Recently, I had the great pleasure of welcoming participants – advocates, providers, health plans and funders — at the second annual Voices for Better Health grantee convening. When we first met a year ago, the Centers for Medicare and Medicaid Services (CMS) was just at the beginning of launching a set of demonstration projects for individuals with both Medicare and Medicaid (dual eligibles). At the time, Washington state was four months into a health homes demonstration and Massachusetts was a mere three weeks into its managed care (fully capitated) project. So much has happened in the past year: seven states have now launched their projects, more than 200,000 beneficiaries are now enrolled and several more projects are set to begin in the next few months.

While the goal of these projects is to provide high-quality, cost-effective, integrated care to dual eligibles, some of the most vulnerable people in this country, it will be a long time until we know whether that has been achieved. Until then, we see both the promise and the pitfalls illustrated in two stories I shared with convening participants:

First, the promise:

Maria, a middle aged woman with complex medical and psychiatric needs, had approximately 30 Emergency Room visits in the two months prior to enrolling in the demonstration. She has a chronic substance use disorder and has few social supports. She had no effective primary care and her complaints were not validated or listened to. After an initial assessment by her new plan, her care team came together, collected all of her medical records and worked with her to identify a primary care provider and specialists. She received daily support from her care team. Her care manager and behavioral health specialist were available to answer her phone calls, visit her in her home, and accompany her to appointments. Maria has engaged in psychotherapy and psychopharmacology treatment. She is going to the Methadone Clinic daily. Her care team is working to help her with other supports including a change in her living circumstances. She has not had any Emergency Room visits or hospitalizations since she joined

Now the pitfalls: 

Angela has been living with a spinal cord injury for many years and is confined to a wheelchair. For 20 years, she had the same care manager who worked with her to develop a care plan that allowed for a team of personal care attendants to assist her with her activities of daily living. Earlier this year, she received a letter saying she would be enrolled in a new demonstration project and that she needed to select her health care plan. Her deadline for choosing her plan came before any information was available about the plans’ networks. Since that time, the care plan that she had so carefully crafted disappeared. And, months later, she still does not have a new care plan. She has had trouble finding a primary care doctor that is participating in the demonstration or accepting new patients. But, most importantly, the individual caregivers that came into her home to help her can no longer come because they’re not able to get paid through the demonstration.    

These two stories show that the demonstrations are still works in progress. We are very grateful for the leadership and hard work coming out of CMS and, in particular, the duals office. They have been responsive to the concerns of consumers in the design and early implementation. We know that transforming the health delivery system to make it work for dual eligible beneficiaries is a challenging endeavor. Meeting those challenges will not be easy. But to tackle those challenges, consumers, their advocates and allies – like those taking part in the Voices for Better Health convening – must stay engaged throughout each stage of the process: the design, implementation and monitoring.

It is only through this type of engagement that we can realize the vision of a more just, equitable health care system that provides high quality care to the most vulnerable people and allows them to live their lives with dignity and independence.