\u201cThere is a difference between what [Newsom] is trying to project as the resistance or the antidote to Trump and the modern agenda, versus what’s in his [proposed] state budget,\u201d Julia Feinberg said.<\/span>Jackson Tammariello\/Zuma<\/span><\/p>\n<\/div>\n Wheelchair user Julia Feinberg<\/span>, who has spinal muscular atrophy,<\/a> is very aware that she will need more assistance as she ages in Oakland. She lives independently thanks to the 600 hours of help she gets each month to have someone assist with daily tasks, like getting out of bed, grocery shopping, and preparing meals. <\/p>\n If Gov. Gavin Newsom (D-Calif.) gets his way, Feinberg risks losing the care that allows her to live an independent life. In-home support services, known in California as IHSS, is a program that pays home aides or loved ones to help people with disabilities with daily tasks. Active since 1983, the program is funded by federal and state Medicaid funds. In practice, it\u2019s a win-win for consumers and governments: disabled people get to live in their communities at a fraction of the price<\/a> it would cost for the state to house them in nursing homes or hospitals. As of March 2026, there were over 900,000 disabled people and aging adult<\/a>s who are authorized to receive home care through the program.<\/p>\n California\u2019s disabled people are now caught in the middle of what is essentially a schoolyard fight between Newsom and Donald Trump. As Newsom continues to cast himself as Trump\u2019s most formidable Democratic opponent, as of Wednesday, Trump\u2019s federal government is threatening to withhold over a billion dollars worth of Medicaid reimbursements<\/a> amid baseless claims of fraud. Newsom\u2019s proposed solution puts hundreds of thousands of disabled people at risk of losing access to the country\u2019s largest and most accessible in-home support program.<\/p>\n \u201cThere\u2019s just no way that this state truly lacks the revenue to ensure that the needs of the most vulnerable Californians are met.\u201d<\/p>\n<\/blockquote>\n<\/figure>\n Newsom wants to change how the program is funded. Under his proposed plan, first introduced in January, if someone like Feinberg needs an increase in hours for the support they need, the county would have to cover more of the cost. Many counties can\u2019t afford the cost. Newsom also proposes cutting a backup provider program, which could leave disabled people in peril if their home aid gets sick.<\/p>\n Every state in America is scrambling to figure out <\/a>how they are going to address draconian Medicaid cuts<\/a> passed by Republicans at the federal level last year. It doesn\u2019t help that home and community-based services are optional across the country under Medicaid, leaving the over 8 million <\/a>disabled people and older adults currently benefiting from the program across the United States in a dangerous bind (all states offer some form <\/a>of Medicaid home care).<\/p>\n Newsom has tried to cast himself as one of Trump\u2019s biggest foils. \u201cPeople are rolling over,\u201d Newsom said at the <\/a>World Economic Forum\u00a0in January about leaders acquiescing to Trump. \u201cI should have brought a bunch of kneepads for all the world leaders.\u201d<\/p>\n But advocates say that far from being a hero, Newsom is still part of the problem. <\/p>\n \u201cThere is a difference between what [Newsom] is trying to project as the resistance or the antidote to Trump and the modern agenda, versus what\u2019s in his [proposed] state budget,\u201d Feinberg, who volunteers with LTSS4ALL Coalition<\/a>, told me. \u201cIt\u2019s really scary to know that as I age\u2026and my needs increase, my hours will not with it.\u201d <\/p>\n Trump himself, surprisingly, has not spent time much publicly complaining about home and community-based services. That would be up to HHS Secretary Robert F. Kennedy Jr. <\/a>and CMS head Dr. Mehmet Oz<\/a>, who claim, without evidence, that the program is rife with fraud.<\/p>\n \u201cWe\u2019ve seen in Minneapolis with raids on Somali-run child care centers, and also was used back in the 90s to dismantle our public welfare program.\u201d\u00a0<\/p>\n<\/blockquote>\n<\/figure>\n \u201cThis rhetoric is not just harmful and problematic, it\u2019s also dangerous and could lead to impacts for programs that absolutely need public funding,\u201d Lindsay Imai Hong, the California director of Hand in Hand: The Domestic Employers Network<\/a>, told me. \u201cWe\u2019ve seen in Minneapolis with raids on Somali-run child care centers, and also was used back in the 90s to dismantle our public welfare program.