Several decades ago, Evan Nodvin's life probably would have looked quite different.
Nodvin has his own apartment just outside Atlanta, in Sandy Springs, Ga., which he shares with a roommate, and a job at a local community fitness center. He also has Down syndrome.
"I give out towels, and put weights away, and make sure people are safe," the 38-year-old says.
To get to and from work, Nodvin relies on rides from people who are hired to help him. He also has a counselor to help him do daily chores like grocery shopping, cleaning and cooking.
"My favorite thing to cook on Wednesdays — I like to cook turkey patties once a week," he says. "And on Thursdays I make fish, and other days, I make other good stuff like spaghetti."
Nodvin can live independently because of these services that are covered in Georgia under Medicaid, the government health insurance for people with disabilities and the poor. According to the Georgia Department of Community Health, the state spends about 6 percent of its Medicaid budget on services for people with developmental disabilities.
When Congress started to talk about making big changes to Medicaid in the health care bill in March, Nodvin went to Washington, D.C., with a group of advocates to lobby. He read a speech there, which he recites in his living room.
"As you can see, my life is very full. I work, live and play in the community. My dream is to continue this healthy and useful life. Thank you," he reads.
But that dream is uncertain. The Congressional Budget Office estimates the proposed cuts to Medicaid in the Affordable Care Act repeal bill that passed the House of Representatives amounts to $834 billion over 10 years. In Georgia, more than half of the state's Medicaid dollars go to the elderly or people with disabilities, according to the Georgia Department of Community Health.
In the House-passed bill, the federal government would give states a fixed amount of money based on what they've been spending, says Bill Custer, a professor of health administration at Georgia State University.
"In a state like Georgia, the impact would be immediate and fairly severe over time," he says.
According to the Kaiser Family Foundation, Georgia ranked the second lowest in Medicaid spending per enrollee in fiscal year 2011. Georgia currently gets about two federal dollars for every one dollar the state puts in, but the new plan would give states a capped amount of funding for Medicaid.
Custer said Medicaid in Georgia might be okay in the beginning, but as health care costs rise, states will increasingly have to shoulder the burden.
"That means states are going to have to either find the money to maintain the program or shrink the program, either by covering fewer services, or covering fewer people, or both," he says.
That worries Eric Jacobson, executive director of the Georgia Council on Developmental Disabilities, a state advocacy group.
"Medicaid is the lifeline for people with disabilities," he says.
Jacobson says the community support services like those Nodvin gets under Medicaid are considered optional by states.
"Those are the kinds of services that we hope won't get cut, but because of the reduction in funds, [they] might be the first on the chopping block," he says.
He said services are already limited. According to the state Department of Community Health, nearly 9,000 people with intellectual or developmental disabilities are on a waiting list to get help in order to live on their own or in their communities.
Jacobson worries if there are budget cuts, more people might be forced into institutions.
"The way I look at it, institutionalization for people with developmental disabilities — it's kind of like sending you to jail for no crime," he says. "You can't go out. I remember talking to somebody and he said, 'I want to take my girlfriend to the movies. I can't take my girlfriend to the movies because I'm not allowed to go off campus.' "
Jacobson says there's been a movement over the last several decades to allow people with disabilities to live in their communities. He says it's about quality of life, and can save the state a lot of money.
In his Sandy Springs apartment, Evan Nodvin tabs through his CD collection. He has a Beatles poster hanging up in his room.
"I have Michael Jackson, Beatles, whatever... I got more of them here," he says.
He's lived on his own for the last 16 years, not long after graduating high school. He has a job, a girlfriend, an apartment. And as he said in his speech in D.C.: "I am able to be independent because I get help from my Medicaid waiver in my state of Georgia."
That's why Nodvin and his family will be watching what happens next in Washington, D.C.
This story is part of a reporting partnership with NPR, WABE and Kaiser Health News.
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