LeadingAge Magazine · September/October 2016 • Volume 06 • Number 05

Be the Advocate

September 15, 2016 | by Gene Mitchell

Advocacy is an important part of making a difference in public policy and the lives of seniors. See how providers, seniors and LeadingAge state partners are doing their part.

LeadingAge members and the people they serve go to great lengths to make a difference in people’s lives. An important part of that is engaging in advocacy, in a highly regulated field that relies on public funding to provide many needed services. Here is a look at how one member organization, one LeadingAge state partner, and a group of motivated life plan community residents have advocated for change.


Retirement Housing Foundation (RHF), based in California but operating in 29 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands, serves more than 20,000 people in 185 communities. It is known for its ability to mobilize residents and staff to advocate on behalf of senior housing at both the state and federal levels.

“As an organization, advocacy is one of our 9 goals in our strategic plan. Dr. [Laverne] Joseph [RHF president] is behind it and our board strongly supports it too,” says Chris Ragon, vice president of communications for RHF.

Calls to advocacy from LeadingAge or its state partners often require quick action from members, as new regulations or legislation is proposed. RHF encourages residents in its housing properties to get involved. Given the diversity of the organization’s residents, language is one of the foremost challenges to quick action.

“What usually happens is, I get a notification from LeadingAge California or LeadingAge national, and we have maybe a couple of days to do something,” says Ragon.

Letters are translated into the major non-English languages represented in RHF communities: Spanish, Korean, Mandarin, Cantonese or Armenian. A letter, for instance, will start with a message in one of those languages, with the English text below it, and it will be signed by a resident.

“I know we’re moving toward electronic communications, but for the world we’re in, faxing letters and making phone calls is still the means of operation for most of our communities,” Ragon says.

She adds that with proper planning, once such a campaign is done once, it becomes easier to repeat it for other issues.

“A lot of our residents are naturalized citizens, and they really enjoy being able to vote and advocate. It’s a cherished experience,” says Ragon. “If you inform them, and give them the means to do what you need them to do, it’s not hard to understand why these people will get involved. These are things that are near and dear to them, and there’s no one out there who are better advocates.”

LeadingAge California organizes advocacy days when residents go to Sacramento to talk to legislators. “We try very hard to give residents the opportunity to talk,” Ragon says. “We have some who don’t want to, and others who were born for this.”

As a housing provider, the issues surrounding senior housing are near to RHF’s heart.

“We’re still pushing, trying to get HUD 202s back on track,” Ragon says. “Some people will say that’s a dead issue, but it can’t be a dead issue. Tax credits are wonderful but do not address the lowest-income seniors out there so we need to have something in its place. In its heyday, it doesn’t matter who you talked to, they would say the HUD 202 program was one of the most successful programs they had. There’s a huge part of the population that’s being left out. There has got to be something out there to replace it.”

She referred to a couple of new 202s that RHF is building in Texas, noting that the organization has already heard from hundreds of people who have walked or driven by the construction site and seen the signage. (RHF can’t begin advertising the new communities until they are 60% completed.)

“There is just a huge need for housing, and it just doesn’t seem like it’s on anyone’s plate. I hope new efforts LeadingAge is working on, with the Seniors Action Network, can be really effective,” Ragon says.

The Seniors Action Network (SAN), organized to give America’s seniors a greater voice in public policy, was launched in spring 2016 at the PEAK Leadership Summit in Washington, DC. Created by LeadingAge and Volunteers of America, the network aims to recruit, educate and train grassroots advocates “to take leadership in the formation of public policy by direct outreach to decision makers.”

“We’re approaching the 1,000 mark in recruits, says Marsha Padilla-Goad, director, grassroots and member engagement for LeadingAge. “So far it’s a nice mix. Some communities have signed up their entire tenants’ associations.”

Padilla-Goad says early campaigns will focus on affordable housing. Participants in the SAN will be asked to email, call or mail letters to legislators on specific bills. Seniors or providers interested in joining can visit the SAN website or text "seniors" to 52886.

Do you have a story to tell about grassroots advocacy campaigns?

LeadingAge is looking for:

  • Examples of grassroots advocacy that included senior participation. Possibilities could include contacting lawmakers, hosting lawmakers or staff for a tour of your community and attending town hall meetings.
  • Advocacy campaigns that are/were successful in building relationships with lawmakers, convincing them to take specific legislative action, or convincing a lawmaker to take an interest in issues important to elders. If you tried an innovative approach—even if it didn’t work in a specific case, we’d like to hear about that too.

Please contact Marsha Padilla-Goad at (202) 508-9442 or mpadilla-goad@leadingage.org.

LeadingAge Pennsylvania members mobilized for an important victory in 2015, when threatened with a new Medicaid reimbursement formula that would have significantly reduced payments for not-for-profit providers in the state.

