多年来，7岁的以色列·索利斯一直无法与周围的世界进行交流。由于患有自闭症且无法用语言表达自己的需求，每当别人无法理解他的需求时，他就会通过咬自己或抓自己的方式来发泄沮丧情绪。
For years, 7-year-old Israel Solis couldn’t communicate with the world around him. Born with autism and nonverbal, he would bite and scratch himself in frustration when someone couldn’t understand his needs.
（ ·索利斯一直无法与周围的世界进行交流。由于患有自闭症且无法用语言表达自己的需求，每当别人无法理解他的需求时，他就会通过咬自己或抓自己的方式来发泄沮丧情绪。通过一项由政府资助的康复项目，他终于找到了表达自己意愿的方式：他学会了使用一种图片交流系统，从而能够将自己的想法和需求传达给他人。
SASHA DRAEGER-MAZER/The Texas Tribune For years, 7-year-old Israel Solis couldn’t communicate with the world around him. Born with autism and nonverbal, he would bite and scratch himself in frustration when someone couldn’t understand his needs. Therapy through a state-subsidized program gave him a voice: using a picture system he’s learned from his providers in Houston, he’s now able to convey his desires.
然而，由于州政府预算的削减，德克萨斯州打算取消这项资助计划。在向立法机构提交的2028-2029财年预算提案中，德克萨斯州卫生与公共服务委员会（Texas Health and Human Services Commission, HHSC）提议彻底终止对“儿童自闭症项目”（Children’s Autism Program, CAP）的资助，这一决定令相关倡导者、服务提供者以及家长们感到震惊。
But Texas wants to eliminate the state program, which allows some families to pay nothing for services, because of state budget cuts. In its budget request to the Legislature for the 2028-2029 biennium the Texas Health and Human Services Commission (HHSC) proposed eliminating funding for the Children’s Autism Program (CAP) entirely, stunning advocates, providers and parents.
“如果这些帮助渠道真的被完全切断，我会感到无比绝望，不知道该如何获得任何帮助……”以色列的母亲伊丽莎白·索利斯说道。她的另一个儿子也在休斯顿大学-克利尔莱克分校（University of Houston-Clear Lake）的自闭症与发展障碍中心接受免费治疗服务。
“If the doors just completely close to access that at all, you just feel like it’s all caving in on you, like ‘how am I going to get some help?’” said Israel’s mother Elizabeth Solis, who has another son who obtains services through a CAP-funded program at the University of Houston-Clear Lake’s Center for Autism and Developmental Disabilities she pays nothing for their services.
该项目始于2008年，目前与德克萨斯州的16家服务提供机构合作，根据家庭收入和保险覆盖情况，为自闭症儿童提供低成本的应用行为分析（Applied Behavior Analysis, ABA）治疗服务。根据倡导者的观点，ABA疗法是治疗自闭症的“黄金标准”，符合条件的儿童在整个生命周期内最多可接受720小时的ABA治疗。
CAP, which started in 2008, contracts with 16 providers across Texas to provide focused applied behavior analysis (ABA) therapy to autistic children at a reduced cost based on their families’ incomes and insurance coverage. Children are eligible for up to 720 hours of ABA therapy, which advocates consider the gold standard for autism treatment, over their lifetime.
在过去两年中，该州为这项计划投入了1370万美元；今年该计划还得到了进一步扩展——将适用对象扩大到21岁以下的儿童，并取消了每年服务时数的限制。在2026财年，该州的自闭症援助计划为583名儿童提供了治疗服务，但承包商表示，全州仍有至少1000名儿童处于等待名单中。
Over the last two years, the state spent $13.7 million on the program, and this year even expanded the program, extending eligibility to those up to 21 years old and removing a cap on yearly hours. In fiscal year 2026, the state autism program funded treatment for 583 children, but contractors report there are at least 1,000 more children on waitlists statewide.
“我们非常震惊，因为原本应该有相关预算记录的地方竟然什么都没有，完全是一片空白，”德克萨斯州自闭症协会的执行主任杰奎·贝内斯坦特（Jacquie Benestante）说。“我们一直都在为争取资金而努力，但这项计划竟然被直接取消，实在令人难以接受。”
“We were really shocked to see nothing, and it’s just blank where the line item should be,” said Jacquie Benestante, executive director of the Autism Society of Texas. “We’re used to having to fight for funding, but to actually have a program just slashed and canceled is pretty shocking.”
