Taking pediatric private duty care into centers can improve outcomes
Taking pediatric private duty care into centers can improve outcomes
Model benefits medically fragile children, but poses many challenges
Pediatric providers with a large private duty service may consider establishing centers of care for medically fragile children. Such programs can dramatically improve patients' functional status and social development while giving families a break from the day-to-day rigors of caring for chronically ill children. However, while center-based care can be financially successful and professionally rewarding, it requires careful planning and significant management resources, according to those now providing the service.
Though different people use different names to describe it, the concept is the same. Preschool-aged children with multiple medical conditions and significant therapy needs who ordinarily receive services at home come to a center, usually five days a week. There, a team of educators and licensed medical professionals, including RNs, as well as physical, occupational, and speech therapists operating under a physician's orders, aggressively address the children's medical, developmental, and social needs.
Children receive valuable social interaction
The centers have lofty goals. They seek to maximize each child's functional status, stabilize the medical condition, and improve socialization while giving families much-needed respite and optimism about their child's long-term prospects. All of this can be accomplished at a cost lower than private duty only, according to sources.
"We want to promote the greatest self-determination for each child," says Shelli Yesenko, program director of Within My World, a Baltimore-based center. "Many [children] have not previously been around other children. They lack socialization; their parents thought they were only capable [at a certain level], and they are only used to things being done to them."
Children typically cared for in centers have chronic pulmonary or gastrointestinal insufficiencies, cardiac conditions, or complications following neurotrauma. They may be ventilator-dependent or require supplemental oxygen. Some have J-G or G-Tubes; others have central IV lines. Still others may have seizure disorders or other conditions such as food aversion that require extensive therapy. In short, they are medically complicated - indeed, fragile children that standard child care centers consider "untouchable." Even close family friends and relatives often regard their care "off-limits" out of fear, both of the technology itself and potentially harming the child.
Before coming to a center, most children receive nursing and therapy services at home. Equal access laws compel school systems to educate them once they become school-aged, but until then, many are essentially homebound with little opportunity to interact with other children.
Yet "there is so much more to growing up than just growing up," says Linda Brown, OTR/L, MBA, program director for Pediatric Services of America's PPEC and Home Care operations in Orlando, FL. Not only do the centers give the children valuable social interaction, they may also provide access to services usually only available in a home care setting.
For example, Florida Medicaid home therapy rates are so low it is difficult for any agency to offer the therapy at the frequency required, and in some instances, any therapy, Brown explains. While Florida "pediatric prescribed extended care centers," as they are called by state regulations, receive no better reimbursement, a critical mass of patients and no travel time enables them to provide an appropriate amount of therapy, she adds.
As center-based care for medically fragile children is relatively rare, private duty providers face an uphill battle in establishing and successfully operating a program, according to sources. They must educate a variety of state officials, third-party payers, and even physicians and parents.
Anyone considering it should expect a long process. However, the operational challenges can be overcome, according to sources who offered the following tips:
r Identify patients. Many center-based care candidates are currently private duty patients. Private duty providers may rightfully wonder why they should establish a new service that could potentially ravage a profitable existing program. "It does cut into [your] private duty population, but it increases private duty referrals because people know you can refer into other resources as soon as a child is ready, and you can better coordinate care," Brown explains.
Fears of decimating your private duty service may also be unwarranted, according to Linda Therrien, RN, MS, director of Children's Home Care and Community Health Services in Denver, which operates the KidStreet center. "None of our existing private duty families transitioned [into the center]. They didn't want to lose nursing," she says. KidStreet instead found patients before they entered private duty. "We began educating parents while in the hospital that they could expect to bring the kid home, get used to that, and then move on to center-based care," Therrien explains.
Other pediatric populations included
KidStreet also reached out to patients who might otherwise be overlooked. For example, it has a number of cystic fibrosis patients. Such children are ideal center-based care candidates, she says. "They have significant nutritional and respiratory issues and require aggressive management. It's a difficult disease to manage and it's nonstop."
