Customized Education Models May Hold the Key to Student Success

An old-fashioned gold key with teeth that read "success."

In the first half of the 1970s, nearly 30 regional court cases regarding issues of educational inclusion culminated in a new federal law, the Education for All Handicapped Children Act, known today as the Individuals with Disabilities Education Act (IDEA). Under IDEA, all disabled children have the right to a free public education in the least restrictive environment, regardless of the severity of their disability.

Yet four decades later, parents still have to fight on behalf of their disabled children who are being excluded from classrooms. I recently wrote for Rooted in Rights about two families who turned to homeschooling when their local public schools weren’t meeting their needs. My friend Tucker Mashue and his father, Dennis, took homeschooling a step further, creating their own vocational education with the help of an online charter school.

In 8th grade, Tucker had been thriving. Dennis had arranged a work-study opportunity for him at a local nature center, and he was receiving an education balanced between academics and vocational training.

But when 10th grade rolled around, the district autism expert declared Tucker ineligible for general education and a transition program “until he learns to function appropriately in a real-world setting.” Dennis knew that his son could function just fine in real-world settings even if he was very unhappy inside a public school building. The school had a responsibility to educate Tucker but was not providing suitable opportunities for him.

So, Tucker and Dennis decided to reshape his education, seeking out online academics and forming a small business for Tucker. Dennis explained the business would have two main goals: “Create a learning platform to develop work/business experience, and design the business to scale up to provide Tuck with a sustainable, meaningful livelihood, should he choose that path.”

The model the Mashue family created for Tucker’s education was borne out of responding to the way his school tried to edge out of their responsibility for helping Tucker prepare for his future. Their unique educational model has built in preparation for transitioning from school to the world of work.

Tucker and his father toured the country to promote the business, sell products, and visit retail stores to arrange deals with merchants. Along the way, the pair educated others about autism and education issues at places including schools, universities, libraries. “He loves to present to large crowds (over 100!),” Dennis said, “despite being unreliably verbal. We use a slideshow with captions, but crowds eat him up. He has zero anxiety in front of a crowd!”

And Tucker didn’t just shine at presentations. It turned out that he was great with the business as well. As Dennis shared, “Two of our largest sales were a direct result of his dedication!” On top of demonstrating strong business sense, Tucker continued to excel with his online academic work as well.

Tucker plans to attend university in 2018. The skills he learned from running his own business are just as important for his future success as his great academic grades and test scores. And as a result of Tucker’s and Dennis’s real-world research into combining academic and vocational study with creating and running a business, Appalachian State University in Boone, North Carolina, is now working on creating a similar educational program for disabled students who want to own their own businesses.

The Mashues’ experimental homeschooling model has demonstrated the importance of an education shaped by the student’s needs. High school as a disabled teen can be a difficult experience, and too often, students and their parents are left to form their own solutions despite legislation that protects students’ educational rights. The one-size-fits-all solutions offered by schools that don’t demonstrate respect for all students at all ability levels are negatively impacting children’s futures. Dennis and Tucker recognized this, and found a solution.

Dennis never gave up on Tucker and we must not give up on our school system. We must continue to do everything in our power to ensure that no student is excluded from the education they are guaranteed under law.


Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Disabled People Have the Right to Live Happily Ever After

Close-up of the top of a marriage license form

“The freedom to marry has long been recognized as one of the vital personal rights essential to the orderly pursuit of happiness by free men.” – Chief Justice Earl Warren, Loving v. Virginia, 388 U.S. 1 (1967)

While there is no law prohibiting disabled people from marrying, in practice there are penalties and restrictions that often limit our freedom to enjoy what Chief Justice Warren called one of the “basic civil rights of man.” Disabled people who depend on medical and financial benefits in order to survive and live independently in the community can find that survival at risk if they choose to marry.

Social Security’s marriage rules are complex and some details vary from state to state. When in doubt, check with a lawyer, your local SSA office, and the Social Security Handbook. Someone who receives Social Security Disability Insurance (SSDI) — disability benefits based on their own past work history — will usually get to keep their full benefits because they are not means-based benefits. That means a person will continue to receive SSDI even if they have another source of income, including the shared resources of marriage.

Many disabled people, however, receive Supplemental Security Income (SSI) – benefits for those who have never worked or who have worked but did not accumulate enough work credits to entitle them to enough SSDI to live on that money alone. When a person who receives SSI gets married, they risk losing some or all of their benefits, depending on their spouse’s income. Along with SSI benefits, the disabled person might also lose their Medicaid.

Losing medical coverage can be a literal matter of life or death for many disabled people who could not afford the life-sustaining medical care they need if forced to pay for it out of pocket.