今年7月，州长格雷格·阿博特（Greg Abbott）、副州长丹·帕特里克（Dan Patrick）以及众议院议长达斯汀·伯罗斯（Dustin Burrows）要求各州政府机构、上诉法院和大学在接下来的两年内削减3%的开支。当被问及为何州卫生与公共服务委员会（HHSC）会决定取消这项计划时，官员们援引了该委员会的预算削减说明，称其“优先削减了对服务对象影响最小的项目，并尽量减少对联邦资金的占用”。
In July, Gov. Greg Abbott, Lt. Gov. Dan Patrick and House Speaker Dustin Burrows directed state agencies, appellate courts and universities to cut spending by 3% in the next biennium. In response to questions about why HHSC chose to eliminate the program, officials pointed to HHSC’s 3% budget reduction summary which says the agency “focused reductions on the lowest direct service impact to clients and minimizing impacts to federal funding.”
然而，在HHSC提交的相关预算提案中，官员们明确承认了自闭症治疗服务的迫切需求：“该州对这类服务的需求远远超过了合格服务提供者的数量，尤其是在农村地区。虽然目前私人和公共保险都为相关治疗服务提供了资金支持，但并非所有地区都能找到合适的医疗服务提供者。”HHSC表示，如果立法机构同意取消这项计划，相关服务仍会持续提供至2027年8月底。
But, in HHSC’s budget request proposing to axe the program, officials explicitly acknowledged the acute need for autism therapy. “The demand for services exceeds the availability of qualified providers especially in rural parts of the state,” per the request. “While private and public insurance now provide coverage for treatment services there are often not providers available in all parts of the state.”
德克萨斯州的许多公共项目都是依靠联邦政府的配套资金来运作的。残疾权利组织（Disability Rights Texas）的高级政策专家杰夫·米勒（Jeff Miller）指出，由于“CAP”计划完全由州政府自行资助，因此这项计划似乎成为了一种既能削减开支又不会影响联邦资金的“理想选择”。
If the Legislature agrees to eliminate the program, children would still receive services through the end of August 2027, HHSC said. Many of Texas’ public programs are funded with federally matched dollars.
与 Medicaid 对 ABA 疗法（应用行为分析疗法）的覆盖范围相关的复杂问题也可能是导致这一困境的部分原因。2022 年，Medicaid 开始为 20 岁及以下的人群提供 ABA 疗法的相关费用补贴，这使得该州的自闭症援助计划显得有些多余（即：这些新政策实际上削弱了原有援助计划的作用）。然而，德克萨斯州残疾人联盟（Coalition of Texans with Disabilities）的倡导负责人 Jolene Pohl 表示，仅依赖 Medicaid 仍然会让许多患者无法获得 ABA 疗法。
Jeff Miller, a senior policy specialist at Disability Rights Texas, said CAP, as a solely state-funded program, may have seemed like an easy way to cut costs without endangering federal funding. Complexities around Medicaid coverage for ABA therapy may also be partly to blame. In 2022, Medicaid benefits started covering ABA therapy for people 20 years old and younger making the state’s autism program appear redundant. But relying solely on Medicaid could still leave many without access to ABA therapy, said Jolene Pohl, advocacy director for the Coalition of Texans with Disabilities.
首先，这些 Medicaid 补贴并不适用于没有医疗保险或使用自费保险计划的家庭，因为这些保险计划通常不要求覆盖 ABA 疗法的相关费用。其次，尽管 Medicaid 提供了新的补贴政策，但患者能否真正获得 ABA 疗法仍充满不确定性：由于报销比例较低，很少有医疗服务提供者愿意接受 Medicaid 患者。Pohl 解释说，CAP（一种特定的援助计划）为那些无法通过 Medicaid 获得帮助的家庭提供了另一种获得 ABA 疗法的途径。
First, those Medicaid benefits don’t apply to families without insurance or who are on self-funded insurance plans, which aren’t required to cover ABA therapy. Second, Medicaid, despite the new benefits, is far from a guarantee for accessing ABA therapy: due to low reimbursement rates, it’s difficult to find providers willing to take Medicaid clients. CAP is an avenue for families that fall through these gaps to still access ABA therapy, Pohl explained.
“增加资金投入、帮助这些孩子尽快摆脱等待名单并让他们获得所需的服务才是更合理的做法，”Pohl 说，“因为如果我们不能及时为这些符合条件的家庭提供所需的服务，最终会给州政府带来更大的经济负担。”单亲母亲 Emily Pena 表示，尽管她 5 岁的女儿 Lila Rodriguez 已经参加了 Medicaid，但寻找合适的医疗服务提供者仍然非常困难。最终，她还是在休斯顿大学-克利尔莱克分校（University of Houston-Clear Lake）的自闭症治疗中心找到了一个由 CAP 资助的 ABA 疗法项目。
“It would make more sense to increase the funding and get those kids off the waitlist and give them the services that they need,” Pohl said, “because eventually it’s going to cost the state more if we don’t provide the services to these eligible families in a timely manner.”Single mother Emily Pena said that even though her daughter Lila Rodriguez, 5, is on Medicaid, finding a provider still proved difficult. She eventually discovered a CAP-funded program at the University of Houston-Clear Lake’s autism center.
