Day In Washington: the Disability Policy Podcast Day Al-Mohamed

Emily Ladau is our guest on this episode of Day In Washington. Listen as she shares some of what she has learn throughout her life, and what policy issue she is most concerned about.









Bio



Emily Ladau is a passionate disability rights activist, writer, speaker, and digital communications consultant whose career began at the age of 10, when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. In 2017, she was named as one of Adelphi University’s 10 Under 10 Young Alumni. In 2018, she was awarded the Paul G. Hearne Emerging Leader Award from the American Association of People with Disabilities.



Emily is the Editor in Chief of the Rooted in Rights Blog, a platform focused on amplifying authentic writing on disability rights issues. And, she is a co-host of The Accessible Stall Podcast.



Emily’s writing has been published on websites including The New York Times, SELF, Salon, Vice, and Huffington Post. Emily has spoken before numerous audiences, ranging from a panel about the 25th anniversary of the Americans with Disabilities Act at the U.S. Department of Education, to a keynote presentation at the 2018 TASH Conference.



All of Emily’s activism is driven by her belief that if we want the world to be accessible to people with all types of disabilities, we must make ideas and concepts surrounding disability accessible to the world.









Links

Hello and welcome to Day in Washington, your disability policy podcast. I’m your host Day Al-Mohamed working to make sure you stay informed. 



I know everyone was watching the news about the Hacienda HealthCare facility in Phoenix, Arizona, where a 29-year-old patient had been raped several times, and the staff had no idea she was pregnant until she went into labor and gave birth to a healthy baby boy on December 29th.



Originally the story posted that she was in a coma. That has been corrected by her parents who described her as intellectually disabled because of seizures in early childhood. While she doesn't speak, she has some mobility in her limbs, head and neck. She also responds to sound and can make facial gestures. What bothers me is that this isn’t some piece of meat on a table but that this was a vulnerable woman who was well aware of what was being done to her.



Nathan Sutherland was the nurse who was supposed to be looking after her; and instead raped her. He was arrested in January after Phoenix police said his DNA was tied to the baby. Last month, his attorney said there was "minimum evidence" his client committed the crime. Really? The first of what will probably be many hearings, was yesterday.



But let’s get real here. People with disabilities are sexually assaulted at nearly three times the rate of people without disabilities.



A 2005 survey of people with disabilities indicated that 60 percent of respondents had been subjected to some form of unwanted sexual activity. Unfortunately, almost half never reported the assault.

Approximately 80% of women and 30% of men with developmental disabilities have been sexually assaulted. The part that is really awful? Just 3% of them are ever reported.

The vast majority of sexual assaults, 80 to 90%, are committed by someone the victim knows. And for many people with disabilities, comes from caregivers.



The only reason Nathan Sutherland was caught, was because the woman gave birth. Notice, I didn’t say “got pregnant” because a very small, very jaded part of me wonders if some facilities don’t just “get such things taken care of” out of the light of day.



The #MeToo movement has drawn much attention to sexual harassment and sexual abuse, I can only hope that as it garners more attention and visibility it continues to include disability. As of right now, even with the persistence and support of parents, family members and friends, victims with disabilities are not receiving justice.



What is also disturbing, and is particularly important as related to disability, is that in many instances, the person who has a disability may rely on the perpetrator for care or support, making it even more difficult to come forward. Today, more and more women, including women with disabilities are coming forward to share their stories. We are not looking at just “ways to protect” but examining perpetrators and the structures and institutions that protect them and allow them to continue their behaviors.



If you know of or suspect sexual assault or abuse please contact your local police station or 911. You do not need proof to file a report. If the person being abused is considered a vulnerable adult under your state laws, you may also be able to contact the local Department of Human Services or Department of Social Services.

If you or someone you know has been a victim of sexual assault or abuse, to speak with someone wo is trained to help, call the National Sexual Assault Hotline at 800-656-HOPE (4673). If you are Deaf, you can access help via video phone 1.855.812.1001 (Monday to Friday 9 a.m.—5 p.m. PST) contact the Deaf Abused Women’s Network (DAWN) for legal, medical, system advocacy, and survivor support services. Video Phone: 202.559.5366.

