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HCBS Participant Council member Ari Houser is senior methods adviser for the American Association of Retired Persons (AARP), where he has been employed for 18 years. In his work at the AARP Public Policy Institute, he converts data that covers a variety of issues into information that advocates at AARP and state agencies around the country can use to illustrate the need for changes in their long-term services and supports (LTSS) systems. After completing his undergraduate degree in engineering and physics at Swarthmore College, Houser envisioned that he would be solving elegant equations in isolation. However, his focus has evolved throughout his career.
If I had to describe the philosophical underpinning of my work, it’s that in order to make improvements, you need to be able to understand what is happening and assess whether any changes that you’re making to improve the system are actually having results. In that sense, data collection and measurement are critically important to improving LTSS and quality of life.
Ari Houser
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Houser learned about LTSS on the job and now also researches livable communities and housing and transportation. He says that while it’s not always possible for state agencies to track everything that is happening in disability policy in their states, he spends most of his day attempting to explain the real-world implications of data on LTSS to legislators and agency officials.
When the COVID-19 pandemic hit, Houser said a topic that made the public uncomfortable was thrust into the global conversation about public health. In spring 2020, COVID-19 was having more impact than any other issue on the LTSS population. He and his teams had been working on an LTSS scorecard, a project that takes a broad look at states’ performance in service delivery. But they had cut off data collection at the end of 2019. Though they released the scorecard anyway, they decided to launch a COVID-19 dashboard that compiled data up to the state level on a monthly basis. AARP’s COVID-19 dashboards analyze factors like personal protective equipment shortages, staffing shortages, deaths and cases among residents of congregate-care facilities, and cases among staff.
Prior to the launch of the dashboard, Houser said the data coming from individual states couldn’t be compared, because each state was analyzing different aspects of the pandemic’s effects. “Nobody was saying in an organized manner, ‘What’s happening now?’,” Houser says. “Other places that were tracking were saying, ‘This is the total impact that we’ve seen,’ which is different than, ‘What’s happening now?’” However, one complicating factor of information production is that LTSS data is still hard to compare, because each state runs individual systems with individual definitions of services and supports. Also, he says, many people who receive LTSS services are also relying on an informal network of family, friends, and neighbors. “They’re purchasing services with their own money outside any formal LTSS systems,” Houser says. “There’s a huge universe of people who are receiving services at home, or who need services at home and aren’t getting them.” The challenge of this work is to collect data about these people in a respectful way. In the future, Houser would like to look holistically at families who receive HCBS services.
We know a little bit about who gets services, what services they get, who provides the services, and what they do, but how do different family structures affect who provides services? How does that affect outcomes, in terms of quality of life for the person getting services? There’s a lot of complexity there. I think there’s a lot of opportunity for public policy to increase equity and to increase utilitarian good if we understand that well.
Ari Houser
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Since the COVID-19 pandemic began, Houser says there has been more of an appetite for data. He used to be able to confidently cite data that was two or three years old to stakeholders to give them a satisfying picture of LTSS services. Now, those same people grow impatient if a dashboard is three weeks old, he says. This shows Houser what’s possible for the future of health data. The trends that he sees are toward more data becoming more available, with an eye toward quality measurement projects for home and community-based services in particular. Quality measurement is critically important as more people use HCBS services, he says. “It’s the reality now for a small fraction of the population, and it’s going to be the reality eventually for a large part of the population.”