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Supporting parents with intellectual disabilities – facts and experiences

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

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Supporting parents with intellectual disabilities – facts and experiences

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  1. Supportingparentswithintellectualdisabilities – factsandexperiences Ulla Riesberg, MOBILE – Selbstbestimmtes Leben Behinderter e. V. - Germany

  2. Supportedparenthoodforintellectualdisabledparents 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

  3. PID in Germany • Research started in thebeginningofthe 1990ies by Prof. U. Pixa-Kettner vom Bremen • First survey in 1993: 969 parenthoods – 1366 children • Follow-upresearch in 2007 1584 parenthoods - 2199 children • Increaseof 40%

  4. Prejudicesagainst 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

  5. 1. Prejudice: Childrenhavedisabilitesas well • Most intellectualdisabilitiesare non genetic • High riskofdevelopmentaldelay in earlychildhood • Language developmentoftenaffected • Necessityofsupportingchilddevelopmentbyearlyinterventionprograms etc.

  6. 2. Prejudice: More childrenthantheaverage • Pregnanciesareoftenunwanted • Lack ofsexeducationandinsufficientbirthcontrol • Separation ofparentandchildoftenleadtothedesirefor a secondchild

  7. 3. Prejudice: Insufficient parental skills • Maternalsensitivityand intuitive parental skills do not depend on intelligence • no mono-causalrelationbetween parental skillsandintellectualdisabilities • Socialfactorslikepoorness, unemployment, badhealthconditions, lowlevelofeducation, experiencingalcoholism, violenceorabuseaffect parental behaviour

  8. 4. Prejudice: high rate ofneglectandchildabuse • No mono-causalattributionofintellectualdisabilityandchildneglectandchildabuse • Social factors mentioned above should be taken in account here as well

  9. Disadvantagesofparentswithintellectualdisabilities • Oursocietyis an Information society, • High amountofwritteninformation People withintellectualdisabilities • do not processinformationbytheway • need time andrepetitiontolearn

  10. Special Challengesforpractioners • Difficulties of parents to recognize the need of the child and fulfill it FIRST! • Supporting families with preadolescent and adolescent children

  11. 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

  12. 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

  13. Parentswithintellectualdisabilities • candevelop parental skills • often grow through parenthood • deserve the chance to live together • need a strong lobby

  14. Supportingparentswithintellectualdisabilitiesmeans • to develop new methods and ideas for family support • to do researchon the needs of parents with disabilities and there children • to accept limitations, and realize when a separation is necessary

  15. Literature: • Albert Lenz, Ulla Riesberg, Birgit Rothenberg, Christiane Sprung: Familie leben trotz intellektueller Beeinträchtigung. BegleiteteElternschaft in der Praxis. Freiburg, 2010 • Gwynnyth Llewellyn, Rebekah Grace-Dunn and MarjolienDibden: 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 KadidjaRohmann: 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

  16. Thankyouforyourattention! 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

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