I have recently visited a number of learning disability services and one of the things which really struck me was how dependent some parents and carers become on those they cared for - both financially and in terms of company. It is a controversial thing to say but disability benefits are, quite rightly, higher than those for job seekers. While this is right and proper in some cases only a small proportion of this money is actually getting to the people with learning difficulties themselves, instead being sliced off by their family. When the person with learning difficulties reaches adulthood and is ready to live more independently outside the family home this can lead to real problems between what the families want and what is best for the person involved. Do other people have experience of this at all?

Parents and carers are in a really difficult position - they have often invested so much of their lives in supporting a person is must be hard to stand back and think about what would be best for the young person.

Yes- they probably feel they are doing the right thing for the young person although their judgement may have been clouded. Best intentions were probably meant.

Joe,

It's even worse when the parent is a SW and tries to balance the needs of his daughter whilst recognising the constraints of the social worker and knowing (in the back of his mind) that he could provide a better service than the social worker is.

Regards

I have come across this before, not only regarding finances which are often pooled with the household income but also with other issues such as respite care and day care.

The majority of carers have the individuals needs at heart but some require encouragement to let go.                                                                                           I

Its really not surprising when you consider how little help they actually get and the fact that even this is relatively new.

Many were left to shoulder their burden alone in recent history and people with intellectual/learning disabilities are in some ways still seen as " eternal children"

The answer I think is to increase the carers allowance and to reward them for the invaluable work they do.

 Yes, it's shocking how little support some of them seem to receive, especially as many of us will become carers at some point. 

As a parent carer of an 11 year old with a learning disability. I was interested to see the comment posted. I do think Aimes makes a valid point. However you have to acknowledge that most of the time at least one member of the family has had to give up their career to care for the child. A lot of my friends have had to give up their career to care for their disabled child and they do use the disability benefit to help the family survive financially. I feel that as a parent of a disabled child that I am expected to take a vow of poverty as well as martyrdom Maybe as the young person starts college then the parents could also be offered courses to help get them back into work.

Hi Elektra and others,

I was fortunate in that I was able to continue to work while my wife stayed at home and yes, the vow of poverty rings true to a certain degree. How anybody thinks that ICA (and thanks to Jackie Drane for that) equates to a salary is beyond me.

Another issue concerns health. I have lost count the number of 'stay at home' parents who have developed illnesses (some quite serious) which apparently dont relate to the disability of the child. Does anyone know of any research about this?

Elektra - Dont forget to take time for yourself - red wine is good as are friends who will listen and sometimes, have a really good laugh.

 Regards

Shocking indeed!