Out of the dozens of issues that make up the world of disability policy and politics, education may be the most frustrating, and at the same time the most important.
One of the proudest achievements of the disability rights movement is the stunning change in education of kids with disabilities. In a little under 50 years, we have gone from a situation where most disabled students simply had no legal right to a public education — and were widely excluded from schools with no recourse at all — to a legal right and nearly universal expectation that all kids with any disability will receive a public education in a completely or mostly mainstream environment. It’s an undeniable improvement.
The Individuals with Disabilities Education Act, generally referred to as IDEA, makes the right to a “free, appropriate education” for children and youth with disabilities Federal law, and outlines detailed roles and rights for students, their parents, teachers, and schools. It also calls for each student who needs one to have an Individualized Education Plan, or IEP, that may include a variety of services, supports, and tools to make each student’s education as equal and effective as possible. And it emphasizes the importance of providing all of this in “the most integrated setting appropriate” for each child. This is often more loosely interpreted, than it should be, but it still gives the force of law to the idea that no disabled child should be segregated from the general school community without a very good and unavoidable reason, and certainly not for the school’s convenience or general comfort.
IDEA is a vindication, both for justice and for sound social policy. And yet, it is far from perfect, and far even from being consistently followed. For one thing, it is underfunded, and always has been. Federal funds were supposed to cover 40% of the cost of special education in schools, but it has never come close. In 2017 federal funds only covered 14.6% of the cost.
Meanwhile, education of disabled students is still riven with controversy, resentment, resistance, and distrust. Public education remains not just underfunded, but inconsistently managed as well. It continually falls short of its mission, and too often fails to offer disabled students meaningful preparation for successful adult life.
Candidates for President and other major offices have some idea that this a problem worth addressing. But their solutions tend to be the simplest available. Some call for “fully funding IDEA” and leave it at that, while others tout charter schools, vouchers, and other private options in a pitch to parents who are fed up with public education and just want out.
Is this all candidates have to offer? What else should today’s candidates support in order to continue the long-term improvement of education for disabled kids?
I asked education advocacy professionals, parent advocates, and disabled adults who have been disabled students about the education issues that concern them most, and what they would like to hear candidates talk about. Here is some of what they each felt was most important:
Maggie Moroff, Special Education Policy Coordinator at Advocates for Children of New York
• Schools still need to be more physically accessible, and students need access to technology that can help them adapt and learn.
• There needs to be more focus on literacy, using methods that are “built around the 5 pillars of reading instruction — specifically including phonics instruction.”
• Special Education is meant to deliver not just a bare minimum, but support sufficient for every student to “make progress” in their education. This is how the Supreme Court has interpreted the Individuals with Disabilities Education Act.
• We need better data collection and transparency, so everyone can determine accurately how schools are performing in their mandate to teach students with disabilities.
• It’s important to fight the tendency for the needs of disabled students to be viewed as competing against non-disabled students.
Katy Neas, Executive Vice President, American Physical Therapy Association
• Emphasis on early education, particularly children from infancy to age 5, to “prepare these children to be ready for success in kindergarten. “The return on investment … could be profound.”
• Treat children with disabilities first as students … “Special education services are part of public education,” not some kind of special extra. This means continuing to raise the bar and expect all children, to the extent they are able, to “master the same curriculum as their non-disabled peers.”
• It’s important to recognize and support the fact that children have a wide range and variety of disabilities, and all of them are entitled to an education. This includes children with physical disabilities, intellectual and developmental disabilities, autism, learning disabilities, and mental health issues.
• Parents want their children with disabilities to learn alongside their non-disabled peers in non-segregated schools and classes. But they also want their children treated decently and given an effective education. When mainstream public schools fail in this, parents will sometimes turn to private and / or segregated options. Above all, “they just want their kid to be served.”
• IDEA needs to be fully funded, but “funding alone is not the answer.” We must continue to work against what President George W. Bush called the “tyranny of low expectations.”
