Let’s move forward on disability rights

Tyson Sylvester wants to study computer science.

He has the intelligence, the determination, and the ambition to succeed in post-secondary education. Like thousands of young Manitobans graduating from high school, he wants to pursue higher education and build a career.

Instead, he is spending his young adult life fighting the provincial government to simply receive the supports he needs to get there.

Tyson lives with cerebral palsy, is blind and uses a wheelchair. The irony here is that Tyson can’t get government support because he scored too high on an IQ test.

That is the system he is fighting to change.

I met Tyson through the Manitoba Cerebral Palsy Association, where I serve as executive director. Through this work, I also met Amelia Hampton — a thoughtful, courageous advocate who refused to accept that Manitoba’s disability services had to remain broken. Amelia is no longer with us, but this work carries her name, her determination, and her vision. We continue it on her behalf.

The disability community in Manitoba stands behind Tyson and Amelia in calling not for small improvements, but a complete overhaul of the province’s disability services programs.

Today, the support a Manitoban with disabilities receives depends largely on age, medical diagnosis, an IQ test, or how you acquired your disability. The services offered are not decided by engaging with the individual to best determine what they need. It is basically a generic checklist with zero input from the person in need of the services.

Tyson and Amelia recognized this system for what it is — dismissive of people’s individual needs and inconsistent with their human rights.

The Manitoba Human Rights Commission agreed.

The regional health authority, Tyson, Amelia, and the MHRC reached a settlement that created the Integrated Adult Services (IAS) pilot project. For two-and-a-half years, the pilot worked with 33 Manitobans living with disabilities using a fundamentally different approach. Instead of delivering services based on diagnosis, participants received individualized, flexible supports based on their actual needs and goals.

It worked. The pilot demonstrated that when government starts with the person instead of the existing programs, people thrive.

The final report, Equality, Dignity, and Belonging; Building a Better System for People with Disabilities in Manitoba, draws on the pilot project and extensive consultation with more than 200 Manitobans. It sets out 13 recommendations that provide a practical roadmap for transforming disability services in this province.

When the report was released, Families Minister Nahanni Fontaine, the minister responsible for accessibility, said “My mandate is clear: ensure Manitobans with disabilities have a voice in the design of disability support programs.”

That commitment matters.

It means, first, that Manitobans with disabilities must be consulted on which services they need in their personalized, individually designed care plan.

It also means that the disability community must be at the table in designing and implementing the new disability services plan for Manitoba. We need to be part of the path forward, involved in a meaningful way, not as a tick box representing consultation.

We welcome Min. Fontaine’s commitment.

But we are disappointed we have not heard the same commitment publicly or privately from Premier Wab Kinew. We are asking the premier to champion this work across government and commit to implementing all 13 recommendations.

This is not about tweaking an outdated system. It is about replacing it. The work requires a whole government approach.

For too long, Manitobans with disabilities have been forced to navigate multiple departments, duplicate paperwork, repeat their stories, and advocate endlessly for basic supports. Government works in silos while people fall through the cracks.

There should be one point of entry into the system. Government departments should co-ordinate around the individual, not force individuals to coordinate government.

One of the most surprising discoveries over the decade since Tyson and Amelia filed their human rights complaints has been how little data exists to evaluate whether Manitoba’s disability services are actually working.

There is no meaningful way to measure outcomes, assess success, or identify where the system is failing.

This is not about assigning blame. These programs have evolved over decades under governments of every political stripe. But the absence of meaningful data is itself evidence that the system needs rebuilding.

The next system must be person-centred, flexible, and accountable. It must be able to evolve as medicine advances, technology changes, and our understanding of disability continues to grow. It cannot remain frozen in assumptions made decades ago.

The disability community has been asking for this change for generations. We are tired. We are frustrated. But we are not going away.

We are not asking for charity or special treatment. We are asking for what every Manitoban expects — the opportunity to pursue education, employment, independence, and community life with the supports necessary to make those opportunities real.

This transformation will take time. But if there is political will, Manitoba can build a modern disability services system within five years.

The blueprint already exists.

Bring us to the table. Work with us. Implement the plan.

If government chooses not to act, then we will have little choice but to return to the Human Rights Commission.

Because Manitobans with disabilities should not have to fight for rights that should already be theirs.

David Kron is executive director of the Cerebral Palsy Association of Manitoba.