Family’s future hinges on state budget decisions

• Family time

Denise Maki sits with her son Mason as he watches a video. Mason, 14, has cerebral palsy. (Bulletin photo by Patricia Drey Busse)

Talk about it

When Denise Maki learned about a state grant that would allow her to quit work and take care of her son, who has cerebral palsy, she was reluctant to apply for it.

“I’ve worked my whole life, so staying at home was kind of an odd thing for me to consider, but I said OK, we’ll give it a shot,” said Maki, a Cottage Grove resident.

That was in 2001, and since then her son Mason, now 14, has had the “healthiest years of his life,” she said.

That’s why talk of state budget cuts stirs up fear in Maki about her family’s future, she said. Maki was “blindsided” in 2003, when the state reduced the family’s grant payment by $600 per month, and so Maki is nervous about what could happen now that the state is facing its largest deficit in history, she said.

“I’m afraid that no one’s going to listen to me,” she said.

The governor’s current budget proposal contains a 3 percent cut to the program, but if the projected budget deficit increases, as it is expected to in the February budget forecast, that could change.

A rare survivor

Denise and Rick Maki were 23 when Mason, their first child, was born. When they took him home from the hospital for the first time, they had no idea anything was wrong with him, Maki said.

Two days later, he stopped breathing. Maki got him breathing again and he went to the hospital in Duluth, where they lived at the time. They waited for eight hours as Mason underwent tests.

“They could not find out what was wrong with him, and he was going downhill fast,” Maki said.

A doctor from Children’s Hospitals and Clinics of Minnesota, who happened to be on rotation in the Duluth hospital, checked Mason’s ammonia level, which is not something that’s usually tested, and discovered that it was toxic.

Doctors found out that Mason had a rare disease that originated in his liver. His body took protein and turned it into ammonia, Maki said. The fatality rate for children with the disease was about 98 percent at the time, and they typically died within three days of birth. Mason’s disease was discovered on the third day.

“(The doctor) knew not to tell us what Mason’s future was, because it wasn’t good,” Maki said.

Doctors from the University of Minnesota flew to Duluth, because they had the medicines — called ammonia scavengers — that needed to be administered immediately. Then they flew Mason to the University of Minnesota Medical Center.

Doctors started him on dialysis to flush out his blood and put him on all the necessary medicines, but by that time the damage had been done to his brain, Maki said.

“I don’t think we knew back then how severe it was going to be and how disabled he was going to be,” Maki said.

Mason is unable to walk, talk, sit up or hold things on his own. He must be fed, changed and bathed. He’s in constant movement.

In 1994, when Mason was six months old, he had a liver transplant, and the family made the move to the Twin Cities to be closer to medical specialists.

As Mason grew, state and federal funds paid for a personal care attendant to take care of him while Rick and Denise worked, but in 2001, when a social worker told them about the Consumer Support Grant Program, they decided to sign up.

Healthier than ever

Before Maki began staying home with Mason, he had been in and out of the hospital for ear and sinus issues and oral surgeries to trim back his gums due to overgrowth that’s caused by medication he takes.

“He was just a sick child — always sick,” she said.

Maki doesn’t know if it’s a coincidence, but in the seven years she’s been home with him, he’s never been checked into the hospital.

She said the family could probably still get by if there’s a small cut to the program, but a major cut would be life changing.

Steve Larson, public policy director for The Arc of Minnesota, said even a 3 percent cut to the program might be too much for some families to endure, and that when inflation is factored in, the loss in income is really higher than 3 percent.

“We will continue to argue that the best investment we can make is to keep people in their family homes and keep people living in their communities,” Larson said. The Arc of Minnesota is a nonprofit organization that advocates for developmentally disabled people.

Larson said the Consumer Support Grant is a very cost-effective program because it can replace more expensive services.

Other programs offered to families like the Makis are partially federally funded, but this particular program is funded entirely by the state. For that reason, Larson said he expects this program to be “scrutinized closely” this budget-cutting season.

Larson said talks of the budget deficit projection increasing by a billion dollars or more have the organization worried that cuts to this program and others could be higher than what is currently proposed.

The Makis, though, are hoping for the best. Maki said she truly doesn’t know what the family would do if the grant is cut so much that she can’t afford to stay home.

“It’s hard to ask the state for help, but there’s no other way we can do it,” Maki said. “We’re not just a number, there’s a face with it.”

Tags: budget cuts, maki, legislature