During the COVID-19 pandemic, many states allowed parents of children with significant disabilities to be paid caregivers under Medicaid—offering dignity, recognition, and financial support for the work they were already doing. But now, as emergency waivers expire, those programs are vanishing. Quietly. Quickly. And families are once again being left behind.In this PURGE 47 Edition, host Mark Ingrassia examines how states are handling (or mishandling) the rollback of parent caregiver pay, the devastating effects on families, and why this is about more than just money—it’s about equity, justice, and respect.📌 What You’ll Learn in This Episode:Which states are continuing caregiver pay and which are notThe policy arguments on both sides—including federal pushbackHow families are scrambling to fill care gapsReal-world stories from Idaho, Indiana, New York, and beyondWhat options remain for families after caregiver pay is cutHow you can advocate for change at the state and federal levels📝 Resources & References:“Medicaid cutbacks will affect unpaid family caregivers” – Wisconsin Examiner, Erik GunnDisability Scoop and Idaho Statesman reporting on Idaho caregiver program cutsBoard for People with Developmental Disabilities (BPDD) caregiver survey (Wisconsin)New York CDPAP and Medicaid Waiver info – NY Post, Times Union, NYS DOHComplex Care Act advocacy updatesLegislative tracking via SpecialEdRising.com🧾 Full bibliography available New York State Department of Health. (n.d.). Care at Home waiver program for developmentally disabled children. Retrieved from https://www.health.ny.gov/publications/0548/care_at_home_dev_disabled.htmNew York State Department of Health. (2014, July 7). 1115 Waiver special terms and conditions. Retrieved from https://www.health.ny.gov/health_care/medicaid/redesign/2016/2014-07-07_waiver_authority_stcs.htmCampbell, C. (2024, May 7). Parents push N.Y. to support care of medically fragile children. Times Union. Retrieved from https://www.timesunion.com/news/article/parents-push-n-y-support-care-medically-fragile-19986153.phpColón, J. (2024, July 4). Commentary: PPL is failing caregivers and the people they care for. Times Union. Retrieved from https://www.timesunion.com/opinion/article/commentary-ppl-failing-caregivers-people-care-20323023.phpTimes Union Editorial Board. (2024, May 23). Another problem with New York’s CDPAP overhaul. Times Union. Retrieved from https://www.timesunion.com/opinion/article/another-problem-new-york-s-cdpap-overhaul-20053619.phpNew York Post Editorial Board. (2024, October 8). Opinion: Hochul bows to nursing unions in $12B senior care power play. New York Post. Retrieved from https://nypost.com/2024/10/08/opinion/hochul-bows-to-nursing-unions-12b-senior-care-power-play/Campanile, C. (2024, December 1). Home care agency exec accuses Hochul team of bid-rigging. New York Post. Retrieved from https://nypost.com/2024/12/01/us-news/home-care-agency-exec-accuses-gov-hochul-team-of-rigging-bid-process-for-9m-program/Campanile, C. (2024, December 2). Rep. Ritchie Torres calls for bid-rigging probe of Hochul’s $9B home care contract. New York Post. Retrieved from https://nypost.com/2024/12/02/us-news/ritchie-torres-calls-for-bid-rigging-probe-of-hochuls-9b-home-care-contract/Wikipedia contributors. (n.d.). New York State Office for People With Developmental Disabilities. Wikipedia. Retrieved from...

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