If two people who are both on SSI marry each other, they will lose 25% of their income and 25% of their resource or savings limit. Since SSI already puts an individual below the poverty threshold, losing a quarter of that small amount of money can be enough to sink a household. Additionally, disabled people who receive Childhood Disability Benefit (CDB) – a benefit for those who became disabled before age 22 – stand to lose their benefits if they marry someone who does not receive any Social Security benefits.

While all these penalties do not infringe on a disabled person’s right to marry, they make the consequences of marriage so harsh that only 24% of SSI recipients over age 18 are married, compared to 57% of the general population.

The Special Needs Alliance, an organization of attorneys offering advice on disability and public benefits law, has useful checklists of questions SSI recipients should explore before committing to marriage. While this information is crucial in the short-term, our long-term goal must be reforming the punitive regulations that make marriage impoverishing or life-threatening for disabled people who receive SSI and Medicaid benefits.

Marriage is a basic civil right, as has been demonstrated by the race-based marriage court cases in the 1960s and the gender-based marriage battles today. We must not let disability-based marriage penalties destroy our choices. Disabled people deserve the freedom to secure the legal protections of marriage, build loving families, raise children together, and enjoy everything else that comes with the social and legal institution of marriage.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Ensuring Disabled People Return to Community Living After Natural Disasters

Photo of flooded street surrounded by trees.

As Texans continue to experience the fallout of flooding of historical proportions from Hurricane Harvey, safety is paramount, especially for disabled people, who are particularly vulnerable during natural disasters.

The United Nations recognizes this vulnerability in Article 11 of the Convention on the Rights of Persons with Disabilities (which the United States has signed but not ratified) calling for “all necessary measures to ensure the protection and safety of persons with disabilities” in crisis situations, including natural disasters.

After the dangerous flood waters recede, many disabled people will face ongoing struggles as they are pressured or forced into institutions. The 1999 Olmstead decision guarantees disabled people the right to live independently with support so long as they want to live outside an institution and their treatment needs can be met in the community.

But in the chaos and disruption of a natural disaster like the catastrophic Houston-area flooding, violations of Olmstead are virtually guaranteed.

For instance, people with communication disabilities who already struggle to be understood can have their needs and wishes ignored or overrun. And for people who need physical access, it often goes unnoticed that new accommodations can be added at no extra cost when rebuilding a home after a natural disaster.

In 2005, Hurricane Katrina hit Louisiana, followed by Hurricane Rita, causing similar devastation to that which Houston is experiencing now. The National Council on Disability (NCD) published a study on the impact of Hurricanes Katrina and Rita on the disabled population and found many factors forcing disabled people who had been living in the community to live institutionalized during rebuilding.

NCD profiled a disabled homeowner, Charles, who was able to afford rebuilding but unable to live in his home because there was no infrastructure to support his residency. As such, he was forced to live in an institution because his community could not adequately support and accommodate him.

NCD’s report called for going beyond mere rebuilding to “reshap[ing] the region in a manner that maximizes livability and accessibility for people with disabilities.” This is essentially a call to embrace Universal Design in the urban re-planning forced by natural disasters, so that everyone can continue to live in the community.

As we prepare to face the post-flooding phase of Houston’s natural disaster, we need to be vigilant about human rights violations, whether intentional or incidental. And as rebuilding begins, we must do all in our power to see a more accessible Houston rise from the flood waters.

If you are in need of support, please contact:
Portlight Inclusive Disaster Strategies, a national cross-disability disaster relief organization
Hotline for people with disabilities needing help: (800) 626-4959

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Homeschooling Should Be an Option for Disabled Students, But Not the Only Option

Young female-presenting, Asian-presenting child working on a drawing, with a female-presenting mother-figure sitting behind her, mostly not visible, guiding her hand.

When I was in middle school, I begged my mother to homeschool me. I was struggling with the curriculum — I needed to be more challenged and more accommodated at the same time — and I was being bullied by teachers as well as peers. I was frightened, miserable, and not learning.

I didn’t get homeschooled. My mother was in graduate school and my father worked full-time. There just weren’t the resources to allow me to leave school, no matter how beneficial it would have been for me. At the time, I felt that was really unfair, but these days I’m questioning how fair it is that so many of my friends who are parenting disabled children are forced to homeschool, because school systems are still not adequately meeting the needs of children who are like I was.

Two court cases in 1972 established that disabled children have the same right to a free, public education as all children, but the battle for full inclusion continues today. Around 2 million U.S. students are homeschooled and 15% of their parents cite a physical or mental health issue as the most important reason the family chose to remove their children from the public school system.