You can also chat online anonymously with a support specialist trained by RAINN...

Hello and welcome to Day in Washington, your disability policy podcast. I’m your host Day Al-Mohamed working to make sure you stay informed.  This is the Disability Report for March 2019.



JUSTICE:   March 1st is known within the disability community as the Disability Day of Mourning. It is the day when the disability community comes together to remember the victims of filicide – people with disabilities who were murdered by their family members. Vigils are held on March 1st in cities around the world. Recognized since 2012, the vigils have been supported by the Autistic Self Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund and other disability rights organizations. In March 2017, the Ruderman Foundation issued a report that provided more concrete numbers to the number of people with disabilities murdered by their caregivers.



They documented more than 200 deaths from 2011 to 2015. And of course, that is only those that merited media attention. There currently is no way to capture all of these murders based on disability. And perhaps what is more disturbing is the public perception and media focus on the killer rather than on the victim. It is seen as a “mercy” or as “ending suffering” or an “overwhelmed caregiver” in fact blaming the victim for their own death. One person with disabilities is killed by a parent or caregiver each week and the Disability Day of Mourning is a recognition of those lives taken, and lives forgotten as worth less than those of able bodied.



On Media Coverage of Murder of People with Disabilities by their Caregivers - https://issuu.com/rudermanfoundation/docs/murders_by_caregivers_wp_final_fina



 



DEFINITIONS: Words matter. We know this. We’ve been told this over and over. James Skoufis of the 39th Senate District of the State of New York is taking that to heart. He is the sponsor of Senate Bill S4276. The bill makes technical corrections to references to the Office of Mental Retardation and Developmental Disabilities, changing it to the Office for People with Developmental Disabilities. It is not an office for the condition, but for people.



Legislation for changes in statute the Office of Mental Retardation and Developmental Disabilities - https://www.nysenate.gov/legislation/bills/2019/s4276



 



HEALTHCARE:  The Charles and Margery Barancik Foundation and Gulf Coast Community Foundation commissioned the University of South Florida to conduct a scan of mental health services in May 2018. The goal was to identify strengths and gaps in the system and prioritize ways to make the system work for youth and families. The study revealed the annual economic cost of untreated mental illness for children and young adults in Sarasota County is nearly $86.2 million. This is primarily from suicide, criminal justice, education, and worker productivity.



Roughly 15 percent of Sarasota County’s residents are under 18 years old, or around 60,488. About one in five experiences a severe mental disorder during their life. Half of all chronic illness begins by the age of 14, and three-quarters by the age of 24.



Florida ranks 50th in mental health services, according to the Florida Policy Institute. The state has the third-highest percentage of mentally ill persons who are also uninsured.



In 2014, the state provided just $36.05 per person in support of mental health services, less than one-third of the U.S. average of $125.90.



The study specifically highlighted a lack of inpatient care, residential treatment programs, independent living options for adults, case management, post-discharge services from crisis stabilization units, and youth psychiatric treatment.



The study doesn’t solve the problem but it puts hard numbers and a price to what many disabili...

Hello and welcome to Day in Washington, your disability policy podcast. I’m your host Day Al-Mohamed working to make sure you stay informed.  Today, I want to take a few minutes to talk about the recent college admissions scandal, reflect a bit on what happened, and what it means for students with disabilities. 



It is impossible to look at the news in the last few weeks and not hear about the college admissions cheating scandal. Operation Varsity Blues was an FBI operation that resulted in 50 people being charged with bribery and mail fraud. They were part of a complex cheating scheme to get unqualified children of rich parents into elite colleges.



One of the key elements that impacts the disability community is how, affluent parents paid to have their children diagnosed with learning disabilities so they could get special accommodations on the SAT and ACT college entrance exams. Those accommodations can include extra time on tests or allowing them to take their exam in a room alone with just a proctor to minimize distractions.



