Spectrum Warriors: Life Through The Autism Spectrum

Q & A on Autism Funding in New Brunswick

If you have been following along with us over the past 2 weeks you probably have already read both of Rebecca’s posts on the new standards for funding for Autism Early Intervention Services. If not, I urge you to read them here and here. Rebecca spent hours speaking with Jeff den Otter, EECD program advisor, and with Danielle Pelletier, clinical director of Autism Intervention Services Fredericton, to make sure that she understood everything that the EECD document was outlining, so that we could best respond to the questions we were receiving from concerned parents, and also so that we could fully understand it ourselves. The knowledge she obtained helped to explain a lot of the good changes the new standard is trying to implement, but in doing so it also helped highlight the many gaps in the new policy, which we felt – along with many other parents – needed to be addressed. This led Rebecca and Lindsay Farrell (an active autism advocate and parent in our community) to organize an information session so that we, as parents, could be the voice of the community and ask the questions that should have been asked before the standards document ever became finalized.

We invited all parents in the community to join us at the session where den Otter, Nicole Gervais (Executive Director of EECD), and Pelletier would attempt to answer our questions and acknowledge our concerns. Den Otter and Gervais represent the governmental agency that helped to establish the new standards that agencies will need to be held to. After introductions were made Gervais took the floor indicating: “There are no cuts to services. The 20 hours are still there, still available and we strongly encourage that you take full advantage of these services; it is there for you and for your child. We know that in order to impact, we need to have that intensity for your child to go to school and reach their full potential. The funding for the 20 hours have not changed, it has always been the same. As has the training requirements that are outlined in the standards. I believe that New Brunswick has the best Preschool program in the country. We want to maintain that because we see the impact that it has on the lives of these children and we want to continue that. So everything we are doing and planning is to maintain that and increase that quality. I commit to you today that what we are building is to support your child and you as a family.”

Why the new standards then, and where did this all begin?

The program had been in place for the last 8 years, but after receiving numerous calls from around the province from concerned parents indicating that they were not receiving the full 20 hours of intervention that were promised to them, that caught the department’s attention. “When you get one complaint, ok, and when you get two you say ok,” Gervais said. “But once you start receiving a few you say well may be there is something there.” 

This led them to run an audit, and to go to the agencies to see for themselves what was happening and how things were being run. What we need to understand here, and what Rebecca has said in previous posts, is that these agencies are for-profit businesses that, although funded by the government, are free to make their own decisions about the way funds are distributed and the business models/practices used. However, it was always mandated that 20 hours of direct services be given as this is what the funding has always been based on.

The audit that we did confirmed that there were a number of children who were not receiving the 20 hours that were being purchased by the government for your child on your behalf,” Gervais explained. “So we thought, how can we do this, because this program has more than doubled since 2008, and in the last 4 years it has increased by 64%. So it is not that we are cutting the funding, but we want to make sure that each dollar we are spending is going to your child.” 

We all agree that our children should get the 20 hours that are being paid for them to get and that agencies should be accountable for this, but I think that focusing the funding only on direct hours is incorrect. The ASW that provided the 20 hours of face-to-face time is merely a small part of a greater team whose portion is primarily indirect. Should funding be solely based on the direct hours received or should funding be subdivided into a portion for each?

The second part of the revised standard is to allow the parent to decide how many hours – up to the mandated 20 hours – that you as a family can commit to. In the past it has always been that 20 hours is what you are getting and that is what we are paying for. There was no thought on what can the parents actually commit to. “Twenty hours a week for 52 weeks for 2 – 3 years is a big commitment,” Gervais said. “I want the best for my child, but sometimes it is not possible for me to bring my child for 4 hours, 5 days a week for 52 weeks until my child goes to school. So we are making it possible for you to have a bigger place in this model. So if for this time you can only do 4 days, then you have an agreement that that is what you are going to get. So in 2 months if you decide that you can now do the 20 hours a week, then the agency and the government will both honour that and your child will receive the 20 hours.”