Some center-based patients may also continue to receive private duty services, sources advise.
r Investigate state regulations. You may pay a price for being a trendsetter. Your first contacts with state licensure agencies may be met with blank stares and confusion, sources note. Your request may be the first to cross state agencies' path, or it may be one of many caught in a bureaucratic shuffle. For example, there is no specific licensure in the state of Tennessee, though efforts to obtain it have been under way for about 10 years, explains Marilyn Lynch, RN, CNCU, director of the Pediatric Services of America's Nashville and Knoxville, TN, offices. Legislation is now in the works to license it as day care.
Florida, on the other hand, has specific "pediatric prescribed extended care" regulations. They spell out such issues as who must be on the center's advisory board, the nurse-child ratio, and even how often to do laundry, according to Brown. Although Colorado and Maryland license the service under child care regulations, both KidStreet and Within My World operate above those minimum requirements, say Therrien and Yesenko.
While some providers may rankle at the thought of their program being licensed as a day care center, "even if it is licensed as day care, it will be a step forward," says Lynch. And Brown agrees. "It provides some protection against people who would reduce staff levels, etcetera."
r Plan the center. State licensure requirements aside, care centers for medically fragile children require significant facility planning and development, sources advise. "These are active kids with lots of equipment. We have one girl with three wheelchairs. And you have to have the [oxygen] lines piped in so the kids can move around," Therrien explains.
Although KidStreet's landlord built out the space, the program paid $10,000 to 15,000 for the oxygen system, says Therrien. She estimates the 1992 start-up costs were less than $50,000. Within My World spent around $150,000 to renovate space and another approximate $30,000 on equipment prior to opening 2½ years ago, Yesenko says.
Equipment expenses may vary depending on therapy staffing arrangements, according to Brown. If therapists are independent contractors who have agreements with the center, they will usually provide most of their own equipment, and the center will supply proportionally less. On the other hand, if most of the therapists are full-time employees, the center must purchase more equipment, she explains.
Besides build-out costs, the main operating expenses are rent and labor. Staffing ratios vary, but several of the programs reported 3-to-1 child-to-RN ratios, supplemented with therapists, child care assistants, and teachers.
Centers also usually provide transportation for ventilator-dependent children. Some state Medicaid programs reimburse the service; others do not.
r Obtain state Medicaid funding. As Medicaid or Medicaid-waiver programs pay for the care of most of the children who are candidates for center-based services, obtaining Medicaid funding is critical. Operating without it may simply not be possible. Pediatric Services of America recently closed four centers in Tennessee for that reason, according to Lynch.
Winning Medicaid approval may be a long and arduous process. Therrien reports that she began working with the Colorado Medicaid program the year before opening KidStreet but only obtained funding approval a year after it was operating. Education efforts should start at the local level. Contact local Medicaid medical directors and case managers, Brown advises. "You really need their support." Ask if they have children who could benefit from such a program and whether they think it is valuable, she recommends.
After building support, you should "talk financials when talking to Medicaid [officials]," Brown adds. "You have to get their attention that it's a need, not an extra benefit," Lynch explains.
"You have to overcome the myth that its day care," says Therrien. "They're going to take care of the patients with private duty anyway. Tell them it's a private duty program, but center-based. [Explain how] you can aggressively manage the patients and talk about the therapy and nursing," she advises.
Watch that discussions about nursing care do not focus on the number of minutes of care, Therrien warns. "Sell it as hourly skilled nursing assessments. A decreased rate [is OK], but not minute-by-minute care," she adds.
States that approve funding generally reimburse at a lower rate than hourly private duty services - sometimes substantially less. Maryland, for example, pays $24 per hour for private duty, but only $45 for the Within My World 11-hour day, Yesenko says. With 80% of its patients covered by Medicaid, the program could not survive without additional grant funding from the Maryland Department of Health and Mental Hygiene and the United Way, she notes.
