Care delivery will be a challenge for generations

President Joe Biden’s State of the Union address focused on the needs of healthcare providers, along with foreign policy, national security and economic challenges facing our nation. For caregivers, the challenges are enormous, and it is clear that caring for dependent family members requires new paradigms.

Few of us think much about caregiving until someone in our family needs it. Then we are usually unconscious, because we do not know where to go for information or help. For most of us, the challenge comes later when parents can no longer care for themselves. Most families, including the estimated 5.4 million children caring for their relatives, face the problem with little preparation or foresight. Families around the world consider caring for aging parents a primary responsibility, according to the Organization for Economic Co-operation and Development.

In high-income countries, a smaller number of families can shoulder that burden, and in the U.S. this burden is increasingly delegated to federal or state governments through Social Security, Medicare, and Medicaid. In the future, the government will be forced to play an even greater role in the care of dependent citizens. Individuals who are not fully independent will require the intervention and support of various formal and informal sources of support.

The mention of caregiving in the State of the Union address underscores the current shortage of high-quality, affordable community-based care services to support family caregivers. Most people don’t realize that Medicare does not cover long-term care. It provides only a short period of care after hospital discharge. This is far less than what would be required for a disabled elderly person to stay at home. The national average cost of a semi-private room in an extended-stay home is $105,000 per year, according to a 2023 Genworth Cost of Care Survey.

The caregiving crisis has lasted for generations. What can a family do? A multifaceted approach is necessary and must involve all levels of government, as well as private and charitable organizations.

A federal executive order was recently issued providing support for working family caregivers and incentives for small businesses. Congress was called on to do its part to improve caregiver support for all and create viable, community-based long-term care options for the most vulnerable. The American Rescue Plan Act provided $37 billion to states and the District of Columbia to expand Medicaid-funded home and community care services. Texas, like many other states, established programs that increased wages and offered bonuses to caregivers and white-collar workers ($10.60 per hour). Medicaid community care is critical and home care waitlists continue to grow.

In 2023, a federal executive order was issued specifically addressing coordination between medical care and community providers. This decision will help navigate the health care system and facilitate local implementation of the National Alzheimer’s Plan. An important part is training families on best care practices in dementia care.

Like other municipalities across the country, Texas cities like Austin are implementing these programs. They include expanding services and reach to ensure those in need know about them. One example is Aging and Disability Resource Centers, a federal program that funds states to provide training for caregivers and plan services in all 254 Texas counties. Nationally, this program reaches 70% of the population. Caregivers from working families would benefit from innovative approaches that balance home and work roles. A new initiative would offer care for children and the elderly in one location while providing intergenerational activities and breaks from caregiving. This model of care has been introduced in several places in Texas and elsewhere and will become more important in the future.

Now is the time to start planning and at least become aware of the options and realities of growing older. Families and the communities in which they live will face challenges for which they are often unprepared and ill-informed.

Jacqueline Angel is the Wilbur J. Cohen Professor of Health and Social Policy at the LBJ School of Public Affairs and professor of sociology at the University of Texas at Austin.

Dr. Toni P. Miles is the Pope Scholar-in Residence at the Rosalynn Carter Institute for Caregivers and professor emeritus at the University of Georgia.

A version of this op-ed appeared in the Dallas Morning News, San Antonio Express News and the Waco Tribune Herald.