LeadingAge Magazine · March/April 2013 • Volume 03 • Number 02

Breaking New Ground: Advocacy for Innovation

March 10, 2013 | by Linda Barbarotta

One important type of advocacy is directed toward encouraging or allowing innovative programs, practices and policies. A few LeadingAge members tell their stories of advocacy for innovation, and offer tips for doing it right.

Advocacy is always a top priority for LeadingAge and aging-services providers. Quite a bit of it is devoted to bread-and-butter purposes such as increasing, or preventing cuts to, funding for important programs that support vulnerable seniors and services for them.

Another important type of advocacy, however, is aimed at innovation. Providers encourage lawmakers and regulators to fund or allow innovative new programs; to allow and encourage use of new technologies; or to update existing programs to accommodate new service ideas or technologies.

Here is a look at how four LeadingAge members, along with LeadingAge’s Center for Aging Services Technologies (CAST), advocated for innovation and succeeded.

“These stories give us a sampling of our members’ persistence and commitment to improving resident care and are excellent examples of the power of our members' voices in affecting policy and practice change,” says Cheryl Phillips, LeadingAge’s senior vice president for advocacy and public policy.

Barry Berman, CEO of Chelsea Jewish Foundation in Chelsea, MA, was never a believer in stars aligning. That changed after the Foundation decided to build the nation’s first urban Green House® and the first for those with amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and multiple sclerosis (MS).

Berman and his management team were investigating other nursing home care models when they decided to adopt the Green House model. They would build a new Green House structure and incorporate many of its concepts into their existing nursing home.

Most Green Houses are detached, single-family homes located in suburban or rural settings, not in urban settings like Chelsea. Determined to not just build a new nursing home with neighborhoods, they decided to create The Leonard Florence Center for Living, a condominium-style complex that would house 10 separate Green Houses, two on each floor. Each house would be home to 10 residents, have separate entrances, kitchens and community areas. In fact, the front entrances of each house would have yellow siding, a front door, a doorbell and a mailbox.

The management team decided to welcome those with ALS and MS, traditionally underserved in nursing homes, into the new Green House. It was a generous idea but, as Berman was the first to admit, no one knew much about what it would take to care for them. They did know residents with ALS would need access to ventilation services, something most nursing homes don’t provide.

Undeterred, Berman and his team attended an annual ALS symposium where they met Steven Saling. Saling, an architect who has ALS, had come to learn about available housing options. A friendship began and when Saling learned the Foundation planned to build housing for those with ALS, he offered to help. Saling’s design of the house’s technology revolutionized ALS care. Renamed the Steve Saling ALS Residence, it opened in 2010 and is home to Saling and nine other residents. The latest computer-operated technology allows them as much freedom and independence as possible. Residents can operate anything with an on/off switch, open doors, adjust their bedroom shades and room temperatures or call for the elevator—all with the help of a computer and a sensor that tracks head and eye movements for instruction.

Getting these changes and additions approved by state and federal regulators was no small feat. Chelsea Jewish needed 26 waivers to get the project off the ground. Berman believes that the way he approached the regulators played a part in the successful outcome.

“The first thing I did was to visit the regulators and share my vision,” Berman says. “I went into these meetings with the attitude that I want to work together and assured them we will be partners. And perhaps most important, I went in with a humble attitude.”

In 2005, The Hebrew Home at Riverdale, Riverdale, NY, opened The Weinberg Center for Elder Abuse Prevention, the nation’s first emergency shelter for victims of elder abuse. The Center has helped raise awareness of elder abuse in its community and delivered training to more than 30,000 people who have frequent contact with the elderly.

As Hebrew Home President & CEO Daniel Reingold and his team began serving this population, it became clear that many needed safe and permanent housing. As Reingold points out, too many times they had been living with their abusers.

When the Hebrew Home received a HUD grant to remodel a building into Section 202 and Section 8 apartments, Reingold decided to take a bold step. He would propose to HUD that the new community, Hudson House Senior Housing, give preference to victims of elder abuse.

In 2011, Reingold presented his idea to his primary contact, Peggy Sheehan at the HUD regional office, and from that point on, they worked closely on pushing the request forward. It took a year but HUD ultimately agreed to the preference. Out of 60 apartments, preference would be given to victims of elder abuse in six. Reingold gives full credit to Sheehan: “I know if it wasn’t for Sheehan’s support, this request wouldn’t have been approved.”

Karen Scalera, executive director of Oak Woods Senior Residence, is a perfect example of how being committed to an idea and grabbing an opportunity can open doors.

Overseeing 73 Section 202 housing apartments in Monmouth Junction, NJ, Scalera had always been a supporter of connecting affordable senior housing properties with long-term services and supports. An opportunity came in spring 2012, when a colleague told Scalera that Buckingham Place Adult Day Care needed to relocate. Without missing a beat, she said “We have space.”

From that point, Scalera and her board explored whether this could work. They met with Buckingham’s owners and consulted with their own auditors, insurance professionals and attorneys. All parties gave the idea a green light.

But Scalera knew she needed to talk with her long-time contact in the Newark HUD regional office as soon as possible. He was supportive of the idea and encouraged her to submit the proposal and a copy of the lease.

The proposal was sent to the regional office in September, but by early October, the request was denied. HUD had a strong position against structural changes to Section 202 properties, especially if residents would lose any common space.

Scalera and her board were surprised at the denial, having heard for years how HUD was becoming more open to integrating housing and service delivery. But Scalera didn’t stop there. “I was not going to let this go. It’s such an important part of aging in place.” She called Nancy Libson, LeadingAge’s associate director for housing strategy, for help. Libson encouraged her to pursue this and gave her contacts at HUD in Washington, DC to request a review.

