![\"Michele](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2026\/05\/260511-michele-gregory-medicaid-vl-2-433p-389417.jpg\")
Michele Gregory and her husband work as full-time caregivers for their 31-year-old son, Nick.Courtesy Michele Gregory<\/p>\nNow the wage she receives from the state is set to drop by more than 25%, down to $23.69 an hour.<\/p>\n
\u201cI can\u2019t absorb that,\u201d Gonce said. \u201cHow am I supposed to keep paying my bills?\u201d<\/p>\n
Advocates say paying relatives as caregivers doesn\u2019t just help families \u2014 it can save the government money.<\/p>\n
Michele Gregory and her husband both care full time for their 31-year-old son, Nick, who has a rare and severe form of epilepsy and profound developmental disabilities, requiring continuous supervision. After they pulled him out of a day program and took over caregiving around 2017 at their home on Maryland\u2019s Eastern Shore, Gregory said, Nick\u2019s health improved and his hospitalizations dropped from about four times a year to once every 12 to 18 months.<\/p>\n
\u201cThat saved Medicaid somewhere between $300,000 to $400,000 a year,\u201d she said.<\/p>\n
Michele Gregory and her husband work as full-time caregivers for their 31-year-old son, Nick.Courtesy Michele Gregory<\/p>\n
With Maryland\u2019s new wage cuts and a 60-hour cap on the total number of caregiving hours a family can be reimbursed for each week, she and her husband expect their annual income to fall by more than $80,000.<\/p>\n
For now, they plan to tap a retirement account to stay afloat while Gregory looks for remote work \u2014 whatever it takes to avoid sending their son back into a group setting.<\/p>\n
\u201cI\u2019ve never been under the illusion that we\u2019re ever going to get to retire,\u201d Gregory said. \u201cWhen you have a disabled child, you never retire from that job.\u201d<\/p>\n
Families across the country say they\u2019re facing similar decisions.<\/p>\n
Casey Barrett, a single father in Colorado, got his nursing assistant license and wrapped his life around caring for his 14-year-old daughter, Olivia, who has a rare neurological disorder requiring round-the-clock care \u2014 from tube feeding and diaper changes to constant monitoring for seizures and respiratory distress.<\/p>\n
Under Colorado\u2019s Medicaid home-care program, which has been one of the nation\u2019s most generous, Barrett logs up to 112 hours a week as his daughter\u2019s paid caregiver. After lawmakers approved a budget this spring that caps the number of hours<\/a> a single caregiver can be paid each week at 56, his income could drop from about $162,000 a year to roughly $70,000 \u2014 a reduction that Barrett says will make it difficult to continue paying his mortgage.<\/p>\n Colorado officials have presented the changes<\/a> \u2014 part of broader Medicaid cuts to close a $1.5 billion shortfall \u2014 as necessary to \u201cmanage rising costs, promote fairness, and ensure that caregivers and members alike are supported.\u201d<\/p>\n Barrett has seen the criticism from those questioning whether the government should be paying parents to care for their own children and understands why his six-figure income might raise eyebrows. But he notes that his daughter qualifies under Medicaid for up to 155 hours of care each week \u2014 work that must be done, whether it\u2019s by him or someone else.<\/p>\n Given the shortage of home-care workers, sky-high turnover rates and the complexities of his daughter\u2019s care, Barrett doesn\u2019t think he\u2019ll be able to find someone to pick up the remaining hours, which means it\u2019ll be left to him.<\/p>\n He doubts critics understand what that actually entails. A typical day includes lifting and repositioning his daughter, bathing her, managing her medical treatments and monitoring her vitals \u2014 labor that doesn\u2019t stop when she goes to sleep.<\/p>\n \u201cI would welcome anybody to come try,\u201d he said. \u201cThere\u2019s no clock-in or clock-out. This is a continuous, nonstop job.\u201d<\/p>\n Anna Keyzer, a Nebraska mother paid through Medicaid to care for her 21-year-old son, Simon \u2014 who is blind, tube-fed and prone to self-harming behaviors \u2014 said changes proposed late last year in her state would have forced her family into unthinkable choices.<\/p>\n \u201cI can\u2019t just let Simon die, and so then I was like, \u2018We\u2019re gonna have to sell our house,\u2019\u201d Keyzer said. \u201cI don\u2019t know what we would do.\u201d<\/p>\n Nebraska lawmakers ultimately backed off the plan<\/a> to drastically limit paid caregiver hours<\/a> after an outcry from families. But Keyzer said she fears the reprieve may be temporary, with sweeping federal Medicaid reductions rippling down to states in the coming years.<\/p>\n \u201cWe feel like it\u2019s life or death,\u201d she said. \u201cWe\u2019re prepared to keep fighting, because we know what\u2019s at stake.\u201d<\/p>\n Work that never ends<\/p>\n On a recent Monday morning, Gonce flipped on the light in Jason\u2019s bedroom. He sat up and stretched his arms.<\/p>\n \u201cYou were sleeping good, weren\u2019t you?\u201d she said softly.<\/p>\n","protected":false},"excerpt":{"rendered":"Now the wage she receives from the state is set to drop by more than 25%, down to…\n","protected":false},"author":2,"featured_media":647333,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[59],"tags":[97,252,253],"class_list":["post-647332","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health-care","tag-health","tag-health-care","tag-healthcare"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/647332","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=647332"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/647332\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/647333"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=647332"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=647332"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=647332"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}![\"Casey](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2026\/05\/260511-casey-barrett-medicaid-vl-429p-49d6ea.jpg\")
Casey Barrett, right, who works as a full-time caregiver for his 14-year-old daughter, Olivia, worries he won’t be able to continue paying his mortgage following Medicaid cuts in Colorado.Courtesy Casey Barrett<\/p>\n![\"Anna](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2026\/05\/260511-anna-keyzer-medicaid-vl-436p-0b4f79.jpg\")
Anna Keyzer, bottom right, says her income would have been slashed by nearly $70,000 under proposed changes to Nebraska’s Medicaid program. The loss would have made it difficult to continue caring full-time for her 21-year-old son, Simon.Courtesy Anna Keyzer<\/p>\n