ARCH Submission to the Ministry of Health on Proposed Regulations under the Connecting People to Home and Community Care Act

July 15, 2021

Introduction

ARCH made submissions to the Ministry of Health on proposed Regulations to the  Connecting People to Home and Community Care Act (CPHCCA). This document is a copy of the submissions we made, in an accessible format. 

In preparation for making submissions on the proposed regulations, ARCH conducted a survey and held focus groups with persons with disabilities who will be directly affected by these regulations. It is important for the Ministry to know, at the outset, that ARCH’s responses to the proposed regulations are informed by the lived experiences of persons with permanent disabilities who use attendant services.  

ARCH’s primary concern is that the information is presented in a slide deck format, and not as a draft regulation.  The slide deck does not translate into a regulation, nor does the information provided tell us how the regulation will be implemented. ARCH, and communities of persons with disabilities, ask for an opportunity to comment on the regulations once they are finalized by the Ministry, but before they are adopted, so we can understand the regulations in a more fulsome and contextual manner, and consult on the language that is actually used.  

1. ARCH strongly recommends that an accessible and transparent process be developed to ensure input once draft regulation is released.

Scope of Services

Traditional Healing and Indigenous Cultural Support Services

ARCH acknowledges the Ministry’s introduction of Traditional Healing and Indigenous Cultural Support Services for Indigenous persons. We wish to emphasize the need for culturally appropriate services and the meaningful engagement of Indigenous leaders and communities in the development of these services. ARCH recommends that the Ministry ensure that Elders, leaders, and members of Indigenous communities are actively engaged and are meaningful participants in the process of developing and designing these services.

2. ARCH recommends that the Ministry ensure that Elders, leaders, and members of Indigenous communities are actively engaged and are meaningful participants in the process of developing and designing these services.

Other Supports

ARCH supports the Ministry’s introduction of bereavement services, behavioural supports, and education, prevention, and awareness services in a number of areas.  

3. ARCH recommends that experts be consulted in each area and to make sure that the Ministry is funding and providing these services in an accessible, accommodated and culturally appropriate manner.

4. We also recommend that when introducing the new services, the Ministry use the word, “includes” so that the list of new services is not finite but instead, open-ended. This would allow new and additional services to be added in the future.    

Service Maximums

ARCH supports the removal of service maximums. However, we are concerned that once service caps are removed, there will not be adequate and appropriate services in place to meet consumer demand. Our experience is that consumers do not have their service needs met now, within a current service plan. For example, we have a client who has been assessed for, and is entitled to, 240 hours of attendant services per month. At present, he is not receiving any attendant services because of the severe shortage of PSWs in his region. ARCH would therefore like additional information about how services will be adequately provided to all consumers in the future. No consumer should be worse off under the new regulations.

5. ARCH recommends that additional resources be dedicated to the home and community service sector to meet the demands that may arise due to the removal of service maximums. 

6. ARCH recommends that there be no reduction in services for consumers to make up a shortfall in available hours.

We also ask for assurance that no consumer will be left without services, and that agencies have policies about what to do when a scheduled PSW is not available. Consumer’s back-up plans should not be relied on to replace home and communication services.  

7. ARCH recommends that the Ministry address how “no shows” for attendant service delivery will be met to ensure essential coverage for consumers.

8. ARCH recommends that that the Ministry direct agencies develop policies to address cancellation of services, without reliance on a consumer’s back up plan.

Equity of Access

ARCH is concerned by the lack of information about what is meant by “service allocation to support equity of access” and how it may be interpreted. Equity of access cannot replace an individualized assessment, which takes into consideration the individual’s disability and related supports so they can live independently in the community. Moreover, service allocation to support equity of access is not defined in the HCC slide deck.

ARCH is very concerned with the increased use of inter-rai assessments, as a replacement for actual in person and individualized assessments. The inter-rai assessment tool fails to take in consideration the individual’s unique experience of disability.  The inter-rai tool only reflects what is measurable, without consideration of those unmeasurable qualities that assess an individual and their actual needs. In addition, the standardized assessment only measures what is contained in the assessment, and does not take a human rights and individualized approach. 