In the meantime, Scalera invited her HUD regional contact to visit the space, thinking a face-to-face discussion would be helpful. That personal visit made all the difference. He saw immediately that residents would still have sufficient community space on the first floor and maintain sufficient parking after the day care center opened. He encouraged Scalera to write an appeal, addressing the concerns, and send it to him for reconsideration. Scalera remains optimistic the lease will be approved.

Scalera and her board are looking forward to the services Buckingham will bring to Oak Woods. Residents will be able to take an elevator to needed day care services. As a medical adult day care, Buckingham will also offer health services, including medication management, physical therapy and prevention, and a home health agency.

Nancy Eldridge, executive director of Cathedral Square Corporation (CSC), South Burlington, VT, has long believed there was a natural fit between senior housing properties and long-term care services and supports.

In 2008, Eldridge decided to push for a system-wide approach. With funding from the state legislature, the Vermont Health and MacArthur Foundations and a stakeholder steering committee, the process of designing SASH (Support and Services at Home) began. A care coordination program, SASH tested successfully at a CSC property, Heineberg Senior Housing, where residents became intricately involved in its development.

The next goal was finding sustainable funding to expand SASH. Opportunity came in 2010, when Vermont was selected for a Centers for Medicare and Medicaid Services (CMS) demonstration project. The project encourages the expansion of advanced primary care practices teams to help coordinate care.

CSC convinced state officials to include SASH in Vermont’s proposal, showing how SASH could save the state more than $1.2 million dollars over the three-year project and improve care coordination. Initially, CMS thought the concept was good but viewed it as a long-term care model rather than a health care model. Eventually, state officials convinced CMS that SASH was much broader and would be an asset to the demonstration.

From the single pilot in 2008, SASH is now operating in 76 affordable housing communities statewide, in all but three counties, and for the first time has brought housing to the table with community service providers.

LeadingAge’s Center for Aging Services (CAST) achieved a key milestone when aging services was included in the health information technology provisions (HITECH Act) of the 2009 American Recovery and Revitalization Act (ARRA).

CAST and the LeadingAge advocacy team had worked tirelessly with House and Senate congressional committees for many years to ensure aging services would be included in legislation encouraging implementation of technology. Kathy Bakkenist, a CAST Commissioner from Ecumen, a LeadingAge member in Minnesota, joined LeadingAge staff in championing the cause, working closely with her Congressional representatives. An Ecumen resident shared how technology made a difference in her life at one of the CAST-organized Senate technology demonstrations that educated Congressional staffers about how technology helps older adults and those with disabilities.

“Without a concerted, years-long advocacy effort by members and association staff, this issue would not have risen to the top of the Congressional agenda,” says Marsha Greenfield, LeadingAge vice-president for legislative affairs.

A CAST-proposed study was included in the HITECH ACT, to examine how technology could assist seniors, individuals with disabilities and their caregivers. Majd Alwan, senior vice president of technology and executive director of CAST, was co-director of the study, which has been completed and submitted to the U.S. Department of Health and Human Services (HHS). HHS presented the study report to Congress in June 2012.

The study showed that evidence of efficacy and cost-effectiveness of the technology varied depending on the care issue, the technology and the operational and business model used. Technology solutions for eight common care issues were described.

“We now know which technologies have the strongest evidence and hold the most promise,” says Alwan. “We can advocate with the Center for Medicare and Medicaid Innovations (CMMI) to launch larger scale demonstration projects incorporating these technologies in innovative care delivery and payment models. These projects need to be led by, or significantly emphasize partnerships with aging services providers,” he adds.

For information and help with advocacy, visit the LeadingAge website and click on the “Advocacy” tab for background information, resources and help with your advocacy needs.

The LeadingAge members we interviewed offered a great list of tips on effective advocacy for innovation:

Do the right thing
Strength comes from being committed to an idea. There’s power in following your dream when the goal is to do the right thing for humanity (Berman).

Know your stuff
Understand what you are advocating for and why. Be prepared to bring data and stories to illustrate the problem and solution (Eldridge).

Build and nurture relationships with regulators
Make the effort to build and nurture relationships with federal and state regulators. It’s the basis for collaboration and will serve you in good stead when exploring new ideas. Let them know you want to work together and be partners. And most important, go in with a humble attitude (Berman, Reingold, Scalera).

Look outside the box
Be useful and creative about funding opportunities and alliances. Look for them everywhere, not just with the usual suspects (Eldridge).

Enlist the power of many
Work with others in the same field. Move from competitors to partners improving resident care. Ally yourself with well-established groups in your state with the same agenda. Thank them for their help and let them know you can’t reach your goal without them. Continuously update all on your progress. Keeping it visible and current will help momentum. But … anticipate and plan for resistance to your ideas (Eldridge, Reingold).

Use LeadingAge
Use LeadingAge resources, guidance and ideas. Scalera credits Libson with connecting her to the right HUD officials. Reingold learned the power of stories and carries around five of them all the time. Stories move people in ways that statistics can’t and keep your goals front and center (Reingold, Scalera).

Have a little chutzpah
Add chutzpah to your advocacy philosophy. It’s pursuing an idea, taking chances, plowing ahead with courage. It can help you walk through doors, both literally and figuratively (Reingold).

Help others be menschen

A mensch is someone who does the right thing. Enlist others in doing the right thing; ask them to be part of the solution. People want to feel that at the end of the day, they’ve made a difference (Reingold).

Understand technology
Be part of the development of any health information technology or data collection system. You need to be speaking the same language (Eldridge).

Involve consumers
Involving consumers at every step will add power and buy-in to your idea. Involving housing residents in SASH has proven invaluable. SASH coordinators often form kitchen cabinets of respected residents to help guide the program (Eldridge).

Don’t take no for an answer
Don’t be afraid to appeal decisions, especially if you feel your issue is worth fighting for (Scalera).