Monday, August 16, 2010

At home is not always best

Someone I know works in 'the field'. The field of disabilities that is. One of his clients has very caring parents. The parents do all they can for their son. The son has quite challenging behaviours and needs high care.

My friend is a professional and cares for the lad on a day to day basis within office hours in a government funded care building, his parents care for him the rest of the time. It sounds like an ideal situation for the lad hey? Well, not really. What happens when his parents die? This is a huge problem that many parents of disabled children are facing as they and their children age.

I am talking about people who are unable to function on their own who are supported by their parents at home and government funded daycare. My friend thinks that although what these parents do for their son is very admirable, they could do better by getting them into a situation at a earlyish age where professionals do the hard yards. It is just going to be such a terrible shock to the disabled person when, not if, their parents die. He needs to feel cared for and feel secure. He does now, but will not in the future. He should be eased into more sustainable public care now before it is too late.


  1. You don't mention siblings? I would guess those wonderful parents' lives have been completely consumed by their child, and 'easing him into' the care of others, would leave them with a vacuum they might be too old now, to fill.
    You and your friend are correct of course, 'ease' being the key. Give the child a small shock instead of two big traumas - relocation, and parental loss - simultaneously.
    Of course these admirable parents will not decease simultaneously, and the work of his care would be beyond the remaining one.
    It's a terrible thing, and needs to be thought about by those Botherers who try preventing early, preventative f*etus-scans.
    (why the asterisk? because Botherers have Guggle Alerts for key words, and would come pounding in here to argue. I'm not stupid.)
    Bless the self-sacrificing parents though.

  2. I know a lot of people in this situation. There is a group formed trying to get changes through...the program is called the National Disability Insurance Scheme NDIS and was nbegun by the lady who edited my book. Their aims are to cover just this area and also the needs of all diabled people not covered by workers comp or thrid party -
    Its for too many 24hours a day by seven days a week for decades will only small respite that you have to crawl for -this scheme begun by relatives in this situation should help if it gets through.

  3. My brother is mentally handicapped and lives with 5 others, in different mentally stages in a home. He loves his home life, he loves to come back home to parents or siblings, but he feels most at home in his own place. Of course the health care system in the Netherlands is different from Australia, a tiny country vs a continent, but there's care, they have to work for part of their upkeep. When they are home a guidance counselor is there too.

    He misses his friends when he's home for a long time and just wants to go back.

    Preparation on the [possible] death of a family member was done by those guidance-counselors, we brought him home, where together with the rest of his siblings we said good bye to our mother. Of course it was hearthbreaking to see his reaction, but the strenght was in numbers. I can say we're lucky, that even when we don't live close to each other, when you need a helping hand or a shoulder to cry on, one or all of us will step forward and give that support.

    BTW, my Mum is still alive and doing well, so is my Dad.

  4. Neighbours had a daughter they molly coddled to the point where she couldn't even go shopping on her own, then she had to learn damn fast when both parents ended up in hosp.
    Institutionalised but in a different way.
    Having said that, though, some places 'caring' for the disabled I wouldn't even place a dead dog in.

  5. Siblings often don't want to take on the care of their brother and sister Ann. Right or wrong. Good input, thanks. I am happy for the botherers to try to win an unwinnable argument.

    MC, is this the scheme that is a copy of the NZ scheme? I was quite impressed when I heard about it.

    Very interesting Peter and thanks for your comment, although I am a little confused by your mother being alive and yet you all said goodbye to her?

    Jayne, from my experience, places are pretty good now. While Kew Cottages was hardly ideal by today's standards, many were very comfortable living there.

  6. Let me explain, my Mum was very sick and was dieing, she didn't want to go to the hospital so we said our farewell to her, telling her it was okay to go if she wanted.

    Two weeks later she was back to her old self, making preparations for her own 90th birthday, which is now 2 months ago. My brother knows now it can be over within... pffff, and even when he hasn't seen her in a few weeks, he has said his goodbyes to her.

  7. Thanks Peter. I understand now. May your mother live on and be well.

  8. I was meaning a couple of nursing homes that have young disabled people as residents, for wont of a better placement for them.
    Kew Cottages wasn't too bad, it was just built on such expensive land....

  9. It is crap Jayne. I have heard so many ministers say they are fixing it, but none have.