Let’s All Think Small

Home medical equipment providers entering the pediatric market start on a tough but rewarding road. They care for some children who may never reach adulthood. On the other hand, they also see children lead normal, active lives — children who even a few years ago would have been stuck in the hospital for much, if not all, of their lives.

But pediatric equipment technology has come a long way, and its advance has brought the release of a growing number of pediatric patients — from premature infants to adolescent teens — into the home care setting.

Seeing a ventilator-dependent child in the park or a wheelchair-bound patient in English class has made working in pediatric HME more fulfilling, providers say. But it’s also made care a lot more complex. The more environments these children experience, the more factors equipment providers must consider. Along with a child’s parents or family caregivers, pediatric providers must work with everyone within that child’s social network, from physicians and therapists to teachers, friends and siblings.

“In pediatrics, you’re not only meeting the needs of the child, you’re meeting the needs of the family, teachers and others,” says Carrie VanQuanthem, therapy and adaptive equipment service manager for ChildServe Medical Equipment & Supply. “We try to find equipment that will meet needs in the home and in the school, and make the child happy and the family happy.”

That can be a tall order. While pediatric patients may be small, their health care needs can be complicated. From advanced mobility systems to the latest in portable ventilators, the child’s safety, development and quality of life can hinge on proper use of the products that providers supply.

Today, parents and others involved in the child’s daily life must all be comfortable with how sophisticated respiratory, mobility or other specialized equipment operates. For families and other caregivers, that means a courageous commitment.

For pediatric equipment providers, it means they must be patient advocates, product gurus, reimbursement magicians and educators in solving children’s problems. It also may mean stocking equipment that is unlike its adult counterparts or staffing pediatric specialists. But according to most, such risks can lead to satisfying rewards in seeing the best possible outcomes for these patients. And, because the children may be back frequently for new equipment as they grow, building a good relationship with the family can mean years of repeat business.

Following, four successful pediatric providers share a few of their techniques in approaching this demanding sector. We hope the ideas can help you in developing solutions that work as you serve home care’s littlest patients.

Getting Families Involved From the Get-Go

Pediatrics today contrasts sharply with the business Shawn McCormick knew when she got into the sector 30 years ago. Then, ventilator-dependent children didn’t come home from the hospital — in fact, the ventilators themselves had to be altered for the child’s comfort.

“[Respiratory therapists] are gadget people,” she says, explaining that “in the old days we had to adapt things down” to accommodate children, doing everything from rewiring ventilator tubing to heating nebulizer tubing for high-flow asthma treatments to “make it less irritating for the child. Now they’re made like that … We should have patented our designs!”

Back then, there were fewer options available to discuss with the family. But now things are different. As owner and president of Summit DME in San Antonio, McCormick consults with families in the hospital before the child makes the trip home, conducting basic equipment training and going over troubleshooting techniques.

Because most payer sources are unwilling to foot the bill for around-the-clock private-duty nursing care, family members acting as caregivers need to know what to do if the ventilator alarm goes off or when a child may need suctioning. In other words, McCormick teaches family caregivers basic clinical assessment skills. The more they know, the better they can communicate with clinical personnel, she says. “It’s part of our goal, our big picture, [to have the family] learn self-management skills.

“I try to begin the process in the acute-care setting,” she continues. “If the child’s on ventilation, I arrange it so we can move the child to a patient floor, away from the ICU, so we can have family members involved from the get-go.”

In beginning their training on ventilator features in the hospital, McCormick explains, “if the family panics, they have a backup with clinical people right there to support them.”

She adds that she attempts to train for as many days as the payer source will allow. “We try to get a week,” she says, though “we’re lucky if we get two or three days.” Regardless, she notes, family training on the equipment “is critical for a smooth transition” into the home.

Another important factor, McCormick advises, is for pediatric providers to keep families completely informed about anything that will affect them. Recently, for example, Texas Medicaid reduced the number of boxes of diaper wipes it would cover in a month. “Something as simple as this is really a big thing [to parents],” she explains, adding that she and her staff notified every parent in writing and over the phone about the change.

“The parents of these kids all know each other,” she says. “If you make one mom unhappy, you just made a big group unhappy.” But on the flip side, “your business grows if you take good care of these people.”

Using a ‘Triangle’ For Complete Child Care

ChildServe’s VanQuanthem says she could never fit a child to a wheelchair, walker or other mobility-assist equipment without using “the triangle.” By that she means considering a child’s role in three pertinent areas: within the family, at school and with their therapists.

The Johnston, Iowa-based mobility provider acts as the medical equipment arm for the entire ChildServe organization, which also includes social counseling centers, nursing services and a group home for children with special health needs. With so many complementary services, VanQuanthem says the equipment company is in an enviable position. Therapists are available to provide documentation for payer sources, and each division cooperates to serve all corners of “the triangle” as effectively as possible.

During an equipment evaluation, VanQuanthem says if there is any breakdown of communication between a technician and the family, it shows. Several years ago, the provider performed a power mobility fitting for a patient. Although in the office the fitting seemed perfect, at home the child could not maneuver his wheelchair under the family dinner table. “So Dad did some tinkering,” she says, making adjustments so the chair would fit.

But when he got to school the next day, the child could not reach his desk because the wheelchair was positioned too low. “The therapist at the school couldn’t believe we sat somebody in the chair like that,” VanQuanthem remembers.

From that experience, “we learned to get everybody involved during the final sitting,” she says.

With more people giving input, the session may take “three or four hours or more” — but, she explains, the time is worth it so the child is given the best fitting for all environments he will encounter on a day-to-day basis.

“If the family does not like the equipment and does not see improvement in their child’s life,” VanQuanthem points out, “then [the equipment] will not be used.”