This is not a new discovery. In 2010, a California audit of College Board test takers “showed a disproportionate number of white, affluent students receiving accommodations, igniting suspicions of exaggerated or nonexistent disabilities”. In 2006, ABC reported the practice of “diagnosis shopping?—?a cottage industry of doctors and medical professionals, all willing to give students the documentation they need to get the extra test time they want.”



Why the sudden increase and interest in using a learning disability to get a “leg up”? It actually goes back to 2003 where the College Board had been sued. Previously they "flagged" the scores of students who took the SAT with extra time. I remember being pissed that my tests were “flagged”. I didn’t want a college application committee to know about and/or judge me by my disability until I chose to disclose it. The flagging intimated that my scores weren’t as “valid” as a non-disabled student’s score. So I was glad to see the practice done away with. After the "flag" was dropped, colleges would have no way of knowing that the test was taken under nonstandard conditions. Of course this now had the unintended side effect of not just reducing the stigma for disabled students but created an INCENTIVE for folks to game the system. You no longer would carry the “scarlet letter D” for disability on your scores.



Let me quote from one of the affidavits that were filed in the case: "What happened is, all the wealthy families that figured out that if I get my kid tested and they get extended time, they can do better on the test. So most of these kids don't even have issues, but they're getting time."



Accommodations, instead of being viewed as a “levelling of the playing field”, were viewed as something advantageous and these people were willing to pay hundreds of thousands of dollars, to ensure their children could get them.



And yet, for many families with youth with disabilities, it is a nightmare of providing testing results and proof of disability, and the constantly changing goalposts of what paperwork is needed for desperately needed accommodations. Diagnostic testing is not cheap, running anywhere from about $1,000 to $5,000. And the bureaucracy to getting accommodations approved can take months. Where students without disabilities might be able to take tests multiple times to improve their scores, a student with a disability, because of the paperwork, ongoing testing, proof of disability, checks and rechecks, if they’re lucky, and their timing is right, they just might get their accommodations approved in time to take the test ONCE.



And beyond the cost of testing to prove one’s disability and the timing and planning needed to ensure it is in place, there has always been skepticism in academic fields about accommodations.

INTRODUCTION

Hello and welcome to Day in Washington, your disability policy podcast. I’m your host Day Al-Mohamed working to make sure you stay informed.

POST

Recently I’ve been thinking about bulling. We’re all familiar with what bullying is right? Bullying is unwanted, aggressive behavior (usually among school aged children and youth) that involves a real or perceived power imbalance. The behavior is repeated, or has the potential to be repeated, over time.  It is verbal, it is social, it is physical, it is even digital now with so many young people spending hours on their phones, tablets, and computers.



Michelle Carter was a teenager and when her 18-year-old boyfriend texted her and said he wanted to kill himself, she urged him on. Goaded him into it. He killed himself by filling his truck with carbon monoxide in a parking lot in Fairhaven, Massachusetts. The courts just upheld her manslaughter conviction. The judge ordered her to serve 15 months in prison. But the case isn’t over yet. There are many arguing that she is being punished for “speech.”



A CDC survey in Massachusetts in 2017 found that of nearly 1 million K-12 students, 15 percent reported being bullied in school or online, while 12 percent said they had contemplated suicide. Students with disabilities are bullied more than their non-disabled peers.  In fact, recent studies show they are likely to have been bullied more than three times as much. If you do the maths that is a terrifying number, that is more than 1/3 of kids with disabilities who have contemplated suicide. Even if it doesn’t lead to suicide, bullying can lead to school avoidance and increased absenteeism, dropping grades, an inability to concentrate, anxiety, depression, a loss of interest in academic achievement, and behavioral outbursts in some youth.



In 2014, the Administration sent out a Dear Colleague letter highlighting the impact of bullying on children with disabilities and specifically invoked the Individuals with Disabilities Education Act (IDEA) which requires that each child who has a disability and qualifies for special education and related services must receive a free appropriate public education (FAPE). Basically, that bullying interferes with that access to a free and appropriate public education. The letter also highlighted Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990 because the harassment denies a student with a disability an equal opportunity to education.



