Taking Control – A report on the Individualised Funding Project

From: NPSA - (National Parents & Siblings Alliance)
You will remember that over the past eighteen months we have looked at alternative service/support options for our family member with a disability. In our Information Sheet of Dec 2007, we talked about the ideas behind Individualised Planning for people with disabilities. Following our conference last October the organising committee has been meeting regularly to try to move the project forward. While no final decisions have been made we expect to have a plan shortly. Some of the areas that need to be looked at are discussed below.

If individualised funding is to happen it will be necessary for the Government/HSE to find new ways for the distribution of support funding for people with disabilities. We believe, initially, the current system of Consultative and Development Committees might be retained. However, there would need to be huge changes in how they decide who gets the money. The situation for people moving into services for the first time would be quite different to those who are already with a service provider. This would need to be worked at.

The other component is how to create a "good life" for people with a disability. This will involve a new kind of thinking for all stakeholders. Essentially, it means that the person becomes the centre of all decisions made for or about him/her. Many services are inclined to say that this happens already and in a sense it does. However, we are talking about a huge shift in thinking as compared with the present. This shift would involve not only service providers but also parents and other carers. Most of us are trapped in a culture which says that we know what the person with a disability requires and that anyway, he/she would be quite incapable of having a view - even with assistance. (Although we certainly know that our sons or daughters have, at times, a clear view of what they don’t want and make that clear in many different ways.) So, in deciding what our family member with a disability actually wishes, the "discussion" must be a three-way one between family, service provider and our son/daughter. We understand that this might be seen as very difficult and at times it will be. However, that is the inevitable and necessary result in putting the person with the disability at the centre of the process.

Of course, decisions will then have to be made. What will these decisions look like? The nature of the process dictates that we cannot say what they will look like. The final decision could be a traditional service – if that is what really suits the person. It could be drastically different from that or could be somewhere in between. International experience is that where individualised funding/planning exists the majority still go the traditional road. There is only one criterion - we should be absolutely sure before deciding with/for our son or daughter that it is the best way for him/her to achieve a "good life".

In short, we are saying that families should be open to all possibilities and service providers should start making the service/supports fit the person rather than making the person fit the service.

It goes without saying that to achieve all this it will be necessary for those providing the funding to be open to the concept of individual/family control over how funding is used. This will require a major shift in attitude by the DoHC and the HSE.