Down Syndrome Advocacy

Children's Specialized Hospital
Down Syndrome Center of Excellence

Children’s Specialized Hospital prioritizes the well-being of all people. Through various programs and resources available to our patients and families, we’re committed to supporting a community where everyone can thrive.

Advocacy

Equity

We believe in equitable access in community resources. Before a visit, families are invited to complete a screener for social drivers of health, so that our team can offer individualized support. We work to address food insecurity, transportation-related barriers to care, and concerns about housing habitability. We are lucky to work with Legal Services of New Jersey through our its Legal Assistance to Medical Patients (LAMP) project.

Additionally, we work with families to explore programs such as the Personal Preference Program (PPP), case management services through their insurance provider, secondary Medicaid coverage for those patients who qualify outside of income-based requirements, and NJ Systems of Care (PerformCare) Intellectual and Developmental Disabilities Services.

Safety

Some children with developmental disabilities struggle to recognize danger and may elope or engage in other unsafe behavior. Our team connects families with resources to address these concerns. Additionally, Children’s Specialized Hospital has an Online Safety Center with helpful resources for patients and their caregivers.

Transition

Some adults with Down syndrome work and live semi-independently, while others require more assistance. We assess transition readiness and support our teen patients and their families in preparing for adult life by addressing various aspects of this process, including:

  • Decision-making options
  • Supplemental Security Income (SSI) application
  • Developmental Disabilities Services application
  • Information about post-secondary education programs, supported employment
  • Connection to your local Center for Independent Living

Inclusion

Everyone benefits from inclusive communities. Our team will support each family’s inclusion goals in various settings, including:

  • Education
  • Recreation
  • Representation

Caregiver Education and Support

Raising a child with Down syndrome can feel isolating at times. Our Down Syndrome Center of Excellence team loves to connect families with local and national organizations, including:

National organizations

Local organizations

Additionally, we connect families with organizations that provide support in specific areas, including: