Good care is hard to find… Literally. How do you find, hire and keep good personal support workers, and what to do if it doesn’t work out

Welcome back to Caring About Sex and Disability.

We talk about care in the disability space a lot, but one of the areas that we rarely talk about in the space is how we, as disabled folks, find, hire and keep good care staff.    What should you consider when recruiting?  What boundaries are good to have between you and your care staff?  How do you present yourself to the prospective hires, and what do you do when things just don’t work out between you and your care staff?   These are some of the questions that I want to tackle on the blog today, so let’s crack into it. 

Some Things to Consider When Recruiting Care Staff

1. Be Upfront and Honest About Your Needs 

This one probably comes as no surprise, but I think it’s really important to be upfront about your care needs as a disabled person. Sometimes, when I am recruiting care staff, I find myself downplaying what my needs are so that a person will want to work with me and not get scared off by the possibility of care needs.  I would recommend not doing this.  I think it is far better to lay out exactly what your needs are including the bathroom needs, and things that may seem complex.  If you need your bum wiped, put that in the requirements.  If you need suction from a trach, put that in there too.   You don’t want to hire someone and then need them for help bum-wiping and they can’t handle it.  Trust me, I’ve been there myself, and it isn’t fun. 

2. Be Honest About Who You Are 

Receiving and providing care is one of the most intimate, vulnerable, real things that two or more people can do together.  I would venture to say that it can even be more intimate than sex.  Because care requires a closeness unlike any other, you should be comfy being yourself.   If you are queer, trans, non-binary and want queer-centric carers, put that in the application and don’t be afraid to hide it.  So many 2SLGBTQ+ feel the need to hide their identities with care staff, fearing that if they come out and be open, they’ll lose care and that’s extremely hard to navigate.

3. Put your requests for care everywhere!

There are organisations that you can go to to request a carer, but as so much of the care world is becoming privatized, it is often on us to get the word out there to find care.  I have found incredible friends and carers by posting on Instagram, Facebook and Twitter.  Putting them on these platforms expands your reach exponentially, and reminds folks that there are disabled folks who need care in their sphere, and I think that is an important part of putting care needs out there.  For my last work trip, I hired someone that I had connected with over Instagram, and we had the most amazing time.  So, put it out there; social media can be good for some things… and who knew that finding decent care was one of them?

What boundaries do I set with myself and my caregiver 

While you want the relationship with your carer to be friendly and open, it is important to remember that it is a working, transactional relationship.  You can choose what you feel you want to disclose about your personal life to the carer and vice versa.  To be honest though, I have found the boundary setting sometimes difficult, especially if you want to foster a more friendly relationship, and that is why I think it is so important.   It is also important to consider boundaries because you are hiring them; so, it’s important to think about their comfort level too.  This may be as simple as asking them during an interview, “What are you comfortable with?” or “what are your boundaries?” and letting the conversation flow from there.

You also have to be prepared for what to do when a boundary is crossed.  Personally, I hate confrontation with my care staff.  I feel like the best thing to do here is go with your gut.  If the worker crosses a boundary once, you can correct them.  If they do it again, you may need to let them go, depending on your comfort level.  Don’t keep a care worker around that makes you uncomfortable – it isn’t worth it. 

What do you do when things don’t work out with a carer 

People who don’t receive care can’t truly understand the grief that can happen for disabled people when you lose a carer due to an incident or a betrayal of trust.  Due to the intimacy that care requires, that grief can take many forms: anger, withdrawal, lashing out at others, feeling extra vulnerable around a new care staff.  It’s important to process those emotions, but I also know first-hand that it can be hard to reconcile the fact that many of us will need care all our lives as disabled people, and we will be in the position of having to let care staff go.   That’s hard.  There’s no way around that.  But, stand firm in what you need for your day to day, and if the carer can’t meet those needs or has done something that hurts your relationship, you need to let them go.   As frustrating as it can be to have to constantly start again with a new person, know that the new carer might be someone you’ll have in your life a long time.  Recognize that you have the opportunity to open someone’s world up by caring for you, and that is quite a powerful thing.

I hope that today’s blog gives you some avenues to explore around finding good care, and offers some pro crip tips for keeping them around while also ensuring that your autonomy as a disabled person.  

Until next time – I care about you. 

Andrew Gurza