A Few Key Data Points

• The prevalence of North Carolinians with I/DD is 188,124 children and adults based on the North Carolina Council on Developmental Disabilities Five Year Plan, 2017-2021, published in 2016.

• Only a limited number of children and adults with I/DD (approximately 12,500) are served by the Medicaid Innovations Waiver in North Carolina. There is an extensive waiting list for an innovations waiver slot.

• According to a 2012 study adults with IDD experience high rates of chronic health conditions, see illustration. (Hsieh K, Rimmer J, Heller T. Prevalence of falls and risk factors in adults with intellectual disability. American Journal of Intellectual Development Disability, Nov;117(6):442-54)

• Individuals with complex care needs have significantly higher expenses than other Medicaid patients and are at risk of higher costs in their future, according to a 2014 report on Models of Care for High Need, High Cost Patients published by the Commonwealth Fund

• The number of children and adults with I/DD accessing the emergency department has grown significantly to over the last several years.

• Individuals with IDD are treated with psychiatric medications at high rates and often with off-label indications. Matson and Neal, 2009, Psychotropic medication use for challenging behaviors in persons with intellectual disabilities: an overview. Research in Developmental Disabilities 30, 572-86.

• More than 70% of children and adults with I/DD are supported by their families and more than 25,000 adults with I/DD live with caregivers over the age of 65. The Cost of Caregiving Report, published by Dr. Tamar Heller in 2014, Developmental Disabilities 30, 572-86.