Do You Know About Medicaid’s Self-Directed Services Programs?

Do You Know About Medicaid’s Self-Directed Services Programs?

Taking care of aging parents, family, or loved ones with disabilities can be both a selfless and compassionate act but it also can be challenging financially. Lost income due to family caregiving is estimated at $522 billion each year.


Around 53 million people annually provide a broad range of assistance to support the health, quality of life, and independence of an aging family member, or a loved one who has a disability or chronic health condition. Another 2.7 million grandparent caregivers – and an unknown number of other relative caregivers – open their homes each year to millions of children who cannot remain with their parents. 


In recent years, additional attention has been given to measuring the financial impact of family caregiving such as lost wages, reduction in workforce, and the out-of-pocket costs that caregivers often incur for meals, transportation, medical supplies, toys, educational tools, home modifications, and more. When the challenges become overwhelming and family caregivers can’t provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions or to foster care – the cost of which is typically borne by taxpayers. Many caregivers are not aware they can get funded by programs like Medicaid, Veteran Affairs, and Medicare to ease the financial burden. 


Just recently in September, the U.S. Department of Health and Human Services (HHS), through its Administration for Community Living, released the 2022 National Strategy to Support Family Caregivers. It highlights nearly 350 actions the federal government will take to support family caregivers in the coming year and more than 150 actions that can be adopted at other levels of government and across the private sector to build a system to support family caregivers. This report has been a year in the making since it was initially announced by the Biden-Harris administration and HHS. 


The RAISE Family Caregivers Act Initial report to Congress made recommendations that were organized around five key goals: 


  1. Improved awareness of and outreach to family caregivers 
  2. Inclusion of family caregivers in the care team 
  3. Services and support for family caregivers 
  4. Financial and employment protections; and 
  5. Data, research, and best practices


Some of the recommendations highlighted in the report include providing:

  • Incentives for healthcare systems to incorporate caregivers into decision-making for the person receiving care; 
  • Redesign the Medicaid eligibility process so that the care recipient does not have to deplete most of their assets to qualify for services and support; 
  • Expand the FMLA to include small employers and a broader definition of “family” to include grandparent and kin caregivers; 
  • Include family caregiver out-of-pocket care expenses (products and services) as medical expenses eligible for tax credits; 
  • Allow kin and grandparent caregivers who have primary responsibility for a child to claim the federal Child Tax Credit; and 
  • Introduce a range of incentives to encourage employers to adopt caregiver-friendly practices, including tax incentives; and 


This new strategy and report is expected to be a living document and updated every two years, as required by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017. Currently, until Nov. 30, the public can provide comments to the two advisory councils  overseeing this national caregiving roadmap. 

To learn how you can get paid as a family caregiver or to ensure you are getting the support you need, make sure to sign up and get our free six-step guide

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