An intellectual or developmental disability, or I/DD, is multifaceted, complex and diverse. No one's needs are exactly the same. Individuals with I/DD may be quite independent, need moderate support or require complex care. Regardless of the diversity of a disability, those who receive any one of a multitude of diagnoses have one thing in common: They will always need support.
New Jersey is home to a significant population of individuals with I/DD who require ongoing support throughout their lives. According to the latest data from the CDC Centers for Disease Control and Prevention, about 1 in 35 (or 2.9%) of 8-year-old children in New Jersey were identified with autism spectrum disorder, or ASD, in 2020, making New Jersey one of the states with the highest autism prevalence in the nation. As these children grow into adulthood and age out of critical services, the challenges for individuals with I/DD -- and their families -- become even more pronounced.
From the moment a parent learns that their child has an I/DD, they experience extreme anguish, worrying about finding appropriate care. Unfortunately, adults living with I/DD continue to experience challenges when looking for available programs and services. Many New Jersey families go through painstaking and extensive efforts searching for and applying to numerous providers, only to be put on waitlists, leaving them unsure if their loved ones will receive the services they require. In addition to trying to enroll in a program that provides supervision, life skills and community integration during the day (day programs), many families are searching for residential placement for their loved ones. Parents are often riddled with fear and uncertainty as they worry what will happen to their children when they are no longer able to care for them. According to the state Division of Developmental Disabilities, or DDD, nearly 4,000 people living with developmental disabilities are currently on a waiting list for the Community Care Program, which provides the funding needed for individuals to live in a supervised residence. Many guardians complain of subpar services, neglect and even abuse in group homes as well as some day programs. Unfortunately, there are just not enough quality programs for the growing number of adults with I/DD.
As CEO of New Concepts for Living, or NCFL, a not-for-profit provider of community residences, day programs and therapeutic services for adults living with I/DD, I understand all too well the pain-points these individuals and their families experience. Representing a wide variety of diagnoses, such as autism, cerebral palsy, Down syndrome, fetal alcohol syndrome and brain injuries, as well as rarer conditions such as Williams syndrome, Prader-Willi syndrome and Rett syndrome, these individuals may also require specialized medical attention or have specific behavioral needs that accompany their diagnoses.
Having achieved our goal of becoming a leading provider of services for this vulnerable population, NCFL has expanded our mission and vision to focus on consistent growth and an effort to raise the bar for other agencies, setting a standard of excellence. It is vital to ensure that comprehensive, high-quality and compassionate care in both residential and day programs is available to all individuals with I/DD in the state.
We recently opened our Paramus Achievement Center, a state-of-the-art facility designed to address the growing needs of adults with I/DD in North Jersey and surrounding areas. This 81,500-square-foot facility houses three distinct day programs for those with low support needs, high support needs and significant medical needs. NCFL's targeted programs enable our team to better meet individualized requirements and foster growth.
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Our achievement center also offers dedicated spaces for life skills, recreation, sensory rooms and therapeutic services. Adults with I/DD have a wide range of challenges, calling for physical, occupational, behavioral and speech therapies. Our expansive center not only offers all these services and programs, but it also provides a nurturing environment with a focus on community inclusion, so our participants have a wide variety of daily trips and outings to let them connect with others in their community.
We are so proud to bring our achievement center to Bergen County, offering a space where adults living with I/DD can flourish for the rest of their lives. With a waiting list of nearly 500 individuals, many of whom are looking for residential services as well, we are also committed to opening new community residences to meet the needs of those ready to live among their peers in a safe, supervised and nurturing home.
We are grateful to New Jersey's DDD and our state legislators for their support in making our achievements possible. NCFL's continued growth will address our waiting list, bringing more deserving people into our programs. Unfortunately, the demand for comprehensive services is far greater than any single agency can meet alone. It requires dedicated commitment to improving quality and continued growth by all agencies.
I envision a time when parents and guardians no longer fear for their loved ones' future, and adults with I/DD feel safe and supported and are enabled to thrive. If other disability providers and allies commit to raising the bar and improving their services and capacity, I am confident that together we can make this a reality.
Steve Setteducati is CEO of New Concepts for Living in Paramus, New Jersey, a not-for-profit provider of community residences, day programs and therapeutic and behavioral services for adults 21 and over living with intellectual and developmental disabilities.