Direct Support Professional (DSP) is an umbrella term that includes many different titles and functions; for example: direct care, direct support worker/specialist/assistant/counselor, habilitation specialist, residential counselor, activities of daily living specialist, relief staff, apartment worker, developmental disabilities specialist, job coach, employment specialist, community bridge-builder, paid friend/neighbor, family care provider, family support services aide, community companion, personal assistant, etc. Regardless of what title they have, they are the backbone of paid supports for individuals diagnosed with intellectual/developmental disabilities.
Direct Support Professionals play an important role in encouraging and maintaining the health and wellness of individuals living with PWS, while fostering their personal growth, independence, and development of life skills. They wear many hats in their role including chauffeur, nurse, therapist, personal care aid, confidant and in some cases food security. They help people build relationships and expand their circle of natural support.
Direct support professionals provide care and assistance to individuals and often get to know them as well as family members do. They know when those under their care are excited about something, feel confident, or when they are having a difficult day and are feeling down. Direct support professionals are often the first to recognize when someone is not well, and further assessments are necessary by a health care provider. They then help to share the assessment results in a way that is meaningful and understandable to the individual.
Direct support professionals are responsible for the safety, dignity, and health of the individuals that they support. They must be “on” at all times and have an obligation to discover the aspects of the whole individual that are not documented in their chart. They have an obligation to help individuals discover aspects of themselves that they may not be aware of.
Direct support professionals must be skilled verbal and non-verbal communicators. They communicate with the individuals that they support, family members, co-workers, physicians, and clinicians both verbally and in writing. They model and practice appropriate communication with the individuals that they support.
Direct support professionals empower individuals to make informed decisions and to communicate them respectfully. They encourage individuals to branch out of their comfort zones and to grow while providing support and a safety net. They teach individuals that failure, frustration, and disappointment are part of life and how to learn from these experiences.
COVID-19 has caused a national crisis and as such, is affecting the entire PWS community. The care and support that DSPs provide is more important and challenging than ever right now. When schools and day programs closed, and only essential businesses remained open, most people in residential settings were in their homes 24/7. They were bored, scared, and frustrated. They couldn’t visit their families or have friends and family visit them. In addition to the countless other hats that they wear, DSPs became teachers, therapists, and in some cases barbers. There is a national staff shortage, which means they are working double shifts and don’t necessarily have their typical days off. It’s all worth it to them though, because they love being there for and with those they support.
Direct support professionals are unsung heroes. PWSA | USA thanks and celebrates all the direct support professionals who are making a difference in the lives of individuals with PWS. Happy Direct Support Professional Week to YOU!
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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.