How COVID-19 Is Making the Caregiver Crisis Worse

We have a caregiver crisis, particularly among direct care workers. I believe COVID-19 will make this crisis worse. We need to do something about it, and now is the time.

• The Mighty’s Caregiving Toolkit

What is the caregiver crisis?

There are not enough caregivers for the people who currently need help. Baby boomers are aging rapidly. Advances in medicine and technology mean people are living longer and fuller lives and babies being born with developmental disabilities are surviving and thriving. People turning 65 today have a 70 percent chance of needing care services at some point in their lifetimes. One in four Americans live with a disability. Thus, the demand for long-term care services is high and increasing.

Having family members provide these services is not an option for many. Take my family: our two wonderful sons live with a developmental disability. My husband and I are raising them to live independently, but they will need support throughout their lives, and they are likely to outlive us.

What do direct care workers do?

Direct care workers are professionals who provide daily assistance to people who are not able to live their lives without significant help. Direct support professionals (DSPs) include direct care workers who assist people living with developmental disabilities. In private homes and in nursing homes, direct care workers and DSPs support people by preparing meals and medication, assisting with eating, bathing, getting dressed, using the bathroom, and keeping homes clean. In schools, classroom aides provide assistance so students with developmental disabilities and mental health disabilities can learn and take part in their school communities. They provide transportation, support employment, and help people get out and socialize. They provide support with basic things we all do every day.

Who do they serve?

All of us — any one of us or a loved one could need the services of a direct care worker. When we or our loved ones are faced with a disability or old age, direct care workers become critical for us to continue our lives in our schools, homes, workplaces and community and when transitioning into assisted living. Again, take our family as an example: with the help of DSPs, our children could live independently in our community throughout their lives.

What challenges do direct care workers face?

Direct care workers face many challenges: wages are low, and many have no access to health insurance or retirement benefits. Many live beneath the federal poverty line and rely on Medicaid as their source of health insurance. There is limited opportunity for professional development or access to career advancement, even as they serve clients with complex needs and shoulder demanding workloads. As a result, there are major staff shortages and high turnover. This causes lower quality of care at increased cost.

What do we need to do about it?

1) Understand this is a problem that will directly impact us in our lifetimes. And the current shortage of direct care workers will be exacerbated by the virus crisis and its long-term impact on people’s health.

2) Recognize the value of direct care workers’ contributions. Our lives matter. Our family members’ lives matter. Direct care workers’ lives matter. We must take action to promote the importance of this profession.

3) Demand that officials address this crisis by ensuring higher salaries, health insurance, retirement savings, and proper training and credentialing. Demand a system change that brings down costs while helping more people live in their own homes and communities.

As a parent of children with a disability, I can tell you that our greatest fear is what will happen with our children when my husband and I are no longer here. We — just like so many other families — need direct care workers, including DSPs, to assist our sons so they can lead fulfilling, productive lives in our community.

I envision a future where, just as children grow up wanting to become a teacher, nurse, doctor, or firefighter, they will grow up wanting to become a direct care worker for the people we love and value: our seniors and people living with disabilities of all kinds. There is much dignity in the work of caring for others. This is a system change we all need now.

For more on the coronavirus, check out the following stories from our community:

• If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me
• Why I’m Worried About Rationing If My Child With Down Syndrome Gets COVID-19
• I’m Afraid I’ll Be Told to ‘Sacrifice’ My Health for COVID-19 Patients
• Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus
• 10 Face Masks People With Chronic Illness Recommend