In this essential episode of the PLAN|NJ podcast, Executive Director Ellen Nalven and Associate Executive Director Jason Miller explore how public benefits support individuals with significant disabilities.

Joined by special guests Crystal West Edwards, Esq., and Carla Ponn, a parent and PLAN|NJ board member, this robust conversation covers the real-life challenges and strategies families face when navigating support systems like Supplemental Security Income (SSI), Medicaid, and the NJ Division of Developmental Disabilities (DDD). Carla shares her personal story of her son David’s journey from early intervention to group home placement, offering candid insights into the emotional and logistical hurdles of caregiving. Crystal complements this with expert advice, untangling the red tape around guardianship, benefits eligibility, tier classifications, and accessing support. This episode is a roadmap for planning, advocacy, and action with real-life experiences, expert guidance, and actionable tips, which is intended to empower families to plan with a person-centered approach, advocate effectively, and secure lifelong supports for their loved one.

Key Takeaways:

• Start Early: Begin benefit applications (e.g., SSI, Medicaid) at age 18 to ensure services by 21.

• Guardianship May Be Critical: Parents lose legal authority once a child turns 18—plan ahead.

• Plan for the Worst Day: When completing the NJCAT, base responses on an individual’s biggest challenges and challenging behaviors to ensure their proper tier classification.

• Medicaid vs. Medicare: Medicaid covers long-term services, such as group homes and daily living support, which are often not covered by private insurance or Medicare.

• Reassess if Needed: Tier classifications and service budgets can be reassessed if they don’t reflect actual needs.
• Advocacy Is Everything: Whether it’s coordinating care or managing benefits, persistence and support are key.