NCA and Legacy Enhancement Trust Collaborative Success Story: How Comprehensive Advocacy Changed a Life

At National Care Advisors, we believe that comprehensive, hands-on advocacy can change the trajectory of a life, especially for individuals with complex care needs. These are values that NCA and Legacy Enhancement Trust share and this case is a powerful example of how nurse-led case management, cross-disciplinary coordination, and long-term commitment can create meaningful, lasting outcomes.

A young individual with complex care needs named John had a Special Needs Trust (SNT) through Legacy Enhancement Trust. John was 13 years old and had been diagnosed with Spina Bifida at birth. He also struggled with ADHD, Disruptive Mood Dysregulation Disorder (DMDD), mild intellectual disability, anxiety and depression. At the point of his trust being funded at Legacy, he was residing in foster care, as the Department of Children and Families (DCF) had determined that his parent had been unable to adequately care for his higher needs due to health concerns of their own. John had been appointed a Guardian Ad Litem (GAL), who was hoping to transition him back into his parent’s home.

John’s trustee at Legacy knew immediately that this case was complex and that ensuring his utmost quality of life would take cross-disciplinary collaboration. Legacy and NCA had worked together on many complex cases in the past and they knew that partnering on this case could lead to the best possible outcome.

In January 2020, Legacy hired NCA for a Special Needs Assessment. After the completion of the initial SNA, it was clear to John’s trustee and the assigned Nurse Consultant at NCA that intensive case management was needed to facilitate the best possible living situation and quality of life for him. NCA Nurse Consultant Julie began working hands-on and engaging in daily communication with all involved parties in this case. One of the first major steps was ensuring that John’s benefit enrollments were current. Julie quickly discovered that they were not, finding that John was not enrolled in SSI or SNAP benefits. She made sure to get him enrolled for both benefits immediately, as well as successfully establishing a Representative Payee for John to help manage his funds. Julie also assisted in managing his medical appointments, including attending them virtually.

As the leaders of John’s care team, NCA and Legacy knew that a major objective was ensuring that John’s parent’s home was a safe, healthy, and functional living situation for him, especially considering his higher care needs.

In October of 2020, John was officially moved back into his parent’s residence. As part of the process of moving John back in, Julie hired ongoing support, including a cleaning service and a nurse to administer medication and provide instruction for self-care. Julie also helped the family purchase a tablet, a smartwatch, and a cellphone for John to facilitate safe, consistent communication, but due to John's behavioral issues, many of the devices were lost or broken. NCA’s Education Consulting team was also engaged ensure that John was receiving the most supportive education possible. Despite these intensive interventions, John was not thriving in this living situation. He was struggling in school, exhibiting behavioral issues at home, and his mental health was poor.

In 2023, John began developing a close mentorship with a neighbor in his and his parent’s apartment complex. The neighbor, Steve, who was a retired state police officer, saw a young man struggling and wanted to take him under his wing. Steve became an incredible mentor, role model, and friend to John, taking on an active role in his life. This mentorship began with Steve helping out John and his parent in their apartment. It evolved into Steve teaching John to cook meals and even letting him come to his apartment to get the space he needed from the strained relationship he had with his parent. When it became clear to Julie and his trustee that John’s current living situation with his parent was no longer functioning, Steve did something incredible. He opened his home to him. The next course of action was obvious. NCA, DCF and Legacy, along with all involved parties, agreed that John moving in with Steve offered him the best possible chance for a happy, healthy, and safe living environment. After intensive vetting from DCF and with NCA’s support and facilitation, John officially moved in with Steve in January 2024.

The change in John was like night and day. With support from NCA, Steve was able to provide John with the stable home and hands-on support that he desperately needed to thrive. NCA’s education consulting team introduced speech therapy for a previously unaddressed speech impediment and assisted in transferring John to a special trade school program that he loved. John’s behavioral issues improved dramatically, and his psychiatrist was able to wean him off his psychiatric medications. John was even able to start pursuing his driver’s permit with lessons from Steve. After about 2 years of this new living arrangement, Steve officially adopted John, per John’s request.

This was the best possible outcome that everyone involved in John’s case could have hoped for. Seeing a young man who was struggling with his circumstances thrive and excel is something that makes the collaboration between National Care Advisors and Legacy Enhancement Trust so fulfilling. Now, after over five years of advocacy and support, the phone calls between Nurse Consultant Julie, his trustee at Legacy and the remaining members of John’s support team, which were once daily, are now check-ins every 3 to 4 months. John’s future is bright, and his story serves as a powerful reminder that comprehensive and hands-on advocacy services can make all the difference in maximizing the quality of life for individuals with complex care needs.

At National Care Advisors, our goal is to support trustees in making the best, most informed decisions for their clients, based on the individual's unique complex care needs, available resources, and current and future quality of life needs. Contact us today to discuss how National Care Advisors can assist in maximizing quality of life for you or your client!