…but it could be.

This post is brought to you by the several months of trying to get a new support worker approved. I might be a little frustrated right now.

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Home and community-based services are a lifeline for us, and I am incredibly grateful. They help us access the world around us. It empowers us to live our lives on our own terms, ensuring both dignity of risk and safety in our communities. 

That is… when it works.

When it doesn’t work, it’s a nightmare. 

These services are life changing, but that doesn’t matter if you can’t access it.

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Here where I live, it’s been difficult for me and other families.

It starts all the way in the beginning. The process to apply itself is chaotic and stressful, and the requirements are very stringent. If you make it past that, here comes the Waiting List.

Waiting lists are horribly long and don’t always make sense. Sometimes, people feel like they’ve been forgotten about – and that’s a terrifying thought when we and our loved ones already worry about our future. 

Even when you do get into the program, that’s not a guarantee that you will receive services. Staff are severely underpaid and under-trained, some areas simply don’t have resources, and it can be difficult to navigate. More decisions and paperwork has to be done, and it’s exhausting.

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The entire process is cognitively inaccessible – which is very strange, considering these services are for people who often have intellectual and developmental disabilities. There’s not enough plain language documents or clear communication. All the agencies, the procedures, the acronyms – how do they expect people to navigate everything? People with disabilities and their families are at the mercy of a system made of red tape and bureaucracy. 

But when you finally get approval for funding or specific supports, the services cliff somehow gets steeper. 

• Affordable and accessible housing? Mmm… no.
• Behavioral health options? Abysmal.
• Speech therapy? Maybe if you live closer to a less-rural area.
• Occupational therapy? Good luck if you’re over 18.
• Respite or support staff? Depends if there are any people that you trust – and are willing to work for low pay/no benefits. 

Added to that, a lot of us are living paycheck to paycheck; neither us nor our families can afford supports that we need. These services are so desperately needed, but a lot of people feel like they’re being neglected and ignored. 

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I will always be grateful for home and community based services. They’re the reason I’m able to do things like conferences, meetings, or even have the energy to write this post. 

Still, there’s so much room for improvement – better funding and training, increased accessibility, more availability of the supports we need. 

And most of all, we need a shift in perspective. Services are so focused on how we and our lives can be productive to society or the economy – but not about how productive life can be for us. 

 

• Advocacy
• Reflections