Collaboration and bipartisan support have culminated in hope for the 90 million people in the U.S. who care for a sick family member.
The RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act passed through Congress unanimously in January. It means the Department of Health and Human Services is now under starter’s orders to develop and maintain an integrated national strategy to support family caregivers. A strategy which will bring together federal agencies and representatives from the private and public sectors, including caregivers, healthcare professionals, employers and state and local officials to make recommendations to deliver much-needed help for family caregivers.
It’s a win for the 30 organizations that have been working together to gain cross-Congress support for the bill since it was drafted around four years ago.
Caregiver Action Network (CAN), the nation’s largest consumer-facing non-profit group working with the caregiving community, has been at the forefront of the campaign. John Schall, CAN CEO, talks to Change Together about the importance of the act, what it took to get to this stage, and what more needs to be done.
What does the passing of the RAISE Family Caregivers Act mean for caregivers and the people they look after?
Family caregivers are a vital part of the healthcare team for their loved ones. They are often managing complicated medications, more than half are performing sophisticated medical and nursing tasks that we associate with doctors and nurses, and they face a tremendous toll on their own health because of the stress of the role.
The Act is a big leap forward for family caregivers in the U.S. It is the first time the Federal Government has said it will look at what support is in place for family caregivers and what they will need in the years ahead. That kind of systematic look is exactly what we need. Right now, there are policies that affect caregivers but there is no unified strategy.
Who was involved in bringing the RAISE Family Caregivers Act to pass?
It has been a group effort led by AARP and with the involvement of 30 different organizations concerned with family caregivers. It is because of that strong collaboration that we were able to get enough attention from members of Congress.
It was very important that from the beginning that it was a bipartisan effort. Not many bills are getting passed in such a divided Congress but we had support from Republicans and Democrats. It has taken a lot of people and a lot of time, but it has finally come to fruition. It was unanimously passed which seldom happens any more.
What is your hope for the National Family Caregiving Strategy?
The strategy has the potential to be hugely beneficial. We are facing a caregiving cliff and this strategy needs to recognize that things are changing in the landscape of family caregiving.
Our own surveys have found that in 70% of cases, it’s the family caregivers who manage medications – rather than the patients themselves – and the more serious the condition the more likely that it’s the family caregiver who manages the medications. They are also performing sophisticated medical and nursing tasks, such as wound care and infusion therapy. Not only do we need to enable them to do this important work, but we need to put support in place to protect their own health. Family caregivers are more likely to suffer stroke, depression, high blood pressure or diabetes than non-family caregivers. There are a whole number of very important issues that the strategy needs to address.
What role will the Family Caregiving Advisory Council play in rolling out the strategy?
The Department of Human and Health Services will appoint a council of up to 15 people to represent stakeholders, including family caregivers. This advisory council will meet every few months and have responsibility for putting the strategy together. CAN would love to be part of the advisory council and has reached out to the department to indicate that.
It’s really important that this process isn’t just the government, but that it involves the outside stakeholders who are living the challenges that family caregivers face every day.