The International Day of Persons with Disabilities, observed every year on December 3, is a significant moment to reflect on the dignity, rights and well-being of persons with disabilities around the world. It invites governments, organizations and communities to focus on disability rights, inclusion and the removal of barriers that limit full participation in society.
Alongside these essential focuses, there is another reality that often stays in the background: the ongoing work many people with disabilities do to manage their own support, funding and care arrangements. This is especially true in contexts of Self-Managed Care for independent living.
International Day of Persons with Disabilities can also be a time to honour the often unseen work behind independent living, and why recognizing that work is an important part of disability rights and inclusion.
The Invisible Work Behind Independent Living
Independent living is often described in terms of choice, control and autonomy. For many people, particularly those using Direct Funding or similar programs, it also involves a significant amount of behind-the-scenes effort.
Administrative and logistical tasks
When independent living is supported through Self-Directed Care or Direct Funding, the person is often responsible for tasks such as:
Recruiting, interviewing and onboarding caregivers
Creating and maintaining schedules
tracking hours, timesheets and overtime
processing payroll or submitting information to a third-party provider
keeping records for audits or compliance checks
understanding and applying complex program rules
This work can be time-consuming and cognitively demanding. It often takes place in evenings, weekends or between other responsibilities such as employment, education, family care or health management.
Emotional and cognitive load
Beyond the visible tasks, there is also a significant emotional and cognitive load. Many people:
worry about making mistakes that could affect their funding or support
feel pressure to continually plan ahead for gaps in coverage or staff changes
experience stress when navigating systems that are not designed with accessibility in mind
In theory, independent living is about autonomy and control. In practice, Self-Managed Care can sometimes feel like a full-time administrative role layered on top of everyday life.
Recognizing this “invisible work” is important for a full understanding of disability-inclusive systems and the realities of home care in Ontario and elsewhere.
Why Honouring This Work on the International Day of Persons with Disabilities Matters for Disability Rights and Inclusion
Dignity and recognition
Persons with disabilities should have real choice in how their support is managed, whether that is self-managed through Direct Funding and other forms of Self-Directed Care, or coordinated by an agency.
The effort involved in self-managing care is substantial. It requires organisation, judgment and constant attention to detail. Naming and honouring this work:
affirms the dignity of the people who carry it
recognises the skill and responsibility involved
validates the stress and fatigue that can come with it
It is a way of saying: this work is real, and it deserves to be seen.
Equity of effort
When we talk about fair systems, the goal is not only equality, but equity. Two people may both have access to home support, yet the amount of work they must do to maintain that support can be very different.
People who choose or rely on independent living through Direct Funding or Self-Directed Care often take on far more administrative and coordination tasks than those who receive traditional, agency-directed services. They should have support that reflects that reality.
A focus on equity means:
looking at the workload attached to different models of support
ensuring that people who self-manage are not left to shoulder that work without adequate tools and assistance
By acknowledging the invisible work behind independent living, the International Day of Persons with Disabilities becomes not only a day of celebration and awareness, but also a clear invitation to reflect on how systems can change for the better.
Clearing the Path to Independent Living
International Day of Persons with Disabilities is an opportunity to celebrate the rights, contributions and diversity of persons with disabilities. It is also an opportunity to look closely at the systems that shape everyday life.
When the invisible work of independent living is acknowledged and addressed, autonomy becomes more accessible, sustainable and fair. In that sense, honouring this work is not only a gesture of respect. It is also a step toward clearer, more inclusive paths for everyone who chooses to live independently.
If You Are Looking For Support With Independent Living, Direct Funding or Self-Managed Home Care
If you are using Direct Funding or self-managing your support and the administrative side of independent living feels like a lot to carry, you are not alone.
Upliv is being created to help lighten that load by bringing key pieces like scheduling, timesheets, payroll information and compliance into one place, so independent living can feel more supported and more manageable over time.