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Changes to Medicaid: A Bad Deal for Family Caregivers

March 15, 2017

By Kathleen Kelly, Executive Director, Family Caregiver Alliance

As of this writing, the policy battle over repealing and replacing the Affordable Care Act (ACA) continues in Congress. The issue that gets the most coverage at the moment is how big the loss of health insurance coverage for individuals will be under the proposed Republican sponsored American Health Care Act. Just released estimates by the nonpartisan Congressional Budget Office state that 24 million Americans will lose their health insurance coverage within a decade.

Also included in the repeal bill are dramatic changes to Medicaid which currently provides community long-term services and supports to disabled and older adults and acts as a safety net for all of us in the future. These changes directly affect family caregivers as they relate to the availability of home and community-based services for disabled and older adults.

Medicaid provides federally required health and long-term care services in the states for low income disabled and older adults. In its basic package of services, states must cover long-term nursing home stays. Within the past 15 years states have experimented with supports, called Home and Community-Based Services (HCBS), that have provided alternatives to nursing homes.

This has allowed individuals a choice to receive services at home at a much lower cost with a higher level of satisfaction. These services are under special waivers proposed by the states and granted by the Centers for Medicare and Medicaid (CMS). Recently the balance was tipped for the first time in favor of home and community-based services serving more disabled and older adults than nursing homes.

One of the services most often used by low income disabled and older adults are Personal Care Services that provide an aide to come into the home to assist with care tasks. Many of the states that have HCBS waivers that include Personal Care Services also have Participant Directed or Consumer Directed Care allowing for the adult with disabilities to hire their own aide. Many states also allow family members to be paid to provide these services.

When family caregivers ask us: “How can I get paid to provide care to my relative?” This is the program that best offers the opportunity for those who have quit or pared back their own employment to have some source of income while providing the care to their family member.

Under the repeal and replace policies within the American Health Care Act, Medicaid would become a “block grant” that sets a capped amount to be given to the states instead of allowing Medicaid budgets and reimbursements from CMS to rise or fall according to the need and demand. All expert health care analysts who have reviewed this change agree on this one fact: block granting Medicaid funds for the states means less funding in the future than it is now, and dramatically so.

To make up this shortfall, states have limited options: change eligibility requirements; change payments to providers; severely limit services; or raise state taxes or cut other programs within the state. Most states would lose millions of dollars and the deficit would get larger over time because we have an aging population who will need these services in the future.

For family caregivers, Medicaid block grants would mean an almost immediate loss of the amount of services provided currently as states find ways to increasingly trim expenditures.

What is the likely prospect of raising enough revenue to cover these services within a state? Nil. What is the likely prospect of community-based nonprofits filling the gap? Nil. Why? Because this is a problem beyond the scope of individual efforts and rests with the national collective will to make sure that disabled and older adults and their family caregivers have the vital services that will allow them to remain in the community.

It is clear that Medicaid block grants are a bad deal for family caregivers in a variety of ways: loss of health insurance coverage, loss of home and community-based services, and loss of safety net security for those disabled and older adults and their family caregivers. It almost guarantees more stress and pressure for families as they scramble to find help and support with care.

We talk with families daily who never thought they would need Medicaid services, but they have spent their life savings on caring for a family member. Even if you don’t think you will need these services, it is important to retain them as a safety net for everyone, now and in the future.

If you think this is an important issue, the time to make your voices heard is now. Call, email, or mail your Congressional Representatives now. If you are not sure who your Representative or Senator is in your district, look them up here: www.house.gov/htbin/findrep  |  www.senate.gov/senators/contact. If you would like to read more on block granting Medicaid, here is a link to basic background information: Block Grants: A Bad Idea for Medicaid.

Here is a list of organizations that track and report on Medicaid Block Grants and other components contained in the current federal legislation:

  • AARP Public Policy Institute — source of information about specific impacts of ACA repeal including Medicaid HCBS.
  • American Bar Association — the Health Law Section has created a Health Reform Task Force to monitor the potential repeal and replacement of the ACA.
  • Center on Budget and Policy Priorities — the Center is a leading source of analyses of federal budgeting developments affecting all sectors of the economy including health care. Just launched: Sabotage Watch: Tracking Efforts to Undermine the ACA. Depressing title — good information.
  • CLASP (formerly the Center for Law and Social Policy) — the Center is a long time provider of material regarding policies affecting low-income citizens
  • Commonwealth Fund — the foundation publishes in-depth materials regarding federal health programs.
  • Families USA — the organization is a long time advocate for health care reform and universal health care coverage.
  • Health Affairs Blog —  the leading health policy journal offers an open source blog site that contains frequent ACA-related posts.
  • Justice in Aging — the organization publishes detailed analyses of developments affecting low income seniors, with particular emphasis on Medicaid proposals.
  • Kaiser Family Foundation — the foundation issues daily bulletins and frequent analyses concerning health policy developments; it has recently added an interactive web page tracking all current ACA legislative activity.
  • National Health Law Program — protects and advances the health rights of low-income and underserved individuals and families.