Professional Providers Conference – October 24th
Educational, Social Services, and Residential professional providers come together to discuss identified and supported best practice and standard of care approaches, as well as to provide a critical in-person, solution-orientated exchange of ideas for specific concerns that can be addressed by experts in the field.
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Patrice Carroll, LCSW – Professional Provider Conference Co-Chair
Professional Provider Advisory Board Co-Chair
Patrice Carroll, LCSW, is the director of PWS services for both children and adults at Latham Centers in Massachusetts, USA. Patrice received her MSW from Simmons College, Boston, MA, in 2008. Patrice is the co-chair of the PWSA (USA) Professional Providers Board as well as the United States delegate for the International Prader Willi Syndrome Organisation (IPWSO) and has over 18 years of experience working with children and adults diagnosed with PWS. Patrice is a co-author of the book Living Healthy with Prader-Willi Syndrome. In addition to her experience with developing person-centered vocational programming for people with PWS, she has specialized in the multi-modal management of skin and rectal picking using intensive, non-contingent, sensory stimulation.
Mary K. Ziccardi – Professional Provider Conference Co-Chair
Professional Provider Advisory Board Co-Chair
Mary K. Ziccardi has worked providing services and supports to people with developmental disabilities for over three decades. She is currently employed as the Regional Director at REM Ohio, a partner of The MENTOR Network, overseeing programming in sixteen counties in northern Ohio. Ms. Ziccardi is the Co-chair of PWSA (USA)’s Professional Providers Advisory Board (PPAB) as well as Co-chair of the 2019 Provider’s Day. Along with the PWSA (USA) provider, special education advocacy and family resource activities, Mary K. has remained active with the international provider community, co-chairing IPWSO’s Professional Provider Caregiver Board.
Lee Chamberlain, LCSW
Lee Chamberlain is the Vice President of Operations and Chief Operating Officer for Latham. She is responsible for all clinical, administrative, and fiscal aspects of Latham’s programs. Lee holds a Master’s Degree and is licensed as a LCSW. She has been in leadership positions within human services for over twenty years in organizations providing behavioral health services, education, residential services, and vocational services to the ID/DD population.
Barbara J. (BJ) Goff, Ed.D.
Barbara J. (BJ) Goff, Ed.D., is a Professor of Special Education at Westfield State University in Massachusetts. She has 40 years of experience working with individuals with Intellectual or Developmental Disabilities (IDD) in a variety of settings, with 30 years devoted to individuals with Prader-Willi syndrome. She provides training and consultant services to schools and adult service providers throughout the US and is a frequent presenter at state, national, and international conferences. She is the author of Supporting Adults with Prader-Willi Syndrome in Residential Settings, co-author of The Student with Prader-Willi Syndrome: Information for Educators, authored twochapters on educational issues and co-authored a chapter on sexuality in the third editionofManagement of Prader-Willi Syndrome. She is a contributor to the international Best Practice Guidelines for Standard of Care in PWS in the areas of teacher training and parent/caretaker relationships. BJ serves on the PWSA (USA) Professional Providers Advisory Board as well as the PWSA (USA) Special Education Advisory Board. PWSA (USA) also utilizes BJ as an education crisis consultant and a trainer and consultant for adults, their service providers, and their families. BJ serves as the educational advisor for the International PWS Organisation (IPWSO).
Mark Lister, B.S., BCaBA
Mark Lister has 30 years of experience working with individuals with Prader-Willi syndrome (PWS), designing and managing both residential and behavior management programs. Mr. Lister was one of the founders of the Arc of Alachua County’s PWS residential program. Currently the Arc is serving 65 individuals with PWS and is the only program using the principles of applied behavior analysis to ameliorate problem behavior and teach life skills necessary to live successfully with PWS. Mr. Lister is also interested in the medical management of individuals with PWS and has had the privilege of working closely with Drs. Daniel Driscoll and Jennifer Miller, who provide medical care to the majority of people in the Arc PWS program. This combination of world-class medical care and effective behavior management differentiates the Arc from other PWS programs. When Mr. Lister first started working with individuals with PWS, people were just beginning to be diagnosed, usually well into adulthood. At that time there was no model as to how to best serve and support these individuals. Since that time, tremendous strides have been made in the medical and environmental supports for people with PWS. The young adults that we are now serving have vastly improved life outcomes as a result of early diagnosis, advanced medical care, and improved school and adult programs. That said, there is still more work to be done, and Mr. Lister is looking forward to working with the PWS medical and service providers to continuously improve the services available to people with PWS and their families.
