Supporting parents with intellectual disabilities – facts and experiences Ulla Riesberg, MOBILE – Selbstbestimmtes Leben Behinderter e. V. - Germany

Supported parenthood for intellectual disabled parents A pilot project - 2006 to 2009 Building up a support service for families Networking with different services in the community Research on the living conditions and support of parents with disabilities

PID in Germany Research started in the beginning of the 1990ies by Prof. U. Pixa-Kettner vom Bremen First survey in 1993: 969 parenthoods – 1366 children Follow-up research in 2007 1584 parenthoods - 2199 children Increase of 40%

Prejudices against PID People with intellectual disabilities have children with intellectual disabilities have more children than the average Parents with intellectual disabilities have insufficient parental skills and they are not able to develop them. abuse and neglect their children

1. Prejudice: Children have disabilites as well Most intellectual disabilities are non genetic High risk of developmental delay in early childhood Language development often affected Necessity of supporting child development by earlyintervention programs etc.

2. Prejudice: More children than the average Pregnancies are often unwanted Lack of sex education and insufficient birth control Separation of parent and child often lead to the desire for a second child

3. Prejudice: Insufficient parental skills Maternal sensitivity and intuitive parental skills do not depend on intelligence no mono-causal relation between parental skills and intellectual disabilities Social factors like poorness, unemployment, bad health conditions, low level of education, experiencing alcoholism, violence or abuse affect parental behaviour

4. Prejudice: high rate of neglect and child abuse No mono-causal attribution of intellectual disability and child neglect and child abuse Social factors mentioned above should be taken in account here as well

Disadvantages of parents with intellectual disabilities Our society is an Information society, High amount of written information People with intellectual disabilities do not process information by the way need time and repetition to learn

Special Challenges for practioners Difficulties of parents to recognize the need of the child and fulfill it FIRST! Supporting families with preadolescent and adolescent children

Support parents to fulfill the need of the child FIRST! Recognizing the needs of the child and fulfilling it as a basic parental skill Lacking skill might be a reason for separation of parent and child Lack of methods and ideas how to teach parents to put the own needs aside Be aware of the parents needs High correlation between life quality and family atmosphere

Families with preadolescent and adolescent children Puberty is a challenge for all parents, for every family! trouble with the changes and the new behavior of their children. people with intellectual disabilities have low self-confidence and self-esteem. Revolt of the children causes high insecurity and helplessness

Parents with intellectual disabilities can develop parental skills often grow through parenthood deserve the chance to live together need a strong lobby

Supporting parents with intellectual disabilities means to develop new methods and ideas for family support to do research on the needs of parents with disabilities and there children to accept limitations, and realize when a separation is necessary

Literature: Albert Lenz, Ulla Riesberg, Birgit Rothenberg, Christiane Sprung: Familie leben trotz intellektueller Beeinträchtigung. Begleitete Elternschaft in der Praxis. Freiburg, 2010 Gwynnyth Llewellyn, Rebekah Grace-Dunn and Marjolien Dibden: As Children Grow Older: Into the Future for Parents with intellectual disabilities, Melbourne 1998 Ursula Pixa-Kettner: Elternschaften von Menschen mit geistiger Behinderung in Deutschland. Ergebnisse einer zweiten bundesweiten Fragebogenerhebung. In: Geistige Behinderung, 4/07, Jg. 46, S. 309 – 321 Ursula Pixa-Kettner und Kadidja Rohmann: Besondere Familien – Welche Unterstützung brauchen Eltern mit Lernschwierigkeiten und ihre Kinder? – Forschungsbericht, Bremen im April 2012 Magnus Prangenberg: Zur Geschichte der internationalen Fachdiskussion über Elternschaft von Menschen mit einer geistigen Behinderung. In: Ursula Pixa-Kettner (Hg.) Tabu oder Normalität? Eltern mit geistiger Behinderung und ihre Kinder. Heidelberg, 2006. S. 25 – 46

Thank you for your attention! Contact: Ulla Riesberg MOBILE – Selbstbestimmtes Leben Behinderter e. V. Steinstr. 9 44147 Dortmund Tel. 0049/(0)231/ 477 32 16 23 Ulla.riesberg@mobile-dortmund.de