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Improving Care for People with I/DD with Quality of Life Metrics

By Paul Landers (President & CEO, Pathfinder Village; Board Member of Together for Choice)


Representatives of Together for Choice at CMS's headquarters in November, 2019


To date, there has been little consensus from the federal government and state Medicaid agencies how to most appropriately measure quality of care delivered to complex populations, including people with intellectual and developmental disabilities (I/DD). This population relies on unique social and health care services to meet their highly individualized needs. This complicates the development of standard quality measures since traditional approaches do not measure for non-traditional supports.


As states begin to consider transitioning services for people with I/DD to Medicaid managed care, it is imperative that the federal government, states, stakeholders, beneficiaries, and insurers collaborate to determine the most appropriate measures for this complex and diverse population.


Together for Choice, under the leadership of National Coordinator Ashley Kim, is working to engage the Centers for Medicare and Medicaid Services (CMS) and other accreditation and research organizations to develop a quality of life metric that provides rigorous methods to ensure the widest possible benefit.


Over the fall, TFC had several in-person meetings with CMS in Baltimore as well as numerous telephonic meetings to voice concerns about current quality measurement tools and survey methods:


  1. CMS is partners with multiple academic and professional research organizations to develop quality of life survey tools consistent with HCBS requirements. These tools differ significantly in design and method.

  2. These tools are merely a guide for states to develop their own tools to assess quality of life. We worry about the variation and reliability across the service landscape, particularly with consideration to how stringently some states have defined concepts like community inclusion.

  3. The methods are primarily interview-based with little to no proxy involvement. This is concerning to us as many individuals with I/DD are not able to respond reliably, especially on abstract concepts like life satisfaction.

  4. To date, no congregate settings have been part of any survey study. TFC asked that we be consulted in the future so that all HCBS settings are included during this critical period of research design.


TFC will continue to monitor and advocate for evaluative tools that reflect the diverse needs within the I/DD community and are deployed in the most person-centered manner possible. We appreciate the willingness of CMS to meet and discuss these issues with TFC leadership. Their responsiveness has been commendable.

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2019 by Together For Choice Inc.

Together For Choice

6050 S. Buffalo Drive

Las Vegas, NV 89113-2154