Caiden and Teresa

Caiden is a cheerful 10-year-old who lives with his mom, dad and three siblings in Huntington, West Virginia. Caiden has profound autism and a diagnosis of mild intellectual disability, along with a number of underlying medical conditions secondary to his autism, including epilepsy, asthma and chronic allergies. Caiden is non-verbal and requires 24-hour-a-day care as he is a safety risk and also a flight risk. Caiden’s mom, Teresa, shared with us the vital importance of his Medicaid coverage in providing the wide range of intensive services that allow him to attend public school and to receive afterschool care in his home. Teresa explains that caring for Caiden is "like caring for an 18-month-old every day.”

Caiden attends his local school with extensive special needs accommodations including an in-classroom aide highly trained in care for children with severe autism. Medicaid also funds the programs that provide his in-school speech therapy and occupational therapy, as well as transportation to and from school. If Medicaid funding were to be cut back, he would not be eligible to receive these services at school. Teresa works full-time with a long daily commute that would make driving him to and from school unworkable. Because of Caiden’s very significant care needs, no afterschool program or daycare can accommodate him. He receives afternoon care at home from caregivers funded by Medicaid. Caiden has a personal aide to assist with his activities of daily living, as well as home visits from a social services agency provider who works with him on developing skills for more independent living.

Teresa explains her worries about the current proposals to drastically reduce Medicaid funding that she is hearing about: “If we didn’t have the benefit of Medicaid services provided to Caiden at school and in our home, I would have to quit my full-time job. Since daycare and afterschool programs would not take him, there is no question that I would not be able to continue working outside my home. It would be highly detrimental to my family if Medicaid does not continue to provide the services Caiden relies on. It would really harm our family of six with the loss of income if I had to quit my job to be home with him. The biggest issue for me is knowing that Caiden is cared for by competent and compassionate aides who are trained to handle his medical, physical and behavioral needs. This is what allows me to be a productive citizen and taxpayer, able to thrive in my employment and contribute to society.” 

“Another factor is that our family is a unit. We have three other kids, and Caiden does not tolerate going to many locations outside the home. Knowing he is well cared for allows my husband and me the ability to help our other children with their activities, as well. That’s a huge relief for us. Receiving these services allows our family to support Caiden and grow and be productive.”

The Center for Consumer Engagement in Health Innovation works to promote innovative models of care that support the full range of physical, behavioral and psycho-social needs in an integrated manner for vulnerable populations, including children and youth with special health care needs.

Consumer Stories

The needs and experiences of health care consumers — particularly people in marginalized or low-income communities or with complex needs and significant disabilities — are the driving force of the Center’s work. Documenting and amplifying patients’ real-life health care situations, in their own words, is central to our ability to create a health care system that works for all of us. Click below for stories from some of the consumers we work with.