Disability Futures

A jury has awarded a woman more than $500,000 after agreeing that her 2014 firing from a Saginaw hospital was for taking medical leave and a form of discrimination.

The Bay City Times reports the jury in U.S. District Court in Bay City on Friday found Covenant Medical Center in violation of the Family and Medical Leave Act and the Michigan Persons with Disabilities Civil Rights Act. Covenant also is responsible for attorney fees.

Amanda Perry, who had had a history of psychiatric diagnoses, worked as a biller and office coordinator.

Covenant spokesman Larry Daly says the hospital is "very disappointed" in the outcome of the case. He says the hospital acted "fairly" and she lost her job because she couldn't perform her duties. An appeal is planned.

For consumers with intellectual and developmental disabilities (I/DD) and the provider organizations delivering services (including long-term services and supports), the Medicaid system is complex and different in every state – a challenge covered previously by my colleague Athena Mandros in, Medicaid Services For Consumers With I/DD – You Need A State Roadmap. As we continue to look towards new policies to promote the use of home- and community-based services (HCBS), the complexities continue to grow.

The new HCBS rules are just one more step on the long journey towards moving our service delivery system for consumers with complex support needs away from residential and inpatient care and into more community-based settings. Why are we seeing this shift in delivery setting? Spending is consistently lower for consumers receiving HCBS waiver services, than consumers living in an intermediate care facility (ICF-IDD). And residents of smaller community-based settings are healthier, happier, have better quality of life, and are able to function more independently if they move to a new setting (see Community Living and Participation for People with Intellectual and Developmental Disabilities: What the Research Tells Us).

From taking her stand as a six-year-old poster child for polio, to publishing a national magazine devoted to disability issues, Cyndi Jones, Revelle ’74, has spent her life fighting for the rights of people with disabilities.

Many who devote their lives to social justice can point to a definitive moment when the need to stand up to inequality became saliently apparent.  Not so many can say they experienced such a moment at the age of six, but for Cyndi Jones, Revelle ’74, a first-grade classroom would prove to be her first touch with the harsh reality of discrimination.

Jones contracted infantile paralysis, or polio, at the age of two. As a young girl in St. Louis, Mo., she was selected to be the March of Dimes poster child in the region. Jones remembers the excitement of being the young girl on crutches waving from parade floats and featured on local billboards. Throughout the 1950s, hers was the smiling face meant to open people’s eyes to polio. Yet when the organization’s mission moved from polio fundraising to vaccination, just the reverse occurred—Jones’ eyes were opened to the prevailing attitudes that she and other people with disabilities faced.

While school nurses have long been recognized for their vital role in supporting children’s educational success through better health, there is increasing recognition that school nurses are integral to reforming our health care delivery system. School nurses are the eyes and ears of the school community; being physically present throughout the school day makes them uniquely positioned to be a child’s health care touch point across multiple settings, from the classroom to the physician’s office. 

This past month, American Academy of Pediatrics (AAP) released a policy statement highlighting the important role school nurses play across a child’s continuum of care. In particular, the AAP statement recommends that every school should have at least one nurse. In instances with larger student populations and/or greater need, more than one nurse may be necessary. This is important on a number of fronts but most notably because many schools currently go without this important resource. In 2014, more than half of all elementary schools did not have a registered nurse working at least 30 hours a week.

 (S)chool nurses are able to:

• Educate and promote health and safety, including what makes a healthy living environment
• Identify and intervene in potential health and wellness issues—including addressing social determinants of health that impact children
• Collaborate with physicians and health teams by jointly developing and implementing medical action plans for a vast array of conditions
• Provide case-management services
• Provide on-site care for illness or injury emergencies
• Identify behavioral health risks, while providing support to the student in school and referral to appropriate resources
• Build capacity for health learning, self-advocacy, and literacy

I’ve always noticed, but it has never really hit me until now, that very few Blacks are a part of the movement.

While we do get support from other Blacks, and there may be a token Black or two at local Not Dead Yet events and protests, as far as I know, I’m the only Black person in the country who is consistently active in this movement. I could be wrong. I hope I am.

Why is this? Why don’t more Black folks get involved with the anti assisted suicide movement?

It is well-known that the face of the anti assisted suicide movement, indeed, the disability rights movement, is White. It is well-known that often, contributions of Blacks to the disability rights movement are erased or unacknowledged. Even if Blacks are seen as leaders, the ones in front of the cameras or receiving the awards and accolades are usually White.

A 2013 Pew study showed that 65% of Black folks are against assisted suicide. Still, there is scant involvement of Black folks in campaigns to stop legislation that would legalize assisted suicide and euthanasia.

I have some ideas why there’s almost no Black participation in this movement.

1. This isn’t a part of our culture.

Frankly, assisted suicide isn’t something that is discussed in the Black community. I’d never heard of it, even though my birth mother lived with chronic illness and lived to see the end results of her condition. Not once did she complain. Not once did she ask to die. None of the folks in my church or community wanted to die because they were sick or disabled. I’m not saying that suicide doesn’t exist in the Black community, but in my experience, it was due to depression related to situational issues, such as the loss of a job, a spouse or loved one or something else entirely. When we get sick or become disabled, we or our families often turn to prayer or the church.