I am a huge supporter of homeschooling and want to see it protected as a legal method of education in the United States. At the same time, I can’t help wondering if we are letting schools “off the hook” when we remove disabled children whose needs are not being adequately addressed. I decided to go straight to children themselves for answers to my questions.

Evie, 10, and Luke, 6, who are both Autistic, are exploring their elementary school level education. They’re bright, friendly, wonderful children who love learning but have encountered snags in the education process due to schools not understanding how to educate disabled children.

Luke’s mother makes sure that he has autonomy and agency to make important choices about things such as school. Luke shared that one reason he chose homeschooling was frustration with unpleasant social environments. “The other kids tease me and then lie about it,” Luke said. “It’s lonely without people to play with. I like learning at the library and on my iPad.” Luke’s mother, Anne, added that the school was particularly uncooperative with addressing Luke’s specific needs.

Anne investigated public school but didn’t like how the idea for educating Luke was to pull him out of the classroom for his core academics. “Part of this time is also spent on skills which don’t respect autistic neurology,” she said.

The public school was only using Applied Behavior Analysis (ABA) methods, which Luke rejected as stressful and insulting and Anne rejected as promoting compliance without understanding. “Instead of pulling him out for social skills and compliance based intervention, find meaningful break activities to help cope with sensory overload,” Anne suggested.

“I think we both want the school and others to presume competence,” Anne said. “He knows best what he needs to feel safe and learn.” Luke is now part of a homeschool co-op that he loves, where he spends time with other Autistic kids who understand and relate to him well.

Like Luke, Evie is treated with great respect in her family. “She’s always been in charge of her own education,” her mother, Priscilla, told me. “I’ve just always followed her lead in this area. Kids are smarter than us and usually know what they need more than we do!” But, unlike Luke, Evie started out in a pre-school that honored her creative, inquisitive nature.

Evie’s first school was set up on the Reggio Emilia model, an educational approach from Italy that is student-centered and encourages learning through actively exploring the world. From such a lovely, solid foundation, Evie went on to a public school kindergarten and had a horrible experience.

“Everybody should get the support they need, and the help they need, and that everybody should be treated the same way,” Evie told me. Priscilla added, “My child has the same right to an education as all other children, regardless of her disability. She deserves to be in a learning environment that meets her needs and gives her the best possible chance at learning and growing both academically and socially.”

Kindergarten wasn’t supporting Evie. “The school completely ignored all recommendations given by my daughter’s psychologist and occupational therapist.” Within a few months, Priscilla was homeschooling Evie. This worked great for the whole family for several years, but by third grade Evie was hungry for more social interaction and needed some extra help with educational accommodations.

Priscilla did not want to put Evie back in public school. Fortunately, they looked at a small charter school with a great attitude. Some charter schools are under fire because they reject or discourage disabled students or will not offer accommodation for disability. Evie’s school is the exact opposite and a perfect fit for her. “I get so much support!” Evie told me.

Evie and Luke are both getting their best chance, thanks to loving parents who support their educational needs and honor their choices. But what about other disabled children? Homeschooling must be protected as an option without being viewed as giving public schools or charter schools a free pass when it comes to inclusion and accommodation of disabled students. Every child deserves the best chance possible at life, which means it’s time for every school to live up to the mandate of inclusive education for all.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Paying Disabled Workers Fair Market Wage Isn’t Just Ethical…It’s Economical

A closeup photo of a pile of dirty pennies.

It was a hot summer and I was on the longest road trip of my life when I found the perfect product, something that would keep the heat at bay. It was exactly what I needed and only one small company sold it. That would be the end of a rather ordinary story if it weren’t for the words boldly emblazoned on the company website: “Manufactured locally in partnership with a Missouri Sheltered Workshop.”

“Sheltered workshop” is an increasingly outdated term for what the Department of Labor now calls “work centers.” When the Fair Labor Standards Act of 1938 (FLSA) was passed, special provisions were made, authorizing employers to pay disabled workers less than the established minimum wage — often a token pittance. The certificate that allows an employer to pay below minimum wage is called a 14(c) certificate because the rules for such workplaces are explained in section 14(c) of the FLSA.

There are 90 sheltered workshops in the state of Missouri, employing over 6,000 disabled workers. Nationwide, around nearly 250,000 people work in sheltered work centers that are permitted to pay less than minimum wage.

The system is allegedly set up to help disabled workers transition from sheltered work to the open labor market, but in reality workers end up staying in exploitative labor situations for years or even decades.

