According to the most recent data from the Center for Disease Control's (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network, the current prevalence of autism spectrum disorder (ASD) is about1 in 31 nationally. In New Jersey, the prevalence is 1 in 29. 

In 2009, the Adults with Autism Task Force, created by statute to make recommendations to the governor and legislature about services that would meet the needs of adults with autism, issued its report of findings. In 2010, one of its recommendations - to establish an Office on Autism within the Division of Developmental Disabilities - was carried out.

The Office on Autism provides a central place within DDD to handle issues related to ASD and collaborate with other state agencies and community partners. It promotes and shares best practices for training staff and supporting people with ASD and helps raise awareness about autism in the community.

Autism Family Guide

The Autism Family Guide was developed by the NJ Interdepartmental Workgroup on Autism Spectrum Disorder.

• English: Autism: A Family Guide to Navigating NJ Service Systems for Individuals with Autism Spectrum Disorder and other Developmental Disabilities.pdf
• Spanish: autismo: Un guía familiar para navegar por los sistemas de servicios de NJ para personas con trastorno del espectro autista y otras discapacidades del desarrollo.pdf

The Office of Education on Self-Directed Services (OESDS):

• Provides education and training on using self-directed services (Self-Direction Options and Education) to access DDD-funded services. OESDS does not replace a person's support coordinator. 
• Provides technical assistance for agencies providing or interested in providing Supports Brokerage, and for people interested in using the service.
• Organizes WIN (What I Need) sessions every other month, usually on the second Wednesday of the month. WIN sessions provide a forum for professionals (support coordinators, supports brokers, providers) who support people who are self-directing their services to ask questions and learn more about self-direction. 
• Organizes quarterly virtual peer-to-peer networking sessions for adults with intellectual and developmental disabilities (IDD) who are self-directing their services or want to learn about self-direction. 
• Organizes in-person and virtual family networking sessions throughout the year for families who have a loved one with IDD who is self-directing their services or wants to learn about self-direction.

Email the Office of Education on Self-Directed Services Helpdesk at DDD.OESDS@dhs.nj.gov if you want to:

• Ask questions about self-direction
• Ask questions about WIN sessions, peer-to-peer networking sessions, or family networking sessions
• Request training or technical assistance related to providing or receiving self-directed services
• Ask to be added to the OESDS Listserv

To learn about DDD's two self-direction models and how to enroll in and start receiving self-directed services, go to Self-Direction Options and Education.

The Office of Transition to Adult Life & Employment:

• Provides virtual and in-person presentations to schools and other organizations and groups on transitioning from school to adult life and adult developmental disability services, navigating the DDD service system, and community integrated employment
• Organizes virtual and on-site family guidance days for schools so students, families or school personnel can schedule a 15- or 20-minute time slot to meet one-to-one with a DDD transition specialist (can be held during or after school hours)
• Participates at school and community transition fairs and conferences across the state with an information/exhibit table and representative
• Organizes quarterly, virtual DDD welcome sessions and the monthly Transition Thursdays Webinar Series

For more information and resources, visit our Transition to Adult Life webpage.

If you have questions, email the Transition Helpdesk at DDD.Transition@dhs.nj.gov.

Join the Transition Listserv!

The National Association of Councils on Developmental Disabilities (NACDD) was awarded a five-year grant for a national Community of Practice (CoP) focused on improving aging services for individuals with intellectual and developmental disabilities (IDD), as well as their aging families. New Jersey is one of 15 states participating in the Bridging Aging and Disability Networks Community of Practice.

Statewide Partners*

• New Jersey Council on Developmental Disabilities (NJCDD): Statewide
  • Mercedes Witowsky (email mercedes.witowsky@njcdd.org) - Statewide and Regional Family Support Planning Councils, People First, Partners in Policymaking, advocate for issues that affect people with IDD in their communities.
• New Jersey Division of Developmental Disabilities (DDD): Statewide
  • Patricia Brennan (email patricia.brennan@dhs.nj.gov) - Supports and services for people with IDD aged 21 and older, education on self-directed services, waiting list, special projects, Community of Practice for Supporting Families.
• New Jersey Division on Aging Services (DoAS): Statewide through county offices
  • Andrea Mancini (email andrea.mancini@dhs.nj.gov) - Administration of a number of federal and state-funded home and community-based programs that make it easier for older adults to stay healthy and live independently as long as possible, and to support their caregivers. Oversight of county offices on aging and other contracted providers that offer these services locally. DoAS also administers programs to help pay Medicare premiums, prescription costs, and other living expenses.

