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Day 19: The Imperative for Caregivers to Speak Out and Help Shape Policy

November 19, 2011

By Debra Ness, Leader, Campaign for Better Care and President, National Partnership for Women & Families

Too often, being a family caregiver is like running an obstacle course: carrying medical records from doctor to doctor, carving out time to attend medical appointments and trying to be sure that you fully understand your loved one’s needs, juggling care for a relative while trying to meet your own job and family commitments. It’s hard and often frustrating work, and it’s led thousands of family caregivers to become activists who are using their experiences to shape health reform implementation.

To harness the power of these powerful activists, the National Partnership for Women & Families joined with Community Catalyst, the National Health Law Program and The Leadership Conference on Civil and Human Rights to create the Campaign for Better Care. With generous funding from The Atlantic Philanthropies, the Campaign is working with patients and family caregivers to ensure that health reform has a broad and lasting impact. The goal is to significantly improve the way we deliver health care so the system finally works for the most vulnerable among us – older adults, patients with multiple chronic conditions and their family caregivers.

With support from organizations like the Family Caregiver Alliance and the Campaign for Better Care, patients and family caregivers from across the country are advocating at the federal and state levels more than ever. They are insisting that new models of delivering care be truly patient- and family-centered. They are calling for team-based and multi-disciplinary approaches that include important services that have not been readily available to many: geriatric assessment, care planning, comprehensive care coordination, transition management between care settings, medication management, and community support for older adults and their family caregivers.

At the same time, in Washington, D.C. we are doing the hard but important behind-the-scenes work to ensure that the Affordable Care Act (ACA) is implemented in ways that meet the particular needs of vulnerable older patients, and make quality, affordable, coordinated health care a reality for families.

By sharing their personal experiences, family caregivers play a compelling and essential role in influencing policy and public opinion. They are telling the stories that underscore the problems in our health system today, and how the decisions made in Washington affect people’s lives. In doing so, caregivers are helping to move our nation closer to the day when essential health services are covered, when preventive care and community based support and services are priorities, and when care is truly coordinated. By speaking out about their own unmanageable burdens, caregivers hasten the day when others families will have fewer of these burdens to bear.

The ACA contains the key ingredients to transform our health care system from one that is shaped by the interests of providers and payers to one that is dedicated to the needs of the patients, and to providing the services and supports that they and their families need. This is long overdue. What this law promises is what the nation needs most: doctors who talk to one another, medical records at our fingertips, and a system that is built around addressing the needs of patients and families. Its real promise is a health care system in which caregivers and the people they care for no longer have to fend for themselves in an uncoordinated and fragmented system.

This month, as we mark National Family Caregiver Month, the U.S. Supreme Court announced that it will soon consider whether to let stand key provisions of this landmark health care reform law. There’s a lot at stake – in Congress, the courts, and at the community level as this national conversation continues. That makes it more important than ever that this month –and every month –caregivers speak out about the imperative to make the health care system work for all of us.

What we do – and don’t do – to address the caregiving challenges will families today and in the future, and it will affect our strength, competitiveness and health as a nation for years to come. The time for action is now. I urge you to visit www.CampaignforBetterCare.org to get involved!

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Day 19: The Imperative for Caregivers to Speak Out and Help Shape Policy by Debra Ness, Leader, Campaign for Better Care and President, National Partnership for Women & Families is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.