Justice in Aging (formerly the National Senior Citizens Law Center) released a new report that analyzes how well states are implementing a 2014 rule that creates the right to person-centered care planning for Medicaid consumers of Long-Term Services and Supports.

When consumers are given the opportunity to choose where, how, and by whom they receive their care; and make their own decisions about mealtime, bedtime, which activities they engage in, and generally direct their own lives to the greatest extent possible, they have better health outcomes, more independence, and lead more fulfilling lives. Too often, decisions they can and would like to make themselves are made by others. This is because, at times, person-centered care plans can be cursory and driven by the needs of the health plans, government agencies, or managed care plans, rather than by the needs and desires of the consumer.

Thankfully, the CMS rule has prompted a renewed focus on person-centered care planning among health care professionals and advocates. This report, created with support from the John A. Hartford Foundation, is a tool for health care providers, plan administrators, and advocates to help them understand the scope of the rules and be able to identify when they sometimes fall short.

"We are very pleased to be supporting Justice in Aging in this work, said Marcus Escobedo, Senior Program Officer at the John A. Hartford Foundation. "This topic is not academic. Understanding these rules is crucial if we are to deliver on the promise of true person-centered care that will allow consumers receiving long-term services and supports to achieve greater independence and lead a better quality of life."

Person-centered care planning rules issued by the Centers for Medicare and Medicaid Services (CMS) in 2014 do provide a strong legal framework to ensure that person-centered care planning is a right conferred on Medicaid recipients receiving Long Term Services and Supports through managed care under some Home and Community Based Services (HCBS) waivers. However, there are areas where more guidance is needed and where gaps exist that prevent true person-centered care planning from being a reality for most consumers.

The new report, A Right to Person-Centered Care Planning, provides legal analysis of the rule, and identifies gaps where additional federal guidance is needed, or where better state rules or tighter managed care plan contract terms would make person-centered care planning real. It also gives examples of best practices in certain states that can be adopted by other states, managed care plans, and government agencies to ensure that seniors and persons with disabilities can lead independent and fulfilling lives.

The Elements of True Person-Centered Care Planning:

  • The consumer must lead the process, including when and where planning meetings are held and who is present
  • The consumer is empowered to make informed choices based on meaningful and easily understood information, and be given actual choices
  • There must be a written service plan that reflects the consumer's needs and preferences
  • The written service plan must be finalized and agreed to by the consumer through informed consent.
  • The plan must be reviewable and subject to change as the consumer's needs change

This report is just a beginning exploration of the dynamic world of person-centered care planning and is an invitation to consumers, advocates, CMS, state agencies, health plans, and providers to work together to create better rules, better language, and better understanding of what is necessary to ensure a right to person centered care.

The full report can be viewed here. An accompanying webinar can be viewed here.