Nationwide, thousands of families who have a family member with disabilities suffer significant discrimination from outdated federal law. During the COVID public health emergency, Centers for Medicaid Services (CMS) authorized states to allow homecare agencies to hire family members of those with disabilities to provide personal care services (PCS) for their loved ones. This was done to circumvent healthcare provider shortages and was delivered through Medicaid's Home & Community Based Services (HCBS). 

Now that the public health emergency has expired (May 11, 2023), Section 1905(a)(24) of the Social Security Act, and federal regulations such as 42 CFR § 440.167 - Personal care services and 42 CFR § 441.105 once again prohibit family caregivers from providing PCS for our loved ones with disabilities in the midst of one of the worst caregiver shortages our nation has ever seen. Homecare agencies nationwide are saying they don't have any staff to replace the family caregivers performing PCS for their loved ones with disabilities. 

How successful was paying family caregivers during the COVID PHE?

The success of employing family caregivers during the COVID pandemic was so tremendous that Dan Tsai, Director of Medicaid for CMS, said on September 5th, "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 direct impact CMS realized by utilizing family caregivers:

• Family caregivers answered years long provider shortages in thousands of homes that could not be filled otherwise. 
• Family caregivers provided consistent, quality care that is almost impossible to achieve due to the high turnover and lack of outside caregivers.
• Disabled participants incurred less medical expenses due to receiving stable care from family caregivers, saving Medicaid costly hospitalization and treatment costs.
• Households with family caregivers were less dependent on other welfare programs such as food stamps, housing, mental health intervention, etc., resulting in a savings to other Medicaid welfare program costs.
• Families were able to bring their loved ones home from living in institutional settings and provide quality, in-home care at a tremendous savings to Medicaid.

We families want to care for our loved ones with disabilities, but we've been trapped in a flawed healthcare system that forces us to have outside caregivers, and drives us into poverty because those caregivers often simply don't exist while we fill the shoes uncompensated. The past three years of the COVID pandemic has shown us that paying family caregivers of those with disabilities actually works better, provides more stable care, creates healthier homes, and reduces our dependency on the welfare system.

What qualifications and oversight did family caregivers have during the COVID PHE?

To provide PCS during the public health emergency, family caregivers had to fulfill the same federal training and compliance as all other caregivers. We pass the same background checks, complete the same training, clock our shifts in the same EVV app, document the same paperwork, maintain the same annual compliance, and are supervised by the same supervising RNs. Given that we are officially trained caregivers and there's no difference between us and outside caregivers in qualifications or oversight, why does federal law discriminate against family members by prohibiting us from being paid caregivers?

How should America's healthcare policy leverage family caregivers to alleviate the crisis?

The acute caregiver shortage includes both personal care and habilitative service providers, as well as skilled nurses for medically fragile participants. During the COVID PHE, family caregivers were instrumental at successfully filling all of these roles for their disabled loved ones. America's current laws date back to our nation's days of institutionalism and consequently deepen the crisis. Our healthcare laws need to be amended to reflect our advancements so that:

• Family caregivers are no longer prohibited from providing care for their disabled loved ones.
• Family caregivers are able to serve minor and adult children, spouses, and aging parents with disabilities.
• States may not optionally choose to exclude family caregivers from state plans or waivers that utilize federal funds.
• States receive increased federal match dollars for family caregiver programs.
• States receive additional FFP points for Licensed Health Aide or Family CNA programs that allow family caregivers to fill skilled nursing duties for their disabled loved ones.

Family caregivers are the most loyal and loving workforce America has, changing our healthcare laws to utilize their services will help alleviate the crisis for in-home providers.

Why can't CMS make this happen without Congress and The Whitehouse?

CMS stated in a May 23, 2023 zoom meeting with our national group they are 100% in favor of employing family caregivers. However, the CFRs prohibiting family caregivers are federal law that CMS does not have the power to change. Congress, together with the Whitehouse, need to change the outdated federal laws that prohibit family caregivers.

Congress & The Whitehouse: This crisis calls for the same bold action as the pandemic, will you fix it today please?

The decades long, well documented caregiver shortage is a federal healthcare policy failure that has ballooned into an acute caregiver crisis. Right now our families are using more welfare programs, and going bankrupt and homeless because, while the COVID PHE has expired, the caregiver crisis is still here and there are no caregivers to hire for our disabled loved ones. Will you reach out to us and help change legislation today?

Have you read these national reports calling for paid family caregivers to be permanent policy?

The National Homecare Association of America's workforce report (March 2023) says "The workforce shortage in home-based care has reached crisis proportions" (p.1) and proposes permanent paid family caregivers (p.17). See the report here.

The National Council on Disability's report to the President, Strengthening the HCBS Ecosystem (Nov 2022), cites the shortage is worse now than ever before and states the Appendix K & Section 1135 flexibilities "should remain permanently—family caregivers should be paid, and CMS should make this a permanent to support the nation’s need for a strong HCBS system" (p.68). See the report here.

President Biden's April 18, 2023 executive order states "The Secretary of Health and Human Services shall consider rulemaking to improve access to home- and community-based services under Medicaid." Employing family caregivers improves access to HCBS and improves the health of participants by providing them with quality, consistent care. See the order here.

As the undersigned we petition President Trump, Secretary Kennedy, CMS, and Congress to immediately take the following action:

1. Create federal legislation to remove the CFRs that make paid family caregivers a state choice. Even though there are paid family caregiver options under all Home and Community Based Services (HCBS) waivers, SSA 1905(a)24 and related CFRs such as 42 CFR § 440.167 prohibit legally responsible individuals (including parents and spouses) from providing paid personal care services for their loved ones. This jurisdictional quagmire leaves room for state bias against family caregivers.
2. Increase the Federal Medical Assistance Percentage (FMAP) — the federal “match” on such programs. A higher FMAP would  encourage states to use this effective, cost-saving and humanizing approach to home care. Include provisions to prohibit states from reallocating these funds outside of their HCBS budgets.
3. Include family caregivers and people with disabilities in strategic conversations. Disabled people and family caregivers MUST be part of the conversation and their lived experience needs to inform the path forward. Concerns from state employees, service providers and other stakeholders, while valid, are secondary considerations.
4. Add a paid family caregiver policy to President Biden’s executive orders on the Caregiver Emergency.

Join our facebook group of families from all over America advocating for this change:

Public Facebook Page: Pay Family Caregivers National Coalition

Facebook Advocacy Work Group: https://www.facebook.com/groups/paidfamilycaregivers

View family and homecare agency stories on this youtube channel: youtube.com/@sucessstorieswithnathan

Sign this petition and pass it around PLEASE!