RFSPC Advocacy

RFSPC Provides Testimony at Senate Health, Human Services, and Senior Citizens Committee Hearing on Legislative Package to Enhance Safety and Accountability in Developmental Disability Services

On December 19, 2024, Dotty Blakeslee, Statewide Chair of the Regional Family Support Planning Councils (RFSPC), testified before the Senate Health, Human Services, and Senior Citizens Committee regarding the Legislative Package (S3750-S3756) aimed at enhancing the health and safety of individuals with intellectual and developmental disabilities (I/DD) and improving accountability among service providers.

While supporting a robust approach to increase provider accountability and enhance safeguards to protect individuals with I/DD, the RFSPC highlighted the following areas need further consideration:

1. Family involvement and communication: Ensure immediate notification and ongoing communication with families and guardians, establish their rights to access medical records, and increase their representation in advisory committees to enhance involvement and transparency.
2. Proactive prevention: Implement proactive measures and specialized training for Direct Support Professionals to provide wraparound support and prevent abuse and neglect before they occur.
3. Investigation processes: Expand the definition of abuse and neglect, shorten investigation timeframes, establish clear evidence protocols, and protect whistleblowers to enhance transparency and accountability.
4. Enforcement mechanisms: Establish clear guidelines for assessing the Department of Human Services’ new authorities, include an appeal process for agencies, and focus on addressing “bad actors” without penalizing well-performing agencies.

DCF Children’s System of Care, Contracted System Administrator’s Scope of Work

On June 24, 2024, the New Jersey Family Support Planning Council (RFSPC) submitted written comments and feedback to the Department of Children and Families, Division of Children’s System of Care (CSOC) regarding the Scope of Work (SOW) of the Contracted System Administrator (CSA), currently PerformCare. Stakeholder feedback will be used to develop a new SOW for an upcoming re-procurement process.

The CSA has a critical role, especially as a “front door” for parents or primary caregivers of children and youth with I/DD who anxiously, and often desperately, seek support and services. The Regional Family Support Planning Councils emphasized that all front doors to the state service system should be welcoming, easy, and streamlined. RFSPC  further stated that the CSA also must listen, understand, and respond to the needs of children, youth, and their families efficiently and timely. The philosophy and principles of person- and family-centered practice must be fully infused in every aspect of the SOW.

RFSPC also recommended that the CSA collect meaningful data and monitor the quality and effectiveness of services from the youth and family perspective. The current SOW includes collecting qualitative data, but more robust outcome measurements from youth and family/caregivers are needed. As illustrated in this news article, children and youth with severe behavioral needs and their families suffer from a lack of specialized services and long waitlists. The CSA can contribute to improving the service delivery system by gathering stories from people with lived experience so that CSOC and CSA can use them to identify the service gaps and create improvement plans.