While in theory that sounds great, there are still concerns in this type of model, especially from an agency standpoint. If a family decides that they can only do 15 hours a week, do you hire someone part time? What if a family that was already receiving 20 hours decides they now only want 15 hours: do you then not pay that staff for the 5 hours they would have been paid for?  Or what if after you carefully balanced the number of hours families can do against the number of staff you have, a family says they can now increase from 15-20 hours. You don’t have anyone available to do those extra 5 hours per week, so then what? Do you hire and train for just 5 hours per week? That will take time, it’s not as if they can just turn the service offering on an off like a tap.

I understand that the government wants to pay for the hours serviced but I think that from an agency standpoint and from an employee standpoint that this may make it very difficult for the agencies to keep their staff in an environment that already sees a large turnover.

We have met with the agencies last week and have made a few changes based on their concerns,” Gervais indicated. She did not, however, go over any of those changes but merely indicated these changes would not affect the client in any way, only the agencies. She then went on to call to the parents for their voice in this matter: “One of the things that we have heard in the last two weeks is where are the parents’ voice? You are talking about my child. You’re making all these decisions, all of these changes but you have never asked me. SO I am making a commitment today that from here until October we will hear your voice. We are not sure if this will be through a questionnaire or town-hall meeting, but we will hear your voice.” 

Den Otter then took the stage to indicate that the program standards are there to show a model of service and what is actually offered. They are a boundary for us to follow, a guideline to all of us to hold the agency accountable to these standards. He indicated that when he started to get calls from panicked parents who called him after reading the letters they received, that he was taken aback. There were a few areas that parents seemed most concerned about, one being the new service letter agreement: “The letter says first of all that there will be a new service level agreement which clarifies your responsibility as parents and the agencies responsibility to you,” he explained. “We used to just sign a funding agreement indicating how many hours you signed up for and there was nothing else in it.”

We think the new service letter agreement makes sense. You are signing up for a service and this holds the agency accountable to what you, the parent of the client, should receive. It also puts a bit of responsibility on the parent to be well aware of the hours you are committing to for service.

The second most concerning part of the letter that parents wanted answers to was in regards to attendance: “I‘ve always said this, our standards said we give 20 hours whether you need it or not, so we funded 20 hours regardless of if people took it or not, so there was a substantial amount of money given for visits that were not kept.” 

Den Otter indicated that although the government will still advocate for 20 hours a week, they are now allowing parents to have more flexibility with this, which Gervais stressed as well. The third-biggest issue was that parents were told that on the fourth missed visit that they would have therapy cut off or suspended.

This is untrue,” den Otter clarified. “We would never do that; that is not what we are about. So the behind-the-scenes work was working with people who wondered how they would manage their agency with a little tighter set of controls. We will review that and we will adjust as needed, but we have to remember we don’t want to be spending bags of money for lack of service. We also don’t want to be so tight that it becomes impossible for agencies to provide their services. There is a balance there.”  He went on to say that services to your child will not be removed for a child who is sick – they’ll find ways of working around that. There is flexibility, he said, and they will look at things case by case. However, as we have pointed out – there’s absolutely nothing in the document that speaks to the fact that medical appointments or illnesses could be “exceptions” to the rule.

Another misconception is that funding was changing. Den Otter went on to say: “No, there are no cuts. That is not true.” Since the program started, funding was about 2 million dollars and the funding now is around 15 million. Why are current changes happening? “We want to shorten wait lists and get kids in as quickly as possible. They are happening so that we can make sure kids are receiving the hours they are supposed to receive.

The audit showed that in some agencies children were only getting 80% of the services they were supposed to be receiving, which is why they went down this road. In terms of the 95% target, den Otter indicated that, “The 95% attendance plus two weeks of vacation, this is a number we felt was attainable over time. This means we are giving up 5% of the budget for every child. Instead of putting out a blanket 90%, we would rather make adjustments based on an individual case.”

