Motability limits mobility

Please read below, written by SMA Community member George who is 14. He eloquently expresses the concerns around these changes and the impact they will have:

When you live with a condition like Spinal Muscular Atrophy, winter isn’t just a season. It's a period of constant risk. Cold air, damp weather, circulating viruses, overwhelmed hospitals. All of it matters. Because for us, a “simple cold” isn’t simple. It can mean serious complications, turning everyday illnesses into something dangerous.

So we adapt.

We stay home more. We avoid crowded places. School attendance becomes less, not through choice, but through necessity. Often, we turn to homeschooling, working from home, doing everything we can to reduce exposure. We protect our health by stepping back from the world.

And then warmer weather comes.

And for a brief window, we get to live. To go out. To explore. To experience life beyond four walls. To make memories.

That freedom relies heavily on something many take for granted: accessible transport.

For us, that’s a Motability vehicle.

But even that isn’t simple.

The scheme takes my higher rate mobility benefit. Families cover fuel costs. Many have to find thousands upon thousands of pounds upfront as a down payment or go through a scrutinising process to qualify for a grant. And after all of that, you don’t even own the vehicle. It's a lease.

Now, there are conversations about restricting how far disabled people can travel in the vehicle?

Our lives are already dictated in so many ways:

Where we can go — based on accessibility.

Where we can live — based on suitable housing.

What education is available — based on inclusion.

What equipment we can access — based on limited provision.

Every part of life involves fighting unless you have financial means to bypass the system entirely.

And now our right to travel, to experience life when it is safe, is being questioned and potentially limited?

For many families, travel isn’t a luxury. It’s a lifeline.

Some of us travel long distances for specialist care because it isn’t available locally.

Many can’t use public transport or fly due to respiratory equipment, accessibility, or safety, so we rely on our vehicles, not for convenience, but for survival, care & quality of life.

This isn’t about miles. It’s about dignity, equality, and the right to live fully.

Please sign the petition here ➡️ https://petition.parliament.uk/petitions/752400