Contributed by Dorica Dan, Romania
EURORDIS, the European Organisation for Rare Diseases, has visited several Danish Group Homes for PWS last October. The visit occurred in the scope of the Joint-Action for Rare Diseases from the European Union Committee of Experts on Rare Diseases (EUCERD), where EURORDIS leads a work package on Specialised Social Services and Social Policies.
Dorica Dan, work package leader and President of the Romanian PWS Association, and Raquel Castro, Social Policies Manager at EURORDIS tell us what they thought of our group homes:
“We have had the chance to visit such different structures as Bofællesskab Myrholmsvej (Aarhus), Grankolen (Allingåbro), Solvang and Marienlund (Fejø) and Orionvej 60 (Næstved). None of these services is exactly using the same model, yet all of them seem to be very successfully integrating their residents and helping them to be more autonomous.
We’ve realised that these houses had residents with different spectrums of the disease and each housing facility adapted its structure and activities to their residents. We’ve seen residents riding horses and we’ve seen others sitting quietly at home making puzzles and all of them looked rather satisfied.
In all houses there was an important connection with the staff, which is permanently there helping residents with their daily routine and activities, making them feel supported and safe.
We’ve been told that several of these residents have tried to live on their own and have been unsuccessful in keeping their health and behaviour at their best levels. Supporting staff has shown to be key for these residents to be able to be more autonomous while staying healthy.
The purpose of the visits is to get to know certain Specialised Social Services for Rare Diseases in different European Countries in order to compile case study documents which can be used as advocacy tools and sources of inspiration. We consider that other countries might gain a lot from learning with the experience of the Danish PWS Group Homes and will be broadly sharing the information we’ve collected in Denmark.”
«As any parent in the world, I would like to have an independent daughter, even if she has PWS. I can say that she is well integrated into community but, until there will be a treatment to manage the food driven symptoms caused by PWS, she may not live safely really independent. She learned and achieved things that looked impossible for anybody but the problem of the food control is extremely difficult for all of us.
Throughout our visit in Denmark, I couldn’t stop thinking which of these living arrangements would be the best for my daughter, which type could be organised in other countries (including Romania) and of course, I realized once again that the transition to independent living is solved just in a few countries in Europe.
We have to learn and understand that supervision from social workers in these homes has to be accepted as a supportive reality and as part of the independent living. The “arrangements” for this change in our children’s lives will depend always on our child’s individual needs and abilities, the needs of the others living in the same home, resources available in the community, our child’s dreams and hopes, etc. There is a need of sharing the experience of parents with the services providers and between the social workers, involved in this field. We have also to think that options and wishes may change over time, too.»
Dorica Dan, mother of Oana