From Paid to Forgotten: A Parent Caregiver Crisis

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 not
• The policy arguments on both sides—including federal pushback
• How families are scrambling to fill care gaps
• Real-world stories from Idaho, Indiana, New York, and beyond
• What options remain for families after caregiver pay is cut
• How you can advocate for change at the state and federal levels

📝 Resources & References:

• “Medicaid cutbacks will affect unpaid family caregivers” – Wisconsin Examiner, Erik Gunn
• Disability Scoop and Idaho Statesman reporting on Idaho caregiver program cuts
• Board for People with Developmental Disabilities (BPDD) caregiver survey (Wisconsin)
• New York CDPAP and Medicaid Waiver info – NY Post, Times Union, NYS DOH
• Complex Care Act advocacy updates
• Legislative 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.htm

New 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.htm

Campbell, 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.php

Colón, 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.php

Times 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.php

New 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 https://en.wikipedia.org/wiki/New_York_State_Office_for_People_With_Developmental_Disabilities

Reddit users. (2023–2024). Various discussions on CDPAP and home care in New York. Retrieved from:

• https://www.reddit.com/r/Albany/comments/1i1p6f5/
• 
  
• https://www.reddit.com/r/CaregiverSupport/comments/17rnlqu/
• 
  
• https://www.reddit.com/r/tax/comments/1jcacef/
• 
  
• https://www.reddit.com/r/healthcare/comments/1037it1/
• 
  

Centers for Medicare & Medicaid Services. (n.d.). Appendix K: Emergency preparedness and response and COVID-19. U.S. Department of Health and Human Services. Retrieved from https://www.medicaid.gov

Disability Scoop. (n.d.). National disability news for self-advocates, professionals & families. Retrieved from https://www.disabilityscoop.com

Family Voices. (n.d.). Family-led organization supporting children and youth with special health care needs. Retrieved from https://familyvoices.org

Fixler, K. (2024, June). Idaho ends program that paid parents to care for children with disabilities. Idaho Statesman. Retrieved from https://www.idahostatesman.com

Idaho Department of Health and Welfare. (2024). Budget and Medicaid program data on family caregiver reimbursement. Boise, ID.

KFF Health News. (n.d.). Independent source for health policy news and analysis. Retrieved from https://kffhealthnews.org

National Core Indicators. (2023). Staff Stability Survey Report – 2022. Retrieved from https://www.nationalcoreindicators.org

Paraprofessional Healthcare Institute (PHI). (2022). Direct care workforce data center: Turnover, wages, and policy reports. Retrieved from https://www.phinational.org

The Arc of the United States. (n.d.). Public policy agenda: Supporting paid family caregivers and community living. Retrieved from https://thearc.org

🫶 Support the Mission

Help Sarah Ingledue open Ray’s Respite Care—a dream for medically fragile youth.

💗 GoFundMe Link: https://www.gofundme.com/f/join-rays-respite-care-mission

📣 Call to Action: let your legislators know you want to be compensated for caring for you child

➡️ Subscribe, rate & review this podcast so others can find it

➡️ Share this episode with fellow parents, educators, advocates, and policymakers

➡️ Visit specialedrising.com to learn about parent coaching, advocacy resources, and more

📍 Hashtags for Social Sharing:

#SpecialEdRising #PayFamilyCaregivers #DisabilityJustice #MedicaidMatters #CaregiverRights #Purge47 #SupportNotSilence #NoParentLeftBehind #InclusionNotExclusion

🎧 Closing Message: “If you’re a parent caught in the middle of these policy shifts—please know you’re not alone. This is just the beginning of the fight, and together, we’ll keep rising.”