David Johns, Executive Director, National Black Justice Coalition
• It is vital to recognize the barriers faced by disabled, black, LGBTQ, and other multiply marginalized students as overlapping and inseparable, suggesting a much broader effort to make schools more genuinely inclusive on all fronts. Much as today’s model of public schools was originally designed to exclude Black students and to marginalize “ethnic minorities” and other non-conforming students, schools originally excluded or segregated students with disabilities. It is only relatively recently that the effort to make schools truly inclusive got going in a serious way. And in many ways, we are still in the early stages of this project.
• IDEA is due for reauthorization, and it should be reviewed with eye toward equity using data collected during Obama Administration on Black, disabled, multiply marginalized students, especially around discipline and mishandling of the social and economic effects of racism in the school environment.
• Emphasis on investing in early education, particularly Head Start and early Head Start, and “access to high quality early care and education.”
• We need to invest in supporting educators and improving teacher training. The Education Department, colleges and universities that prepare new teachers, and Congress itself all have roles in improving training so all teachers and support staff are better prepared to teach all kids. This includes students with disabilities, and those who are marginalized in other ways too — by race, gender, gender identity, sexual orientation, and economic status.
• The Covid-19 crisis and its challenges underscores an idea many have had in the past — that the Individualized Education Plan, which was originally designed for students with disabilities, should be used for every student, disabled or not.
Marilyn Muller, mother of a dyslexic child, and a founder of the Twitter-based advocacy campaign #Moms4FAPE
• She reiterates the focus on literacy, and the widespread failure of schools to ensure students with learning disabilities in particular learn to read as much and as effectively as possible. Too many schools adhere to outdated and inflexible teaching methods that marginalize and hamper too many disabled students’ progress.
• Towards this end, IDEA must be fully funded, “and enforced.” Too many disabled students are denied their rights to a “free, appropriate public education,” known in education advocacy circles as FAPE, which is the core guarantee of IDEA. While IDEA sets this out as a general principle, execution happens one student at at time, with many people and conflicting forces to complicate things, and little practical mechanism to ensure that IDEA rights and principles are consistently followed.
• She asserts that “justice can only be ensured if there’s an independent agency” to enforce IDEA. School districts alone, as they are presently organized and funded, can’t or won’t do it. “Currently, there’s a conflict of interest where the school districts are tasked with both identifying disability AND paying for/providing all services.” This is the key conflict of interest parent advocates struggle with on a daily basis.
Elizabeth Picciuto, a parent of a medically complex child
• Public schools lack medical and physical support for disabled students who have self-care needs. “As we’ve seen, most schools don’t have nurses anymore. How can we improve what’s available to medically vulnerable kids?”
• Public education policy must also deal with the challenge of charter schools. While some parents see them as a potential savior for disabled students in failing public schools, and a few may specialize in serving disabled students, others find ways to all but exclude disabled students. “If charter schools are more widely implemented, how can we ensure that they comply with IDEA to the same degree that regular public schools do? Right now, they technically have to comply with IDEA, but it’s implemented differently. I worry that more charter schools will result in more de facto segregation of disabled kids.”
Kerima Cevik, disabled Afro Latinx mother of a non-speaking autistic teen
• The way schools are funded, and the way they manage funds, too often takes advantage of disabled students and shortchanged them. “Funding is allocated and absorbed into the general school budget. So the actual amount of funding supposedly earmarked for the individual student is rarely used to directly benefit said pupil.
• Too often, the quality of a disabled student’s education depends on how hard their parents are able to fight for it. Equal education access becomes more a function of certain parents’ “power and societal privilege” than legal rights under laws like IDEA and the Americans with Disabilities Act. And in any case, parents in general face a “power disparity” that weakens their ability, and that of the students themselves, to advocate for a better, more equitable education.
• The needs of autistic and intellectually / developmentally disabled children are still not being met, not just in public schools, but in later opportunities for higher education. Colleges and universities should offer more opportunities for lifelong learning, which in turn is “a critical step to autonomy” later in life.
