Mom of Four Says Medicaid is Necessary to Afford Son’s Feeding Supplies: ‘My Son Didn’t Ask to be This Way’

It was heartbreaking for Lori Ann to hear her beloved son say, “If I weren’t here, you wouldn’t have to worry.” 

Although her son, Alex, 32, has multiple disabilities, Lori said he understands much of what’s going on around him. Because she has concerns about ongoing Medicaid funding, she tries to conserve the medical supplies he needs every day for his G-tube feeding, which cost more than $3,350 each month. Sensing her concern prompted his shattering statement. 

Lori is not only her son’s Home Provider through Living Innovations, a service of Mosaic in Maine, she is also a nurse practitioner who works with palliative patients.

She said she worries about the Medicaid funding her son’s services depend on and the Medicaid funding for patients she serves.

She’s already seen the results of funding uncertainty with a patient having gone to pick up a prescription only to learn it is no longer funded–and the person cannot afford it. 

Alex started benefiting from Medicaid and other services for people with disabilities when he was quite young. 

“He was born a pretty sick baby,” she said. “He has always needed some kind of nursing care.”

As a single parent raising four children, Lori knows she could not have provided the care he needed without assistance. At two-and-a-half, Alex started in a child development program, and he later benefited from the assistance the school district provided. 

“Alex would not be at his level if he didn’t have those supports early on,” she said. “He struggled through school, grammar and middle, but did great in high school. He had all of those wonderful supports at the time.” Those supports are provided through a mix of local, state and federal funding in the United States. 

As her children aged, she went back to school, first to become a nurse’s aide, then eventually a nurse practitioner. It became essential, because of the increased care needs when he could no longer take anything in by mouth which followed swallowing troubles when he was 21.

“I needed to become a nurse practitioner to manage his G-tube,” she said. “The G-tube needs to be changed regularly. I thought I might as well get the degree and take care of all his needs at home.” 

Alex does understand a lot, she said, but he has multiple diagnoses. In addition to an intellectual disability, he takes psychiatric medication to help with severe depression, is sometimes suicidal, has adjustment disorder and autism. 

“He is able to do most of his own care,” she said. “He’s capable, but when things go wrong–if he has a cold, if he doesn’t feel good, if he has mental health issues–everything stops. He completely shuts down and needs cueing to get through the moment. Every day has to be the same. If something changes that, he can become unable to function.”

Home support staff come in daily to administer Alex’s afternoon medications and take him out into the community while Lori works. He can be on his own for up to eight hours a day, if needed. 

“I am very fortunate that we have the support system that we need, especially since my other children are all out of state,” she said.

Lori’s and Alex’s story shows the challenges families who benefit from Medicaid face. The choice becomes whether you work to support yourself and your family’s needs with the assistance of Medicaid or not work, live in near poverty and take care of your loved one as best you are able with what little you have. 

“If I had to pay $3,350 a month for him to get the nutrition he needs, I can’t afford that. I don’t know who can.”

“My son didn’t ask to be this way. If my son could have a life like my other son who will soon get married, he would want that.”