Providing residential care services to children and adults with Prader-Willi syndrome (PWS) is often very different and challenging for human service professionals. Some of the supports that are often successful for persons with PWS go against what many professionals have learned in school about providing services for the developmentally disabled. Limiting access to food and providing food security is often met with resistance and misunderstanding. Developing behavior support plans for people with challenging behaviors can also be difficult.
In 2008, a group of residential care professionals formed the PWSA l USA Professional Providers Advisory Board to help educate and support residential providers. Over the years, not only did they help to develop care standards for providers in the USA, they also worked with IPWSO to help providers in many other countries around the world.
The Professional Providers Advisory Board meets quarterly. They focus their efforts on providing consultative services to residential care providers who support persons with PWS. The number one issue they assist with is the ability to lock food when the question of violating rights arises. They also assist in developing strategies and plans when a resident is exhibiting challenging behaviors.
A large part of their time and effort involves planning and coordinating the Professional Providers day conference, part of the PWSA l USA convention. Caregivers from across the country come together to learn, share and problem solve. It is a valuable educational experience.
In addition, members of this committee have personally authored or contributed several articles, books and other publications which address the care of persons with PWS in residential care. One of their major contributions has been the compiling and publishing of the book, Best Practice Guidelines for Residential Care, a resource being used by caregivers around the world. These guidelines are currently being updated. Another publication, the 2008 Supporting Adults with Prader-Willi Syndrome in Residential Settings – An Expert’s Recommendations filled a major gap by furnishing providers, caregivers and parents of those with PWS with an extensive manual addressing residential care issues. It continues to be used as part of a specialized training program for PWS. The manual includes management strategies, suggestions for all phases of life in the residence, provider/parent relationships and many more helpful ideas offered by B. J. Goff, Ed.D. Mary K. Ziccardi and B. J. Goff have also contributed chapters to the 3rd and 4th editions (currently underway) of the Management of Prader-Willi Syndrome handbook. In addition, Mary K. and B. J. provide consultative services to educators facing challenges in educating the student with PWS. The following is a list of past and present members of the Professional Providers Advisory Board.
| Name | Affiliation | Years Served |
| Jackie Mallow | Prader-Willi Homes, Oconomowoc, WI
Root Connections Consultative Services LLC |
Member: 2008 – ‘21
Chair: 2008 – ‘11, 2015 Liaison: – 2017 – ‘21 |
| Patrice Carroll | Advocates Inc., Framingham, MA
Latham Centers, Brewster, MA |
Member: 2008 – present
Co-chair: 2012 – ‘14, 2016 – present |
| Mary K. Ziccardi | REM Ohio, Inc. Valley View, OH | Member: 2008 – present
Co-chair: 2016 – present |
| Jeff Covington | Catholic Charities Services, Albany, NY | Member: 2008 – ‘14
Co-chair: 2012 – ‘14 |
| Steve Drago | ARC of Alachua County, Gainesville, FL
Independent Consultant |
Member: 2008 – ‘19 |
| B. J. Goff | Goff Associates Disability Consultants, Springfield, MA
Professor, Westfield University, MA |
Member: 2008 – present |
| Evan Farrar | PWSA l USA Staff
Sarasota, FL |
Member: 2008 – ‘11 |
| David Wyatt | PWSA l USA Staff
Sarasota, FL |
Member: 2008 – ‘13 |
| Jeremy Johnson | PWSA l USA Staff
Sarasota, FL |
Member: 2011 |
| Kate Beaver | PWSA l USA Staff
Sarasota, FL |
Member: 2012 – ‘15 |
| Kim Stevens | Volunteers of America, Tulsa, OK | Member: 2011 – ‘15 |
| Marguerite Rupnow | Prader-Willi Homes, Oconomowoc, WI | Member: 2016 – present
|
| Stacy Ward | PWSA l USA Staff
Sarasota, FL |
Member: 2016 – present |
| Sara Clemson | REM Ohio / The Mentor Network | Member: 2016 – ‘17 |
| Mark Lister | ARC of Alachua County, Gainesville, FL | Member: 2019 – present |
Current Members of PWSA l USA Professional Providers Advisory Board
 |
 |
 |
| Patrice Carroll | Mary K Ziccardi | B. J. Goff |
 |
 |
 |
| Marguerite Rupnow | Mark Lister | Stacy Ward |
Past Members of the PWSA l USA Professional Providers Advisory Board
 |
 |
 |
|
Jackie Mallow |
Steve Drago |
Jeff Covington |
 |
 |
 |
|
Evan Farrar |
David Wyatt |
Kate Beaver |
| Missing Photos: Jeremy Johnson, Kim Stevens, and Sara Clemson | ||
The success of residents in their homes directly impacts the quality of life they will experience. Thanks to these dedicated professionals, residential care providers as well as educators have a valuable resource available to them for consultation and ongoing education.
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.
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.
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.
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.
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.