Kory cares for his 6-year-old son, Asher, who lives with spinal muscular atrophy type 1. He has a trach, a G-tube, and sleeps with a ventilator at night. He is able to move around on his own with mobility devices but needs help to and from those devices. When Kory and his wife realized how much hands-on care Asher would need, Kory left his job to become full-time caregiver, care coordinator, and household manager.
Caring for Asher has been a rollercoaster, with periods of intensity. The family’s goal is to make sure Asher can be as independent as possible, now, and in the future. The HCBS Medicaid waiver Asher receives allows him these opportunities. During the day, personal assistants (PAs) available through Missouri’s self-directed program act as “Asher’s second pair of hands.” They help him get toys, move around the house, and eat.
Medicaid also affords Asher a nursing team, which Korzry uses at night, as Asher sleeps on a ventilator and needs to be watched while he sleeps. Having these nurses means the family can get more sleep and be more present in Asher’s and their other children’s lives.
Medicaid helps keep the family together. The PAs will help Asher get ready to go to his sibling’s soccer games and take him out into the community. And if Asher is tired, he can stay home with his PA, allowing his siblings the ability to still go to their soccer game while Kory gets a little respite. The anxiety reduction and peace of mind this provides to Kory is irreplaceable.
Asher, nor his family, would not be as strong or stable as he is today without the home and community supports provided through Medicaid. They have improved his life tremendously. If Medicaid were to be cut, Asher would lose these benefits; and in a worst-case scenario, he would be institutionalized or die. The family would be financially destroyed trying to care for Asher, with less attention paid to his siblings, and a strain on Kory’s marriage and ability to parent. Medicaid is the only way they can afford to receive support in their home for Asher’s care. It is imperative to their lives.
“If we lost our waiver, we lose everything…we’d be bankrupt in two years trying to provide the level of care that is required for my child.”
“If Medicaid were cut, it would be financially devastating. It would be as a family devastating. I think we would probably have a complete lifestyle change. We’d probably have a lot of debt.”