Routines with a Disability

It's amazing how much time you get back when you're intentional about screen time. I can’t go completely screen-free, but I can be mindful of how much I watch and what I engage with. This is something to consider when creating a routine—taking into account your needs, existing supports, and whether you have access to paid support workers or the equivalent in your country. It’s also important to consider what you feel safe having them do.

Yesterday, I had a moment that reminded me that, although I am higher functioning, I still need support. These posts serve as much as a reminder for me as they do for others—about routines, being responsible, knowing where your money is going (which I’ll cover in a follow-up post), and speaking up when things go wrong. There are people—both paid and unpaid—who will help if you're willing to advocate for yourself.

One key factor in setting up a routine is having a consistent support team. If your care team is constantly changing, it can be frustrating and even cause mild anxiety. Building relationships and trust with support staff is essential, but a sad reality is that we often have to assume, until proven otherwise, that some support workers are in it only for the money. Some will leave when a better shift or client comes along, and others may struggle with the realities of the job because social media doesn't always portray the full picture of working in the disability sector.

I respect support staff, but I’ve also been frustrated by certain aspects of the system. When trying to establish a routine, it’s clear that some older support workers—especially those who worked under block funding—struggle to adjust to the person-centered care model. Many believe they are right, and when presented with evidence to the contrary, they take it personally. I understand why—working with people can be challenging, and some clients exhibit difficult behaviors, including lying, manipulation, and jealousy-driven actions. However, all behavior is communication. The key is to understand what need the person is trying to meet and address that rather than just the behavior itself.

For many people, a routine provides a sense of security. If they know who is coming, what is happening, and when, they feel safer. I’ve experienced this firsthand. While I have low support needs, I do not have no support needs, and recent events have reinforced that for me.

The Importance of Documentation

Inconsistent support from agencies means that sometimes, you have to be ‘that person’—the one who documents everything. If a service isn’t delivered, don’t pay for it. Use client communication teams and advocate for yourself. If you are unable to, there are organizations that can assist. Documenting support dates, times, and staff names is important. If a shift is canceled and they charge a cancellation fee, you should be able to challenge it. While I can manage unexpected changes by relying on my housing team, family, or friends, some people cannot, and this can lead to serious harm.

Lack of consistent support can also lead to extra expenses. For example, if someone cannot cook, they may need to order takeout or even skip meals if meal support isn’t available.

What Should a Routine Look Like?

A routine doesn’t have to be complicated, but it should be flexible and work for you, not the service provider. You are in the driver’s seat.

Here are some key components to consider:

Cleaning: Your living space should be maintained regularly. Tasks include:

• Cleaning out the fridge, meal prepping, washing dishes, vacuuming, and decluttering.

• Checking expiration dates on food, medications, and makeup (due to bacteria buildup).

• Washing bedding, including pillowcases and duvets, and checking any medical aids (e.g., CPAP machines).

• Removing old magazines and organizing paperwork—either filing or scanning it into a computer.

Paperwork & Budgeting:

• Managing paperwork is part of decluttering. I work with a family member on financial matters to maintain privacy.

• Budgeting can be challenging, but tracking your spending helps. Writing things down can reveal where money is going and where savings can be made.

• Reviewing annual expenses like insurance can prevent paying a ‘loyalty tax.’ Calling companies and asking for a better deal can save money.

• There are charities and work skills programs that can help stretch budgets, especially for those with limited income.

The Balance Between Routine & Variety

While routines provide structure, they shouldn't be too rigid. Activities should go beyond the usual day service, library, pool, or shopping center. While these are fine, doing the same things repeatedly can be monotonous. I’m creating a series of videos on alternative activities to do with a support worker.

When it comes to finances, it’s important to recognize that you can’t budget your way out of poverty, but you can make informed choices. Less clutter can reduce stress and make cleaning and organizing easier.

Final Thoughts

Support workers should advocate for your goals, not what they think is best for you. They need to presume competence while identifying and addressing skill gaps. Ethical independent advocates can sometimes bridge the gap when needed.

It’s also crucial to maintain friendships outside of your support network. Support workers are not your friends. Having relationships outside of paid support provides a level of protection if something goes wrong.

In the end, a routine should work for you and help you live a fulfilling life—not just make things easier for service providers. Establishing a solid routine allows you to create a budget, save money, and ultimately have more control over your life.