Katie Johnson's blog posts

Prevent the abuse

Posted on February 5, 2019

Like many these past weeks, I’ve been following the tragic story of the woman with significant intellectual disabilities receiving services at Hacienda HealthCare in Phoenix, Ariz. According to news reports, she gave birth to a child after being sexually assaulted, allegedly by a 36-year old licensed practical nurse. The reports also have tracked the resignation and suspension of two doctors at the facility, and the removal of the now former CEO, who reportedly had sexual harassment allegations leveled against him by various staff members beginning in 2006. Like most people, the story disgusts me, but unlike many, it didn’t shock me.

Disabled people are seven times more likely to be victims of sexual assault than their nondisabled counterparts, according to Department of Justice crime statistics. These crimes are most often committed by people individuals with disabilities know, during the daytime, and in places where the victims, their loved ones or others assume they’d be safe, as reported in an NPR report by Joe Shapiro.

We’ve seen the news headlines, heard the stories, and for some experienced the turmoil of abuse and mistreatment by the hands of so-called “caregivers”. Hacienda HealthCare, like many service providers, reported it was shocked that its workers could be “capable of seriously harming a patient” despite abuses like this being ever-present in the field.

To prevent abusive practices like these, there need to be dramatic improvements in the selection, competency-based training, and outcomes-based evaluation of these caregivers, sometimes referred to as direct support professionals. Most care workers are not abusive to the people they support—on the contrary they are often the key to quality outcomes— but without investment in the direct support workforce as a whole, abuse like this will continue. However, this alone is not sufficient to end this sexual assault epidemic.

People assume that in segregated settings, like Hacienda HealthCare’s long-term care facility, people with disabilities will be kept safe and secure, when studies show the opposite is true. People are more likely to face abuse and neglect in segregated placements. Simply improving screening, training and supervision of workers at segregated care facilities is not enough. Instead, states need to reconsider programs they are funding, and invest in truly community-based supports where abuse and neglect are less likely to occur.

Policymakers and service providers need to appreciate the gravity of this sexual assault epidemic and take appropriate action to prevent abuse and neglect of people with disabilities.

This entry was posted in civil rights, long-term care and tagged Hacienda Health Care, long-term care, sexual abuse.

Autism Speaks for whom?

Posted on April 28, 2017

Walking through UD’s Trabant student center early this month, I saw a few student protestors standing next to an information table staffed by a campus chapter of Autism Speaks. The protestors’ signs read, “Autism Speaks doesn’t speak for me” and “Before you donate consider the facts.” I got excited at the sight of a little political activism in relation to disability issues on our campus, and eagerly wanted to join in.

With the protestors.

Many people wanting to help individuals with autism support Autism Speaks, making it the largest autism advocacy organization in the country. But while it is credited with increasing service coverage under Medicaid for speech-language pathology and occupational therapy, Autism Speaks is significantly flawed.

Autism Speaks does not meaningfully include the voices of people with autism in its decisions, as only two individuals among its 31-member board of directors have autism.

Until the fall of 2016, Autism Speaks’ mission statement focused on finding a “cure” for autism. Despite changing that language, 35 percent of Autism Speaks’ budget still goes towards research on causation and “prevention.”

Less than 4 percent of Autism Speaks’ budget goes toward family services, with many of these services still focused on cures.

And while Autism Speaks does promote awareness (It’s important, of course, to understand the increasing prevalence rates of autism and the need for improved training, services and supports.), advocacy organizations need to move beyond awareness towards acceptance and appreciation. Autism is not a tragedy or a misfortune, and the barriers individuals with autism face come principally from cultural attitudes that stigmatize disability. Awareness without education can actually be incredibly harmful and detrimental to the community.

Fortunately, there are other options. The Autistic Self Advocacy Network (ASAN) is run by and for autistic people. Forty-three percent of ASAN’s budget advocates for disability rights, focusing on acceptance and appreciation for autism as an aspect of diversity. Thirty-five percent of ASAN’s budget goes towards “Leadership Programs,” empowering autistic individuals who are often overlooked or marginalized. In contrast to research that focuses on genetic and other causation-oriented studies with potential eugenic consequences, ASAN advocates for research related to communication and assistive technology, best practices in providing supports, and educational methodologies. Its focus is on inclusion and acceptance of all, breaking down barriers and ensuring full access in the community.

Autism Speaks isn’t the sole problem. It’s just the largest player among many working to cure, prevent and eliminate autism. Unfortunately, there are hundreds of organizations that focus on changing individuals with autism to force them to become more neurotypical in order to fit in at school or in the community, rather than shifting the community to be open to the incredible perspectives and wonderful attributes individuals with autism bring to their communities because of their autism.

If you’re a person with autism, consider joining or creating an ASAN chapter in your area (a chapter does not exist in Delaware). You can also spread the word about ASAN’s work and mission through responsible social media, through advocacy work on state Developmental Disability Councils or in meetings with elected representatives.

If you’re a person who is not autistic or a parent or loved one of someone with autism, you can do incredible things to stand with the autistic community. Educate yourself further on the issues, listen to individuals with autism, join an ASAN chapter in your area (however you cannot serve on the chapter’s board), distribute ASAN resources, volunteer with ASAN, and speak with legislators.

There are plenty of ways to become involved as an ally to the autistic community, but supporting Autism Speaks and other organizations that are ignoring the voices of people with disabilities is not one of them.

This entry was posted in autism, civil rights, inclusion, people with disabilities, public policy and tagged Autism Speaks, Autistic Self Advocacy network.

New outlooks on autism

Posted on April 13, 2017

The author’s “alternative Breaker” colleagues. She joins them in the bottom row, extreme right.