9. ARCH recommends the Ministry maintain and ensure individualized assessments are used to determine service needs.

Client/Patient Eligibility Requirements

Transitions

The Ministry proposes to provide personal support in long-term care homes for a transition period to newly admitted persons with behavioural issues. All persons transferred to long-term care facilities would benefit from transitional services given a new setting that is, in essence, the complete opposite of independent living.

10. ARCH recommends a transparent and accountable process for identifying transition support needs in line with human rights principles that require individualized approaches to support and transition.

Traditional Healing and Indigenous Cultural Supports

The Ministry asked for feedback on the eligibility criteria for these services. ARCH advised that their questions must be directed to the communities who are impacted by this recommendation.

Care Coordination

11. ARCH recommends that care plans must be provided in accessible format to the person using attendant services.

The proposed regulations state that “Care coordinators go beyond the functions articulated in regulation.” ARCH is concerned that no detail about what those additional functions are is provided. For example, will care coordinators take into account issues like service delivery in regional, rural, northern and Indigenous communities? How will these issues be determined?  Does this mean that Care Coordinators will be able to exercise discretion? What kinds of issues would Care Coordinators be permitted to “go beyond the functions articulated in regulation”? 

12. ARCH recommends that the Ministry describe what these additional functions are in the regulation. 

The slide deck says that Health Service Providers (HSPs) and Ontario Health Teams (OHTs) can implement new models of care and that they can assign care coordination differently among care partners. ARCH is concerned that this will result in a patchwork system of delivering attendant services across the province.

13. ARCH recommends a transparent and open process for making determinations on new models of care and the assignment of care coordination.

14. ARCH recommends that the Ministry identify new models of care that are being considered and ensure that persons with disabilities have an opportunity to comment on them.

15. ARCH recommend that the Ministry identify how OHTs and HSPs will assign care coordination differently among care partners.

Consumers of Attendant Services

The illustration provided on Slide 15 does not apply to consumers of attendant services. It is about patients being released from hospital. As ARCH has stated in previous submissions, patients being released from hospital are often not consumers of attendant services and they are not interchangeable groups of people.  We are concerned that these regulations, on whole, will conflate the needs of very different cohorts and that persons with permanent disabilities will not get the full suite of services available. 

16. ARCH recommends that this regulation focus only on consumers of attendant services.

17. ARCH recommends that the word “consumer” replace “patient” in the regulation.

Care Planning

The Ministry requested feedback on the factors to be considered when planning care. The Ministry proposes that when a care plan is developed, the planner should take into consideration, “the effective and efficient management of human, financial, and other resources.” ARCH is concerned that with the removal of services caps, consumers will face cutbacks in service delivery to make up for financial shortfalls. The availability of appropriate human resources for service delivery should be the primary consideration, before financial interests. The Ministry must also make sure that the attendant services sector receives sufficient and appropriate funding to ensure that consumers receive all of the services that they require. In a survey conducted by ARCH, a vast majority of consumers told us that they are not getting enough attendant service hours to meet their needs and that there are not an adequate number of PSWs to provide these services. Resource issues should not be used to defeat service needs and the delivery of quality services.   

 18. ARCH recommends that the Ministry commit to fully funding attendant services to ensure they meet all of the needs of all consumers.

Virtual services

The Ministry included a provision that requires the person creating the care plan to take into account “the relative costs and benefits of providing services inside and/or outside the home and in-person or virtually.” ARCH is concerned about this provision.

Virtual services may not be accessible to some consumers, either because they may not have the required technology, or the platforms used are not accessible. For example, there is a service that some doctors now use to share health information with the user of attendant services and other health care providers. However, that platform cannot be read by screen readers, which means that consumers with vision disabilities are denied access to it.

19. ARCH recommends that the Ministry ensures that virtual services are only an option when they are accessible, and where the services provided are of the same quality both in person and virtually.                           

Family and other supports

The proposed regulations outline that the availability of family and other supports should be taken into consideration when planning services. ARCH submits that the availability of family and other informal service supports should never be a substitute for the delivery of professional, high-quality services. While it may be that a family member can, in limited circumstances, supplement publicly funded attendant services, they cannot be used instead of providing professional and quality services.

Additional Rules for Care Coordination Functions

The Ministry wanted further feedback on whether there were any additional rules or parameters that the Ministry should consider regarding a HSTs and OHTs assign of care coordination functions.

