by Julie Williams-Swiggett, M.Ed.
Youth in North Carolina’s foster care system often face challenges beyond trauma and separation. Many also have undiagnosed or unmet intellectual and developmental disability (I/DD) needs that shape their learning, behavior, and long-term outcomes. I/DD includes conditions such as intellectual disability, autism, Down syndrome, and other developmental differences that appear before adulthood and impact daily functioning. National data shows youth in foster care are two to five times more likely to have I/DD than their peers, highlighting the urgency of early identification and coordinated supports.
Recognizing I/DD in Foster Care
Developmental differences can be difficult to identify when trauma, school disruptions, and inconsistent healthcare mask symptoms. Watching for common “red flags” helps caregivers connect children to needed evaluations. Indicators may include delayed speech, coordination problems, difficulty with self-care, limited social interaction, distress with transitions, or behaviors that appear defiant but actually reflect communication or processing challenges.
For youth with incomplete records, caregivers can focus on current functioning—how the child handles routines, frustration, and problem-solving. Teachers, therapists, and former caregivers can offer valuable information. If concerns emerge, updated developmental or psychological assessments can clarify needs. Local Management Entities/Managed Care Organizations (LME/MCOs) also assist with locating past evaluations.
The CDC’s Learn the Signs. Act Early. materials (cdc.gov/ncbddd/actearly) provide helpful milestone checklists for children from birth to age five and support both foster parents and social workers in monitoring development.
Why Timely Assessment Matters
When children enter foster care, early health screenings may prioritize physical and mental health, leaving developmental evaluations for later. This can delay access to services that make a significant difference. Pediatricians can begin with developmental screenings and refer for further evaluation when milestones or communication raise concerns. Children under three are evaluated through the localCDSA; children three and older can be assessed through the public school system for an IEP or 504 Plan.
LME/MCOs coordinate diagnostic evaluations, determine eligibility for I/DD services, and connect caregivers to specialized providers. Important advocacy questions include:
- Has a developmental or psychological screen been completed?
- Is an IEP evaluation underway?
- Has the LME/MCO reviewed eligibility for I/DD services?
Accessing Medicaid, 1915(i), and Innovations Supports
Understanding Medicaid pathways is essential. The Innovations Waiver provides intensive, long-term I/DD supports, but the waitlist is extremely long—often 10 or more years. Many children qualify but will not receive services immediately. Caseworkers should confirm whether a child is enrolled, on the waitlist, or needs a referral.
To bridge this gap, North Carolina expanded 1915(i) Medicaid services, which do not require a limited slot. Children who meet functional eligibility can access caregiver coaching, skill-building, and community-based supports. For many youth in foster care, 1915(i) offers the fastest route to meaningful help.
Key questions include:
- Is the child on the Innovations waitlist?
- Has the LME/MCO screened for 1915(i)?
- What services can begin right away?
The New Children & Families Specialty Plan
On December 1, 2025, North Carolina launched the Children & Families Specialty Plan (CFSP)—a single statewide Medicaid plan designed specifically for children and youth in foster care, former foster youth up to age 26, and certain adoptive families. The plan integrates physical health, behavioral health, I/DD services, care coordination, and long-term supports under one umbrella. For youth with I/DD, the CFSP aims to reduce gaps in services when placements change, streamline assessments, and ensure better coordination among providers, DSS agencies, and caregivers.
Strengthening Stability and Connection
Youth with I/DD benefit from clear routines, visual supports, predictable transitions, and patient, steady caregiving. Foster families can also lean on the Family Support Network of NC (FSN-NC) for peer mentors and support groups. Social workers can call FSN for information, referral support, and service system navigation.
When caregivers, DSS professionals, LME/MCOs, and Medicaid systems work together—using CDC tools, pursuing both Innovations and 1915(i), and preparing for the new CFSP—youth with I/DD in foster care are far more likely to receive the stable, coordinated supports they need to grow and thrive.
Julie Williams-Swiggett is the Program Coordinator for the Family Support Network of North Carolina. Learn more about the Family Support Network of North Carolina here: fsp.unc.edu
