The joy of personalisation - Village Magazine

July 2016 4 1

n army of of taskforces is contem-

plated in the current Programme for

Government, covering everything

from electric cars to broadband roll-

out to mental health of young

people. There is one among them that holds

particular promise for people with disabilities.

This is the taskforce promised on the implemen-

tation of “Personalised Budgets” for people

with disabilities.

There is a commitment in the Programme for

Government to “devolve budgets to the person

so they may shop beyond traditional service

providers to better ﬁt their needs”. The task-

force is to draw up an application system,

brokerage models to assist people to connect

with and purchase the services that meet their

needs, systems of accountability, and practices

to monitor the Personalised Budgets.

This is a crucial development for people with

disabilities. The taskforce is to be set up within

three months of publication of the Programme

for Government in May this year. It is to be led

by public-service ofﬁcials and to consult with

civil society. After a period of ﬁve years, it could

change into a national agency. One key concern

is that people with a day-to-day experience of

disability must be among the taskforce

membership.

Personalised Budgets are not a new idea.

They can be traced back to the Independent

Living Movement in the USA in the 1970s. They

have been in operation in England for almost 20

years. They go by many different names such

as ‘individualised funding’, ‘direct payments’

or ‘service brokerage’. All of these refer to dif-

ferent systems, but the key characteristic in all

of them is the element of choice.

It can be disquieting for those of us who

receive, or will receive, a social care-service to

know that, unless we have the means for private

support, we have little choice over what ser-

vices will be provided. For many people with

disabilities this lack of choice is a lived ongoing

experience. Personalised Budgets afford choice

to people with disabilities about where, when,

and how their needs are met.

Personalised Budgets should be ﬂexible to

reﬂect a person’s changing needs over time.

They must acknowledge that a one-size-ﬁts-all

approach does not work. In some countries the

Personalised Budget changes in certain circum-

stances such as upon reaching a certain age or

moving from community living to nursing or res-

idential care.

The idea that a person should control his or

her budget and therefore the services received

is based on a social model of disability. This

understands disability as being caused by the

way society is organised and emphasises the

need to remove barriers that restrict the life

choices of people with disabilities. It departs

from the charity model that pervades Irish dis-

ability services. Such choice should be a

straightforward principle, but in practice pro-

gress on choice for people with disabilities has

been slow in Ireland.

A central problem is that nobody is actually

entitled to a service to begin with. Therefore

nobody is entitled to a Personalised Budget.

While there is an entitlement to secondary edu-

cation to age 18, there is no entitlement to any

service following that. The Disability Act which

was enacted in 2005 is not ‘rights-based’. This

means that a person is entitled to an assess-

ment of their need but has no corresponding

entitlement to a service, therapy or support to

address that need. You simply take what you

are given and, at present, only children are cov-

ered for the assessment.

Issues of cost have been raised as a barrier

to introducing Personalised Budgets. However,

in many jurisdictions - British Columbia for

example, it has been has shown that Direct Pay-

ments cost the same as traditional services

and, even where costs were initially higher, they

evened out over time. An issue of legal, or more

usually ‘mental’, capacity among people with

intellectual disability in particular has also

been cited as a barrier. However, the Assisted

Decision-Making (Capacity) Act will alleviate

many of these concerns about capacity once it

is commenced. Its implementation will ensure

people can get appropriate decision-making

support.

Research has shown the positive impact of

such support on the physical and mental well-

being of people with Personalised Budgets and

how they feel more in control. This suggests fur-

ther value for money. A 2012 Value for Money

Report for the Department of Health, which

looked at disability services, recommended a

move away from block grants and towards dis-

aggregation of services. This would facilitate a

Personalised Budgets approach but has yet to

happen.

The taskforce is to be established to imple-

ment Personalised Budgets. The use of the

word “implement” is critical in signifying action

and delivery. We cannot be satisﬁed with fur-

ther reports, scoping exercises or pilot projects.

The task of the taskforce is to put Personalised

Budgets into effect.

Sarah Lennon is Training and Development

Ofﬁcer with Inclusion Ireland

The joy of

personalisation

Government must implement commitment

to move away from imposing standard

solutions on people with disabilities

by Sarah Lennon

The taskforce is to be

set up imminently now.

After a period of ﬁve

years, it could change

into a national agency.

People with a disability

must be on it.

Moments of joy: all too rare in disabilties sector