Direct service funding is re-shaping Canada's developmental services sector and beyond, increasing individual choice while introducing new ethical challenges for providers. This paper examines one organization's transition to Ontario's needs-based autism program, where families receive direct funding to purchase services. Although the model enhances choice, it raises concerns about equity, two-tiered access and non-recommended service requests. In response, the organization used an ethics decision-making framework and developed nine ethics principles. These principles now serve as a compass that guides organizational decision-making for relevant ethical dilemmas. Sharing this experience aims to support others navigate ethical complexities associated with direct service funding.

Introduction

Debate over Canada's healthcare model – particularly the defensibility of increased privatization – has persisted for decades. In 1996, Dirnfeld (1996) argued in the Canadian Medical Association Journal that although the Canada Health Act (1985) outlines how provinces must deliver insured services, the public system was being strained by rising costs, demographic pressures and technological advances. He proposed not full privatization, but rather a parallel private system to reduce wait times, improve quality and expand patient choice.

While Canada has not adopted a full parallel private system, new funding models have emerged that reflect aspects of Dirnfeld's proposal. One such model is direct service funding, in which governments provide funds directly to service users, who then select, manage and pay for their own care. Ontario's revamped autism program is a prominent example.

Although direct service funding offers benefits, it also introduces ethical challenges for both service users and providers. This article examines our experiences as service providers in Toronto navigating these challenges during our transition and evolution in response to the Ontario Autism Program. We outline how direct service funding operates, describe the Ontario Autism Program as a case example, discuss the ethical issues encountered and explain the process through which we developed nine guiding ethical principles to support decision-making under this model, particularly when equity concerns and considerations arise. Our aim is to help other organizations prepare for the growing prevalence of direct service funding and client self-management.

Direct Service Funding and the Ontario Autism Program

Direct service funding provides individuals with government funds to purchase the services they need, contrasting with traditional models in which governments fund providers directly. Supporters of this model argue that direct service funding enhances autonomy by giving individuals greater control over their care and the freedom to choose among providers.

This model is becoming increasingly common. For instance, Ontario's self-managed attendant care program allows adults with physical disabilities to hire and supervise their own attendants for daily living tasks (Direct Funding Program – CILT n.d.). Community Living British Columbia (n.d.) offers a similar approach, enabling individuals or their agents to receive funds directly to purchase supports, hire workers or designate an agency to manage funds on their behalf.

Ontario's needs-based autism program, introduced in 2019, represents a major shift toward direct service funding for children and youth. Previously, organizations serving people on the autism spectrum were funded directly by the Ministry of Children, Community and Social Services (MCCSS). Under the new model, however, families apply through an independent intake organization, receive a funding allocation and then purchase eligible services from any provider they choose (MCCSS 2026; Ontario Autism Program 2022). In addition to receiving funds through the Ministry of Children, Community and Social Services, users may access other funding streams to enhance the amount of funds available for service provision. The province has indicated that this approach may expand to other developmental services, suggesting that direct service funding may soon become the norm, rather than the exception (MCCSS 2025).

Ethics and Direct Service Funding

As alluded to above, direct service funding is often viewed as ethically defensible because it enhances autonomy – the ability for individuals to make self-directed decisions (with or without support) about their care. In Western liberal contexts, where respect for autonomy carries significant weight, a model that allows people to allocate their own resources is naturally appealing. Yet this same model introduces complex ethical challenges for service providers.

Our organization, which supports people on the autism spectrum, was required to adopt a model from which direct service funding would be used under the Ontario Autism Program (MCCSS 2026). In response to the shift to direct service funding, we created a paid services stream of our organization through which individuals could use their allocated funds. During this transition, staff and leadership encountered – and continue to encounter – several unanticipated ethical dilemmas.

