GOP Bills to Repeal the Affordable Care Act Will Have a Critical Impact on Family Caregivers

Every day we talk with family caregivers from across the country and hear their stories of love, struggle, and heartbreak. Many families count on Medicaid for services and they know that their loved one will need home and community based services or a nursing home in the future. Life savings, retirement plans, and caregiver assets are all going to pay for care now — but what will be available in the future for all of us who care for others or worry about care for ourselves? The time to find out and to act is now, as the Senate GOP plan is on a fast track for a vote this week. Your experience as a caregiver and voice is important and should be heard NOW.

Now that both the House and the Senate have produced repeal and replace bills on the ACA, the analysis on the proposed TrumpCare is this:


Tens of thousands of individuals will lose coverage while older adults will face significantly higher premiums for less benefits. Interactive map by county calculates and compares the ACA to estimated BCRA premiums and credits (Kaiser Family Foundation).


Medicaid — the program that funds in-home and community based services, nursing home care, and health insurance — will be cut by over 700 billion dollars and with other budget cuts it is expected to top a trillion dollars. Medicaid will be substantially restructured to the detriment of older adults, those with disabilities, and special needs children.


Savings and cuts of between 700 billion to a trillion dollars — mainly by cutting services under Medicaid, the nation’s safety net program — will largely go to the wealthiest individuals in the form of a tax cut.


For individuals of any age, protections for pre-existing conditions are not assured under the GOP plan. Where you live will matter as the states are free to design the health care benefits and conditions offered by insurance companies. And these plans can be determined by the Governor and the State Insurance Commission, bypassing the state legislatures and public disclosure.

How do the GOP bills in the House and the Senate affect family caregivers of adults with disabilities or multiple health conditions such as dementia, stroke, Parkinson’s, COPD, CHF, and other conditions?


Depending on the state, caregivers caring for a relative who is spending down their assets, (or on a Medicaid program), may face wait lists or fewer hours of service across providers when they finally become eligible for Medicaid. No state is able to fill in the revenue lost from the proposed cuts in Medicaid funding. States have few options: pay providers less; change eligibility criteria; or provide less service to individuals. Who is expected to take up the slack? Families.


Employed caregivers may find that the volume of hours of services for their relative will be cut, leaving gaps in care during a workday. And, if you are over 50 — and working in a job or multiple jobs without health care benefits, or if you have quit your job — you may find your healthcare premiums skyrocketing. Under the ACA, the premium charged to older adults is allowed to be a maximum of three times that of a younger person. Under the GOP bills, the premium can be five times that of a younger person and the subsidies will likely be smaller. (See AGE TAX section above.)


Family caregivers who are thinking about their own future needs should know: 70% of individuals over 65 will need some type of long-term care and support over their lives. Most will get help from family and friends, but almost all families need help with more complex and consuming care needs. Paying privately is expensive: a home care aide is estimated at $3,861/month; $3,628/month for assisted living, and $7,698/month for nursing home care. By the time baby boomers will need care Medicaid funding will be cut, capped, and no longer tied to changing needs within the states. The proposed cap in the GOP plan is not expected to keep pace with the aging demographics of the country. The Medicaid safety net will be changed forever for those needing services in the future and many will not be able to save the now-estimated $240,000 needed by a couple to cover their long-term care service needs.

States and communities cannot back fill the revenue needed to keep pace with demand. The costs are too high and many communities where Medicaid is the most used are not economically positioned to increase local revenue. Who is expected to take up the slack? Families.

What Can You Do to Stop This Effort?

Call your Senators NOW to oppose the Better Care Reconciliation Act:

In particular, call these key Senators:

  • Sen. Shelly Moore Capito (WV)
  • Sen. Lisa Murkowski (AK)
  • Sen. Dean Heller (NV)
  • Sen. Dan Sullivan (AK)
  • Sen. Jeff Flake (AZ)
  • Sen. Susan Collins (ME)
  • Sen. Bill Cassidy (LA)
  • Sen. Bob Corker (TN)
  • Sen. Rob Portman (OH)
  • Sen. Cory Gardner (CO)
  • Sen. Richard Shelby (AL)
  • Sen. Luther Strange (AL)
  • Sen. Pat Toomey (PA)
  • Sen. Lamar Alexander (TN)

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