Joys Huys, Belgium

Speech 29 November 2008, Workshop 3 - De-institutionalization – a life in freedom: Individual personal support networks

Biographical Notes

Education

• 1977 BSc Law (Catholic University of Leuven)
• 1981 MSc Social Law (Free University of Brussels)
• 1988 Dip Proficiency in English (University of Cambridge)

Work Experience

• 1977-78 Researcher at faculty of law, Catholic University of Leuven
• 1978-2001 Lawyer at Fund for Labour Accidents (Brussels)
• 2002-2003 Legal expert at the Cabinet of the Belgian secretary of state for the social security
• 2003-2008 Head of inspectorate of labour insurance companies.

Disability Experience

• Personal Experience: Muscular dystrophia
• Professional Experience: Labour accidents insurance
• Scientifical Experience: Scientific research at the Institute for Social Law of the Catholic University of Leuven (1988 - 2008); Lecturer of disability legislation to medical students (1990 - 2007)
• Volunteer work : Director of Independent Living Vlaanderen (1987- 2000)
• Self employed consultant of disability organisations, government bodies, etc.

Speech 29 November 2008, Workshop 3 - De-institutionalization – a life in freedom:
Individual personal support networks
Jos Huys, Affiliated Researcher, Institute for Social Law, Catholic University Leuven, Belgium

Let us focus for some time upon another interesting development: the growing success of circles of “personal future planning”, so-called “own experience planning” workshops, and other informal support groups which help people with disabilities to create a social network around them. Indeed, nobody can live in the community without relatives, colleagues and friends. A lot of people with disabilities, due to poor or segregated living conditions, only dispose of a very restricted number of people who support their personal life plan. A parent who dies, a spouse who leaves the house, or even the one good friend who leaves town, can result in a catastrophic scenario.

That’s why we have to create, on a structural basis, a group of people who are emotionally involved in our well-being. Several programs have been set up in the past three years, of which the one that is officially recognized as a pilot-project for three years by the Flemish Agency for people with disabilities alone had already 226 “plans” running in 2007 (1). This short comment will be limited to that program.

1. The network

The central figure of the network is the person with a disability. He or she decides who joins the support group, the time schedule of the meetings, the topics to be discussed. All participants at the network, whether they are family members or not, have a close relationship with the central person and share his or her personal aspirations. One of these voluntary members of this group takes the role of “central facilitator”. The network is supported by one professional coach from PLAN (2), a non-profit association. Together they all look how the personal dreams of the disabled person can be realized.

Each network (consisting of 3 to 15 members) is a unique process, as each individual to be supported is a unique individual with specific characteristics in age, background, type of disability, etc. Since the start of the Flemish PTP-project in April 2006, about 300 people with disabilities have participated. In the plans that were running in 2007, a majority concerned people with light (18%) or moderate (24%) intellectual disabilities or with autism (26%). 70% of the participants below the age of 23 live at home with their parents. In the “adult group” (23 years and older) still 20% of the participants live with their parents, 20% live alone, and the others are spread over different forms of institutional care settings. (3)

2. How does the network work?

At the start of the network, there is an intensive coaching by PLAN Association. How to select the participants and the “central facilitator”? How to look for different solutions? How to create a good communication and interaction? How to make reports?

Several meetings (with an average duration of 4 hours) should take place, the minimum of which is two per year. Listening to and understanding of the personal aspirations of the person with a disability is the main object of the first meetings. His or her limitations should be described, while the main focus is upon his or her capabilities and wishes. Later on, concrete steps (such as looking for an adequate school or day activity, for expanding the circle of personal friends, for professional help, etc..) are set forward and followed up. The program can be temporarily suspended, e.g. when the central facilitator moves to another town and has to be replaced.

The network is not registered in a formal contract. Participants contribute on a voluntary basis. Gradually, the role of the professional coach is diminishing. The process ends only when there is an agreement within the group that there is no longer a need for it.

3. PFP and de-institutionalization

De-institutionalization is not the central aim of the Flemish PFP-project. Actually, since the start of the project, only two persons with a disability have left the residential setting they were living in (4). PFP however is a barrier against professionals taking over the personal life expectations of the person with a disability. Almost all of the participating people with disabilities witness that their own life aspirations are being listened to and supported. Parents of disabled people are re-assured that their children will be taken care of by people who really have an emotional and long-term investment in their children.

It is unclear yet how far the PFP’s will make real changes in the personal lives of people, especially of those who are staying within institutional care settings. An evaluation of the results of PFP’s is planned for the year 2009 (5).

While it has become clear that a support network is essential in realizing a personal life plan, there is no legal status yet for the actions (such as negotiating with assistance agencies) performed by the members of the support group.

Antidiscrimination legislation, direct payments, personal future planning: all are tools towards empowerment of people with disabilities and to their de-institutionalization. When Flanders eventually will decide to use them on a much larger scale, maybe the never ending trend of making year after year more people with disabilities dependent on institutionalized forms of care could finally be broken?

Notes
(1) Annual report 2007 of the Personal Future Planning Project, 20.
(2) Planned Lifetime Advocacy Network.
(3) Annual report 2007 of the Personal Future Planning Project, 30-34.
(4) Annual report 2007 of the Personal Future Planning Project, 33-34.
(5) Research project, conducted by Prof. M. Van Regenmortel, Faculty of Social Sciences, K.U.Leuven