Many of you have called the PWSA | USA office in need of guidance for your child’s IEP, support for behaviors that are out of control, information on a supportive living placement and many other subjects. You’ve no doubt been met with the calm, reassuring and knowledgeable voice of a Crisis Intervention Counselor. Unless you’ve been a part of our organization for many years, you do not have an understanding of how this very important program evolved.
In 2000, Janalee Heinemann was Executive Director and quickly realized the needs for PWS crisis support were more than she could ever meet. At the age of 68, when many would be enjoying retirement after serving 37 years as a hospital chaplain and chaplain instructor, David Wyatt, dear friend of Janalee and Al Heinemann, began to volunteer answering crisis calls for the organization. He brought his years of service as a chaplain as well as a Master’s degree in Counseling to the position. In the fall of 2001, PWS parent Paul Alterman provided a grant that enabled David to receive a small salary. In less than a year, David had already worked with over 1900 families. Over the next 8 years, David answered hundreds of calls a year – everything from school issues, medical crises, behavioral crises, legal charges against the child and/or parent, and placement needs. Fighting his own health crises at the time, he was not deterred. He was often seen with a clipboard in his hospital bed, or in the PWSA | USA office with an IV line in place. David retired in 2008 and passed away in April of 2014.
Families had the following to say about David:
He was a great man and a very great friend to so many in our PWS community. Because of him, the lives of our children with PWS have been improved so much.
His selflessness, love and caring showed in everything he said and did. God blessed us with his soul and I and many others will never forget him.
In March of 2006, due to the overwhelming demand for crisis support services, Kate Beaver (parent of a child with PWS who has a Master’s in Social Work) was hired. Over 1000 calls were handled in 2007 and the figure for 2008 increased by 20%. The services of the Crisis Counselors were filling a large need in the PWS community. Barb Dorn, parent of a young adult with PWS with 25 years of experience as a nurse, was employed from 2006-2007. For the many years that followed, Barb and Kate co-authored numerous booklets, brochures and handouts, as well as updating some of the materials already available. They created the Transition Planning Resource Guide, which was a huge resource for the community when it was published in 2016. It covered topics such as residential living options, personal health education, transitioning from school to work, and much more. Kate did a lot of work in the area of diet and nutrition, educating and counseling families and professionals on these important topics and trying to change cultural norms. Kate served as a counselor until her retirement in 2019.
In the fall of 2007, Evan Farrar was hired full time to take David’s place and to expand the crisis program. He had a Master’s of Divinity degree and completed his Master of Mental Health Counseling degree during his employment with PWSA | USA. During Evan’s tenure, the extensive non-medical crisis intervention section of the website was formed, and the crisis team expanded its services to include earlier intervention by providing more educational materials and webinars on a variety of topics.
Providing resources to schools and special education advocacy were Evan’s main focus. He holds a certificate from the William & Mary Law School of Special Education Advocacy and the Lehigh University Special Education Law Symposium. Evan was responsible for the establishment of the Wyatt Special Education Advocacy Training (WSEAT), which launched the association’s advocacy efforts. Named in honor of David Wyatt, Evan had this to say about his predecessor:
His role was unique at PWSA | USA – along with Janalee – who really built the foundation of our crisis and family support program. Even to this day, his imprint can be seen not only in the services we provide but also – perhaps even more importantly – the way we provide them which reflect his kind, generous, and professional spirit. ~Evan
Evan wore many hats in his 10 years with the association, including serving as interim Executive Director on two occasions. At the end of his tenure, he also spent part of his time advancing the work of the Research Committee. He left in November of 2017 to open a private counseling practice.
Stacy Ward joined the team in August of 2016. She shared Evan’s passion for special education advocacy and holds the same certifications he does. She is also passionate about supporting the parents and care providers of adults with PWS, emphasizing the fact that PWSA | USA provides care and services for the lifetime of the individual with PWS. She currently serves as Director of Family Support and has taken on many administrative duties within the organization including branding, the website, and convention. She enjoys these administrative duties in addition to her role as a counselor and uses all of that experience to help her plot the course of the Family Support program now and in the future. When asked what she is most proud of, she says that when she takes a support call, she approaches it from the perspective of the person with PWS, not the perspective of the family member who is calling. She always wants the individual with the syndrome to be at the forefront. Since her arrival, more residential care provider training is being done in-house, eliminating the need to outsource that service and incur those costs. She created the Managing Behavior video in 2018 and has continued to work on creating and updating the various publications the association offers to families and professionals. Another area she enjoys is public policy advocacy and she is excited to see the organization expand more into that arena.
Kim Tula began her role as a crisis counselor in February of 2019 after Kate Beaver retired and continues in that role today alongside Stacy. Kim holds a Master’s degree in Human Services with a specialization in Multidisciplinary Human Services, as well as a Bachelor’s degree in Psychology and Sociology. She is a Certified Social Worker. She began her career in a residential care setting in 1990 with the Prader-Willi Homes of Oconomowoc, holding various positions within the organization. She has been involved with the Youth and Adult Program (YAP) at the national conventions since 2011, serving as a behavior specialist and then program planner as well. She brings more than 30 years of experience working with individuals with PWS to the position and handles the majority of the support calls. A special interest Kim has is the grief counseling program and she has received training and certification in that as well. In the early days of the association, grief counseling was provided to parents of individuals with PWS as they often outlived their children. Today, that has changed and many individuals with PWS are receiving grief counseling when their parents die.
Beginning in 2002, and continuing to the present, the Willet family, in honor of their nephew Brian Schertz, has provided a yearly grant that is for legal and educational crises. This grant was used to fund the WSEAT, cover the costs for various publications and enable the crisis intervention program to address the needs of many other families. PWSA | USA is very appreciative of the Willet family’s generosity. Funding from the Alterman family has continued since 2001, even after Paul Alterman’s death. Many thanks to the Altermans for their support and generosity.
In the more than 20 years since its inception, it is not an exaggeration to say that tens of thousands of people have been helped, often in life-saving ways, by these professionals. Here are some quotes from the recipients of that assistance:
In 1993, my 13-year-old had no official diagnosis. PWSA was the ONLY source of information. They saved my child and my family by going above and beyond to educate and help us. Forever indebted.
When PWSA came into our lives, we were truly in the darkest and loneliest place we have ever been. This organization, and all of its wonderful people, wrapped their arms around us with love and gave us hope for our future.
I am so appreciative for the expertise and dedication of the team that comprises PWSA | USA’s Family Support. Whenever our family is struggling to problem solve through a difficult situation, whether it be related to behavior, education, or community/state supports, Stacy is our “go to” for consultation. I inevitably come away with suggestions and strategies that help us move forward in a productive manner.
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.