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ALZHEIMER'S DISEASE AND DEMENTIA IN DOWN SYNDROME AND INTELLECTUAL DISABILITIES
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Mission

The SIRG has as its founding principles:

  • Provide a focus for the worldwide exchange and dissemination of research and practice, as well as networking, in the field of persons with profound multiple disabilities. Individuals with profound multiple disabilities form a heterogeneous group. The 'core group' consists of individuals with such profound cognitive disabilities that no existing standardized tests are applicable for a valid estimation of their level of intellectual capacity and who often possess profound neuromotor dysfunctions like spastic tetraplegia as well. Apart from profound intellectual and physical disabilities, it has been demonstrated that they frequently have sensory impairments. Individuals with PMD form a physically very vulnerable group of persons with a heavy or total dependence on personal assistance for every day tasks, 24 hours a day. The SIRG/PMD brings together researchers and practitioners with different disciplines and from different countries.
  • Promote cross-national, multidisciplinary collaboration in the area of persons with profound multiple disabilities. The ultimate aim of the group is to improve the quality of life or and services for people with profound and multiple disabilities, their carers, and their families.
  • Provide a framework for the collation of information relating to the research interests, expertise, and publications of group members. Within the overall process of collaboration, the views and contributions of nonprofessionals, including people with intellectual disabilities and their families and friends, are a fundamental component, and will be given the priority they deserve.

The SIRG works by means of a newsletter, a mailing list, and two-yearly round table conferences. The group also makes several contributions on the European and World Congresses of IASSID.

Membership

Membership is open to persons with an interest in any facet of research or application related to persons with profound intellectual and multiple disabilities:

  • researchers in the psychological, educational and medical fields;
  • teachers, therapists, professionals in schools and services for persons with profound multiple disabilities;
  • family members or other significant persons in the lifes of persons with profound multiple disabilities;
  • representatives of volunteers or service organizations.

Contactperson .

For information on joining the SIRG/PMD, contact the SIRG Secretary,

Bea Maes at [email protected]

or write to

Bea Maes
IASSID SIRG/PMD Secretary
Centre of Disability, Special Needs Education and Child Care
University of Leuven
Vesaliusstraat 2, B-3000 Leuven
Belgium

Board members

Carla Vlaskamp, PhD (University of Groningen, the Netherlands), co-chair and IASSID Council Representative from the SIRG/PMD

E-mail: [email protected]

Loretto Lambe, PhD (White Top Research Centre, Dundee, United Kingdom), co-chair

E-mail: [email protected]

Han Nakken, PhD (University of Groningen, the Netherlands), past chair

E-mail: [email protected]

Bea Maes, PhD (University of Leuven, Belgium), secretary

E-mail: [email protected]

Barbara Fornefeld, PhD (University of Köln, Germany), member

E-mail: [email protected]

Mats Granlund, PhD (University of Stockholm, Sweden), member

E-mail: [email protected]

Paul Pagliano, PhD (School of education, Townsville, Australia), member

E-mail: [email protected]

Knut Slåtta ( Torshov Resource Center for Special Education, Oslo, Norway), member

E-mail: [email protected]

Mary Arnold (Ark Regional Services), member

E-mail: [email protected]

Anne Brown ( White Top Research Centre, Dundee, United Kingdom ), member

E-mail: [email protected]

Member list 2005

See: SIRGPMD-members.pdf

Plans for the near future

Second Roundtable of the Special Interest Research Group

on Persons with Profound Multiple Disabilities

October 6-8, 2005

Bruges, Belgium

Topics include:

Communication interventions

Health care, interventions and alternative approaches

Staff attitudes and skills

Quality of service provision and support

For further details see: SIRGPMD-invitationroundtable.pdf

For futher information, contact Bea Maes at [email protected]

Different symposia will be organised at the Second European IASSID-Conference in Maastricht; 2th-5th of August, 2006.

 

 

Reports

Report Montpellier ( PDF Document, 14 Ko)
Report June 2005 ( PDF Document, 14 Ko)
Roundtable invitation ( PDF Document, 30 Ko)

 



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     International Association for the Scientific Study of Intellectual Disabilities
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