Thriving at Home: Stories of Medically Fragile Children Benefiting from Minnesota's CAC Medicaid Waiver

The Community Alternative Care (CAC) Waiver in Minnesota is a Medicaid program designed to help individuals with medical disabilities or chronic illnesses receive care in their homes or communities instead of a hospital setting. This waiver provides various services and supports, such as case management, home health aide services, modifications to homes to accommodate disabilities needs and personal care assistance, all tailored to meet the specific needs of each person.

Many of the clients receiving CAC services are children who face complex medical challenges. Some require ventilators, others use tracheostomies or feeding tubes. In decades past, they may have lived full-time in hospitals. Today, they thrive in their own homes. Without the waiver, there would be no other option but acute institutional care.

Many parents of these children are their full-time caregivers, unable to use traditional daycare due to their kids' medical needs. The waiver allows these parents to receive payment for their caregiving—enabling families to remain together and children to be raised in nurturing environments.

These are just a few of the stories of children in our community that benefit from Medicaid and the CAC waiver:

Emma* was born with a severe congenital heart defect, required frequent hospitalization and intensive medical care. Her parents wanted to provide her with a more stable and nurturing environment at home. Through the CAC Waiver, Emma received home health aide services and specialized medical equipment, such as a portable oxygen concentrator. The waiver also covered home modifications to make her home safer and more accessible. With this support, Emma is able to stay at home, attends a local preschool, and enjoy a better quality of life surrounded by her family.

Jenna's* journey in life started as a medically fragile child who required a tracheostomy and a lot of hospital-level medical support to survive. Her family was able to access the CAC waiver to allow Jenna to receive hospital level medical care at home throughout her childhood. While these lifelong medical conditions continue, Jenna's perseverance, combined with the support she receives from the CAC waiver, has allowed her to experience many life milestones. Jenna attended and graduated from college, landed herself a full-time job and purchased her first home.

Ben* was born with severe developmental needs. His daily care includes suctioning his respiratory system, wearing respiratory vest, and having specialized feeding methods. Having electricity is critical to keeping Ben alive. As a result, the CAC waiver helped cover the cost to install a generator to prevent loss of life-sustaining equipment during power outages. Additionally, home renovations including a ceiling lift and bathroom remodel allow the family to safely care for Ben outside of the hospital setting. These one-time renovations allow Ben to life at home, preventing thousands of dollars of costs for full time hospitalization.

*Names have been changed to protect client identity.