By Michael Hiscoe.
Developmental services (DS) is an often overlooked but significant sub-sector of the Ontario nonprofit space. This research paper examines the current funding model for the DS sector in Ontario and compares it, through the lenses of equity and person-centredness, with the funding model proposed by the Ontario government in 2021. I’ll also analyze what we may expect from funding reform, and I’ll look at what’s been done in Australia in terms of funding reform — and what Ontario can take from that experience.
Background
Currently governed by the Ministry of Children, Community and Social Services (MCCSS), the developmental services sector provides support in daily living and builds a sense of belonging in the community for people with developmental disabilities (DD). To compare models and jurisdictions more easily, this paper focuses on supports offered to adults with DDs, as children’s services are provided differently and have separate funding and compliance requirements than adult DSs.
A developmental disability is considered by the Ontario government as “(being) present at birth or develops before 18 years of age, affects a person’s ability to learn, is permanent,” and “can be mild or severe” (MCCSS, 2023b). Examples of DD include Down syndrome and cerebral palsy. Many developmental disabilities are generalized with no specific diagnosis. Often used interchangeably with DD in the literature is the term “intellectual disability” (ID), which, while perhaps easier to understand, does not account for the physical disabilities that often accompany a DD. Also, many learning disabilities fall under the ID umbrella that would not fit with DD and would not qualify for DS support, making for a complicated Venn diagram of disorders. This variance demonstrates the confusion that individuals with disabilities and their families can encounter when looking to access services. However, this paper uses ‘developmental disability,’ as that is the language used most widely by the Ontario government and its placing agency, Developmental Services Ontario (DSO).
To access developmental services in Ontario, a psychological assessment is required as proof of eligibility, followed by an assessment process with a DSO agent to help determine the necessary level of support for the person. This typically results in the person going on a waitlist to be placed for support. An algorithmic “priority score” is then assigned to the individual that determines their placement on the waitlist. The criteria for the score aren’t fully disclosed but include the personal needs of the individual, as well as the ability for the person’s family to continue to provide care. The length of wait then depends on the availability and capacity of DS agencies to accept an individual from the waitlist. DSO recommends that people apply for adult services at 16 years of age to avoid service delays when they become eligible at 18 (DSO, 2021).
The DS sector in Ontario received $2.9 billion in funding in 2021-2022, with approximately two-thirds of that going towards residential support and services (MCCSS, 2023a). According to CUPE, one of the major labour unions representing the sector, 21,000 employees support 18,000 people with developmental disabilities in residential care in Ontario (Hahn, 2014).
The DS sector in Ontario is currently operated under an NPO/Quasi Market model where the government provides funding directly to nonprofit organizations (NPOs) that then provide the service to the end-users. In May 2021 (and later updated), MCCSS announced a long-term plan for reform for the DS sector with a document titled “Journey to Belonging” (MCCSS, 2023c). While the document details many elements for reform, some ideological, some practical, perhaps the most impactful of these changes is the proposed reform of the current funding model. While original communication of the funding model was vague, clues were given within the document that the government was looking to move to an individualized funding model where the government would provide funding directly to users based on their assessed needs. These users would then be able to choose the services they access and the organization that provides them.
This research paper will examine the current funding model for the DS sector in Ontario and compare and contrast it with the proposed funding model through the lenses of equity and person-centredness. I’ll also analyze what we may expect from funding reform based on the language in the “Journey to Belonging” (JTB). Finally, I’ll look back at what has been done in Australia with their funding reform and what Ontario can take away from that experience.
Two Models of Funding
#1 Direct Funding to Nonprofit Organizations
As described above, the current funding model sees the provincial government enter funding agreements with nonprofit developmental services agencies, who then provide services to end users. The agency then must abide by compliance regulations laid out by the ministry or risk losing funding (Government of Ontario, 2021). Users ultimately have little choice regarding where they receive their services and are more or less at the mercy of where DSO places them based on organizational capacity and available resources. Users have the ability to turn down placements, but at the risk of remaining on the waitlist indefinitely.
