When accessing mental health support services impacts on mental health…!

Dear Connect to Wellbeing,

This is an open letter. The purpose of sharing this letter is to educate and make people aware of the impact their actions have on others. This is why I have avoided using names.

The key elements of the Connect to Wellbeing service include holistic assessment – a person-centred approach to determine an individual’s needs and determine relevant support services; as well as working with the individual to ensure the right service is available at the right time. Apparently there is a “No Wrong Door” approach to access fast and easy access to the right mental health support at the right time. In the FAQ on the Connect to Wellbeing website, it is stated the person will be contacted within three days and an initial appointment will be offered within two weeks.

Waiting two and half months to contact me is unacceptable (The GP referral is dated 29/10/2018, I was not contacted until 23/01/2019). While I can accept our GP neglected to indicate I was deaf on the referring paperwork, this was not the problem in this situation. The problem here is how one of your staff members responded once they knew I was deaf. Surely your organisation should ensure all staff receive training in communication with people with disabilities or mental health issues?

When I was contacted, it was on the phone. I missed several calls, because I am deaf. When my partner showed up, I gave him my phone.  The person on the other end was a female staff member from Connect to Wellbeing at Neami National in Cairns, wanting to do intake for our daughter.

My partner informed the staff member on the phone, he was not the right person to talk to about our daughter, and they needed to speak to me. However, the person argued with my partner and tried to force him to just answer their questions, by telling him intake could only happen on the phone. Perhaps staff members should be informed of the following statement on the Cairns Neami National website: “The centralised intake service is accessible online, via phone or email.”

When my partner told this person on the phone I was deaf, and could not speak to you on the phone, he still meant I was the best person to talk to. My being deaf didn’t change that! As we were already on our way to Cairns that day, he said we could come into the office for you to speak to me in person – and he had to argue to do that too as the staff member was not open to it.

So, we made our way into the Cairns office, and were invited into a meeting with two staff members, one of them being the same woman who argued with my partner on the phone and left him in quite an agitated state. The other person was a man, and only a couple days new on the job.

In the meeting, the same female staff member proceeded to chat to my partner, not me. The expectation was obviously clear – he was expected to translate for me. He did his best but was getting frustrated and was also not absorbing the information that was being presented either. He has this difficulty at the best of times given his own mental health issues which the staff member was aware of. He explained again I am the one who manages stuff, organises stuff, and knows what’s doing, and they needed to talk to me.

I knew my partner was struggling with trying to take in information, as well as interpret and keep me in the loop as best as he could. I was essentially forced into an onlooker position as I could not participate in the conversation. I also was reluctant to put more stress and responsibility on my partner by asking him repeatedly what was being discussed. It was utterly ridiculous I was left out of the conversation like this. It is worse this staff member put the brunt of this responsibility on my partner. Just because he can hear, did not mean he was in a position to absorb this information well, nor in a position to remember it all and convey it to me later. Just because he is hearing, doesn’t mean he can utilise this information and use it later on to our advantage. Both staff knew he had a mental health condition as well as he was the other name on their list, not just our daughter’s.

I was forced to rely on lipreading for the majority of the meeting, missing most of it anyway. In the end, I just gave up all that intense concentration and sat back. It was not like this woman was making much effort to include me properly and ensure I got her information. At least the newbie was attempting to include me in his eye contact and body language with the same regularity he was my partner. They both even had a pen and pad each, yet neither of them bothered to attempt to talk to me directly using written communication. It was like I was invisible seeing as there was very little eye contact from this woman who was obviously in charge of the meeting. I was effectively excluded from the conversation, and the funny thing is, there were barely any questions asked about our daughter whom the intake was meant to be about.

When my partner told the staff members during the meeting he was unable to interpret, he meant they needed to stop talking to him, and talk to me themselves. He meant, figure it out! Don’t put him in the middle like that.

When he asked me if I was getting any of this, he meant he also wasn’t. He also meant for them to hear this, to let them know I wasn’t getting any of this either.

I have some questions for you to consider now. If I was the best person to be talking to about these issues, why did they continue to talk to my partner? Why did we travel to your office, for me to sit there and have them talk to him?

Why didn’t this staff member take a step back when my partner told her I was deaf? Why did she argue with him about us coming to your office instead of taking the time to consider how she would be talking about these issues with me?

Why when my partner suggested some alternatives, did she continue to insist that the phone call was the only option for the intake?

