The following is an article shared by a group of young adults with PWS established in 2023 in Löhne, Germany. They meet regularly to discuss topics like leisure, relationships, living, and equality. They aim to represent people with PWS in IPWSO and promote greater inclusion and self-advocacy. The group was founded following the establishment of IPWSO’s People with PWS committee which aims to determine the best mechanisms for IPWSO to engage with people with PWS so they may share what they think is important.
We are a group of 12 to 16 participants, both men and women, from various parts of Germany. Currently, participants come from Aachen, Herne, Löhne, Lübbecke, and Bad Schwartau.
We are all young adults with PWS between the ages of 20 and 46.
Goals of the group
At the group’s first meeting, the goals the group wanted to pursue were determined.
- The group will address the following topics and share the results with other people with PWS and represent them to the IPWSO:
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- Leisure time
- Relationship and partnership
- Living
- Work
- Equality
- The group wants to work out how people with PWS can be represented in the IPWSO and how they can represent themselves in the IPWSO.
Location and frequency of meetings
The group met for the first time on September 29, 2023. Since then, there have been a total of 10 meetings. Each meeting is attended by 10 to 14 people.
Four meetings are planned each year.
The meetings take place in Löhne (North Rhine-Westphalia), always between 2 p.m. and 4 p.m.
Course of the meetings
Typical course of the day from the perspective of a participant from Herne
“We have lunch at 11:30 a.m. and meet at 12:00 p.m. in the new building and leave Herne for Löhne .
It takes us 1 hour and 35 minutes by van.
The meeting starts at 2 p.m.
We talk about issues like equality, how we want to live and work, how we want to have a say in the IPWSO, …
Then there is a break from 3:00 p.m. to 3:15 p.m.
Afterwards we work in two small groups or all together.
The meeting ends at 4 p.m. and we head back home.”
Previous content and results
Of the collected topics (see “Goals of the group” above), two topics have been addressed so far:
- Leisure
- Relationship and partnership.
Actually we are working on the topic: “living – how and where”
The topics are always processed according to the same pattern:
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- What we would like to see in this area
- Suggested solutions that we have developed in this area.
Examples from the leisure sector
The following leisure activities should be available:
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- Visit to an amusement park or climbing park.
- Visit to an animal park or zoo.
- Holidays in your own country or abroad with the support of parents or carers.
- Holiday in a leisure center, youth hostel or hotel.
- Day trips with the support of staff, parents or carers.
- Sports activities such as horse riding or swimming.
- There should be holiday offers for couples.
Examples of what we would like to see, and proposed solutions in the area of leisure
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- Leisure activities must be tailored to the needs of people with PWS.
- It must be ensured that the staff required to provide support are paid.
- Training courses should be offered to people with PWS and other disabilities so that they can make better use of leisure activities, for example. The training can be provided in the workshop, for example, as a work-related measure.
- When offering leisure activities or vacations, providers must also be informed about the issue of food for people with PWS.
- Leisure or holiday activities must be accessible so that many people with PWS can use them.
- The food offerings at the cinema need to be changed; otherwise, it will be too difficult for people with PWS to resist the food or drink on offer. There should be better food options at the cinema or at events. A list of all food and drink options available for purchase should be posted. The calorie content of food and drinks should always be provided. The fat content should be clearly visible. There should be red, yellow, and green markings, like traffic lights. This will help people with PWS plan their visit to the cinema better. Staff should provide assistance with planning if the person with PWS requests it.
- People with PWS also have to learn to make changes, for example in terms of independence and their own eating.
- If leisure activities and vacation offers are made for people with PWS, the providers must be informed about PWS.
- When hiking, you have to make sure you choose paths that are accessible to everyone. Walking fast and slow must be possible.
- It must be regulated that all supervisors can be paid for leisure activities. There are various ways this can be paid:
- People with PWS pay by themselves if they have enough money.
- Parents or relatives pay if they have enough money and if they were involved in the planning.
- The state or other cost bearers should also cover this.
- The IPWSO should also co-finance.
- The individuals and institutions listed may finance it alone or together.
The group discussed how to convey this request to the various target groups.
One example is that experiences from leisure activities can be evaluated and made available to others who are also planning a leisure activity.
Examples of what we would like to see from the topic area of relationships and partnerships
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- Topics covered in this area included: friendship, feeling love, being together, wanting children.
- There should be opportunities to meet friends or partners.
- There are difficulties for people with PWS to establish relationships.
- Shyness may occur, so both partners should have opportunities to retreat.
- Honesty in a relationship is important.
- Everyone should live the way they want.
- You should be accepted as you are.
- Agreements with your partner are important so that you can respond to their wishes.
- The partner should not put pressure on the partner.
- Being cheated on or having two relationships at the same time can lead to the relationship ending.
- It happens that other people’s feelings are played with.
- Using an app makes it possible to say how you feel.
- There should be time to build a relationship.
- It should be possible for women and men to live together, for women and women to live together and also for men and men.
- There should be an acceptance of love in relationships of people with PWS by others.
- There should be events, such as a singles disco, for meeting other people. It should be possible to participate in dating fairs or organize them yourself.
- There should be the possibility of support with questions and problems from staff, parents and relatives.
During the last two annual meetings of the PWS Association Germany eV in Hamburg (2023) and in Marburg (2025), the group provided information about the work and goals of the group by the opening speech and also at a small information table.
As part of the International Caregivers Conference in May 2024 in Berlin, Christian Blohm (pictured) gave a presentation in English about the content and goals of our group.
At its meeting in November 2024, the group held an online exchange with representatives of the board and various IPWSO committees. The discussion focused on future collaboration with IPWSO and common tasks related to the participation of people with PWS in IPWSO.
Further steps and objectives
In future meetings, we plan to connect with other groups of people with PWS from Germany and other countries. We want to exchange ideas about the services and topics they discuss in their groups. We also want to discuss with them how people with PWS can be represented in the national PWS association and the international PWS organization in the future.
Our group in Löhne is an open group.
Anyone with PWS can attend our in-person meetings.
We are always happy to welcome new members.
You can register for the meeting at nhs@pws-in.de
With kind regards
For the group:
Christian Blohm, Vanessa Lehmann, Arne Scherberich , Andrea Hammer, Pia Bruchhage, Janek Busch, Hendrik Röhrig, Alina Behlert, Katharina Knauff, Tristan Cirksena, Mohamed Jaghou , Melissa Sophie Walther, Yasmin Giesenberg , Norbert Hödebeck-Stuntebeck (assistant)