Urgent Problems with Urgent Response Services

The Ontario Autism Program (OAP) includes a long-awaited Urgent Response Services (URS) mechanism to enable families to access time-limited supports and services in times of crisis. However, a flawed implementation has the potential to cause injury and/or death to autistic children and youth and their families alike.

Problems

The Ministry of Community, Children, and Social Services (MCCSS) has developed a URS framework and a corresponding Request for Proposal (RFP). The PDF of the RFP is linked below.

Urgent Response Services Proposal PDF. Note: this may download the proposal onto your device.

Some of the issues are contained with the RFP itself; some are external. This is also by no means a comprehensive list of issues; there may be others that I haven't discovered yet.

The MCCSS-Designed URS Process Flow

MCCSS has provided a flowchart intended to outline the URC process on Page 10 of the RFP document. Due to technical issues, it is difficult to extract a copy of said flowchart. The image below is the best that I was able to do given the circumstances.

Resizing Images

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Figure 1: Flowchart extracted from Page 10 of the MCCSS Urgent Response Services proposal outlining the proposed URS workflow

This flowchart will be referenced at various points throughout this page as a means of visually illustrating certain problems with the URS proposal proces.

Problem #1: Urgent Situations, Non-Urgent Response Times

The primary issue with the URS proposal is the length of time in which providers are given to respond. The following paragraph can be found on Page 7 of the proposal, with bold text added by me for emphasis:

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.

In other words, the family of a child who requires URS is being asked to wait for two business days to receive an urgent response from an organization that only operates during regular business hours. This is not acceptable. No consideration whatsoever has been given to the probability that a family will find themselves in an urgent situation immediately prior to a weekend and/or a holiday, and thus face extended wait times of 4-6 days to access URS.

As a 13-year-old autistic self-advocate named Jax put it upon hearing of this proposal for the first time:

The Mental Health of a CHILD should NOT be on hold for 2 Business Days. The saying "Children are our Future" applies here. There is NO FUTURE for them if we fail to stop this!

Problem #2: The Emergency Room Issue

A flow exists within the flowchart in which a child will have to wait 2 business days, or 2-6 days, to access the emergency room. This flow is highlighted below:

Figure 2: Flowchart extracted from Page 10 of the MCCSS Urgent Response Services proposal with a flawed emergency room workflow highlighted

This is verified on Page 9 of the RFP:

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.

In other words, there is a distinct possibility that a family with a child that requires emergency room services and without being aware of said requirement will be made to wait for 2-6 days to be given a referral to the emergency room. This is also unacceptable, and extremely dangerous.

One must also bear in mind the list of "High Risk Factors" as defined by MCCSS that would render a child eligible for URS:

All of these factors represent escalating behaviours, and without timely intervention can and will put families into crisis situations. 2-6 days does not constitute timely intervention. 12-24 hours would be a reasonable timeframe given the circumstances.

Problem #3: No Obvious Flow for Providers to Refer Children to Emergency Services

The flowchart illustrates another issue within the proposed URS flow i.e. that there is no apparent way for a care coordinator or core services clinical provider to refer a child to emergency services.

Figure 3: Flowchart extracted from Page 10 of the MCCSS Urgent Response Services proposal with a flawed provider workflow highlighted

One would hope that a provider or care coordinator would have the ability and knowledge to bypass this workflow and refer a child to emergency services as applicable; however, this cannot be assumed and must be explicitly stated to avoid harm.

There is also the issue of an escalating situation requiring emergency intervention during the aforementioned waiting period; there is no flow explicitly connecting the child to emergency services.

It is possible that this is an oversight on the part of MCCSS and that the flow can be modified accordingly; however, this flowchart was presented to those of us who have been consulted for our feedback during the consultation sessions without acknowledgement of the flaws within, and one cannot assume that the organizations involved are aware of said flaws.

Problem #4: Closed Tender Bidding Process

From Page 11 of the URS RFP:

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 on Page 22 outlines the "Coordinating Agencies". One agency has been selected for each of the 34 MCCSS-defined service delivery areas, and multiple organizations service multiple delivery areas.

The selection process has shut out multiple community organizations who may be better able to coordinate children's services and by extension deliver better outcomes for autistic children. Several children's treatment centres, community living organizations, and others have been excluded from the bidding process. I've spoken with multiple organizations who have informed me that they were unaware of the RFP until being contacted by the lead organizations and are justifiably upset at their exclusion; it should be noted that lead organizations are collaborating with the other regional coordinating agencies to submit a single proposal for each MCCSS defined region.

This is not intended to denigrate or cast aspersions on any of the coordinating agencies, but merely to point out that alternatives do not appear to have been considered.

Toronto Note

The only organization that appears to have been considered as a "coordinating agency" is Surrey Place. The population of Toronto as a whole would indicate the need for multiple agencies serving multiple areas. A simple division among Toronto's boroughs would shorten timelines and allow for more efficacious service.

Problem #5: Unilateral URS Creation Process

URS and the associated RFP were developed by MCCSS without family input; I have also been informed that the OAP Implementation Working Group (IWG) was not involved and that their recommendations were ignored. The other problems in this document could have been avoided had families and/or the IWG been made aware of these developments and been given an opportunity to critique them first.

Problem #6: Lack of Knowledge and Experience

At least some of the agencies involved have demonstrated a lack of knowledge and experience in terms of the very goal that URS is intended to address i.e. "coordinating family-centred services for children and youth with multiple and complex special needs". Some of the questions that families have been asked include:

These are questions that an experienced service coordination provider would already know the answers to for the most part, and there is no valid reason that an agency involved in this process should be asking these questions.

The Presumption of Rational Thought

The questions being asked by the coordinating agencies seem to presume that people are going to be able to think and act rationally when children are in need of urgent services. I had to point out to the West Region agencies that the majority of families in this position understandably aren't in a rational state of mind and are simply looking for someone to hold their hands, navigate them through the situation by coordinating services, and getting them to the point where they can think calmly again.

Solution

All of the problems listed above and any others related to this process have the same solution. These steps will be reiterated in the second email below. The steps are as follows:

  1. Stop the current tender process and implementation immediately.
  2. Develop a new, revised RFP in collaboration with the Implementation Working Group, and ensure that the RFP is in line with their recommendations.
  3. Replace the current closed tender process with an open tender process.
  4. 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.

MCCSS Emails

I have made MCCSS aware of these issues, and I have been informed that many other people have done likewise. My emails and MCCSS responses are below.

Credits

The following people deserve thanks for assisting in this process: