Protecting Lives Through Transparency and Collaboration Health

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Protecting Lives Through Transparency and Collaboration

Health & Safety in Intellectual/Developmental Disability Service Delivery System

New Jersey Regional Family Support Planning Council’s Health and Safety Subcommittee’s Accomplishments
As of July 2025

The New Jersey Regional Family Support Planning Council’s Health and Safety Subcommittee (HSS) was initiated as a result of a family member whose adult daughter passed away in 2019 while living in a state-licensed, provider-managed home. Her death, caused by a series of unaddressed but common health issues for individuals with intellectual and developmental disabilities (I/DD), exposed critical gaps in health and safety oversight and accountability within the service system.

With strong support from the New Jersey Council on Developmental Disabilities (NJCDD), HSS and NJCDD developed the Health and Safety White Paper in 2021. This paper emphasizes preventive measures and effective communication between providers and families to drive systemic changes, ensuring that services and supports are delivered with appropriate oversight, transparency and accountability. The goal is to promote timely and effective healthcare interventions, leading to improved health and safety outcomes for individuals with I/DD, co-occurring medical/behavioral conditions, and emerging healthcare needs.

The HSS meets at least monthly to review the initial White Paper and strategize efforts to follow the paper’s recommended areas needing improvement.  In addition to internal HSS committee meetings, invited guests have included:

  • Families whose loved ones experienced abuse and/or neglect in their residential setting
  • Multiple meetings with Jonathan Seifried, Assistant Commissioner of the Division of Development Disabilities
  • Lauri Woodward, Former Director of the Office of Program Integrity and Accountability
  • Deborah Robinson, Current Director of the Office of Program Integrity and Accountability
  • Geralyn Molinari, Provider Relations Director for the Division of Medical Assistance and Health Services
  • Kourtney Pulliam, Interim Program Manager, Division of Family Health Services, Special Child and Early Intervention Services, Family Centered Care Services
  • Multiple meeting with Paul Aronsohn, New Jersey’s Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families
  • Meetings that included leaders and providers of the Trade Organizations

HSS also relies on discussing proposed legislation, data reports and activities of other efforts including participation in DDD’s workgroups on revamping Direct Support Professional and Support Coordination training and competency, outreach and discussions with their advocacy organizations and following efforts like The NJ Ombudsman annual reports and The Urgency of Now paper. HSS continuously updates its workplan to reflect existing efforts and new concerns to guide their ongoing advocacy for systemic change and capacity building.

Since its release, HSS and NJCDD have worked with the Division of Developmental Disabilities (DDD) within the New Jersey Department of Human Services, alongside individuals with I/DD and their families, Direct Support Professionals (DSP), and provider agencies, to advance meaningful changes that promote the health, safety, and well-being of people in and out of provider-managed settings. Below is the list of accomplishments as of June 2025.

While these accomplishments represent significant progress, the work is far from over. Ensuring that every individual with I/DD receives safe, respectful, and person-centered care requires continued collaboration, accountability, and advocacy. The Health and Safety Subcommittee remains committed to collaborating with DDD and provider agencies, while amplifying the voice of individuals with I/DD and their families and addressing ongoing challenges. Together, we will continue advancing the systemic changes still necessary to protect and support individuals with disabilities across New Jersey.

Advocacy Accomplishments

Advocacy Accomplishments:

