Mainstay Life Services is a provider in Pittsburg, PA that supports individuals with Prader-Willi syndrome (PWS). Currently, Mainstay Life Services has eight group homes and will be opening another home in the near future. All of the homes are licensed under 6400 regulations through the state of PA.
According to Jen Dayton, Associate Director of Prader-Willi Syndrome Supports, the group homes are set up to provide support to up to two individuals with 1:1 or 1:2 staff support. The current age range of individuals living in the PWS group homes is between 23 years old and 60 years old. However, Mainstay Life Services also supports people through the Community Services Department, behavioral supports, and employment supports, with the youngest individual being 13 years old.
One of the challenges some families face is finding an appropriate PWS specific placement for individuals with higher behavioral needs. Mainstay Life Services supports individuals with a variety of behavioral challenges, including individuals who need 1:1 staff support. According to Jen, they typically see a drastic improvement in behavior and lessening of anxiety after the first year of being in a structured food secure environment. The group homes each have 24/7 awake supervision with locked kitchens for food security. To help further reduce anxiety related to meal prep, the overnight staff is responsible for prepping the meals, which are based on specific menus with caloric limitations outlined by the individuals primary care physician.
When asked what proactive measures work best with these individuals supported by Mainstay Life Services, Jen highlighted how they ask for input from each supported person on their interests and help build a structured routine to help ensure the individuals are kept busy and motivated.
"Structure with input from the individuals being served is what we have really seen work. Using conversations to remind individuals that we are supporting decisions they have made when they were not upset or anxious helps to empower them to guide their everyday life,” said Jen.
Mainstay Life Services also incorporates exercise into each day and minimizes activities that involve food. Jen also stated, “We encourage people to advocate for themselves and mentor new people on what has worked for them.” Mainstay also provided staff training which focuses strongly on positive behavior support and teaching staff to stick to a structured routine to help lessen anxiety. “Mainstay believes in the principles of staff effectiveness and positive approaches,” said Jen.
Mainstay continues to explore options for non-conventional homes as they continue to get referrals for individuals in need of placement. Mainstay is looking at apartments and life-sharing possibilities with meal delivery, minimizing the kitchen in each home.
When asked, “Where do you see the future of PWS-specific group homes and support," Jen stated, “There will always need to be specific training around PWS and food security. Staff who are knowledgeable and supportive of the syndrome are always the key to success. As people transition, I see the possibility of apartments or duplexes where there is limited access to the kitchen because food is delivered to them. People are able to feel part of their community while still being involved with others diagnosed with PWS who can understand where they are coming from.”
If you would like further information about Mainstay Life Services or to inquire about possible admission to their program, please contact Jen Dayton at jdayton@MainStayLifeServices.org.
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Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.