This was originally posted in CommonWealth Magazine. Read the full post here.
JAMES WOODBERRY, wheelchair bound and severely depressed, struggled to find hope. Overwhelmed by his condition and a complex health system, the 80-year-old Boston resident and his family faced a grim future. It was only after several failed attempts that he came across a program equipped to handle his needs — the Program of All Inclusive Care for the Elderly, or PACE.
PACE’s vision is simple, allowing seniors who qualify for nursing home level of care to age in place, at home. The program started as a federal demonstration project in 10 locations across the US in the late 1980s. By 1990, it became a permanent provider for individuals covered under both Medicare and Medicaid, the so-called “dual eligibles.” Structured as an adult day center, members have access to medications, primary care providers, social services and more, every day of the week.
This year, East Boston Neighborhood Health Center, one of the 10 pilot centers, celebrates 30 years of partnership with PACE. Called “Neighborhood PACE,” the East Boston health center’s program is Massachusetts’ longest running. Noteworthy is the housing component unique to Neighborhood PACE. The health center is a long-time partner of the East Boston Community Development Corporation. Together, they converted a former East Boston school into the first PACE center in Massachusetts to offer housing in 2007.
Despite the program’s long history, PACE operates under the radar. Manny Lopes, president and CEO of the East Boston health center and chairman of the board of Boston’s Public Health Commission, wants this to change.
PACE providers deliver integrated, patient-centered care that values personal choice. Dr. James Pedulla, medical director of East Boston’s PACE since its inception, knows that the care and time he devotes to patients is uncommon in most health care settings today. For him, a rewarding feature of the program is direct access to an interdisciplinary network. At PACE, everyone from drivers to clinical providers are part of the team.
Woodberry, a member of Neighborhood PACE for over 10 years, is one of the program’s biggest champions. For him, the program is a blessing. “I thank God I am in a place that I get the kind of care I get, the kind of caring that I get,” he said.
A former professional football player, Woodberry found his inability to walk a constant source of anguish. With the support of his PACE team, Woodberry regained his ability to walk and met his personal goal to play 18 holes of golf – twice.
A typical day for Woodberry starts with waking up in his own apartment and going down to the PACE center, which operates in the same building, for breakfast and conversation with other PACE enrollees. Woodberry gets his medications dispensed on site by one of the staff members, is able to participate in center activities, and meet with his primary care provider or another member of the clinical team.
For Woodberry, the adult day center model, which is unique to PACE, has been particularly influential. The decline in his physical health led him down a path of deep depression. He started to withdraw from his family and friends, feeling hopeless and defeated. Daily access to a space that facilitates social interaction and relationship building provided the strength and support he needed to recover. When asked what life would be like without PACE, Woodberry said matter-of-factly, “I’d be dead. What you see today is a helluva different person.”
The significant improvement in Woodberry’s mental and physical health is not lost on his family. Before discovering PACE, Woodberry’s daughter was prepared to uproot her life from New York City to Boston. Enrolling her father in PACE afforded her the choice to stay in New York while remaining involved in his care. In fact, once Woodberry attained the independence he was yearning for, it became easier for him to accept his daughter’s help. With direct access to the site nutritionist, Woodberry’s daughter can send him home cooked meals that comply with his recommended diet.
Family members of enrollees are invited to visit the facilities, communicate directly with the clinical care team, and attend regularly scheduled team meetings. Highlighting the impact that PACE has on family members, Lopes says, “We reduce some of their stress… allow them to go back to work or feel like they can go back to work without worrying about leaving mom or dad home alone.”
So why don’t more PACE programs exist? And why aren’t more seniors enrolled in PACE?
Assessing PACE’s success has been challenging due to its nature and population. Susan Ciccariello, director of coordinated care for the state’s Executive Office of Health and Human Services, has spent several years overseeing the PACE program. She acknowledges that the data on its effects are limited. The program’s impact on quality of life, mortality rates, and costs remains unclear. What is unequivocal however, is the growing interest in PACE both by state officials and seniors.
Currently, 129 PACE programs exist across 31 states, 8 in Massachusetts. The state saw a 5 percent increase in PACE enrollees in 2018. Nationwide, enrollment has increased 120 percent since 2011, now covering 45,000 enrollees. More recently, the federal government is allowing, for the first time, for-profit companies to become PACE providers.
Across the state, there has been a general trend towards coordinated health care models with the emergence of Senior Care Organizations, One Care plans (i.e., Medicare-Medicaid plans), and Accountable Care Organizations. These programs vary in eligibility, benefits, and funding source but share a similar goal to PACE — to provide comprehensive, integrated care that improves quality of life years for a growing number of seniors.
Despite existing for much longer, enrollment in PACE has lagged behind its counterparts. According to Ciccariello, a major reason for this large difference is access and awareness. Qualifying seniors are often not aware of the program or do not live in close proximity to a PACE site.
Recognizing these barriers, the Baker administration has established goals for streamlining the program and eliminating “PACE deserts.” The administration’s plans for the 2019-2020 calendar year include a review of costs and programming at each site, standardization of eligibility, enhancing awareness and access for qualifying residents, and establishing a more reliable system to collect data and create transparency among different program sites.
While no one size fits all solutions, stories like Woodberry’s are a good reminder that PACE has the potential to thrive, and scaling up the program is worthwhile. For Manny Lopes, the East Boston health center director, PACE is a symbol of what US health care should look like. He sees the expansion of PACE and models like it as an encouraging sign of a health care system that values the “voice and choice” of the people it serves.
Monica Vohra is a community health physician and advocate in Boston.