PWSA Blog

Pioneers Devoted to Educating and Supporting Residential Care and Education Professionals

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.

 

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