Catholic Health World - September 1, 2019

Thoughtful medical missions 2 Cushioning hard hits 3 Executive changes 7 PERIODICAL RATE PUBLICATION

SEPTEMBER 1, 2019 VOLUME 35, NUMBER 15

Center would fill care gap for profoundly disabled young adults

Chris Marksbury/Courtesy of Elizabeth Seton Children’s Center

When medically fragile patients age out of longterm pediatric facilities, the consequences can be heartbreaking

By LISA EISENHAUER

When the directors of Elizabeth Seton Children’s Center noticed what seemed like a grim trend of former patients dying shortly after aging out of the center, they checked the numbers.

Sure enough, they found that 30 percent of the patients who had aged out of the center since 2012 under state regulations had died within 14 months of being transferred to an adult care/geriatric facility or a facility managed through the New York State Office for People with Developmental Disabilities.

The age restrictions limit the stand-alone pediatric long-term care facility in Yonkers, N.Y., to patients 21 and younger.

Continued on 8

Cardinal Timothy Dolan greets Jesus, a young patient, while making a Lenten visit to the Elizabeth Seton Children’s Center in Yonkers, N.Y., on March 28. Cardinal Dolan, the archbishop of New York, took advantage of press coverage of his outing to voice support for the center’s plan to build a long-term care facility for young adults with medically complex conditions.

Dignity Health Specialty Pharmacy sets out to ensure chronically ill patients get the most out of treatments

By COLLEEN SCHRAPPEN

The good news in treating chronic diseases such as HIV, hepatitis C, multiple sclerosis, cancer and rheumatoid arthritis is that there are COMMONSPIRIT more specialty HEALTH drugs on the market than ever before — about 300 today compared to 10 in 1990. Another 800 or so specialty drugs are currently in the pipeline.

But for many patients, even those with insurance, these specialty pharmaceuticals are unaffordable. Although only a

By LIZ GARONE

Losing a child is every parent’s worst nightmare.

“It’s worse than losing a parent, worse than losing a spouse. It’s at the very top of the list,” says Dr. Glen PROVIDENCE Komatsu, the chief medical officer for ST. JOSEPH Providence TrinityCare HEALTH Hospice. He also is the medical director of the hospice’s pediatric division, TrinityKids Care. It provides endof-life care to infants, children and adolescents throughout Los Angeles and Orange counties, an area larger than the state of Connecticut.

TrinityKids Care is the largest pediatric hospice program in Southern California. At

A rare and unspecifiable brain disorder caused Layla’s nervous system to malfunction and break down. She had undergone intensive treatments at three West Coast hospitals. Her care had included more than 19 teams of clinicians, according to her parents.

Despite extraordinary medical interventions, her quality of life was deteriorating, and the The Sonnen family turned to TrinityKids Care to provide in-home endfamily later wrote in an of-life care for their toddler daughter Layla, who died in July 2017. Matt online post that Komatsu and Larissa Sonnen are shown here with their children Luke and Layla “helped us to realize that, celebrating Layla’s second birthday. The pediatric hospice, part of instead of prolonging LayProvidence St. Joseph Health, serves Los Angeles and Orange counties. la’s life, we were ultimately prolonging her pain.” any given time, there are 60 to 70 patients The decision to put 2-year-old Layla in and their families under care. hospice care was agonizing for everyone, In 2017, Matt and Larissa Sonnen chose especially for her mother. “It felt like I was TrinityKids Care for their daughter Layla.

Continued on 5 Courtesy of the Sonnen family

TrinityKids Care staff offer loving support for children, families

Audriana Sanchez, a specialty pharmacy technician, at work in the specialty pharmacy at St. Joseph Hospital and Medical Center in Phoenix where Dignity Health launched a program to provide outpatients with chronic conditions ongoing personal support.

Courtesy of Dignity Health

Hospice helps families with sick kids to concentrate on what matters most

small fraction of patients are prescribed the drugs, specialty pharmaceuticals have been the main driver of U.S. drug spending increases over the past few years. According to several analyses, per capita spending on specialty drugs rose by 55 percent from 2013 to 2016.

Though there is not a hard-and-fast Continued on 3

CHRISTUS trains managers to see, counter unconscious biases Whether it’s in management decisions, workplace dynamics or patient care, officials with CHRISTUS Health are aware that underlying biases can be at play.

Such biases, often referred to as implicit or unconscious biases, are part of the innate and experience-based instincts that tell people’s brains how to react in given situations. “If we’re humans, we have them,” said Marcos Pesquera, CHRISTUS’ vice president for health equity, diversity and inclusion and community benefit. “It’s not Pesquera good, it’s not bad, it just is.”

Pesquera doesn’t even use the word biases, he refers to these unconscious

assumptions as preferences.

As part of CHRISTUS’ broader commitment to embracing cultural diversity, creating a welcoming workplace and providing quality care for people without regard to ethnicity or gender, the health system’s equity and diversity leaders decided to drill down deeper and help managers explore the roots of any biases they might unconsciously harbor.

Tiffany Capeles, director of health equity for CHRISTUS, says research shows “people like to associate themselves with people who are like them, and that’s not wrong, but in the business context when thinking about teams, there’s a lot of research that shows that having diverse teams actually benefits (organizations).” Capeles was

in CHA’s 2019 class of Tomorrow’s Leaders.

CHRISTUS, based in Irving, Texas, has facilities in Texas, New Mexico, Arkansas, Louisiana, Mexico, Colombia and Chile.

Cultural agility The health system turned to Shannon Murphy Robinson, chief executive and co-founder of the leadership training and consulting firm BrainSkills@ Work, for training. Murphy Robinson said her firm relies on the latest findings in neuroscience “to help people in organizations be more effective leaders, more inclusive and more culturally agile.

“A lot of our work focuses on helping people understand how good intentions to be inclusive aren’t enough and that the brain can trip us up de– spite those good in– tentions,” she said.

Aleuti/Shutterstock.com

By LISA EISENHAUER

Continued on 4

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CATHOLIC HEALTH WORLD September 1, 2019

CHA part of group exploring how best to provide medical aid internationally

By JULIE MINDA

CHA is helping to lead a coalition that is studying how health care providers can conduct more appropriate short-term medical missions overseas and how the efforts can be more respectful to the local culture and more responsive to in-country health needs.

Four international health experts are leading the effort, which is called the Coalition for Responsible Engagement in ShortTerm Global Health. About 30 additional individuals support the work.

The coalition is coordinating overseas research on the effectiveness of medical missions, building relationships with the World Health Organization, organizing a symposium and developing a repository of resources. All activities are aimed at ensuring that medical providers’ short-term medical missions are responding to the needs of host countries and people appropriately, and in the most beneficial way.

