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.
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