Maria’s son is a precocious and vibrant 3-year-old living a rich life. Yet he is constantly in transition.
His health needs require his family to work within multiple systems — medical care, behavioral health care, education, human services. For his family, there is always another hurdle to get over, another form to fill out, another referral to an additional provider.
His mother is quick to point out the ways in which the system works. Yet navigating the system is a full-time job.
“What I’ve found is it takes so much of my effort to get the things my son needs. I constantly have to start over,” Maria said. (We have changed her name to protect her family's privacy.)
Maria’s story is not an outlier. While the details may be different, the process of figuring out complex multiple systems for the estimated 341,000 children and youth with special health care needs (CYSHCN) in Colorado stays the same.
And some families and caregivers — particularly those of color, with low incomes, and/or living in rural areas — face additional systemic hurdles in obtaining the care they need.
The Colorado Department of Public Health and Environment contracted with the Colorado Health Institute (CHI) to produce a policy agenda for CYSHCN. A group of committed stakeholders — including families, caregivers, advocates, clinicians, state agency leaders, social service providers, and researchers — came together to develop this common agenda. CHI conducted focus groups, a community forum, and a survey of rural families to inform the agenda.
The result is The ABCs of Health Equity for Children and Youth with Special Health Care Needs.
The report puts Colorado’s challenges in three categories:
- A: Access to medical and non-medical services
- B: Behavioral health care
- C: Coordinating services across systems
The full report can be downloaded from CDPHE by clicking here or on the report cover on this page.