The leaders of the coalition are Bruce Compton, CHA senior director of international outreach; Myron Aldrink, chairman of the Medical and Surgical Skills Institute in Ghana; Judith Lasker, a sociology and anthropology professor at Lehigh University in Bethlehem, Pa.; and Dr. Shailey Prasad, executive director of the University of Minnesota School of Public Health in Minneapolis.

The four formed the coalition about two years ago to work together to identify ways that short-term medical missions can deliver medical and clinical services, training and products in a manner that optimizes the benefit to the host facility, organization or country.

For instance, medical professionals on short-term medical missions sometimes don’t understand the local culture or health resources. There’s not always attention to

Resources For CHA resources on short-term medical missions, visit chausa.org/international outreach/Overview. Click on “Medical, Mission & Immersion Trips” in the lefthand column.

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Dr. Paa Kobina Forson, second from left, and Henrietta Ntow, center, provide training to three anesthesiologists from Guinea in October 2018 at the Korle Bu Teaching Hospital in Accra, Ghana. Forson is an emergency specialist at Komfo Anokye Teaching Hospital in Kumasi, Ghana, and Ntow is an emergency nurse at that facility. According to a member of the Coalition for Responsible Engagement in Short-Term Global Health, this photo of in-county clinicians provide training to other clinicians within the same region illustrates an optimal approach to addressing health care gaps in countries with pronounced needs.

setting up follow-up care after the initial medical services are delivered. There may not be a focus on the sustainability of the work in a host country that likely lacks the infrastructure and financial resources to sustain short-term gains made by visiting medical professionals. And the high cost of short-term medical missions — travel costs alone can run in the many thousands of dollars — must be weighed against the resulting benefits. Money potentially could be better spent building up capacity for medical services in the host country.

The coalition says such aspects of aid should be thought through and addressed.

Coalition members want organizations

that are conducting medical missions overseas to analyze their approaches from the perspectives of the recipient organizations and people, and to perhaps reconsider their care delivery models, given

those perspectives.

To help organizations to do this, the coalition is: Working with in-country researchers in Ghana, Uganda and Guatemala to understand more clearly host countries’ perspectives on medical missions. This includes extensive interviewing in communities that host short-term medical missions. The researchers will provide reports on their findings, and the coalition will use those reports to inform protocols on shortterm health care delivery.

Coordinating with WHO to advance what WHO calls “Twinning Partnerships for Improvement.” Those are mutual partnerships of organizations that work together to respond to pressing health needs.

Holding a symposium in May 2020 in Geneva, Switzerland, to develop a “global declaration” of principles for global health work. The symposium will bring together representatives of universities, health care systems, government agencies and other organizations involved in global health.

Developing white papers and other publications exploring this topic.

Creating an online library of those papers and other resources.

Information is available from Compton at bcompton@chausa.org, or Aldrink at the_aldrinks@hotmail.com.

Coalition sets out its guiding principles for medical missions Core values of the Coalition for Responsible Engagement in Short-Term Global Health Empowered host country and community Humility cultural sensitivity and respect for all involved Mutual Partnership with bi-directional inputs and learning Compliance with applicable laws, ethical standards and codes of conduct Sustainable programs and capacity building Accountable for actions

Upcoming Events from The Catholic Health Association Tax Exemption Issues Webinar A CHA webinar co-sponsored

by Vizient Sept. 4 | 2 – 3 p.m. ET

Environmental Networking Conference Call Sept. 5 | 2 p.m. ET

Webinar: Transforming Spiritual Care Research into Policy and Practice Sept. 18 | 1 p.m. ET

Essentials for Leading Mission in Catholic Health Care In-Person Meeting: Sept. 9 – 11 Plus Five Online Sessions

Diversity and Disparities Networking Call Sept. 26 | 1 – 2 p.m. ET

The Urgent Need to Heal Our Home: A CHA Feast of St. Francis Webinar Sept. 26 | 3 – 4 p.m. ET Sponsored by CHA and the Catholic Climate Covenant

Sponsor Formation Program for Catholic Health Care Session One: Oct. 10 – 12 Chicago (Invitation only)

Community Benefit 101: The Nuts and Bolts of Planning and Reporting Community Benefit

Chase Park Plaza Royal Sonesta Hotel St. Louis Oct. 15 – 16

Deans of Catholic Colleges of Nursing Networking Call Oct. 22 | 3 – 4 p.m. ET

Graphic Design Les Stock

International Outreach Networking Call Nov. 6 | 3:30 p.m. ET

Faith Community Nursing Networking Call Dec. 10 | 3 p.m. ET

Human Trafficking Networking Call Dec. 12 | Noon ET

2020 International Outreach Networking Call Feb. 5 | 3:30 p.m. ET

Diversity and Disparities Networking Call Feb. 19 | 1 – 2 p.m. ET

Critical Conversations 2020 Feb. 12 – 13 Atlanta

A Passionate Voice for Compassionate Care® chausa.org/calendar

September 1, 2019 CATHOLIC HEALTH WORLD

3

Extra helmet padding meant to soften hard hits to young footballers

By LISA EISENHAUER

Ashley Baker is thrilled that the football players in the grade, middle and high school programs for BON SECOURS Paducah, Ky., pubMERCY HEALTH lic schools have an extra layer of protection for their heads this year, especially since three of those players are her boys.

Spurred by a request from Baker, Mercy Health – Lourdes Hospital donated about 300 Guardian Caps to the football programs.

The caps are thickly padded and fit over Baker helmets to provide an added layer of protection for players’ heads. The caps cost about $55 each.

Guardian Sports, the manufacturer, claims they reduce the impact of crashes by 33 percent.

“They will wear them for every practice,” Baker said. “They are not approved for games, pretty much because not everybody has them. But the hope is that soon all schools are in them.”

Baker, who is clinical manager for special procedures at Lourdes Hospital in Paducah, said she requested the cap donation after learning that similar helmet covers are used by many college programs.

“If we’re protecting grown men, I want our babies protected, too,” she said.

Kid tested And as the mother of three players age 8-14, coordinator for the Paducah program for grades 3-6 and a high school football booster, she was ecstatic that her request was fulfilled. “It just makes me incred-

Dignity Health Specialty Pharmacy From page 1

definition for specialty drugs, they typically target serious, chronic diseases and can deliver life-altering benefits or even cure select diseases. The category includes biologics, which are derived from living cells; many of the compounds are infused or injected. The average annual wholesale cost of certain specialty drugs can run in the low six figures.

Medicare defines specialty medications as any drug that costs $670 or more per month, and it puts them in a tier that carries a significantly higher co-pay for patients.

The Kaiser Family Foundation says that Medicare Part D drug benefit enrollees can be on the hook for several thousand dollars in annual out-of-pocket costs for select specialty drugs.

