Consumer Voices Matter: Meaningful Engagement of Consumers and Caregivers in Long-Term Care

Patient-centered care is responsive to the needs and values of the individuals receiving care, and is one aspect of a high-performing, high-quality health care system. The Centers for Medicare & Medicaid Services (CMS) recently issued a final rule that gives Medicaid managed care consumers and their family caregivers a seat at the table by requiring states to include consumer and family caregiver perspectives in the design, implementation and oversight of state-managed long-term services and supports (LTSS) programs. States should view the new …

Are We There Yet? Efforts to Balance Long-Term Services and Supports

“Marvin L. Dawkins was a 53-year-old AT&T manager when a blocked blood vessel left him paralyzed. It took 11 years, one lawsuit, repeated tangles over Medicaid rules — and a chance meeting on a church van — before he could extract himself from a nursing home outside Baltimore. Now he lives in an apartment with the assistance of an aide, gets out for a job that he says gives him purpose, socializes with new friends and old ones, and revels …

Gaining New Ground: Solutions for Financing Long-Term Services & Supports

There is little dispute that the cost of long-term services and supports (LTSS) is daunting. The typical cost for care in a nursing home is about $91,250 a year, and the average annual base price for assisted living is $43,200. Few people can accumulate sufficient savings, even over a lifetime, to cover the costs. Most people rely on their families and friends for the bulk of their LTSS needs. Yet, family caregivers cannot do it all, and in the future, …

No Silver Bullet: Lessons From International Programs for Financing Long-Term Services and Supports

Life spans are increasing around the world, but countries differ enormously in how they deal with increasing demands for long-term services and supports (LTSS). AARP International recently sponsored a policy symposium on the LTSS systems in Germany, France and the United Kingdom to inform important discussions about how to reform the U.S. system. As AARP Executive Vice President Debra Whitman noted in her opening remarks, the costs associated with LTSS represent the largest uninsured risk to the retirement security of …

Older Adults and People With Disabilities Want Choice and Control

We all like to have choices. Being able to decide where we live and work, what we eat and how we spend our leisure time all enhance life satisfaction. Having a disability doesn’t diminish the desire for choice. But unfortunately, people with disabilities often lose control over how services are provided when they depend on Medicaid for home- and community-based services (HCBS), such as meal preparation or help with bathing and dressing. It doesn’t have to be this way. Participant-directed …

Help for Family Caregivers

While traveling to Erie, Pa., for a town meeting on family caregiving, I was reflecting on my family roots. A little more than 100 years ago, my Lithuanian grandparents immigrated to America and made Shenandoah, Pa., their first hometown. My grandfather worked in the coal mines and my grandmother, fluent in six languages, worked various jobs while raising five children – one of whom was my mom. My grandparents taught me about hard work and perseverance, and my parents taught …