In the realm of healthcare and social services, certain terms carry significant weight due to their implications for care and quality of life. Two such terms are “intellectual and developmental disabilities (IDD)” and “medically fragile”. Understanding these terms and how they intersect with one another is crucial for providing appropriate care and support for individuals who fall under these categories.
Understanding Medical Fragility
“Medical fragility” refers to a patient that has medical conditions or health concerns that require 24-hour supervision from a skilled nurse. These conditions require health and related services of a type or amount beyond that required by individuals generally. Medically fragile individuals often require a high level of assistance with various activities of daily living (ADLs) and may need medical procedures or treatments that are not typically part of daily routines.
The Intersection With IDD
When it comes to individuals with IDD, medical fragility can present additional challenges. These individuals often have complex health issues that require specialized care and constant monitoring. Conditions such as Epilepsy, Cerebral Palsy, and Down Syndrome, among others, can lead to medical fragility.
IDDs are disorders that are usually present at birth and can affect the trajectory of an individual’s physical, intellectual, and/or emotional development. Many of these conditions affect multiple body parts or systems. When combined with or leading to medical fragility, the care needs of these individuals become even more complex.
For instance, individuals with Down Syndrome often have heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. These medical conditions, coupled with intellectual disability, make them medically fragile. Similarly, individuals with cerebral palsy might have accompanying disorders like epilepsy, autism, or intellectual disabilities, which further complicate their health status.
Individuals with IDD often have medical fragility that accompanies their diagnosis. Many complications are common, like seizures (which can have varied severity), mobility issues, diabetes, and more.
However, sometimes the complications are less common and lead to increased fragility, like the propensity for swallowing difficulties and aspirations, which may lead to the need for a Feeding Tube or complications with evacuating that could result in the need for catheter insertion.
G-tubes provide a means for feeding those who cannot eat by mouth, have difficulty swallowing, or need supplemental nutrition. While G-tubes can significantly improve the individual’s nutritional status, they also require careful management to prevent infections and other complications.
Catheters are often used to assist with urinary function in individuals who have difficulty evacuating on their own. This could be due to a variety of reasons, such as neurological issues, spinal cord injuries, or other medical conditions that affect bladder control. While catheter insertion can provide immediate relief and improve the quality of life for the individual, it also comes with its own set of challenges. Like G-tubes, catheters require meticulous care to prevent infections, particularly urinary tract infections, and other complications.
Each of these complications requires specialized care and management, further emphasizing the need for comprehensive care and support for medically fragile individuals with IDD.
Medically Supportive Community Residences
One approach to supporting medically fragile adults with IDD is through medically supportive community residences — like the ones we offer at New Concepts for Living (NCFL). These residences provide a comfortable and caring environment for individuals who require skilled nursing care. They serve as an alternative to Intermediate Care Facilities (ICFs) for certain medically fragile individuals. These residences are designed for those who desire a home environment but require 24-hour on-site or on-call nursing care.
At NCFL, our medically supportive community residences are fully accessible, featuring extra-wide doorways, spacious common areas, modern kitchens, and two separate family rooms. For the well-being and safety of residents, each home has a physical therapy/exercise room, as well as emergency exits in each bedroom. The bedrooms and bathrooms are equipped with ceiling mobility tracks, and all bathrooms are handicapped accessible. These residences offer medically fragile individuals a safe place to live where they can also receive the care and support they need.
The Need for Supervision
Nursing supervision is crucial for medically fragile individuals, especially those with IDD. In medically supportive community residences, in particular, nurses provide essential medical and nutritional care, ensuring that residents have unlimited access to their needs. They are on-site and/or on-call 24/7, providing the necessary care and attention that these individuals require.
The role of nursing supervision extends beyond basic care. Nurses are often responsible for coordinating care among various healthcare providers, ensuring that all of the individual’s health needs are met. They also play a vital role in educating the individual and their family about their health conditions and how to manage them. This includes teaching them about medication management, nutrition, physical therapy exercises, and more.
Moreover, nurses in these settings often serve as advocates for the individuals they care for, ensuring that they receive the services and supports they need to live fulfilling lives. They may work with social workers, therapists, and other professionals to coordinate services and advocate for the individual’s needs.
Medically supportive community residences with nursing supervision offer an environment that caters to the unique needs of these individuals, ensuring they have everything they require to live fulfilling lives.
At NCFL, our mission is to serve individuals with intellectual and developmental disabilities, and it is the fundamental force that makes us the premier community for adults with IDD in New Jersey. We are committed to caring for and nurturing adults challenged with special needs so they can attain their highest level of wellness, independence, and achievement. This includes providing medically supportive community residences for medically fragile individuals so that they receive the care and support they need to be successful and live long, fulfilling lives.
We recognize the need for quality services for every extraordinary individual in northern New Jersey and are committed to expanding. NCFL is currently building new community residences (group homes) in Old Tappan, Mahwah, Hillsdale, and River Vale—as well as planning to open a larger, state-of-the-art Day Program Facility in 2023—and is dedicated to finding ways to further expand and grow to better serve our community! You can learn more about the work we do, make a donation to support our mission, contact us for more information, or request placement for a loved one today!