Approximately 17.4% of children in New Jersey have one or more special health care needs. Sometimes these health challenges can be caused by changes in our genes. Genetics providers help families learn whether genetic changes may explain the health conditions in their family and connect families to appropriate care.

To address the unique needs of families across New Jersey, a diverse group of stakeholders met over the course of a year to share their perspectives and experiences about the barriers families face when trying to access genetic services in the state.  The team includes both genetic and non-genetic healthcare professionals, families and public health representatives. Together they identified the key obstacles that are preventing local families from obtaining needed genetic services.  Currently, the team is brainstorming ideas on how to address one of these pressing issues.

Visit this webpage for updates and details about their upcoming project and efforts to improve access to genetic services in New Jersey.

Resources for Children and Families with Genetic Conditions in NJ:

New Jersey Department of Health (DOH): The New Jersey DOH is an agency of the government of New Jersey responsible for public health issues.  It works to support and improve the health and safety of all NJ residents through disease pre​vention, access to care, quality management, and community engagement.  NJ Department of Health

Newborn Metabolic Screening The State of NJ and the Office for Genetics and People with Special Health Care Needs are dedicated to screening newborn infants for conditions that can cause serious illness, developmental delays, and even death if not detected in the first few weeks of life. Newborn Metabolic Screening

Zero to THREE : Zero to Three works to ensure that babies and toddlers benefit from the family and community connections critical to their well-being and development. Healthy connections help build babies’ brains. Zero to Three Resources for Families

NJ Division of Disability Services (DDS): The New Jersey DDs offers resources and support for families of disabilities. It specifically has resources on information and referral services, the traumatic brain injury fund, the personal assistance services program (PASP), managed long term services and supports (MLTSS) enrollment assistance for children under age 20, disability health and wellness initiatives, and NJ ABLE and NJ WorkAbility information and technical assistance. NJ Division of Disability Services

Personal Assistance Service Program (PASP): The personal assistance service program has a goal of supporting individuals with physical disabilities by providing personal assistants to help with personal care tasks. There is a cost share based on income. Personal Assistance Service Program

New Jersey Early Intervention System: This organization is for children, birth to three, with developmental delays or disabilities as well as their families. They provide resources concerning Autism, diagnoses, developmental red flags, and accessing early intervention services. NJ Early Intervention System

Disability Rights New Jersey (DRM):  This non-profit organization is New Jersey’s designated Protection & Advocacy agency. It is federally mandated to advance the civil rights of people with disabilities. They provide legal services, investigate allegations of abuse and neglect, provide information and referrals for people with disabilities, and provide outreach and educational services. Disability Rights NJ

Maternal and Child Health Consortia: This is a group of private non-profit organizations that provide prevention activities, education, infant and pediatric follow-up, and other services. Each organization (north, central, and south) have resources on their sites to support pregnant women through their pregnancy. Maternal and Child Health Consortia  

NJ Medicaid: The New Jersey Department of Human Services provides information on what Medicaid is and how to enroll. The site provides eligibility criteria and lays out step by step the procedure on how to apply. NJ Medicaid  

New Jersey Family Care: Family care is an affordable health insurance program for children aged 18 and younger and pregnant people. These sites provide the eligibility criteria, instructions on how to enroll, and other helpful information. Family Care Registration  and Family Care Information  

NJ Parent Link: NJ Parent Link is a website that provides answers to many questions of parents regarding their children with special health care needs as well as government funded family support services. It also provides various support hotlines for parents. Parent Link

New Jersey Parents’ Caucus (NJPC): The NJPC is a family driven organization for parents and children of all backgrounds and challenges. They provide resources as well as parent support groups for raising a child with emotional, behavioral, and mental health needs. New Jersey Parents’ Caucus

Through the Looking Glass (TLG): TLG is an organization built to “provide and encourage respectful and empowering services- guided by personal disability experience and disability culture- for families that have children, parents, or grandparents with disability or medical issues”. They provide spaces for families to meet one another, Early Head Start, mental health professionals on staff, and other disability services. Through the Looking Glass

The Arc: The Arc provides resources for parents of children with autism, cerebral palsy, spina bifida, ADD, epilepsy, Down syndrome, and more. It also provides resources for community involvement, child development, individuals with disabilities, and child-care services. The Arc

New Jersey Council on Developmental Disabilities (NJCDD): This organization provides a space for families, advocates, and agencies to work together on advancing the rights and opportunities of people living with developmental disabilities in New Jersey. They also work to empower the community and people with developmental and intellectual disabilities to all participate equally in the community. NJ Council on Developmental Disabilities

Meet the NYMAC NJ Team

Genetics Clinics in NJ

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