Over the past fifty years, Leone Murphy has profoundly shaped the care and support landscape for individuals with intellectual and developmental disabilities (IDD). Through unwavering dedication and innovative approaches, Murphy has improved countless lives and set a high standard for service and advocacy in the field.
Murphy's journey began in an era when individuals with Down Syndrome and other disabilities were greatly misunderstood and underserved. Inspired by her daughter, who was born with Down Syndrome, Murphy embarked on a relentless quest to enhance healthcare and support services. "They told me I could expect her to live to be 40," Leone shares, reflecting on the limited prognosis given for her daughter's life expectancy at that time. "But now they're moving into their fifties and sixties and are starting to experience early onset dementia due to having three of the 21st chromosome, which is linked to Alzheimer's disease," Leone explains. "It's still a relatively new field, and now we’re seeing more and more siblings stepping in to take over caregiving roles from their parents."
Reflecting on the early years, the transition for individuals with IDD at the age of 21 marked a significant challenge. Historically, when these young adults aged out of the school system. Many were relocated to developmental centers, which were not designed for long-term, nurturing care but rather functioned as holding facilities.
"The situation was deplorable," Leone recalls, "most families were told to give up their child, go on with their life and their other family members, and put them in a developmental center." This advice came from a time when the care and understanding of intellectual and developmental disabilities were deeply lacking.
Investigative journalist Geraldo Rivera exposed the harsh realities of these centers on national television, revealing environments where the absence of educational and vocational training was widespread. His reporting ignited public awareness and spurred significant advocacy efforts for more robust education and health programs for all individuals with intellectual and developmental disabilities. Inspired by the heightened awareness and calls for reform, Leone Murphy took decisive action to fill the void in healthcare services for individuals with intellectual and developmental disabilities.
Her dedication to helping establish the department at The Arc of Monmouth was crucial because it addressed a significant gap in healthcare for individuals with intellectual and developmental disabilities (IDD). Before this department was established, preventive healthcare for this group was largely neglected.
This lack of care became even more problematic when individuals with IDD turned 21 and transitioned from pediatric care under their family’s health plans to Medicaid. "Individuals with developmental disabilities are pretty comfortable with their pediatrician,” Leone explains. “But once they hit 21, they needed to transition to adult medicine, and that's where everything was lacking. There was no one to treat them at that point.”
Under Murphy’s leadership, The Arc of Monmouth’s health services department became known for its comprehensive approach, quickly becoming a model that could be replicated across other communities. The clinic emphasizes understanding each patient's family medical history, conducting cancer screenings, and facilitating regular wellness visits.
What does the future look like for the health services department? Leone says, "It just has to keep growing and adapting." She emphasizes the need to "be ready to change and think outside the box." Leone highlights that "the focus should not be on the obstacles but on solutions and proactive responses to healthcare needs."
Today, as The Arc of Monmouth marks 75 years of service, Leone Murphy's contributions are a testament to the power of committed advocacy. Her efforts have significantly shaped the organization and positively affected the lives of those it serves. Looking forward, her dedication will continue to inspire new generations of advocates and caregivers at The Arc of Monmouth, ensuring that her impact will resonate for decades.
