Change.org: CMS Keep Parents & Spouses As Paid Caregivers For Those With Disabilities

CMS Keep Parents & Spouses As Paid Caregivers For Those With Disabilities

Nathan Hill started this petition to Xavier Becerra, and it now has 2,249 signatures

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Nationwide, thousands of families who have a family member with disabilities suffer significant discrimination from Centers for Medicaid Services (CMS). During the COVID public health emergency, CMS authorized states to allow homecare agencies to hire parents and spouses 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 CMS federal regulations 42 CFR § 440.167 - Personal care services and 42 CFR § 441.105 once again prohibit parents and spouses 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 parents and spouses performing PCS for their loved ones with disabilities.  To provide PCS during the public health emergency, parents and spouses 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 is CMS discriminating against parents and spouses by prohibiting us from being paid caregivers? The success of employing parents and spouses as PCS providers during the pandemic has been tremendous and answered years long provider shortages in thousands of homes. As parents & spouses we 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 even exist while we fill the shoes uncompensated. The past three years of this pandemic has shown us that paying parents and spouses of those with disabilities to perform PCS actually works better, provides more stable care, creates healthier homes, and reduces our dependency on the welfare system. With such an acute caregiver crisis, it is not feasible or reasonable for Centers for Medicaid Services to require states to develop a 1915(c), Appendix K, or similar family caregiver waiver program. Such burden is forcing thousands of our homes without needful caregivers. This crisis calls for the same bold action as the pandemic, CMS would you please stop this discrimination against parents and spouses by making an interim rule that allows us to continue as caregivers through the homecare agencies? 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 Biden, Secretary Becerra, CMS, and Congress to immediately take the following action: Immediately declare the caregiver crisis a national public health emergency and automatically extend the Section 1135 and Appendix K waiver flexibilities allowing parents and spouses to be paid caregivers. This is the first step to rulemaking that will improve access to HCBS. Amend Section 1905(a)(24) of the Social Security Act, and related CFRs such as 42 CFR § 440.167 - Personal care services and 42 CFR § 441.105 by removing all language that prohibits legally responsible individuals (i.e. parent, spouse, legal guardian) from performing Personal Care Services for their loved ones. Further add to the language of the Social Security Act and all related CFRs that declares "states may not prohibit legally responsible individuals from being employed in the care of their special needs loved ones provided they meet the same qualifications required by law as any other caregiver". Join our facebook group of families from all over America advocating for this change: CMS Keep Parents & Spouses As Paid Caregivers For Those With Disabilities View family and homecare agency stories on this youtube channel: youtube.com/@sucessstorieswithnathan Sign this petition and pass it around PLEASE!

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