KRISTEN HWANG/CalMatters 朱莉娅·费因伯格感觉自己仿佛活在《土拨鼠之日》的阴暗版本里。连续第二年,加州立法者让老年人和残疾人更难获得州资助的医疗福利。
KRISTEN HWANG/CalMatters Julia Feinberg feels like she’s living in a sinister version of Groundhog Day. For the second year in a row California lawmakers have made it tougher for seniors and people with disabilities to qualify for state-funded health benefits.
现年37岁、患有退行性神经肌肉疾病的费因伯格表示,没有Medi-Cal(加州医疗补助计划),她就会被迫住进养老院,而不是在奥克兰作为一名治疗师生活和工作。
Feinberg, 37, who has a degenerative neuromuscular disorder, said without Medi-Cal she would be confined to a nursing home rather than living and working as a therapist in Oakland.
“我们不得不一次又一次、一次又一次地进行同样的斗争,”费因伯格说。她需要一辆电动轮椅,每天约19小时的护理,这些都由Medi-Cal承保。
“We keep having to have the same fight over and over and over again,” Feinberg said. She requires a power wheelchair and about 19 hours of caregiving each day, which Medi-Cal covers.
在经历了十年的扩张后,加州正在削减Medi-Cal,这是联邦和州层面大范围削减的一部分。专家估计,未来四年将有超过220万加州人因此失去保险,使该州的无保险率翻倍。
California is cutting Medi-Cal after a decade of expansion, part of sweeping federal and state cuts that experts estimate will kick more than 2.2 million Californians off coverage in the next four years, doubling the state’s uninsured rate.
最新的削减发生在6月,当时州领导人批准了一项预算,将低收入老年人和残疾人获得Medi-Cal资格的资产上限降至2.1万美元,自2027年7月起生效。费因伯格积攒了一些应急储蓄,将不得不花掉约1万美元,以使资产低于这一上限。
The latest cut came in June, when state leaders approved a budget that will lower the asset limit for low-income seniors and people with disabilities to $21,000 to qualify for Medi-Cal, starting in July 2027. Feinberg, who has built up emergency savings, will have to spend about $10,000 to get under the cap.
2024年,该州取消了长期存在的Medi-Cal资产限制,但此后立法者一直在逐步侵蚀这一政策。今年年初,州领导人恢复了13万美元的资产限制,而6月的预算进一步将其降低。
In 2024, the state eliminated longstanding Medi-Cal asset limits, but since then lawmakers have chipped away at that policy. At the beginning of this year, state leaders reinstated an asset limit of $130,000, and the June budget lowered it further.
主要住宅和一辆车不计入新限制,但65岁及以上的老年人以及残疾人不得拥有第二套住房或第二辆车,其储蓄账户、某些退休账户、人寿保险单甚至墓地的资产也不得超过2.1万美元。他们仍须满足Medi-Cal的收入资格限制,单身人士每月约1800美元。倡导者表示,这些规定不公平地针对老年人和残疾人。
A primary residence and one vehicle are exempt from the new limit, but people 65 and older as well as those with disabilities cannot own a second home or car, and they can’t have more than $21,000 in savings accounts, certain retirement accounts, life insurance policies or even burial plots . They must still meet Medi-Cal income eligibility limits of about $1,800 a month for a single person. Advocates say the rules unfairly target older people and those with disabilities.
“残疾人的生活成本真的非常高,”现年44岁的伊丽莎贝特·盖坎布鲁说。和费恩伯格一样,她患有脊髓性肌萎缩症,需要使用电动轮椅,并依靠每日护理。
“It’s really expensive to be disabled,” said Elizabette Guéçamburu, 44, who like Feinberg has spinal muscular atrophy and requires a power wheelchair as well as daily caregiving.
盖坎布鲁说,她正在攒钱买一辆二手无障碍面包车,价格约7.5万美元。加装坡道、改造浴室等家庭无障碍改造也要花费数万美元,这些费用Medi-Cal(加州医疗补助计划)均不报销。盖坎布鲁表示,如果没有积蓄,这些开销根本无法承担。
Guéçamburu said she’s saving up for a used wheelchair-accessible van, which costs about $75,000. Home modifications such as adding ramps and making bathrooms accessible also cost tens of thousands of dollars, none of which are covered by Medi-Cal. Guéçamburu said those expenses would be impossible to afford if she couldn’t save.