According to the Pharmaceutical Care Management Association, specialty drugs most often share these characteristics: Prescribed for complex, chronic medical conditions or rare diseases Require additional patient education, adherence or support Have unique storage or shipment requirements Are not stocked at a majority of retail pharmacies

High touch To address these difficulties, San Francisco-based Dignity Health, part of the CommonSpirit Health system, has launched Dignity Health Specialty Pharmacy, a joint initiative with Shields Health Solutions.

The specialty pharmacy offers patients with chronic conditions ongoing personalized

ibly proud that Mercy Health helped me accomplish this,” she said. “It means so much personally and professionally. It’s a huge deal for me.”

Mercy Health Foundation – Lourdes provided the money to buy the caps. Foundation President Jessica Toren said the foundation usually exclusively funds projects and equipToren ment purchases within the hospital. But the foundation decided this request was a good fit for its mission because “we could be helping these players potentially avoid lifelong injuries,” she said.

Toren was on hand when the caps were given to players in July. She told them the new gear was like “airbags for your head.”

Some of the middle school players told her they had already tested the caps by hitting each other in the locker room and could feel the difference.

Paducah, Ky., public school football players try on Guardian Caps donated by Mercy Health – Lourdes Hospital. Athletes will wear the impact-reducing cushions that strap over their helmets only during practices for the time being, but at least one football coach says he thinks extra head protection will become standard equipment.

years after concussions were sustained, Couch said.

always have focused on teaching proper techniques — such as leading with the shoulder and not with the head — so players aren’t putting themselves at undue risk when they slam into each other.

But he said that even when using the best practices and precautions, contact sports are violent and pose risks.

“I don’t think in contact sports such as football or soccer you can really eliminate head trauma from the game, but I do feel like anything we can do, especially the use of the Guardian Caps, to reduce the potential risk of that happening, to me that’s nonnegotiable,” Smith said. “To me, that’s something we should all do.”

Smith said that while the caps are now relegated to practice, he’s hopeful that the extra padding will in time be embraced by the people who set the rules for sports equipment in Kentucky. He said they do not inhibit players’ performance.

“I think at some point something like this will become part of the standard equipment they use in the game,” he said.

Second-impact syndrome Dr. Jim Ed Couch, a neurologist who practices at Lourdes Hospital, said that studies show the hits athletes take in contact sports can pose shortand long-term risks.

An initial blow to the head can cause problems like headaches, dizziness, temporary memory loss and loss of Couch consciousness, Couch said. Another blow before the injury from the first one is healed can cause “secondimpact syndrome” — a condition in which fluid develops around the brain that is potentially fatal.

Studies also show that blows to the head can lead to chronic traumatic encephalopathy, a brain condition associated with personality changes and the development of dementia that might not show up until

Heads-up on risks He said despite recent findings about the dangers of head injuries, medical researchers don’t know what the threshold is for long-term conditions to develop. “That’s why we take concussions so seriously now,” he said.

Couch said he is all for anything that will lessen the chance of brain injuries for young athletes. Guardian Caps are “a good protective thing we can do just to ensure they’ll have less traumatic injury to the brain from the contact they’re going to be having.”

Jonathan Smith, head football coach and assistant principal at Paducah Tilghman High School, said with all the news coverage of head injuries linked to sports, even the youngest players seem to be aware of the risks.

He said looking out for the safety and well-being of players is the top priority for him and his coaching staff. They

support and access to select specialty drugs with an average co-pay of $10.

Shields Health Solutions, based in Stoughton, Mass., partners with Dignity Health and other health systems to help them build specialty pharmacies. In addition to providing complex medication, a specialty pharmacy can play an active role in managing patient care, providing patient support by answering questions and listening to concerns for the duration of the patient’s treatment. It is an approach to patient care that has become more common as the complexity and cost of specialty drugs have continued to increase.

“For us, it’s all about the patient receiving the care they deserve, really being there on the touch points along the continuum,” said Marla Weigert, a senior leader in pharmacy revenue services for CommonSpirit Health and president of the Dignity Health Specialty Pharmacy.

Weigert said that Dignity Health providWeigert ers had noticed that when their patients were discharged after receiving a diagnosis of cancer or undergoing an organ transplant, for example, there was often no way of knowing whether the patients had their prescriptions filled or were following through with their treatment plans.

Sometimes, patients can’t afford the drugs, she said. Other times, they are so overwhelmed by the diagnosis that they fail to get the prescription filled. Or they start on the drug regimen, experience a side effect, and stop taking it.

still receive the ongoing support from Dignity Health.

The partnership with Shields Health Solutions, which calls itself a specialty pharmacy integrator, provides Dignity Health with the “expertise and infrastructure to set up and eventually expand the program,” Weigert said. “They have been our educator, guide and adviser in putting the program in place.”

The specialty pharmacy also includes a 24-hour call center staffed by clinical pharmacists.

Under a new service being rolled out in select markets As of June, about 12,000 scripts

by Dignity Health, patients requiring specialty pharhad been filled through the specialty maceuticals will be able to receive ongoing personal pharmacy. support from pharmacy liaisons.

Dignity Health plans to bring another six markets into the started at St. Joseph’s Hospital and Medi- program this year. Anyone can use cal Center in Phoenix in July 2018 and the specialty pharmacy, but comexpanded to Sacramento, Calif., in March, monly, patients become aware of it patients develop a relationship with a phar- through physicians or clinics within the macy liaison who guides them through CommonSpirit Health system. their treatment plan.

Long-term plans include expanding The program employs about a dozen the program throughout Dignity Health’s liaisons, who are pharmacy technicians 41 hospitals in Arizona, California and with specialized training, Weigert said. As Nevada and other CommonSpirit Health the program expands, more liaisons will markets, particularly in places where it may be brought on board. The liaison checks be difficult to access expertise on specialty in with each patient about four times a pharmaceuticals. month; if there is a problem, the liaison The Pharmaceutical Care Management connects the patient to the care provider for Association predicts that specialty pharmafollow-up. cies will help save an estimated $250 billion Drugs are dispensed through the out- on the cost of specialty drugs and related patient St. Joseph’s McAuley Pharmacy on expenses over the next decade. the Phoenix campus, with delivery to the Weigert said that for Dignity Health, patient’s home in an average of 48 hours, the priority is creating a better health care Weigert said. Patients can get their spe- experience for patients and an expectation cialty drug prescriptions filled along with that their treatment outcomes will improve any standard retail medications they may under the program. be taking.

“I just think the model is fantastic and But they also can choose to order their what it does for our patients is fantastic,” drugs from their regular pharmacy and Weigert said.

Personalized attention Under Dignity Health’s program, which

leisenhauer@chausa.org

Courtesy of Dignity Health

Lourdes Hospital of Paducah, Ky., donates safety caps

4

CATHOLIC HEALTH WORLD September 1, 2019

Unconscious bias Working with some of the health system’s leaders, she crafted a training program for CHRISTUS that focused on its healing ministry. The training started with the system’s health, equity and inclusion council, which is headed by CHRISTUS President and Chief Executive Ernie Sadau, and then was provided to its executive council, which is comprised of the sysMurphy Robinson tem’s executive vice presidents and senior vice presidents.