For those operating in states with more reasonable reimbursement, centers for medically fragile children can survive and thrive. Although most KidStreet patients are covered by Medicaid, the program's two sites make a small profit, according to Therrien.
r Obtain private reimbursement. Acquiring Medicaid funding is one thing. Gaining managed care and insurer approval is another. "Pediatric prescribed extended care [and even private duty] may not be written in plans. [Coverage] often comes down to the home health benefit and the flexibility of the case manager. [And] you have to show cost savings," Brown says.
"If they don't do anything for chronically ill children to begin with, it's a hard sell. The best thing is to focus on the child's skilled medical needs. Don't give the insurance company any chance to say it's day care. They're not in the business to care about families [so touting a better functioning, more adjusted family will not win approval]," Therrien says.
Perseverance needed
Winning insurance coverage requires education and persistence, Brown says. "The keys are supportive physicians and persistent parents. You have to work with physicians and ask them 'What kinds of things does the insurance company need to know about this kid to benefit from this program? What will it prevent or minimize to decrease costs?' And parents have to know benefits managers and [make it clear] that this child is going to get care," she adds.
"Almost every time, a [center-based care request] goes through the [insurance company] medical director, so you really need physician support," Brown says. It also helps to document all conversations with insurers and get verbal commitments in writing, she says.
Insurer approval may be easier in the future, as providers begin quantifying patient outcomes. "Our attendance rate is 85%, which is higher than most regular day cares. That's a measure that we're averting hospitalizations," says Yesenko.
KidStreet is now conducting outcomes research, Therrien says. It plans to document the many anecdotal stories of decreased hospitalizations and avoided emergency department visits received over the years. "That will be a big selling point," she adds.
Potentially large capital investment, difficult reimbursement prospects, and a limited market add up to a risky, labor-intensive venture. "It is not something everyone would want to do. It is a hard program to sell, to work financially," Therrien says.
Brown agrees. "It is very difficult in the beginning. You don't know the service as well, you can't articulate its benefits [as clearly], and you make mistakes. And physicians don't know it as well; they don't know the success rates," and are less likely to promote it among patients.
Fluctuating census levels but relatively stable staffing patterns add ongoing challenges. "It's a cycle. Children leave. They get better; they go to school; some get worse," Brown explains. The KidStreet center averages 16 to 18 children. Within My World maintains 24 full-time spaces for about 28 children. Several attend the center part-time, Yesenko adds.
"Its tough to manage the staffing. You can't decrease it with the census. And its hard to find people who will work in that environment. They don't always like a free-flowing environment. These kids aren't stationary," Therrien says.
It took about three years for KidStreet to break even, according to Therrien. The Orlando Pediatric Services of America center was profitable within a year, Brown reports.
With so many potential hazards and uncertainties, center-based care may not appear worth the risk. But it does work, according to sources. Pediatric Services of America operates five centers in Florida and one in Georgia, with another planned in Florida, Brown says.
Building off its KidStreet success, Children's Home Care and Community Health Services established a second center in 1995, Therrien says. The new center is a collaboration with the Denver YMCA. KidStreet rents 10 spaces in a YMCA child care center, and although the KidStreet patients receive nursing and therapy services, they are in developmental and age-appropriate classes with healthy YMCA children. The YMCA center is a "step-down" from the main KidStreet center. Children transfer there after their conditions become more stable, she adds.
The arrangement benefits all the children, Therrien says. "The normal kids get to be with kids with challenges and they don't develop prejudices. They see the normal parts of kids. [And this] empowers the [medically fragile] children. They don't see themselves any differently than others. Its like someone set them free."
Despite challenges, center-based care providers universally sing its praises. "It seems like the right thing to do for kids. It's awesome, the accomplishment for kids in the center vs. home care. The kids do better, their medical conditions stabilize, their functional status increases, and you get them a little independent. And you show the family the health of their kids rather than the sickness," Therrien says.
"It's a wonderful program," Brown adds. "It is so needed. It's such an efficient care delivery model for these complex kids' needs. It's good for the families, and it's financially sound."
Yesenko marks success from comments a patient's grandmother made to her at Within My World's recent graduation ceremony for 3-year-olds. "I'm so glad we found your program," she said. "This is the only place we're loved and not just served."
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.