Today, America’s vision of long-term care is grim. Supports and services for frail elders or younger people with disabilities are delivered in a fragmented, disorganized way that puts recipients of care at risk for serious harm or even death, and likely wastes billions of dollars.
Indeed, if the goal of supports and services is to provide the best possible quality of life for those who need personal assistance, we are doing almost everything wrong.
But there is a better way. Imagine a system that focuses on personal assistance rather than needless or harmful medical interventions, fosters independence and choice rather than institutional or highly regulated and constrained home care, and builds on existing support systems such as families and communities, rather than leaving people isolated and alone.
Last week, the Long-Term Financing Collaborative (#LTCollaborative), an ad hoc group whose members represent consumers, providers, the insurance industry, and a broad ideological spectrum of policy experts, released a new vision for long-term supports and services. (Full disclosure: I am a member of the group.)
Our foundation is built on four key pillars: Better integrating supports and services with medical care; supporting families; supporting paid caregivers; and leveraging existing institutions such as neighborhoods, faith communities, and workplaces. Let’s take them one at a time:
Integrating supports and services and medical care: The gulf between the medical system and the world of personal assistance is enormous. Physicians are often unaware of the personal care needs of their patients and the resources that are available to serve them. The problem is made worse by a bifurcated payment system. Medicare and private health insurance, for example, pay for medical care but not long-term care. For older Americans and many younger people with disabilities, Medicaid pays for long-term care but not medical care. The result: No coordination of care.
To help address the problem, the collaborative made several recommendations:
- Redesign delivery systems to break down these barriers.
- Encourage new payment models that encourage integrated care and discourage poor, fragmented care.
- Support state efforts to break down barriers between Medicaid services and non-Medicaid services, such as housing, transportation, nutrition, and information and referral.
- Revise payment and licensing systems to encourage the use of tele-health and assistive technologies.
Supporting families: Spouses, adult children, and other family members are the bedrock of our care system. But family caregivers often do this difficult work with no training and little support. To help them, we proposed including family caregivers in care teams and engaging them in developing care plans, giving them access to a loved one’s medical records (with permission of the patient, of course), better caregiver training, and a new national strategy to support the special needs of family caregivers of people with dementia.
Supporting paid aides: We recommended more flexible state practice and licensing rules that allow health care workers and direct care workers to “work to the top of their skills.” We also endorsed better training and higher wages and benefits for care workers.
Building on community resources: With the ratio of family caregivers to older Americans shrinking rapidly, we need to leverage existing community resources that can pick up some of the care now provided by relatives. Ways to accomplish this include: more flexible local regulations that allow solutions such as ridesharing and group homes; better engagement with community organizations such as faith communities, community health centers, and schools to support older adults and younger people with disabilities; and expansion of initiatives such as senior villages.
The collaborative was not trying to propose specific reforms. Rather, we wanted to provide a new framework for policymakers to think about how to deliver long-term services and supports. As more Americans age with multiple complex chronic conditions, it will be critical to reimagine the ways they receive care and to support the people who are assisting them. The collaborative’s recommendations are a step in that direction.