Health & wellness

For sick children, help with all of life’s complexities

Sofia, a 9-year-old with multiple medical problems and has been a patient in the Boston Medical Center program, works with therapist Colleen Burns.
Sofia, a 9-year-old with multiple medical problems and has been a patient in the Boston Medical Center program, works with therapist Colleen Burns.

When Brenda Rodriguez lost her apartment and everything she owned in a fire early last year, the place she turned for help was the office of her daughter’s pediatrician, Dr. John S. Maypole.

A social worker in the office helped Rodriguez apply for shelter and supplied her with gift cards to buy clothes and other necessities. When the hotel where Rodriguez and her daughter were staying triggered severe allergies in her daughter, Maypole helped get the family into a healthier location.

“I felt I was stronger with them being there,” Rodriguez said. “He was not only my daughter’s doctor. When I needed him to speak to anyone, he’s been here.”

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Today, Rodriguez, 32, has settled into an apartment. Her daughter, Aneixi, now 4, is in enrolled in Head Start and doing well — even though she was born 14 weeks premature, weighing only 2 pounds.

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Clothes, shelter, the mother’s stress — are these the doctor’s job? Certainly a family’s struggles can affect the children’s health. And when a child is already sick and vulnerable, that effect is magnified.

That’s why Maypole’s practice, the Comprehensive Care Program at Boston Medical Center, includes staff to help with nonmedical issues. His patients are considered “complex”: they have multifaceted medical problems, such as Down syndrome, sickle cell disease, neurodevelopmental disorders, genetic disorders, or severe asthma. Many were born prematurely. They also often have parents who are dealing with disability, domestic violence, substance abuse, or homelessness..

Homelessness can be especially tough on a child like Aneixi, because she was so premature, which left her lungs vulnerable. Living in a place that made her wheeze was a threat to her health.

When Maypole sees a patient, often the medical concerns take the least time.

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He might need just a few minutes to adjust a kid’s asthma medication, for example, but then he learns the rest of the story, which he says might go something like this: “They live in a shelter. People in the shelter smoke. They’ve been placed in Waltham. It’s a brittle child that really should not be that far out. The mom has a domestic violence issue and, by the way, they don’t have a crib and they don’t have a feeding chair. And they have since lost their connection to Early Intervention because they were placed in a shelter in Waltham and they were originally in Roxbury. I see that every day.

“The medical piece I could probably do by phone,” Maypole said. But the nonmedical issues, “That’s a face-to-face situation that requires multiple touches.”

For those touches, the two physicians in the Comprehensive Care Program, are backed up by a nurse, a nurse practitioner, a licensed social worker, and a family navigator. The navigator, a new kind of health professional, follows up with parents to make sure things are going as they should — that the family was successful at contacting social service agencies or understands the care plan, for example.

In addition to social supports, the program has established connections within Boston Medical Center for better access to specialists. “If a child has a need,” Maypole said, “our practitioners are amenable to either a quick consult, or adding them on to their schedules.”

The other day, Maypole recalled, “I had a family who were panicking over a developmental concern. The developmental clinic was booking months out.” But the neurologist connected with Maypole’s practice agreed to squeeze in the patient that day, to begin the process of evaluation.

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Nine-year-old Sofia Pignataro is another “complex” child, born with Down syndrome and heart defects. She initially developed normally for a child with Down, learning to talk and identify colors. But around age 3, said her mother, Lucy Pignataro, “Everything that she had gained, just stopped, and there was no explanation.”

When Pignataro’s husband got a job as managing director of the Global Jazz Institute at the Berklee School of Music about five years ago, the family moved to Boston. That’s when tests at Boston Children’s Hospital’s yielded the answer: Sofia also has autism.

Her mother was devastated. “With Down syndrome, I knew what to expect of my daughter and what I hoped for. But with autism you have no clue. . . . It was like a brick wall.”

At Maypole’s Comprehensive Care Program, Pignataro got some help climbing that wall.

“When I first went to see [Maypole] there, it was a totally new experience,” she said. A nurse interviewed Pignataro in depth, and offered help with such issues as schooling.

“You feel like you’re more than somebody coming in with a sick kid that needs a pill,” Pignataro said. “They want to get to know you. They want to know how they can help you be a better parent to your kid and get your child everything that they might need.”

Maypole’s program serves children in the greater Boston area, but starting in December, it will start to reach out statewide. Boston Medical Center recently won a three-year, $6.1 million Health Care Innovation Award from the US Centers for Medicare and Medicaid Services to establish the Massachusetts Alliance for Complex Care.

In collaboration with the Baystate Medical Center in Springfield, the alliance will bring the kind of care that Rodriguez and Pignataro experienced to 500 additional families around the state, testing what they’re calling the Collaborative Care Coordination and Consultative Model for Complex Kids (the 4C, or “Foresee” Program).

Under the plan, Maypole and Dr. Matthew D. Sadof of Baystate will serve as consultants to community pediatricians on how to care for children with complex issues. The children will stay with their current pediatricians, but will come to BMC or Baystate to be assessed and to develop a care plan. The alliance will also provide the back-up services of nurses, social workers, nutritionists, and navigators. The program will hire about a dozen people.

As part of the project, Sadof and Maypole plan to address a bedeviling problem: difficulty accessing a child’s complete, up-to-date medical record when the many providers have incompatible computer systems. Today, they have to wait for medical notes to come over by fax.

The alliance wants to create a secure, cloud-based system that will allow parents and authorized professionals to read all the medical records at once, perhaps even on their smartphones. “We’re really looking at interoperability as a centerpiece of this,” Sadof said.

Additionally, the program will share data with MassHealth (the state’s Medicaid program) and all the insurers that have managed-care contracts with MassHealth. “We feel the cost savings will more than pay for itself,” Sadof said. And that could open the door to continuing the program after the three years are up.

Kathryn Quinn, a nurse practitioner in the school-based health center at the Blackstone Innovation School, a Boston elementary school, is thrilled that Maypole’s program will expand. Her school serves children with multiple disabilities. About a fifth of them are Maypole’s patients, but all could benefit from the enhanced services his program offers.

The children in her school get plenty of specialized medical care, Quinn said. What they lack is someone to coordinate it. “You have multiple hands in the pot and sometimes people don’t know what the others are doing,” Quinn said.

They also need someone to help with all the nonmedical problems that affect health, such as the child who has to be carried up and down the stairs from his third-flood apartment because the building cannot accommodate the youngster’s wheelchair.

“Having this additional funding,” Quinn said, “will really improve care coordination for these kids. Hopefully it will improve the child’s overall health and wellness.”

Felice J. Freyer can be reached at felice.freyer@globe.com. Follow her on Twitter @felicejfreyer.

Correction: An earlier version of the story incorrectly spelled Sofia Pignataro’s name.