Give your views on the ILF

I for one, as a parent who manages the ILF on behalf of my severely learning disabled daughter who is highly dependent on able people to live her life, am horrified at the thought of ILF funds going to our local authority as I do not trust them.

There are also several families in my locality who are not only managing ILF funds, but are also Independent Living Trustees, as I am. We are all employing, on behalf of our severely learning disabled sons and daughters, small individual teams of personal assisitants 24/7 so our disabled family members can live an ordinary life in their own homes, well supported through a combination of Direct Payments and ILF.

Yes, I see the need to cut bureacracy but I would rather the funds for all learning disabled people or all disabled people come to that, be in the hands of the ILF. As so far our experiences as families locally, over the years have been that the reviews from ILF visiting case workers have been much more positive, respectful and helpful. They also seem admiring of the task we take on in enabling our sons and daughters to have an independent life in their community regardless of the support and assistance they need, which is refreshing change. Between us as individual families we've rarely experienced such positivity coming from local authority social workers over the years, whether qualified or not, I'm sad to say. Yet they are supposed to be our servants.

The feedback I get from parents, as well as from my own personal experience, is that more often than not the quality of the reviews and attitudes from some social workers is generally poor with some treating us parents/Trustees with disdain, judging by some of the silly comments/suggestions they make about our sons and daughters lives, they know nothing about, are at best unhelpful and at worst unlawful. It's as if our sons and daughters must not have a life.

They seem no to take on board that none of us parents set out to be employers when our sons and daughters were diagnosed at birth or in early childhood, but our mixed experiences of local authority services over the years have either been non-existant, downright disgraceful or in congregate settings where many of us would not choose to leave our pets let alone our much loved disabled sons and daughters.

As our disabled adult children grow older and their needs have not lessened or have even increased with their age or further impairment, some social workers seem to be still scrating around trying to find ways to make cuts to budgets we carefully manage and which we as parents fought long and hard for some years ago. Yet, they seem uninterested to hear that the Direct Payment rate in our county has been frozen for three years, the equvalent of a cut, yet our costs as employers has risen.

Perhaps this negative experience of the local authority is just in my area but truly feels as if some social workers begrudge us succeeding where they have failed and do not like us having some power and control in enabling our disabled sons and daughters to flourish.

It is bad enough knowing that the Learning Disability Health Reform Grant now in the hands of local authorities has not been ringfenced for people with learning disabilities. Are the DWP going to ensure that the ILF funds will be ring-fenced for those individuals who are still in receipt of it come 2015 once it goes over to local authorities? I suspect not.

If I sound cross, frustrated and down right fed up with all the present government reforms in disability funding deeply affecting vulnerable disabled peoples lives and their families........... I am.

Anon in East Anglia