Why did they have pens and pads for their own benefit at the meeting, but not for mine? They knew beforehand I was deaf. Even worse, when my partner asked if we could have a pen and paper, she said he could hear so it wasn’t necessary! Why didn’t they write anything down for me? Why didn’t she ask me the questions she wanted to ask me on the phone?

Why did the female staff member in charge of the meeting focus on my partner from the very beginning with eye contact and communication? For your information, even though I may be deaf and was having trouble lipreading her, it was still incredibly rude to make as if I wasn’t there. Deaf people still expect all these unspoken social rules of communication and politeness to be afforded to them also!

Why did it seem they expected my partner to do the interpreting for me? Why did she  continue to talk to him when he made it clear he was unable to interpret for me? What was the point of this meeting? It seemed to me this was more about keeping up the appearances of doing her job than it was about helping us.

As the meeting was finishing up, my partner asked if ALL the information discussed at the meeting would be going in an email to me. He was assured that yes, I would be informed and also a list of supports and services would be included in the email. He was also told he would be getting a list of services he could access himself separately, emailed to him also.

There are some important things you need to know for next time. Perhaps not the next time with me as I don’t want to repeat this, but definitely with anyone else who is deaf that walks in your door.

1. The pen and paper is more important for communication with the deaf person than it is for your notes.
2. Look at the deaf person, and speak to them directly.
3. If the deaf person cannot meet you on your hearing terms, then bloody write!
4. If writing isn’t working, perhaps reschedule the meeting – with an interpreter!
5. Do not, absolutely do not, use the deaf person’s friend/family/partner like you used mine unless they are there for the purpose of interpreting, and have communicated they can interpret. Even if they can interpret, look at, and talk to the deaf person!
6. Phone intake is an exercise in futility if the client is deaf. Put alternative options for that communication in place – like email intake, relay service intake, sms text intake.
7. P.S. Putting it all together in an email in the first place would have been a much better choice than having us all suffer through a meeting like that.

It is ironic your services are all about connecting people to services and helping support their mental health given your conduct left my partner agitated, stressed and in poor mental health. Thanks for that. Thanks for wasting our time. Thanks for making it so that I couldn’t just ignore this incompetence and taking up more of my time in writing this.

I walked out of your workplace, feeling livid. My partner was right next to me, feeling pretty terrible about his own abilities. He was apologising to me profusely for not being able to interpret and fill me in properly. It wasn’t his fault your staff members took advantage of his hearing because I was deaf. It was THEIR FAULT. That was not fair to me, nor him, nor my daughter. It was just easier for them to talk to him wasn’t it? Well I can tell you now it was not easier for him. He was stressed, and when he is stressed, he struggles with communication, interpreting, and retaining information. They may as well of sat there today without us in the room and chatted to a brick wall for all the good that meeting did for both of us.

So remember that email we were promised? It looks like you delegated this task to the new guy. My partner and I both got the exact same email. This is not what you said you would do.

You also promised to inform me of what was discussed during the meeting. This wasn’t in the email. You also promised to inform us both of possible services, programs, supports that were available in the Cairns and Tablelands area and this is what we got:

A link to Australian autism organisations off the Autism QLD page. We already told you we knew abou AQ and there was not a great deal of useful services locally from them given they mostly were focused on supports for school integration.

A link to a news article about why parents of children with autism are choosing to homeschool. I am not sure why was included. We are already homeschoolers, and we are aware of the news.

A link to a google search for ehealth qld. Oookay. We know how to google too you know?

A link to My Health Record. Really? We made sure we opted OUT of this a long time ago due to privacy and the Australian Government’s inability to secure highly confidential electronic data.

A link to the National Library of Australia. Um… Thank you I guess? We were already members to the local library as well as the NLA.

Also, there was a contact address, phone number and email for Carers QLD.

What do we think of this information? Umm it was questionable. If your staff get paid to do this for a job, I can do a much better job even with my communication barrier! Come on now! That was totally inadequate, had nothing at all (excepting Carers QLD) to do with local services and programs, or with providing information regarding what was discussed in the meeting. If the meeting was really THAT pointless, why waste our time, why even bother calling us in the first place??

My son is out of his ATAPS sessions now and we need to take him to the GP shortly for a referral to the new STEPS so he can continue to see his psychologist. This is happening on 27/02/2019. I am NOT going through this rigmarole again and I am NOT going to tolerate delays of months in you ticking your boxes and approving access to his therapist. Get your shit together please. I have also attached list of local services that may of benefited someone in the position we were in because frankly it looks like you could do with some help in obtaining that information.

Yours rather irritatedly,

–  deaf in society.