*See Aging and Disability State Alliance Team (SAT) Directory.pdf

Since 2019, New Jersey has been a participating state member of The Community of Practice for Supporting Families of Individuals with Intellectual and Developmental Disabilities - New Jersey. 

The Community of Practice for Supporting Families exists to enhance and drive policy, practice, and system transformation to support people with intellectual and developmental disabilities (IDD) within the context of their families and communities.

Member states:

• Are committed to developing systems of support for families throughout the lifespan
• Receive technical assistance, products, and opportunities for shared learning
• Are supported by a national team to integrate innovative practices into existing and ongoing state systems change efforts

As an active state member in The Community of Practice, New Jersey strives to enhance best practices for supporting families and encouraging people with IDD to live their best lives in their communities by using Charting the LifeCourse Tools.

New Jersey Goals and Priorities

New Jersey’s goals for participation in the National Community of Practice (CoP) center on people with disabilities and families being fully empowered to communicate their vision for a good life. We also challenge professionals and systems to ask questions, listen, and act on strategies to help people achieve personally meaningful outcomes.

Since joining the CoP, New Jersey’s team has been successful in achieving goals in several focus areas, including:

• Laying the foundation for strong agency partnerships
• Using accessible, person-centered tools to shift the mindset about how supports are or can be utilized
• Launching an introduction to Charting the LifeCourse Tools and Community of Practice for Supporting Families principles to all Regional Family Support Planning Councils statewide
• Integrating Charting the LifeCourse principles across the system and focusing on cross-system communication
• Establishing a Stakeholder Workgroup and Action Group for CoP activities

New Jersey is a proud member of the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) Self-Direction Learning Collaborative.

The National Center on Advancing Person-Centered Practices and Systems (NCAPPS) is an initiative from the Administration for Community Living and the Centers for Medicare & Medicaid Services that helps States, Tribes, and Territories implement person-centered thinking, planning, and practice in line with U.S. Department of Health and Human Services policy.

New Jersey is one of 23 teams that were accepted into the NCAPPS Self-Direction Learning Collaborative (SDLC). The SDLC brings state teams together to engage in peer-to-peer learning. The teams collaborate to learn about, test, and implement specific systems change efforts focused on the global aim of enhancing the availability, quality, and access to self-direction. They are guided by best practices and structured to promote and accelerate local efforts.

New Jersey Goals and Priorities

Each state team has chosen one or more focus areas to pursue. New Jersey’s goals include:

• Permanently weaving the principles and practice of self-direction into New Jersey’s service delivery system
• Promoting the incorporation of person-centered practices into all facets of our work
• Providing education and networking opportunities for individuals and families who are self-directing
• Recognizing the insights and amplifying the voices of people receiving services and incorporating the lessons, goals, and needs of those with lived experiences into our collective work
• Developing and sharing accessible, plain-language resources on self-direction for people receiving services, family members, and professionals to learn about its benefits and how it works
• Engaging in cultural competency skill building to ensure we are participating ethically, equitably, and effectively in personal and professional intercultural settings

New Jersey’s SDLC Stakeholders and Member Organizations

• Self-advocates
• Family members of people with IDD 
• The Boggs Center on Disability and Human Development
• New Jersey Council on Developmental Disabilities
• Community Living Education Project (CLEP)

Each year, the Division of Developmental Disabilities participates in National Core Indicators^®-Intellectual and Developmental Disabilities (NCI^®-IDD) quality measurement surveys.

Compiled and published by NCI, the survey results:

• Provide insight into people's experience of our home and community-based services (HCBS) waiver programs
• Help us understand the effectiveness of our HCBS waiver programs and improve services for everyone

View survey results at Survey Reports & Insights - NCI-IDD.

NCI-IDD Surveys New Jersey Participates In

• Individual and Family Surveys (see DDD's National Core Indicators (NCI) Survey Overview.pdf)
  • In-Person Survey – Conversations with adults who receive at least one DDD-funded service in addition to Support Coordination.
  • Adult Family Survey – Survey link sent to family members who have an adult, 21 or older, who lives in the family home and receives at least one DDD-funded service in addition to Support Coordination.
  • Family/Guardian Survey – Survey link sent to family members/guardians who have an adult, 21 or older, who lives outside of the family home and receives at least one DDD-funded service in addition to Support Coordination.
• State of the Workforce Survey (see DDD's NCI State of the Workforce Survey Overview.pdf)

DDD Presentations of NCI-IDD Survey Results

• NCI®-IDD Family Surveys: Overview of NJ Results 2022-2023.pdf
• NCI®-IDD In-Person Surveys: Overview of NJ Results 2022-2023.pdf
• NCI®-IDD State of the Workforce Survey Report 2023.pdf