Capeles said the training was an instant hit with this group. “They said this is so amazing and we shouldn’t be the only ones to receive it; instead every single leader in the organization who has a direct report should go through this training,” she said.

Murphy Robinson conducted training seminars for more than 2,000 managers in group sessions at Sadau CHRISTUS ministries in the United States over the course of a year ending this July. The sessions lasted about two hours and attendance was required.

Capeles

Photo courtesy of CHRISTUS Health

From page 1

Dr. Sam Bagchi, center, CHRISTUS Health senior vice president and chief medical officer, leads members of the CHRISTUS Health Equity, Diversity & Inclusion Council during a training session as they discuss the impact of bias on decision making and tools to re-direct the human brain toward more inclusive behaviors.

Capeles said that based on feedback she has received, the benefits of the training are being recognized. One worker told Capeles that after the training her manager was clearly more thoughtful during their interactions.

“Our goal and our intention by doing the training was to start the conversation, and we are already seeing that it is raising awareness and that is a win; it is a success

for all,” she said.

“We started with management and our associates before jumping into the clinical piece of this because if, on our own teams, we’re not exploring our own biases, our own reservations, if we’re not in touch with who we are, and how others perceive us, or what we say or what we do, then trying to impact patient care is going to be very difficult,” Capeles said.

CHRISTUS is working to ensure that the concepts and tools Murphy Robinson shared reverberate across the health system.

Once the training began, Capeles said CHRISTUS leaders realized that the health system’s push to identify and counteract implicit biases should be an ongoing project. To that end, the system has hired Warren Chalklen to the new position of manager of cultural competence, diversity and inclusion programs to continue that push across its ministries. As part of his work, he is leading dialogue sessions on diversity issues for employees.

Cultural adaptations At the same time, Pesquera said CHRISTUS is in the process of taking the training to its ministries in Latin America.

Whereas in its domestic ministries the focus was on biases that can be implicit for workers dealing with patients and colleagues whose cultural differences can be vast, Pesquera said that in Latin America the focus is more on gender diversity.

He is hopeful that the training that has served CHRISTUS well domestically, will translate equally well south of the border.

“We are creating a movement here,” Pesquera said. leisenhauer@chausa.org

Common ground Murphy Robinson and the diversity leaders who helped craft the training for CHRISTUS focused it on specific goals

including: Creating a common language and shared understanding of unconscious bias and the mechanisms of bias that are inherent in the way the brain is wired.

Improving understanding of the impact of bias on decisions and actions, such as hiring, promotion, development opportunities and mentoring.

Increasing staff’s ability to recognize biases when encountering differences and to mitigate their impact.

Providing staff with tools to manage biases more effectively and to continue to cultivate a culture of diversity and inclusion.

The examples used in the training mirrored situations that could come up in CHRISTUS facilities, such as a manager who picks teams for special hospitalrelated projects but consistently selects the same individuals, denying opportunities to other qualified workers.

Murphy Robinson said CHRISTUS saw the need to move beyond “blaming, shaming and pointing fingers” to helping staff understand that “essentially the brain is a bias-making machine.”

Among the tools she shared in her sessions were how to recognize triggers for biases and how to train the brain not to act on those triggers.

“People in health care want to make a positive difference and that’s where I found that folks can come into a training like this with some resistance, because no one likes to be told, ‘You’re biased’ — that’s not helpful,” Murphy Robinson said. “But when you can look at it instead from a neuroscience perspective, you can say, ‘Oh, my gosh, there’s these dynamics of the brain that I wasn’t even aware of. I now understand, and I can do something about it.’”

Increasing awareness Pesquera was among the early trainees.

He said the experience brought to the fore some of his own preferences, such as a special affinity for people who are, like himself, from Puerto Rico.

He said the training helped him appreciate that people have preferences that are subconscious, but nevertheless influence decision-making, particularly in stressful situations and where a quick response is required.

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TrinityKids Care

5

Komatsu, as they need to be well enough to use the controls and to have the interest. He hopes to eventually expand the offerings to appeal to more children.

sealing Layla’s fate when I heard the word ‘hospice,’” she recalls. But Layla had been through so much in nearly two years as a patient and still the doctors could provide neither answers nor hope of improvement.

With the gentle guidance of Komatsu and his staff, the family went from feeling like they were “giving up” on their daughter to the realization that by Komatsu providing comfort and “allowing her to go” when she was ready, they were protecting her from emotional and physical pain and suffering, according to Larissa.

One of the main goals of the TrinityKids Care program is to make it possible for children to spend whatever time they have left as comfortably as possible at home with their families and to be able to die at home peacefully. This is made possible with a team of pediatric experts, which includes doctors, nurses, social workers, home health aides and chaplains. The

Courtesy of the Sonnen family

From page 1

Layla Sonnen

hospice program enlists lots of volunteers who can lighten the families’ loads.

TrinityKids Care is currently recruiting tech-savvy volunteers to deliver virtual reality experiences to distract and amuse patients. A child need only put on a headset to take a trip to the International Space Station. So far, only a handful of children have been able to participate, according to

pice program, the benefits include “fewer hospitalizations, fewer ER visits, and they are more comfortable. It doesn’t change the reality of their terminal disease, but it does improve their quality of life.”

Family care TrinityKids Care staff are available Margaret Severin, a clinical supervisor 24-7 to support families, but the program with TrinityKids Care, says the care team does not provide around-the-clock home provides psychosocial support to families hospice nursing. The hospice staff visit at an emotionally fraught time. regularly and as needed, especially early “Many parents remain hopeful for the on when helping families adjust to havmiracle or just can’t allow ing a sick child at home. themselves to accept the They train parents and “Many parents inevitable, so we tread other caregivers how to remain hopeful lightly,” she says. “The operate medical devices chaplain does a lot of such as feeding pumps. for the miracle or art therapy as many kids They are also available by don’t have a concept of phone or text, so parents just can’t allow faith, but art helps them can reach out that way express how they are feel- themselves to accept for medical triage and ing and then the chapguidance. the inevitable, so we lain can help the parents in a manner acceptable No strangers here tread lightly.” to their faith practices, if For the Sonnens, hav— Margaret Severin any.” ing a team of people who Studies have shown came to them was one of that adult hospice patients have a higher the biggest stress reducers. “Before hosquality of life and live longer than patients pice, three days a week, I was piling Layla, who do not get hospice care, Komatsu the nurse, the pump, her medications, her says, adding that for children in his hos- stroller, everything, into my car and was driving all over Southern California for various treatments,” says Larissa. “Three days a week, every week, making sure I didn’t forget any medicine, making sure we had her diapers, change of clothes, blankets, extra food. It was very stressful.”

