Context/Clarity
I was not aware of the URS request for proposal (RFP) at the time, and the comments and apparent lack of expertise on the part of the coordinating agencies led me to believe that this was a lack of understanding on the part of the agencies involved, and not symptomatic of a larger issue involving the request for proposal process. I did not receive a copy of the RFP until August 13, 2021.
I am also keeping the name of the MCCSS employee anonymous because I believe that the employee is trying to help resolve this situation. I don't believe that she was fully aware of the situation, based on her response below.
My Email
Hi,
First of all, I just wanted to say that I'm glad that Urgent Response Services (URS) is now in the "request for proposal" stage. As I wrote to you previously, this is an important and underappreciated aspect of the OAP and one that, if implemented correctly, will help a number of families out of crisis/dangerous situations.
The key phrase above is "if implemented correctly". I really don't want to write this email; however, I have a real concern that either the URS implementation as proposed by MCCSS or the interpretation of said implementation by a potentially successful bidder will cause greater harm to families that are already in a crisis situation. I just want to state that these concerns have nothing to do with my son and our family situation; we're far removed from crisis right now and hopefully we can stay that way. This is strictly about other children and their families.
I was invited to a URS consultation session organized by two potential "lead agencies" for the West region: Contact Brant and Hotel-Dieu. I attended it yesterday evening. I don't have a working familiarity with either agency because both agencies operate outside of the City of Hamilton, but I'm sure they serve their clients well and I don't want to disparage them in any way. With, they have created a process that is both confusing and adds a layer of bureaucracy that is potentially very harmful.
The general pathway that they suggested to us is as follows. They did show us a more detailed "Service Delivery Flow" slide/flowchart from a PowerPoint deck, but I don't have access to it right now so I'll mention it below:
- A family is either referred to or contacts one of the local Coordinated Service Planning agencies under the larger lead agency umbrella.
- Agencies are "mandated" to undergo an intake process, which they will do within "2 days". I put the latter in quotes, because it occurred to me during the consultation session that "2 days" could potentially mean "2 business days". "2 business days" was in fact the intended interpretation, as I learned when I asked the question.
- URS services are to be provided for up to 12 weeks via subcontracted "service delivery partners" under the "Service Delivery Flow" flowchart, with ongoing supports/strategies to be arranged on a sliding basis after the 12-week window (or potentially during; this part confused me a bit).
As I mentioned, this proposed workflow is concerning and disturbing to me, and could potentially do some significant harm to autistic children and families in crisis.
First of all, there's the issue of the interpretation of "urgent" in "Urgent Response Services". A family with a child with say suicidal ideation or violent tendencies may simply not be able to wait 2 business days, nor should they have to. I pointed out during the session that "2 business days" will in many cases mean significantly more than 48 hours if a referral is made immediately before a weekend or holiday. The example that I cited to them, and that I'll cite to you as well, is the Christmas holiday. Imagine the scenario of a family whose child goes into crisis on December 24 and self-refers; this is quite likely due to the sensory, transition, and other issues associated with the Christmas holiday. If we use the "2 business day" rationale, that family may not even receive an intake callback until potentially December 29-30. Consider the calendar year 2020, in which Christmas was on a Saturday. Saturday/Sunday are statutory holidays; however, because said holidays land on a weekend, the "makeup days" are the following Monday-Tuesday, or the 27th and 28th respectively. The following two business days are December 29-30. This is still a problem this year as Christmas lands on a Sunday, albeit to a lesser extent. As you can clearly see, this was a major issue with their proposal, and when I pointed it out they made it quite obvious that they hadn't even considered a "non-business-day" scenario.
Second, we have the interpretation of "urgent" itself. A few of us pointed out that the definition of "urgent" in many families' minds is "as close to immediate as possible". They would expect a triage-style response in a matter of hours if not minutes, and justifiably so. Again, the families that would need URS are in crisis and I'm not sure the two lead agencies fully comprehend what that means from a family perspective.
Third, there's the issue of unnecessary bureaucracy. A potential pathway exists, and is quite likely to occur under the proposed scenario, whereby a service provider could refer a family to a local URS agency for an intake; the URS agency could in turn refer the family back to the provider for delivery of services. It makes far more sense from both a cost perspective and more importantly a humanitarian perspective to have the original provider do an intake immediately and prepare service delivery as soon as possible thereafter, with referrals to other providers only when necessary i.e. when the original provider can't deliver needed services. We also need to consider the typical mindset of a family whose child is in crisis; they're going to call 911, they're going to take their child to the hospital, and they're going to perform other actions consistent with those of a family dealing with an urgent situation. Again, this is understandable and justified.
Fourth, there's the issue of a pair of lead organizations that seem to have gotten themselves in over their heads due to lack of knowledge or experience in service provision. Let's compare the model behind this proposal to the model behind the successful proposals for Early Years Intervention/Education Transition services. The successful candidates were service providers, either alone or in partnership with other providers depending on the circumstances. This makes sense because the providers have the experience, they have the infrastructure, and in many cases they have the knowledge of the individual children utilizing these services. The combination of these factors leads to greater efficacy of service.
