Prader-Willi Syndrome (PWS)
In June 20, 2018, Community Living of Rhode Island, Inc., “CLRI” opened its first 100% Prader-Willi Syndrome (PWS) Residential, Employment/Vocational and Day Program services in Warwick Rhode Island, for the individuals with Prader-Willi Syndrome “PWS.”
PWS is a genetic disorder caused by a loss of function of specific genes on chromosome 15. Due to the missing (deletion) copy of the genetic material on chromosome 15, individuals with PWS have a genetically based inability to sense satiety, combined with a decreased utilization of calories, resulting in elevated production of fat tissue. Because PWS is a complex multistage genetic disorder that affects multiple systems in the body, it significantly impacts behavior, mental and physical health. Individuals with PWS require cognitive, social, learning, and health support throughout their lives. A failure to experience satiety leads individuals with PWS to continue eating far beyond physiologic or nutritional needs. This overeating combined with elevated fat tissue production leads to rapid and morbid obesity. As the first specialized PWS program in Rhode Island, Community Living of Rhode Island provides food security in the program as food security is currently the best evidence-based practice to keeping individuals with PWS safe in their homes.
Individuals with Prader-Willi Syndrome typically have mild to moderate intellectual impairment and learning disabilities. Behavioral problems are common, including temper outbursts, stubbornness, and compulsive behavior such as skin picking. Sleep abnormalities can also occur. A person with PWS can live a healthy, fulfilling life when they have ongoing, consistent support from people who understand the intricacies of the syndrome.
The primary goal of Community Living of Rhode Island is to provide individuals with PWS with quality support and treatment to meet their needs. Including services and assistance, to lessen the impact of health problems that shorten lives, and common characteristics of the syndrome that impairs community integration and self-sufficiency.
At CLRI specialized PWS Program, we ensure: (1) An environment free of food or food triggers that can help increase the enjoyment of day-to-day life and activities. (2) Work with a doctor/dietician/ Nursing to develop a healthy appetizing menu that meets all individual nutritional needs, including three healthy meals and up to three healthy snacks. (3) Community access/community activities of participants choosing. (4) Teach coping strategies that can help participants manage in situations where their needs are not being met. (5) Having a daily routine that includes meal times, exercise, and activities that will help participants focus their energy and thoughts on things other than food.
The fact that the individuals with Prader-Willi Syndrome often experience difficulties at home or in Residential settings, creates many other challenges, Therefore, Community Living of Rhode Island service provision includes the ability to provide individuals with PWS a safe and stable environment to learn, grow, become stable, and stay healthy. The daily life of participants with Prader-Willi living in CLRI programs involves a structured blend of social, recreational and behavioral support in which staff perform therapeutic support services. Activity schedules include planned leisure and recreation, training in activities of daily living, and an emphasis on developing and enhancing appropriate social and behavioral interactions. Homes are kept to the size of 3 individuals, without overwhelming those who are uncomfortable with large groups. CLRI Residential Programs offer individual bedrooms for all our participants alike.