And of course this isn’t just in person. More and more we are seeing young people bullied and harassed via social media, texts, and other electronic communications.  A recent study showed that 30 percent of youth ages 10-20 reported experiencing some form of online harassment or victimization.



In 2017,  nine senators asked Secretary Betsy DeVos what resources the U.S. Department of Education was providing schools in order to counter "the recent increase in hateful and discriminatory speech and conduct." They also asked for the number of ongoing investigations by the department into student-on-student harrassment based on things like race, religion, and sexual orientation, as well as whether the federal task force on bullying prevention would continue.



And if the Federal government isn’t going to act, some state governments are looking to address the bullying problem themselves.



California schools will be required to implement procedures to prevent bullying and cyberbullying by the end of 2019. In addition to the new procedures, Assembly Bill 2291, authored by Assemblyman David Chiu, D-San Francisco, requires school employees who regularly interact with students to have access to a bullying and cyberbullying training module developed by state officials.



Two additional bills — Assembly Bill 2022 and Senate Bill 972 — approved ...

Hello and welcome to Day in Washington, your disability policy podcast. I’m your host Day Al-Mohamed working to make sure you stay informed.  This is your Disability Report for the week of February 19, 2019.

Housing/International

On January 25th, the Supreme Court of Canada (SCC) released a landmark decision in S.A. v. Metro Vancouver Housing Corporation.  In this case, the housing authority wanted to take into account the S.A.’s Henson Trust. For those of you who may not know, Henson Trusts in Canada are like our ABLE Accounts. Ours are tax-advantaged savings accounts for individuals with disabilities and their families. They’re still pretty new here as the ABLE Act only just passed in 2014.



It’s based on the idea that millions of people with disabilities and their families depend on a wide variety of public benefits for income, health care and food and housing assistance. Eligibility for many of these public benefits require meeting a means or resource test that stops people from building any savings for accessible housing, transportation, assistive technology etc.



So the Supreme Court of Canada agreed that Henson Trusts should NOT be considered an asset by the housing authority, allowing Canadian citizens to receive a housing subsidy for accessible housing without bankrupting themselves.



http://www.ccdonline.ca/en/humanrights/litigation/media-advisory-25Jan2019

Employment

In February, the Kessler Foundation and University of New Hampshire released the nTIDE Report focusing on disability employment.



In the Bureau of Labor Statistics (BLS) Jobs Report, employment for working-age people with disabilities decreased slightly from 29.9 percent in January 2018 to 29.8 percent in January 2019. For working-age people without disabilities, employment increased from 72.7 percent in January 2018 to 73.6 percent in January 2019.



But what is perhaps a bit more disturbing is the labor force participation rate for working-age people. The labor force participation rate is the percentage of the population that is working or actively looking for work. Employment rates show people who are working and/or not working. This shows those who are still trying to be employed and those who have given up and no longer in the workforce.



For people with disabilities, it was 33 percent in January 2018 and remained at the same level (33 percent) in January 2019. So basically, 67% of people with disabilities are not even participating in the system. Only 33% are in the workforce at all. And that number hasn’t changed. Now lets compare it to working-age people without disabilities, their labor force participation rate increased from 76.1 percent in Jan. 2018 to 76.9 percent in January 2019.



https://iod.unh.edu/article/2019/02/ntide-january-2019-jobs-report-job-numbers-hold-steady-americans-disabilities

Culture

February brings some great news by way of disability culture. New Jersey becomes second state to require schools to teach LGBT and disability-inclusive material. Children in the New Jersey school system will be exposed to "the political, economic, and social contributions of persons with disabilities”. While the focus of the discussion has been primarily on LGBTQ history, having disability included is a big win. California already has such a law in place. Here’s hoping those textbooks get updated with some great suggestions (Beyond Helen Keller and Franklin Delano Roosevelt). I for one, would love to see some people of color with disabilities and their contributions highlighted.



https://www.cnn.com/2019/02/01/us/new-jersey-lgbt-disability-curriculum-trnd/index.html

Transportation

What most wheelchair users with disability know is that only a quarter of NYC subway stations have elevators. They are also aware that many many of the elevators end up out of service with little to n...