What does it mean to be an ally? That’s something I asked my fellow University of Delaware colleagues multiple times over spring break and something nearly 600 UD students all over the country have been thinking about. They and I are a part of an organization called University of Delaware alternative Breaks (UDaB).

UDaB is a student-run organization at UD that coordinates service-based learning experiences across the country that focus on social issues. Our 20 trips this spring break emphasized working with communities rather than for them. UDaB considers listening to be the first step in becoming an ally, and focuses on education and reflection as a means of moving people to becoming more active citizens in their own communities. It’s about so much more than just a week of service!

I was honored to lead the trip to Camp Royall, an overnight, recreational, outdoors camp for school-aged individuals with autism in North Carolina. Beforehand, for six weeks, my co-site leader Lauren and I had prepped our 19 “alternative Breakers”, many of whom had never interacted closely with someone on the spectrum, with weekly meetings relating to social justice, privilege and steps to becoming effective allies in relation to the autistic community. From assignments researching articles and blogs of individuals with ASD, watching TedTalks on neurodiversity, and completing checklists and watching videos designed to examine privilege and oppression in relation to disability, our colleagues readied themselves for a week outside their comfort zone.

At the camp, our 12-hour days and two-hour reflection sessions left our fellow student colleagues bombarded with the realities and complexities of autism as a social issue. Mark, assistant director of Camp Royall, trained our participants about the interconnected nature of social categorizations like race, class, gender and ability level, the value of unconditional positive regard, and the need to understand and appreciate all forms of communication. While the focus of Camp Royall is to provide a safe space specifically to meet the needs of individuals with ASD, Mark reminded us that this sanctuary is so much more than for people with autism; it’s a space for all aspects of diversity. It is truly a place where all people are not just accepted but celebrated!

With this being my second UDaB trip to Camp Royall, I’ve begun to more deeply reflect on Camp Royall as a sanctuary. So many of our campers have incredibly difficult and unknowable lives, where they are often not accepted in their own communities, sometimes restrained or abused in schools or at home, and face a variety of difficulties simply because of how others view and react towards them. My colleagues from UD also have begun to understand what it means to celebrate people for who they are, to step into another’s shoes, to examine people’s strengths when society often focuses on the weaknesses, and to question our role in effecting change. Many of our “alternative Breakers” changed their outlook on autism and society’s role in the challenges people face.

Back at UD, all 21 of us feel we’ve been impacted by our experience directly working with this community, and believe we’re ready to be more informed and engaged citizens and allies with the autistic community. Lauren and I hope our peers will continue to question the world around them and their role in creating more inclusive and celebratory communities.

This entry was posted in autism, diversity, Education, inclusion, University of Delaware and tagged Camp Royall, University of Delaware alternative Breaks (UDaB).

Shatter your complacency

Posted on October 27, 2016

Advocate Stephanie Woodward startled her interviewer in the film Bottom Dollars by revealing that some workers with disabilities earn just two cents an hour.

I thought I understood the issue of employment for people with disabilities, until I watched Bottom Dollars, a new documentary from Rooted in Rights and filmmaker Jordan Melograna, which revealed to me how little I actually knew.

The film will likely have the same revelatory effect on you – should you attend a free showing of Bottom Dollars at UD’s Center for Disabilities Studies on Nov. 4 at noon. And don’t be surprised if the film spurs you to action, making you want to do something about the outrageous and extensive injustices it exposes that affect people with disabilities in the workplace far too frequently.

I’d long known that people with disabilities are often devalued, discouraged and exploited at their jobs. In restrictive sheltered workshops, they’re assigned menial tasks that fail to make use of their unique skills and talents. But this fact from the film, made me sick: Some earn as little as 50 cents an hour. That’s what James Meadours says he was making at his first job in Oklahoma. Stephanie Woodward, the director of advocacy at Disability Rights Washington in Rochester, NY, reported in the film that through a Freedom of Information Act request, she found that Good Will pays some of its workers with disabilities two cents – two cents! – an hour.

Advocates for people with disabilities in the film place much of the blame for this abuse of employees with disabilities on the perpetuation of a subminimum wage in 48 states that encourages companies to pay select workers less than the societal minimum, simply because they have a disability.

How do they get away with paying so little? The Fair Labor Standards Act of 1938, which set a revolutionary minimum wage guarantee, unfortunately also included Section 14(c), which makes it legal to pay people with disabilities a subminimum wage.

Almost 80 years later, things need to change.

We need to phase out sheltered workshops, begun in the 1950s and 1960s, that originally were intended to be places for vocational training but that today promote segregation. Low expectations from the public, matched with legal business incentives, keep alive these workhouses that lead to disastrous outcomes for people with disabilities.
We need to see that more people with disabilities have individualized transition plans, which, as the film demonstrates, allow them to perform with pride jobs in the community that fit their skills.
We need to do away with the subminimum wage. New Hampshire did so in July of 2015. Maryland did so in May of 2016. What’s keeping Delaware? What’s keeping the other 47 states? Subminimum wages are discriminatory and pronounce that people with disabilities are subhuman and deserve to live in poverty forever.

Everything’s not bleak. The film shows how some communities are providing supports that increase chances businesses will provide integrated employment opportunities to people with disabilities. They’re not doing that as charity, but rather because they understand that people with disabilities benefit a community. As employees, they’re overwhelmingly hardworking, dedicated and productive.

Still, huge steps need to be taken.

I encourage you to come watch Bottom Dollars, and let it shatter your complacency, the way it shattered mine.

This entry was posted in accessibility, authentic community integration, Center for Disability Studies, civil rights, community living, employment, inclusion, people with disabilities, public policy, sheltered workshops, subminimum wage, Uncategorized and tagged Bottom Dollars, Fair Labor Standards Act, Good WIll, individualized transition plans, Rooted in Rights, sheltered workshops, subminimum wage.

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