Residential care is one of the most important things we need to think about for our children as they reach adult-hood. This is something that IPWSO has taken very seriously, and, after two international conferences specifically designed for caregivers, a fantastic resource has been developed, "Best Practice Guidelines for Residential Care". I wish this resource had been available when my daughter (now 27 yrs) first went into residential care.
She has been in residential care since she was 18 years old. At first, I thought she could manage in a small house by herself (with 24 hour staff care), but somehow this didn't work out. Everything that could go wrong, went wrong. She wanted to cook for herself (with supervision) and I taught her how to stir-fry food, something that was quick and easy. But on many occasions she burnt the food and had to cook more (thus depleting the weekly allowance). On other occasions she blamed staff for taking food from her fridge & cupboards. She wanted to entertain and cook for friends, family and neighbours; she wanted to to try new foods, new recipes, and to do her own shopping. After 4 weeks of this, we changed the rules. Food would be cooked outside her house and brought in daily. I did this myself for a number of years until staff took over and provided meals cooked off-site.
Because meals were now controlled, she took to pan-handling in the neighbourhood. She was extremely opportunistic and found money very easily (staff learned quickly not to leave cars unlocked, handbags unattended) and was blamed for missing money (creating denial melt-downs). She executed brilliant reasons for needing hand-outs, money, cigarettes, extra food and so on. One of the best was that she was a "solo mother with 3 children under 5 years old - one with a broken arm, the other who wet the bed every night, and the third who was just staring school. Their 'father' looked after them during the week, but dumped them on her during the weekend and she had no food to give them." When this ruse was discovered, "Elder Abuse" had already been called in as she was going around to not only choose the food from the cupboards herself, but cook it at the neighbour's house.
We shifted her to another house (still solo, but with 24 hour care) where there were no shops close by, but the neighbourhood was not great and neighbours were bullies. She also managed to give her staff the slip and find new avenues of food, money, and, now cigarettes. Six months later, we found another house with a beautiful little garden, no shops, and on a corner, so only one neighbour. Again it was staffed night and day, but by now, my daughter really did have the hang of how to play staff off against one another, frighten them, and bully them. There was a serious complaint laid, police involvement, and a court decision that she was not able to live in the community under the current circumstances. She was moved to a very secure place where everything was locked down, and where there were a mix of clients who had also been through the courts. None of these clients had PWS; she was the only one. For her, to live with other people under such strict rules, was a big wake-up call. This lasted a year, with a transition farm-house for the last few months. I was proud of the way she had 'learned her lesson', but not proud of the fact she had put on a lot of weight. This last home was full of big, strong, men who ate big meals. She was happy about that!
During the year she was there, I spent a great deal of time searching for providers for when she got out, who would be prepared to abide by the latest
IPWSO Best Practice Guidelines for Residential Care. I spent a long time combing the Best Practice Guidelines for the best ways they would fit our New Zealand culture. I changed a little, but not a lot. After some months of talking to providers, we chose one who seemed very enthusiastic and ready to take on the challenge. We put an extreme amount of training and support into the staff (much from the IPWSO Best Practice Guidelines) and brought in two clients with PWS (one, being my daughter, and the third is without PW) and staggered their arrival over a period of 2 weeks, and sat back to watch. The honeymoon period lasted another 2 weeks and these girls had the staff exactly where they wanted them. Basically, as slaves! They would sit around all morning in their jamas, ordering cups of coffee, expecting breakfast when they deigned to get up, morning tea, lunch, and so on. No, they didn't want to go out and exercise; no, they weren't interested in showering, or getting dressed...
Back to the Guidelines and the application of more rules. Exactly as the Guidelines suggests. Staff learned to call the tune, put rules in and around everything - if the girls weren't up by a certain time, breakfast would be cleared away; if they didn't walk, swim, exercise, there would be no priviledges. There followed a couple of weeks 'shake-down' period where staff stood their ground, and finally, the girls got used to the idea that routine would be followed and priviledges earned. Things are now going much better as staff have quickly learned to cope with the cleverness of two young women who know their way around. Some staff were worn out quickly, some handled it well. There have been tough times, as well as the funny side of life. Best of all, they are happy and losing weight!
It was a risk, introducing a new service provider to the world of PWS, but one that has been well worth the taking. Having staff interested in the syndrome, willing to be helpful, and willing to be forgiving over minor transgressions (particularly the swearing) has been paramount to this home's success. Things won't always be easy, and the good old learning curve will always be steep, but by following the Best Practice Guidelines right from the start everyone has had a chance work together.