There was no way I could buy something that was manufactured in a sheltered workshop without going against everything I hold to be true and ethical and just. So I wrote to the owner, telling her how perfect her product was but expressing my reservations about the method of their manufacture. I needed to know what my money would be supporting if I made the purchase.

I guess I was hoping she would write back about some mythical sheltered workshop where everyone was being paid at least minimum wage and the program was actively working on helping employees transition to supported work in the community. But what she wrote back dashed cold water on that dream:

“We are very proud to be utilizing the services of a local Sheltered Workshop, which by definition means ‘a private non-profit, state, or local government institution that provides employment opportunities for individuals who are developmentally, physically, or mentally impaired, to prepare for gainful work in the general economy.’” she wrote. That would be great if the workers were paid fairly and if the programs really were preparing employees for gainful work in the general economy.

Instead, workers in most sheltered workshops are paid piece rates, a business model so exploitative that laws require employers to make up the difference when piece rate falls below minimum wage…unless the employer holds a 14(c) certificate, in which case it’s legal to pay pocket change for hours of labor. Moreover, sheltered workshops are isolated from the community, which is a violation of civil rights, due to the heightened risk of exploitation in isolated settings. As if all that weren’t outrageous enough, the Government Accountability Office reports only 5% of sheltered workshop employees leave to work in the community.

And yet, far too many people assume that sheltered workshops are ethical and compassionate. The small business owner with whom I was corresponding wrote to me, “what if I were mentally challenged, or my child, to where I could not hold a job in the ‘normal’ workplace? I know I would certainly appreciate the opportunity to be made to feel productive, earning a paycheck would be a bonus.” This woman outright dismissed the value of disabled workers, assuming that making disabled people “feel productive” justifies extremely low wages.

But the pride that comes from feeling useful and productive is not a just substitute for living wages. We are not charity cases! We deserve the same workplace protections as everyone else and equal pay is one of our fundamental civil rights.

It’s likely that the small business owner with whom I was corresponding was justifying her bottom line. “We were thinking we might need to look at China for production…when someone suggested we look into the Sheltered Workshops…We felt it was a win win, keeping the dollars here, keeping them in our own state, and helping the disabled.”

The low-cost production sheltered workshops seem to be offering is just smoke and mirrors. Only 44% of the money that keeps sheltered workshops functioning comes from production contracts and retail sales. Moreover, 46% of funding comes from agencies at all levels of government, primarily from Medicaid funds. Supported community employment costs less than sheltered workshops and the cost goes down over the working life of a community employee but up for sheltered employees. Despite the lower wages paid to 14(c) workers, sheltered labor costs more — costs that are passed along in taxes to small business owners who don’t realize they are losing money.

The state of Vermont closed its last sheltered workshop in 2002 and now Vermont boasts an employment rate for workers with developmental disabilities double that of the nation at large. Average wages for disabled workers in Vermont are more than 50 cents higher than Vermont’s state minimum wage, which itself is higher than the federal minimum wage by $2.75. Vermont is modeling fair disability employment for the rest of the country.

It’s time for everyone to realize the bigger picture. Ethics and economics both agree: paying disabled workers less than minimum wage is bad for everyone. As a society, we agree that exploiting workers is wrong. This ethos should not budge when workers are disabled.

Our communities flourish and our economic base becomes stronger when disabled workers are welcomed into the community, supported, and paid a fair market wage.

“Bottom Dollars,” a Rooted in Rights original documentary that exposes the exploitation of people with disabilities who are paid sub-minimum wage, is now available to rent or purchase.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

How Can Universities Better Support Disabled Students to Graduate?

A group of people, all silhouettes, throw graduation caps in the air in a celebratory fashion. They are backlit by the glow of sunlight.

The Individuals with Disabilities Education Act, Section 504 of the Rehabilitation Act of 1973, and Titles II and III of the Americans with Disabilities Act are all intended to help disabled people successfully receive an education. As a result, far more disabled people are going to and graduating from college. 11% of postsecondary students are disabled — a percentage three times higher than it was 20 years ago — yet we still have a long way to go in the fight for educational equality at the university level.

The six-year graduation rate for all students is 60%, but the percentage is much lower when it comes to disability. For example, it’s only 41% for students with learning disabilities, and 30% for d/Deaf college students. Why are our universities failing to retain and support disabled students through graduation?

“Too many of my disabled students have dropped out,” Dr. Evelyn Chiang, associate professor at UNC-Asheville (UNCA), told me. Many of these students are affected by barriers such as poverty, insufficient educational preparation in primary and secondary school, and a pervasive culture of ableism. However, the biggest issue cited by those I spoke with was the number of students choosing not to disclose disability and seek accommodations.

