I’ve been happily married for three and a half decades. So it’s a long time since I sat by the phone waiting for that special call. But trying to get community help for my adult daughter with a chronic illness has taken me back to that world faster than any Tardis.
I know that budgets are tight, it’s the end of the financial year, and the industry is under reform. But if I – a university graduate who has worked in the system, with English as a first language – am finding it impossible to negotiate, what hope is there for those who are less proficient in English and the ways of Government Departments?
I made the first approach about 2 months ago. A very helpful young woman in an umbrella organisation – let’s call it service A – gave me some ideas, and promised a follow up email. Which failed to eventuate. But I left several messages on phone numbers that she had suggested.
We did get through to service B. Trying to promote her independence, I had suggested my daughter make the call. Telephones are difficult for her because of problems with concentration, as well as the energy needed to hold the phone. After being on hold for some time, she answered a long list of questions, only to be told their books are closed. So why ask the questions? (Service C later told me they always do this, but they do occasionally have places at the beginning of the month.)
Some days later service D returned my call. They don’t offer community services directly, but are a secondary referral point. But another very helpful person gave me another list of phone numbers. More messages left.
Service E was a winner. About a month after I made the initial approach, and several phone calls later, someone came to do an assessment. She had lots of suggestions (more phone calls to make), but also was able to give us some practical help. She has made a referral to Service F (still waiting for them) and referred us to person B in her organisation. And person B is yet to call us.
Meanwhile service G returned my call. I was in the city, with poor telephone reception. So after a bit of telephone tag, with me writing phone numbers on my hand (I had a pen but no paper), we made contact. Yes, they could provide personal care. But someone else would call to make a time for the assessment. Guess what – I am still waiting. But I have left another message. (After choosing the option to stay on the line three times, I was transferred to someone’s message bank anyway).
This week person A – the only person who has offered practical help and who only works one day a week – rang to report progress. She is about to go on leave for six weeks. But she has given my details to person D, and they will be in touch.
The other helpful person – person E at service H – spent a long time talking to me, said that they’d be able to help, but she was too busy to do a formal intake. She also suggested that Tuesday and Wednesday were the best days for ringing. Of course, the long weekend changed that.
By now I was experiencing tension headaches so I went to see my doctor. Who spent 50 minutes offering (mainly useless) suggestions for my daughter’s condition – which she admits to knowing nothing about. She did suggest residential respite care while we are away next month. And that I’d better get my liver function checked in case I was overdosing myself with the therapeutic wine bottle.
I discussed the possibility of residential care with my daughter, and she agreed. So I rang person E who was the best person to help with this. Oh no, she said.That’s not an option. The only place that would take her would be a mental health facility. Not appropriate at all. But we did start the intake process. She didn’t seem as friendly and helpful as the first time I spoke to her. I thought it was because I’d rung on a Thursday. But soon she confessed that she had had a birthday recently, and she suspected that she would be called away for cake. True enough. She had to eat cake. And the promised returned phone call to complete the intake hasn’t eventuated.
So after about eight weeks, nine organisations (service I is yet another possibility), countless phone calls, hours and days waiting and hoping for people to ring me, we are no further advanced. We have promises but nothing concrete.
I am about to take matters in my own hand. Nice me is gone. I will be making harassing phone calls every day. If I can get through to a person. Waiting for those teenage boys to ring was nothing compared to this.