Riding the Waiver
By Stephanie Stephens
From Hope Magazine 2012
California’s Medi-Cal Pediatric Palliative Care Benefit, also known as “the waiver,” is surging ahead, transforming the lives of families that previously faced insurmountable challenges in caring for children with life-threatening conditions.
Thanks to the waiver, Partners for Children was launched in October 2009 and will continue through April 2012. It is a comprehensive, federally approved demonstration project with 13 pilot counties originally designated as implementation sites.
Supporters anticipate a five-year renewal. The California Department of Health Care Services (DHCS) submitted an application to the Centers for Medicare and Medicaid Services in January of 2012.
No interruption of service is expected.
Partners for Children allows children age 20 or younger, who quality for full-scope Medi-Cal benefits, to receive home-based palliative care in addition to curative and/or life-prolonging treatment regardless of their life expectancy. Parents no longer are forced to make the impossible choice between comfort and cure for a seriously ill child.
Referrals can come from a child’s primary care physician, hospital medical team, California Children’s Services (CCS) nurse liaison, or the family itself. Once a child is determined eligible and enrolled, the CCS nurse liaison helps the family choose a community-based hospice or home health provider. The provider’s care coordinator then develops a comprehensive care plan, and arranges for services through a team of local specialists. Proponents say that such a plan rightfully addresses more than physiological issues, and considers the “whole per- son”: physical, spiritual, emotional, and social needs, as well.
Partners for Children services include medical care coordination with an interdisciplinary team approach: pain and symptom management; 24/7 on-call nursing support; expressive therapies like art, music, massage and play; respite; training on palliative care issues; plus support counseling—all under one very “beneficial” umbrella.
From a fiscal perspective, initial data suggests that Partners for Children saves significant dollars, with some estimates as high as $4,000 per month, per child, in crisis-driven healthcare costs. While it will be at least another year before a thorough financial analysis is available, a preliminary review is expected by June 2012.
“It makes things go a lot smoother, and helps us all be happier and healthier. I don’t know what I would do without it,”
…says single mother of three, Gina Barnett of El Cajon. Her 16-year-old son, Tyler Leone, was diagnosed with spinal muscular atrophy Type II at six months. The disease causes progressive muscular degeneration and weakness.
Through the program, a nurse comes to the house, and when requested, accompanies Tyler to doctor’s appointments, “writing everything down, and asking the right questions when I can’t because I’m nervous or frustrated,” says Gina. A social worker is also available to advocate for Tyler at school, making sure that any issues are addressed in a timely manner and his educational needs are met.
Tyler is prone to pneumonia, a constant threat, and regular nursing visits help to identify and address symptoms early before a full-blown infection develops. Twice weekly, at-home massage therapy helps the wheelchair-using high achiever sleep better, says Gina. “It’s wonderful. He’s not getting sick so much.” There’s art therapy for Tyler’s siblings and a psychotherapist available so the family can assuage their tangled emotions.
“We’re all living this,” Gina says. “It’s good to have a second ear.”
Early data indicates that utilization of the program services reduces hospitalizations and length of stay, emergency transport, and exhausting emergency room visits—all costly, both financially and emotionally.
“Tyler always gets better at home, where I have all the necessary equipment,” his mom says.
Moving Forward amid Cutbacks
“Partners for Children has made a big difference in the lives of families,” says Devon Dabbs, co-founder and executive director of Children’s Hospice and Palliative Care Coalition (CHPCC), acknowledged as the force majeure behind the passing of the waiver.
“CHPCC is made up of a lot of strong-willed, yet compassionate individuals. This organization has forever changed the way children receive healthcare in California,” says Leslie Adams, former pediatric palliative care program coordinator for Trinity KidsCare Hospice, the only dedicated pediatric hospice service in Los Angeles and Orange counties.
Despite the number of lives it has improved, establishing Partners for Children in the current topsy-turvy economic climate has proven to be more challenging than expected. “The number of enrollees is growing weekly, sometimes daily, but we’re not moving forward at the pace we would like,” admits Dabbs.
Partners for Children would really be “on a roll” supporters say, if the economic stars were aligned differently, and hadn’t impacted an already marginalized system.
At the launch of the Partners for Children pilot project, organizers estimated that more than
7,000 CCS Medi-Cal children living in pilot counties would benefit from the services, according to Dabbs. Instead the program has serviced 65 children since its inception—six have died and three were discharged.
The current economy has forced many hospices and home health agencies to cut back on pediatric programs or shut their doors entirely. “Fewer agencies are providing community-based palliative care for children,” says Dabbs regretfully.
Though slated to roll out in 13 counties, eight counties are en- gaged in “various levels of activity,” says Dabbs, citing detrimental provider attrition due to circumstances beyond their control.
Los Angeles, San Diego, Monterey, Santa Cruz, Orange, Sonoma, Fresno and portions of Santa Clara counties are currently enrolling and caring for children. Alameda remains off line due to lack of a provider, as does Humboldt, San Francisco and Marin. The Sacramento CCS office has declined to participate.
