Executive Summary of Stages

• Stage 1: Virtual Conversation (June 2025): Families and stakeholders shared experiences and concerns about safety and quality in licensed residential settings, inspired by the “Hidden at Home” investigative series.
• Stage 2: Draft Community Blueprint (July 2025): A draft Blueprint was created, outlining reforms and responsibilities for State Government, Provider Agencies, Frontline Staff, and Families/Guardians, with added focus on technology and advocacy.
• Stage 3: Community Voices & Vision (September – November 2025): Stakeholders participated in a full-day session to provide feedback on the draft Blueprint. In November 2025, a Blueprint Memo was submitted to Governor-Elect Mikie Sherrill.
• Stage 4: Workgroups and Timelines (December 2025 – Current): Efforts are now focused on establishing seven workgroups and advancing the goals identified in earlier stages.

Virtual conversation: Ensuring Safety & Thriving Lives in Licensed Settings

In light of the “Hidden at Home” investigative news series, which exposed critical flaws in New Jersey’s licensed residential settings for adults with intellectual/developmental disabilities (I/DD), we invite all stakeholders, particularly parents and other family members, to share their experiences. What’s working? What’s not working? How can we ensure our loved ones are safe, supported, and thriving?

This conversation aims to elevate the voices of families and drive meaningful change. Specifically, we want to learn your thoughts about how we – as a community – should move forward.

A Community Blueprint for Safe, High-quality Licensed Residences

On June 30, 2025, the Regional Family Support Planning Councils’ Health and Safety Subcommittee, the New Jersey Council on Developmental Disabilities’ Health and Wellness Subcommittee, and the Office of the New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families co-hosted a listening session to hear directly from stakeholders about the successes, challenges, and ideas for improving safety and high-quality care in licensed residential settings.

As a result of the conversation, a draft Community Blueprint for Safe, High-Quality Licensed Residences was developed. This blueprint outlines key roles and responsibilities, as well as necessary reforms, across four stakeholder groups—State Government, Provider Agencies, Frontline Staff, and Family Members/Guardians—and includes broader areas like the use of technology and additional advocacy areas.

We invite you to review the draft Community Blueprint and share your feedback to help shape the path forward:

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.

11/16/24

Cyber and Phone Safety for people with disabilities, parents and caregivers

Cyberspace and phones are wonderful tools but can be dangerous if used as tools for crime. While anyone can be a victim, individuals with intellectual or developmental disabilities have special concerns. This meeting will focus on scam prevention education, individuals’ rights and responsibilities, guardianship and supported decision making, and tools and resources for individuals with disabilities and their caregivers.

9/28/24

How to achieve coordinated support and services for children with I/DD

This session brings together professionals from the Department of Education, the Children’s System of Care, and a local care management organization to explore how these entities can collaborate to create comprehensive, wraparound services for families. Disability Rights New Jersey and the Office of Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families also shared their expertise and offered advocacy tips.

Our panelists discuss best practices and provide actionable strategies to help families navigate and access the support they need. This is an essential conversation for families with a child with IDD, offering valuable resources and guidance to ensure that every child receives the holistic care they deserve.

4/6/24

Housing Options for People with Disabilities

Listen to families who bravely endeavor their unique housing journey for their loved ones with disabilities. Learn about various housing settings such as traditional licensed group homes, “unlicensed” shared homes created by parents, apartments, and integrated housing. The panel will be joined by professionals who embrace person-centered planning and assist individuals with I/DD and their families to meet their housing and support needs. Disclaimer: Reference to any specific programs, providers, or services is for the information of the public and does not constitute an endorsement, recommendation, or favoring by the Regional Family Support Planning Councils or the New Jersey Council on Developmental Disabilities.

3/2/24

Medical Coverage for Your Loved One with Disabilities

Insurance is a critical necessity, particularly if your loved one has a disability. Insurance can be complicated because the rules can be different from insurer to insurer and your specific circumstances. Know that you are not alone.

11/4/23

Lead your loved one’s ISP team to realize their best life

Does your loved one’s Individualized Service Plan (ISP) reflect their likes and dislikes? Do you have a working relationship with your loved one’s Support Coordinator? Do you and the Support Coordinator use the ISP as a “GPS” to reach the destination your loved one envisions?

9/30/23

How to decode your child’s IEP

Whether it is a “brand new” or “same old” IEP, do you know how to read it and where to look for critical information? How can you collaborate with the child study team to meet your child’s unique needs? The Regional Family Support Planning Councils hosted a meeting to “decode” your child’s IEP.

6/3/23

A Community discussion on transportation: From barriers to solutions for community inclusion

*Due to technical difficulty, the first few minutes of the meeting were not recorded.*

Transportation is a major barrier to access to services for many individuals with intellectual/Developmental Disabilities. Paul Aronsohn, Ombudsman for Individuals with Intellectual or Developmental Disabilities opened the conversation followed by an individual and families sharing their experiences. Ms. Namecca Parker (NJ Transit) and Mr. Steve Cook (Arc Mercer) presented their innovative transportation pilot and program.