(For a more in-depth look at Kerima Cevik’s views on autism, race, and education, read this post on her blog: #AutisticWhileBlack: Against The Miseducation of M. Cevik)
Dominick Evans, disabled filmmaker, scholar, and Twitch streamer
• Like many disabled people, Dominic objects to the term “special” education and referring to “special needs” rather than disabilities, saying simply that it’s “gross.” “Special needs” terminology is meant to be progressive and non-stigmatizing. But a great many disabled people find it a condescending euphemism for “disability” and “disabled.” This may not seem important alongside more concrete policy matters, but these terms set a tone for the entire “special education” ecosystem, and signifies how it fundamentally misunderstands and mishandles how actual disabled people experience disability.
• Dominic calls for ending separate, self-contained, disability-only classes and schools. “Students don’t need to be secluded, especially all day. We need to have more integration wherever possible, because disabled students deserve the right to be amongst their peers.”
• Physical and emotional abuse are also severe and prevalent problems. “I also want to make sure that there are no schools that are allowed to seclude, restrain, or otherwise harm disabled children.”
Cal Montgomery, disabled disability rights activist
• Cal also believes it is important not to lose sight of the ongoing effort to reduce disability segregation in schools. Students with disabilities still do better when they are in “mainstream classes with adequate supports.”
• Cal emphasizes that education policy must reject use of certain therapies, like Applied Behavioral Analysis, which are intended to reduce certain disabilities, like autism, but that students and adults with these disabilities say are traumatic, abusive, and focused more on behavioral control and superficial normalization than on meaningful skills.
• Disabled students are also similarly harmed and traumatized by disciplinary methods that include physical restraint and seclusion. They need to be eliminated, and this should be made explicit in education policy.
Vilissa Thompson, LMSW, social worker and activist
• It is vitally important for candidates to describe how they would protect the rights of disabled students, “especially those of color.”
• The Covid-19 pandemic poses even more difficult challenges to disabled students’ right to an education. It is also creating situations where disabled students are unfairly punished for failures tied to lack of the supports they need.
• Vilissa cites the recent story of Grace, a Black student with Attention Deficit / Hyperactivity disorder who was put in juvenile detention for not doing her online homework. “The story of Grace from Michigan is an example of what can occur for our disabled students who are punished and not supported in this newness thrusted upon them.”
Cara Liebowitz, disabled disability rights and education advocate
• Cara echoes the call for full funding of IDEA, which is the key to virtually any improvements or changes in approach. Specifically, she cites the need for more and better information for parents on disability itself. “I think, unfortunately, many parents just don’t have a lot of resources, and they’re mostly getting guidance from medical professionals, who are going to be the first people a parent encounters when their child is diagnosed with a disability.” Parents need to hear from other disabled people about what life with disabilities is really like, and what is and isn’t truly important to work on with disabled children, beyond medical treatments and therapies.
• Therapies in schools can be helpful, but should focus on practical uses that empower disabled students. “I would not be here, typing this … without a very savvy occupational therapist who recognized early on that since handwriting causes me a lot of fatigue and pain, I was going to need to learn to type sooner rather than later.”
• Cara agrees that teacher training is still in dire need of improvement and updates. “Teacher certification programs are some of the most ableist things I’ve ever seen. They’re horribly outdated, frequently rely on harmful teaching tools like simulations, and generally assume an ‘us vs. them’ approach.”
This is quite an array of concerns and ideas. However, a few themes are fairly easy to identify:
1. IDEA should be fully funded. The most meaningful solutions and initiatives for improvement will need more funding, and it is counterproductive to force disabled students to rely so much on local school budgets for the quality of their education and accommodations.
2. Schools performance and decision-making with disabled students need to be transparent and scrutinized by a more independent process. Parents in particular have great difficulty trusting schools and the educational system as a whole to supervise itself, and this hampers nearly all efforts at reform. Some kind of independent watchdog could help a lot.
3. Disability issues in education cannot and should not be separated from the issues faced by other marginalized students. And in any case, a great many disabled students must also contend with racism, homophobia, poverty, and other types of prejudice and marginalization.
4. The teaching profession needs to be updated on disability issues and best practices, to prevent the persistence of outdated ableist assumptions, end harmful and traumatizing practices, and redirect efforts towards preparing disabled students for the kinds of bright and independent lives disabled adults are already living.
Candidates can’t make these things happen on their own. But they can spur the kind of progress we need.