kids when they are sick – which means the support workers will get sick more often and they will the ones who cancel and then all the kids will suffer even more.

What also needs to be discussed is that while 20 hours of direct intervention is recommended per month, it is simply sometimes not possible for parents to meet these commitments and the current set up does not allow for this. What this is designed to do is to review and provide services based on the hours a family can commit to. If you regularly cancel and average 10 hours per month on a regular basis, then you should have a contract that states you can commit to 10 hours per month. This would mean the staff that have been hired to provide 20 hours of work, could do 10 hours for you, and 10 hours for another child waiting to receive services. This means more families might be able to access services – and with the CDC indicating that the ratio of autism spectrum disorder is one in 68 children, there will be even more kids on the waiting lists not being able to receive therapy because of mandated 20 hour per week contracts. This seems to say, let’s determine what is reasonable for you as a family. After two months, let’s review and decide if this is still the right level for you.

The other thing that is noted in the document is that while the funding has to be paid back at the end of the quarter, the agency has the chance to recover lost hours over the next three months and reconcile the money back again.

 Direct vs. Indirect  hours and funding
There’s a letter going around written by one agency that states in their interpretation, that the province will now only fund 20 direct hours per child – i.e. therapy where the ASW and the child are present with room of 30 minutes (15 mins before and after) for associated paperwork and prep. They indicate this means there is no funding or payment to the workers for any other prep and that the workers will not get paid if you cancel.

This is extremely inaccurate. Let’s be clear. These agencies are a for-profit business. The government pays them a sum of money per child for 20 hours of therapy. This sum of money (from my understanding) is not changing. It’s how the agencies are accountable for the money that is. It’s up to the agencies to determine how they divvy up the lump sum For example:

  1. % of money goes to ASW for 20 hours of therapy, which includes all direct hours and any indirect hours they pay for as part of the staff salary they choose to pay
  2. % of money goes to lead therapist and CS for additional work they do
  3. % of money goes into overhead for rent and administration etc
  4. % of money is profit

What those percentages are vary by agency. What agencies pay their staff, and the number of paid staff sick days are not mandated by the province. This is up to each individual agency. The government is saying, if you have only provided 10 hours of direct therapy (which includes the time you pay for indirect prep), then you need to give us back 50% of the lump sum we gave you. Keeping in mind that the other 10 hours are inclusive of points 1-4 above. If your client has a 95% attendance rate and cancel only one day per month  that day is covered and deemed reasonable. If your client cancels more than once per month on average over three months, then that is when the government wants to get some of their money back.

To be clear – this is NOT a change in funding, they have always asked agencies to reconcile hours this way, but there was no process in place for making sure it happened. They are now simply asking agencies to be accountable and provide records of the number of direct and indirect hours they spend per client. This is part of the auditing process and if they see they are spending significantly more indirect than direct hours, wouldn’t you agree that something may need further investigating?

Direct hours
o Funding to agencies incorporates all costs, including direct and indirect activities. Agencies receiving full funding are expected to deliver 20 hours of direct intervention per week, per child. Agencies delivering fewer than 20 hours of direct hours per week will receive funding proportionate to the actual direct hours delivered.
o Funding will be adjusted relative to the number of direct intervention hours provided to the child. This will be documented within the service agreement between the agency and parents and will be reported to EECD.
o Direct intervention by the autism support worker, senior/lead therapist and clinical supervisor to a child either within the home, child care setting, clinic or community setting identified within the child’s case plan. This includes the immediate preparation and clean up time for the intervention sessions (this would be estimated at (15-30 minutes per session)
o any direct assessment and/or observation time by the clinical supervisor with the child for assessment and/or monitoring purposes
o time of the clinical supervisor or lead/senior therapist with an ASW while with a child doing direct therapy


Indirect Hours
o program writing, review and program modifications by the clinical supervisor for the child
o team meetings, transition meetings, meetings/contact with external resources (rehab professionals, daycare staff) six month reviews;
o progress notes, updates etc.;
o parent orientation and/or training;
o ASW orientation and/or training; and
o material development
o agencies must submit monthly self-reports outlining the number of hours of services provided per child.  These reports shall include the total number of direct and indirect hours of service per child, per month by the ASW, Clinical Supervisor and when applicable, a lead /senior therapist, and missed therapy due to the child being unable to attend therapy sessions due to illness, etc. A reconciliation of these reports will be performed quarterly by EECD staff and variances will be followed up with the agency.

