Disability Emergency: How to Care Without Transportation or Treatment
The lack of funding for key sectors for the development of people with disabilities impacts their caregivers. The stories.
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BUENOS AIRES, Argentina. Lorena Díaz travels Monday through Friday with her 11-year-old son Thiago to his special needs school on a bus covered by her health insurance. But for months, her insurance company hasn't paid for services for people with disabilities, including transportation. Thiago, who has autism spectrum disorder, has already stopped receiving two of his treatments: occupational therapy and speech therapy. The psychologist told his mother that if she doesn't get paid by August 20, she'll have to stop receiving treatment as well. The bus driver who takes them to school told her the same thing.
They live in a house in Las Talitas (Tucumán, Argentina) with Thiago's father. Although they separated six years ago, they must continue living together because neither can afford the rent. He is a bricklayer, and she cleans houses three times a week. "It's what I can do because I don't have time to care for Thiago," she told Presentes. Her son found a place at the Private Institute of Education and Adaptation (INPEA) in San Miguel de Tucumán. He had previously attended other schools, where he suffered greatly and where he didn't want to go, until his mother took him to this institution, which will accommodate his diagnosis. "On the first day he came back, he remembered the names of his classmates. Before, he had never remembered a single name. He loves going to school."
Due to the lack of two of his therapies, Lorena finds Thiago "quite unregulated" and self-harming. If school transportation were to stop, they would have to take two buses each way, and this brings other inconveniences: "He can't travel standing up because he's afraid, he doesn't tolerate waiting for the bus for long, and the commute to and from school is peak hours."
Lorena's concern about how to sustain a dignified life for her son is shared by other families. For years, they have claimed that disability is a state of emergency in the country. But the situation today is critical: professionals haven't been paid for months, they receive the same salaries they received in December, people with disabilities are forgoing treatment, and many children don't have transportation to get to school.
In an attempt to improve the situation, and thanks to the support of organizations, on June 10, the Senate approved the bill declaring a disability emergency until December 2027. Two months later, on August 4, Milei vetoed entire bill. This Wednesday, the National Congress will debate the presidential veto. Organizations called for a vigil starting Tuesday night and a mobilization throughout the day.
In this emergency context, how do families care for people with disabilities? Presentes spoke with some of them.
“Many kids stopped going to school because they no longer have transportation.”
Lautaro is an 8-year-old boy with visual impairments. He attends elementary school in the mornings and a special school in the afternoons. His father and mother share the care of him and his two siblings: she works during the day and he works at night. But this year, Lautaro lost the transportation that previously guaranteed his schooling. This meant his father had to sleep two hours a night to take him, and then another two hours in the afternoon. In total, he rests four hours a day.
“This reduces our quality of life. The cost of living for a family with disabilities is significantly higher than for one without. And my son still goes to school, but many children stopped going because they no longer have the transportation they used to have. And they have one less meal a day because they don't go to school,” Laura Alcaide, the mother of Lautaro, a 35-year-old woman who is also visually impaired, told this agency.
“There are many children who are being left without school transportation,” said Ana María Bogarín, principal of Colegio Nuevo Día, a psychopedagogue and graduate in Educational Sciences with 30 years of experience in special education. “I have students who travel more than an hour on school buses to get to class. If they miss their transportation or if parents start being asked for financial compensation, there is a gap again. This adds to their own life stories: it's a community at social risk because it's below the poverty line.”
Among the problems she sees most frequently among families in her educational community are parents losing their jobs, social security systems not accepting people with social security contributions, difficulties attending parent-teacher conferences, and the loss of outpatient treatment due to inability to pay for it.
Being retired and caring
María Elena Isaac is 68 years old and retired. She was widowed in 2001, when her daughter Celeste was seven years old. For fifteen years until her retirement, she dedicated herself exclusively to her work and caring for her daughter, who has autism. “The good thing is that she can talk. Even though she doesn't have conventional language, she expresses herself a lot,” she shared with Presentes . “What she never learned was reading and writing. The psychiatrist told me the other day that she feels like she's three years old. That's why, when she was little, they didn't want to accept her into any institution. It took a lot of effort for them to accept her.”
