Susan Root often works 16-hour days as she makes sure the machines that feed her daughter and pump oxygen into her lungs are working. She also manages her daughter’s seizures and handles all the necessities that Amy can’t do for herself, such as bathing.

She’d prefer to have help, but no one is lining up to care for a medically complex 24-year-old at the rates Medicaid pays. So Root has made it work.

But making it work by stepping in personally may not be a viable option anymore if the state goes through with a policy change that would pay caregivers for only 56 hours of care per patient in a week — or about half of what she often puts in now.

“I do it full time, whether I get paid or I don’t get paid,” Root said, “because (Amy) has to have the care.”

The change to a 56-hour limit was

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