How to turn parents into pediatric rehab advocates
Dealing with managed care takes time, expertise
Managed care pressures have made Roslyn M. Gleeson, MSN, RN, CS, an expert in far more than the clinical side of pediatric rehabilitation. She has now become adept at looking at lifetime benefits, denials of care, insurers’ appeals processes, lifecare plans, and parent advocacy. In fact, Gleeson and many other rehabilitation professionals realize that, in order to provide optimal treatment for their young patients, they must learn to negotiate the complicated world of managed care teach parents to be advocates for their children.
"Managed care has added a whole new dimension. My training is to be an expert in the health care end and everything that encompasses. I didn’t think it meant being an insurance expert," says Gleeson, who is spinal dysfunction program coordinator at duPont Hospital for Children in Wilmington, DE.
Pediatric rehab providers tell of struggling with case managers who don’t grasp the needs of children; severely restricted therapy visits; insurers who balk at replacing durable medical equipment as a child grows; and case managers who want to send children to adult facilities for testing or treatment.
Even convincing payers to cover routine care for a child with a chronic condition can be difficult because it is is much different from routine care of other children, Gleeson says. Within a lifetime, for instance, children with spina bifida can expect to have six to 10 surgical procedures, she notes. Further, children with any kind of spinal cord disorder must be monitored annually for changes in their bowel and bladder function. (See story, p. 148, to learn how one hospital details a child’s lifetime care needs.)
Dealing with outgrown equipment
Then there are equipment issues. Children who use braces, crutches, or a wheelchair need to have those devices adjusted. Yet, some insurance companies provide for only one pair of braces. It requires a lot of correspondence to get additional equipment approved, Gleeson adds.
Medicaid usually sets the precedent, and other payers follow, Gleeson says. For instance, Medicaid allows a new wheelchair no more than every three years. When a chair is ordered and fitted, it must be fitted to allow for growth because it has to last for three years.
Treating a pediatric patient who is going to need lifetime care requires careful planning that must begin soon after the onset of the illness and injury and involve the family.
"Sometimes it’s difficult for parents to acknowledge that their child will need a lifetime of care. It’s very threatening," says Sheila Hickey, LSW, a social worker with the Rehabilitation Institute of Chicago.
Get family involved early
Hickey advises working with the family as soon as possible to realistically look at the resources available and plan for the future. In addition to the insurance coverage, she helps families find out what other resources may be available.
At Children’s Hospital of Wisconsin in Milwaukee, the staff tries to develop a frank and open relationship with each patient’s family to discuss what resources are available and how they can be used. "You struggle with parents wanting the utmost potential for their child, but on the other side of the fence is what is reality, and that is how much therapy their insurance will cover," explains Eileen Sherburne, RN, MSN, CRRN, rehabilitation clinical nurse specialist.
Sherburne often tells the families she works with that the child with the greatest family support often has the best outcome. "The parents are going to be the people involved with the child for the rest of their lives. We are just there until we get a new job or the child is discharged. We, as professionals, need to listen to the parents, but we also need to help the parents understand the medical issues as they relate to resources that they and their company have bought into," Hickey says.
Getting parents involved in dealing with the payer gives them a sense of control and makes them more knowledgeable about their child’s disease and treatment, Gleeson says.
"They need to be concerned with only one insurance company and one child, and in that respect they can become experts," she adds.
Insurance authorization isn’t usually a problem for children with a newly acquired disability, Sherburne says. Instead, she says, the problems start a few years down the road when the child hits a plateau and the insurer begins to balk at more equipment and treatment. "We try to be honest with the families and let them know that the intensity of therapy will be decreased."
The parents who are the most vocal and advocate the most intensely for their children are the ones who get the most therapy and equipment approved, Sherburne says. "The doctor can write letter but it comes down to the parent." (For examples of how parents and providers have successfully challenged denials, see story, p. 150.)
Delaware’s Medicaid has contracted with a number of managed care associations, all with different rules about referrals that make paperwork complicated for the hospital staff, Gleeson says. For instance, some children need only one referral for the multidisciplinary spinal dysfunction clinic, but others need a separate referral for each therapist or physician they see. "In this case, we work directly with parents to make sure they find out what kind of referrals they need," Gleeson says.
The problem is complicated by lack of a consistent vocabulary among managed care companies. Some call it a "referral." Others call it "precertification." But both terms refer to having the insurance company approve the child’s visits to the clinic.
Some companies require the primary physician to write a new referral every time the child comes to the clinic. Some physicians resist this requirement, feeling that when they refer a child to a spina bifida program, they shouldn’t have to write a new referral every few months.
Sometimes parents can’t get the referrals, or their managed care plan won’t approve the child’s visit to the spinal dysfunction clinic. When a child is turned down for treatment or equipment that is medically necessary, Gleeson guides the parents through the process of getting an appeal.
"I tell them it may take a lot of time before they get to the right person, but I want to make the parents their own advocates. Once I spend time doing that, they can handle the process on their own," Gleeson says.
If an insurance company rejects a child’s medical expenses, Gleeson suggests parents find out what they need to do to get an exception. [Editor’s note: Roslyn Gleeson may be reached at (302) 651-5054; Sheila Hickey at (312) 908-6245; and Eileen Sherburne at (414) 266-3063.]
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