Current enrollment in the majority of participating counties is below 10. Notable exceptions include San Diego County, which was on track to enroll more than 50 children in 2012 even with paperwork and administrative obstacles. Dabbs calls it, “Our most robust pilot site.” Los Angeles County, which launched in October 2011, is quickly gaining ground with more than 50 children identified as eligible candidates for the program.
“We have a lot of eligible kids and we’re the only pilot provider in San Diego and the first in California,” says Jan Wyss, program manager for San Diego Hospice and the Institute for Palliative Medicine. “We were already participating with the AIDS medical waiver program, and we have a big children’s hospice program. Our physicians and social workers underwent a lot of education. We were ready.”
Families see the program as their safety net, Wyss says. “They really depend on it and upon the support of staff, and they are taking advantage of therapies offered.”
One can always dream. “It would be nice if Medi-Cal could pay more to provide these vital services for children in need,” says Wyss, adding that only limited provisions exist to pay the hospice’s medical team, including her and her colleagues.
“Our organization provides services at a loss. Any small hospice would struggle to do this. Fortunately, our community supports our hospice,” she says. AtSan Diego Hospice, 75 percent of funds come from insurance and Medicare/Medi-Cal payments, while the rest is donated.
At Hospice of the Valley, located in San Jose, president and CEO Sally Adelus, a fervent supporter of the Partners for Children pilot program, acknowledges, “The challenge hospices have in general is that they’re now operating in an environment of change and turmoil, in a very different landscape. Reimbursement cuts, increased government scrutiny, regulatory changes, and the advent of healthcare reform have changed the landscape radically.
For example, hospices must report on quality measures in 2012 and it is predicted that a complete overhaul of the hospice Medicare payment system will be implemented as early as 2013—the hospice benefit was enacted in 1982.
Presently, hospices are reimbursed on a daily rate, no matter how long a patient is on service. The new system, Adelus predicts, will likely alter that structure.
“Potentially, hospices may get higher reimbursement when a patient is admitted, but as the stay gets longer, the payment will decline,” she says.
In a reactive mode, hospices are starting to consolidate programs, “With any disruption, at first you tend to have a reaction of tightening down, less risk-taking,” says Adelus.
Prognosticators say smaller hospices may fold, while larger, corporate hospices may rally. Meanwhile, her non-profit hospice has yet to submit an application to participate in the pilot program, because adding the necessary additional staff really is a financial challenge, says Adelus, who wishes, as do others, for a “wonderful benefactor.”
It’s not that hospices don’t want to participate—many simply can’t.
“The entire model of how Partners for Children is constructed is really beautiful,”
…she says. “But hospices are making hard decisions about where to diversify without assuming additional risk. All hospices are asking themselves about capacity and sustainability.”
A Delicate Balance
The waiver was designed to be “flexible,” says Dabbs, but as she and supporters have learned, one waiver size does not fit all. A good program could be better, they found: such is the case with pain and symptom management, formerly excluded from the waiver. The state believed that in-home nursing, for example, would cover this key aspect of care—that it didn’t need to be included as a service under Partners for Children. Families, however, need all symptoms managed, both physical and emotional.
CHPCC sought to fill “a big hole,” says Dabbs, and the Coalition worked hard advocating for the amendment, which became effective in January 2011.
“Not only does this provide an essential service to the child, it opened up another revenue stream for agencies to participate by billing and being reimbursed for nursing services,” Dabbs says.
Another significant amendment is the expansion of medical criteria. “Many chronically ill children who don’t have a clear diagnosis can now be qualified under the ‘other’ category at the nurse liaison’s discretion,” says Dabbs.
That’s great news for a couple of reasons. Some counties, like Orange, have been slow to identify children who may qualify for the pilot program, as have physicians and medical team members in general—this makes it easier.
Dabbs calls it “a delicate dance. Providers need to build pediatric teams, but they must have a large enough census to justify doing so. We hope that opening up the medical criteria and increasing the number of children eligible for the pilot program will be a catalyst for change. However, at the same time, we don’t want to suddenly have a lot of qualified children on a waiting list strictly because we don’t have enough providers.”
Still, the “other” category may incentivize providers to offer services to a larger population of children, she says. Then children may experience the kind of incalculable support that extends lives and enhances its quality, providing opportunities for children to fulfill dreams and destinies, just like Tyler Leone.
As manager of the El Capitan High School varsity football team, this junior is an “encyclopedia of sports,” say team members, and is set on becoming a head coach someday.
“If you want to be a champion, you have to work at your best level every day,” he told NBC San Diego, after being named “Inspirational Student of the Month” last year.
His mother assumes that he’ll attend college. “I think he’s going to be fine,” she says, knowing that behind her and Tyler is another remarkable team that’s surging toward success.