Greetings from Denmark

Mit navn er Jytte Helgogaard, og jeg bor i Danmark.

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My name is Jytte Helgogaard and I live in Denmark.

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My daughter Cecilie is 28 years old and was diagnosed with Prader-Willi Syndrome at the age of 8 months. She attended special schools during her childhood and youth, and she moved away from home when she was 20 years old. She moved to Solvang, a residential home for persons with PWS situated on a small island called Fejoe – 3 hours by car away from us and 1 hour by ferry away from the North of Germany. Here she lives together with 8 adults with PWS and she has her own apartment consisting of a living room, a bedroom, a bathroom and a tea kitchen with a total of about 60 square meters.  

                                   

(Picture: Solvang, Fejoe – the apartments)

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Besides the apartments, Solvang consists of a house with a big dining room where all the meals are served. Solvang also has its own stables with horses and a farm shop where some of the residents restore old items of furniture to be sold in the shop. Cecilie has her own horse in the stable and her daily life includes horse riding, caring for the horses and other work in the stable along with field work. Each year they all go to a special music festival, abroad, activity holidays as well as the PWS summer camp arranged by the Danish Association of PWS.

Once a month Cecilie visits us for a weekend. She goes by taxa thus she doesn’t have to travel by herself. That goes for holidays as well.

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Without doubt, the biggest challenges we have experienced during Cecilie’s life have been her school offers which haven’t been specifically aimed towards PWS. We have always had positive experiences with the health care system as well as with the social welfare system which have had a very good understanding of the specific problems and needs related to PWS.

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At Solvang Cecilie has a wonderful life doing things that interest her (horses). She is always happy, her weight is fine and she has an active social life with the persons she lives with.

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My piece of advice and recommendations for families with children and young persons with PWS will be that – when adult or about to move away from home – they should live in a residential home just for PWS. It is so important that people with PWS get the opportunity to live in a home with staff that has a thorough understanding of PWS including a daily structure, good and healthy day programs and last, but not least control of the food.

Danish Group Homes for PWS

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

I want to go home now

Once upon a time I never thought I'd hear those words without assuming it meant back home to our house.  They were often said, and most frequently when everyone else was enjoying themselves on a long-planned outing, usually to the beach.

"I want to go home", my daughter would say.  "I'm too hot" or "I'm too tired", or anything that seemed designed to interrupt an otherwise pleasant day.  And so it was that outings became truncated, or even avoided and often my husband would take the older siblings on their own holiday - tramping, or skiing, or out to the beach - while I would stay behind with our youngest, thus avoiding having holidays cut short, or "ruined" (according to her sisters).

Separate holidays in our household became the norm, with me taking the youngest off somewhere for a couple of days special time together (often dropping in on other parents who had a child with PWS), and the older ones having some Dad-bonding time.  It worked rather well - no arguments, no fighting, no locking food away and losing the keys - in fact it's something we still do years later (yes, and we still lose the keys...).  We have the celebratory holidays together: Christmas, Easter, birthdays,  but I've noticed that the youngest daughter (now 29) really struggles with anything over 5 days.  Why?  Well, I think it's because she now has her own home, with her own things around her, her own cat, and staff who genuinely like being with her and don't mind repetitive conversations, lengthy window-shopping excursions, or just hanging out with her.  For sure they have 'off' days when arguments become heated and rules are broken, but she would still prefer to live her own life, visiting our home when she wants to.

It's such a relief to know this is her choice and it's something she is completely happy with.  It's been the best residential option so far and, as she has matured, it seems to have become happier.  The staff are very open with her, and with us, but I no longer jump at the ring of the telephone thinking it will be some crisis I have to deal with.  Best of all, she's lost 10kg this year.  She enjoyed her Christmas, was happy to see her small nephew and niece, was happy with her presents (and the promise of a holiday later in the year), but after 5 days when she said, "I want to go home now", I knew it was not to ruin things, but merely a choice she could happily make.