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Improving Long-Term-Care Supports Means Advocating Inside and Out
posted 04.12.2012

A first-person peek at state-level advocacy, from someone wedged between lobbyists and legislators.

By Herb Sanderson

Pushing a boulder uphill: that’s what it often feels like when advocating for improvements to long-term-care services and supports in the community at the state level. With seven years as an area agency on aging (AAA) director, twenty-four as the director of the Arkansas Division of Aging and Adult Services, and the last three as the AARP Arkansas Associate State Director for Advocacy, I have found advocating for change challenging, but rewarding.

It’s challenging because of the influence of industry lobbyists and competition for limited resources. It’s even more challenging because the bureaucratic maze of state government can grind up anything and anybody. But it’s also rewarding to see many innovative programs thrive—like Cash and Counseling, the program we began in Arkansas as part of a federal demonstration.

Are You In(side) or Out(side)?

The advantage of advocating from “inside” government is that you’re in the mix of policy and budget decisions. As an agency director I never got everything I asked for, especially on the first ask. However, I was at the table with the governor and state officials who made decisions on budgets and policy.

Advocates can advocate all they want from the outside, but if the state doesn’t submit a Real Choice Systems Change (RCSC) Grant, Money Follows the Person, Balancing Incentive Payment, or Medicaid Waiver application to the federal government, programs will never happen. In Arkansas, several RCSC and foundation grants provided millions of dollars to invest in the planning and development of HCBS services—money that led to affordable assisted living, adult family homes, a sustainable Aging and Disability Resource Center, a robust Options Counseling law (with staff to run it), and the first Medicaid Cash and Counseling project serving consumers. On the other hand, when hiring freezes, budget shortfalls, and politics make life frustrating, outside advocacy can be vital.

For example, in one year, more money was wanted for transportation and home-delivered meals for senior centers. Even though a budget request was made internally, and discussions occurred within the umbrella department, the request for additional funding never made it into the budget book that appeared on legislators’ desks.

This didn’t stop the aging services network from lobbying legislators. Led by the AAAs, with active involvement from senior centers using their built-in constituency, there wasn’t one legislator unaware of the issue. When it came time to appear before the legislative budget committee, I was grilled by legislators on why I didn’t ask for more money for senior centers and home-delivered meals—didn’t I think senior citizens were deserving? There was a need for more funding, but once the request was denied internally by the department administration, my job was to take the company line.

Budget hearings are the only time I have tap danced in public. In reality, most of the legislators were more than happy to make the administration the bad guy instead of finding money to fund the increase.

A couple of years later, the outside advocates, AAAs, and senior centers again sought money, this time meeting with Governor Bill Clinton to make their case. He suggested they approach the tobacco companies and tell them if they didn’t agree to a tax increase of one cent per pack, the senior coalition would go to the voters and ask for five cents. The tobacco companies didn’t bite. Despite requiring a super majority of 75 percent in both houses of the Arkansas legislature, the AAAs, senior centers, AARP, and older Arkansans went for the one-cent increase.

I could not publicly get out front on the issue, as the tax increase was not part of the executive branch budget package. However, I played an active role behind the scenes and joined the fight. What great fun! The aging network took over the capitol and bested some of the most powerful lobbyists ever to walk Arkansas’ legislative halls. At the session’s conclusion, the statewide newspaper declared “Older People” as Lobbyist of the Year.

The (Oft) Perilous Path to a New Order

As head of the Arkansas Division of Aging and Adult Services, I had the opportunity to serve under four governors, Democratic and Republican. Early on, I realized good politics for older people is good politics for elected officials. It is well documented that elders overwhelmingly prefer to receive care in their home. And they have excellent voting records.

I was fortunate that all four governors supported home- and community-based care. As an insider, I had the resources to bring experts like Dick Ladd to Arkansas. As head of the Division, I was able to apply for RCSC Grants, Money Follows the Person, Medicaid Waivers, and foundation grants (such as Coming Home, from Robert Wood Johnson Foundation) to create affordable assisted living. Without advocates’ support, none of these programs would have been as successful. Consumer advocates put a human face on the issue, have the ability to pressure government employees’ superiors in a way the employees cannot, and can articulate why programs like consumerdirected care are needed.

In contrast, it wasn’t pleasant to go to a legislative hearing, look around the room, and realize you were on your own. Especially when opposition lobbyists had wined and dined committee members the night before. Without outside advocates, life as a bureaucrat can be lonely.

Machiavelli wrote in The Prince, “There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success, than to take the lead in the introduction of a new order of things. For the reformer has enemies in all those who profit by the old order, and only lukewarm defenders in all those who would profit by the new order, this lukewarmness arising partly from fear of their adversaries…and partly from the incredulity of mankind, who do not truly believe in anything new until they have had actual
experience of it” (as quoted in Scott Berkun’s The Myths of Innovation).

While it is easy to get providers of services to rally for increases in funding, other issues prove more challenging. Today, the Arkansas HCBS Medicaid waiver funds more home-delivered meals than does the Older Americans Act. But when we were developing the waiver application, some home-delivered meal providers were ambivalent about the waiver because it would require they become Medicaid providers and bill for meals provided instead of receiving a direct grant to run the program. One AAA director opposed submitting the waiver—fearful it would compete with funding they were already receiving. When Arkansas proposed legislation to define and regulate assisted living, the nursing home industry initially defeated it.

Machiavelli’s words ring true today, which is why citizen advocates are critical. They are seen in a different light than paid lobbyists or providers. And there are more of them, so when mobilized effectively, they become a force to be reckoned with. Watching older consumers beat the tobacco lobbyists convinced me that citizens can trump special interests. The little guy can win. But it takes organization, leadership, and resources. This is what brought me to AARP, and I have not been disappointed.

Immediately after I began at AARP Arkansas we were invited to join a coalition to raise the tax on tobacco products during the 2009 legislative session. AARP joined because some of the revenues would support long-term-care services and supports. Advocates formed the coalition, independent from the executive branch. Like the one-cent increase, a 75 percent super majority of both the Arkansas House and Senate was required for passage. This time a 56-cent per pack increase was sought, with additional taxes on other tobacco products. The bill passed without a vote to spare. The Speaker of the House credited AARP Arkansas with ten of the yes votes in the House.

To advance long-term-care services and supports in the community, advocacy is required inside and outside of state government. Rarely will policy advance without both.

Herb Sanderson, M.P.A., is AARP Arkansas Associate State Director for Advocacy in Little Rock, Arkansas.

Editor’s Note: This article is taken from the Spring 2012 issue of ASA’s quarterly journal, Generations, an issue devoted to the topic “30 Years of HCBS: Moving Care Closer to Home.” ASA members receive Generations as a membership benefit; non-members may purchase subscriptions or single copies of issues at our online storeFull digital access to current and back issues of Generations is also available to ASA members and Generations subscribers at Ingenta Connect. For details, click here.

Order Generations   |   Subscribe to Generations

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