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The joy of personalisation

Government must implement commitment to move away from imposing standard solutions on people with disabilities

An army of of taskforces is contemplated in the current Programme for Government, covering everything from electric cars to broadband rollout 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 implementation 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 taskforce 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 different 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 services 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 circumstances such as upon reaching a certain age or moving from community living to nursing or residential care.

Moments of joy: all too rare in disabilities section
Moments of joy: all too rare in disabilities section

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 disability services. Such choice should be a straightforward principle, but in practice progress 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 education 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 assessment 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 covered 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 Payments 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 wellbeing of people with Personalised Budgets and how they feel more in control. This suggests further 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 disaggregation of services. This would facilitate a Personalised Budgets approach but has yet to happen.

The taskforce is to be established to implement Personalised Budgets. The use of the word “implement” is critical in signifying action and delivery. We cannot be satisfied with further 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