Ulla Riesberg,
MOBILE – Selbstbestimmtes Leben Behinderter e.
V. - Germany
A pilot project - 2006 to 2009
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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
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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%
People with intellectual disabilities
 have children with intellectual disabilities
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have more children than the average
Parents with intellectual disabilities
 have insufficient parental skills and they are
not able to develop them.
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abuse and neglect their children
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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.
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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
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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
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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
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Our society is an Information society,
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High amount of written information
People with intellectual disabilities
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do not process information by the way
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need time and repetition to learn
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Difficulties of parents to recognize the need
of the child and fulfill it FIRST!
Supporting families with preadolescent and
adolescent children
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Recognizing the needs of the child and
fulfilling it as a basic parental skill
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Lacking skill might be a reason for separation
of parent and child
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Lack of methods and ideas how to teach
parents to put the own needs aside
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Be aware of the parents needs
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High correlation between life quality and
family atmosphere
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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
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can develop parental skills
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often grow through parenthood
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deserve the chance to live together
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need a strong lobby
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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
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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
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