On a national level, only 1% to 4% of disabled students disclose their disability to their college or university. Why are students choosing to bypass the help they are legally entitled to?

Some students feel like they don’t need accommodations, but Dr. Stephen Kuusisto, senior faculty member at Syracuse University, notes that, “disabled students who don’t identify their needs are often at a very serious disadvantage. […] The work is hard, the demands great, and when students don’t self disclose they often set themselves up for failure.” Other students lack access to the required professional documentation.

“What other group do we require to produce documentation before granting their civil rights?” Ogburn asks.

Amanda Burkhart talked about the lack of support they encountered in the disclosure process, even from their parents. “I felt stranded and broken and completely at fault,” Burkhart told me. “I never reached out for assistance because I didn’t know I could.” Shaun Bryan Ford, who has since returned to school and earned three degrees, was unable to access sufficient accommodation earlier in his academic career and dropped out “due to feelings of isolation and hopelessness having to do with my disability.”

The stigma of a disabled identity holds many students back at from pursuing academic careers. As Chiang pointed out, “We need to work on creating college climates that de-stigmatize disability.”

Students may also choose not to disclose because past disclosure was insufficient, useless, or even harmful. For example, when Nora, a student at a private Christian college, asked her professor for accommodations due to the classes and exams she would miss due to back surgery, that professor demanded she reschedule the surgery. Disability services told her it “wasn’t their job to help with those types of things.”

In our discussions, everyone repeatedly mentioned the importance of strong and visible disability communities on campus, comprised of not just disabled students but also disabled faculty and staff, as an antidote to stigmatization and negative experiences.

Ford credited disabled community for his success when he returned to university with a formal diagnosis. “The way we tend to talk about disability is punitive–it spreads a culture of shame and fear about people knowing you are disabled. If we felt more pride, more of a claiming of disability and our differences, then we would not feel so ashamed of not being like everyone else,” he told me.

Carolyn Ogburn, Coordinator of UNCA’s Office of Academic Accessibility spoke of the university’s strong disability culture: “I’m very proud of this university for being one of the few in the nation to have a Disability Cultural Center.”

Chiang, also very involved in UNCA’s disability culture said, “We need to actively work in order for universities to include disability as a form of diversity. Many universities define diversity in terms of skin color (race/ethnicity), sexual orientation, and gender identity. All of these are important. But these same universities leave out disability regularly. Disability is not automatically included in diversity efforts. It must be.”

Everyone I interviewed also mentioned the difference openly disabled professors can make. “Disabled students need to see disabled mentors at every level of the University, and so do their nondisabled peers,” Ogburn said. Moreover, disabled staff can contribute to the larger conversations surrounding principles of inclusive education. “As a blind professor,” Kuusisto said, “I aim to encourage imaginative thinking when it comes to how we teach, use technology, plan or develop physical space, and celebrate our students and colleagues.” Chiang also underlined the importance of inclusive, accessible education techniques. “I need to present content in an accessible way so that students can learn; I need to make accommodations so that students can demonstrate their learning.”

Reducing disability stigma and increasing accessibility for everyone — not just for those with sufficient privilege to secure official documentation of need — are key to raising retention and graduation rates.

Ogburn reflected, “If I’m doing my job effectively, I’m working my way out of a job every day, because accessibility for all should be the floor of what we expect from our public spaces and institutions, rather than the ceiling.”

We cannot hope for truly equal footing in the world of work until we can resolve discrimination and ableism at every level of education. We must embrace building disability community in academia, encouraging disabled students to take advantage of accommodations, and expanding accessibility in order to grow universities that serve the needs of all.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Why We Cannot Allow the AHCA to Pull Our Lives Out From Under Us

A small section of a blank medicaid application form.

I am Autistic and I have depended on Medicaid for my health care coverage for 23 years now.

During those years, I have watched my coverage expand and shrink, depending on the political climate and the state I was living in at the time. (I have been a resident of Kentucky, Illinois, Minnesota, Idaho, and Florida while receiving Medicaid benefits.) I was sometimes irritated at not being able to get everything I needed but I never felt the cold fear I am experiencing now as I watch Congress working on stripping away healthcare for me and millions of other disabled people who depend on Medicaid to live, thrive, and participate fully in life.

I have lived on SSI benefits for most of my adult life, but I dream of becoming self-supporting. I have been unable to maintain employment, but a few years ago I started my own business as a writer and public speaker.

Every year I draw closer to my goal of financial self-sufficiency. Without health coverage, though, my dream crumbles under its own weight.