This is one of the reasons that I said that the lead organizations are not suited to lead this project. They did take a positive step in terms of developing this proposal by consulting with both caregivers and providers, and it is appreciated; it should be standard practice for anyone submitting a proposal of this nature to consult with those potentially affected by its implementation in the event that those affected bring items to a lead organization's attention that hadn't been considered. This also happened during the Early Years Intervention/Education Transition service proposal developments, and improvements were made as a result. If anything, MCCSS should make this a requirement for any future RFPs.
With all of that said, the consultation process is where many of the issues arose, and every parent of the eight that participated had managed to point something out that the lead agencies hadn't previously considered. This is highly unusual; even during a process where the parents that are included are actively engaged and informed, it's more normal for a few parents to be actively involved and everyone else to add nothing. The disturbing aspect of the comments being made and accepted is that they were relatively mundane comments, and things of a basic/fundamental nature to a service provider with some experience would consider:
- The lead agencies asked us which services and supports would help families in crisis. One parent quite correctly pointed out that because autism is a spectrum and that crises vary, there's no universal answer to that question. Another parent pointed out that many parents in crisis aren't always engaged or "up to date" on various services and supports, and may not even know what's available. I pointed out that in that moment, a family isn't thinking rationally and what they need more than anything is a calm, clear-headed person to hold their hand and guide them to the needed supports that will guide them through the crisis. None of this was considered.
- The lead agencies asked us how we'd prefer to contact them for self-referral in a way that indicated that they hadn't considered any possible options. I had to be the one to tell them to at least consider phone, text, and email.
- Another parent pointed out that 911 could be a potential source of referrals. The only organization that the lead agencies had previously considered as a source of referrals was COAST Hamilton.
- Another parent pointed out that many of these crises occur with some regularity and can be based on seasonal and other environmental factors. The parent asked how mitigation strategies could be implemented after the first crisis was dealt with in order to mitigate the impacts of a second crisis and ideally avoid a repeat of said crisis. Their answer was in essence to wait until the second crisis happened and to repeat the steps required to get through the first crisis. This is incredibly harmful and I don't think the parent was happy with the response; I know I certainly wasn't.
- The definition of "urgent" itself. Every parent said variants of the same theme i.e. that "urgent" and "crisis" are synonymous, and that a family in a crisis situation expects and requires a certain triage mentality. Their answer was to "make it more clear what this urgent response service is for, because we've heard that a lot from parents". It didn't seem to occur to anyone involved as to why they "heard that a lot from parents".
Again, these are all issues that service providers would have encountered before, with the possible exception of contacting referral agencies. This means that the consultation with caregivers served not as a means to augment or correct issues with a proposal, but to help develop it.
One other thing that I thought of afterward was the nature of both the parents and the lead agency employees. For lack of a better term, it was a "white crowd" (including me, in fairness). I didn't see anyone who was of an Indigenous background in particular. This is a concern because Indigenous people have disproportionately suffered the effects of the pandemic, and that includes their mental health; since the West region includes Six Nations, I'm hoping this is something that can be addressed. This may be have addressed in the provider sessions that are scheduled to take place today, and I hope that Six Nations Health Services was invited and able to participate, but given the way that our session was handled I'm not confident that this is the case.
I would suggest that potential URS providers become familiar with the story of Cindy and Justin Alves as well. Justin is a 16-year-old autistic male who found himself in a severe crisis situation in the months preceding the COVID-19 pandemic, and Cindy (his mother) was forced to act as her son's system navigator and develop a solution entirely on her own. Their story would serve as a real-world exemplar of the types of services and coordination that are necessary; while their particular circumstances and solution are unique, the general concepts behind said circumstances and solution are not. It was the pandemic itself and the sudden withdrawal of school services that led Cindy to realize that the school environment itself was a trigger for Justin, one that he couldn't handle. She ended up developing a plan under which Justin attends a day program 3 days per week and she unschools him for the other two weekdays. As you can imagine, this causes significant expense to the family, both financial and in Cindy's case her own mental health. You can read more about their story and understand the full context at https://www.facebook.com/lookingatlifethroughdifferentlenses .
I recognize that URS proposal submissions are intended to be made in fairly short order and that there are tight deadlines involved. I also recognize that there are children in a great deal of crisis, and they need help as soon as possible. However, if this particular proposal is accepted, children and their families will be put in greater jeopardy. I don't know whether MCCSS wanted service providers to be excluded from URS proposal submissions for reasons of impartiality; whether this is a misinterpretation on the part of the lead agencies; or whether there's another issue/reason that I haven't considered. I do know from having talked to members of the OAP Advisory Panel and Implementation Working Group that this is not what they intended, and it needs to be corrected as soon as possible before someone gets hurt. Thank you.
MCCSS Response (received August 5th)
Hi Adam,
My apologies! I have been doing some general URS follow up as you are not the only one I have heard from! So I followed up with the lead organizations earlier this week and will respond to you shortly in more detail.