In response to this request, ARCH outlined, if the Ministry is going to allow contracted agencies to coordinate care, it is important that the Ministry explain how the HSPs and OHTs will manage, supervise and account for the actions of contracted agencies, to ensure that they are effectively coordinating services. Moreover, there should be specific oversight, compliance, and enforcement provisions, to hold HSPs and OHTs accountable for any actions of contracted agencies. Penalties for lack of accountability and oversight should be significant, to ensure that appropriate coordination of quality care services are respected and in place. Consumers of attendant services are entitled to quality services that do not depend on a contracted party making money for investors. Quality, not financial considerations should drive service provision to persons with disabilities, many of whom are low-income and can’t afford to pay for private services.             

In the draft regulation the Ministry proposes to set out detailed expectations and guidance on care coordination in policy. ARCH asks why accountability is not set out in the regulation itself. Accountability should be a key feature of the regulation, given the horrific discoveries of abuse and neglect, leading to death, in long-term care facilities during the COVID-19 pandemic.  Persons with disabilities who rely on attendant services to live in the community should not be held hostage to agencies that are not held accountable by the force of regulations but rather unenforceable interpretations of “policy”.

20. ARCH strongly recommends that an accountability framework be detailed in the regulations.

Bill of Rights, Locations of Service, Eligible Providers, Methods of Delivery

Bill of Rights

ARCH supports the Ministry’s proposed additions to the Bill of Rights. In particular, ARCH supports the right for consumers to be dealt with in a manner that is free from discrimination, in accordance with Ontario’s Human Rights Code. We also support the inclusion of clear and accessible information in the consumer’s service plan.

21. ARCH recommends that the right to clear and accessible information and communication apply to all service provider communications with consumers. 

The emphasis on consumer participation in decision-making about their service is also a key right. 

22. ARCH recommends that supports to communication and decision-making will be provided to ensure a consumer’s right to participate in their treatment plan, and in any decision-making regarding their service needs, and delivery of services. 

In ARCH’s questionnaire and focus groups, participants recommended that additional rights be included in the Bill of Rights.

23. ARCH recommends that the following rights be added:

A. The right for consumers to choose how attendant services are provided;
B. The right for consumers to assist in the selection of attendants;
C. The right for the consumer to report concerns to management AND to have those concerns addressed promptly;
D. The right to participate in restorative practices with attendants to resolve complaints, about training for attendants, the independent living philosophy, conflict management and resolution or any other issues that affect the consumer’s interests;
E. The right to a Consumer Advisory Committee in supportive living units, this Committee must be consulted when an agency creates policies. Other congregate care settings must also have a Consumer Advisory Board;
F. The right to access an impartial third party for resolution of any/all complaints.

Locations of Services

ARCH is concerned that the Ministry is proposing that home and community services will no longer be offered in hospitals. Most PSWs are trained in ways hospital staff may not be. They are familiar with the consumer and how services should be delivered to an individual safely and in accordance with their wishes. In addition, these regulations need to be harmonized with other proposed regulations, such as the Health Care Standard under the Accessibility for Ontarians with Disabilities Act, which may conflict with these proposed regulations. 

24. ARCH recommends that consumers retain the right to have their PSW available to them while in hospital.     

Eligible Providers

ARCH supports the Ministry’s decision to not contract with for- profit services when providing community support services. Private companies may sacrifice quality of services for fiscal efficiency, as clearly seen in long-term care facilities during the pandemic.

25. ARCH recommends that the Ministry go further, and mandate that HSPs and OHTs cannot contract with for-profit agencies for home and community services.

Plans to Prevent Abuse, Complaints, Appeals, Patient Ombudsman

Plans to Prevent Abuse

ARCH agrees that agencies must have plans to prevent abuse.

26. ARCH recommends the Ministry require that agencies take into account intersectional identities when drafting these plans or investigating abuse.

27. ARCH recommends that all allegations of abuse must be investigated and a written response provided to the consumer.

28. ARCH recommends that agency plans are included as part of all service contracts, in an accessible format.

29. ARCH recommends that abuse plans include resources for consumers so they can get information or advice about abuse, including counselling, police services and legal assistance.

