I’ve previously written about Understanding Hurdles to using Disability Support Workers. Here’s some approaches that can be helpful when you’re dealing with hurdles like those. Not every agency or organisation or support worker will be on board with all of these options, they all run in their way and have their own limitations – however even if they can’t help, they should never shame you for what you need or would find helpful. You have every right to ask, to advocate, and to try different approaches and discard what doesn’t work for you. Remember it’s never just going to be you that finds this hard, or that needs that approach. When we ask, we make it a little more normal and a little easier for everyone else too.

Start with the Least Stressful Task

Pick the easiest task. You might have complex support needs and circumstances and be totally overwhelmed, so maybe this isn’t the week for someone to come and assist you in showering, or taking notes during your psychiatrist appt. Sometimes it’s easier to get started with the simplest task. That might be someone to wash the dishes a couple of times a week. It might be driving you to the physio on Thursdays. It can seem stupid to book this in when there’s so much going on and so many unmet needs but just getting a thing handled for you is an excellent place to start and can get past the block and freeze to having any support at all.

Avoid Relationships

Don’t set up a Support Worker, set up someone who functions as a taxi driver or cleaner. If the relationship with a stranger is part of the stress for you, start with an impersonal service. You can request a Support Worker or cleaner do tasks while you’re not even in the room or house. You can ask to be driven to an appt and home and explain when you book that you’re stressed by conversation and to please not engage with you. Deal with having them around before you have to adjust to having some kind of relationship. Sometimes this can make it manageable.

Just work on the Relationship

Alternatively, forget the tasks for a bit. Just do something you enjoy and get to know this other person. Play a board game. Take a walk. Go for a swim. Watch a movie and discuss. Do downtime not stressful stuff and build a connection.

Delegate

Get someone else to hire and supervise. If you have a trusted friend or family member, they can help get the ball rolling for you.

Do a Graded Increase of Supports

Start small. You might be funded for 30 hours a week but the thought of that is terrifying even though you really need it. Maybe you need to start with 2 hours with a Support Worker. Organisations may try and jump you straight to a full schedule of supports and for some people this is completely the wrong approach. Once that 2 hours is feeling manageable, perhaps in the third or fourth week, you might want to extend it to 4 hours, or keep it at 2 but get them in twice a week. A soft, flexible start like this can be essential to having the support be helpful instead of feeling like a crisis to manage. Not every agency or worker will allow you or be able to do this, but some definitely will.

Get a Lead Support Worker

Start with an experienced Support Worker, and as they learn about you and your needs, get them to onboard and train your team. They can be the key or lead Support Worker and you can use them to help with communication, relationship, training, and rostering. They can function as your executive assistant and the team leader.

Keep them Outside

If having people in your house is terrifying, don’t let them in. I have worked with many people who have needed all supports to be out of the home at first. You can do online support where someone calls or video calls and helps with your admin. You can meet in a public location like a library or park. You can sit on your porch together. You can get in a Support Worker to help you in the garden and do that together every week for as long as it takes to feel safe to let them in your house. You can have a friend or family member with you every shift at first. You do not have to do the ‘typical’ support stuff if that is just beyond you. We are here to actually help and sometimes that means being really flexible, really gentle, and moving at this very slowly.

Just be aware Support Workers are people who do need access to shelter, water, and toilets so you may need to make sure there’s other options if they can’t use your home.

Alternative communication

The entire disability sector is oddly oblivious to the need for a variety of options for communication. Many people are deeply stressed by phone calls and prefer text messages. Or find emails impossible and need mail. Or do best on video calls. If you find discord easy you are absolutely allowed to ask to communicate with your providers and Support Workers there. Some organisations lack the flexibility to engage in different ways, but many smaller ones or independents will absolutely understand this need and it can make so much difference to managing a roster.

Explore your Overwhelm

If this is one of the big issues for you it might help to explore and understand it some more, perhaps with a therapist or friend. Good Support Workers will absolutely be able to help with this, but there’s many things than can drive overwhelm and some of them will actually get worse if we approach our Support Worker through their lens and recruit them into the same factors. Some more thoughts here: Finding Ways out of Burnout and Overwhelm.

Guides and checklists and labels

If you set up the spaces in your home you are using Support Workers so they can easily tell what is needed, you will have less irritating variation, and less need to train them. This is a great option if you have a larger team, a lot of staff turn over, or a horror of training staff. If this makes you feel like you’re living in a hospital or facility then absolutely don’t. However many multiple people households, especially with kids or multiple people with disabilities, find having labels and clear systems can make a massive difference to the smooth running of the home. The kitchen is an excellent place for labels on draws, photographs of what content should look like, labelled food storage, and simple check lists of what resetting the kitchen looks like. In my home I tell staff that if they can’t work out where something goes, leave it on the bench and I’ll go through them at the end of the shift – I vastly prefer this to losing items that have been hopefully stuffed into random cupboards!

Never have just one support worker

This is a tough one. When getting started has been hard and you finally have a good one it’s so tempting to stop there. A basic rule of thumb is that every participant needs more than one Support Worker, and every Support Worker needs more than one participant. The degree of vulnerability if you only have one person is so high and it runs both ways. Support Workers need to know they can take a sick day without your world falling apart. You need to know a Support Worker can leave without the sky falling. Losing a good Support Worker always sucks, I hate it. But when you have at least two on your team you can limp along while you recruit. If you only found one good Support Worker in the world, it can be an impossible ask to look for another one, and to go from someone who has known you for months or years and is now highly attuned to you, back to the start with someone who has no idea about your story, your capacity, your needs, can be more than people can deal with. Don’t stop with one. Good, experienced Support Workers know this and will encourage and help you not to stop with them.

If you’ve struggled to get going with Support Workers and have found something else that has helped you, please do comment or message me and let me know. There’s so many folks out there feeling stuck. I have my own deeply personal experiences of how hard it can be to let people help, how essential it is to feel safe..

I hope this gives you permission to go off the beaten track if you need to. Hurdles are common and there’s many ways around them. Good providers will create an alliance with you to help navigate them, and there’s many, many great Support Workers out there who are keen to help in the ways that will work best for you. These ideas can be put into practice with any providers or independent Support Workers, and you’re certainly welcome to get in touch with me and my team if we seem like a good fit. Best wishes and take heart. You’re not alone, and for most of us it gets easier.