Parents with intellectual disabilities: (evidenced based) intervention programs, best practices and parents' stories

Friday, 24th September 2021 Meet the Expert Marja W. Hodes 04:45pm - 05:30pm Room: Humboldt

More and more persons with intellectual disabilities are starting a family of their own, often based on the intense desire to become a parent. However, when we are looking at the choice to become a parent, persons with intellectual disabilities are challenged a lot. The parties to the United Nations Convention on the Rights of Persons with Disabilities (2006) have seen it as pertinent to affirm the right of persons with disabilities to start a family and calls for appropriate assistance to persons with intellectual disabilities in the performance of their child-rearing responsibilities.

Several studies underpin that parents with intellectual disabilities (ID) are able to learn parenting skills and can improve parenting behaviour. Three important factors are contributing to this result: parents are daring to ask for support and accept the support offered; parents are provided with effective parenting support programs and parents have access to a supportive social network.

In the Netherlands from 2008 until 2017 the consortium ’What works for parents with intellectual disabilities’ (VU – Amsterdam) conducted research based on these protective factors. An evidenced based video feedback intervention for the typical population, based on attachment and coercion theory, was tailored and tested for parents with ID (VIPP-LD) in a randomized controlled trial and demonstrated to alleviate parenting stress for the whole group and the group parents with low adaptive functioning improved in parenting behavior. At the moment this intervention is becoming implemented. Professionals are in training and start to support families headed by parents with intellectual disabilities in settings where families live independently in their own houses and in families living in special family support homes.

In this presentation we will show how the results of the research done is transferred to practice. We take you into the process of implementation, the way how to introduce this evidenced based intervention as a valuable treatment in families headed by parents with ID, the way how to get government interested, involved and supportive (also concerning the financial part) and the training of professionals. We take you to the best practices but also to the lessons learned. And last but not least we will share the stories of parents themselves, the way they feel supported in their parenthood.

Simple and to the point:

  • Many people with intellectual disabilities have the desire to become parents
  • People with disabilities have a right to start a family and to appropriate support in raising children
  • Starting a family can be successful if there exist support programmes, if parents dare to ask for and accept help, and if there is a stable social network
  • A large study in the Netherlands has shown how a support programme reduced parental stress and helped parents with higher disabilities to cope better with their children
  • The implementation and financing of the programme are described and the parents themselves also have their say with reports on their experiences