A neat, casually dressed man enters a sunlit room and scans it.
His blue eyes focus on a slender, dark haired woman, and he walks toward her and lays his head on her shoulder. Wrapping her arms around him, she kisses his cheek.
“Mommy’s here Stevie,” she says. “Mommy’s here.”
Steven Johnson is a 43-year-old man born with several physical disabilities, plus a profound intellectual disability due to Cri Du Chat Syndrome, a French term coined to describe the high pitched cry of babies born with this rare abnormality which is similar to a cat’s cry.
Cri Du Chat Syndrome, also known as “5P Syndrome,” occurs when there’s a break in the DNA molecule in chromosome No. 5 or as a sperm or egg cell is developing. The DNA break causes a chromosomal deletion resulting in missing genes. Should this egg or sperm cell connect with a healthy cell during conception, then Cri Du Chat Syndrome will occur.1
Johnson has lived in community based homes for people with developmental disabilities since childhood, residing in a Lexington (Lexington Center) home in Stratford, N.Y. since 2002.
His parents not only had one child with disabilities, but they had two; Steven’s brother, Wally, was born with Down syndrome.
Caring for two children with disabilities led the Johnson boy’s mother to become an articulate and passionate advocate for children with disabilities. Of the 54 million Americans with physical and/or mental disabilities, 16 million need assistance with daily living like Steven.2
Lexington is the Fulton County Chapter of NYSARC, Inc., a private non-profit agency with headquarters in Gloversville N.Y. It provides services for 850 adults and children with disabilities through: service coordination; residential and day programs; supported employment; and other community based supports.
Lexington doesn’t follow a “medical model”, rather the agency provides person-centered individualized supports based on a person’s needs and desired personal outcomes, said Nancy DeSando, BS RN, Division Director of Health and Family Services at Lexington.
“We support people of all ages and abilities, from those who are quite capable but need job skills or counseling to those who have significant physical and/or intellectual disabilities and need 24-hour support from staff,” she said.
Experienced nurses and clinicians assess clients for swallowing disorders or special therapy needs, DeSando added. “As needed, clinical supports may include PT, OT, speech therapy, psychology, psychiatric services, and nursing services, including for those needing assistance with G-tubes, trachs, dialysis or cardiac issues,” she explained.
Supportive Environment: Steven Johnson, 43, who has lived in community-based homes since childhood, residing in a Lexington Center home in Stratford, N.Y. since 2002, shares a moment with developmental disabilities nurse, Laurie Harper, RN, who is on staff at the 12-resident facility. photo by Joan Fox Rose
A Day with Steven
Steven lives with 11 other individuals in a lovely home in a small town in rural New York. The home has a large yard and beautiful surroundings. Lexington homes vary in size, from small apartments to homes for 3-4 residents, and even some with room for 12 people, like the home in Stratford.
Steven rises early and specially-trained staff help him with personal care before breakfast. He chooses his breakfast and brings his food to the wooden table in the dining room where staff help him cut the food up to eat, said Laurie Harper, RN, a developmental disabilities nurse in Lexington’s residential nursing department.
Because Steven had abnormal larynx development, he can only utter a few sounds but cannot speak. He communicates through sounds, gestures, body language and the use of a communication switch to ask to take a walk, eat or use the rest room.
Steven walks with a rolling gait so staff who accompany him consistently remind him to pick up his feet as he moves. He loves being in and around the kitchen, and has fun spinning items like a top.
After breakfast Steven and his housemates go to a community-based day program about a half hour away. There he works with specially-trained staff and clinicians on skills he needs to be more independent.
Harper’s office is located at the program and she often interacts with him there as well as coordinating his healthcare needs with others on his team.
Steven is a friendly, outgoing person who is very aware of his environment and other people. He is especially fond of outdoor activities but also enjoys watching Star Wars and I love Lucy reruns on TV. He does well in calm, supportive environments with staff keenly aware of his favorite pastimes and the need to treat him with respect.
The staff and Steven’s parents understand Steven’s “valued outcomes” are extremely important to him. They include: looking nice, communicating better with others and making friends.
On weekends, Steven and his friends go to many different community activities.
As a nursing case manager, Harper coordinates all health services, medical appointments, and works with other clinicians, including Steven’s physician, to ensure he receives all the needed nursing and medical supports.
Harper also trains and provides clinical supervision to staff who provide personal care services and who assist Johnson with taking his medications. She provides this same care coordination to 27 other clients, and is the point person in communicating with families and other staff.
“I enjoy caring for and being with Steven and others, and we all do our best to provide as full a life as possible for the people we provide supports to,” Harper concluded.
DeSando added that nurses who work in the field of developmental disabilities find a truly special and rewarding career.
Coming from a hospital nursing background, the 25-year veteran at Lexington said she quickly learned just how challenging it would be to work with patients with disabilities.
But those challenges would pale compared to the “immense satisfaction” she’s experienced in working as a developmental disabilities nurse administrator.
“People with disabilities deserve opportunities and supports to help them to lead full, rich lives,” she said emphatically.
References for this article can be accessed here.
Joan Fox Rose is registered nurse and freelance writer.