An examination of survey data found that in the states accepting the federal funds to expand Medicaid, as offered by the ACA, there was a significant increase in employment among disabled people. Half of those who benefited from Medicaid expansion were disabled workers, but if the AHCA is passed, this expansion will be one of the casualties.

Through Medicaid, I can get vital tests like blood tests and the colonoscopy I had this winter. I can get advice and medication for controlling my diabetes. I can get eye exams and glasses, dental exams, and emergency medical care. Because of Medicaid, I am able to be self-employed and receive healthcare without being financially demolished, reduced to begging for charity to be able to see, chew, or quite literally survive.

Even so, I represent a privileged “tip of the iceberg” when compared to many of my friends who will be forced to return to institutionalization under AHCA. One of the “optional” programs that will be cut is Community First Choice (CFC), an Obamacare initiative to reduce institutionalization of disabled people. My dear friends who have finally escaped grim existences in residential facilities are going to be forced back behind institutional doors, away from the community, isolated from the happy lives they have built with supported independent living, locked away from friends and family.

It is not too late to lobby Congress. The AHCA has not yet gone to the Senate for a vote and likely requires significant revision. If the legislation is revised, it will have to go before the House for a new vote. So it’s not even too late to talk to Representatives about AHCA which passed the House, as currently written, by a very narrow margin.

Fellow Autistic, Ari Ne’eman, who served on the Obama administration National Council on Disability, reminded us of the importance of all disabled people joining together in battle against AHCA when he said, “The disability community is a hand with many fingers but what’s happening right now is that they are all closing together into a fist.”

Let’s raise that powerful fist of community action high and protect our health coverage from an ill-conceived piece of legislation that will hurt so many Americans. We cannot allow the AHCA to pull our lives out from under us.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

New Laws Could Put Access on the Line at State and National Levels

Man in a wheelchair sitting at the bottom of steps

Imagine being Deaf and pregnant but not being able to discuss your concerns with your obstetrician for six months while waiting for your doctor’s office to get an ASL interpreter. Or what about having to wait two months for a local bank to acknowledge a letter you sent them about being unable to get your wheelchair through their narrow doors to apply for a business loan?

Earlier this year, Arizona state legislators voted to make this a reality for their constituents with disabilities. Arizona Senate Bill 1406 is a state level ADA Notification Bill that will allow businesses throughout the state to take a “wait and see” approach to regulations set forth by the Arizonans with Disabilities Act (AzDA), rather than immediately addressing them.

Under S.B. 1406, disabled people who are denied access are required to notify the business owner in writing, being specific about the location and nature of the violation. The complexity of the requirements provides an additional barrier, making it more likely that disabled people will make procedural mistakes or give up entirely. What’s worse, there is no mechanism in place to address business owners who refuse to co-operate or who supply an unworkable plan. “The bill presumes that the plan [provided by the business owner] is adequate,” said Sarah Kader, Staff Attorney for the Arizona Center for Disability Law. “This whole thing is a mess. It feels like just a general hacking away at disability rights.”

But Kader emphasizes the importance of maintaining focus on the bigger picture. “These are long-term fights,” she says, “because the fight for civil rights is a lifelong, generations long battle. And so we did, to some extent, lose here but we get up the next day and keep fighting.”

The fifty states have been called “laboratories of democracy” because changes can be tried out at the state level before making national changes. California passed SB 269 in 2016, giving defendants an 120 day grace period in accessibility suits and Oklahoma is on the verge of passing SB 651, mandating written notification of website violations be submitted 120 days before filing an injunction. Maryland, Texas, and Florida show signs of drafting their own notification bills as well.

Disabled residents in all of these states can still turn to Title III of the ADA to make a federal complaint…for now. However, due in large part to these state-level “experiments,” ADA notifications could soon be mandated throughout the United States.

House Resolution 620, the Americans with Disabilities Act (ADA) Education and Reform Act of 2017, was introduced to the U.S. Senate by Representative Ted Poe (R-TX), and is currently being considered by the Congressional Subcommittee on the Constitution and Civil Justice. The bill threatens to decimate decades of civil rights victories with excessive notification requirements that would strip away our voices, adding barriers to having our civil rights even considered, let alone addressed.

As we dig into the work of preventing H.R. 620 from becoming law, we should look to state-level battles like Arizona’s for inspiration and suggestions on how to approach the fight.

Larry Wanger, the Chairperson of the Arizona Disability Coalition and Executive Director of the Arizona Statewide Independent Living Council, was part of a group of activists and lawyers that fought vehemently against S.B. 1406. He noted that while lawyers and architects are familiar with the ADA, smaller business owners often support legislation like H.R. 620 because they believe that no one is actively providing education about the ADA. In fact, not only are there extensive resources for business owners on the federal ADA website, but also an extensive network of regional ADA centers that work closely with business owners on accessibility issues, offering training sessions, symposiums, and more. The problem is not a lack of resources so much as a general lack of awareness.

