Contributed by PWSA | USA Alterman Family Support Counselor, Kim Tula, MS, CSW
The Arc of Alachua County, located in Gainesville Florida, currently operates ten group homes that specialize in serving adults with PWS. These group homes are licensed by The Agency for Persons with Disabilities (APD). ADP oversees and funds Home and Community Based Services (HCBS) programs for people with intellectual and/or developmental disabilities in the state of Florida.
Currently, the residents with Prader-Willi syndrome that live at the Arc of Alachua County vary between ages 22 and 60 years old. While there are ten group homes that specialize in PWS, each house is home to four to six individuals. Within the residential program, the level of supervision varies by need of the individuals being served. Most homes have a 1:3 staff to resident ratio, with some individuals being provided a 1:2 or 1:1 staff to resident ratio. The staff to resident ratio at The Arc of Alachua County's day program tends to vary from a 1:10 all the way to 1:1, depending on the need or circumstances.
Often times, PWSA I USA receives calls from parents concerned about their loved one’s higher level of behavioral needs. When Mark Swain, President and CEO of The Arc of Alachua County, was asked if they serve individuals with high behavioral needs he stated, “We absolutely do. Person Centered Planning is essential to getting to the solution of these issues. We need to remember that having PWS can be difficult. People need support to deal with their frustrations and anxiety in life. People with PWS think a lot about the future and what they want from life. We admire that quality. Sometimes people with PWS just need an answer to a question they are pursuing or thinking about. We have to remember to be pragmatic. Sometimes the solution is complex, other times not. Sometimes issues are resolved quickly, other times not. People with PWS often experience a complex life. This fact needs to be respected and we need to find solutions that work for people. It all starts with getting to know people!”
The Arc of Alachua staffs its PWS specific group homes with 24/7 awake staff. The staff members who work overnight perform regular bed checks to ensure people are safe, especially those who are an elopement risk. The group homes also have delayed egress in some homes, which sounds an alarm when a person turns the knob to open the door and delays the egress by 15 seconds. This does not stop someone from exiting, it just slows the exit down allowing staff the opportunity to supervise. This system automatically shuts off if a fire exists.
Food security is always a concern when supporting individuals with PWS, and The Arc of Alachua County works hard to ensure that this concern is addressed. They work hard to ensure individuals are provided with a sense of safety and reassurance. All food is kept securely stored to avoid temptation and to lower the level of uncomfortable perseveration. According to Mark Swain, “We practice food security together because doing things together is preferred over being singled out and treated differently. Meals and activities that involve food are carefully planned so things are predictable, and to avoid setbacks and/or adverse medical consequences." Mark also stated, "We encourage choice among food items so people feel their desire for variety is respected. We set diets very predictably so people can feel successful”.
When asked what proactive measures work best with the individuals at The Arc of Alachua County, Mark highlighted the importance of knowing the person and providing services based on that knowledge, setting up the environment for success, paying attention to what is happening, allowing people to talk, listening, and providing answers. Mark also talked about the importance of letting people contribute and be involved in what is going on, and helping them problem solve when needed. He also stressed the importance of having patience, providing praise and recognition, and treating people well as keys to success when supporting individuals with PWS.
The Arc of Alachua County considers its PWS specific group homes to be somewhat non-conventional in that they are designed to serve the special needs of people with PWS. The homes are tailored to people with PWS; who are often very bright, inquisitive, and active people. People with PWS often require more engagement and more options than other people with I/DD due to their increased interests and strong cognitive abilities. The Arc of Alachua County also supports some individuals in apartment settings and is interested in expanding this service to the PWS population. Mark indicated more work needs to happen to expand apartment living to the PWS population and that the Arc of Alachua County is wanting to collaborate to make this happen.
When asked where Mark sees the future of PWS-specific group homes and support, he stated, “We need to focus on this! The answers will come from people with PWS and their families. People with PWS want what everyone else wants. We need to find ways to help people with PWS exercise increased control and influence over their lives while still safeguarding their well-being. People with PWS are amazing and vibrant people. They have strong attachments to their family and form strong friendships. We should learn from people with PWS everyday”.
If you are interested in specific information about The Arc of Alachua County and the services available, please contact The Arc of Alachua County at 352-334-4060 or www.arcalachua.org.
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This spotlight on The Arc of Alachua County is the third of a residential series PWSA | USA will feature.
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.