The benefit of this model to the government is that they aren’t left saddled with the burden of providing the service itself, including the administration, training, and bricks-and-mortar required to run a DS agency. It fits nicely in the “steer, not row” school of thought (Peters, 2011) that sees governments provide direction and oversight, but others will do the work and provide the service. This can be passed on to the partnering agencies, who can use the funding to hire qualified personnel to carry out the work. This model is standard in health care, social services, and education, sub-sectors that offer specialized services, operate locally and require large employee bases to run well.
The drawbacks of this model from a government perspective are that it is costly, and then the government loses final control of how the funds are used. Because each agency is funded individually, administrative costs are replicated across each agency, even when some provide identical services in the same communities. It would be difficult to operate on a larger scale without returning to the institutional model that has only been fully phased out over the past two decades.
#2 Individualized Funding
The individualized funding model proposed for the DS sector in the “Journey to Belonging” would involve eligible individuals with developmental disabilities receiving funding directly from the government rather than having the funds go to the service provider. The individual with a disability would then be able to use that funding and choose their service provider. Advantages of this model are it gives the end user control over where they receive services and what those services are. Disadvantages are that it puts the onus on the user to vet service providers, and it could potentially lead to a semi-privatization of the market in the sub-sector through increased competition among NPOs and then being muddied with private, for-profit organizations offering similar services. It can also lead to an over commodification of the services and an increased focus on offering and delivering of services with little attention paid to outcomes (Dickinson, 2022). Taking the “steer, not row” analogy one step further, this model strives to hand the oars and the boat over to the end user.
Both models allow people with developmental disabilities to access services. However, the Ontario government feels the individualized approach will reduce waitlists and give users more control over the services they receive. Some may accuse the government of making this move as a cost-saving measure and move towards semi-privatization. However, individualized funding has already been adopted in other jurisdictions, notably Australia, whose experience will be used to analyze what to expect in Ontario later in this paper.
Equity
The first angle we’ll use to examine the two funding models is equity. By equity, we mean, do all people with developmental disabilities have equitable access to services under each model?
Direct NPO Equity
Under Direct NPO funding, all individuals have equal access to services, but it is not necessarily equitable. For example, once a person with a developmental disability turns 18 and they’re eligible for services, they’re put on a waitlist and when they come to the top of the list, they’re presented to service providers who have vacancies to fill. The service providers can then evaluate the profile and assessments provided for the individual and determine if they’re suitable for the vacancy or not. Should an agency pass on an individual because they’re deemed unsuitable for the vacancy, they would then go back on the waitlist until a match is made.
Under this model, the people with disabilities with the easiest to accommodate needs are more likely to be placed and able to access services. The model is fair in that everyone gets their turn when their time comes up, but not equitable because many will have to wait longer for services, and it may not be the services or the provider they truly wanted. This model sees that most control lies with the funders and the service providers.
Another way this model could create inequities is that with the control lying with service providers, people with developmental disabilities could end up being over or under-served in a group living setting as a person with minimal needs may find themselves placed or accepted by a facility that is equipped and staffed to handle higher needs, meaning that resources are allocated where they may not be necessary. The individualized funding model could theoretically correct this inequity.
Individualized Funding Equity
The individualized funding model, while it is still largely unknown exactly how it will look in Ontario, is designed to ensure that each person receives the funding necessary for the services they need. So rather than the government providing a certain amount of funding based on capacity, with some people requiring more resources than others, individuals will receive an allocation of funding based on their needs and then be able to take that allocation to a service provider and choose the provider who is the best fit for them. Users may choose to splinter their services, for example, using residential services from one provider and day program, recreation, or employment support services from another provider. This approach is undoubtedly more equitable for users and takes control away from service providers who would say “yes” or “no” to a potential intake. It gives that control to the user now selecting if they want the provider’s services. With funding allocated based on needs determined by the assessment and control staying with the end user, it creates a more equitable approach to developmental services. Each person gets what they need/deserve, and they will only access the services they require and can choose who provides them.
