Building Foundations: The Importance of Organization in Supported Living"

I naturally struggle with organization, but living in supported living in Australia and attempting to live independently (despite not fully succeeding) has taught me the importance of being organized. Some people have the advantage of parents or caregivers who emphasize the significance of organization alongside education, which certainly helps. I’ve discussed the challenges that come with having a disability and trying to stay organized on my YouTube channel, and I believe there are several factors everyone should consider.

Now that I have clearance from my GP (primary care doctor) to look for part-time paid work, I realize there are skills and general health considerations I need to work on. Some of these are innate, stemming from my family background, but the most important thing is establishing a routine. Routines offer stability, especially for those with psychosocial disabilities, and having well-trained, consistent staff is crucial, though this will look different for everyone.

When someone enters a care program, an assisted living facility, or a group home, there will be a period of adjustment. I would urge families to do their homework because, realistically, some facilities are better than others. I’m fortunate that my supported independent living (SIL) home has developed strong routines and a great team, but it took time to get there. If you’re working with more than one agency, some planning will be required, especially considering what they can and can’t do due to privacy and insurance regulations.

For instance, a team responsible for community access may not be able to enter the house, but in some cases, they might be able to do a handover if the person isn’t able to communicate for themselves. It’s also important to set aside time each week to plan for the upcoming week, month, or even year. There are plenty of tools to help with this, and how involved a person is in planning their day depends on their level of function.

I’m particularly speaking to those in the low-support needs or higher-functioning communities who can have a say in their care. We also need to consider the concerns of family and friends. To me, person-centered care doesn’t mean disregarding family concerns but rather working with them as part of a team. My community access and housing teams have worked hard to build relationships with me and my family, which has been incredibly valuable.

Before establishing a routine, we must address the reality that support work takes time, and not every support worker is a perfect fit for every individual. It’s important to recognize that support work is challenging, heavy, and emotional.

The first step, especially if someone has experienced medical episodes, mental illness, or behaviors of concern, is to ensure their living environment is hygienic. If they live alone, you might need to assess whether they need a cleaner, though it’s preferable if they can handle it themselves. This is something support staff should stay on top of. Next, focus on nutrition, building cleaning and meal planning/preparation into a daily routine. Once these basics are established, it’s time to think about what they will do for the rest of the day.

Teaching about priorities is essential, and budgeting both time and money may come into play. Medical appointments need to be recorded, whether in a diary or on a calendar, and transport, interpreters, or a companion (such as a trusted support worker or family member) might need to be arranged in advance. It’s important that the person is able to read and write, and while a strengths-based approach is important, we also need to be realistic about any deficits and work on ways to address them.

When support isn’t available 24/7, as in a SIL or other facility with around-the-clock care, we must consider the darker side of inadequate or inappropriate support. If staff neglect their duties or if the person hasn’t been taught basic skills, such as keeping their space clean, it’s crucial to address these issues. It might be a bedroom, a lounge room, or chores within a SIL home, but we must be understanding and recognize that raising a child, especially one with disabilities, is a difficult task.

There are programs available to teach life skills, though we see in the general population, particularly in the U.S., that home economics is no longer a staple in schools. In Australia, we still have home economics, open to all genders, but there may be resistance to receiving help. It could take months of teaching and prompting, but the focus isn’t just on cleanliness. They may need assistance with budgeting for laundry facilities or upgrading cleaning items like a vacuum cleaner, washing-up liquid, and laundry detergent.

Decluttering might be the first task before even thinking about a routine. There are many apps, blogs, and TV programs that can motivate them, but a professional organizer or a psychologist specializing in disability and clutter might need to be brought in. As I was writing this post, I realized I had an advantage in that having a clean and presentable home was a priority in my family home, so I was taught how to do laundry and organize my clothes into storage. This might also need to be taught, but I take pride in working with a support worker to keep my space clean and organized.

It’s not just about cleaning or decluttering; it’s also about deciding where the clutter goes. If it’s rubbish, it goes in the bin; if it’s old clothes, they can be donated or passed along. Some people may need reminders or education around personal hygiene, such as proper disposal of period care products. Items like gloves and a bin may need to be provided, and education about how often to wash hair, brush teeth, and put together an outfit might be necessary.

In my next post, I’ll discuss who can help with this kind of education, as there are many people in the community, sometimes those you least expect, who can provide support. However, I see that this is the core of a support worker’s role: educating someone on how to present themselves, manage a house, and when to accept help. A professional cleaner might be the best option for someone with limited energy or mobility issues.

It’s important to distinguish between “can’t” and “won’t,” and sensory issues may play a role. For instance, someone might have sensitivities to smells or touch, so gloves and unscented cleaning products are a must. If someone is inclined towards a more alternative lifestyle, we can explore hygienic ways to reduce waste. While it’s impractical to expect zero waste in the disability community, less waste is a positive step.

Once a person is organized, we can start looking at education, hobbies, and perhaps day trips or a day center. But all of this needs to be built on a solid foundation of a clean person and a clean environment. This aligns with what Dr. Jordan Peterson says about cleaning your room: if you can’t keep your living space in order, how can you manage larger aspects of your life, including accepting different viewpoints?

In the next post, I’ll provide tips and tricks for motivating someone to do what can be a boring, repetitive job. But the less clutter they have, the easier it becomes. I’m not talking about organized collections that are hobbies, like CDs, DVDs, or fabric. I’m talking about items that have outlived their usefulness—empty bottles, broken cups, worn-out clothing. Let’s keep working together to help people get organized and clean, as this can reduce behaviors of concern by minimizing stress over clutter and uncertainty about where to start.