Retired Sergeant Tammie Penta worked for the Tucson Police Department where she was a police officer for over 27 years, with the last 20 as a sergeant. Tammie was a detective sergeant for the Elder Abuse Task Force, which included investigations of vulnerable adults, the Child Abuse/Homicide Unit, Special Investigations and Aggravated Assault Unit. Additionally, she was the training supervisor responsible for new officers coming into law enforcement and completed her career as the administrative supervisor for the largest division in the city.
Sgt. Penta worked for many years as one of the instructors for the Crisis Intervention Training of officers in Southern Arizona. This training gave officers the tools needed to interact with our developmentally disabled population and also introduced them to Prader-Willi syndrome.
Over the last 20 years, Tammie has provided training to state group homes and families as it relates to law enforcement interaction as well as advocating for families who have had law enforcement involvement in the schools or where arrests have been made of PWS Staff or people with PWS.
Sgt. Penta has been on the Prader-Willi Syndrome Arizona Association board since 1996 and has been on the PWSA (USA) Board since 2014. She is the proud mother of Victor who is 25 with PWS.
Elizabeth Roof, M.A., Research Associate, Vanderbilt University Department of Psychiatry
Elizabeth Roof, M.A., has been licensed as a Health Service Provider in TN since 1994. She currently directs several research programs with children and adults with Prader-Willi syndrome with Elisabeth Dykens. They have published many peer reviewed journal articles about many aspects of PWS across lifespan. For almost 25 years, Elizabeth has followed longitudinally over 350 children, teens and adults with PWS in research studies. Elizabeth has recruited many families across the country and Canada by providing individualized feedback information to families on issues such as behavioral and classroom intervention, effective parenting, IEPs and educational strategies, psychiatric medication in PWS, and residential placement and professional consultation for professionals and groups. She has helped manage many clinical trials in PWS and consults with sponsors to select appropriate outcomes and logistics for clinical trials in PWS. She has consulted with Latham Centers since 2015. Elizabeth has presented at many state, national, and international PWS conferences, and for FPWR in the U.S., Australia, and Canada.
Marguerite Rupnow has been working with children and adults with Prader-Willi syndrome since 1987 and solely once she became the Director of Operations for Prader-Willi Homes of Oconomowoc in 2002. In March 2018 she became the National Director of Admissions and Advocacy for Prader-Willi Homes of Oconomowoc. Marguerite has been actively involved in PWSA (USA) and IPWSO conferences by presenting numerous seminars to other caregivers. In 2009 she had the distinct privilege to participate in the 1stInternational Caregiver’s Conference in Herne, Germany, which was focused on developing the book the “Best Practices in Standard of Care in PWS”. Marguerite was the program leader for the PWSA (USA) Convention YAP program from 2009-2015.
Marguerite has over 33 years of leadership experience and has been involved in the development of program, group home, management, and employee trainings. In 2015, she was elected to the Board of Directors of PWSA (USA). She is the Past President of Respite Care Association of Wisconsin and is on the Project Search Steering Committee for the Watertown Regional Medical Center/Watertown High School. In her free time, she is also an adjunct professor at Wisconsin Lutheran College, teaching Business Ethics and Leadership Capstone courses.
“After so many years in the field, I am always amazed at the capacity of our people to overcome an obstacle, have a view on life that is admirable and demonstrates to me how insignificant my current challenges are and to see the sunshine in the small things.”
Marguerite holds a Master of Business Administration degree with concentration in Health Care Administration/Management from Concordia University of Wisconsin. She lives in Watertown, WI with her husband John, and two sons Jabin and Jonah. Marguerite enjoys crafting, gardening, and traveling.