One early concern was the emergence of a two-tiered system, where individuals with funding could access services more quickly than those without, regardless of clinical need or risk. Relatedly, we worried about situations in which individuals urgently needed services – such as early intervention – but lacked sufficient funding at the time. Another challenge involved requests for services that were not clinically recommended but also were not harmful. For example, a parent might wish to enroll their child in a therapy group for a third time despite limited expected benefit. This raised a difficult question: should we prioritize respect for autonomous choice or decline to provide services unlikely to help? A final concern involved potential inequities across service streams. Because our agency serves people on the autism spectrum, as well as those with other developmental disabilities, some services are relevant to both groups. Families with direct service funding could potentially access similar services through both the paid stream and the government-funded stream, while others – without autism diagnoses – would have access to only one. This raised questions about fairness, resource allocation and organizational responsibility and accountability to service users.

Responding to the Ethical Complexities

To address these challenges, the leadership team sought guidance from their consulting bioethicist and committed to working through an ethics framework. During initial discussions, the team outlined 18 ethics questions that they had. Eventually, and after eliminating redundancies, the list was narrowed down to five. Because a single framework could not be applied to multiple competing questions at once, the ethicist asked leaders to rank the five questions/topics anonymously. After much discussion and productive debate, the team agreed that the most pressing issue was how to address inequities arising when families can access more than one funded service stream. In general, potential inequities arising within a model of direct service funding were and are of immense concern.

Using Trillium Health Partners' version of the IDEA framework, which incorporates elements of the Accountability for Reasonableness model, the team began by clarifying the facts: understanding the direct funding model, examining organizational structures and identifying how the new system might affect service delivery (Daniels and Sabin 2002; Gibson et al. 2005; Trillium Health Partners – Regional Ethics Program 2023). Using a decision-making framework, such as IDEA, can support administrators, healthcare providers and other staff in navigating both clinical and organizational ethical dilemmas in a systematic and fair manner, which was our goal. Our process, as guided by IDEA, emphasized open participation, aimed to minimize power differentials and allowed confidential communication with the bioethicist. The team also committed to making the decision-making process transparent to staff by presenting at and soliciting feedback via town halls.

Next, the team determined and defined relevant ethical principles. This step was of immense importance to the leadership team since the expectation was that the organization might turn to these principles as a guide when similar kinds of dilemmas arise under the new funding and organizational model. To determine which ethics principles were most relevant, the following steps were completed: (1) the leadership team was sent and discussed a non-exhaustive list of potential principles based on the list of principles and values included in the Trillium Health Partners - Regional Ethics Program IDEA guide (2023); (2) five out of eight members provided the ethicist with the principles that they thought were most important to consider for the overall question; (3) the team discussed each principle and developed and agreed on a corresponding definition; and (4) the team discussed and agreed that each principle is equally important. Reaching consensus required four hours (four meetings) and resulted in a set of guiding principles that – although developed in response to a particular ethics question – now serve as the organization's ethical compass when similar kinds of dilemmas arise. Here are the principles that we did and continue to use when working through relevant ethics dilemmas regarding direct service funding:

1. Stewardship: The careful and responsible management of resources and services entrusted to one's care. Being responsible stewards of resources involves recognizing that people are coming to our organization with the expectation of receiving services that will help them. We owe our clients and families the opportunity to access appropriate services and to not waste their money, irrespective of their source of payment.
2. Autonomy: Autonomy involves providing clients/families with the opportunity to spend their money in a manner that is free from judgment – this includes spending money provided by the Ministry and obtained via other sources. As a part of autonomous decision-making, clients/families should be empowered to make informed decisions by learning about all available options that are clinically recommended, in addition to any relevant risks and benefits. Respecting autonomy also involves respecting client/family decisions to disclose/not disclose how finances are obtained.
3. Conflicts of interest (COI): It is important for the organization, clinicians and staff to recognize, mitigate and potentially disclose potential, perceived and actual COI, particularly when considering which clients may be prioritized, and on what grounds, to receive services under the new direct service funding model.
4. Dignity: Regardless of whether funding is available, all clients/families deserve to be cared for and treated with respect and dignity. Dignity involves treating all people in a way that honours them as valuable and worthy human beings. We consider dignity to be a part of what is meant by respect for persons, which is one of our organizational values.
5. Integrity: Acting with integrity involves providing clients and families with accurate information about accessing services at our organization and holding ourselves accountable – doing what we say that we are going to do. If, for whatever reason, we are unable to offer certain services and/or to support clients and families in certain ways, then acting with integrity involves being honest and transparent.
6. Justice: Justice means providing access to care that is equitable. Although all clients and families should be offered available services that respond to their needs, equity involves recognizing that some clients and families may have particular vulnerabilities that may be important to consider when offering support; some clients and families ought to be treated differently than others in order to gain equity (e.g., a client with no family who is insecurely housed may deserve more or different access to resources in comparison with a client with a strong support network, finances and secure housing).
7. Person-centred and/or family-centred care: Organize and provide evidence-based therapies, services, interventions and interactions in ways that respect and respond to the client's and/or the family's values, preferences, decisions or self-identified best interests. We will respect the rights of our clients and facilitate any differences of opinion that may occur among clients, families and/or staff.
8. Transparency: When interacting with clients and/or families, transparency involves providing them with the information they need in a timely manner. When interacting with staff at all levels across the organization, transparency entails sharing information and communicating decisions at the earliest opportunity while at the same time maintaining confidentiality requirements.
9. Inclusiveness: Involvement/representation of relevant parties or individuals based on the notion that each brings knowledge or expertise needed to address any strategy and feels ownership of the solution.

