Disabled Americans Fear What Medicaid Cuts Could Do to Them
Her ileostomy bag needs to be emptied multiple times a day, and the exposed end of her intestine must be inspected. Her body has to be regularly repositioned in her wheelchair so that she won't get sores. Her saliva needs to be suctioned from her mouth to prevent aspiration, and her food and medication must be administered through a gastric tube.
June has rare diseases that affect her intestines and brain. Her parents do what they can for her, but they have jobs and two other children — they can't do it all. What allows June to live at home, go to school and hang out with friends is a Medicaid program in Utah that provides in-home nurses, a type of benefit called home- and community-based care.
That care means she doesn't have to live in a nursing home or other medical institution, said her mother, Courtney Demmitt-Rice.
'We would do anything to keep that from happening,' she said. 'But your body can only give so much.'
Medicaid is best known as a program for low-income people, but it is also a key vehicle by which disabled Americans of varying income levels receive health care that would otherwise be prohibitively expensive. June is one of about 4.5 million Americans who depend specifically on its home- and community-based care services, which often come through specialized programs known as waivers.
That 4.5 million includes many older Americans who are on Medicare too but can't get the home care they need through that. But it also includes many working-age adults, and about 14 percent of the total are 18 or younger, according to the health research group KFF.
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