\u201d\u00a0<\/p>\n Time is running out. Democrats in California\u2019s State Senate and Assembly are in budget negotiations with Newsom. State Senate Democrats unveiled a plan<\/a> strongly opposing cuts to IHSS in mid-April. In a revised budget in mid-May, Newsom did not budge on IHSS changes. They have until the end of June to reach an agreement. <\/p>\n In a statement to me, California Senate President Monique L\u00edmon said that \u201climiting IHSS would likely force low-income seniors into more expensive housing situations\u201d and overall, the IHSS program is \u201cethical, dignified, and more cost-effective option for seniors, people with disabilities, and caregivers.\u201d<\/p>\n California\u2019s program is in Trump\u2019s crosshairs because it\u2019s one of the most accessible in the country. Over half a million people are on home and community-based services waiting lists across the United States, according to research from KFF, though there is no wait list in California. <\/p>\n Sabrina Epstein, a policy analyst at Disability Rights California<\/a>, pointed to the absence of a waiting list for people who qualify. \u201c[IHSS] offers a lot of flexibility regarding who you can hire to be your caregiver, including family caregivers or caregivers from an agency,\u201d said Epstein, \u201cand it serves people of all ages in California, which is a really incredible benefit.\u201d\u00a0<\/p>\n The program in itself is not perfect\u2014<\/a>consumers often do not get the number of hours they actually need, and workers, who are directly paid by the government<\/a>, are underpaid. Patrice Strahan is paid around 31 hours a week to help clients, including an aging Black woman with cerebral palsy and, unofficially for, her adult disabled son. In Alameda County where Strahan works, IHSS workers make $21.60 an hour. Strahan finds joy in this care work and feels grateful for her job and the connections she has with the people she assists. If her clients have to go to the emergency room, Strahan will work overtime\u2013and without pay.\u00a0<\/p>\n \u201cIt\u2019s four in the morning. I\u2019m not on the clock anymore,\u201d Strahan told me. \u201c[Emergencies] happen frequently enough that it\u2019s a regular expectation of the job.\u201d\u00a0<\/p>\n Strahan also told me that it frustrates her how much disabled people, especially low-income disabled people, are expected to settle. \u201cThey are kind of conditioned to accept crumbs,\u201d Strahan told me.\u00a0<\/p>\n Even though Newsom himself was vocally <\/a>against federal Medicaid cuts last year, calling them \u201ccruel, costly, and a significant encroachment on states\u2019 rights\u201d, his proposed changes threaten to become a political liability, according to Jack Pitney, a political scientist at Claremont McKenna College, who told me that Newsom \u201cwould have to defend his record\u201d on this topic if he runs for President.<\/p>\n Newsom, however, has not been scot-free when it comes to attacking IHSS. Last year, he proposed devastating cuts <\/a>to the program, such as limiting the hours IHSS providers could work, which was halted. California, under a Newsom proposal, restricted certain immigrants<\/a> from being able to get Medicaid, which means that they cannot qualify for IHSS.\u00a0<\/p>\n Several sources I spoke with find it absurd that California has not already created a source of more revenue for Medicaid. Californians are currently debating a wealth tax, known as the Billionaire\u2019s Tax, which could be one potential solution, to the Medicaid funding crisis, but Newsom has notably spoken against<\/a> it, labeling it a fear of his and saying he has \u201cwarned against it.\u201d Meanwhile, Newsom\u2019s potential successor, billionaire Tom Steyer, has spoken in favor of a wealth tax<\/a>).\u00a0<\/p>\n Other blue states are exploring different solutions. In Michigan, Gov. Gretchen Whitmer proposed<\/a> raising taxes for digital ads, nicotine products, and gambling to raise more funds for Medicaid.<\/p>\n \u201cWe hear that California has one of the five largest economies in the whole world,\u201d Strahan told me. \u201cThere\u2019s just no way that this state truly lacks the revenue to ensure that the needs of the most vulnerable Californians are met.\u201d\u00a0<\/p>\n Now, California disability and care advocates are fighting in Sacramento and across the state. Feinberg would truly wish to be doing something else with her time.\u00a0\u201cI\u2019m just exhausted having to fight every year,\u201d Feinberg said.<\/p>\n<\/p><\/div>\n\n
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