He also indicated that lost hours can be recouped with extra sessions over the next three months. The thing to note here is that if you miss more than 95% you should not immediately lose service if you have valid reasons for missing time. “Parents do not have control over their kids being sick or medical appointments,” den Otter said. “This is out of their control. We will find ways to work that out with the agencies.”

In terms of employee pay and benefits, den Otter indicated – as Rebecca clearly outlines in her previous posts – is that this is entirely up to the agencies. “Our arrangement with our 6 agencies is a purchase of service. We will give you this much money in exchange of 20 hours of face time. The assumption is that this money will cover 20 hours of direct intervention and clinical support time and to an extent should cover when staff are sick or weather.

He indicated that they never told agencies how much should go to each part of their business. There was no outline for this and they see now that many agencies follow very different models but that the responsibility of paying staff is entirely on the agency. They are not prepared to go in and dictate how agencies should be doing this.

Den Otter then briefly touched on training. In the Standards doc, it does show that the government expects staff to come in with a certain amount of knowledge or training (which has not changed). He indicated that most agencies have an internal training component and that the EECD is also working on an internal training program, which will allow them to standardize training across the province. They have a pilot program that is already in the school systems, which is doing well,  but they are still working on the preschool and agency component to this program. They would love to be able to open this training up to parents as well.

Again, this all sounds great, but what was never answered was how agencies should be paying for the training for new staff coming in currently. After going over my notes I emailed den Otter to get more clarification, but unfortunately there really doesn’t seem to be a good answer here: “We are working to sort out the training question given the issues that some agencies have raised and we will ensure that the agencies have the opportunity, and will monitor to ensure that all staff working with children are trained and supervised.”

Prior to the changes our local agency was using the second month of funding in order to pay their staff during the training period (with the first month paying for evaluations and diagnosis confirmation, and also being used as time to recruit staff). However in the new model, funding is 100% based on direct hours. No direct hours, no funding. During the first month that a worker starts with an agency they will not be given direct hours and so cannot longer use the (second) month of funding to pay for this. It is clear that not only is this a concern for us as parents, but it is also a concern with the agencies.

Pelletier, clinical director of Autism Intervention Services Fredericton, our local agency, then took the stage to explain a little bit about how she runs her company. Keep in mind, she is one of 6 agencies and not all agencies have the same models or practices, and and she couldn’t speak for the other 5 agencies. Our meeting was organized for local parents, so Pelletier spoke to issues from a local agency perspective and not as a representative of all agencies.

I still feel like I have questions and I speak with Jeff and Nicole often,” Pelletier explained. Currently nothing at her agency is going to change for now (the next three months). There are a lot of details that she needs to manage, but she has always reconciled hours.: at the end of the child’s therapy she always gave back money not used for hours (not to a 95% standard, but to some degree). However she felt that doing this on a 3-month period may make this “difficult” for her as a business.

She said she has been trying to push to the government that she does not want to feel pressured to provide hours before she feels her staff is ready. She wants to always make sure her workers are well trained before she offers any services to a client. “I do have some concerns around training, not only when they first start, but ongoing training. I did express that this is a job that requires flexibility. In the past if a client calls in sick we would pay the worker and have them overlap or do indirect work, but I think we might need to be tighter with that and that is where the 95% will come into play.

At Pelletier’s center, employees get 5 paid sick days, which does come out of the funding used for the client and any time an employee calls in sick above these 5 days has always been unpaid and she does not feel that this will change. One of her concerns is in regards to snow days. Currently she closes her center whenever schools are closed for the safety of her staff. Many of the ASW’s must drive an hour or more to reach their client. She does not feel comfortable sending her staff out on roads that may be dangerous, to a person’s house where they may not have had time to shovel or plow out their driveways etc… Pelletier indicated that she is still going to be working along with the government to go over some of the concerns that she has and hopes that they will be worked out over the next few months.She has asked if they could pilot this and gather data across the province and then reevaluate this in a few months.

Q&A:

Q: Is there an ability to have a pilot? Is there a timeline for changes?

