#AutisticWhileBlack: The Terrifying Case of Rebecca X

https://goo.gl/hvouEy

It was 25 degrees outside that Tuesday, January 9th, 2018. Psychotherapist Imamu Baraka was leaving his office across the street when he saw staff from University of Maryland Medical Center Midtown in the process of dumping a woman at a bus stop in only a hospital gown and socks. Furious, he began recording the event on his cell phone, called 911, made certain the woman was re-admitted to the ER and concerned no one would believe him, uploaded the video. The frightening footage, evidence of a heinous practice called "patient dumping" went viral.

A week before, Cheryl Chandler had reported her 22-year-old daughter, Rebecca X, missing.  Six years ago, Rebecca had been diagnosed with Asperger's and a psychiatric disability.  She had been placed in a group home in Charles County, MD, but later evicted from it on the excuse that she refused to take her medication. Her family enrolled her in what they were told was an intensive inpatient treatment program. How Rebecca went missing from there is not clearly understood.

Her mother was browsing the Internet when she happened upon the trending video and played it. She doesn't remember what happened after the moment she recognized the young woman in the hospital gown on the street was Rebecca. According to family members, she screamed her anguish. Ms. Chandler immediately called the medical center demanding to know the location of her daughter but they refused to tell her. Finally after calling them, the police were able to locate Rebecca at a homeless shelter.

During a press conference in Rebecca's attorney's offices, unable to hold back tears, Rebecca's twin sister Rosslyn read a letter from Rebecca, thanking everyone for their help, telling everyone she was safe. Ms. Chandler was adamant that Rebecca was not homeless or uninsured, and was very much loved. It was Ms. Chandler who had hired an attorney for Rebecca.


Deadline Extended: NCIL Needs Your Help Documenting the Impact of Electronic Visit Verification!

https://goo.gl/pAZieN

When the 21st Century CURES Act passed into law late last year, it included a provision requiring states to implement Electronic Visit Verification (EVV) systems. EVV systems vary by state, but they all entail electronic monitoring of personal care attendants (PCAs), home health care workers, and the consumers they work for.

Prior to its passage into law, NCIL released a statement of opposition to EVV, and we continue to strongly oppose it. EVV is discriminatory, and it undermines consumer direction – a key tenet of the Independent Living Movement. EVV is a violation of the privacy of people with disabilities who use PCA and home health services. On top of that, it is expensive, burdensome, and less effective than traditional methods.

We have heard from people with disabilities around the country who are already beginning to feel the negative impact of this requirement. NCIL is committed to considering all available options to fight this harmful law, and in order to do so, we need your help!

Please share your experiences with us. Please answer the questions below, and share any other relevant information, by Friday, January 12, 2018. Send your responses to Lindsay Baran at lindsay@ncil.org.


'Pharmacy deserts' a growing health concern in Chicago, experts, residents say

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ven if she wanted to, Chatham resident Emma Washington, 77, cannot skip going to the pharmacy — she relies on 12 medications to stay alive. Most are for the high blood pressure she’s had since she was 19, she said, others for her worsening kidney condition and diabetes. She typically visits the pharmacy at least three times every month, as she said her insurance does not often cover refills for all of the medicines she needs in one trip.

This task was less taxing when her pharmacy, the now-closed Walgreens at 95th Street and King Drive, was roughly 10 minutes from her home on the No. 3 bus. Then, she could even walk there, if the weather was nice. Now, she must set aside close to a half hour to get to the one at 86th Street and Cottage Grove Avenue. She takes two buses to get there.

With winter underway, Washington said she worries about how ice and snow might complicate her commute.

“Am I supposed to travel in that or wait until my daughter has a day off — if she has a day off — to get my medicine?” she asked.

Growing portions of Chatham and more than a dozen other poor Chicago neighborhoods, mostly on the city’s South and West sides, are becoming “pharmacy deserts,” say some public health experts. The term describes a community with limited access to a pharmacy, whether retail or independent. Hospital inpatient pharmacies are not typically included in these counts, as they dispense medicine only to hospitalized patients.

