‘Direct payments is a generic term used to describe the provision of funds by the State, directly to people with disabilities, for the purpose of purchasing a range of supports and service’ (Egan 2010, p 6). Direct payments may be used to pay for all forms of support such as therapy, equipment, the purchasing of support services and the employment of personal assistants.
The direct payment system represents a fundamental shift from the service user model. In general, the approach involves the person with a disability becoming the employer of one or more personal assistants (PAs) whose jobs may include supporting the person to mobilise, wash, dress and look after his or her personal needs. Additionally the PA may carry out domestic tasks such as washing, cleaning etc. The PA may also support the person with a disability to socialise, go on holidays, engage in whatever leisure activities they choose and, of course, to work or attend educational courses.
However, a different approach is also possible where a direct payment is used to buy a service from a service provider or, indeed, from services (such as residential support, therapeutic intervention etc) provided by multiple services.
A direct-payment system has operated successfully in Sweden since 1994 (Egan 2008) and in the UK over the past few years. In Northern Ireland the number of people availing of direct payments has risen from 797 in 2007, to 1890 in 2009 (Egan 2010). Of these, 22% are people with intellectual disability (Cunningham and Mallon 2009). Except for a few individuals with physical disability, direct payments do not operate in the Republic of Ireland at this time. However, John Moloney, Minister of State for Equality, Disability and Mental Health has recently indicated that he is drawing up plans to bring in a system that would enable people with disabilities to purchase their own supports as they choose.
The question arises as to how people with intellectual disabilities may be facilitated to access a direct payment system and to use it in a way that actually promotes their autonomy and enables them to achieve a better life than they have at present. Various models exist that the person with a disability may choose. Some require the person to act as an employer—responsible for interviewing, hiring and training the PA, as well as dealing with all the employment issues and ensuring that their employment system is in line with relevant legislation. This somewhat onerous model may not be for everyone, but models also exist where the person may contract with a company to obtain their personal assistants, or may join with others to form a cooperative that deals with the employment issues collectively. Lastly, a support model comprising a circle of friends or a microboard can be used to facilitate the purchase of services, employment of PAs and to ensure that the person with a disability’s funds are spent as he or she wishes. This is perhaps the type of approach that may suit many people with intellectual disability.
Strengths of the direct payments approach
The great advantage of a direct payment model is that the service user gets to choose exactly what he wants. The paternalistic approach of some service providers ceases because the person has the money—and therefore the power to choose. The individual’s autonomy and control are greatly enhanced. Other advantages that have been observed are that the self-respect and dignity of the person with a disability are enhanced and that employment opportunities are increased (Egan 2010).
Weaknesses of the direct payments approach
There are some disadvantages of direct payments for people with intellectual and other disabilities. The first is the question of consent, that is, how can the framework of supports for the individual be designed and operate in such a way that the choices of the individual are always centre stage? Secondly, how can financial probity be ensured in what may at times seem to be rather ad hoc supervisory arrangements. Furthermore, dealing with the complexities of employing and training PAs and ensuring that employment legislation is adhered to may be daunting for the person with a disability, and/or for his or her circle of support.
One further potential weakness of the direct payments system is that it may be cheaper to employ untrained or poorly trained personal assistants than qualified professionals to support people with intellectual disability. This option, which in a time of recession would obviously appeal to the government, could have the effect of reducing the level of expert care and support that those with multiple and complex needs require.
Direct payments present a very different model of support in the Irish intellectual disability sector. However, much experience has been gathered of this approach in other European countries, as well as in Northern Ireland. It should be eminently possible to design a system carefully which can facilitate people with intellectual disability and those (their families and their friends) who support them to avail of direct payments and in the process to achieve a better, more satisfying and more autonomous life for each person with an intellectual disability. The challenge is to the Minister and the government to achieve this in the face of the current economic downturn.