Fight over Medicaid for special needs goes beyond politics for Coast woman

June 29--There is a side to the Medicaid debate that transcends party politics.

On that side is Donna Brewer, a full-time mom and part-time community journalist in rural Jackson County not far from Vancleave, and primary caregiver for her daughter Hannah. Brewer is fighting to change the Medicaid waiver program, not as much for her daughter who has Down syndrome, but for all developmentally disabled people in South Mississippi. Medicaid has been getting a lot of coverage lately because of cuts at the state level and proposed cuts in President Donald Trump's budget and the Senate Republican's health care plan.

Brewer said the waiver program, which will be affected by those cuts, but "is already bad," is getting lost in the noisy political battle.

"People are trying to play party politics with these subjects and issues," she said. "The point is, it's been bad for people in this state, no matter what the case may be. We are not getting the proper amount of funding to take care of the needs that the law says people with intellectual and physical disability are allowed to receive under these federal and state policies."

In Hannah's case, that would mean a personal assistant to help her become a contributing member of society, a role her mother plays. She takes Hannah to and from work at Chili's in Guflport, where she sorts and wraps silverware.

A waiver, Donna Brewer said, would expand Hannah's opportunities.

"I call it a paid buddy system," she said, "where a paid employee is hired through, in our area, one of three service providers and they come and can take the adult on community outings, take them shopping."

What is a waiver?

Some people probably last heard about the waiver program during a "die in" at Senate Majority Leader Mitch McConnell's office, where Capitol police were shown removing wheelchair-bound people from the hallway. Medium.com took that opportunity to explain the intent of the Medicaid waivers, a "set of Medicaid services that many seniors and people with disabilities rely upon to live independently."

Those services help keep people out of nursing homes and other institutions and allows them to live at home. As Medium points out, states are required to pay for nursing home care, but at-home care is optional. In Mississippi, there are anywhere from 1,500 to 2,000 people on the waiting list for the waiver program.

The Brewer family put Hannah on the waiting list when she was 4 years old. She never got on the program and eventually her parents decided to wait until Hannah was 18 and out of school to renew the push to get a Medicaid waiver for her. Earlier this year, they thought they had succeeded. State budget cuts this spring, though, caused Hannah to lose her eligibility again.

"It's been a long-standing problem with the way the waiver services are delivered," she said. "To get those home and community services, you have to be qualified for Medicaid."

Private insurance has been no help, she said.

"We've been blessed enough to have private insurance," she said. "We do still have Hannah on our insurance. But we can't go, for instance, to REM Mississippi, a Medicaid service provider. I can't go to REM and say I'd like to sign my daughter up for your direct care program and here's my Anthem Blue Cross Insurance. It doesn't work like that. It's only delivered through Medicaid. And that's another way the insurance companies are getting off scot-free."

Help for others

Because not everyone has a caregiver who can stay home full-time and some special needs young adults don't have the same degree of independence as Hannah, Donna Brewer started a support group on Facebook, an offshoot of a social media thread she started a couple of years ago.

It's a thread full of stories similar to the Brewers. One family was planning to move to Mississippi and had a child on the program in another state. That wouldn't automatically transfer to Mississippi, Brewer told the child's mother.

"And I had to tell her, I hate to be the doom and gloom truth-teller for you, but this is what has happened in our state," she said. "And I told her briefly the story of my own daughter and how things have been going and she was devastated."

Brewer said that woman has a much greater need for help with her son.

"He's wheelchair-bound," she said. "And I had to tell her, 'If you're looking to get those needs met under the waiver program, you're in a sad situation.'"

Moving out

Holly Fedele of St. Martin has had enough. Her 8-year-old son, who also has Down syndrome, has been on the waiver list for years. She had to fight to get her son included with school activities such as music outside the special education classroom where he spends most of his time.

"I am looking to move out of the state of Mississippi," she said. She's been consulting a list of states that offer the most services for people with intellectual disabilities. The United Cerebral Palsy "Case for Inclusion" rates Mississippi 51st, a rank it's held since 2007, because of the "small portion of people and resources dedicated to those in small or home-like settings.

She's looking toward the day her son leaves school and could benefit from the waiver program.

"They would help him find work," she said. "Also, there is respite care. Say I'm still taking care of him when he's 18, which I fully expect to do, he could go there a couple of hours a day and there would be activities for him, so I could have a break from being his caregiver."

She doubts there will be waivers in Mississippi, if anywhere, when he's 18, though.

"I just know the other states that are doing much better are more progressive," Fedele, a Louisiana native, said. "I just earned my master's degree in social work and we're looking at Colorado and Ohio. They are two states that have been on the Best 10 list for awhile now."

Paul Hampton: 228-284-7296, @JPaulHampton

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