I know what I want – Personal budgeting in disability services in Finland

Summary

Between 2010 and 2013, two non-governmental associations, the Finnish Association of Intellectual and Developmental Disabilities and the Service Foundation for People with Intellectual Disabilities, ran an experiment in personal budgeting in the Finnish disability services. The project was run successfully in two municipal districts with 15 to 20 people with intellectual and/or physical disabilities and 30 to 40 members of staff in disability services.

The focus of the project has been to increase the possibilities of self-determination for people with disabilities in the Finnish benefits system. The project was built on the principles of independent living and a person’s control of their own life.

Background

In Finland, social services are run under the principle of providing equal treatment to all people involved. However, the system was built in such a way to make possible the creation of imbalance in power relations and even tensions between social services and service users.

Finland applies public tendering to provision of all social and health services, including services for persons with disabilities. In the tendering processes service organisers (buyers of services) are communicating with service providers (sellers of services) directly. This often results in that voices of people with disabilities (service users) remain unheard.

Service systems tend to narrow the choices for support for persons with disabilities down to traditional, somewhat rigid services which are group based and may inadvertently congregate people with disabilities together, and at the same time separate to the broader community (e.g. all the people with intellectual disabilities in one town going to the swimming pool at the same time). Often there are only limited support arrangements to choose from, with not enough really inclusive options. This underlines the point that person-centred planning, as a set of approaches designed to assist people with intellectual disabilities to plan their life and supports, is not enough, if subsequently there are no real choices or the limited options offered are always the same for everyone. Self-directed support is an approach to care, support or independent living that seeks to improve people’s choice and control over their support arrangements. It is a flexible system which does not necessarily require a specific legislative framework, but can be applied within an existing legislative system.

‘I know what I want’ project introduced the model of self-directed support, in which the person with disability is at the centre of planning and organising services, and support is arranged as flexible as possible around the person, according to his or her real support needs and aspirations. The project aimed at to further empower people with disabilities in their independence.

Description

The project started in 2010 and was named ‘I know what I want’ to emphasise the ability of people with disabilities to decide for themselves how to spend their daily life, since they know their needs best. Two municipalities were chosen for the project to be run therein: a big town in the Southern Finland and a municipal district in Eastern Finland.

At the beginning of the project an expert panel was arranged to discuss the opportunities of personal budgeting in Finnish municipalities. The panel consisted of the representatives of the Ministry of Health and Social Affairs, Health and Well-being Fund, Association of Finnish Local and Regional Authorities, te Social Insurance Fund, municipal authorities, disabled people organisations (DPOs) and civil society.

The principle focus of the project was to increase the number and range of opportunities of self-direction for people with disabilities in the Finnish disability service system. The participants were offered training, consultation and peer group activities to support them during the process. The project also produced different materials about person-centred planning for young people and adults with intellectual disability.

The support to persons with disabilities was done through person-centred planning by asking the person concerned themselves about what they wanted in their life and what were the things that needed to be improved. The support needs were evaluated together with the person concerned and the local authorities with the use of the existing or methods that were developed through the project. Based on this evaluation, a draft personal budget was determined. If the person, for example, wanted to change their support for housing or what they do in the day, it was vital to know to what kind of services and funding this person is entitled to on the basis of the Finnish disability-related legislation.

The personal budget was created based on the needs of the person so identified, bearing in mind what they wanted to change and achieve with their support needs and ensuring that things that were already working well remained unaffected by any change.

In order to provide support, a support plan was made. The plan was made by the person concerned, with the assistance of their entourage and their social worker/case manager. The support plan clarifies, what kind of support arrangements are made, how they are made, and when and how people deal with possible risks. The support plans were then discussed and evaluated by public authorities, responsible for funding. Often, changes in the support or other arrangements were put in place. Sometimes this meant hiring a personal assistant or a support worker, changing the place of living from an institution to one’s own flat, learning new things or getting a job and getting the right support for it. The personal budget was only used to support activities laid out in the personal plan.

An exchange and evaluation by the person, his or her closest supporters and the public authorities was put in place, to make sure that the support is adequate. This created a process of positive change and good co-operation between persons with disabilities and local authorities.

Analysis

The project indicated that the lives of people with disabilities are controlled by institutional practices, regulations and power relations. The position of a person with disabilities was constructed in the official requirements to develop professional identities and maintain quality of disability services.

The results of the project on personal budgeting have been positive. The process of person-centered planning has improved the sense of well-being, since the service-users with disabilities have been able to think about improvements in their lives.

There has been clear empowerment of people with disabilities and their families during the process. The cost of support remained the same, but clearly with better outcomes. The local authorities have been very satisfied with the collaboration of social workers and persons with disabilities during the process. The local authorities learned to appreciate the voices of persons with disabilities themselves and appreciate their right to make their own choices.

Some of the participants have had an opportunity to undergo profound changes in their lives with the help of the process of personal budgeting. These positive experiences are useful for results concerning the impact of institutional power relations in the lives of people with disabilities indicate that the practice of personal service-planning does not necessarily improve opportunities for self-determination, if professional power remains profoundly influential.

Further reading

You can read more about the project at the project page of the Finnish Association on Intellectual and Developmental Disabilities (FAIDD), where you can find further links to publications describing the project. This practice was also described in Guide of promising practices on legal capacity and access to justice, which can be downloaded here.

2014 Inclusion Europe. Rue d'Arlon 55, 1040 Brussels, Belgium