A: Nicole Gervais indicated that no they would not call this a pilot but that they are taking the agencies’ concerns seriously and they will monitor and evaluate this. She indicated that the first quarter will be the most telling as to whether this will or will not work, but also noted that it could take up to 6 months of data to get a good reading.

Jeff answered that yes we do need to look at and we do need to review, but they want agencies to take this seriously and try to adjust to new practices before deciding this will not work.

Q: Currently you are holding agencies to 20 hours but you have no control on whether they truly are doing that. You trust that they will be forthcoming so when will we see actual accountability by the agencies? Will there be a streamlined consistent process across the province?

A: Gervais answered that the changes right now are only geared to funding, one penny in one penny out. Phase 2 will be geared towards looking at the clinical work that is happening in the agencies in hopes to do just that. They hope to look at more parent training, they want to monitor more closely the results in the children and the impact that it has, but currently there is no firm timeline as to when phase two will be done, but Gervais is hoping that by April 1st next year, this clinical piece will also be standardized.

Q: Is each agency currently assigned a case manager or external auditor to hold them accountable?

A: Firstly, they have been assigned a spreadsheet that all agencies must fill out so that government can compare from agency to agency. They have assigned one person that will look at these spreadsheets monthly so that they can see how things are going and to provide support to the agencies.

Q: Within the 20 hours a week what do those dollars go to?

A: The monthly amount is based on the face-to-face time, the material preparation etc… (The EECD) tracks direct and indirect time as the funding is based on the 20 hours. The money we are providing agencies is 20 hours of intervention and all expenses that go along with those 20 hours.

Q: Should the standards have been written in a language that was more geared to the parents and the community?

A: Although the standards are made public, they are meant primarily for the agencies and this is what has lead to a lot of the confusion with some of the policies even though many have actually not changed.

Q: So when you let the parents have a voice are you going to take our concerns seriously and make changes based on this?

A: Gervais indicated that the way they will do this is if there is a global concern over something then yes, they will review this. But if there is just one voice saying they don’t like this piece, then no they would not change that. They will also look at the parents’ ideas for future changes as well to help build the program and make it better

Q: Why is this punishing the children by reducing the their therapy time when the parents or agency meet a challenge. Is it not better to help the parents with delivery and make this the same across the province?

A: The child’s therapy times are not being reduced unless the parents indicate that they can not meet the 20 hours and agree to a reduced schedule. The 20 hours is there for all children; this is not changing.

Q: If you have a reduced schedule and want to increase the hours later on can we do this? Is there a wait time for this? Will ASWs not have to be reassigned?

A: Pelletier answered that she personally would need 2 months to be able to recommit to 20 hours, so if a client wants to restart at 20 hours next week this would not be possible. The agencies will need advanced notice and this is something she has mentioned to the government.

Q: At AIS if a parent asks for training they will try to give parent training on ABA to help the parent with consistency, but many other agencies do not seem to offer this. What about funding for parent training? 

A: Der Otter indicated that with the internal training they are working on, they would love to eventually see a parent component to this. Currently however this is not in the model.

Q: How do you decide how much money you will take from agencies when clients do not meet the 95% attendance? What portion of the funds will you take away from the agency, a percentage of the entire fund or is it a % of just what is being used for direct hours?

A: Der Otter and and Gervais said that it will be the entire hourly amount for each hour missed. Pelletier stressed there is a concern in regards to this, but that she will not be able to tell how much of a concern it is until they see how it plays out over the next few months.

Q: Am I putting my worker at risk of getting paid if I cancel more the 95%?

A: Pelletier answered that she will not know until 3 months after the model is in place. She does not see herself not paying her staff, but if she gets in the red due to too many cancellations then she does not know. Only time will tell.

Q: Is there anything that will change right now at AIS? Is it business as usually?

A: Pelletier indicated that she feels it will put pressure on scheduling, but she feels she needs to take data on everything and see where it will lead. Gervais also indicated they may need to extend this data period to 6 months, especially where we are going into summer. Pelletier maintained that her plan is business as usual and to maintain quality. As for other agencies this is something that agencies will need to determine independently as each of their models are different.

