More New Zealanders who have extra needs are choosing their own support staff to help them live independently at home. Rhett Brown, regular Family Care columnist and motivational speaker, shares his experiences about hiring and training support workers, and offers tips about how to use their services effectively.
Many of us rely on support workers, and I'd like to share some thoughts about how to use their services effectively. My situation happened in an instant, going from complete independence to one of complete dependency. For others their support needs increase over time, and yet others are born needing support.
For all of us who need this help, support workers can be all that stands between living in the community, or living in an institution that can provide 24/7 support. As I was thrust so quickly into my support situation (I broke my neck in a workplace accident), I really struggled with being unable to dress myself, turn in bed, shower, make my own meals, drive a car, or do the millions of other big and little things we take for granted each day.
I had to adapt to my lot and accept it, or go back to the rest home where I first lived after being discharged from the Otara Spinal Unit. No thanks!
At first it was so hard to ask someone to do things for me on a constant basis throughout the day.
Early on, while still at Otara, I decided to register with a respected care agency which supports many ACC clients and people with disabilities who have significant support needs like mine. The agency screens support worker applicants; I conduct the final interviews for shortlisted candidates myself and decide who to hire.
I did have the option of a funding package so I could organise my own support needs, but that would mean issuing the wages, doing the tax, and sorting out holiday pay and other jobs best left to bean counters. This was not for me. I was far too busy being a tetraplegic! I partner with a provider to coordinate support, and I manage my own team day to day.
Over time, by trial and error, you learn what type of person suits your needs, not just in terms of providing practical help, but the personal traits needed to get along. I will state, unashamedly and in a non-sexist way, that I prefer a female support team. Others may prefer men.
In my early days I chose workers mostly by their past work experience. That seemed logical. And certainly I ended up with workers who knew what they were doing – their way. Not mine.
I have the right to expect my supports to be carried out as I wish. For instance, some of my first workers seemed to think I should shower in the morning because they had always done it that way. However, in my life I always showered in the late afternoon, before tea. When I wanted this to happen, it created problems, as they imagined late afternoon was when tea should be prepared. But both jobs can be done one after the other.
In my case, I spend up to 16 hours with a worker in my home. On occasion there were personality clashes; this could be a tense, unpleasant time, so staff came and went.
When this happened, I would be direct and explain that as our working relationship was becoming a strain for both of us, I would be asking their supervisor to replace them. I would make it clear that I wasn't questioning their skills, and that they might have a different experience with other clients.
When interviewing, I would choose someone I felt comfortable with, who maybe had similar interests, and who seemed to have a happy disposition. I care less these days about work history. Training staff is the responsibility of the agency. So that is where, if you're not going to manage every detail of your funding, you need to work with a good, solid care agency that has a proven track record in staff training.
I found the support workers picked up the job very quickly, and were enthusiastic, very caring, loyal people. Being fresh to the industry, they were not burnt out from years of caring for other clients. They had no preconceived ideas about how to do the job, and were taught the correct methods from day one. This meant my team worked in a manner which suited me and my lifestyle.
As a result, I ended up with four great carers who work my 24/7 roster. The average stay has been a bit over three years. When someone has moved on, we have always parted on very good terms.
I have observed teenaged disabled people hiring carers of their own who are often of a similar age. This doesn't always work well, as there is a tendency for both to sit round, be best mates, and text and Facebook all day, leaving routines and vital jobs unfinished. These younger ones are sometimes better off with a more mature member or two in their team.
Family members can make good carers provided both parties are happy with each other and can openly discuss what support is required. What happens if family accept payment but don't provide the expected level of care? Also, the continuous obligation to be available often gets in the way of the family carer's private life. It's important to agree on boundaries and what will happen if things don't work out.
Helping each other
Look after your team. Use your manners, with those two magical words ‘please’ and ‘thank you’. And when you use them, mean them. Be sincere. Treat your carers as you would want to be treated.
Provide a clean, pleasant working environment. Mine have their own room in the house with a full bed for when they sleep over. They watch TV with me in my lounge. I allow personal phone calls, especially to the ones with family. Often we go out for coffee or lunch in town, as an extra show of gratitude for what they do.
You may be thinking, "well of course you do these things, we all naturally look after our workers this way".
I know of far too many disabled people who treat their carers abominably. These are the very people there to help you because that is what they want to do. Some support workers are never allowed to sit and read during a quiet time. Some must stay in their room while not attending to duties. Some have lists a hundred items long with extra things to do when everything else is done. Some are watched over by the partner or relatives of the disabled person.
Some sleep over on a sofa in the lounge. Some are sworn at. Some work in environments where drugs are openly used and pornographic TV is the norm.
Yes, all this is true.
No wonder good staff get disillusioned about working in this sector.
Like everything concerning living with a disability, it is how you cope with it which determines your quality of life. Living with support staff is the same. How you choose to accept that inevitability, weave it into your life, and be happy with what help they give, will determine how contented you are.
Just think that they are doing for you what you cannot do for yourself. And remember this. Tasks may not be done when you want them to be, like now. Things may not be done as you would have done them. Really, this doesn't matter. Focus on the fact that your jobs are getting done, and that without support they would not be attended to.
Be happy, be kind, and surround yourself with people who can help you achieve the very best quality of life, and the confidence to face each new day.
- Confidentiality is a massive issue. It goes without saying that you must make your team aware that what they see, hear, and do in your home stays there. With carers in close proximity all the time, they are bound to observe some aspects of your private life. So be careful.
- I prefer workers who don't smoke, as I'm a nonsmoker.
- I won't hire anyone who raves on about how good they are, who is unkempt, who doesn't communicate well, who won't look me in the eye, who has unreliable transport or childcare, or who seems to have family problems.
- I admit that I prefer women support workers because they are nurturing and put me at ease.
- Those of us who need support workers have to trust our instincts when hiring someone to undertake this intimate work. It's important to feel comfortable with those who are in our homes, among our possessions, sharing our lives and crises for (in my case) many hours at a time. We all have to have the ability to turn a long shift into a comfortable, fun time, while maintaining professional boundaries. I find that easy, which is why most of my team have been with me for a long time. I am very blessed.
Manawanui is New Zealand's leading facilitator of Individualised Funding. Learn more about how Individualised Funding works in New Zealand on the Manawanui website.