As Kader reflected, ‘I think discrimination based on disability, unfortunately, is still totally acceptable in mainstream society. And so they just don’t see it as a civil rights issue.” Wanger adds, ‘There are absolutely people who don’t know [their responsibilities under the ADA]. But when you make it a civil rights issue, you’ve got it.”

Both Kader and Wanger point out that not only will H.R. 620 affect more people, but the waiting periods and notification rules are much worse than S.B. 1406, further eroding the civil rights of disabled people. Wanger suggests advocates call out their legislators, saying, “you’re going to make us the only minority group in this country that you’re willing to legislate our right to exercise our civil rights and require that x, y, and z happen before we can do that, and you wouldn’t do that to any other minority group, so why us?”

Advocates must continue to fight against laws like S.B. 1406 and H.R. 620 that place excessive burdens and lengthy waiting periods between us and our rights to access. Unless we educate our legislators about the harm of notification bills like H.R. 620 and similar state-level legislation, the ADA Title III regulations that protect us from discrimination and access barriers will are bound to become encumbered with unjust obstacles.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Disability Day of Mourning: We Are Not Burdens

A group of people surrounding lit candles at a vigil.

Trigger warning: this post discusses violence against and murder of disabled people.


His name was Marcus Fiesel.

He was a smiling three-year-old boy who loved bubbles, flowers, and Bob the Builder.  Like all children, he deserved to be protected from harm, but his mother was struggling. Her boyfriend was beating her and her home was filthy and infested with fleas. Marcus had mysterious cuts and bruises and when the police brought him home after finding him wandering in traffic, his mother broke down and told the officers that she wasn’t coping. She handed all three of her children over to the state — a heart-breaking act of love meant to give them a life better than she had to offer.

For Marcus, that choice turned out to be deadly.

His mother had been poor, overwhelmed, and struggling, but loved her children so much that she made a mother’s ultimate sacrifice to save them. But the foster family Marcus ended up with was dangerous and unstable and appropriate background checks had never been conducted. Marcus was an energetic Autistic child well known to be “a handful,” but also well loved by those around him. A next-door neighbor had called Marcus, “an awesome little guy.”  His new foster family did not have the patience for his energy and curiosity so they wrapped him in blankets and duct tape and propped him in a closet all weekend. Marcus’ death from overheating and asphyxiation must have been a slow torture.

Marcus would be 14 years old today if he had not been murdered.

His death was my introduction to a gruesome pattern I’ve watched play out again and again over the years since. Marcus was the first Autistic I noticed who was murdered by caregivers, but he was far from being the last. Not a month goes by that I don’t hear of at least one Autistic person being murdered by their parent or caregiver.

GassedDecapitatedShotBludgeonedThrown into the sea or off a bridge or drowned in a creekFed bleach or other poisonsStrangled or suffocatedChained to the bed and left to burn to death or chained to a chair and left to freezeSlashed or stabbed multiple times. Rarely, a would-be victim survives a murder attempt, the most famous being Issy Stapleton whose mother locked her in the car with burning charcoal grills in an attempt to suffocate her.

It’s not just children — disabled adults are killed by their parents or caregivers as well. And it’s not just Autistics — in the last five years, over 400 people with disabilities of all kinds have been killed by their parents.

The Autistic community began by mourning our dead and then, noticing that it is a shared sorrow, joined with the larger disability community in 2012 to mourn all the victims of filicide within our Disabled family.  The Disability Community Day of Mourning calls us to come together to share our grief and anger with vigils every March 1st where the names of the dead are read and speakers call on the world to respect our humanity and protect us in our vulnerability.

Too often, the public chooses to condone the murders of disabled people by empathizing with the murderers, underlining the false notion that we are a burden to our families, chastising others not to judge those parents if we haven’t “walked in their shoes.”

But what of the unfair judgment of the lives of disabled people? Marcus Fiesel was “a handful,” but so is any inquisitive three-year-old child. We are not burdens. We are human beings who deserve a fundamental respect for our humanity. Murdering one’s own child is never excusable.  It is shocking that anyone would ever try to excuse such a heinous act. These vile crimes will continue until society fully awakens to the truth that disability rights are human rights.

How many more will die before the world fully acknowledges our humanity and welcomes us as the valued and valuable members of society we are?

