When you think about why you do your job, what comes to mind? Maybe you always dreamed of your career from when you were a little kid, or perhaps you developed a passion for a trade and worked at it, made it your life’s work. Or possibly you’re still searching for the thing that will fulfill you. Sometimes, like in Kathy Brown’s case, our work finds us.
Brown smiles as she reflects on the start of the career. Apparently, she surprised herself by getting married—something she swore she’d never do—and then again by having two sons—something else she said she’d never do! Everything changed for Brown when her oldest son Kyle got into an accident and endured a severe traumatic brain injury. He spent a year and a half in rehab, regaining skills he had learned once as a very small child. There is intensity in Brown when she talks, especially when she recalls reentering the field of developmental services in 1996. Brown left mental health in 1981 and worked as a program manager at what is now Mylan for 23 years. But her son’s journey lit a fire in her, she says, and that’s when she applied at NCSS. Over the last ten years, she’s worn a number of hats at the agency: she started working on the employment team, then oversaw the behavioral team; she then became interim director, got her master’s in rehabilitative counseling, and in 2014, Brown found herself in the director’s chair where she currently sits. This is quite a seat to settle into, as there are over 250 clients receiving services, 157 staff working in the division, and 110 contracts with shared living providers. Brown certainly doesn’t do it alone; she has help from many people, like her leadership team: Amy Bronson, Assistant Director; Emily Norris, Assistant Director; and Amber Schaeffler.
Schaeffler, a licensed clinical social worker in the DS division, was on the NCSS Here for You television show and also presented at the last Grand Rounds seminar along with Brown. She coordinates the Clinical Oversight Committee and the Internal Behavior Support Review. Schaeffler is also getting certified in biofeedback and neurofeedback, both alternative forms of therapy that are quite effective with those with developmental disabilities. Biofeedback refers to the clinical applications where physiological signals from the body are used for auditory or visual feedback. When given this feedback during a therapy or training session, an individual can learn how to alter their breathing or behavior. Biofeedback provides a visual representation of a client’s stress, thereby giving them the tools to learn about their body and shift behavior—even slightly—to work toward a goal. A client’s ideal BPM (breaths per minute) will provide the most restorative functions for the body; this information can be gathered from biofeedback. With biofeedback, an individual’s tension is visually displayed on a screen, providing a powerful tool for recognizing stress within the body. The visual graphs allow individuals to see the control they have over their own Autonomic Nervous System and that can be very powerful in healing. This form of therapy is especially beneficial for those who may not find success with traditional talk therapy.
This is just one of the many programs available within the DS division.* Maybe you’re wondering what makes someone eligible for DS services. There are several criteria: an individual must have an IQ of 70 or less and have significant adaptive behavior challenges in at least two areas of daily living—in other words, everyday social and practical skills. The Intellectual Disability must have originated before the age of 18. This last criterion can prove tricky for staff in the DS division, especially if an individual who has never sought services before attempts to access DS services as an adult. Before services can be provided, staff must sift through years of documentation to find evidence of the disability prior to the age of 18; this might mean contacting previous school placements or family members conducting intensive interviews to establish functioning as a child. It can be challenging for our Intake Coordinator Samantha Burnell to locate, engage, and scour through information to uncover this proof; staff wants to deliver services in the most meaningful way and when they are needed.
Talking to Brown and Schaeffler, it’s easy to see how they landed where they are. Schaeffler is approachable, unassuming, and gentle; she sits with her hands folded in her lap and smiles as she answers questions. Brown is soft spoken but pointed in her speech, and it’s evident that she’s passionate about her work. She knows what she’s fighting for every day. The most common misperception of those with intellectual disabilities, Brown says, is that they are not intelligent or capable of living a life like everyone else in their communities. “They are extremely capable of that,” Brown says. “They should have the same rights as all of us.” Brown says that the laws have heightened awareness and given advocates some teeth, but there is still a lot of stigma. Anyone doing this work day in and day out is doing it because they care about crushing the stigma that follows individuals with disabilities. They care about every individual being able to fulfill their goals.
Some of that stigma is in the way we talk. Putting the disability before the individual can perpetuate stigma, and you might be surprised by how commonplace this language is. How often have you heard the following phrases? “She’s autistic.” “He’s learning disabled.” “They’re in special education.” This kind of language defines the individual as their disability, rather than a person who has a disability. “She has autism.” “He has a learning disability.” “They receive special education services.” Think about it: Would any of us want to be defined by just one thing?
*There are many services and programs available within the DS division of NCSS. You can read more about these services on our website by clicking on the “Developmental Services” tab at the top of page or by clicking on this link: http://www.ncssinc.org/developmental-services