It’s time to stop people from falling through the gaps

Opinion

I am not here to lay blame or point fingers.

We live in the reality that governments change hands and one administration’s priorities might not be that of the next.

We also live in the reality that some change, big systemic change, takes time and might not come to fruition in one term. Or two.

What happens then? Well, in the world of advocacy for human rights, we cannot give up but often we must start over. Educate once again. Offer insight and solutions. And be prepared to rinse and repeat.

Unfortunately for my daughter Amelia, she did not have the time on this Earth to realize success in her fight for basic human rights for people living with complex physical disabilities.

I wrote to the Human Rights Commission in 2012 to complain about the lack of services and support for people with physical disabilities. Separately, Tyson Sylvester also complained to the Commission, so on July 9, 2016, Amelia Hampton and Tyson Sylvester filed human rights complaints against the Manitoba provincial government and the Winnipeg Regional Health Authority (WRHA).

At issue, the “formula” by which the provincial government decides on who does or does not have continued access to proper care and supports once reaching their 21st birthday.

Imagine if your child or grandchild was told they no longer mattered in life, in society. Imagine that whether they attain all their hopes and dreams, or even the ability to chase those hopes and dreams, was determined by faceless government bureaucracy and rules.

This is the reality for Manitobans living with complex physical disabilities. But they do matter, my daughter mattered. Amelia saw the unfairness, the disparity, and decided she was going to be a gamechanger. That in her life, she would do all she could to make things right.

Transitioning from being a teenager to adulthood is hard for everyone, it can be a fragile time in any person’s life.

For Amelia and Tyson, they carried the extra burden of worry wondering if they would be deemed worthy for continued health and social supports to live the full life they planned for themselves.

Growing up, they both benefited from the care and support provided with government funds through the public school system and Children’s Rehabilitation Centre for their emotional, physical, and special health needs. All this abruptly ends at the age of 21 if the person living with complex disabilities does not also have intellectual disabilities.

For many, losing their supports is the difference between getting a job, going to post-secondary school, and living independently.

In a way, both Amelia and Tyson were fortunate in that during their Human Rights case proceedings, the Manitoba government and WRHA agreed to a pilot project, the Integrated Adult Services Pilot Project. The project started in 2021, five long years after Amelia and Tyson spoke out publicly to fight for their rights and those of all Manitobans living with complex physical disabilities.

Amelia was with us to see the glimmer of hope that life would change for all kids living now, and to come, that they would have a much different prospect in life and the right to live life to the fullest.

Sadly, my beautiful daughter, so full of light and happiness, isn’t with us to see this project to its end. She left us just over a year ago.

While Amelia is not here to witness the outcome of her work, there is some solace in that she no longer needs to worry about growing older in a system that has no room for her. Amelia worried about the moment her dad and I would leave this world — what would happen to her then?

We worried, too. What would become of Amelia once we were gone? Who will warm her jacket and mitts before putting them on in the cold of winter? Will someone look after her? Every single day, all three of us thought about death, and what it would bring. Now, we must focus on her legacy. We celebrate her drive, we think about Amelia’s dream to be a gamechanger, and we continue her fight.

So, Amelia is not here to use her strength and wisdom to convince the government and WRHA to embrace the IAS findings and recommendations.

But her mom and dad are here, Tyson and his family are here, and our long list of supporters who see the wrong and walk with us in the fight are here. The IAS wraps up this fall, in just a few short months. It’s been more than nine years, almost a decade, since Amelia and Tyson filed their Human Rights challenge, and we are holding our breath as the final report is prepared for consideration.

There is no doubt the provincial government and our premier, Wab Kinew, have a lot to digest right now. Between the rising cost of living, record numbers of unsheltered citizens, and a dying healthcare system, there is much work to be done.

With so much going on, people and their concerns can fall through the cracks. In my heart, I know this is where my dear Amelia fell. Between the cracks.

What a wonderful birthday present it would be for Amelia and to honour her memory if on Jan. 5, 2026, the government decides to embrace the recommendations coming from the IAS.

It marks what would have been her 34th birthday. I can think of no better gift for Amelia, Tyson, and all families supporting and loving their children living with complex physical disabilities than to have the provincial government say, “Your lives matter. Here’s what we are going to do.”

Charlene Hamel Hampton writes from West St. Paul.