OUR CONFERENCE PRESENTERS

A Year of Change:
Diane Jones-Ritter, Commissioner, Office of Mental Retardation & Developmental Disabilities (OMRDD)
OMRDD's Mission is to coordinate and provide services for people with developmental disabilities and their families and to conduct research into the causes and prevention of developmental disabilities.

Chiropractic and the Patient with Prader-Willi Syndrome:
Jamie H. Bassel, DC: Dr. Bassel is a Board Certified Chiropractor practicing in Manhattan. He is the proud father of Zakary, who has PWS. Dr.Bassel is a member of the American Chiropractic Association, the American Academy of Hospital Chiropractors, a Board Member of PWSA (USA) and a Director of PWANY.

Behavioral Management- Tips and Tricks:
Patrice Carroll, Director of Prader-Willi Syndrome Services at Advocates, Inc. MA
This session will focus on the most common behaviors seen in the person with PWS. Topics will include: Skin picking, Aggression, Obsessive thinking, Compulsive behaviors including hoarding, Manipulation, Elopement. Patrice Carroll has been working with people with PWS for over 20 years and currently serves over 30 people with PWS both residentially and in day programming.

Keynote Speaker: John Porcella, PhD, Executive Director, Community Living Corporation, (CLC):
He has operated a residential program for people with Prader-Willi Syndrome since 1991. He has more than 25 continuous years of experience with PWS and was responsible, in 1980, for developing the first residential school program in New York for children with PWS.

Completing the Circle of Support: Empowering and Bolstering Direct Support Professionals Working With Individuals with PWS.
Jeff Covington, Director, Residential Services, CCDS

The Historical Perspective on Growth Hormone:
Janalee Heinemann, MSW - PWSA(USA): Ms. Heinemann is the Director of Research and Medical Affairs PWSA (USA), and Past President PWSA (USA). Janalee is the parent of an adult son with PWS. She received a Masters in Social Work from Washington University in St Louis, MO. Her professional experience includes positions as Oncology Pediatric Medical Social Worker at St Louis Children's Hospital (10) yrs, Hospice Social Worker-3 yrs, Child Abuse & Neglect Social Worker (6) yrs.

Dr. B J Goff, Ed. D
Associate Professor of Education at Westfield College, MA who also has first-hand experience opening and operating PWS group homes. She also serves as an educational crisis consultant for PWSA (USA).

The Growing Strength of the PWS Network:
Craig Polhemus, Executive Director, PWSA (USA) Craig is finishing up his first year as Executive Director of PWSA (USA), he has worked as an Economist at the U.S. Bureau of Labor Statistics; Staff Director and Counsel of the U.S. Senate Subcommittee on Alcoholism and Drug Abuse; Counsel, Deputy Director, and CFO of the New York State Office for the Aging and Editor or Publisher of a dozen professional journals of law, accounting, and social science.

Making Sense of Sensory Processing:
Janice M. Agarwal, Certified Pediatric Physical Therapist: Ms. Agarwal has lectured on infant development and training techniques for the hypotonic child. She has Sensory Integration training and is certified to teach the Alert Program on self-regulation. She was part of the Neurodevelopment Evaluation team in Boston and the Early Intervention teams in NY. She has a young son with PWS.

Understanding the PWS Student:
Mary K Ziccardi, DS QMRP: Ms. Ziccardi has worked to develop and implement programs for both the PWS students and PWS adults seeking residential placement for more than a decade. She is currently a member of the PWSA (USA) Board of Directors since 2001.

Intensive In-home Case Management, Advocacy, Counseling and Groups for Children with PWS, their Parents & Families:
Anne McManus, M.A, L.C.S.W. Executive Director, Latham Centers, MA. She has been involved in human services the past years, both as a therapist and administrator. She has a Master of Arts Degree in Clinical Psychology and is a licensed certified social worker in MA.
Michael Marchese, M.A, L.M.H.C. Director of Adult Services; Latham Centers, MA. He has worked in the human services field for more than 20 years. He has a Master of Arts Degree in Counseling, Psychology and is a licensed Mental Health Counselor

The CCDS/ Alliance FSS Grant; a Report:
Moderator: Henry Singer, PWANY, Vice Pres. Panel: Anne Ogden, Assoc. Executive Director, CCDS, Linda LeTendre, Past Grant Coordinator; Nina Roberto Current Grant Coordinator
A report on goals achieved and those planned for the future.