Being able to stay at home was a huge relief, says Larissa. “All of a sudden, everything just started showing up at the door.

That alone was just a miracle. I could just sit at home and hold her in my arms and be present with her. That was huge.”

Plus, everyone who came through the door knew Layla. “They already knew her story. I didn’t have to explain it. They were there 24-7 by phone or text. It didn’t matter what time. I didn’t have to pile Layla in the car and run to the ER at two o’clock in the morning,” Larissa says.

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The publication is a valuable resource for education and formation of boards, sponsors, senior executives and leadership teams in Catholic health care. It is also an educational resource for faculty and graduate students in bioethics, health care mission and leadership programs.

C H AU SA .O RG/S TO R E

Heartbreakingly beautiful Layla died at home on July 8, 2017. She had turned 2 in April. Her mother held her, and her father and 4-year-old brother were next to her. Had she not been on hospice, this peaceful passing wouldn’t have been possible, says Larissa. In a hospital, “there would have been machines and buzzers and beeps. We were home in our bed with her in our arms, and it was just so loving and so compassionate and beautiful in a heartbreaking way.”

Layla’s neurological condition left her unable to see. Her family donated her corneas, giving sight to two recipients.

Two of her heart valves were used in successful transplant surgeries. The family has allowed Layla’s story to be told to raise awareness of, and philanthropy for, TrinityKids Care’s pediatric hospice program and for the Children’s Hospital Los Angeles, where she received the bulk of her medical care.

Incalculable loss Komatsu says clinicians can treat the physical pain of a child’s terminal illness with medication, but the suffering of families requires empathy, compassion and love.

“The emotional, psychological, and spiritual pain when losing a child is just unbelievable and unimaginable for those of us who have never gone through it.

What I stress to my staff and keep reminding myself is that we can’t take away that pain, we can’t fix that pain, but what we can do is bear witness to that pain. We can continue to show up, and we can be present in a kind and loving way to just let that child and that family know that we’re going to walk beside them no matter how bad things get. It seems like not enough, but it turns out to be very therapeutic, and it’s the best we can do for this unimaginable situation.”

6

CATHOLIC HEALTH WORLD September 1, 2019

USCCB offers resources for caring for patients who have undergone female circumcision

By JULIE MINDA

The United States Conference of Catholic Bishops has developed materials to educate clinicians and others about the practice of female genital mutilation and to guide clinicians in treating these patients with cultural sensitivity and respect.

The resources also are intended to educate women about what to expect when they undergo gynecological and obstetrical care in the U.S. The resources warn of the medical risks related to female genital mutilation, which also is called female circumcision.

The resources are on the CHA website: chausa.org/cutting.

Female genital mutilation is illegal in the U.S. and it is condemned globally as a serious violation of human rights that carries physical and psychological consequences for adolescent girls and women. Because female circumcision is extremely rare in the U.S., medical practitioners encountering a patient who has had the procedure may not know how best to address the patients’ needs.

To create the educational and awareness-building materials, USCCB’s Migration and Refugee Services partnered with local Catholic Charities resettlement agencies. It engaged with impacted communities to gain a better understanding of the scope of the mutilation practices while also learning more about the impacted women’s needs. Through focus groups, a diverse representation of refugee women from all over the world shared stories and concerns about the practice, according to the USCCB. The materials published by the bishops’ conference include fact sheets on mutilation for health care practitioners and child welfare professionals and health information for women who have undergone genital cutting.

The materials explain forms and degrees of female genital mutilation.

The resources for clinicians describe the potential health risks associated with genital mutilation and explain how to approach the subject with patients in a culturally sensitive manner. Patients may be unfamiliar with their own anatomy and come from cultures where gynecological and prenatal care are not the norm.

The materials for patients explain how their altered anatomy may impact their gynecological health, including during pregnancy, delivery and postpartum.

USCCB’s Migration and Refugee Services office created the materials under their Bridging Refugee Youth and Children’s Services program, which aims to strengthen the capacity of refugee-serving and mainstream organizations across the U.S. The U.S. Department of Health & Human Services’ Office on Women’s Health provided grant funding for the USCCB’s awareness-building and education around female genital mutilation.

Although health care providers and their patients are the primary audience, the materials also are aimed at child welfare professionals, educators and immigrant communities where female circumcision may be practiced.

According to the World Health Organization, female genital cutting has been documented in 30 countries, mainly in Africa, the Middle East and Asia. It is performed for a variety of cultural, religious and other nontherapeutic reasons. It is usually done before girls are age 15. Materials from the USCCB suggest that clinicians ask their adult patients who have undergone female circumcision whether they intend to have their daughters undergo the ritual, and that the clinicians explain the health implications of the practice.

Information from WHO indicates the degree of mutilation correlates with the potential adverse health consequences for women, especially during pregnancy,

Pregnancy and Childbirth for Women Affected by Female Genital Cu�nng Being pregnant or trying to get pregnant in a new country can feel overwhelming and scary, especially if you are a woman affected by Female Genital Cu�ng (FGCn. American cultural norms of medical care might be very different from your own country. Refer to this resource as a guide for naviga�ng your pregnancy so that you and your baby remain as healthy as possible.

Any�me you have further �ues�ons, ask your doctor. Remember, you have a right to be treated with sensi�vity, dignity, and respect from those providing medical care. For addi�onal resources for women affected by Female Genital Cu�ng (FGCn, visit BRYCS Community Conversa�ons.

Tips for Talking with your Doctor about FGC and Childbirth 

Ask for a trained female interpreter that you feel comfortable with. This is a special and serious �me for you and you have a right to experience the benefits of all aspects of medical care in the U.S., including the ability to communicate.



You may not know what type of circumcision you have, which is okay. Let your doctor know you are circumcised and they can help you understand the type you have, as well as any implica�ons it might have on your pregnancy and childbirth.



Ask your doctor to use visuals and pictures when explaining the female anatomy for FGC. This can help with any language barriers, and provide clear informa�on about the differences.



A�end a birthing class. Usually, for a fee, your local hospital will offer birthing classes for expectant mothers and their spouses. Even if you’ve already given birth, it can help prepare you for what to expect when giving birth in the U.S.



Be clear with your doctor about what you want. Many women prefer to give birth vaginally – if this is your preference let your doctor know as early on in the pregnancy as possible. If you underwent Type 3 FGC ask your doctor about deinfibula�on.

The text above is an excerpt from a brochure to educate women whose anatomy has been altered by Key Words Related to Pregnancy genital mutilation.