I also think I like the flexibility around how (or who) the 20 hours are spent with. These changes seem like it leaves more room for flexibility to provide access to different levels of support based on your child’s individual needs. Currently the requirements are that all 20 hours be delivered by an ASW.

There is also the ability to reconcile these hours. For example, you had 2 days of missed therapy, but your clinical supervisor came out and did some extra work – that is additional made up hours that would end up balancing out the 20 hours.

Payment of staff
One of the letters also implies that payment of staff will not take place for anything under 95% attendance by the client. This again is very vague in the document. I agree that if a worker is just “hanging out” at the centre more often than not and is cleaning toys, this is a waste of taxpayer’s money. It doesn’t suggest that they should not get paid, it’s simply saying that below 95% they would not get paid as part of the direct intervention sum, it’s up to the agency to decide how to do this.

Again, keep in mind, this is a for-profit business, funded largely by our tax dollars. When you put it that way, don’t you want to make sure your money is going to actual therapy and potentially an increase in services? This is designed to hold all agencies accountable at the same level and trying to implement a consistent standard to a service that the government has contracted with private companies to deliver to it’s citizens.

At the end of the day, I do think the 95% attendance record is a bit high and unreasonable, I personally think something more like 90% would be a good goal to strive for. However, I do agree with most of the rest of the proposed changes and think that unfortunately there has been a lot of misinformation which has caused a bit of a panic and scare in the community and it’s a shame that it’s gotten so out of hand.

I also recommend sitting down with your agency. Ask them to explain how many hours they allot for staff time and training and indirect prep as part of the wage they pay staff. Ask them how they reconcile with the province and when/do they for clients missing excessive therapy sessions. Some agencies have some really complex formulas that are beyond my math skills but designed to make sure they can pay their staff properly, train them and still at the end of the day, make a little money.

If you would be interested in having a live meeting, we’re willing to try and coordinate with agencies/government to get some representatives from all parties so we can all talk together – openly. Please advise in the comments or contact us directly either on Facebook or through the email on our About page.

UPDATE June 4: The Charlotte Streets Arts Centre located at 732 Charlotte Street, Fredericton, New Brunswick E3B 1M5, has kindly offered the use of their auditorium for a public information session. It is going to be held on Wednesday June 11, at 2 p.m. We are confirming the list of attendees, but it will include both government and agency representatives and will be a chance for parents to hear direct from these groups and ask questions. We will update the list of attendees as soon as they are confirmed.

Regards,

Rebecca

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8 Comments

  1. Ashley

    I noticed there was no mention of the removal of funding for staff training? What is your opinion on that piece? Also, if you were to cancel more than the allotted 5% wouldn’t the agency have to return the extra funding and in turn be unable to pay that staff person for those hours? I’m not attempting to challenge you, so I hope you don feel as though I am. I am simply trying to understand, as I may have incorrectly interpreted the information I received. What are your thoughts?

    • I definitely am glad you asked this. Training is going to be more thoroughly addressed during what they call “phase 2”. However, going back to the lump sum and the for profit part, it’s up to the agency currently to decide how much training they get and it comes from that budget they are given. As for the missed hours over 5%, the agency can still choose to pay the staff member, it should come from somewhere else in their budget (other grants, bursaries, or the profit they take home). The gov’t says it should not come from hours meant to be used for direct intervention. 5% or less, the government still funds. I agree with that to a point. As I stated above, I think the 95% goal is a tad high. I think something like 90% is more reasonable. It equates to two days per month on average. Again, keep in mind it’s also over a three-month period. Again, missing more than one day a month for a period of three months in a row is when this would come into question – and although it’s not clear, there is room to make up the hours in another month so that it balances back out (again depends on your agencies policies, so this is something you should speak to them about).

