In June, I had the great honor of presenting on a panel at the Practice Change Leaders for Aging and Health (PCL) meeting in Chicago. For the uninitiated, the PCL is a gem of a program through which ten leaders work to develop their leadership skills by undertaking a one-year project aimed at improving care for older adults. The PCL chose a panel topic near and dear to our hearts here at Community Catalyst: Engaging Older Consumers in Health Care Design and Delivery.
The panel began with a poignant and heartbreakingly honest presentation by a wonderful woman named Darlene. For the last several years, Darlene has been a caregiver for her husband, who has advanced dementia. As she described her journey, she talked about meeting with providers who gave her medical diagnoses, but when asked about help in caring for her husband on a day-to-day basis, essentially said “good luck with that!” After years of struggling to keep up with the daily challenges of caregiving and her husband’s deteriorating condition, it was only by pure chance that Darlene discovered AgeOptions, an Area Agency on Aging that provided her with a broad range of supportive services, including respite care.
Throughout Darlene’s talk, I was struck by the failure of the health system to help her readily connect to the long-term services and supports (LTSS) she and her husband needed. This failure is both harmful to patients and their families, and is a major contributor to skyrocketing health care costs. It was also one of the driving forces behind provisions included in the Affordable Care Act that aim to provide better care at lower costs for our highest-need, highest-cost patients. One of the solutions to this problem can be found in better LTSS coordination, which is meant to be a feature of the dual eligible demonstration projects rolling out in over a dozen states.
Voices for Better Health recently released a video, Olivia’s story, that demonstrates the power of LTSS coordination to help people live with dignity and as much independence as possible. But, as Olivia’s Story emphasizes, getting LTSS right requires:
- a comprehensive in-home assessment that takes into account a person’s needs, preferences and goals, not just a checklist assessment
- a consumer and an informed and independent advocate working together to develop an effective, integrated plan for LTSS
- a role for the coordinator on the care team
We hope Olivia’s Story inspires you to work for improved LTSS coordination. Because when it comes to caring for older adults and people with disabilities, getting the support you need shouldn’t be a matter of “luck.”