  1. Improve health outcomes by avoiding preventable illnesses, injuries, and deaths
    1. Served on the Direct Support Professional (DSP) Competency and Capacity Building Steering Committee and strongly advocated for revisions to previous DSP training that included new DSP training requirements. This has resulted in the number of required DSP training hours increasing from ~30 hours to ~60 hours.
      1. New Trainings: DDD – Overview of Home and Community Based Service Settings Rule; DSP Professionalism; Everyone Can Communicate; Introduction to Developmental Disabilities; Introduction to Trauma Informed Supports; Overview of Dual Diagnosis; Person-Centered Planning; Understanding and Preventing Life Threatening Health Conditions (More commonly known as the Fatal 5 plus); Understanding Behavior and Effective Supports
      2. Updated Trainings: Basic Safety (Provider Developed); Cultural Competence; DDD Service Documentation Requirements & Medicaid Fraud, Waste and Abuse; Fire Evacuation and Emergency Procedures (Provider Developed); HIPAA; Incident Reporting; Individual Rights and Choice; Introduction to Positive Behavioral Supports; Medications Practicum (Including Medication Competency Assessment and Medication Administration Skills Evaluation); Medications Training; Supporting Healthy Lives; Universal Precautions; Working with Families
    2. Support Coordination Enhancements
      1. Advocated for the revision of the Addressing Enhanced Needs Form and Monthly Monitoring Tool to include health and safety needs
      2. Served on the DDD Support Coordination Competency and Capacity Building Committee to infuse HSS’s White Paper recommendations, especially the effective use of the Addressing Enhanced Needs Form
      3. Added the following to the Support Coordinator Responsibilities section of the Community Care Program and Supports Program manuals:
        1. Ensuring the person is at the center of the planning process
        2. Ensuring that, for individuals assigned an acuity, that the Addressing Enhanced Needs Form is updated at least annually and revised more frequently during the plan year as necessary. The individual/guardian shall have the opportunity to be involved in the process.
        3. Ensuring that there has been a discussion regarding a behavior plan for individuals with behavioral concerns and that a behavior plan is in place as needed, particularly when the individual is assigned acuity due to behavior. This shall be documented in the Individualized Service Plan (ISP).
        4. Alerting the planning team that, with a doctor’s order, certain charting can occur as medically necessary such as food intake, blood glucose levels, etc.
        5. Ensuring that there has been a discussion regarding the medical needs of the individual and that these needs are documented in the ISP. This is to include the need for data collection of bowel movements, urine output, seizure activity, etc. Should the planning team agree that such data collection is medically necessary, and the individual’s primary care physician provides a prescription for it, this shall also be documented in the ISP along with the responsible party who will record and store the information.
        6. Notifying the Division’s Home and Community Based Services (HCBS) Helpdesk at HCBShelpdesk@dhs.nj.gov if they are notified that a provider owned or controlled setting is not in compliance with the HCBS Settings Rule.
  2. Require implementation of electronic health records
    1. Explored the feasibility of a statewide Electronic Health Record
  3. Improve provider-individual-family relationships through transparency and collaboration
    1. Collaborated with family members and provider agencies to develop the Family and Provider Relations guidance document in August of 2022 addressing retaliation against families that report care concerns
    2. Released an FAQ document on reporting suspected abuse, neglect, and exploitation in July 2019
    3. Promoted meaningful inclusion of individuals with I/DD in all meetings and planning related to their services and supports
  4. Eliminate abuse, neglect, and/or exploitation
    1. Legislative Advocacy
      1. Shared testimony on Senator Vitale’s comprehensive legislative package to Enhance Safety and Accountability in Developmental Disability Services
    2. Provided input into the DDD’s Provider’s Guide to the Home and Community-Based Services (HCBS) Settings Final Rule, helping to advance safety, transparency, and accountability in service delivery
    3. Provided feedback on the Office of Program Integrity and Accountability’s “Department of Human Services (DHS) Licensed Provider Report Card”
  5. Other Advocacy Efforts
    1. Advocated for the expansion of behavioral health services for adults with dual diagnosis
      1. Ongoing monitoring of DDD’s Behavioral Health Stabilization Homes and Acute Behavioral Health Stabilization Unit which serve adults with I/DD and Co-Occurring Behavioral Health needs
      2. Ongoing monitoring of DDD’s progress in creating a National Association for the Dually Diagnosed (NADD) Competency Based Dual Diagnosis DSP Certification Pilot program
      3. Ongoing monitoring of DDD’s progress in establishing a Systemic, Therapeutic, Assessment, Resources, and Treatment (START) program, which provides community-based crisis prevention and intervention services for individuals with I/DD and Co-Occurring Mental Health needs
    2. DSP Workforce Development
      1. Monitored the development of the DSP Career Pathway Certificates offered by Bergen Community College and Rowan College of South Jersey
      2. Advocated for greater DDD budget investments that have resulted in the DDD budget increasing 200% since Fiscal Year 2018 which is a $2.5B increase
      3. Advocated to strengthen the direct care workforce which supported:
        1. DSP wage increases from $12.66 per hour in 2018 to ~$20.87 in 2025.
        2. Rollout of Jobs that Care New Jersey
        3. DHS application for the Administration of Community Living (ACL) Direct Care Workforce Strategies Center Technical Assistance Grant which they were awarded
        4. Rollout of a Loan Redemption Program
      4. Participates in the national Community of Practice (CoP) for Supporting Families Across the Lifespan
        1. Since 2019, DDD, NJCDD, and the Boggs Center have led the national Community of Practice (CoP) initiative to advance systemic change.
        2. This collaborative leadership supports people with disabilities and their families in articulating their vision for a good life, and empowers professionals and systems to ask meaningful questions, listen, and take action on strategies that help make that vision a reality.

