We hope The Inspiration Lab Podcast’s series on caregiving has had a profound impact on those caring for or affected by children with special needs and/or critical illnesses. On Episode 18, Inspiration Lab founder Stephanie Lanier — mother to a child with special needs who is also medically fragile — and her friend Meredith McCumbee — a senior director at PPD who has a child of her own with special needs and medical complexities — discussed programs, resources, grants, and support for families in these uniquely difficult situations. Below, find a selection of resources Stephanie and Meredith have experienced. Please note that most of these offerings are local or state-specific.
NC HIPP The North Carolina Health Insurance Premium Payment program can provide assistance for private health insurance premiums through your employer if your child has or is eligible for Medicaid.
CAP/C The Community Alternatives Program for Children helps kids who are medically fragile and need institutional care. Once accepted into this program, the child can get home- and community-based care through Medicaid.
Innovations Waiver This is the waitlist we’ve referenced in many podcast episodes – we recommend parents with children with intellectual or developmental disabilities get on it right away.
Triillium Health Resources This managed-care organization handles the implementation of many programs, including the Innovations Waiver.
Victory Junction This is a camp in North Carolina for kids with serious illnesses.
Autism Society The Autism Society of North Carolina provides ABA services for children and their families, as well as camps, programs, and other activities for individuals on the autism spectrum.
Family Support Network The Family Support Network of Eastern North Carolina serves families with children who have special health care needs. They have an advocate program to help families navigate the IEP process that many of our friends have used throughout the years.
TEACCH The Wilmington TEACCH Center provides diagnostic evaluations, treatment planning and implementation, education, consultation, training opportunities, and research related to autism spectrum disorders.
Carolina Institute for Developmental Disabilities UNC’s Carolina Institute for Developmental Disabilities offers services, research, and training for people with developmental disabilities and their families.
Miracle League The Miracle League of Wilmington is an accessible baseball league for children and adults living with disabilities.
Welcome Home Angel Welcome Home Angel facilitates home makeovers for families with kids suffering from significant health issues in order to make living spaces more accessible and functional.
Make-A-Wish Eastern NC The Eastern North Carolina chapter of Make-A-Wish grants wishes for children with critical illnesses. Stephanie’s son, Oliver, was a Make-A-Wish recipient.
Pediatric Feeding Disorder Program UNCW’s Pediatric Feeding Disorder Program provides assessments and treatments for children with feeding problems.
Paws4People This organization, which made an appearance at The Inspiration Lab’s 2018 Conference, trains dogs to be support animals for children with special needs. Be sure to check out Episode 19 of The Inspiration Lab Podcast for more information.
Uniquely Human: A Different Way of Seeing Autism In this book, Dr. Barry M. Prizant emphasizes the importance of trying to understand children affected by autism rather than trying to “fix” them.