2. Assisted suicide is considered a White thing.

Many Black folks who I talk to about the anti assisted suicide movement say “that’s a White thing, we don’t do that stuff”. They ask me why have I devoted myself to a predominantly White issue.

3. Blacks with disabilities have enough specific issues to work on without working on an almost exclusively White issue that doesn’t affect us.

Some Black activists have told me that I’m wasting time on a movement that has nothing to do with us and that I should be involved in working on issues that directly affect Black folks.

The Center for Disability Rights has created a PSA to address disability and assisted suicide, one of the primary topics highlighted in the new romantic comedy, Me Before You. The film is based on the novel of the same name by Jojo Moyes, who also penned the screenplay. Me Before You tells the story of a cheerful underachiever, Louisa, who is hired as the Personal Care Attendant for a wealthy quadriplegic named Will Traynor. Louisa soon realizes her job is to convince Will to live, as he has an appointment at an assisted suicide facility in Switzerland in six months. Despite the two falling in love Will tells Louisa that love is not enough, and goes through with killing himself because of his disability.

The murder and killing of disabled people in Hollywood films is a common theme. Assisted suicide, in particular, can be seen in a number of films beyond Me Before You including Million Dollar Baby, The Sea Inside, and Whose Life is it Anyway? Assisted suicide is often presented as a logical ending to disabled lives. In these films, disabled people are seen as a burden, and are presented as suffering, so assisted suicide is seen as a reasonable and rational outcome.

In response to the controversy, disabled people around the world have been protesting the movie, both at the London and New York premieres, and during the June 3 opening weekend. As the film heads into its second week in over 2000 theaters across the U.S., activists have continued to try to counter the film through a series of informational events that are being held offline, as well as through social media.

The PSA, which has already garnered over 150,000 views on Facebook, was developed by the Center for Disability Rights with filmmaker Clark Matthews. It features real individuals with disabilities, as they counter the message presented in these harmful films. The PSA highlights that disabled lives are worth living, and that assisted suicide is harmful to the disability community. The idea behind the PSA is to flip the script, and change the story when it comes to disability. Since there are not many films that counter the message that disabled lives are not worth living, the PSA and worldwide protests of the film are attempting to educate the public about the truth about disability. Everyone, whether they have a disability or not, is encouraged to stop accepting such harmful portrayals of disability, by avoiding these movies. Instead, the message is to promote content by disabled creators, and encourage Hollywood to make films that show disabled people living life, something the over 1 billion people with disabilities around the world do, every single day.

"I am quite a fussy eater. I only like avocado and boiled egg," Stefania Hanson explains, as her friend pushes a trolley past the frozen peas. They're navigating their way around Asda in Birmingham's Perry Barr, finding ingredients for a cookery session.

The activity is part of a three-day summer school for students with autistic spectrum disorders (ASD) who are starting university this month. Run by Birmingham City University (BCU), the programme helps those who are academically very able, but may not have some of the social or life skills that university demands. "It's also a chance for the students – who can have very specific dietary or sensory needs – to have a practice run before the real thing," says Karin Qureshi, manager of counselling and mental health at BCU.

Rep. Frank Liberati, a Democrat, and Sen. Rick Jones, a Republican, have sponsored bills that would increase penalties for assaulting a person with a developmental disability. 

The survey included 1,439,188 preschool students in 28,783 schools. Of those, 6,743, or 0.47%, were suspended once or more than once. Although black girls represent 20% of preschool enrollment, 54% of preschool girls suspended once or more were black. And black preschool children overall were 3.6 times as likely to be suspended as white preschoolers.

The results don't "paint a very good picture,” said Liz King, senior policy analyst and director of education policy at the Leadership Conference for Civil and Human Rights. She called parts of it "startling.”

Across all grades, 2.8 million students were suspended once or more. Black students were nearly four times as likely to be suspended and almost twice as likely to be expelled as white students. Students with disabilities were also twice as likely to be suspended as general education students. 

The disparity “tears at the moral fabric of the nation,” said U.S. Secretary of Education John B. King Jr. “We will not compromise away the civil right of all students to an excellent education.”

Hosted by Andrew Pulrang, Gregg Beratan, and Alice Wong, #CripTheVote Twitter chats explored various policy issues important to people with disabilities this spring. For our seventh chat, we are delighted to have guest host Talila “TL” Lewis to join us in a conversation about mass incarceration, the legal system, and how they impact people with disabilities. You can find the questions for this chat at the end of this post.

From the American Civil Liberties Union:

America, land of the free, has earned the disturbing distinction of being the world’s leading jailer. Representing just 5 percent of the world’s population, we now hold 25 percent of the world’s inmates. The “tough on crime” politics of the 1980s and 1990s fueled an explosion in incarceration rates.

According to the Prison Policy Initiative:

The American criminal justice system holds more than 2.3 million people in 1,719 state prisons, 102 federal prisons, 942 juvenile correctional facilities, 3,283 local jails, and 79 Indian Country jails as well as in military prisons, immigration detention facilities, civil commitment centers, and prisons in the U.S. territories.