This model can also fail the equity test if an individual lives in an area lacking sufficient services or choices. This “thin market” phenomenon has appeared in Australia after their individualized funding shift (Reeders et al., 2019). Suppose there isn’t a substantial market for services in a particular region or community. In that case, those who do live in that market may be left out as the model may incentivize service providers to focus on more heavily populated areas.
Likewise, an individualized model may be inequitable from a service-delivery perspective if the individual’s needs are more complex to a point where there is not a strong market to support it. That could mean that supports do not exist locally, experienced and trained workers could be lacking or the funding attached to the more complex needs is not attractive enough for service providers to invest the resources to support them (Smith-Merry et al., 2023).
Person-Centredness
Direct to NPO Model
The Direct to NPO funding model currently used in Ontario is not person-centred. It is based on efficiency and is centred on funding organizations and services rather than people. One could argue that the assessment process is more person-centred, but the result of long waitlists and difficulty finding placements negates that.
The broad characteristic of a person centred approach is that the person with a disability is placed at the centre of the decision-making in collaboration with the service provider, their family, and their community (Sanderson, 2000). The current model places the person with a disability in the margins and not a participant in the decision-making. They serve more as a product only to be acquired if they can be an appropriate fit operationally to an organization. While person-centredness is at the heart of operations in the Ontario DS sector, the current funding model puts the service providers at the centre.
This funding model is ultimately structured to benefit the needs of the system rather than the people it serves (Olney & Dickinson, 2019). Funding is allocated to agencies based on parliamentary budgets, and then it is on the service provider to make the most of that funding to serve the individuals best.
Individualized Funding Model
By definition, the Individualized Funding model is person-centred. People with disabilities are given the funding that they need and deserve and then are given control of it to put it to use where they best see fit. Under this model, suddenly, the organizations providing the service become the product, and the person in need of service becomes the customer. This is much more analogous to the market structure in the private sector and any other service function in society. Even sectors such as primary health care that are entirely publicly funded leave the decision-making with the user regarding where they go for services. This more person centered model of funding is attractive in its potential for putting users in control of their funds and their services, but it does not come without potential hurdles and implementation issues.
Passport Funding
While the individualized funding model will be new to the Ontario DS sector on a broader scale, it has been quietly piloted with the same population for several years through the Ontario Passport Program. The Passport Program is intended to fund community participation for people with developmental disabilities and respite services for caregivers. During the pandemic, the program’s scope was widened to include technology purchases and subscriptions when community participation out of the house was severely limited.
Starting in 2005, the program offers a glimpse at how individualized funding may look in Ontario. Most people with disabilities are eligible for $5,500 annually (10% goes to the agency managing the funds to cover administration). However, some can be eligible for as much as $44,275 based on their needs (Developmental Services Ontario, 2021). The program is administered on a reimbursement basis rather than allocating all of the funds directly to the individual and allowing them to spend freely. An individual will purchase a service or pay for an activity or item and then submit receipts for reimbursement. This can create barriers if an individual does not have the funds to cover a cost upfront before reimbursement, or either a user or service provider may cover costs upfront. Then the claim is denied by Passport leaving them to absorb that cost. There is, however, a pre-approval process for certain services. A centralized agency in each region manages accounts. March of Dimes is the Passport Agency for the Eastern Ontario region.
Many elements of the Passport program can be directly applied to a larger DS funding model. The first is the actual management of the money. Rather than directing the funding directly to users, where there would be little oversight into if the funds were used appropriately, they’re allocated the funds, and a central agency then manages the account. This will be especially important as individuals or families should not be expected to manage potentially hundreds of thousands of dollars independently. Having the regional agencies manage the transactions takes the administrative burden off of the user, but the user gives up some of their control in the process. There is an online portal called MyDirectPlan that allows users to view the status of their claims and see how much of their funding they have remaining. Such a system will be necessary for users to manage their funds and have a means of tracking what money is going where as many users could end up with multiple providers for different services and will be much harder to track than the smaller scope of the Passport program.
