How many times in our lives have we been on the giving or receiving end of this inscrutable little question? Given our Web-enabled lives, the answer often comes easily. There is nothing quite like accessing a quick set of directions on my cellphone, or the certainty that a confident GPS voice will tell me exactly how many more miles I must travel to reach a desired destination. So many fundamental activities crucial to our daily lives can be measured with certainty and confidence, but not so in health care—and certainly not when it comes to aging and long-term services and supports.
Over the last three decades, much progress has been made to measure quality of care delivered in medicine, particularly in an acute setting. While still too opaque and not always useful to consumers (people and families) or purchasers of care, we still know a lot more about what “good performance” looks like in a hospital or a doctor’s office. Many aspects of health care access, delivery, and cost have improved as a result of concerted measurement efforts. That’s the point . . . to really show improvement, we must know a starting point and then measure change over time.
As we grow older, most of us will experience a period of life with serious health conditions or significant functional challenges. Upon reaching this point, quality still matters both in terms of the technical aspects of care delivered but also, and frankly probably more importantly, the quality of life a person has each day. It begs an answer to this question: do we know that we will get thoughtful, person-centered care that respects our choices, values, and dignity?
Until now, there has not been a way to answer this question, and unfortunately the preponderance of the odd bits of data that exist do not point to a hopeful answer. How well are federal, state, and local policymakers doing in creating a high-performing long-term care system? What can be improved? Where to begin? The State Long-Term Services and Supports Scorecard represents the first attempt on a national basis to benchmark performance in every state to start the journey of answering all these questions.
The State LTSS Scorecard, developed by AARP Public Policy Institute and funded by The SCAN Foundation and The Commonwealth Fund, was initiated through a comprehensive process to define critical dimensions of care. The original five dimensions were: 1) Affordability and Access; 2) Choice of Setting and Provider; 3) Quality of Life and Quality of Care; 4) Support for Family Caregivers; and 5) Care Coordination. Using this framework, expert panels systematically reviewed publicly available data that could measure these dimensions. After an exhaustive process reviewing hundreds of potential measures, it was determined that 25 indicators had enough data across the states to measure four of the five dimensions. The Care Coordination dimension did not survive in the final Scorecard, given that there were simply not enough data to give an accurate score to any state.
What did the State LTSS Scorecard reveal about aging with dignity and choice across the states? In short, we have a very long way to go. Clearly, some states represent best practices for others to emulate, such as Minnesota, Washington, Oregon, Hawaii and Wisconsin, but even the top quartile states still have opportunities to improve. While states with higher rates of poverty and lower per capita incomes generally scored lower, some of these states still performed highly on specific measures. State Medicaid policies play an important role in shaping the level of coordination, the community-based orientation to care, and the structure of the overall delivery system for all with significant functional limitations and serious chronic illness, not simply those receiving care only through publicly funded programs.
Why should we measure these dimensions and what improvements might come from the State LTSS Scorecard findings? The current system of long-term care is fragmented and generally does not effectively link health care and supportive services. The delivery of services is frequently inefficient and often ineffective. If all states were as effective as Maine, more than 667,000 eligible individuals would receive long-term services and supports through public programs. If all states could match the performance of Minnesota, we could prevent more than 120,000 unnecessary hospitalizations while saving roughly $1.3 billion in health care costs. Oh yes, not to mention that people would get better care – perhaps the most important outcome of all.
This first State LTSS Scorecard is a clarion call to action for stakeholders of all varieties. The federal government needs to do a substantially better job in developing a single set of metrics to collect and share across all the departments of jurisdiction as well as with states and the stakeholder community, including consumers. Executive and legislative staffs in the states should use this tool to help guide decisionmaking about what the most important next steps are in their program and policy development. Clearly, a scorecard of this type provides the clarity of a magnifying glass and not a microscope. The difference between states in positions 3 and 4 or 37 and 38 is immaterial, while the difference between states in the first and the last quartile is significant. Even in these difficult fiscal times, states could consider revisiting their access and service choice policies to improve efficiency and community orientation, focus on single point of entry opportunities to decrease administrative redundancy, and improve support of family caregivers. Finally all of us in our roles as parents, adult children, caregivers, and consumers need to demand a better, more person-centered, and more measurable system of care so that when the time comes for needing support, we will know that we are indeed there.
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