In The Politics of Autism, I discuss the congressional role in the issue.I have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:
The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.
From the article:
Despite bipartisan support on Capitol Hill, the [Combating Autism Act of 2006] did arouse some controversy within the autism community. Self-advocates said that it focused too little on services and gave practically no attention to the needs of autistic adults. They considered autism part of their identity and took offense at the notion that it was an enemy that “kidnapped” children. The Autism Self-Advocacy Network (ASAN) criticized the law’s title as “hurtful and stigmatizing,” and it launched a hashtag campaign, #StopCombatingMe. The self-advocates’ efforts had an effect: the 2014 reauthorization addressed some of their substantive concerns and gave the law a different name: the Autism Collaboration, Accountability, Research, Education, and Support Act, or the Autism CARES Act. Congressional Republicans did not complain that the title change was “politically correct.” They supported the reauthorization, which passed by voice vote in the House and unanimous consent in the Senate.
The story was similar with the next reauthorization. A press release put it this way: “U.S. Senators Mike Enzi, R-Wyo., and Bob Menendez, D-N.J., senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and throughout their lifetime.” Donald Trump tweeted out a photo showing his Sharpie signature on the bill, saying: “Today, I was proud to sign the Autism CARES Bill! We support research for Americans with Autism and their families. You are not forgotten, we are fighting for you!” Just as he was acknowledging this achievement of the “shadow Congress,” the House was taking the first steps that would lead to his impeachment.
...Despite notable exceptions, disability politics has mainly remained in the “shadow Congress,” where calm deliberation and bipartisanship are the norm. But “bipartisan” does not always mean “good.” Even when bills go through the normal legislative process without shouting and name-calling, the results may disappoint many stakeholders.
Such disappointment spans the range of programs affecting people with disabilities – especially IDEA. At least through 2023, as noted earlier, Congress has never approved “full funding” of the law: 40 percent of the average per pupil expenditure for special education. In many places, parents complain of inadequate support for their children. For decades, lawmakers have proposed legislation to meet the funding level that the 1975 bill had promised. One obvious problem is cost. In 2021, the National Education Association estimated that the funding gap stood at about $36 billion. And even meeting that mark might not be enough. Recent research suggests that the distribution of federal special education funds has become more inequitable across states. Accordingly, Congress would need to consider funding formulas, not just aggregate spending.