How people with disabilities could bear the burden of Medicaid funding cuts

Amna Nawaz:

President Trump's massive tax and funding bill, known as the One Big Beautiful Bill, was passed into law last summer. And according to the nonpartisan Congressional Budget Office, it will slash more than a trillion dollars in federal spending from Medicaid and the Children's Health Insurance Program by 2034.

Senior correspondent Judy Woodruff examines what those cuts could mean for home and community care providers who serve adults with special needs. It's part of her ongoing series Disability Reframed.

Judy Woodruff:

Sidikie Kamara's mornings are often filled with fist bumps and high-fives.

Sidikie Kamara, President, Bright Center:

What's the plan for today?

Judy Woodruff:

He's the president of Bright Center, a day program for special needs adults in Manassas, Virginia.

Sidikie Kamara:

So this is our main sanctuary. This is where we do a lot of our activities.

Judy Woodruff:

Five days a week, the center provides education and a host of activities for participants like exercise class, arts and crafts, and meditation.

In 2014, Kamara started the center with his wife, Naomi (ph), who was born with sickle cell anemia. At the time, she told him she'd always dreamed of creating a center like this.

Sidikie Kamara:

So when she came to me with that idea, at first, I was like, why do you want to do that?

(Laughter)

Sidikie Kamara:

But then after her explaining to me, it's her passion. She wants to help. She wants to give back to the community. She wants to make a difference.

Judy Woodruff:

Kamara says, by 2021, he was working three jobs to help that vision become a reality. And Bright Center moved to a larger building, so they could help more special needs adults. But then his wife's condition took a turn for the worse.

Sidikie Kamara:

June 3 was like the worst day of my life, the worst phone call of my life. Even to this day, I can picture it.

Judy Woodruff:

His wife's doctor had called to tell him that she had died unexpectedly while in the hospital, leaving Kamara with two young children.

Sidikie Kamara:

I wasn't even able to function for at least a month-and-a-half, because I didn't even know what to do, because it's like she was everything. And I'm kind of like, I can't -- I can't do this without her.

You got 10 plus eight minus five. What is that?

Judy Woodruff:

But, today, more than four years later, Kamara says he is still committed to keeping his late wife's dream alive for people like Imani Bush, who has an intellectual disability.

What kinds of things do you do when you're here?

Imani Bush, Participant, Bright Center:

What kinds of things? Well, I like to color. I like to do meditation. I like to sleep during meditation. I like to watch movies. I like to just hang out with all my friends.

Judy Woodruff:

In 2020, Bright Center was serving nearly 30 special needs adults. But once the pandemic hit and forced Kamara to close for about four months.

Woman:

Good job, Francisco.

Judy Woodruff:

... he says it's been a steady decline in enrollment.

Today, just 14 individuals regularly attend. All of them pay with Virginia Medicaid waivers, which allow for care outside of institutions. And while the bulk of the cuts to Medicaid aren't expected to kick in until next year, states, which administer the federal funds, are bracing to lose more than $900 billion over the next decade.

Alice Burns, KFF:

This is the single biggest rollback in federal support for health care that we have ever seen. And people with disabilities are much more likely to rely on programs like Medicaid than people without disabilities. Even though the bill did not directly cut their services, it's highly unlikely that there won't be some effects.

Judy Woodruff:

Alice Burns studies Medicaid and the uninsured for KFF, an independent health research group. She says Virginia is expected to lose nearly 20 percent of its federal Medicaid funding by 2034, and that day programs like Bright Center could be especially vulnerable.

Alice Burns:

With this level of a funding cut, states are going to have to make some tough choices about how to deal with the loss of federal funds. And we know that home and community care for people with disabilities is a significant source of Medicaid funding. And almost all the services are optional for states to cover.

Robert F. Kennedy Jr., U.S. Health and Human Services Secretary: There's no cuts to Medicaid. There's simply restrictions in the growth of Medicaid over the next decade.

Judy Woodruff:

The Trump administration has repeatedly said there would be no cuts to Medicaid and that it's committed to rooting out waste, fraud and abuse in the program.

The Department of Health and Human Services also provided the "News Hour" with this statement, which reads in part: "The One Big Beautiful Bill removes quote illegal immigrants from eligibility, implements work requirements for able-bodied adults and safeguards Medicaid for the vulnerable populations it was created to serve, pregnant women, children, low-income seniors, people with disabilities and struggling families."

But Laurie Sills is worried about what those changes will mean for her 28-year-old son, Nicholas.

Laurie Sills, Mother of Nicholas Sills: Quite frankly, Nicholas, he's a wonderful kid.He really is. But he needs some support in just about everything he does.

Judy Woodruff:

As a young boy, Nicholas was diagnosed with cerebral palsy and then autism. He's been coming to Bright Center since 2019.

Laurie Sills:

He's here with people his own age. He's here with people that he is involved with. He's got staff that cares for him and he loves the staff here. So it's a place that I know that he's comfortable coming to and that I'm comfortable bringing him to every day. So it means a lot to me.

Can you scoot over a little bit more?

Judy Woodruff:

Sills says Bright Center is the only nearby day program that accepts the Virginia Medicaid waiver she relies on to pay for these services. And without the center, she'd be forced, she says, to shoulder even more of her son's round-the-clock care.

Laurie Sills:

He's never left alone. He likes to go into the kitchen and he will press buttons. He will go to the stove. I don't in general have babysitters. I don't have any family in the area. So I really don't have any other care for him but me right now.

Judy Woodruff:

It's a common story for parents at Bright Center, says Sidikie Kamara.

Sidikie Kamara:

Once they graduate from high school, it's kind of like the state kind of just washes their hands. It's kind of like you're on your own now. So that's where we come in.

Judy Woodruff:

Virginia's Medicaid program currently reimburses Bright Center $69 per student per day. But Kamara says that's barely enough to keep going. And while he's already relying on donations and his own savings to stay open, it's what could come next that worries him most.

We're at a moment now where the federal government is making some changes.

Sidikie Kamara:

Right.

Judy Woodruff:

How is that affecting what your outlook is?

Sidikie Kamara:

It will affect a lot of the families and it will affect us as a facility, because then we may end up losing the small students that we have now.

Judy Woodruff:

For parents like Laurie Sills, she's already feeling the impact of budget cuts. She says, last fall, the state reduced the number of hours she will be reimbursed as her son's primary caregiver going forward.

Laurie Sills:

I'm sure there is some waste, fraud and abuse. I'm sure there is throughout the system, but every case is not waste, fraud and abuse. Some individuals really need the care. and, quite frankly, that's my son that really does need the care.

Judy Woodruff:

Care that could become even harder to find for so many families across the country.

For the "PBS News Hour" I'm Judy Woodruff in Manassas, Virginia.