The United States Conference of Catholic Bishops developed this and other patient Cesarean Birth (C‐sec�oon) Most pregnancies result in a vaginal delivery, however some factors may necessitate a C‐sec�on, whereare thetranslated baby is delivered surgically through the abdomen. who have 3 FGCtheir are materials, which in multiple languages, to helpWomen women talk toundergone cliniciansType about at‐risk for complica�ons during pregnancy and childbirth, and should consult with their doctor about deinfibula�on to gynecological and obstetrical care. The materials also include fact sheets for clinicians and child welfare facilitate a vaginal birth.

Dila�oo: The extent to which the cervix has opened in prepara�on for childbirth. It is measured in cen�meters, with full professionals. dila�on being 10 cen�meters.

Epidural: A shot administered by an Anesthesiologist that delivers con�nuous pain relief to the lower part of your body while allowing you to remain fully conscious.

You will be unable infants to walk around a�erbe receiving an epidural.risk for delivery and the postpartum period. may at higher

intra-

Induced Labor: A doctor bringsbeen labor about through medicine, contrac�ons, the cervix for medicalhealth Women who have mutilated can s�mula�ng uterine death ororopening lifelong adverse purposes when labor does not occur naturally. Common reasons this might be done is because of uterine infec�on, not enough amnio�c �uid, or high blood pressure. be at heightened risk for wound infections consequences.

Midwife and Doula: A trained health professional specializes in helping andsays partnering with women to provide the and hemorrhaging during delivery.who Their WHO about 200 million girls and necessary care and support during pregnancy, labor, birth, and a�er birth. The difference is that doulas are not able to deliver babies.

women alive today have undergone genital mutilation. The USCCB materials say an estimated 513,000 girls under age 18 in the U.S. have experienced or are at risk of mutilation.

Immigrants to the U.S. who are part of cultures that practice genital cutting may be unaccustomed to talking about gynecological matters or accessing gynecological services. The USCCB resources say it is important that clinicians be sensitive to patients’ fears and discomfort in broaching the subject with a medical professional. The materials say patients may feel more comfortable with a female physician and recommend that clinicians involve female interpreters in these patients’ care when appropriate. Conversations with patients should be respectful and protect patients’ dignity.

Clinicians should clearly describe services before providing them, use visual aids when describing gynecological terms and procedures, and take extra time to explain the potential consequences of medical options. The resources explain how to approach especially sensitive topics such as advising women whose cutting was reversed for a delivery, but who wish to restore the cutting postdelivery. jminda@chausa.org

Obstetrician: Refers to the types of doctor who specializes in pregnancy, childbirth, and reproduc�ve health. O�en they are referred to as an “OB.” Some�mes they may also be called an “OB�GY�” if they have addi�onal training in gynecology, which is medical care specifically for women, focused on their reproduc�ve system.

Get the Basics

Trimester: A full term pregnancy lasts 40 weeks and is divided into three phases, called “trimesters”. The first trimester is from weeks 0‐12, the second trimester lasts from week 13‐28, and the third trimester is weeks 29‐40.

Ultrasound: These allow your doctor to visually see your baby to monitor normal development. They are usually performed between weeks 18 and 20 to assess normal organ development and determine the sex of the baby, if desired.

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September 1, 2019 CATHOLIC HEALTH WORLD

7

KEEPING UP

Stricker

Endsley

PRESIDENT/CEO

Janice G. Murphy to president and chief executive of St. Vincent Charity Medical Center of Cleveland, from senior vice president of mission and ministry at the hospital’s parent Sisters of Charity Health System of Cleveland. Murphy succeeds Dr. David Perse, who stepped down. Perse will continue as an employed physician of St. Vincent Medical Group.

ADMINISTRATIVE CHANGES

Organizations within St. Louis-based Ascension have made these changes: Dr. Richard Fogel to chief clinical officer of Ascension, Clinical and Network Services.

Daniel Stricker to president of Ascension Post-Acute Services. Ryan Endsley to chief operating officer of Ascension Living, the eldercare division of Ascension. Endsley holds the position Stricker vacated for his new role. Dr. Jewel Mullen to director of health equity at Ascension Seton in Austin, Texas, and associate dean for health equity at Dell Medical School at the University of

Treanor

Hochman

Texas at Austin.

Joline Treanor to executive vice president of people and culture for PeaceHealth of Vancouver, Wash.

Organizations within Chicago-based CommonSpirit Health have made these changes: Monica Majors to vice president of communications and marketing for the San Francisco Bay Area service area of Dignity Health. Jennifer Svihus to president and chief philanthropy officer for the Sequoia Hospital Foundation of Redwood City, Calif.

Barbara Halford to director of strategic planning for CHI St. Vincent of Little Rock, Ark.

HONOR

Dr. Rod Hochman is chair-elect designate for the American Hospital Association.

He is president and chief executive of Providence St. Joseph Health in Renton, Wash.

Historic ties

St. Dominic Health Services of Jackson, Miss., in July joined the five-hospital Franciscan Missionaries of Our Lady Health System of Baton Rouge, La., and the Franciscan Missionaries of Our Lady congregation assumed sponsorship of the one-hospital system from the Dominican Sisters of Springfield, Ill. Here, Sr. Rebecca Ann Gemma, left, the Dominican Sisters’ prioress general, and Sr. Barbara Ann Arceneaux, the Franciscan Missionaries of Our Lady – North America’s regional minister, stand before a depiction of Sts. Dominic and Francis of Assisi. It is said the men met in Rome in 1216 and began a friendship.

CHA Senior Director, Mission Integration and Innovation This position provides thought leadership in the areas of mission innovation and integration. As an interdisciplinary position, the focus is to identify, develop, and coordinate programs, products, and services for ministry leaders responsible for mission integration.

Additionally, this position is responsible for connecting mission executives through committee meetings to facilitate the development and sharing of successful practices in these areas.

Travel is required.

The Catholic health ministry is the largest group of nonprofit health care providers in the nation.

It is comprised of more than 600 hospitals and 1,600 long-term care and other health facilities. To ensure vital sponsorship and a vibrant future for the Catholic health ministry, CHA advocates with Congress, the administration, federal agencies, and influential policy organizations to ensure that the nation’s health systems provide quality and affordable care across the continuum of health care delivery.

Minimum qualifications: CHA is seeking candidates with a minimum of five years working in a leadership position in mission integration at a local, regional, or national health care level. This position requires a minimum of a master’s degree in theology or related field (or equivalent work experience).

To view a more detailed posting for this position, visit the careers page on chausa.org.

Interested parties should direct resumes to: Cara Brouder, Senior Director, Human Resources Catholic Health Association 4455 Woodson Rd. St. Louis, MO 63134 Phone: 314-427-2500 For consideration, please email your resume to HR@chausa.org

Markiewicz

Gleason

Boryszak

Urlaub

Bratko

Sperrazza

Catholic Health of Buffalo, N.Y., reorganizes leadership team Catholic Health of Buffalo, N.Y., is reorganizing its senior leadership team. Catholic Health President and Chief Executive Mark Sullivan says the new leadership structure “will build on the high-quality care that already exists within our system and drive development, innovation and efficiencies that will have an even greater impact on the health of our community.”

