PARENTS SPEAK OUT-1
How the Jones Family Advocated for Care Coordination
Vicki and Mitch Jones have four children and live in a small northeastern town. Their oldest son, Bobbie, is 8 years old and in the second grade. Bobbie is bright, has a great
sense of humor, and has a lot of interests — reading, looking at art, and adaptive skiing.
Bobbie was born six weeks early and spent 83 days in a neonatal intensive care unit. Prematurity led to severe jaundice, brain injury, cerebral palsy, and auditory dyssynchrony. Like some other children with cerebral palsy, he uses a wheelchair for mobility and
augmentative devices for communication. He is integrated into the local public school. He is smart and hard working. He gets most of his nutrition through a g-tube and has a baclofen pump for muscle relaxation medication. He also takes other medications. Through
the highly specialized Medicaid program known as “the Katie Beckett Waiver,” Bobbie receives home nursing care and the services of a professional care attendant.
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Vicki thinks back about Bobbie’s earliest days.
“The number of medical decisions we were making from the jump were extraordinary . . . I was asking questions constantly — what are you giving him, what is it helping, how much, why does this interact with that, what’s going to happen next. Neither of us had ever spent a minute in the hospital before. This was all new.”
Facing the nearly overwhelming facts about Bobbie’s condition was one of the family’s challenges. Taking care of him at home was another.
“When he came home he was an absolute mess, throwing up, crying, uncomfortable — and this was before we knew anything about cerebral palsy. It was from the beginning — reactive. A number of decisions were intense and reactive for a long, long time and then we started to get a little ground under us — I think he was 3 — in terms of sleep and general health, growing and stabilizing.”
“When Bobbie didn’t sleep, we didn’t sleep; he vomited, we re-fed him — very low tech remedies. He was working so hard to eat and then he had to eat again — it wasn’t just about us having to re-feed. He vomited 24 times a day. We tried a number of things. We got breast milk from the breast milk bank, we met with feeding team at the hospital; we made purees, tried acupuncture, massages, and herbs.”
Reconciling the family’s values with Bobbie’s and the family’s needs and making a value-based decision was yet another.
“For the g-tube issue, one of the values that was in conflict with was that we wanted to make the least invasive, most holistic decisions all along the way . . . an herb rather than a chemical — great; or a massage instead of a knife — great. This was a big shift. Once Bobbie came out of the NICU where things were not in our control we tried to do as much as we could to work up the ladder to more invasive – the g-tube was up the ladder and we had to do it.
Moving from the crisis-stage and preventing them was the next challenge.
“He was stopping breathing 12 to 24 times a day for a long time. As he stabilized we started to look ahead and do research, talk to other parents, subscribe to Exceptional Parent (magazine), go to conferences . . . and then we started to compile the file cabinet — making connections, networking . . . and then the decision-making changed. It was a fundamental change because we had a chance to be in front of the ball instead of behind it.”
That’s where other parents’ experiences and insights came into play.
“We talked to Parent to Parent, other parents — this is a common thread through all of our decisions. Talking to other parents was absolutely huge. We found the neurologist and then the GI person through other parents.”
“I called Parent to Parent and got names of parents with children who had a g-tube. I called and met with parents — every parent to a one said the g-tube was so worth it, looking back . . . and if anything they wished they would have done it sooner. The notion that it could be undone, taken out was important — it was good to know it was a reversible surgery. We could hold out hope.”
Of course other parents can help. But they are not professionals. They don’t diagnose, prescribe, and treat. Professionals do that. And they don’t often coordinate a child’s care.
In an ideal world, Bobbie’s family practice doctor might be the person who coordinates his care. But Vicki explains that the doctor doesn’t have the resources for the “medical home” model.
“We are making major medical decision by ourselves because we have no overarching person.”
Or, perhaps, a case manager would be the perfect person to coordinate Bobbie’s care. Again, Vicki explains that so far that hasn’t been the case.
“There are 10 people whose name is “case manager” — from CSHN (Title V program), the local community service center, our family practice physician, two at the school, the nurse association. Each organization says they are doing this. Is it administrative or direct service care coordination? There is a misunderstanding in their job description — what they say it is and what I perceive it to be. What a learning curve we have been through. Case managers are not helpful — this is what I do.”
“I came to every meeting with 10 things I’ve followed up on. Everyone there has the title and I’m the one running around finding the information, keeping notes, bringing research articles to their attention. I’d love to see what [funds are] going toward direct service. Every social worker has their one piece; no one is bringing it all together.”
“I go to the library . . . I digested and reflected on the information from the research at our local university, all the questions I had I brought to doctors. I was increasingly empowered and could ask the questions.”
Bobbie’s father Mitch identifies the real care coordinator.
“Years ago we had care conferences in doctor’s offices. A lot of it was about figuring all this out. One time in
particular I was worn out — we went around the room to do introductions — six people said they were the care coordinators but I knew Bobbie’s only care coordinator was Vicki.”
And what does the real care coordinator think about her duties, bearing in mind that she also has roles as a wife?
“I quit my job to focus on ‘this project.’ I was talking to a parent who was very bitter about giving up her career to do exactly what I’m doing . . . and I do feel, at times, resentful — not at Bobbie, but if I have two hours to myself I don’t want to be doing paperwork. It’s an extraordinary stepping up that is required that I don’t think can be accepted by an average family.”
This research was conducted in collaboration with the Beach Center on Disability. It was funded by
the Rehabilitation Research and Training Center on Families of Children with Disabilities of the
National Institute on Disability Rehabilitation and Research (H133B30070) and private
endowments. Permission granted to reproduce and distribute this research brief.
Please credit the Beach Center on Disability.
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