莉拉在初次被诊断出患有自闭症时无法说话，上幼儿园前也遇到了很多学习困难。应用行为分析（ABA）疗法通过正面强化来鼓励孩子表现出期望的行为。例如，当莉拉需要停止使用平板电脑时，治疗师会用一些有趣的东西（比如黏液）来转移她的注意力，让她将这种“过渡”行为与积极的后果联系起来。佩纳表示，莉拉每周会参加两到三次这种治疗，直到今年6月完成整个治疗计划；这个治疗项目帮助她度过了“相对正常的童年”。
Lila was nonverbal when she was first diagnosed and struggled in pre-K. ABA therapy works by using positive reinforcement to encourage desired behaviors. For instance, to help address Lila’s meltdowns when tablet time ended, therapists used something fun, like slime, to redirect her so that she associated the transition with a positive outcome. Pena said the center’s program, which Lila attended two or three times a week until she graduated in June, allowed her to enjoy “somewhat of a normal childhood.”
根据约翰霍普金斯大学的研究人员的数据，过去20年里，被诊断为自闭症谱系障碍的儿童数量增加了300%。随着自闭症病例的增多，ABA疗法的需求也随之大幅上升。在德克萨斯州，参与CAP（Children’s Autism Program）项目的等待时间长达数年，而非数周。
Over the past 20 years, the number of children diagnosed with autism spectrum disorder has risen 300% according to researchers at Johns Hopkins University. With autism diagnoses on the rise, ABA therapy is in high demand. In Texas, wait times for CAP-partnered programs are measured in years, not weeks.
自CAP项目启动以来，休斯顿大学-克莱尔莱克分校的自闭症治疗中心就一直与该州政府合作，为自闭症儿童提供ABA疗法。该中心主任多萝西娅·莱尔曼表示，去年该中心为41个家庭提供了治疗服务，目前还有200个家庭在等待名单上。她认为取消CAP项目的提议“非常糟糕”：“对大多数家庭来说，根本没有其他选择，这意味着他们将完全失去这些治疗服务。”
The University of Houston-Clear Lake’s autism center has worked with the state to offer ABA therapy since CAP launched. Last year, the center’s CAP-affiliated programs provided therapy for 41 families, the center’s director, Dorothea Lerman, said, and there’s another 200 families on the waitlist. She called the proposal to eliminate CAP “devastating.”“There is no other option for the majority of them, and so they would basically have no services,” Lerman said.
莱尔曼强调：“这会严重影响整个家庭的生活质量——比如他们能否带孩子去杂货店或餐厅，能否在公立学校更好地生活和学习。”她指出，该中心目前没有接受Medicaid或保险费用的基础设施；如果取消CAP项目的提议得以实施，该中心必须在2027年8月之前找到新的资金来源，否则其所有与CAP相关的项目都将被迫关闭。
“It would greatly impact the quality of the whole family’s life – the ability to take your child to the grocery store or out to a restaurant, to function better and learn better in public school.”Her center doesn’t have the infrastructure to take Medicaid or insurance, Lerman said. If the proposed CAP elimination goes into effect, the center would have until August 2027 to find an alternate source of funding before its CAP-affiliated programs shut down.
该提议也让海莉·约翰逊感到困惑和沮丧。她的儿子米卡·奥尔蒂斯在18个月大时被诊断出患有自闭症；如今3岁，他曾参加大学CAP资助的项目数月，目前正在等待重新加入该项目的名单上。约翰逊表示，ABA疗法改善了他的沟通能力，并减轻了他的崩溃和攻击性行为。
The proposal has also left Hailey Johnson baffled and frustrated. Her son Micah Ortiz was diagnosed with autism at 18 months; now 3 years old, he attended one of the university’s CAP-funded programs for several months and is on the waitlist to return to the program. Johnson said that ABA therapy improved his communication skills and mitigated his meltdowns and aggressive behavior.
“自闭症儿童的家庭本来就已经很艰难……我们本来就没有那么多资源，”约翰逊说。“这是一个非常好的项目，而他们现在要把它拿走。”本文最初由《得州论坛报》发表，并通过与美联社的合作伙伴关系进行分发。
“It’s already hard enough on families with kids with autism … We don’t have that many resources as it is,” Johnson said. “This was a really great one, and they’re going to take that away.”This story was originally published by The Texas Tribune and distributed through a partnership with The Associated Press.