Alarm over US policy shifts threatening segregation for disabled people

A series of recent policy shifts in the United States has sparked alarm among disability advocates, who warn of a worrying regression in the rights of disabled individuals to live and learn alongside their non-disabled peers. These changes, they argue, threaten to push people with disabilities back to the margins of society, undoing decades of progress.

Last month, the Education Department announced its intention to transfer oversight of special education to the Department of Health and Human Services, led by Robert F. Kennedy Jr. Mr Kennedy’s past comments regarding the limitations of disabilities, including autism, have drawn sharp criticism from both advocates and lawmakers.

Concurrently, following a White House initiative to address homelessness, the Department of Justice issued new guidance that significantly lowers the threshold for institutionalising any person with a disability.

Taken together, these actions signal a potential return to a reality where disabled individuals are segregated from mainstream society, according to advocacy groups. Selene Almazan, legal director for the Council of Parent Attorneys and Advocates, described the situation as "a direct, frontal assault on the rights of people with disabilities to live their lives the way that people who are nondisabled live their lives." She added, "I can't imagine that as a country, that would be something that we would agree we should go back to."

Since the 1960s, a succession of legislation and court rulings has progressively expanded support and protections, enabling people with disabilities to attend school with non-disabled peers and to live and work within their communities. Prior to these advancements, individuals with mental illnesses or developmental and intellectual disabilities were largely confined to institutions.

Advocates have long challenged the "medical model" of disability, which views an individual’s disability as a defect requiring a cure. Instead, they champion a "social model," where differences are accommodated and supported, fostering environments where people with and without disabilities learn and work together.

Families and advocates have expressed concern that moving special education to a health department signifies a return to the medical model. They have also voiced anger over Mr Kennedy’s attempts to link vaccines to autism, despite decades of research refuting any such connection, and his characterisation of autism as a debilitating disease.

Mr Kennedy’s comments last year, suggesting that children with autism would never write a poem, pay taxes, or hold a job, raised serious questions about his suitability to oversee an agency tasked with helping students develop these very skills. He later clarified that he was referring to individuals with "severe autism" or those who are nonverbal.

Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, commented: "Many of the things he said autistic people will never do, (special education) is in charge of making sure students with disabilities have the opportunity to do. Will he execute that faithfully, or does he consider disabled students a lost cause until we find some medical cure?"

In 1999, the Supreme Court ruled that segregating disabled people who could otherwise live in their community with appropriate support constituted a form of discrimination. The landmark Olmstead v. L.C. decision mandated that government agencies provide disability services in the most integrated setting possible, encompassing mainstream schools, homes, and workplaces.

However, a memo issued by the Department of Justice's Office of Legal Counsel in June effectively overturned that guidance. It argued that neither the Americans with Disabilities Act nor Section 504, two pivotal disability rights laws, obliges states to provide services in the most mainstream setting. While this memo does not alter existing law, it indicates how federal agencies might interpret and enforce civil rights issues in this area, potentially emboldening states or school districts to reduce support for disabled individuals in integrated environments.

The White House has already acted on a similar philosophy. Last year, Donald Trump issued an executive order on homelessness that endorsed civil commitment, allowing courts to mandate involuntary hospitalisation or treatment programmes. Mr Trump directed the HHS to reduce barriers to institutionalising people with mental illnesses.

In its memo, the Justice Department acknowledged that its interpretation of the Supreme Court's Olmstead decision is "out of step" with common understanding. The DOJ noted that if a state were to begin providing services in institutional settings, legal challenges would likely ensue.

Claudia Center, legal director at Disability Rights Education and Defense Fund, stated that the Trump administration's actions align with a worldview that suggests the government has no obligation to support people with disabilities. "It's dark, and it's awful," Center said. "And I think it's contrary to the majority view in our country. ... It's out of touch with where our society is."

These developments have created a profound sense of uncertainty for students with disabilities and their families. Lindsey Althaus, a disability rights advocate, highlights the crucial role of home and community-based services in northwest Ohio for her family. Her 12-year-old son, Whitman, has autism and apraxia, a neurological disorder affecting speech and motor skills. With proper support, Whitman has spent much of his school day in inclusive classrooms.

Through a Medicaid waiver programme, Ms Althaus employs her mother to care for Whitman in her absence, enabling him to engage with the community alongside his grandmother while Ms Althaus and her husband work.

Under the Justice Department's new interpretation of Olmstead, states would face fewer obligations to fund and support such programmes. Furthermore, Mr Kennedy, in testimony to lawmakers earlier this year, criticised similar programmes, citing concerns about potential fraud.

"We want to be able to have him in the community," Ms Althaus said. "It's just starting to feel like Whitman's not going to be welcome anymore. We're going back to this: You're either perfect, or you're not in the light."

For many disabled students, schools are the primary source of support services and integration with their peers. Magda Nakassis’s 8-year-old son, who is autistic and nonverbal, had a preschool experience largely defined by exclusion before starting public school in Maryland.

In school, Ms Nakassis found teachers and staff who understood her son’s needs and encouraged her to stop apologising for them. A programme at his school, "Fantastic Friends," educates mainstream fifth graders about autism, and they spend recesses with children in the autism programme. Ms Nakassis noted that there is a waiting list every year to become a Fantastic Friend.

Ms Nakassis expressed her distress at how autism, in particular, has become politicised. She emphasised that every child is entitled to a public education, and special education addresses the fact that some children have differences requiring additional support.

Regardless of his diagnosis, his right to an education is not a medical issue, she asserted, but rather a question of equity and access in a society that frequently marginalises disabled people. "There are lots of kids like him out there, and I sometimes wonder, ‘what did we use to do?’" Ms Nakassis said. "I can't believe it was better."