For María Elena, finding a place where Celeste could attend full-time was vital. This allowed her to work, run some errands, or go to the supermarket while she was away from home. She hasn't taken the bus, gone to bakeries, the supermarket, or gone on vacation with her daughter for years due to the complications that come with caring for her in these situations. Currently, Celeste is 31 years old and attends the CISAM Foundation Day Center in Villa Martelli, with guaranteed transportation. There, she has four therapists: psychomotor therapists, physical education teachers, and music therapists.
“If I didn't have an institution and transportation, it would be very complicated today, practically impossible. I'm retired, and while I don't earn the minimum wage, I spend roughly double what I earn each month. I'm lucky to have savings. Celeste doesn't receive a disability pension, nor do I receive a pension for my husband because he died young. I have my sister and my nephews, but on a day-to-day basis, we're alone together,” she said.
Lucio, a 25-year-old man with autism spectrum disorder and schizophrenia, goes to the same institution, but part-time. “Thank God we can cover part of Lucio's treatment. But the situation has gotten much worse. It's hard to get coverage, or they've limited the number of days he can be treated. Before, a boy came to the home three times a week, but now we've had to restrict the number of visits because it was so difficult to manage. At least in my experience, this is the worst time of my son's life,” Andrea Fabiana Acosta, a 57-year-old mother of Lucio and his twin sister, Valentina, told this agency. “Both Lucio and his classmates need to keep going to the day center.”
The power of networks
Laura, Lautaro's mother, is a sports journalist and proofreader at the National Braille and Talking Book . When she walks down the street with her children or meets someone new, they often say, "It's good that you can see because that way you'll be your mom's guide."
“They treat us as if we, the disabled, couldn't care for them. That's not the case. The person who has to provide care, in this case, is the adult. And they are raised with the perspective that they are the ones who have to care for the adult,” she considered. In this regard, she spoke about the infantilization that exists in relation to people with disabilities and “eternal childhood”: “Historically, even adults, have been considered children.”
In addition to caring for her children and working, Laura is an activist with Orgullo Disca (Disabled Pride) and the Asamblea de Discas en Lucha (Assembly of Disabled People in Struggle). She has also been present in Congress on other occasions to demand her rights, both for the consideration of the Emergency Disability Law and for other occasions. On several occasions, there was repression. “My blind son doesn't want me to go to the demonstrations. He's scared. I try not to tell him because it makes him extremely anxious not knowing what situation we're in. As much as I try to avoid it, he knows very well the situation we're living in,” she said.
Caring in a network
Families value networks and spaces for mutual listening as a way to share experiences and collectively foster care. Lorena Díaz, in Tucumán, participates in the "Enlazadas" group, created in November 2021. Around 50 women meet twice a month with a volunteer psychologist to discuss their experiences caring for people with disabilities in a space provided to them free of charge.
“It's a spectacular group. It's helped me a lot personally. We all say we speak the same language because no one looks at us strangely; we all go through the same things. We also have a WhatsApp group where we talk every day, always supporting each other. We're friends, and so are our children. We often go out together to squares to hang out,” Lorena said.
In a critical context, collective action, activism, and organization become essential to demand the rights of people with disabilities.
“Despite this crisis we find ourselves in, people with disabilities, their families, and providers, are united in a tireless fight for the enactment of the Disability Emergency Law,” said therapeutic companion and social psychologist Rocío Librandi, a member of the Organization of Precarious Health and Education Providers and the Tribuna Disca Struggle Front . “It’s a law that doesn’t solve all of our problems, but it gives us a much-needed respite to continue fighting for all of our demands. This is a shared struggle. They will not defeat us: we are a collective with enormous strength.”
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