Service Disrupted: Managed Long-Term Services and Supports Falling Short for Adults with Intellectual and Developmental Disabilities

The rapid advance of managed care in Medicaid is newly enfolding many adults with intellectual and developmental disabilities (IDD). These consumers need a well-coordinated and broad range of home and community based long-term services and supports.  To assess how these consumers are faring in managed long-term services and supports (MLTSS), we examined programs in eight states – Arizona, Arkansas, Iowa, Kansas, Michigan, North Carolina, Tennessee and Wisconsin. In these locales, the programs are all statewide but use a variety of models.

We found results ranging from somewhat beneficial to terrible. In no state have consumers resoundingly gained better access to the full range of high-quality, coordinated services they need.

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The problems of MLTSS programs for people with IDD have caused states to rethink managed care as the model for IDD service system reform. This opens up space for advocates to introduce other ideas on how to improve and strengthen the IDD service delivery system.

Our report recommends the following promising practices, and offers action steps for state officials and consumer advocates:

  • Resist any plan to move IDD LTSS services into managed care solely to save money, and proceed with extreme caution in other cases
  • Authentically engage consumers in program planning, implementation and oversight
  • Build a robust provider network, including experienced case managers and direct service workers
  • Exercise strong oversight
  • Establish strong quality measures
  • Require consumer-centered policies in all aspects of MLTSS program design

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To share comments or additional information, please contact Madison Tallant, Program and Policy Coordinator, at Mtallant@communitycatalyst.org