Individual support planning: perceptions and expectations of people with intellectual disabilities in The Netherlands.
Dutch adults with ID feel left out of their own support plans, showing that paperwork alone does not create person-centred care.
01Research in Context
What this study did
Fahmie et al. (2013) talked with Dutch adults who have mild or moderate intellectual disability. They asked how the adults felt about their own support-plan meetings.
The researchers held group chats and one-to-one talks. They wanted to learn if people felt they had real say in the plans written about them.
What they found
Most adults said they just sat and listened. Staff filled out the forms with little input from them.
People saw the plan as office work, not as a tool for their own dreams. Many did not know what the papers said.
How this fits with other research
Vassos et al. (2016) looked at many studies and still found small gains in choice-making and community outings for people who used person-centred plans. The Dutch field data help explain why those gains stay small: plans often stay on the shelf.
Torelli et al. (2023) later tracked over 20 000 adults. When plans truly held personal goals and case managers were easy to reach, people reported more control and better mood. Their large numbers back up the Dutch story: quality of the process, not the form itself, drives change.
Holburn (1997) had painted a brighter picture: verbal adults in the UK liked their meetings. The Dutch study shows the gap: if you talk easily you may still be left out when staff rush or lack tools to include non-verbal members.
Why it matters
Your next plan meeting can flip the script. Bring plain-language agendas, photos, or simple yes/no cards. Pause often and ask, 'What do you want?' Write that answer in the person's own words. One small shift turns a form into a voice.
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02At a glance
03Original abstract
BACKGROUND: According to Dutch jurisdiction, individual support plans (ISP) should register the mutual agreements between a person with intellectual disabilities (ID) and a professional service organisation with respect to the support that will be provided. In planning for support, active involvement of both parties is necessary. The current study focuses on the perceptions and experiences of Dutch persons with ID with respect to their involvement in their ISP. METHOD: Data were gathered through semi-structured interviews with 61 people with mild to moderate ID. Participants were recruited in 23 Dutch service provider organisations. A systematic qualitative analysis was performed on the interview transcripts. RESULTS: Although persons with ID are present at their ISP meeting, active client involvement in developing, executing and evaluating the ISP is not common practice. Issues of accessibility and lack of control over the process and content of ISP hamper effective involvement of people with ID. CONCLUSIONS: The study raises questions concerning ISP practices in the Netherlands. The question needs to be addressed as to how to facilitate active involvement of people with ID in planning for support. The results further suggest that support organisations perceive an ISP rather as a formal document to comply with bureaucratic rules than as an instrument of empowerment to enhance control of persons with ID over their own lives.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01598.x