Individuals with down syndrome have unique ideas and abilities. The way they process information and perceive the world is distinct — and they thrive with support systems and programs that are tailored to their needs.
To guide you in supporting your child with down syndrome as they grow into adulthood, here is an overview of what you can expect from a support coordination agency.
What Is a Down Syndrome Support Coordinator?
Understanding who is involved with caring for your loved one with down syndrome is the most important priority.
Down syndrome support coordinators serve as your primary point of contact when creating care plans for your loved one. They are there for you to answer any questions or address any problems you’re experiencing to make sure your child’s needs are met.
To do this, down syndrome support coordinators take time to understand your loved one’s specific diagnosis, complete medical history, personal preferences, and other needs. They spend time with you and your family to ensure that the services chosen will help your loved one lead a happy, fulfilling life.
So, what specifically will your support coordinator do for your family – besides be there for you for any need, any time?
ISP Support Coordination for Adults with Down Syndrome
Down syndrome support coordination starts with the Person Centered Planning Tool (PCPT) and continues with the Individualized Service Plan (ISP) – and then actually coordinating and receiving New Jersey Division of Developmental Disabilities (DDD) services.
The PCPT is a discovery tool that support coordinators use to guide the planning process and assist in the development of the ISP.
The ISP is a detailed written plan that includes information about activities, supports, and resources for your loved one with down syndrome. As someone’s needs or goals change, the ISP can be changed as well. The plan typically includes information about:
- Personal preferences
- Medical history/current medical concerns
- Communication preferences
- Dreams and goals
However, down syndrome support coordinators go beyond just filling out paperwork. They establish lifelong relationships with your family and ensure your loved one with down syndrome receives the best care and NJ DDD services possible.
NJ DDD Services & Programs for Down Syndrome
NJ DDD supports are offered by more than 250 agencies and provide a wide variety of Employment Services, Day Services, and Individual/Family Supports. Your down syndrome support coordinator will help select the appropriate services for your loved one according to their unique ISP.
Services include but are not limited to:
- Job placement
- Job development
- Training and systematic instruction
- Benefit support
- Career planning
- Prevocational training
- Community based supports
- Individual supports
- Community inclusion services
- Day habilitation
- Assistive technology
- Behavioral management
- Occupational therapy
- Vehicle modifications
For additional information about caring for your loved one with down syndrome in New Jersey, here are more resources:
- The Down Syndrome Association of Central New Jersey (DSACNJ)
- Down Syndrome Support Groups for Families in New Jersey
- The Jersey Shore Down Syndrome Association
- NJ DDD Resource Catalog
At Skylands, we serve all developmental disabilities. This detailed description about down syndrome support coordination is meant to add insight to our services. Learn more about what we do for families, here.