top of page
Search

Empowering Family Caregivers: Why We Need Policy Change Now

Writer's picture: End Ohio's Parent PenaltyEnd Ohio's Parent Penalty

Nationwide, thousands of families who care for a loved one with disabilities face significant discrimination due to outdated federal laws. During the COVID-19 public health emergency, dozens of states took a groundbreaking step to address the severe shortage of healthcare providers by allowing homecare agencies to hire family members as paid caregivers through Medicaid's Home and Community-Based Services (HCBS). This temporary measure brought relief to countless families, but with the public health emergency ending in May 2023, outdated federal regulations once again make it possible for states to prohibit family members from being compensated for the care they provide to their loved ones.



The Impact of Paying Family Caregivers During COVID-19

The results of allowing family caregivers to be paid during the pandemic were remarkable. According to Dan Tsai, Director of Medicaid for CMS, "One of the silver linings of the pandemic was people seeing the impact of having paid family caregivers in the Medicaid program... we think it's important from a workforce standpoint, we think it's really important for care." The benefits were clear:


  • Addressing Caregiver Shortages: Family caregivers stepped in to fill critical gaps in care that could not be met by outside providers due to long-standing shortages.

  • Providing Consistent, Quality Care: Family members delivered stable and high-quality care, reducing turnover and ensuring that individuals with disabilities received reliable support.

  • Lowering Healthcare Costs: By providing consistent care, family caregivers reduced the need for costly emergency medical interventions and hospitalizations, saving Medicaid significant expenses.

  • Reducing Dependency on Welfare Programs: Households with paid family caregivers were less reliant on other welfare programs, such as food stamps, housing assistance, and mental health services, leading to further cost savings.

  • Supporting Deinstitutionalization: Families were able to bring loved ones home from institutional settings, providing care in a more supportive, familiar environment while significantly reducing Medicaid expenditures.


The Return to Outdated Policies

Despite this success, federal law has reverted to outdated regulations under Section 1905(a)(24) of the Social Security Act and 42 CFR § 440.167, which allow states to prohibit family members from being compensated for providing personal care services (PCS). Homecare agencies across the nation are now reporting that they do not have the staff to replace family caregivers, leaving countless individuals with disabilities at risk of losing vital support.


Family Caregivers Are Fully Qualified

During the COVID-19 public health emergency, family caregivers met the same rigorous training and compliance standards as all other professional caregivers. We underwent background checks, completed extensive training, clocked our hours using the same electronic systems, maintained detailed records, and were supervised by registered nurses (where applicable). In every way that matters, family caregivers were just as qualified as outside professionals--often more qualified. So why are states now prohibiting us from being compensated for this essential work?


It's Time for Policy Change

The current caregiver shortage includes not just personal care aides but also skilled nurses for medically fragile individuals. During the pandemic, family caregivers proved that they could step into these roles and provide exceptional care. However, outdated laws, rooted in an era of institutional care, are now deepening the caregiver crisis. Our healthcare policies must evolve to reflect modern needs:


  • End the Option to Prohibit Family Caregivers: Family members should be able to provide care for their disabled loved ones without facing financial penalties. States should not have the option to exclude family caregivers from Medicaid plans that use federal funding.

  • Allow Family Caregivers to Serve All Relatives: Policies should support family members in caring for children, spouses, and aging parents with disabilities.

  • Incentivize States to Support Family Caregiver Programs: Increased federal matching funds and additional support for programs like Licensed Health Aides or Family CNAs can empower family caregivers to perform skilled nursing duties.

  • Recognize Family Caregivers as a Vital Workforce: By changing our healthcare laws to fully utilize the skills of family caregivers, we can help alleviate the crisis facing in-home care providers.


Why CMS Needs Congressional Action

CMS has been clear in its support for family caregivers, as demonstrated by their statements during recent meetings with Pay Family Caregivers National Coalition.* However, federal regulations are written into law, which means that CMS alone does not have the authority to change them. We need bold action from Congress and the White House to amend these outdated laws and address the ongoing caregiver crisis.


How You Can Help

We are calling on Congress and the new administration to take urgent action. This crisis demands the same level of bold, decisive leadership that we saw during the pandemic. Families are struggling, using more welfare programs, and facing financial ruin because they are being forced to choose between caring for their loved ones and maintaining their livelihoods.


Will you join us in calling for change? Please sign and share our petition. Our goal is to gather 50,000 signatures to show the incoming administration that this issue cannot be ignored. Together, we can make a difference.



Let's work together to create a more compassionate and effective healthcare system that supports families and strengthens communities. Thank you for standing with us.


*Transparency Disclosure: Lindsey Sodano, a leader at End Ohio's Parent Penalty, also serves on the leadership team of the Pay Family Caregivers National Coalition. We believe it's important to disclose these connections to ensure full transparency about our advocacy efforts and the collaborative networks we leverage to drive meaningful policy change.

32 views0 comments

Recent Posts

See All

Comments


Subscribe to Our Mailing List

  • White Facebook Icon

© 2024 Lindsey Sodano. Powered and secured by Wix.

bottom of page