Are We Any Closer to Understanding How the PWS Brain Works?
Jenifer Zarcone, PhD, Associate Professor of Pediatrics at the University of Rochester Medical Center:
Data will be presented from a series of studies conducted by a collaborative research group at the University of Rochester, Vanderbilt University, and the University of Kansas. The studies involve using neuroimaging (FMRI) to determine how the brain responds to food both when an individual is hungry and when they are full. FMRI data was collected from typically developing children, adults, individuals with obesity, and individuals with PWS for this study.

Meaningful Day Activity Options for Individuals with PWS:
The unique and individualized things people with PWS are doing in day programs. The panel will speak about some of the disadvantages of OMRDD funded day services available to people with PWS and what practices work best in helping individuals ascertain purposeful day activities. Panel Discussion:
Jeff Covington, Moderator, Catholic Charities, (CCDS) is the Director of Residential Services for Catholic Charities Disabilities Services. He is a member of the six person PWSAUSA Provider Advisory Board. Jeff has worked with individuals with PWS for over 10 years and in the field of developmental disabilities for 15 years.
Robin Stone, Compliance Administrator, Family Residences and Essential Enterprises, (FREE)
Susan Sorrentino, Program Director, Family Residences and Essential Enterprises, (FREE)
Janet Murphy, Treatment Team Leader; Taconic, DDSO

Health Supervision Guidelines for Children with PWS:
Shawn McCandless, MD: Dr. McCandless earned his M.D. at Temple University. He is now a member of the Genetics faculty at Case and part of the Center for Human Genetics and the Center for Inherited Disorders of Energy Metabolism. Dr. McCandless is interested in the treatment of genetic disorders, focusing his research primarily on management of inborn errors of metabolism and Prader-Willi syndrome.

Wow, You Still Work Here! Strategies for Staff Retention in a Group Home Setting:
Dave Sheaffer, Community Services Group

Gary Siegel, Executive Director Catholic Charities; has been in the field of Developmental Disabilities for more than thirty years.

Navigating the World of Preschool Special Education:
Amy McDougall, M.S. is the mother of-year-old, who has PWS, and serves as a Director of PWANY. She received her Masters degree in school psychology from SUNY Oswego in 2001 and currently employed by preschool agency.
This presentation is designed to help you map out your plan for working with the Committee On Preschool Special Education (CPSE). Topics will include: transitioning from Early Intervention, evaluating available services/ programming, evaluations, the creation of the IEP, and advocating for your child.

Positive Behavior Interventions and Supports (PBIS), Functional Behavior Assessments (FBA) & How It Relates To Prader-Willi syndrome:
Maureen Tracey, BA Human Development, PBIS Facilitator, Parent of a child with PWS.
This presentation will help participants understand the functions of behavior and how PBIS can help to decrease and/or extinguish problematic behaviors. Such as aggression, running away, crying, sleeping shut downs etc. Data will be provided to illustrate the effectives of PBIS. Participants will be able to use their own prior knowledge to apply the strategies taught and will become familiar with a pro-active, appropriate behavior intervention plan.

PWS Group Home Selection Guidelines:
Panel;
Mary K Ziccardi, DS QMRP, (See above for details)
Terry O'Neill, MSW, Mr. O'Neill pioneered a $30 million residential program under the Archdiocese of New York. He developed 28 residential facilities for developmentally disabled people over a 30-year period. Seven years ago he established Services for the Developmentally Challenged (SDC) which has been approved to develop a residence for five individuals with PWS.
Jeff Covington, CCDS, Director of Residential Services

Guardianship; What You Must Know: Edward V. Wilcenski, Esq.
Mr. Wilcenski is a co-owner and co-manager of the law firm of Jones & Wilcenski PLLC in Clifton Park, New York, midway between Albany and Saratoga Springs. He practices in the areas of Special Needs Estate Planning, Elder Law and Trust and Estate Administration. He is a graduate of Albany Law School, and received his Bachelor of Science in economics, magna cum laude, from Siena College in Loudonville, New York. He is "AV" rated by Martindale-Hubbell, the highest rating for expertise and ethics given by the independent rating service of the legal profession.

Disabled and Alone/Life Services for the Handicapped, Inc. Lee Alan Ackerman, Executive Director
Who will look after your disabled family member, providing them with the advocacy and support they need, when you're gone?


 

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