Quality measures in managed long-term services and supports (MLTSS) and for individuals with intellectual and developmental disabilities (I/DD) are some of the most difficult to define. In September 2019 at the RCPA conference in Hershey, PA, we were fortunate to participate in a presentation titled “Managed Care Quality Measures for I/DD Services” with Donna Martin, Joan Martin, and Alissa Halperin.  During that talk, they discussed what quality measures are currently being used, what some of the different perspectives on quality measures are, and what certain states are using as their definitions for the I/DD community. This blog is built on their findings and we are grateful for their insights.

Let’s start with the current barriers to defining quality with the I/DD population. (By the way, if you missed the last blog we would recommend starting there, it defines the current landscape with I/DD and VBP.)  Based on ANCOR’s white paper from 2018 it is apparent the largest issue we have is limited experience with the I/DD community. Managed Care Organizations (MCO’s) have minimal experience with persons with the unique needs and life-long care that the I/DD community requires. Because of that, there is inadequate experience from both the MCO’s and the states on what rates should be set, and in turn, how to define quality. There is also a lack of valid and reliable metrics to measure LTSS outcomes. Addressing and removing these barriers will require that providers become better prepared with training, infrastructure, and practices to step into these requirements when they are introduced into their states.

From 2004-2012, the number of states offering programs for MLTSS has doubled and the number of persons receiving LTSS through managed care has increased from 105,000 to 389,000. These numbers have sky-rocketed since, however, their premise and trends continue. CMS noted this shift and offered key principles to help new programs learn from what other states had already learned. One of those principles is quality. The CMS guidance included, “The building blocks of a quality MLTSS program include both existing LTSS quality systems and managed care quality systems. Merging these two systems may provide a state with more sophisticated data capabilities and provide a new opportunity to think holistically about beneficiary outcomes.”  This principle loosely defines how important considering integration of care will be; this includes acute, primary, behavioral health, and LTSS needs in order to provide a framework for states.

Another study done by the National Quality Forum in 2016 titled “Quality in Home and Community-Based Services to Support Community Living” on Home and Community-Based Services (HCBS) dove into a shared understanding and approach to assessing the quality and the gaps in care. Here are their recommendations on how quality could be defined on a global level:

• Service Delivery & Effectiveness
• PCP and Coordination
• Choice & Control
• Community Inclusion
• Care giver support
• Workforce
• Human & Legal Rights
• Equity
• Holistic Health & Functioning
• System Performance & Accountability
• Consumer Leadership in System Development

This highly informative study broke down each of these topics including recommendations on short term, intermediate, and long-term solutions for each, with examples of how they can be implemented. The barriers that are defined in this paper are similar to what has been found in other studies: lack of experience, administrative burden, and lack or limited access to timely data to make informed decisions.

In the presentation at the RCPA Conference, there were two other studies offered up. One looks at CQL, the Council on Quality and Leadership, and 5 factors on Personal Outcome Measures. This perspective looks at a much more personal approach to what quality means for a consumer involving things like their security and their goals. The final perspective is NCI, National Core Indicators, and what they define as quality indicators. Theirs look at individual outcomes, staff outcomes, system outcomes, among others.

 Advocate’s Perspective: You may conclude that the quality measures are still not organized sufficiently for you to act. We differ with this conclusion!   Most of the quality measures laid out are valid and are multi-tiered but by no means completely exhaustive. The essential building blocks are in place and the managed care environment allows states and payers to structure their own performance standard leading to Value Based Payments. You can do something about it: 1) Become more informed about the measures available to you as a provider. 2) Help inform your stakeholders, consumers, advocates and families. 3) Get your organization ready or more prepared to respond to payers. 4) Advocate to shape the requirements in your area, making sure that it’s about quality of life for consumers, not only about money.

In the next blog, we will examine a couple of areas of measurement in even greater detail.  We will later return to break down different state models that are currently in place and look at how setting design goals can set the tone for the success of any project.

Onward!

Fady Sahhar & Mandy Sahhar