The executive changes include: Joyce Markiewicz to chief business development officer for Catholic Health, from president and chief executive of home and community-based care.

Tom Gleason to senior vice president of home and community-based care, with responsibility for skilled nursing facilities and home care agencies. Gleason had

been the system’s chief operating officer for home and community-based care.

Marty Boryszak to senior vice president for acute care services. Boryszak was president and chief executive of Catholic Health’s Sisters of Charity Hospital.

Gary Tucker will retire as president and chief executive of Mount St. Mary’s Hospital in Lewiston, N.Y., which Catholic Health acquired in 2015.

CJ Urlaub to Catholic Health senior vice president of strategic partnerships, integration and care delivery for Niagara County.

Urlaub was president and chief executive of the system’s Mercy Hospital of Buffalo.

Urlaub also will assume the presidency of Mount St. Mary’s Hospital as part of his Niagara County responsibilities.

Eddie Bratko to president of Mercy Hospital of Buffalo, from its chief operating officer.

John Sperrazza to president of Sisters of Charity Hospital of Buffalo and its St. Joseph Campus in Cheektowaga, N.Y. He was chief operating officer at Sisters Hospital.

Catholic Health has five hospital campuses and a network of long-term care, ambulatory care and home care services and facilities in Western New York. According to information from the system, the executive changes will enable the leaders to expand upon Catholic Health’s presence and offerings.

Carmelite Sisters to assume sponsorship of eldercare campus in Lowell, Mass.

The Sisters of Charity of Ottawa plan to transition sponsorship of a northeastern Massachusetts eldercare campus to the Carmelite Sisters for the Aged and Infirm, potentially by the end of this year or by early 2020. The D’Youville Life & Wellness Community in Lowell, Mass., is to become part of the Carmelite System, though it will retain its existing boards, leadership team and philanthropic foundation structure.

The Sisters of Charity of Ottawa, also known as the Grey Nuns of the Cross, together with the D’Youville governing board, had sought out a new sponsor for the facility because the sisters’ numbers have been declining, according to a public letter from D’Youville to community members.

The congregation and the board wrote that they undertook a “lengthy period” of careful deliberation and examination of potential sponsors. They selected the Germantown, N.Y.-based Carmelite Sisters because of the alignment between the two congregations’ principles, values and charism, and because the Carmelite Sisters ensured that under their sponsorship the D’Youville facility would retain much independence and would not have to change the types and levels of its services.

Founded in 1960, D’Youville today

includes a 208-bed skilled nursing facility, 33 short-term rehabilitation and transitional care beds, 63 independent living apartments and 60 assisted living and memory care apartments.

Under the propsed transaction structure, D’Youville would join the Carmelite System under the Carmelite Sisters’ sponsorship, retain its Catholic identity and continue to adhere to the Ethical and Religious Directives for Catholic Health Care Services. According to information from the D’Youville website, the transaction would not be a merger, nor an acquisition, nor would money change hands.

That website says that under the Carmelite Sisters’ sponsorship, “D’Youville will continue to be D’Youville” — “there will be no changes to D’Youville’s workplace culture, or level of services to residents and tenants.” All past, present and future charitable contributions made to the campus and its foundation would remain with D’Youville in Lowell. D’Youville President and Chief Executive Naomi Prendergast and the facility’s other leaders would retain their roles and the facility’s five governing boards would remain intact. (There are separate boards for the main campus, the foundation, the skilled nursing unit, the

independent living unit, and planning and development.)

At least one Sister of Charity will remain on the main campus’ board during a threeyear transition period after the transaction closes, according to D’Youville.

The Vatican; Massachusetts’ Department of Public Health, Division of Health Care Facility Licensure and Certification; and the U.S. Department of Housing and Urban Development must approve the sponsorship change. Approvals are expected to take three to six months, according to a release on the transition.

The Carmelite System includes 14 eldercare facilities in Florida, Illinois, Iowa, Kentucky, Massachusetts, New York, Ohio and Dublin, Ireland. In Massachusetts, the Carmelite System has facilities in Framingham, Lenox and South Boston.

In the release on the transaction, Carmelite System President and Chief Executive Paul MacGiffert said as part of a combined organization, the system’s eldercare facilities can leverage their strengths to better respond to elders’ emerging needs. Prendergast, D’Youville’s head, said the sponsorship transition “will bring about new and promising opportunities to enhance D’Youville’s future level of services.”

8

CATHOLIC HEALTH WORLD September 1, 2019

Residential care for young adults The center cares for what its Chief Executive Patricia Tursi calls the “most fragile of fragile” young patients. All of them have chronic conditions and are profoundly disabled.

Few of these children can talk, walk unassisted or eat by mouth. Of the 169 patients there in early Tursi August, about 65 were reliant on ventilators.

In years past, patients like those cared for at Elizabeth Seton Children’s seldom survived into adulthood, Tursi says, but advances in technology and specialized care are changing that.

But once these patients age out of centers like hers, the specialized care that has kept them alive often ends, Tursi says. Few adult care centers have the equipment and staffing needed to support these patients.

“It just sort of happened overnight,” Tursi says of the aging out crisis. “We feel like we woke up and now all of a sudden we have this great joy, which is all these kids transitioning into adulthood, but nowhere for them to go in a safe way.”

A worthy cause So Tursi and other directors of Elizabeth Seton Children’s have come up with a proposal to build a center with beds for 48 young adults similar to the one they are running now. They even have a proposed site: 4.5 acres right next door that they hope to buy.

Tursi isn’t fazed by the $45 million project price tag. For one thing, her board at Elizabeth Seton Children’s is highly supportive of the proposal.

“Everybody’s on board,” confirms Rachel Amar, a board member and the mother of a longtime resident at the pediatric facility.

Tursi says Cardinal Timothy Dolan, archbishop of the Archdiocese of New York, encouraged her to apply for a grant from the Mother Cabrini Health Foundation, a Roman Catholic charity that gives away up to $150 million a year. Its mission, its website says, “is to improve the health

Chris Marksbury/Courtesy of Elizabeth Seton Children’s Center

From page 1

Rachel Amar poses with her son Max at the “Under the Sea”-themed prom held in June for residents at the Elizabeth Seton Children’s Center.

and well-being of vulnerable New Yorkers, bolster the health outcomes of diverse communities, eliminate barriers to care and bridge gaps in health services.”

The proposed residential health care facility for medically fragile young adults checks all those boxes. Tursi’s grant application asks for $20 million over two years. She hopes to hear back by the end of the year.

As soon as funding is in place, Elizabeth Seton Children’s will apply to the New York State Department of Health for a certificate of need. Tursi expects to secure that authorization and to get the support of New York’s Medicaid regulators.