The team then moved to the framework's third step: exploring options for addressing the central ethics question. Each option was assessed for potential benefits, harms, alignment with laws and policies, consistency with organizational values and defensibility based on the agreed-upon principles and values. To ensure a comprehensive and inclusive process, the team consulted the ethics committee, board of directors and interprofessional committee to determine what options might exist in response to the central ethics question of responding to potential inequities due to the new funding model. In addition, we consulted our Family Advisory Council (FAC). The FAC is made up of caregivers of children and adults with intellectual and developmental disabilities and/or on the autism spectrum, thereby allowing people with and without living experiences navigating direct service funding to share perspectives. Some of the options introduced and explored – in response to the dilemma – involved having Surrey Place support people to find ways to bridge funding gaps, triaging and prioritizing clients based on need, advocating to the government to address economic inequities and expanding our fundraising arm to support those in need with insufficient direct service funds available. The framework and emerging options were also presented at a town hall, where staff could submit confidential feedback. Through this process, the organization developed several viable options to reduce or respond to inequities created by the new funding model, none of which conflicted with the ethical principles or relevant policies.

As mentioned, direct service funding inspires several ethical challenges to arise, and our organization adopted the aforementioned ethics principles to serve as a compass that we can use when navigating relevant ethical complexities moving forward. For instance, there have been several instances in which caregivers and/or clients have asked us to provide services that may not be clinically beneficial. Specifically, requests have involved asking a child to join a group that is beyond their current communication capability or one that may put other children at risk due to their current frustration level, available coping techniques and resources dedicated to the group. In these cases, several of the ethical principles, such as person-centredness, integrity, autonomy and stewardship, have guided us in assessing available options and determining the most ethically defensible response. Every case is assessed individually, which means that in some circumstances, we may choose not to offer requested services because we cannot defend the action in accordance with the guiding ethics principles. In other circumstances, however, we may choose to honour the request. Ultimately, by having ethical principles available to serve as a compass when ethical dilemmas associated with direct service funding arise, we hope that our organization can respond to dilemmas in a manner that is consistent and ethically justifiable.

Conclusion

The shift toward direct service funding reflects a broader movement toward individualized, autonomy-enhancing models of care. While these models offer meaningful benefits – particularly increased choice and control – they also introduce complex ethical challenges for service providers, especially those serving diverse populations with overlapping needs.

By developing a shared set of ethical principles and applying a rigorous decision-making framework to an initial, specific question, we are now able to respond thoughtfully to concerns about equity and access when it comes to direct service funding and organizational commitments. As direct service funding becomes more prevalent across the developmental sector and beyond, organizations will increasingly need tools and processes to address similar dilemmas. We hope that the principles and approach outlined here offer a useful starting point for others working to balance autonomy, equity and high-quality care in an evolving funding landscape.

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