30. ARCH recommends that data be kept on all allegations of abuse, the outcome of investigations, and the steps taken as a result of any investigation. This information should be publicly available in an annual report from Ontario Health.

Complaints

ARCH supports the addition of a shortened timeline (10 days) for complaints that allege abuse, harm, or risk of harm.

31. ARCH recommends that the timeline to handle all other complaints be shortened to 30 days, thereby encouraging prompt and efficient resolution of complaints or referrals to other complaint mechanisms available to the consumer.

32. ARCH recommends that the agency advise the consumer of what additional steps are available to them and provide resources about where the consumer can get advice and/or assistance.     

Appeals

ARCH has made numerous submissions to the Ministry on the appeals process available to consumers. Our survey responses and focus groups highlighted the importance of a fulsome complaints and resolution process. We were told that the current list of appealable issues is too narrow. We were also told that consumers are not satisfied with any appeals process that does not have an independent third party decision-maker.

 33. ARCH recommends that the Ministry either:

A. Establish an independent body to determine quality of service appeals or review internal decisions made by the service provider or
B. Expand the jurisdiction of HSARB to include quality of service complaints, which would include violations of the Bill of Rights.

Self-Directed Care, Residential Congregate Care, Other Related Amendments

Self-Directed Care

It is not clear to ARCH what “self-directed care” means on Slide 31.  Is the Ministry proposing that the Direct Funding Program be taken over by OHTs and HSPs?  If that is the intent of these regulations, there must be a broader and more extensive consultation on this issue.

However, if the government is referring to the current Family Managed Program provided by the LHIN, ARCH has learned from our communities that this program requires significant revision. In particular, the current program states that once a child turns 18, if there is concern about the child’s decision-making capacity, their parents must obtain a Power of Attorney or Guardianship. This undermines the decision-making rights of the individual receiving the services.  

34. ARCH recommends the regulation be clear that supports and services will be provided to enhance the decision-making rights and participation of the individual receiving services.  

Residential Congregate Care

ARCH requires further information on these settings, and would ask that we be part of the further consultations described in the slide deck.             

Other Feedback

The Ministry asked for any additional feedback on the regulations.

ARCH’s feedback is based on our consultations with consumers of attendant services. In October 2020, and February 2021, ARCH conducted both a survey and focus groups on what the proposed regulations might address. To read more about the results of the survey and the focus groups, go to: Connecting People to Home and Community Care: Survey Results

Use of the Word Patient is incorrect

The language used throughout the proposed Regulations is inconsistent with the language used by persons with disabilities to describe themselves, and one that has been adopted by the home and community services sector.  Persons with disabilities who receive home and community services are not “patients”. ARCH argues for the use of “people with disabilities” or “consumers”. Given that these terms reflect how persons with disabilities describe themselves, we urge the Government to adopt disability positive language.  In addition, the regulation must make it clear who is being addressed in this regulation.

Environmental Scans

ARCH also asks that the Ministry undertake environmental scans every three years to ensure that rural, remote, northern and Indigenous service needs are the focus of PSW recruitment, and so that persons with disabilities in under-serviced areas have their needs met on a basis equal to urban centres.  This requirement must be in the Regulations to ensure that the Ministry performs this function.

Clear and Accessible Language

ARCH submits the reposted Regulations and accompanying documents be provided in clear and accessible language to avoid misunderstandings or need for additional clarification. The Regulations must be clearly drafted so persons with disabilities know their obligations and/or rights and the services available to them. They must know what agency or body will respond to questions or complaints.  This information must be part of each individual’s service plan.

Harmonization of legislation and regulations

ARCH submits that the Ministry must ensure that these regulations are harmonized with existing legislation and regulations to avoid conflicts and misunderstanding.

Annual Report

Ontario Health must issue an Annual Report, available publicly, on compliance, enforcement, delivery of services and needs met, unmet needs and complaints and their outcomes.

Ministry Spot Checks

The regulations must provide for Ministry spot checks to ensure that agencies and OHTs/HSPs are operating as they should and in accordance with the Act and Regulations.

Need for further consultation

The Draft Regulation must be made available for consultation.  The present process in no way replaces the need for an open and transparent process to consult on the Draft Regulation to ensure that it is considered in a more fulsome and contextual manner, and on the language that is actually used.