NJCDD-Health. Safety.White.Paper

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Summary of Health and Safety Subcommittee’s White Paper

Recommendations to Improve the Health and Safety of Individuals with Intellectual and Developmental Disabilities Who Receive Services from the New Jersey Division of Developmental Disabilities

The Health and Safety Subcommittee (HSS) was initiated by a family member whose adult daughter died in 2019 while residing in a state-licensed provider-managed setting. HSS is working with the Division of Developmental Disabilities (DDD) within the Department of Human Services (DHS) and provider agencies to create systemic changes to ensure such tragedies like this never occur to any individual with I/DD again. Unfortunately, lives remain at risk; the time to act is NOW!
Individuals with I/DD who live in provider-managed settings and have co-occurring medical needs require individualized healthcare oversight.
The risk for a poor outcome intensifies for some individuals who lack the ability to communicate a health-related issue to the Direct Support Professional (DSP). The DSPs caring for persons with I/DD are generally inexperienced and/or receive limited training about common healthcare needs specific to the I/DD population. The lack of necessary staff training places the individual with I/DD in danger of serious illness and even death.

HSS has encouraged family involvement and seeks to create a partnership that includes families, DDD, provider agencies and self-advocates to construct a system of services and supports with appropriate oversight, transparency and accountability to ensure timely and appropriate healthcare interventions and improved health and safety outcomes for individuals with I/DD, co-occurring medical/behavioral conditions, and emerging healthcare needs.

Following is a brief summary highlighting some of the desperately needed systemic changes.

1. Improve Health Outcomes by avoiding preventable illnesses, injuries, and deaths.

• Require comprehensive DSP training on prevention and what to do for the most common causes of fatalities in the IDD population and require documentation of DSP competency by qualified professionals.
• Require DSPs to record health data (such as weight fluctuations, diet, intake/output, and symptoms of illness) daily with individual parameters that warrant reporting irregularities to a health care professional.
• Require the annual ISP meeting to include the development, review, and revision of the individual’s measurable health outcomes and a plan to address health and safety needs.
• Require providers to publish reports on aggregate results of health outcome achievements for consumers.

2. Require implementation of electronic health records.

• Make transparent documentation of health and safety-related records to be readily accessible to guardians, within agencies, and state entities via a dashboard (secure portal) for monitoring and surveillance of unsafe conditions.
• Require independent external evaluation of health and safety records.

3. Improve provider-individual-family relationships through transparency and collaboration.

• Require providers to give procedure and policy manuals to individuals, families/guardians annually.
• Ensure that individuals’ rights are protected by requiring providers to seek input from guardians whenever an individual is unable to communicate needs, signs of illness, or unsafe circumstances.      https://nj.gov/humanservices/ddd/documents/Family-Provider-Relations.pdf
• Require guardians (who have not given passive consent) to be consulted for issues related to health and safety to ensure trauma-informed care is provided.
• Require full access to health records to guardians.
• Require independent authorities outside of DHS to mediate unresolved issues following internal grievance procedures and to investigate complaints by individuals or guardians.

4. Eliminate abuse, neglect, and/or exploitation

• Require surveillance for potential risks and investigation of suspected incidents of abuse/exploitation and neglect to be conducted by a multidisciplinary team of qualified professionals.
• Improve provider transparency by increasing the requirements for communication of potential risks to guardians, DDD, and state monitors (Office of Program Integrity and Accountability) such as   inadequate staffing, unsafe conditions, and incident reports.
• Ensure provider compliance and effective enforcement of Standards for Community Care Residences and the federal regulation requirements for Home and Community Based Settings (HCBS).