Friday, 24 July 2009

24 hours a day, 7 days a week

Someone I once met briefly at a consultation on disability services has been charged with murdering her son. He was in his teens, had the intellectual capacity of a two year old and was violent. I do not know whether the defence team will go for self-defence or temporary mental incapacity. Either way it would be wrong to see this woman incarcerated. She loved her son. Her mental anguish and despair is something I cannot begin to comprehend.
Her family will love and support her. They always have. They loved the child. In the end it was just too much. She had to be the primary carer - all day, every day. Her husband had to go to work to support the family.
There are far too many families in that position. They live in policy prisons, prisons made by government policy. This is a government policy which says, people with disabilities have a right to live in the community. It sounds good. Few would disagree with it. The problem is that the government's notion of how to approach this right is to say, "Your family will look after you." That is the end of the story for the government. It is a cost saving measure for them.
They are supported in this by the articulate minority of people with disabilities who are able to live in the community. They can fight for their own needs and services. Many of them hold down responsible jobs. They passionately believe in the right of everyone to 'live in the community'. When others point out that it is not possible for their child and that, as a result, an entire family is isolated from the rest of the community the articulate minority say, "It is just a matter of more support services, of more respite care. You have to fight for it."
The reality is that it is not just a matter of more support services, or more respite care. These families do not have the energy for the fight. It requires resources, organisation, time, powerful lobbying, media interest. They do no have resources. The organisations which are supposed to speak on their behalf keep to government policy for fear of losing the little funding they get. The families do not have the time or energy to lobby - and nobody will listen anyway because this is not a cute, good looking little kid with a visible disability who will make a good human interest story on the media.
So we go on having families where everything that can be locked away or bolted down will be locked away or bolted down. The crockery and cutlery will be plastic. The other children learn it is not possible to bring friends home. They can never have a birthday party - and so do not get invited to the parties of other children. Their parents sleep in shifts so that someone is always alert for trouble. They never attend school events as a family. They never visit - even relatives - as a family. They are never visited. Money is always short. Everyone is constantly on edge waiting for the next explosion of frustration and anger from the child who does not understand the world around them.
It's a good policy. It saves the government money. It provides for the rights of the individual with the disability. It ignores the rights of the other members of the family. That is all right isn't it? They can look after themselves - or can they?


Virtual Quilter said...

Of course everyone has the right to live outrside intstitutions.
But they also have the right to be supported by people with the qualifications to care for them so they can live independently.
But if they need 24/7 care the carers must have time out, even if they are family members, and institutions may be the only answer.
Carers also have the right to live a close to normal life, something which never gets consideration in discussions about the rights of the person with special needs.

Anonymous said...

I don't think there can be any disagreement that people with disabilities should have the right to live in the community. The question is: which community? There is certainly support from both anecdote and commonsense that, for the intellectually-impaired, a well-run institution can provide a more stable and secure community than their family or the outside world. And the benefit to their family of having the person cared for by trained professionals must surely help them enormously in maintaining a loving relationship.

'Care in the Community' is too often a bureaucratic euphemism for 'Let us divest ourselves of this onerous responsibility, and dump it onto people who have neither the training nor the experience to cope with it'. By which I mean both the family who have to deal with a situation they cannot handle, and the mentally disabled person who also has to deal with a situation he cannot handle. A grown man with a mental age of two needs the simple security of three meals a day, clean clothes, fixed bedtime and a regular bath. It is a travesty of the notion of 'care' to expect him to cope with a world that even highly-educated professionals often struggle with.

It is a government's job to care for those who cannot care for themselves. In a civilised society that is its raison d'etre. Most other things it should keep its nose out of.

Cost? I would rather my taxes were spent on good institutions that care for the needy than bombs, bullets and bureaucrats. Or the cleaning of moats surrounding politicians' second-home castles! Or obscene handouts to incompetent industry bosses when they get the boot. Etc ...