In a noteworthy display of progress, the Goals of Care Coalition of NJ (GOCCNJ) has successfully advanced legislation supporting Medicaid coverage for community-based palliative care in New Jersey. Since the summer of 2022, GOCCNJ, a coalition of organizations dedicated to improving serious illness care, has tirelessly campaigned for improved services for vulnerable individuals living with serious illness.
The pivotal moment occurred when GOCCNJ members met with Assemblywoman Angela McKnight, Chair of the Assembly Aging & Senior Services Committee. Recognizing the urgent need for a comprehensive hearing on the gaps in care for individuals with serious illness, GOCCNJ requested Assemblywoman McKnight to hold such a hearing which she convened in February 2023.
At the hearing, GOCCNJ and several coalition members testified about the critical gaps in care and presented policy recommendations to address these challenges. The testimonies highlighted the desires of individuals living with serious illness to remain in their homes while emphasizing the need for expanded home and community-based services. GOCCNJ urged legislators to consider mandating support for community-based palliative care through the state Medicaid program.
Moved by the testimonies and guided by recommendations from the GOCCNJ Palliative Care Task Force, Assemblywomen McKnight, Speight, and Murphy, and Senator Codey introduced bills mandating that the NJ Department of Human Services, through the state Medicaid program, provide community-based palliative care for beneficiaries with serious illness. GOCCNJ quickly mobilized the coalition in support of the bills and as result, the bills received unanimous approval in the Assembly’s Aging & Senior Services Committee and subsequently in both the Senate and Assembly Health Committees. It now awaits consideration by the Budget & Appropriations Committees in both chambers and hopes are high that both committees will hold votes before the summer recess.
The swift progress of these bills is highly unusual and indicative of the significant momentum and support it has garnered. The efforts of GOCCNJ, in collaboration with Assemblywoman McKnight, Senator Codey, the Palliative Care Task Force, and other key stakeholders and dedicated legislators, have been instrumental in advancing this crucial legislation. The relentless advocacy, relationship building, and consistent engagement with legislators have played a pivotal role in GOCCNJ’s success thus far.
GOCCNJ’s commitment to building relationships with legislators extends beyond the current legislative endeavor. Regular meetings about the unique challenges NJ faces in caring for their seniors and people with serious illness and conversations about actions they can take as a state to address these challenges are routine. That’s because unfortunately, NJ ranks below the national average for delivering high-quality, person-centered care for seniors living at home with advanced illness and ranks last in terms of total cost of care for this population. These older adults with complex medical needs are disproportionate users of 911 calls, recurring emergency department (ED) visits, hospitalizations, and skilled nursing facilities and as a result often experience unnecessary suffering. Despite this high utilization of crisis care and high spending, NJ seniors with advanced illness often receive low-value, even distressing service contrary to their individual preferences at a cost of 20% more than people in other states. Furthermore, evidence demonstrates that seniors of low socioeconomic status suffer disproportionately in the face of serious illness, experiencing high unmet needs, poor quality of life, and excessive family caregiver burden.
GOCCNJ knows that a more equitable system of care for seniors living with serious illness is possible and that is why they continually advocate for policy change. Their participation in the C-TAC State Working Group provided valuable insights from other states who were undertaking efforts to advance policy supporting individuals with serious illness. The shared knowledge regarding the pioneering work of these other states paved the way for GOCCNJ to develop its own roadmap.
As the proposed legislation progresses through the NJ Senate and Assembly, GOCCNJ remains optimistic about the ultimate outcome.
