Prader-Willi Syndrome Supports
Mainstay Life Services specializes in providing residential services and supports to people diagnosed with Prader-Willi Syndrome (PWS). PWS is a complex genetic condition characterized by an insatiable appetite, weak muscle tone, behavioral health issues and mild to moderate intellectual impairment.
For More Information
To learn more about our Prader-Willi services, check out our program brochure or contact Ned Ochester, Director of Program Operations, at nochester@mainstaylifeservices.org or 412-344-3640.
Meet April
For April, the unique needs that are a part of dealing with Prader-Willi Syndrome are best understood by the other women who live with her in a Mainstay home and her dedicated staff. Prader-Willi results from a chromosomal issue that causes an insatiable hunger and aberrant behavior requiring constant supervision and ongoing lifelong interventions.
Her roommates and the staff at Mainstay helped April adjust to her move here from Philadelphia in 2008. Today, April attends a day program, enjoys doing household chores, and learning new things. She has made friends by joining a bowling league, a theater group, and going to various dances and other social activities.
April’s witty sense of humor and charming personality, coupled with the structure of her Mainstay home, have helped her adjust and enjoy an extended family that cares for her each and every day.
Personalized Treatment
Mainstay’s mission is to provide each person with the specialized supports he or she needs to achieve maximum independence within a safe, supportive and therapeutic environment.
Working with thought leaders and researchers in PWS, we develop individual menus and provide careful meal planning as well as 24-hour care to support these men and women as they learn to manage their lifelong needs and enjoy independent, full lives in the community.
Our multi-disciplinary team approach provides a therapeutic environment that is conducive to the needs of those diagnosed with PWS. Our focus is on developing quality homes and individual programs that enhance each person’s potential.
This includes the development of independent living skills, a positive self-image, and successful behavior and weight management.
Individual service plans allow our team to identify each person’s strengths and growth opportunities through past history, data collection, program evaluation, and the medical and psychiatric oversight necessary in maintaining optimal health. The continuity of our services sets us apart from other providers as it allows those in our care to have the necessary and specialized intensive structure and supports following them throughout their day.
Community Environment
Our homes are nestled into the community and are well maintained by our direct care staff, the maintenance department and those who reside with us. Our goal is to blend into these very established neighborhoods and become active members of the community.
Our homes are located in communities throughout the Pittsburgh area. Each home provides a comfortable living environment designed specifically to meet the needs of those in our care. We also modify the homes as necessary to accommodate changing needs and to ensure those we support are happy and motivated to strive toward and achieve their full potential.
We know that each person we support needs to feel comfortable in his or her new home for it to be effective. As such, we encourage everyone to personalize their own room – creating a sense of comfort, identity and individual pride in their new home.
You are invited to take a tour of our family of homes to find out what makes Mainstay different from other service providers.
A Typical Day in the Life of a Mainstay Resident
What is surprising to many is that the lives of the people we support are not much different from your own. They wake up in the morning, bathe, dress and head off to work or somewhere else just like you. In the evenings, they relax, assist with household responsibilities, get together with friends or explore personal interests.
The biggest difference is the close monitoring of food and the ability of our staff to provide around-the-clock supports for each person. Mainstay offers an array of specialized programs and services to help achieve this goal through:
- Food Secure Environment
- Behavior Management
- Individual Service/Treatment Plans
- Psychiatrist & Psychological Consultation
- Registered Dietician
- Community/Social Integration Opportunities
- Special Olympic Participation
- Family Contact & Involvement
- 24-Hour Awake Supervision
- House Motivational Systems & Therapeutic Approach Plans
- Independent Living/Social Skills Training-ADLs
- Health Monitoring & Assistance
- Exercise Programs & Dietary Plans
- In-Home Gym
- Leisure Time Activities
- Access to Vocational/Day/Educational Services
Exciting Activities
We feel activities are a crucial element in building an enjoyable life, as well as teaching those in our care how to effectively handle everyday situations. From celebrating birthdays and holidays to enjoying a night out with friends or cheering on the home team, activities are planned throughout the year with input from those we serve.
Creative and therapeutic activity planning allows the people we support the opportunity to participate in outings with the understanding of specialized supports necessary in fostering success. Supervised daily and weekly activities, day outings, annual excursions and holiday celebrations help each person to adopt a healthy, active and full lifestyle.