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Autism and Homelessness: The Real Crisis

A pair of hands holding a cardboard cutout of a house

Contrary to much media spin, autism is neither a tragedy nor a looming public health crisis. Autistics have always been here and research over the last decade has shown that while diagnosis has increased over time, the actual percentage prevalence of autism has not risen.1 What is a tragedy is how underserved we are. I am a 49-year-old Autistic and I have spent much of my adult life homeless and hungry because, like so many of us, I was sliding through the cracks; one agency would turn me away for being “too high functioning” and another would turn me away for being “too low functioning.”

I had a very hard time in school and left unprepared for independent living, higher education, or a career. I could make it through an interview for a minimum wage job but couldn’t manage to keep those jobs for more than a couple of weeks before I was “let go” with no explanation. Since my lack of formal education only qualified me for the lowest income employment to start with, I couldn’t keep a roof over my head. Being forced to change jobs two to four times per month left too many gaps in an hourly wage that was already painfully low.

My disability-related poverty is more than just a personal anecdote. The U.S. Census Bureau has statistics about poverty and disability that are jaw-dropping: at the same time that the overall poverty rate in the U.S. dropped to 14.5%, the poverty rate for disabled people rose to 28.8%. My struggle to provide for myself is echoed by a U.S. study that found that only 17% of Autistic adults between the age of 21 and 25 have lived independently, compared to 34% of non-autistic 21- to 25-year-olds with intellectual disability.2  I may not have been living with parents or in a group home or institution, but sleeping in the park and eating from dumpsters is not exactly what I would call “independent living.”

According to the National Autistic Society, one-third of Autistic adults in the UK have neither employment nor access to benefits.3 I am not aware of a similar study in the United States yet, but I have met so many Autistics and other disabled people living on the streets and in other highly marginalized settings during my own years of homelessness that I would not be at all surprised to find similar statistics. Twelve percent of Welsh Autistic adults reported experiencing homelessness and 65% of homeless people sleeping in the streets in Devon, England, had been diagnosed with autism. Surveys have indicated an autism rate between 1% and 2% across all countries. Rates of autism among the homeless population are 3000% to 6000% higher than in the general population – a percentage so overwhelming I don’t have words adequate to express my outrage.

While I am still technically homeless, I have moved into a comfortable and reliable vehicle and am happy with my current living situation. I am sustained by Supplemental Security Income (SSI) disability benefits but my income from working as a freelance writer is slowly growing. Mine is still an economically fragile life, but I don’t pay rent and the increased mobility lets me afford limited travel to promote my books. I dream of being economically self-supporting and I am working at and making progress toward that goal. Other homeless Autistics have not been so fortunate in finding their niche, however. Research suggests as much as 13% of forensic populations may be Autistic.4 A London study of prisoners with “neurodevelopmental disorders and difficulties” found that neurodivergent prisoners were three times as likely to have been homeless before coming to prison and 80% of neurodivergent prisoners had previous convictions.5

It is time to turn these figures around. There is no excuse for leaving so many vulnerable members of society to flounder with no support. Autistic homelessness needs to be addressed on every level, from inadequate employment supports to insufficient services and benefits to the financial and social barriers to healthcare access that result in underdiagnosis and lack of appropriate resources for Autistic adults. Everyone deserves a safe place to live and Autistic adults need personal and social supports to protect us from the poverty and homelessness we are disproportionately at risk of suffering.

Sources:

(1) Brugha TS, Spiers N, Bankart J, et al. Epidemiology of autism in adults across age groups and ability levels. Br J Psychiatry. 2016.

Lundström S, Reichenberg A, Anckarsäter H, Lichtenstein P, Gillberg C. Autism phenotype versus registered diagnosis in Swedish children: prevalence trends over 10 years in general population samples. BMJ. 2015;350:h1961.

Wing L, Potter D. The epidemiology of autistic spectrum disorders: is the prevalence rising?. Ment Retard Dev Disabil Res Rev. 2002;8(3):151-61.

(2) Anderson KA, Shattuck PT, Cooper BP, Roux AM, Wagner M. Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism. 2014;18(5):562-70.

(3) Redman, S et al. Don’t Write Me Off: Make the system fair for people with autism. The National Autistic Society. 2009.

(4) Anckarsäter H, Nilsson T, Saury JM, Råstam M, Gillberg C. Autism spectrum disorders in institutionalized subjects. Nord J Psychiatry. 2008;62(2):160-7.

(5) Mccarthy J, Chaplin E, Underwood L, et al. Characteristics of prisoners with neurodevelopmental disorders and difficulties. J Intellect Disabil Res. 2016;60(3):201-6.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.