Guidelines for Residential Caregivers

(by Linda Thornton. For information on training for residential carers, please contact Cindy Adams-Vining: cindy@pws.org.nz )

In looking to support clients with PWS in a residential situation, the provider must be willing to understand a unique syndrome that doesn't fit into many of the usual settings that support other disabilities. Prader-Willi Syndrome is complicated and challenging and can be difficult to understand. It requires patience, skill, caring, and an understanding of the individual as well as the syndrome.

Many countries have different ideas on how best to provide residential care and these range from group home living where several people with PWS live (numbers range from 10 or more in some cases), to smaller residential homes with 5-6 people with PWS, down to one or two, or even one person with 24 hour care. Other homes have a majority of residents with PWS and one or two with other disabilities, and, of course, it may be in the reverse with one person with PWS sharing a home with others of different abilities.

No one system works better than another, simply because it is all dependant on who the person is, what their needs are, how they might wish to live their lives, and how well the support is administered.

Theroretically, there are only two things were needed to make a good residential programme work: Compatible staff; compatible residents.

In New Zealand the first residential home was established for people with PWS in 1992. This was for four young men with PWS and was run by the IHC. It was the first time such a home had been established and it is still going strong today. What has made it successful? Staff who have been trained and who have a good understsanding of PWS and good skills in coping with challenging behaviour; good routines, and a good mix of residents. However, it is not all PW today, but has another young man without PWS, but who is compatible with the other residents.

The second home was opened in South Auckland and was run by Spectrum Care. Again, it started with 4 residents with PWS, but saw changes in its residents with one moving out, and another coming in. This home started with both female and male residents and is still providing service for those with PWS.

Learning: Just because people have the same syndrome and the same needs, they won't necessarily all rub along well together. In hindsight, it seems inevitable that this was bound to happen; after all, it happens in any community when people don't necessarily get along with each other regardless of having several things in common.

MAJOR COMPONENTS FOR SUCCESS

Dietary: There must be sensible, controlled dietary management, planned and formulated with the residents' choices incorporated, and with the understanding that once the planning has been done for the week, there will be no adjustments. Dietary needs will differ from person to person, but if you have residents who need to lose weight, then the diet must be managed for them. (See dietary management section)

Learning: Careful planning, incorporating likes and dislikes, with careful management of measurements, calorie control must be exercised by all staff and understood clearly by all residents. Written menus for all, are an excellent idea, particularly as any changes cannot be disputed. Staff need to be able to eat the same meals as the residents and no extra food for staff to be brought onto the premises. It is a given that this will be discovered by residents and will instigate behavioural difficulties and challenges.

Routine: Routine works well for people with PWS; they like to know what is going to happen next, who is going to be on duty, what is on the menu for dinner, who is coming to visit, and so on. Keeping to the routine may not always be possible, so explaining well in advance that there will be a change, is vital.

Good communication: Good, clear communication and understanding is also vital, both from the point of view of the residents and of the staff. A breakdown in communication will lead to trouble. (See behaviour section)

MODELS OF RESIDENTIAL HOMES

Throughout the world there are different types of residential accommodation for people with PWS. The writer has seen many residential homes in the States and in the UK ranging from 7-8 residents up to 14 or more. One home in the USA was specifically established for two couples (with PWS), each living in their own small 'wing', with the caregivers living in the central part of the house, with doors into either wing. All residents ate in the central (staffed) area and could also socialise there as well.

In Seattle, Washington, a large, purpose-built home also made allowances for a couple with PWS who wished to live together and ultimately, marry. They lived together in the their own ensuite room, while interacting and being part of the other residential lifestyle.

In the UK there are specific residences run for those with PWS, from large, more institutional style homes, to smaller residences in local communities.

In Germany a new, purpose-built residence for 8 people was visited in July 09. Each room was painted in a colour chosen by the person to be living there. Each room had the same basic furniture with plenty of room for personal belongings. Kitchens were accessible, but food-storage areas were locked. Eating together was encouraged, but there were also two more private flats each with its own external access for two more capable and responsible residents to live a little more independently. Each day, residents were taken to work (off-site)

All homes had one thing in common: each person had a purpose-filled day. Activities during the day, whether supported employment or unpaid activities, there was a plan for each person to follow.

Learnings:

  • Residential homes must suit the people living there.
  • Mixed homes cause fewer behavioural problems than same-sex residences
  • Work, or meaningful occupation during the day is essential
  • Routines for each individual should be part of daily plans
  • Keeping to the plan is essential - if there are to be changes, they should be discussed and agreed to by all
  • Smaller residential homes are more manageable than larger ones, although they may not be as economically viable
  • Staff must have specialised training for PWS and must understand the syndrome as well as the person
  • All staff should "sing from the same songsheet" - otherwise one will be played off against another

PURPOSEFUL DAYS

Having a purpseful day is what gets us all up in the morning. Knowing you are contributing to society, to the economy, and are doing something worth-while, gives you a sense of self-worth, independence, and value.

It is the same for everyone. Therefore having a plan for the day is as important to the person with PWS, as it is to the next person.

Whether a person is able to achieve gainful paid employment in a safe environment, or benefits from a daily routine of unpaid work, it is as important as having good, safe, residential care.

LIVING IN THE COMMUNITY

In New Zealand, the case for 'living in the community' is contestable. Although the concept of normal lving is plausible, it often does not work for those with PWS. It is not uncommon for a person to beg food/cigarettes/money from neighbours. Neither is it uncommon for neighbours to be intimidated by these demands, or for theft to occur. None of these things make for easy, comfortable, or safe community living, either for the neighbours or for the person with PWS.

It is not uncommon for the police to be called to the neighbourhood on account of any of the above, and for violent outbursts, breakages, and break-ins.

Whose fault is this? Having PWS means you are driven beyond your own self-control many times a day. Always on the look-out for ways to assist your own survival in a world determined to stop you, means you are driven to deeds which are against the law. In spite of this, the person with PWS may continues to try every possible means to access what they feel they need.

Is this a safe environment? For anyone?

WHAT IS THE ALTERNATIVE?

Community living is important. Isolation is not good for anyone. However, often those with PWS are not able to cope within a normal community and safety for all becomes a priority.

Finding the right community environment becomes paramount.

People with PWS are often extremely caring, nurturing, and mindful of others. They display good nature and friendship to others with different abilities. They are given to caring for those clearly more disabled than themselves.

Would it be possible to find a community where this interaction can take place, where the levels, standards, or expectations of society meet the needs of all its members? Where caring friendships can be forged in the safety of the environment? Where there is enough space to grow vegetables and flowers for all; where purposeful off-site work is offered, supported employment, socialising within this community and in the wider community?

Without returning to the old "institutionalised" living, where residents were told what to do and when; when "one size fits all" was the management principle, there could equally be a safe community where all abilities are catered for, but specific needs for PWS were rigorously met. Small villas or homes within a compound would be ideal.