Nash is a four-year-old diagnosed with acute flaccid myelitis, a rare spinal cord condition that leaves him paralyzed from the neck down. He is dependent on a trach tube to breathe and a G-button to feed. Jordan is not only his mother but his full-time caregiver.
All of Nash’s care, such as medical supplies and outpatient therapies, is provided through a Medicaid HCBS waiver. Jordan also has access to a direct care worker, although Nash’s care is so complex that he needs a licensed registered nurse (RN) to help as well. However RNs have been hard to find, and they are on the waiting list.
While waiting for an RN, Jordan is provided an hourly wage through Medicaid to care for her son. While Jordan used to work a full-time job that allowed her flexible hours, the stress of juggling work and care became too much, and her son will always come first. The stipend Jordan receives allows her to contribute to the family finances. Without it, they would lose their home, as it’s not affordable on a one-income salary.
Nash’s medical complexities also make it impossible to receive respite, although Jordan is hopeful to use it once they have a nurse. Jordan and the family are dependent on the current and future support Medicaid provides. If Medicaid were to be cut, Jordan doesn’t know what she would do – it’s impossible for her to go back to work. If she were to, it would have to be at night when her husband returned home, and she fears she would never see their family.
Medicaid support means Nash is able to be at home with his family, happy, healthy, and safe. It means Jordan is the one able to care for his needs and know he is safe, and to receive the support she needs so she is not caring for him alone. It allows them to keep their home and to live their lives. Without Medicaid, all of these things are in jeopardy.
“There’s just so many things that people don’t see that Medicaid covers behind the scenes, and it just allows my son to be home and happy and healthy, and that’s all us parents want. That’s all we want.”