Journey to Belonging
Ontario’s “Journey to Belonging” points us toward an individualized funding model, but what can we learn from the document about what is to come? The first clue comes in the introduction: “People have said that it can be confusing trying to navigate support from multiple government programs.” This could indicate that there will be a consolidation of services or funding sources as part of the transition. Currently, people with disabilities would typically receive Ontario Disability Support Program (ODSP) payments and their Passport funding. Then their funding for residential services would go to the service provider (residential service fees are part of a person’s ODSP allotment and are then paid to the service provider). The Ontario government may choose to consolidate ODSP payments with the allotment that would go towards their services into one account as the new model would make the current arrangement where people with disabilities receive a dollar amount from ODSP for their residential fees, which then gets paid to the agency. This money does not come close to covering the total cost of supporting the person, and the rest of the funding for support comes straight from the government to the agency. With individuals receiving the funding themselves, this split becomes unnecessary and the total cost of supporting a person can come from the individualized account.
Later in the JTB, the “Reform Plan: Key Commitments” section has a sub-heading of “A new funding model focused on people.” This is the most direct indication of what the new funding model may look like. The text to follow echoes much of what has been said earlier in the document, referencing person-centred funding, equity, and transparency, and giving people more control over their support.
Interestingly it presents a hint of a potential hybrid model of funding. The document states, “People could continue receiving support from service providers or choose to manage their funding directly. It could also mean a combination of both.” This could mean that people with disabilities, particularly those who have already been receiving services from providers for some time, could continue receiving those services under the same parameters, and the government would continue to transfer payments directly to the service provider. The user could then continue having control over Passport funding or choose to splinter their services and receive other services like day programming or employment supports through another provider. This hybrid model makes sense as many people with disabilities and their families may be comfortable with their current arrangement and not want to be responsible for managing their funding. However, the option is there for them should they want it. This should also put service providers at ease, who may be concerned about an overnight switch in funding levels. The hint of a hybrid model suggests a measured and slow transition to individualized funding, with most existing users being grandfathered in with the old model and newer users coming in with individualized funding.
The Australian Lesson
While this switch will be new territory for Ontarians, we’ll benefit from other jurisdictions who have used this model for developmental services, particularly Australia, which also tend to be leaders in research on people with developmental disabilities.
National Disability Insurance Scheme
The National Disability Insurance Scheme (NDIS) was introduced in Australia in 2013 after several years of consultation and proposals for new models. It was trialled, and then a progressive launch began in 2016. The NDIS is an individualized funding model through and through and is the best real-world example of what the Ontario model is likely to look like.
Once deemed eligible, the planning process would start, including the budget building. NDIS has three separate budgets; the “core supports budget,” which includes funding for the person’s day-to-day care, activities, and consumables required for care; the “capacity building budget,” which includes employment, exercise, and community participation supports, and the “capital support budget” which entails assistive technology and home modifications necessary for living (National Disability Insurance Agency, 2021). Segmenting the budgets so greatly allows for a personalized assessment of a person’s funding needs. This opposes the current Ontario model, which sees more blanket funding to service providers per person.
The plan’s implementation was gradual, just as the intention appears to be in Ontario. Even still, the rollout did not go without any issues or challenges, and while the rollout was gradual, over several years, the rollout’s speed and scale were considered the source of many of the challenges (Buckmaster & Clark, 2018).
The first issue during trials was the MyPlace portal which was intended to be used to get payments to providers. A review of the technology issues found that the portal was launched before it was ready and that the program was under-resourced to provide support when issues arose (Cummins, 2016). Ontario would be best served to ensure that any portals or web-based technology have been stress-tested before a wide launch. Ensuring that as many Passport users are onboarded to this system as possible will ease the transition.
Another issue raised in implementation was how the needs assessments were conducted. Many of these assessments and planning meetings were done over the telephone. To many users, this was a less-than-ideal means of assessing a person’s needs (National Disability Insurance Scheme, 2018). The NDIS improved on this by booking more face-to-face meetings. Now in a post-pandemic world, Ontario can plan to avoid this hurdle by utilizing video-conferencing software where necessary while prioritizing face-to-face meetings.
