Brain injury survivor turns advocate

Robert Johnson, 39, from Beacon Falls is among many brain injury survivors in Connecticut who are worried about potential changes to a federally-funded state program for people with acquired brain injuries. Johnson suffered a traumatic brain injury in July 1998. He now paints, writes, acts and has a part-time job. –RA ARCHIVE

Robert Johnson, 39, from Beacon Falls is among many brain injury survivors in Connecticut who are worried about potential changes to a federally-funded state program for people with acquired brain injuries. Johnson suffered a traumatic brain injury in July 1998. He now paints, writes, acts and has a part-time job. –RA ARCHIVE

BEACON FALLS — Robert Johnson survived a brain injury. He relearned how to talk. He suffered through emotional outbursts over which he had no control, sometimes crawling onto his mother’s lap for comfort.

Johnson, 39, faces a new fear: proposed changes and reductions to a federal program that he said has made his recovery and progress possible.

It’s called the Acquired Brain Injury Medicaid Waiver, which pays for services and care that allow those with brain injuries to remain at home, rather in a group or nursing home. Advocates say essential elements of those services, including life skills trainers, will be lost as a result of the state’s proposed changes.

Currently, 370 people in Connecticut benefit from the program, and another 50 have their names on a list that carries a more than three-year wait.

Johnson and more than 200 brain injury survivors, family members and advocates earlier this year addressed legislators in Hartford, lobbying to keep the programs which they say sustain them.

State health officials insist no one will lose services, but the program is changing, they said.

The state Department of Social Services has administered the waiver program since 1999. The department, seeking to save the state money, wants to change what amounts to admission rules to allow more people whose care currently is 100 percent state-funded into the program Johnson uses. By doing so, the federal government would pick up half the costs of those additional patients.

David Dearborn, department spokesman, said there is a projected savings of $6 million a year by adding individuals who are served by the Department of Mental Health and Addiction Services onto the newly defined waiver. The state plans to do this by creating a second waiver program — with different rules but the same services, plus additional services — and leaving existing patients’ care untouched.

The brain injury survivors and family members who packed a Legislative Office Building hearing room in late January were not convinced. Some choked up, tears in their eyes, as they told strangers how their son or daughter has improved or is surviving under this program. Johnson, in a T-shirt and jeans, sat with his parents, Kathy and Wayne Johnson of Oxford, choosing to let his mother, his chief advocate, speak.

“The reason my son has the opportunity he has today is because my husband and I — but especially me and with my big mouth — have fought our hearts out to help him to have a quality of life,” his mother, a former first selectman of Oxford, said to the crowd. “And for someone to notice that he has value, just like everyone else in this room has value, no matter where they are in a brain injury.”

Members of a grass-roots organization called Connecticut Brain Injury Support Network want the state to improve and expand the current program, rather than create a second program with new rules. It contends the new program would kill off the current one, fails to address the waiting list, forces people to languish in nursing homes and thwarts rehabilitation.

For Johnson, a large part of the waiver program on which he depends are life skills trainers, particularly the time spent two days a week with Doug Dowling. He meets with different coaches the other three days a week.

In his living room on a recent Friday morning, Johnson lay paintings he’d done in acrylic black, white and red against a wall. His hands in his pockets, Johnson watched as Dowling pointed to one of his contemporary abstract works. Eerie, heavily darkened eyes peer from the canvas.

“So I’m looking at this painting,” said Dowling, looking up at Johnson. “What is the first thing that I see — these eyes. What you just did here, and I like a lot, is these eyes.”

He asked Johnson to grab a canvas with only plaster or gesso, a type of primer, and talk about what he is trying to do.

“So I’m just playing, well, not exactly playing,” Johnson said. “I’m doing the gesso around and like the twist and the little dots. And putting more gesso there.”

This may sound like a typical brainstorming session between artists, but Dowling works for an agency that is paid through the waiver program.

After his injury, suffered when Johnson was thrown onto Route 8 in a traffic accident, he couldn’t talk, never mind hold a conversation.

He can’t remember the crash, or even the months after he awoke from a coma 10 days after he was thrown from a truck onto Route 8. His head took the brunt of the blow.

“My life before the accident is shaky,” Johnson said. “I cannot say I know all this, when, how, who. I had to relearn who people were or who people are. When I see them, it’s like … hmmm. Some I remember, but my friends — I know their faces but who they are and why I know them is the opposite story.”

His mother helped her son fill in the pieces.

On a weekend night in July 1998, Johnson, then 23, his cousin, Nick Martin Jr., and friends went to a stag party in the Valley and then to a bar in Bridgeport. About 1 or 2 a.m. Saturday, they were returning home in a pickup truck that collided with a disabled vehicle left without hazard lights flashing on Route 8.

Johnson and his cousin had been riding in the truck bed. Both were thrown to the highway. Johnson’s head smacked the pavement.

Although Johnson can’t remember when he awoke, his mother can. His cousin came to see him for the first time. “He put out his hand and said something like, ‘Hey, bro,’ ” she said.

“When he opened his eyes at the sound of Nick’s voice, I went crazy in the room,” his mother said. “I started screaming, ‘Thank you, Jesus.’ I was running around the room like a maniac. The nurses ran down. They thought I was a lunatic.”

Barely able to do anything other than open and close his eyes, Johnson entered Gaylord Hospital in Wallingford. His right side was paralyzed. He had a tracheotomy and two feeding tubes.

After seven months at Gaylord, Johnson came to live with his parents in Oxford. He walked fairly well and ate on his own, but he had trouble retrieving words. His mother said his speech was like a person who suffered a stroke. He would need a towel, but say “road.”

He reverted back to his childhood. He would want to sit on his mother’s lap and to be held. Sometimes, he thought he was still in high school, or he’d explode with outbursts he could not control.

Before the accident, Johnson played in a rock band that toured in the area, wrote sketches and music for a comedy TV show called “Eat at Joe’s” and acted in Shakespearean plays. A 1993 Seymour High School graduate, Johnson worked at Brody Printing Co. in Bridgeport as a binder.

Fifteen years later, Dowling encourages Johnson to achieve his goals such as creating his series of paintings called “Brothers and Sisters.”

He also works to strengthen cognitive skills for Johnson. The day they met, Dowling recalls, Johnson was on the floor reading a dictionary.

Dowling said he lets Johnson figure out what words he wants to say. He doesn’t give him the answer. The good news is the word is there, he said.

“And then, we just work it back and forth,” Dowling said. “He loves doing it and I love doing it. We both love words.”

The right side of Johnson’s mouth droops slightly. He sometimes talks slowly or with pauses. He still struggles with short-term memory loss, and can become almost paralyzed with making decisions, Dowling said. He fights it when his body wants to curl into a fetal position, a lingering response to the brain damage.

But he’s lived on his own since 2007, paying rent to his parents who own the home. He drives. He meets with trainers 8 a.m. Monday through Friday, and spends weekends on his own, with no support staff.

He’s sold two paintings at a gallery in Boston, and hopes to land his Brothers and Sisters paintings in a gallery in New York. He also is writing a children’s book.

About a year ago, Johnson started to become aware he was injured. This is common for brain injury survivors — to not realize the extent or impact of their injuries. To realize this means he is improving, his mother said.

Johnson said he cannot tell people to wait and say it will get better, because sometimes, with a brain injury, it does not.

“I am just lucky that I’m able to continue my paintings,” he said.

The state’s proposed second waiver program has been sent to the Legislature for review. It also would require federal approval.