  2. I also want to add, while I think there is a gap in training – the government does state some minimum requirements for workers. The agency (business) then needs to go out and recruit people with those skills. If they can’t find them, then it is their job as a business to train the workers they hire, the government should not pay for that.. However, the government in my opinion does need to provide more access to training, or some kind of funding for training not just of workers, but for parents and caregivers too. If more parents understood how therapy was delivered and how to do it, you’d also likely have even higher success ratios because there would be a greater consistency delivered to the child. Everyone involved in the child’s day to day life should be able to deliver therapy, because once the child goes to school, the early intervention therapy and therapists are gone.. Parents either have to pay out of pocket or learn to do it themselves at that point, with little to no qualified support system in place.

  3. Steve Woodin

    Very well written and on par with what I myself found in my own discussions and research. The funding per hour of therapy has not changed, however the overall funding model has been rewritten to enforce accountability. Unfortunately, the guidelines are FAR too vague and left open to the agencies interpretation. They of course are going to take the WORST possible interpretation and implement that.

    I also do not agree with the “clawing back” of the funds. The funds are there to pay for the worker and support staff for the agreed upon amounts of therapy for that duration. The service is there and accessible, if the child/parents are not partaking of that, then it’s not fair to take the money back. The agencies are just going to pass the loss onto the front line staff, and that will render the situation too unstable to be of any use.

    I believe it would be better to review the hours quarterly and if a reduction of hours is deemed appropriate, THEN reduce the amounts go forward. It’s not perfect, but it’s better than the current proposal.

    The lack of input from parents and families, and the sketchy way this was done is unacceptable and unprofessional. The government approved this change on May 7. They tendered letters to parents sometime prior to end of day May 26th, which meant we wouldn’t receive them until June 2 at the earliest, when these new policies were already in place.

    Add to that the fact that they didn’t update their online guidelines until midmorning on June 2, (at 9am it was still showing the OLD guidelines) and this just plain smells bad all around.

    The agencies themselves knew about the change WEEKS prior, but again, did not inform their staff or the families partaking of their services.

    Epic failure on the part of both the agency and the government officials.

    I agree with the WHY it’s being done, I’m actually glad to see some semblance of accountability for government funds….the HOW leaves a lot to be desired, and I truly hope that they can resolve the gaps between the INTENT of these changes, and the WORDING of the guidelines.

    • We agree with you. They did not handle the implementation of these policies very well. They definitely did not give parents enough notice of these changes and I think that is what has caused so much of the fear in these proposed new rules. Many of them do make a lot of sense but this could not be seen until contacting a bunch of other sources including the director of our own center to determine what these changes actually mean moving forward.

      They themselves are still unclear on some aspects of these new guidelines and I honestly feel like they have jumped the gun in implementing these things without having everything in place.

      We are working on finding out more information, not only in regards to phase 2 and how they plan on training their staff but also in regards to funding and how this is allocated to the agencies and then distributed among their staff – Sabrina

  4. I’d also like to add, that the agencies have always supposed to have been reconciling funding this way, it just worked on the honour system. So technically that part about giving money back for services not rendered is not actually a change, it’s just now going to be be enforced and audited, something that wasn’t done before. As Sabrina notes, we are trying to get more clarity on funding and staff payments for indirect hours. It’s a very complex set of formulas. We do have concerns about how they are to get money to pay staff for training and training standards and how that differs – if it does from current standards – as of yet under these new guidelines. That part is still not quite clear to me. And I do know the government has acknowledged training needs to be addressed, but it isn’t clear when they propose to do that. – Rebecca

Trackbacks

  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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