There was also continuity of care issues that came with the rollout of the NDIS. A study out of the University of Sydney found that the NDIS missed people with disabilities that arose from mental health issues and instead are forced to rely on limited mental health supports or that even if eligible, many people did not apply for NDIS for many reasons, but many of which boiled down to a lack of understanding of the program, what it offered and how to access it (Smith-Merry et al., 2018). This will be an essential part of Ontario’s transition to ensure no one is left behind. Many people with developmental disabilities have a “dual diagnosis” of a mental health diagnosis along with their DD. Often mental-health issues can mask the developmental disability, and challenges they may face are attributed to the mental health issue but could be better supported through developmental services. Even if the funding is appropriately allocated for these illnesses, the supports must also be in place and be accessible, or that funding will not be put to use (Devine et al., 2022). For this transition to work, the Ontario government will need to ensure that the new system is accessible, easy to understand, no significant gaps in coverage, and that service does not stop for anyone when the transition takes place.
Another failing of the individualized model in Australia was that many users did not understand the new model or fully utilize its flexibility. As you may expect from any other free-market model, service providers ended up bundling services resulting in many users receiving services precisely as they had before under the previous model (Laragy et al., 2015). This result is despite early pilots finding that the vast majority of users reported more independence, choice, and control over their services under the individualized model (Fisher et al., 2010).
The expense of such a plan will most certainly be a consideration of the Ontario government. As previously mentioned, cynics may suggest that individualized funding is a way to privatize and spend less on disability services. In Australia, at least early on, the reality was quite different. The NDIS reportedly doubled disability spending in Australia, an additional $6.5 billion (AUD). In comparison, this initial increase in the expense is substantial. The program intends to be preventative by placing individuals in one of three tiers, and by receiving some funding in a lower tier, it may keep a person from reaching a more expensive tier with higher needs and, in turn may have broader economic benefits outside of the cost of the program itself (Dickinson & Yates, 2023).
Conclusion
In this paper, we have examined two funding models for the developmental services sector in Ontario: the Direct Nonprofit model and the Individualized Funding model. We have also explored these models through the lenses of equity and person-centeredness and drawn lessons from Australia’s National Disability Insurance Scheme (NDIS) as a real-world example of individualized funding implementation.
The Direct NPO model currently used in Ontario has the benefit of passing on the burden of service provision to nonprofit organizations, allowing the government to provide oversight while avoiding direct administrative responsibilities. However, it may result in inequitable access to services, as people with developmental disabilities who have easier-to-accommodate needs may receive services more quickly than those with more complex needs. Moreover, this model may not prioritize person-centeredness, as decisions about service placement are primarily made by service providers, leaving individuals with disabilities with limited control over their support options.
In contrast, the Individualized Funding model proposed in Ontario’s “Journey to Belonging” offers a more equitable approach, allocating funding directly to individuals based on their assessed needs. This empowers the end-users to choose the services and providers that best suit their requirements, enhancing person-centeredness. However, potential challenges include the responsibility of managing funding, potential semi-privatization of the sector, and the need for efficient oversight to prevent misuse of funds.
Drawing lessons from Australia’s NDIS, we see that individualized funding can be successful but requires careful planning, gradual implementation, and effective technology to avoid administrative hurdles. Ensuring accessibility, understanding, and continuity of care are crucial during the transition to avoid leaving anyone behind.
In conclusion, Ontario’s DS sector is on the verge of a significant transformation with the proposed shift to individualized funding. This shift can potentially enhance equity and person-centeredness for individuals with developmental disabilities. However, successful implementation will rely on clear communication, technological readiness, and a commitment to ensuring everyone can access the support they need throughout the process. By learning from the experiences of other jurisdictions and working collaboratively with people with disabilities and their families, Ontario can take a step closer to creating a more inclusive and empowering developmental services system.
Michael Hiscoe is a student in the Master of Philanthropy and Nonprofit Leadership program at Carleton University. He wrote this paper for the PANL5002 “Policy and Legal Environment” class in the summer of 2023. Hiscoe can be found on LinkedIn.
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Tuesday, May 7, 2024 in Closer Takes, For homepage, News & Events
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