Damien Jones, Cluster Manager at Interaction Disability Services Ltd, writes about a group home established by IDS in 1992 in the Hills area of Sydney, Australia.
“Interaction Disability Services manages a group home set up specifically for adults with PWS. Catering to the needs of 3 people with PWS, the programme was the first of it’s kind in Australia. A number of other houses for people with PWS have been established since the IDS model opened and we are hoping that this trend continues.
The day begins at 6 am for the staff members. Breakfast is a set menu, identical for each resident, prepared in a locked kitchen and served at the same time each day to reduce anxiety. Portion sizes and presentation of meals are the same for each resident at breakfast and dinner. At lunch the residents eat separately and so the meal varies in caloric value, depending on the weight and health of the individual. The meals are generally big in size but low in calories. This is achieved by using a lot of salad and watering down any liquid meal.
The house has a number of rules, which apply equally to all 3 residents, who accept them as fair. These include locking the kitchen, not handling money and the requirement that each resident must follow their routine. There are routines to be followed including showering, checking skin for infection due to skin picking, receiving a packed lunch and all the other things involved in getting the residents to work on time. One of the residents exercises on a treadmill in the morning, the others in the afternoon. Everything is done in a set sequence, negotiated in advance with each individual resident. Each resident helps to decide the order of the routine but once it is finalized it must be adhered to, unless an unforeseen event forces a change.
All 3 of the residents work in supported employment. This has been an ongoing challenge for both the employer workshops and IDS. The parents of the residents have also been heavily involved in educating the workshops about PWS and encouraging their adult offspring to continue going to work even when problems occur. Afternoons are busy and include individual outings for banking, shopping, and craft groups. This is usually linked with exercise and a low fat coffee, but only after the routine has been followed. The residents realize that if there is a tantrum and they are too upset to leave the house, they will not go unless they calm down. This helps to keep things on track. The busy routine also reduces skin picking and time to sit and think about food. In the house there is a routine board with the sequence of events listed for each resident to refer to. There is also an activity board, stating who is going where each day. This helps everybody to be on the same page.
Weekends are also busy. Exercise related outings are encouraged and often come with a reward. For example if a resident chooses to do swimming and does 10 laps of the pool, they can have an icy pole. This is only given at the end of the outing and so the residents realize that they need to comply with any reasonable requests and complete the agreed exercise in order to obtain the reward. Other outings include regular trips to the movies, bowling, bush walks and trips to local shops and parks. The manager has an individual meeting with each resident on a weekly basis, and negotiates all of this in advance, in detail.
We believe that the program works well for the individual residents and that we have been able to help them to live in an active and healthy manner. This has only been achieved with the help of the parents, the PWS clinic and the health professionals. Although we realize that this is only one way that somebody with PWS can live a
structured, active and healthy lifestyle we would like to see the government fund more programs like ours. We believe that in programs like the one we run, people with PWS are given the chance to have the benefits of reduced anxiety that comes with a structured routine. At the same time they are able to share their experiences with others who have to follow the same diet and exercise regime in order to remain healthy and this can help. Although the condition seems unfair when we compare someone with PWS with the broader community it can be comforting for the residents to have others around them who are on the same pathway and understand the difficulties with living with PWS”