Nicole Telfer (she/her, disability and inclusion practitioner): Having services in your home can be a big adjustment. Your home is your safe space and you need to feel safe with people coming in and out of your home. All family members need to feel safe with that person or that service coming in and providing support.
Dee (parent of Max and Oscar): Setting expectations for what's okay and what's not okay in our house is complicated by the fact that the service providers aren't actually necessarily working with Tash or I, so they're working with a minor child. So we have to be really clear what is and isn't acceptable from the get-go.
Jax Brown, OAM (they/them, LGBTIQA+ disability educator): Having people who provide support that understand our rainbow family, understand pronouns and understand gender identity stuff is really important for me to feel safe to ask that person for the kind of supports that I need. To feel like they're going to understand how to refer to me as a parent for my kid, utilising my pronouns and that kind of stuff has really been important for me in terms of feeling connected and safe to those people as well.
Nicole Telfer: It can be difficult for children, especially older children to have services and people coming into their safe space. Having conversations with your child and with the service provider are really important to be clear about the roles and the responsibilities, the expectations of the service, and how they work with your family. So what's okay to do in your home, what's not okay in your home, how you want them to talk about your family and things like privacy and confidentiality. By talking about those things and then having regular check-ins about that with the service provider can make sure that everybody feels safe and everybody is clear about those expectations.
Dee: All Max's therapists currently attend the house to see him. That means at the moment, speech therapist, occupational therapist, psychologist, dietician, exercise physiologist, and physiotherapist all attend our home to provide services. Keeping the house safe for everybody when you've got people in and out all day long can be a bit like managing Grand Central Station on a given day, and it can feel chaotic but it's worth it to keep that safe space of our home.
Jax Brown: I guess one of the ways that I've tried to avoid feeling like I have to educate people in terms of the kind of services and supports that I might want for the LGBTIQA+ sensitive to me and my family is by hiring people that share some of those intersections so that they're already going to be across gender diversity, for example, and they don't necessarily have to do some one-on-one education with that person.
Caz (parent of Sam): There are things that you need to communicate to other people frequently so you do end up becoming a bit of an educator to anybody who's within your home.
Dee: And that can be a challenging conversation. You got to correct somebody who's coming into your home to help your child and yet, you've got to redirect that service provider away from something they've said or something they're doing. You've got to redirect them in such a way that it doesn't damage their relationship with Max and that can actually be the trickier part of it all.
Jax Brown: I self-manage my plan and even though that's a lot more work in some ways, it really enables me to then choose the people that I trust, that I know, that share some of my identities. I feel comfortable with them coming into that intimate space of my family life.
Caz: Initially, when I am engaging a service when it comes to care for Sam, when there's someone caring for him and I'm not there, a lot of that I do in writing. I do a lot of quite specific instructions in terms of how I would like things done because Sam needs to feel safe in his routine. So I need that person to continue with Sam's routine so that he continues that feeling of safety.
Dee: With Max's support workers and therapists, we have a WhatsApp group which lets us all share information quickly and easily about any problems that have come up. But it also means that if I need to share some information about what Max is currently finding challenging, I can share it once and I don't need to keep repeating it every time somebody comes in the house or every time somebody's got a question about why maybe something has been a bit more challenging in their session.
Caz: In terms of safety in my home for me and for my son and for my son when I'm not here, a lot of the doors in the house are locked because Sam has no sense of danger. There's a lot of visuals around the house. Even on the front door, there's a visual to say you need to lock it like this because Sam can open this door.
Jax Brown: I've gone about it in terms of outlining it usually in a little bit of a written form or having a bit of a phone conversation and then writing down what I would see is the main task that need to happen. Then trying to have an ongoing conversation about how the relationship or support is working.
Nicole Telfer: We know that some people have experienced intrusive or inappropriate questions. If you find yourself in that situation, it can be really useful just to ask the person why they need that information and if they don't need the information then you don't need to be an educator for everyone. It's okay to put some boundaries around how much information you share to keep you and your family safe.
Caz: In terms of being an activist, I find that's not all that necessary inside my home but it is necessary in the community. I've had people ask me around these things and I will happily explain it to them because the more you share the knowledge, the more acceptance there is in the community. So it has happened on occasion where people have asked me questions that are intrusive and I don't feel they have a right to know that information.
Dee: Sometimes it is just being nosy and it's making people stop and think about, why am I actually asking that question, before I answer it. Usually, that makes the question go away or gives me an insight into what they really want to know. Just because something appears irrelevant or intrusive on its surface doesn't mean that's what's driving the question. I don't avoid being an activist and an educator all the time, and not just of other people but of myself. So I'm constantly challenging my own assumptions about things. Because all our services for Max are based in our home, our home can't be advocacy-free.