Q: Do agencies meet? Do you share resources?

A: Danielle explained that no, agencies do not meet on a regular basis and most agencies would already have a really good bank of resources. Where she feels agencies could learn from each other is in regards to each agency’s internal practices and to allow for more consistency across the board.

Overall the information session was a success and many questions were answered, however it also showed there are large holes that still need to be worked out. One of the major holes we see stems from the very beginning when these agencies went into practice. There is no consistency. Each agency was given the same amount of funds, but it was up to each agency to determine how those funds would be handled to pay for the direct and indirect therapy hours, plus the operational costs they had.

There was no business model that all agencies needed to follow and I think this is why some agencies are going to have a harder time meeting the new standards and come out on top. I think that if all agencies had been following the same business model, paying staff the same way all along that these changes would be much less noticeable. This is not to say our agency is better than your agency; I’m sure our agency also has things they can improve. What we are saying, however, is that if all agencies followed the same model, perhaps there would have been less room for varying interpretations by each agency.

I also feel that the government has dropped the ball here in terms of training and has not clearly outlined how agencies will cover that cost. As I stated above, funding is only given based on so many hours of face-to-face time, but during a training period the new employee would have no face to face time with the client. In the past agencies like AIS used the second month of funding to pay for this, but in the new standards that would no longer be possible. Having Pelletier also indicate some concern over this makes me even more concerned over how this will occur. If agencies do not have the funds to train new staff it will mean longer wait lists for new clients as they wait for current clients to complete their therapy before starting someone new. That is unacceptable. Training of staff should have been clearly outlined in the document and if anything, there should be separate funding for training that is not part of the direct funding for the child, at least until the internal pilot that den Otter has indicated is in the works is actually available.

I personally do see some good points in the new standards, but think these new demands will be hard for some agencies to meet. If for example you have been paying your staff maybe more than you should have been, and have less banked away, then you may be in for a harsh reality. As parents, we will definitely feel that the pressure is on us for our workers getting paid or not and that is only one more thing to add to an already full plate for many of us.

My son rarely misses therapy; I think the center has cancelled on us more often then we have ever cancelled, so I know we fall closer to the 95% or higher bracket of attendance. But I have only one child. I can see where a parent with multiple children who might receive therapy at home, for instance, may have a much harder time meeting this 95% due to doctors appointments or illnesses for any of their children. Knowing that our hours won’t be cut if we go over the 5% that is allowed does relieve some stress, but knowing that when we do go over that our worker may not get paid or that we are putting the agency in jeopardy financially makes me a little uneasy.

Personally I think that before something this strict was implemented that the government should have first looked at having a consistent business model across all agencies. They should have first and foremost outlined how the agencies would pay for training and then they should have outlined the standards agencies are to be held accountable to once the rest was in place. I understand the need to hold the agencies accountable for the services being provided and the hours being given to the children, but I think that there would have been a much better, gentler approach to making these changes.

Rebecca and I will continue to be on top of this as it progresses but I hope that they hold true to their word that they will re evaluate this with agencies over the next few months and that they are working with the agencies to help with their concerns. We will, however, need to see proof of that commitment before we are fully convinced that services in New Brunswick are not in jeopardy.

Sabrina

 

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6 Comments

  1. Dan White

    Do you have a date for a meeting in Saint John??

    • No, we have not heard of any dates for other regions. We’d encourage you to contact the EECD (Jeff) to find out if they have plans. If we do hear of anything, we’ll let you know.

  2. Steve Woodin

    I just spoke with Josee Nadeau who works for Nicole Gervais. There is a
    office (Off Millidge Ave.) It was indicated to me there should be information forthcoming prior to that.

    • Steve Woodin

      Sorry..there is a MEETING scheduled for Saint John for June 24th at 630pm.

      • Thanks for sharing this with us.

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