"All I ever wanted was to keep him"

McCullar family finds hope with Living Innovations

By Tanya Mitchell, VillageSoup/Waldo County Citizen Reporter
Waldo County Citizen Reporter, week of June 27, 2007

BELFAST — Brenda McCullar knows firsthand that if you want something done right, you have to do it yourself.

For McCullar and her 25-year-old son, Donnie, life has not been easy since they moved to Maine from her home state of Montana six years ago.

McCullar’s troubles began when her husband broached the idea of relocating to Maine in hopes of making a better life for the family. McCullar said things were fine when her husband left ahead of the family to get established, but months later when she followed him to the Pine Tree State, he had started a new life and moved on without his family.

Managing alone

Just like that, McCullar was in a strange place with no friends or family to lean on for support. She had no driver’s license, no car, no job, and was a single mother to Donnie, who is deaf, multiply handicapped and depends on others to assist him with his daily needs.

She was unable to keep up with bills at the home she and her husband had planned to share. She had difficulty staying in one place as the bills mounted.

While struggling to make ends meet, McCullar was also experiencing difficulty finding reliable daytime help for her son through local agencies that provide personal care attendants (PCAs).

“A lot of times, the PCAs didn’t call and they wouldn’t show up, so I would have to call off work,” she remembered. “This happened on a very regular basis over the last five years.”

McCullar has been employed at Belfast Dunkin’ Donuts for the last five years. She credited co-owner Lea MacDonald for being understanding throughout the difficulties she experienced in finding reliable care for Donnie. “She [Lea MacDonald] and her husband are the most unbelievable people on Earth,” she said.

Though her bosses were sympathetic to her plight, McCullar said the instability of her son’s day-to-day care affected the number of hours she could work, making budgeting impossible from week to week.

The more McCullar struggled, the more she considered the reality she had always expected but never wanted to see come to fruition – placing Donnie in a group home setting.

Weighing options

In the meantime, McCullar placed Donnie into the day program at Belfast Industries, keeping him busy and productive and cared for during the day Monday through Friday. The arrangement proved a godsend for McCullar, who approached Carl Goodwin-Moore, Donnie’s individual support coordinator through the Maine Department of Health and Human Services, for suggestions about Donnie’s future placement options.

That’s when McCullar learned of Living Innovations, a program President Neal Ouellette launched in New Hampshire about 10 years ago. It has since grown to eight offices throughout New Hampshire and Maine. The network of private care providers includes the organization’s five-year-old Newport office, where Alaina Flagg, a Living Innovations community living coordinator, is based.

The program provides in-home services for children with disabilities such as autism, cerebral palsy, seizure disorders, Down’s syndrome and other developmental handicaps.

Living Innovations also provides a personal support program for mentally handicapped adults who can live on their own but require weekly assistance with grocery shopping, laundry or other household responsibilities.

The program that most interested McCullar, however, was the shared living service. Through the program, McCullar explained, Donnie would live with an approved home provider. “That’s where Donnie would be live in someone’s home with them, but I would still have a say about his care,” she said. “I would be able to bring him home, and see him when I wanted to, and I could work full time.”

While the arrangement still meant Donnie would not share a home with McCullar, she filled out the necessary paperwork to find a potential home provider for Donnie.

After about a week of waiting to see if she was eligible for the program, McCullar received the best news she’s heard since moving to Maine.

New job, a fresh start

Not only did McCullar learn Donnie was eligible for the program, but she also found out there was a way for her to have the job she’s always wanted – being Donnie’s permanent care provider. “He is still on a list to go to a group home, but now he’ll never go to one,” said McCullar, breaking out in a grin.

That, explained Flagg, is because the shared living program has a provision for moms like McCullar.

“Nobody would ever be able to know or learn Donnie like his own mother,” said Flagg, noting that was part of Ouellette’s dream when he started Living Innovations a decade ago. “Here, this is just an amazing thing. We don’t have to uproot him, and we can provide the resources that will increase his quality of life. There’s a lot of potential here for growth.”

“There are a lot of things he’ll be able to do when I can do it with him,” said McCullar, “Before, it was all those extras I could never get to. When I was done work and home for the day, I was tired and it was hard to get to it.”

As McCullar discussed the program that would allow her to stay at Donnie’s side every day, Donnie’s zest for life shone through. While writing his name at the kitchen table, he stopped suddenly and looked up; a smile emerged in his eyes. A Tom Petty song was just audible on the radio in the adjacent living room, and it was all he needed to break up the afternoon. Without a sound, he rose from his chair, approached the radio and turned up the volume until the vibrations from the speakers were sufficient enough for him to bob his head to the beat.

Donnie extended his hand for Flagg to join him, stepping in time to the rhythm and reminding everyone that he is capable of appreciating music – even if he hears it a bit differently than the rest of us.

Because the program offers McCullar the same annual stipend it pays all home providers, McCullar got the green light to leave her job and focus on Donnie’s care full time. The best part for McCullar, though, is that she’ll have a front-row seat to Donnie’s outgoing – and entertaining – personality.

McCullar underwent weeks of medical training, including first aid and CPR, facts about blood-borne pathogens, and daily documentation of Donnie’s care for DHHS record-keeping purposes to prepare for life ahead.

For Flagg, families like the McCullars are the reason that Living Innovations exists. “There’s always that worry that people are getting into this for the money, but then we come across a family like these guys,” said Flagg. “For Brenda [McCullar] the money is a great addition to the fact that she gets to stay home with him.”

McCullar’s last day at work for Dunkin’ Donuts was Monday, June 11. Though McCullar said it was the most enjoyable job she’s had to date, what lies on the horizon promises to make up for the job she knows she’ll miss. “I get to keep him forever,” said McCullar with shining eyes.

The road ahead

But troubles aren’t over for the family. The McCullars are renting a small sunny trailer in a Belfast trailer park, but she recently received secondhand information that the landlord had sold the trailer.

The difference these days is that Living Innovations staff is at McCullar’s side to assist her with anything she and Donnie need. Flagg instructed McCullar to be in touch should the family need to move, and said the organization would help find a new place and provide peoplepower to help her relocate. If she becomes ill, Living Innovations will be there for Donnie.

McCullar eagerly anticipates spending time with Donnie, and participating in the respite care opportunities and program wide picnics that Living Innovations offers its clients.

Much remains uncertain, but McCullar is content knowing she and Donnie are in it together for the long haul.

“A family for me used to mean a husband, wife and kids,” she said. “But now I know you can have a family without all of that.”

To learn more about Living Innovations, visit livinginnovations.com or call (207) 368-5885.