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Personalization, self-advocacy and inclusion: an evaluation of parent-initiated supported living schemes for people with intellectual and developmental disabilities in the Netherlands
- Authors:
- REINDL Marie-Sol, WALTZ Mitzi, SCHIPPERS Alice
- Journal article citation:
- Journal of Intellectual Disabilities, 20(2), 2016, pp.121-136.
- Publisher:
- Sage
- Place of publication:
- London
This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants’ personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building. (Edited publisher abstract)
Choice processes and satisfaction with care according to parents of children and young adults with intellectual disability in the Netherlands
- Authors:
- NEIBOER Anna P., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(2), June 2011, pp.127-136.
- Publisher:
- Taylor and Francis
Quality information on care for people with intellectual disabilities has become available in the Netherlands in recent years. However, despite the expressed desire for access to information on care providers, use of the available information seems to fall short of expectations. There is limited information on the decision-making processes and on what influences it. This study was designed design to better understand the effects of providing decision-support information only (services/quality indicators) and providing a combination of information and personal decision-making support (counselling/peer meetings) on the choice process and satisfaction with care. The study population consisted of 147 parents who sought protected living arrangements, assisted daily activities, or both for their child. The form of support affected the choice process, but did not affect satisfaction with care. Decision-support information combined with personal decision-making support led to less frequent switching of care providers and to more satisfaction with choice information. The parents made limited use of online decision-support information, but did use decision counselling. It is concluded that this population is better supported with an intensified personal approach rather than through the currently available generic approach using websites.