“They’ve invested in our care, in our programs, in the children, in the families,” she says. “They don’t want any undue harm coming to them.”

First in its class Jill Montag, public information officer for New York’s Department of Health, would say only: “We do not publicly comment on specific proposals that are before the department for review. The department is exploring options regarding developing long-term care models for young adults.”

Tursi says the Elizabeth Seton Children’s long-term care facility for young adults would be the first of its kind in the nation. It would provide care to patients up to age 35.

Tursi and Carolyn Ryan, vice president of quality at Elizabeth Seton Children’s, say they’ll base the proposed facility’s care models on practices that have proven highly successful at the pediatric facility.

“You see these kids just thriving,” Tursi says of patients at Elizabeth Seton Children’s. “The medical community looks at it and says there’s no medical reason why this child is still with us because of how debilitating and complex these different genetic disorders and conditions these children have are, and yet they’re doing really well.”

The pediatric long-term care facility has been in operation for 31 years. It has 750 on staff, including five full-time pediatricians. It has nurse practitioners on-site around the clock. Its registered nurse to child ratio is 1 to 4. Its respiratory therapist to child ratio is 1 to 8. The average length of stay for its patients is 4.5 years. Many of its residents come straight from neonatal intensive care units.

“We’re like a little PICU (pediatric intensive care unit), to some degree,” Ryan says.

Some children stay for a year of intensive rehabilitation services following inpatient treatment at an acute care hospital, and progress enough to be safely discharged to the home. At the other end of the spectrum are children who, because of the severity of their medical conditions, live at the center for their entire childhoods.

So, in addition to the tiny months-old patients at Elizabeth Seton Children’s, there are many adolescents, teens and young adults. Amar’s 17-year-old son Max is among them. She says she’s worried since he was 15 about where he will go once he ages out of the center. He’s lived at Elizabeth Seton Children’s since 2006. He was the first patient admitted to its pediatric long-term ventilator program.

Amar says the care he gets is superb.

“It’s so special,” she says. “I go every day and I see it.”

Tender loving care Beyond the specialized medical care needed by Max, who was born with a brain stem incapable of directing normal breathing and swallowing, Max’s caregivers provide personal care that keeps the teenager content and comfortable.

As part of Max’s daily bath ritual, aides blow-dry his long hair, which Amar donates every couple of years to Locks of Love. That charity makes wigs for children with medical hair loss. When Max’s locks are long, the aides braid them. “Every day I come in and he has a different type of braid,” Amar says. “I don’t know how to do hair at all. I’m so impressed.”

Amar doesn’t see a home other than the young-adult center that Elizabeth Seton Children’s is proposing as an option for Max once he hits 22. “It has to happen,” she says.

Ryan and Tursi feel a similar sense of faith and urgency. Once young adults are discharged, the center has no say in their care. And while the center has tracked the statistics on their mortality, it hasn’t tracked the specific causes of the former patients’ deaths. The severity of some patients’ disabilities may put them at higher risk for lethal complications.

But Tursi and Ryan suspect, regardless of what any death certificate might say, that “broken-heart syndrome” is often a factor.

For many patients, being forced out of the center means being forced out of the only home they have known for years.

More than 50 of the children’s center’s current patients will age out of the pediatric facility within the next five years. “Our absolute goal is we’d like to be able to open a new facility in three to four years,” Tursi says. leisenhauer@chausa.org

‘Mayor of Elizabeth Seton’ cheerleads for residential facility for young adults S

tephanie Gabaud is on a mission. At 21, she is within months of technically “aging out” of Elizabeth Seton Children’s Center in Yonkers, N.Y. That will officially happen on her next birthday, Dec. 14.

For now, Gabaud has a reprieve from state rules that say the center can only care for patients 21 and younger. Officials with Medicaid, which funds Gabaud’s care, have agreed to let her stay on at the center where she has spent most of her life.

The length of the reprieve is indefinite.

But Gabaud is determined that she’ll leave Elizabeth Seton Children’s on only one condition, and that’s if it’s to move into the longterm care facility for medically fragile young adults proposed for a tract of land adjacent to the pediatric long-term care center.

Gabaud has become the unofficial spokeswoman for the proposed facility. She talks the project up to anyone who asks about it, including the mayor of Yonkers, news reporters and Cardinal Timothy Dolan, leader of the Archdiocese of New York.

Cardinal Dolan is a supporter of Elizabeth Seton Children’s. He made a stop there this spring during his Lenten visits and he

Stephanie Gabaud

touted its plan for the residential facility for medically fragile young adults in front of the TV cameras that followed him. He’s also a fan of the proposal’s spokeswoman.

They have met several times. He calls her “the mayor of Elizabeth Seton.”

He’s not the only eminent church leader Gabaud has made an impression on. She was in audiences during the visits to New York of both Pope Benedict XVI and Pope Francis. Both times, she managed to get a personal blessing.

Patricia Tursi, chief executive of Elizabeth Seton Children’s, says getting those blessings was no

small feat for a tiny woman like Gabaud, whose head barely rises above the top of the hot pink wheelchair she uses.

Tursi vividly remembers when Gabaud met Pope Francis in 2015 at St. Patrick’s Cathedral in New York City.

Gabaud had been sick in the days just before the pope’s visit with an infection so severe that surgeons had replaced the rods that supported her back, which was severely compromised at birth by spina bifida. Tursi says no one was sure Gabaud would be able to sit in her wheelchair and attend the service, but she insisted on going.

As the pope greeted some VIPs across the aisle from Gabaud, Tursi suggested the young woman move her wheelchair forward a bit for a better view.

The chair brushed the pant legs of some of the pope’s guards.

“And they just startled and looked and realized that somebody’s there and Pope Francis felt it and he turned and in the corner of his eye he saw her and felt her … He turned around and she flew her arms up and he came right over to her,” Tursi recalls.

Gabaud says her encounters with Popes Benedict and Francis have been among the highlights

of her life, along with her friendship with the actress Angela Bassett.

“She’s someone that I admire and look up to,” Gabaud says of her glamorous pal. The two connected years ago with the help of the Make-A-Wish Foundation and have stayed in touch since. In February, Bassett invited Gabaud to an American Heart Association event where the actress was accepting an award.

Tursi says Gabaud is a singularly effective champion for the

proposed long-term care facility for medically fragile young adults.

She radiates joy and people relate to her.

“They’re like, ‘Yeah, I get this and I want to be able to help,’” Tursi says.

Gabaud says of her fellow residents at Elizabeth Seton Children’s: “I know what these kids go through every day, and we want these kids to have a better quality of life.”

— LISA EISENHAUER

Actress Angela Bassett shared photos of her friend Stephanie Gabaud on her Twitter feed last year. Gabaud dressed as a police officer for Halloween because Bassett plays one as the star of the FOX’s “9-1-1.”