盖坎布鲁住在帕特森的家族农场,种植核桃、杏仁和苜蓿。她兼任农场会计。2024年,医生诊断出她父亲患有前列腺癌,无法再充当她的照护者。同年,加州取消了针对残疾人和老年人的资产限制——盖坎布鲁激动落泪,首次有资格获得Medi-Cal。“时机简直是天赐良机,”她说。
Guéçamburu lives on her family’s farm in Patterson where they grow walnuts, almonds and alfalfa. She works part time as the farm’s bookkeeper. In 2024, doctors diagnosed Guéçamburu’s father with prostate cancer, and he could no longer act as her caregiver. The same year, California eliminated asset limits for people with disabilities and seniors — Guéçamburu cried, able to qualify for Medi-Cal for the first time. “The timing was a godsend,” she said.
如今,年迈的父亲若失去Medi-Cal将无法照顾她,盖坎布鲁正为外祖母留给她的那笔钱犯愁。她很可能不得不把钱存入由家人控制的特殊需求信托,放弃财务独立。她还让家族把她从百年农场的继承人名单中划去。私人居家护理每月花费数千美元,让中低收入者难以自掏腰包承担。
Now, her aging father is unable to take care of her should she lose Medi-Cal, and Guéçamburu is struggling to figure out what to do with money left to her by her grandmother. She’ll likely have to put it into a special needs trust controlled by a family member and give up financial independence. She also had her family strike her from inheriting any portion of their 100-year-old farm. Private home care costs thousands of dollars a month , making it hard for lower- and middle-income people to pay for it out-of-pocket.
“我不得不放弃家族传承,只为换取医疗保障和正常生活的能力,”盖坎布鲁说。
“I have to surrender our legacy just to have medical security and have the ability to live my life,” Guéçamburu said.
加州州长加文·纽森在2024年取消了加州医疗补助计划的资产要求,此前老年人和残疾人权益倡导者为此奔走呼吁多年。在取消该要求前的声明中,纽森表示,他为其政府做出的“大胆投资”以“保护毕生积蓄和住房”感到自豪。但两年后,面对120亿美元的预算缺口,纽森提议恢复原有的2000美元资产上限,理由是参保人数比先前预估的多出一倍多。立法机构反对该提议,并妥协将上限定在目前较高的13万美元,并将于明年7月再次降至2.1万美元。
Gov. Gavin Newsom eliminated Medi-Cal asset requirements in 2024 after a yearslong campaign by senior and disability rights advocates. In a statement before the elimination , Newsom said he was proud of the “bold investments” his administration was making to “protect life savings and homes.”But two years later, faced with a $12 billion budget shortfall, Newsom proposed reinstating the former $2,000 limit, arguing that more than twice as many people enrolled as previously estimated. The Legislature opposed that proposal and compromised at the current higher limit of $130,000, lowering it again to $21,000 starting next July.
倡导组织“Hand In Hand”加州主任林赛·伊迈·洪表示,组织者正寄希望于下一任州长推动变革。该组织支持需要护理的家庭。
Lindsay Imai Hong, California director for Hand In Hand, an advocacy group supporting families that need caregiving, said organizers are looking to the next governor for change.
“我们非常希望看到资产审查永远不再被摆上砧板,”伊迈·洪说。
“We would love to see the asset test permanently taken off of the chopping block,” Imai Hong said.
共和党州长候选人史蒂夫·希尔顿在致CalMatters的声明中表示,他反对资产上限。他批评州政府将其他医疗补助福利扩展至超出其负担能力的范围,包括为无合法身份的移民提供保障。
Republican gubernatorial candidate Steve Hilton said in a statement to CalMatters that he opposes asset limits. He criticized the state for extending other Medi-Cal benefits beyond what it could afford, including coverage for immigrants without legal status.
“老年人和残疾人不应因为存下一些钱而失去保障。他们做的是负责任的事。为什么要因此惩罚他们?”他说。
“Seniors and people with disabilities shouldn’t lose their coverage because they’ve managed to save some money. They’ve done the responsible thing. Why punish them for it?” he said.
