Context
On August 13th, this Tweet from Jay Koblovsky was brought to my attention.
And the quackery continues. Families given 2 days to fill out a survey by a regional provider on what they want for an urgent response in the #OAP. #OntarioAutismProgram #onpoli #autismdoesntendatford pic.twitter.com/pOWLC5EVXL
— Jay Koblovsky (@OntAutismDad) August 13, 2021
This Tweet helped me to realize that the problems that I had observed were in fact provincial issues and led to my discovery of the Urgent Response Services Request for Proposal.
I want to preface this email by stating that I know that you are not responsible for, or possibly even aware of, the issues that I am about to outline; you are likely going to find out about at least some of these issues for the first time as the result of this email. I also know that you are looking into this and I did not want to interfere with your process. However, some additional information has been brought to my attention last night. It is both relevant and concerning. I am going to share said information in this email as I don't know how much of the information has or has not already been included, and because what originally appeared to me to be an agency-specific issue is in fact a provincial issue.
First of all, I discovered last night that an organization in the Central Region is inviting families to take the survey below to provide input on what they would like to see in their implementation of URS. The survey was emailed to a parent by York Support Services Network (who is not apparently part of the Central Region proposal):
https://www.surveymonkey.com/r/MK856P6
Even though I am not in the Central Region, I looked at the survey just to see if there were any similarities between the survey questions and the questions that families were asked during our consultation as mentioned in the previous email. To my chagrin, there were multiple similarities such as questions #1 ("Of the urgent services listed, which aspects would be most important to you?") and #4 ("If you required an urgent response type of service, please indicate what services you might find most helpful?") If you want to view the questions yourself without answering them, you can scroll up and down the page.
As I mentioned previously, these aren't questions that parents should be asked; these are questions that largely should be answered in the process of developing the proposal, with adjustments to be made based on aggregate data gathered annually and pertaining to the services required (not requested) by families. The family of a child who needs urgent response services is in essence being placed in the position of a service navigator at a time when they are at their most vulnerable, and that is an unreasonable expectation.
I also talked to a couple of members of the Implementation Working Group. From what I was told, they were not involved in the process of developing the RFP and did not even know there was one. I ended up finding it here and sending it to them late last night:
https://files.ontario.ca/mccss-regional-based-proposals-guidelines-en-2021-06-21.pdf
There are multiple aspects of this RFP that are concerning. I have listed a few of them below:
- From Page 7: "The OAP URS will not be a 24/7 service. Outside of regular business hours, a lead organization must establish clear communications for families and service providers that describe the organization's response times, which cannot be greater than 2 business days, the parameters of the OAP URS and who should be contacted outside of regular business hours when immediate crisis or emergency support is required.
Immediate crisis/emergency support contacts were not established at any point during the proposal consultation that I could see, if they were even intended to be included with the proposal. This statement also seems to conflict with other parts of the RFP.
Most importantly, there seems to be an attempt to distinguish between "crisis/emergency support" and "urgent support" when "crisis" and "urgency" are essentially synonymous in the minds of families. Most families aren't going to know when an "urgent" response is needed and when a "crisis" response is needed from an MCCSS perspective because there is no difference between those words. They are also not going to be willing to accept a non-24/7 URS implementation, particularly without supports and services being readily accessible outside of business hours. - From Page 9: "All children or youth registered in the OAP with an identified need that could cause harm to themselves, others and/or property may be referred to a lead organization in their MCCSS defined region for OAP urgent response services. A child or youth registered in the OAP may be referred by their family or legal guardian, their OAP care coordinator, a clinician, or other relevant professional supporting the child or youth. Once referred, a family will be contacted by a lead organization within 2 business days. As a next step, the URS intake process, established by the ministry, will be completed with a family to determine if a child or youth requires OAP urgent response services or if alternative services and supports would better meet their needs. If at any time during the URS intake it is determined that a child, youth or family requires emergency or crisis services, the intake will cease and the child, youth or family will be referred to the appropriate local crisis service or hospital emergency room."
What exactly does the "intake process" look like and how much time is it estimated to take? The crisis situation is going to be potentially further exacerbated by a lengthy and/or complex intake process, which in turn leads to reduced quality of outcomes and greater expenses.
We also have the related issue of the length of time families are expected to wait for intake and potential ER referral i.e. the 2 business days. Personally, I would say at most a 24-hour process is acceptable, and that is assuming that 1) there is in fact a clear delineation between "urgent" and "crisis", and 2) that families whose situation deteriorates rapidly are aware of immediate crisis intervention supports and can easily access them. There seems to be a misconception that an autistic child or youth whose issues have escalated to the point where urgent supports are required will remain in a holding pattern without further escalation, and this is an extremely dangerous line of thinking. - The slides on Pages 4 and 10 are slides that were presented to us on July 26. When examined with the additional context of the 2-business day timeline, Page 10 provides a visual illustration of just how flawed the URS process is.
- Page 11 states:
"Each MCCSS defined region will have one or more lead organizations to manage, deliver and coordinate the delivery of the OAP URS in collaboration and partnership with local service providers and professionals.
A lead organization(s) must be an existing Coordinating Agency (see Appendix D: Coordinating Agencies) with demonstrated experience coordinating family-centred services for children and youth with multiple and complex special needs."
Appendix D lists the organizations that were part of the West Region proposal consultation on July 26th, along with organizations from the other regions; the result is a documented closed tender process. It is also a process in which organizations from the West Region (e.g. Community Living, Hamilton Health Sciences, REACH, Bethesda, Six Nations of the Grand River) appear to have been pre-emptively disqualified from participation despite having the prerequisite coordination experience. I have spoken with multiple representatives from these organizations who were not even aware that URS was in the proposal stage until they were invited to the organization-specific consultations, and thus had no idea what was transpiring until they attended the July 27th session intended for service providers.
This process is in conflict with best practices as it pertains to product and service procurement i.e. the requirement to acquire three proposals/quotes where and when possible. Ignoring this protocol leads to reduced spending efficacy and more importantly suboptimal outcomes for autistic children and youth.
As the father of an autistic child and as someone who is regularly asked for advice on services and supports, this is significantly disturbing. I have serious concerns about injury and/or death arising from this potential URS implementation, both of the children/youth themselves and any of their caregivers or other loved ones.
I will be making this public knowledge if the URS implementation is not significantly altered soon; I greatly prefer not to do this as I do not wish to put families of autistic children through additional emotional disturbance, but in this case, transparency is essential in order to help families avoid future harm.
I do believe that this can be fixed and a better URS implementation can be developed. It would require the following steps:
- Stop the current tender process and implementation immediately.
- Develop a new, revised RFP in collaboration with the Implementation Working Group, and ensure that the RFP is in line with their recommendations.
- Replace the current closed tender process with an open tender process.
- Mandate that any successful tender must indicate both public and service provider/subcontractor consultation, with a publicly-available summary of the items discussed along with anonymized feedback from those consulted.
I want to reiterate that I am cognizant of the fact that you are not responsible for the URS implementation, and I hope that you understand that I am doing this strictly to avoid unnecessary suffering on the part of children and their families.
MCCSS Response
No reponse has been received at this time.