The importance of planned, purposeful days
Adults with Prader-Willi syndrome (PWS) need to be occupied to direct their focus from the desire to consume food or beverages. People with PWS can be as much a part of a purposeful, achieving society as anyone else, provided their environment meets their needs. They can be committed and attentive workers who become proud of their achievements and their role in a workplace setting. A large majority of people with PWS are capable of working in a supported, appropriate environment. This can include areas of employment that are not specifically for people with intellectual disabilities. With the right type and level of support, people with PWS can work successfully in “mainstream” areas of employment and volunteer employment positions. Employment can provide consistent hours of work, regular days of work, purposeful activity and responsibility that can contribute to the workplace goals.
Too often, people with PWS are automatically directed to attend “day programmes”, once they finish school, when they are more than capable of being employed. Some day programmes provide constructive activities for their clients, especially those that are focused on individual, one-on-one support. Many day programmes, however, involve cooking, visiting shopping centres, travel-training and money management and extra and inappropriate food consumption. Food access is difficult to manage for the staff of such programmes, which are not PWS-specific. The environment often encourages food seeking, heightened anxiety and resultant disruptive behaviour in people with PWS.
Many adults with PWS express the desire to work in mainstream industries with no specific support for people with disabilities. This can work well, provided the environment is appropriate and individual support is given to the person with PWS, while they settle into the workplace and learn the routine of the work and what is expected from them. Some people may require ongoing individual support (depending on the work environment), while others may eventually manage well with the general supervision of a workplace.
Unfortunately people with PWS often desire to work within a food-related industry. Despite their possible ability to complete the work, the constant stimulus from the food surrounding them can cause much stress and anxiety for the person with PWS. This will not be expressed by them in words, but will eventually become evident through their increased anxiety and related behaviour. The less structured the environment and the greater the number of executive functioning skills that are expected from someone with PWS, the greater becomes their anxiety, confusion, frustration, feeling of being overwhelmed and eventually, deteriorating behaviour.
When a person with PWS presents as high functioning, with a very mild intellectual disability, parents, families and employers expect a higher level of ability. The cognitive characteristics seen in most people with PWS place limitations on their ability to succeed, if not given high support. This needs to be remembered, so the person is not put in a situation where they are expected to perform at a level beyond their capacity. No matter what environment someone with PWS is working within, they require specific higher levels of support and a planned schedule.
Work places may need to alter the environment to suit the needs of a person with PWS. This generally involves providing lockers for all employees and staff, keeping food inaccessible until the meal breaks occur and preventing all employees from “sharing” their food. Having all food out of sight as well as inaccessible contributes to true “food security” of mind as well as physical access.
Employee awards and encouragement certificates nurture the desire for all people with disabilities, especially those with PWS, to please and do well. Simplified task training is essential and is best achieved when information about PWS is provided to the employer, prior to your person with PWS commencing at the workplace.
Whether your adult living with PWS attends a day programme or a workplace, does the service provider or employer provide adequate supervision around food, to assist with weight management and food-related anxiety? Have you ever been told that your person with PWS is not able to attend a day service, respite service or work program due to difficult behaviour? Service providers and employers need to be informed about the special needs of people with PWS, how they think and process information, as well as their specific need for food security.
A parent writes:
David has moved through quite a few workplaces, all places catering for people with ‘special needs’. All workplaces prior to his present one ended in upset. Fortunately, about ten years ago, we accessed one where the underlying ethos is that the staff there want the workplace to be a suitable place for a range of people. With communication between the Manager there and David’s residence coordinator, David has always been treated with respect, encouragement and a commitment to solving ANY problem arising. He is the only person with PWS there, included in a range of people with special intellectual or physical needs.
He works three days per week, from 9am to 3pm. He is driven to and from the workplace by one of his residence staff. The residence staff don’t go into the workplace with him. He has his own locker for his bag with lunch, and all lockers of other employees are locked, also. Sometimes a staff member works beside David, but not always. They celebrate people’s birthdays as they occur, in a restrained way, and celebrate Christmas with their own Choir of which David is a member. He loves being part of this workplace. How fortunate we are!
People with PWS think differently!
They need to be spoken to gently, but with confidence, using fewer, simple words and directions. They respond poorly to raised voices, fast speech or long conversations and directions. Requesting their assistance and giving them “responsibility” will appeal to their desire to please, and help develop self confidence. They learn best with the use of visual explanations in either pictures or words. Not all people with PWS read well, so pictures describing a process are great to have in the workplace.
Remember, people with PWS are concrete thinkers. Promises or suggestions that can be perceived as promises, must be doable and realistic with no room for “underlying messages” or insinuation. People with PWS are anxious and sensitive and can easily misunderstand or misconstrue complicated conversation. People working with them need to mean everything they say!
Humour and joking must be kept in simple terms until the person with PWS becomes more acquainted with others in the workplace. It is essential for them to know who is the “boss” and from whom they must take instruction, as well as to whom they can direct questions and concerns. Knowing who is in charge at each work shift is also important for them to feel secure and understand structure within the workplace.
Explain to others that people with PWS get stuck when trying to complete multi-stepped tasks. This is why they appear to be slow, confused or stubborn, when asked to hurry to complete an activity/action.
Helping others understand what PWS is all about will assist them to work appropriately with your person with PWS, who will then eventually respond well and become more accepted by their community within which they can become an effective participant.
The more a person with PWS is occupied, the less time they have to focus on food!
This article was written by IPWSO’s Famcare Board.
Published September 2021
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
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