Pennsylvania’s Department of Human Services has, for years, used a “budget adjustment factor” (BAF) to determine Medicaid payments to skilled nursing providers. For instance, homes received 83% of the full Medicaid rate in 2015, a percentage that has been slowly declining for more than a decade.

In early 2015, providers learned of a proposed change to the BAF calculation that would substantially reduce Medicaid payments to not-for-profit providers while providing increased funding to large, out-of-state for-profit chains. To make the situation worse, the state intended to make the change quickly, making it imperative that opposition to the change be mobilized quickly.

“We found out about it and put the grassroots machine in place,” says Anne Henry, senior VP & chief government affairs officer for LeadingAge Pennsylvania. “If organizations [were to] see those rates enacted they might have had to make it up with higher fees, so seniors got involved.”

Members helped with letter writing and personal advocacy with legislators. Help also came from regional networks, one example being the Lancaster Area Senior Service Providers (LASS), a group of Lancaster County providers who meet regularly to talk about issues of concern. The group reached out to assembly members from its area.

“We had media get involved—a local TV station was willing to tape one of our members speaking about the millions of dollars they would lose, and what that would mean to the organization,” says Henry. “We used every point of leverage we could. One member has a relationship with our state’s lieutenant governor, so we were able to get an audience and take some seniors along as well as members.”

Henry says the campaign had one lucky bounce when the Pennsylvania attorney general sued a major for-profit over quality of care during the same time period. “It had nothing to do with [the BAF issue], but everything to do with it, at the same time,” she adds.

“The next thing you know, the phone rings and the secretary of the Department of Human Services said to us, ‘You won, stop your machine.’ It was quite the campaign, one of the largest this organization had seen in quite some time,” Henry says.

Henry says some members who knew they might benefit from the BAF change participated in the advocacy anyway, knowing the new system could be unstable and that it wasn’t the right way to proceed.

“We had a lot of members going to the general assembly, the Governor’s office, going to the state Medicaid agency,” says Henry. “We uncovered caucuses we didn’t even know existed. For instance, there’s a Masonic Caucus—covering both chambers, totally nonpartisan, and they signed onto a letter asking the state to stop this because the Masonic homes would have taken a significant hit. It was a full push and we met with great success.

Members are contacted using “member alerts” that LeadingAge Pennsylvania uses sparingly. “Members know when they get one it’s mission-critical,” says Henry. “We also work with the PA branch of NACCRA [the National Continuing Care Residents’ Association]. We sent the information to them as well and they would send us copies of handwritten letters they were sending to elected officials or the governor.”


As the examples above show, resident activism and advocacy are especially effective. In North Carolina, seniors took the lead in fighting a change in state laws that took a big tax bite.

“We discovered that the state legislature [in 2014] had eliminated itemized medical deductions from state income taxes,” says Becky Nesbitt, a resident at Plantation Village Retirement Community in Wilmington, NC. “We had a residents’ council meeting so … I told the group what I had heard and a number of people wanted to get together and work on that.”

The group started a campaign of letter-writing and phone calling, reaching out to residents of other retirement communities to get involved. Residents collected information on the impact of the change on state income taxes.

The North Carolina Continuing Care Residents Association (NCCCRA) got involved, according to Plantation Village resident Herb Wile, another participant in the campaign.

“Sindy Barker is the [NCCCRA] legislative appointee,” says Wile. “We drafted talking points and so did NCCCRA. We got involved with an incredible number of letters, emails and phone calls to various local and state reps and state senators. We set up a list of legislators by district and reached out to different continuing care community residents to work on their local legislators. With us as an example, some 35% of our monthly fees at Plantation Village go in as medical deductions. In the year prior to this legislation my income tax refund was $400. The next year I owed them $3,000! People took big hits.”

Barker also serves on the LeadingAge North Carolina board, and President and CEO Tom Akins says, “She really was the driving force behind this collaborative effort. We continue to work with her and NCCCRA on issues that we can support together—and that makes a huge difference with policymakers.”

The campaign was successful, as the law was changed in 2015 to reinstate the deductions.

“A bunch of little people got their voices heard, and legislators started talking about unintended consequences,” says Nesbitt.


RHF’s Chris Ragon talks about why advocacy is so important with respect to senior housing, but it’s easy to see how her arguments would apply to any other part of the continuum of care.

“When you listen to someone who’s living in a hotel, and out of their $700 [monthly] check, $500 is going to pay for that daily hotel they stay in, or when you hear from someone coming out of a battered women’s shelter, this is real life, it’s not statistics, and there but for the grace of God go you or I,” says Ragon. “With very limited investment on the part of the government, you can solve so many problems, whether it’s homelessness or health issues or services, it’s so much cheaper to do it the way we do it.”