3/25/23

NJ FamilyCare/Medicaid and Individuals with IDD

NJ FamilyCare/Medicaid and Individuals with IDD: Preparing for the Start of Medicaid Redetermination.

11/9/22

Managing medical care: how to get the best care for your loved one

Managing the medical care of a loved one with intellectual and developmental disabilities can be challenging. There are so many factors and obstacles for families to navigate. A few family members share their stories and tried-and-true tips for various life stages and needs including (1) young children seeking the proper diagnoses, (2) adults with complex and multiple diagnoses, (3) individuals with behavioral needs, and (4) agency coordinated care.

10/1/22

Crisis Stabilization Services for Children and Adults with I/DD

Children and adults with I/DD often have co-occurring mental or behavioral needs. New Jersey Family Support Planning Council hosted a meeting to offer a forum for families to learn about the services and supports available in NJ.

5/14/22

Moving Ahead through the Endemic, Coping with Continued Challenges in a Productive Way

Given the virus is unlikely to disappear completely, COVID-19 is becoming less “front-and-center” for some people. Some of us found that increased flexibility and options, such as telehealth, virtual meetings, and parents as paid staff, have become an essential part of their new lives. Many of us continue to face various barriers to access to services. The state leadership shared promising practices and areas of improvement.

3/2/22

The Heart of Home: Person-Centered Housing Options for People with Intellectual/Developmental Disabilities

Finding the right housing and support for people with developmental disabilities is a constant challenge in New Jersey. Diane Riley, Executive Director of Supportive Housing Association of New Jersey (SHA NJ) and Jennifer Brown, Housing Navigator/Eiros Group, explains how they can help guide you and your loved ones to pursue appropriate housing and support.

11/20/21

Employment First: An interagency collaboration

David Hoff presented an overview of New Jersey’s Employment First policies and practices and its best practices and areas for improvement. Three NJ state agency staff provided interagency support to students in the transition from school to competitive integrated employment.

9/25/21

Pathway to Resilience: A Community Conversation with individuals with Intellectual/Developmental Disabilities (I/DD) and their families about the Adverse Childhood Experiences (ACEs)

Adverse childhood experiences (ACEs) are traumatic events in childhood that can cause life-long negative impacts on the developing brain. Children with I/DD are more likely to experience traumatic events than those without disabilities. New Jersey Family Support Planning Council

3/13/21

How to build an integrated care network to increase your loved one’s health and wellness

On Saturday, March 13, 2021 parent advocates joined our meeting to learn how to build an integrated care network to keep our loved ones healthy and well. Our own Regional Family Support Planning Council members, who also have medical, nursing, or social work education, shared with you their expertise and tips.

Northern Region Education Day Resources
Sat, October 26, 2019  |  10:00 AM – 3:00 PM

Speaker biography and contact information

Southern Region Education Day Resources
Sat, June 1, 2019  |  10:00 AM – 3:00 PM

Speaker biography and contact information

Advocacy By and For People with Disabilities

People First is the major self-advocacy organization in the US currently in 29 states, as well as in Canada, the UK, Germany, New Zealand, Austria, Hong Kong, Japan, and Italy, self-advocates are part of a grassroots movement organized and maintained entirely by individuals with disabilities, and dedicated solely to advancing the rights of citizens with disabilities across the globe.

People First organizations are unique in their philosophy that people with disabilities, no matter their level or type of support needs, are not only fully capable of taking ownership of their advocacy goals, but should work to become as independent as possible; setting their own agendas and maintaining their own network of volunteers and partners.

Now, the NJCDD is continuing to grow it’s People First network across the state developing new chapter and working to increase established chapters with new members. With the mission of growing advocacy efforts and adapting the philosophy of People First, in New Jersey.

Join the Movement in New Jersey

The NJCDD is calling on advocates all over New Jersey to join it’s network of People First New Jersey chapters in your county; uniting to affect real changes in their local communities, and coming together as a solid force to advance the rights and opportunities of people with developmental disabilities on the state level.

At the NJCDD, we’re calling on members of the Council’s former and graduates or our Youth Leadership and Partners In Policymaking programs to help establish these People First groups in their area, and to reach out to other individuals with disabilities to become empowered advocates as well.

What is Self Advocacy

There are several ways that people with developmental disabilities describe and define self-advocacy including:

1. Speaking up for themselves;
2. Making their voices heard;
3. Making their views known;
4. Making choices and changes in their own lives;
5. Coming together to support each other and have a say in the policies and practices that affect their lives.

Activities of self-advocacy groups include:

1. Making people aware of their rights;
2. Training and talking to other people about self advocacy;
3. Making information more accessible by using audiotapes or pictures;
4. Making concrete changes to improve their lives (i.e. improve voter accessibility);
5. Working to increase choices and quality of supports;
6. Planning and organizing self advocacy conferences;
7. Assisting people to speak up about abuse and exploitation;
8. Organizing to fight against discrimination.