Making It Fun So Therapy Goes Better

What does the child like? What games does he play? What does he like to eat?

Pediatric rehab seating specialist Corey VanderWulp asks families these questions. Why? Because getting a mobility-assist device can be a scary thing for anybody, and trying to adapt to the equipment can even make a child feel like a failure. And with that view, rehab therapy can go nowhere.

So VanderWulp, an occupational therapist at Bay Home Medical and Rehab in Traverse City, Mich., tries to make the experience fun for his pediatric patients. He has made up a game where the child has to maneuver a wheelchair to hit a series of cones. He has also used a kind of “kickball” game to motivate children to move their chairs.

One child learned to operate his new wheelchair using his appetite. “We found that this child loved Fruit Roll-Ups,” VanderWulp explains, “so we had a line of desks, each with a Fruit Roll-Up on it.” After the patient maneuvered the chair to each desk, the therapist and a rehab tech were able to make the appropriate adjustments.

But such games wouldn’t be nearly as effective without in-depth communication with the child’s family, according to VanderWulp. The more of a child’s likes and dislikes they pass on, he explains, the easier it is for therapists and technicians to ensure that the child gets the best performance from his equipment.

Giving Advanced Training In Small Doses

Matthew Abraham, a CRT with The Care Group, Houston, agrees that listening to the family’s insights and experiences can go a long way. After enough time passes, parents “may know more about the equipment than the nurses or caregivers do,” he says.

Like other pediatric providers, Abraham covers as much training in the hospital as possible. If a child is on ventilation, he goes over basic maintenance procedures and begins educating parents or other home caregivers on more advanced procedures they may need to know, including suctioning.

But Abraham also makes sure the information is given in doses family members can handle. People’s reaction to the training is entirely individual, he says. Some “get it” right away, while others may take several days to feel comfortable with the equipment.

According to Terri Bohannon-Gerke, executive director for The Care Group, “A number of these children can lead very productive, interactive lives,” which, in turn, “opens up more variables and more options. It’s not just [training] the parents anymore. Siblings, parents and teachers have to have some basic awareness of what to do.”

If the right training doesn’t occur, the consequences could potentially be fatal, Bohannon-Gerke adds. “There are some alarmingly high numbers [of patients] who actually don’t survive due to the trach coming out … It really sounds basic; the obvious answer is to put the trach back in, but the lay person may have trouble with that.”

With an increasing number of pediatric options available, families can be overwhelmed. Abraham recalls one family he dealt with recently that was “down about [seeing] 10 different pieces of equipment coming their way” for their child. He explained that all the equipment would promote an active lifestyle, meaning their child “doesn’t have to be in the home 24/7.”

That fact alone, he says, makes the pediatric care process more fulfilling for the HME provider than ever before.

Small Equipment, Big Rewards

When Robin Skolsky, a physical therapist with Children’s Health-care of Atlanta, works with a rehab tech to choose equipment for her patients, she keeps in mind a mantra that’s pervasive throughout pediatric circles: Children aren’t just little adults, and their medical equipment should reflect that.

Until recently, most equipment didn’t, says ChildServe’s Carrie VanQuanthem. “Eight years ago they were making equipment for ‘little adults,’ and that was it. As a therapist, you had to have a big closet full of foam. We would duct tape pieces and parts together” to make a small adult wheelchair fit a child, she relates.

Today’s pediatric equipment, however, is versatile, with manufacturers’ designs accommodating children’s developmental changes and growth. But that built-in flexibility is for naught unless the provider and therapist first choose the correct equipment and then make appropriate adjustments, Skolsky says, adding that even simple adjustments can make the difference between a comfortable, or a struggling, child.

Below are only a few of the myriad factors Skolsky says she watches during the all-important wheelchair fitting process for pediatric patients.

• Thumbs Up — For a manual wheelchair fitting, Skolsky looks at the size of a child’s thumb, which could get caught between the wheel and the rim. She also considers upper-body strength and ability to reach over the armrests to propel the chair. Depending on the child’s size and strength, she may consider removable armrests.
• Seatbelts — “This is a huge one for me,” Skolsky says. A seatbelt must be carefully chosen so that, beyond safety, it “really provides positioning assistance to the pelvis.” She notes that adult seatbelts, most of which are a few inches wide, “are too wide for children,” and adds that she likes using narrower seatbelts specifically made for kids.
• Transportation — Before any wheelchair fitting, Skolsky asks about the family vehicle. Without a vehicle that can transport the child’s mobility-assist devices, the equipment won’t be of any use outside the home. “A child in a power chair is not going to go anywhere if the family doesn’t have [the necessary] transportation,” she states.
• Eye Contact — One of the most traumatic aspects of getting a wheelchair for some children is maintaining eye contact with their peers. This is where seat-to-floor height comes into play. A lower height may make it easier for a child to get in and out of his chair, but the emotional effects of being seated drastically lower than their peers — especially for adolescents — should also be considered. While ease of transfer weighs heavily in the seating equation, Skolsky explains, making sure that a child is “eye comfortable” with friends also has its place in the process.

For More Information

Pediatric providers must keep up with the latest guidelines and practice protocols to satisfy referral sources and parents, both of whom want to secure the best home medical equipment and services for the children in their care. Following is a list of industry-related Web sites for professional and trade organizations that can provide helpful information.

www.cmsa.org — Case Management Society of America

www.aota.org — American Occupational Therapy Association

www.aap.org — American Academy of Pediatrics

www.aapmr.org — American Academy of Physical Medicine and Rehabilitation

www.apta.org — American Physical Therapy Association

www.rehabnurse.org — Association of Rehabilitation Nurses

www.aarc.org — American Association for Respiratory Care