ANN ARBOR, MI — It’s a fact: caregiving for people living with disabilities has become the defining shared experience for tens of millions of adults in the United States. In bipartisan election-eve and election-day polling, voters from both parties said they strongly believe family caregivers would benefit from several changes.
Forty-one percent stated that families would benefit from changes in three areas: financial help, easier access to care workers and in-home services, and making housing suitable for people with disabilities. In terms of specific support for a single policy, 20 percent said they would benefit most from financial help, 20 percent said they would benefit most from easier access to care workers and in-home services, and 11 percent said they thought family caregivers would benefit most from making housing suitable for people with disabilities.
These results are being presented today at the America CARES Forum in Washington, D.C., sponsored by Altarum Institute and Caring Across Generations. The Forum was designed to launch a substantial and continuing movement that will amplify the voices of tens of millions of caring Americans across the country.
Attendees completed pre-Forum surveys on policy preferences, rating 20 policies for family caregivers and care workers. The top five most strongly supported policies among policymakers, experts, advocates and activists are:
- Ensuring that housing is adapted, safe, and suitable for older adults and people with disabilities;
- Creation of a comprehensive and frequently updated repository of resource referrals for social and supportive services;
- Implementation of assessment and support of family caregivers within Medicare, Medicaid, and Dept. of Veterans Affairs’ programs;
- Creation of employer incentives through tax credits and other means that promote flexible workplace policies (e.g., compressed work weeks and teleworking); and
- Expansion of community-based programs offering comprehensive medical and long-term services and supports such as PACE (Program of All-Inclusive Care for the Elderly) for Medicare beneficiaries.
When asked to rank policy preferences for potential federal action, the policies most often ranked number one were flexible workplace incentives for employers and improving care worker benefits, including an increase in pay to $15 an hour. Policies ranked highest for action at the state level were creation of a better resource referral system for social supports and services, and improving care worker pay and benefits. Among those working in policy, the top-ranked federal priority was a publicly financed state or federal insurance program to assist older and adults, individuals with disabilities and their families to pay for long-term care.
Slides and data can be found here.
Affordability for long-term care is surfacing as a clear and growing challenge for families. Coinciding with today's Forum, Caring Across Generations also issued new recommendations for a bold new, state-based, long-term care services and supports (LTSS) benefit that would go a long way towards helping those most feeling the caregiving squeeze experiencing the high cost of care: family and professional caregivers and middle-class families. The full paper and analysis, Preparing For the Elder Boom: A Framework for State Solutions, was developed by a group of academics, advocates, and policy experts convened by Caring Across.
“Being a family caregiver today is way too difficult,” said Anne Montgomery, Deputy Director of Altarum’s Center for Elder Care and Advanced Illness. “We don’t even identify caregivers in medical records, and there’s no easy way to find reliable assistance at home for your parent, your spouse, and anyone else you love if they need ongoing care. Caregiving is part of life and we embrace that -- but we all need help to do it well. We need an actual system of long-term care, and that doesn’t exist. At the Forum, we’re building a movement to better understand what we can accomplish rapidly -- and to insist on more attention from policymakers.”
“It is time to not only create a substantial movement to amplify the voices of tens of millions of caring Americans across the country - but also to put forth and start acting on solutions," said Josephine Kalipeni, Director of Policy and Partnerships for Caring Across Generations. “We cannot wait for a crisis to spur our leaders into action. The good news is states can start working now to develop a new care system that works for all of us.”
More information and ways to participate in building family caregiver and care worker issues into policy agendas at the local, state and national levels can be found here. And to join the America CARES movement, add your voice with many others, and get information that you can use to launch parallel initiatives in your own area, please contact us at medicaring.org.
About Caring Across Generations
Caring Across Generations is a national movement of families, caregivers, people with disabilities and aging Americans working to transform the way we care in this country. By harnessing the power of online and grassroots organizing and culture change work, we are shifting how our nation values caregiving and calling for policy solutions that enable all of us to live well and age with dignity. For more information, please visit caringacross.org.