民主党州长候选人、领跑者哈维尔·贝塞拉未就资产上限政策回答具体问题,但其竞选发言人将责任归咎于特朗普政府的联邦削减“挤压”了加州的医疗补助计划。
Democratic gubernatorial candidate and front-runner Xavier Becerra did not answer specific questions about the asset limit policy, but a campaign spokesperson blamed the Trump administration’s federal cuts for “squeezing” California’s Medi-Cal program.
发言人乔纳森·安德兰德表示,贝塞拉将“专注于保护医疗服务的可及性,并要求节省措施真实、可衡量且可持续”。在竞选途中,贝塞拉自称加州下一任“医疗州长”,并曾提出增税以扭转医疗补助削减,但尚未发布详细的医疗政策计划。
Becerra will be “focused on protecting access to care and demand savings that are real, measurable and sustainable,” spokesperson Johnathan Underland said. On the campaign trail, Becerra has called himself California’s next “healthcare governor” and has previously floated raising taxes to reverse Medi-Cal cuts, but has not released detailed health policy plans .
圣马特奥县法律援助协会的律师卡米尔·阮(Camille Nguyen)表示,大多数难以将资产保持在限额以下的人几乎没有财务保障。
Camille Nguyen, an attorney with the Legal Aid Society of San Mateo County, said most people who struggle to stay under the limit have little financial security.
“他们所有的毕生积蓄都是现金存款,而不是房产。那就是他们的养老钱。那是他们指望用来度过余生的数额,”阮说。
“They have all of their life savings in cash savings instead of a house. That’s their retirement. That is the amount they are expecting to live off of for the rest of their life,” Nguyen said.
州政府数据显示,当加利福尼亚州恢复13万美元限额时,约有600人失去了加州医疗补助(Medi-Cal)资格。倡导者预计,在更低的限额下将有更多人失去加州医疗补助资格,但在立法者批准2.1万美元限额之前,州政府从未发布预算估算。如果州政府恢复低得多的2000美元限额,财政部估计,在两年内将有6.2万名老年人和残疾人失去加州医疗补助资格。
State data shows about 600 people lost Medi-Cal when California reinstated the $130,000 limit. Advocates expect many more to lose Medi-Cal at the lower limit, but the state never released budget estimates before lawmakers approved the $21,000 limit. If the state reinstated the much lower $2,000 limit, the Department of Finance estimated 62,000 seniors and people with disabilities would lose Medi-Cal over two years.
费恩伯格(Feinberg)表示,失去加州医疗补助的前景尤其令人恐惧,因为她还将失去一项特殊残疾项目的资格,该项目支付额外的护理工时,且有长达数年的等待名单。护理人员帮助费恩伯格起床、穿衣和准备餐食。
Feinberg said the prospect of losing Medi-Cal is especially scary because she would also lose access to a special disability program that pays for extra caregiving hours and has a multiyear waitlist. Caregivers help Feinberg get in and out of bed, dress and prepare her meals.
费恩伯格说,在2024年取消限额之前,她每天都要查看银行账户,确保余额足够低。当时,费恩伯格是一名研究生,收入不高。现在,作为一名持证治疗师,费恩伯格已经能够存下一些钱。
Before the limit was erased in 2024, Feinberg said she checked her bank account every day to make sure the balance was low. At the time, Feinberg was a graduate student and did not earn very much money. Now, as a licensed therapist Feinberg has been able to squirrel away some money.
“我不想花掉那些钱。我想留着养老,也许将来买房,”费恩伯格说。“无法拥有养老积蓄的前景让人非常不安。”盖康布鲁(Guéçamburu)表示,她对州政府将残疾人服务视为可牺牲的项目感到愤怒和沮丧。
“I don’t want to spend down that money. I want to save that for retirement, maybe buying a house in the future,” Feinberg said. “The prospect of not being able to have a nest egg is very unsettling.”Guéçamburu said she’s angry and frustrated that the state views services for people with disabilities as expendable.
“每个立法周期都要为自己的存在辩护,这让人精疲力竭,”她说。
“It’s exhausting to have to justify your existence every legislative cycle,” she said.