In Chicago, research has shown most of these neighborhoods share a mix of characteristics: Their residents tend to be low-income, immigrants, and/or black and Latino. And, experts argue, given the widening scope of services many pharmacies are providing, including physicals, immunizations, drug counseling, sexually transmitted infection screening and other laboratory testing — even access to naloxone, the medication used to reverse opioid overdose — pharmacies are increasingly important pieces of the national conversation around health care, especially where health inequity already exists.

“A lot of public attention focuses on insurance, but that’s not enough,” said Dima Qato, an assistant professor in the department of pharmacy systems, outcomes and policy at the University of Illinois at Chicago, who has studied pharmacy access for years. “Even if medications are affordable, if the pharmacy isn’t accessible, they're not accessible.”

In a study published in the medical journal Health Affairs in 2014, Qato and other researchers examined pharmacy access in Chicago neighborhoods from 2000 to 2012, finding that throughout the period the number of pharmacies was lower in minority communities than in white ones. Now, Qato is involved in a three-year program to further this research and develop solutions for growing pharmacy deserts in the city.

According to her preliminary reporting through 2015, some residents of five community areas — Chatham, Pullman, South Deering, and West Pullman on the South, Far South and Southeast sides and Chicago Lawn on the Southwest Side — lived at least 1 mile from the closest pharmacy.


Preschoolers With Disabilities Inordinately Suspended, Report Finds

https://goo.gl/w4C6Vu

Students with disabilities represent just 13 percent of the nation’s preschoolers, but a new report finds they account for three-quarters of all suspensions and expulsions.

The figures come from an analysis out this month from the Center for American Progress. Researchers looked at data from the 2016 National Survey of Children’s Health, a regular government poll of parents across the country about their kids’ physical and mental health.

Parents surveyed were asked if their child had a current diagnosis of various medical or behavioral conditions and if their child had been asked to stay home from or no longer attend child care or preschool anytime within the previous year because of behavior issues.

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Kids ages 3 to 5 with behavioral problems were 43 times more likely to be suspended or expelled than their typically-developing peers, the report found. The odds were 10 times greater for those with autism and 7.5 times higher for children with developmental delays.

“Children with disabilities and children of color — many of whom come from low-income families — have the most to gain from high quality preschool and k-12 education, and yet the most to lose. Expelling or suspending children who are most in need of high-quality, supportive learning undermines education’s role as the great equalizer and will only worsen existing disparities,” said Winnie Stachelberg of the Center for American Progress.


Survival Still Relatively Poor for In-Hospital Cardiac Arrest During Nights, Weekends

The message is clear. Have your heart attack during normal work hours and on a weekday. After all, we can't really expect huge health systems to change just because it would be good for their so-called customers.....

https://goo.gl/Mo1ztv

Gains in acute resuscitation survival for night and weekend in-hospital cardiac arrest (IHCA) are visible, but not enough to narrow the gap between off-hours and on-hours survival to discharge, a study found.

In 2000-2014, survival to hospital discharge was 16.8% for those presenting during off-hours versus 20.6% during on-hours (P<0.0001), according to Uchenna Ofoma, MD, MS, of Geisinger Health System in Danville, PA, and collaborators of the the American Heart Association Get With the Guidelines-Resuscitation (GWTG-R) investigators.

Over the years, survival to discharge improved for both on-hours (16.0% in 2000 to 25.2% in 2014, P<0.001) and off-hours IHCA (11.9% to 21.9%, P<0.001), but the difference between groups persisted, the authors reported online in the Journal of the American College of Cardiology.

A closer look at when mortality occurred suggested that the difference was not apparent during acute resuscitation, when survival off-hours was comparable to that during on-hours. Instead, the post-resuscitation period was where the disadvantage lay for night and weekend cardiac arrests.