August 30, 2019
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

VOR & YOU: Georgia, again
For several years, VOR has featured articles by Tom Corwin of the Augusta Chronicle on the state of services in Georgia and the tragic consequences of the Department of Justice's effort to close the state's ICFs.
The story continues below.
For those VOR members who clip articles to present to legislators showing the potential for disastrous outcomes that result from closing our facilities, this article makes a powerful argument against those who insist that everyone does better in the community.
Report: Deaths, Lack of Housing Plague Georgia System for Disabled, Mentally Ill

By Tom Corwin, The Augusta Chronicle, August 26, 2019
Georgia claims it is in compliance with a settlement with the federal government to improve the care of those with developmental disabilities and mental illness, but an independent source found their death rate is climbing and that the state still failing to meet its responsibility to house thousands suffering from these disorders.

Earlier this year, the state twice asked the Justice Department to find it had complied with and should be released from a 2010 settlement over its treatment of the developmentally disabled and mentally ill in its care. But in her report to the U.S. District Court filed last week, independent reviewer Elizabeth Jones found a number of areas where the state was lacking and in fact doing worse than in previous years, particularly with the deaths of developmentally disabled patients in community care.

An Augusta Chronicle investigation in 2015 found nearly 1,000 deaths among those patients in community care in both 2013 and 2014, and the state has twice halted moving them from state hospitals into community care over the lack of adequate care among those providers. In its last Annual Mortality Review that covered fiscal year 2017, Jones noted that the death rate has continued to climb each year, from 12.5 per 1,000 in fiscal year 2015 to 16.4 per 1,000 in 2017.

“Perhaps most significantly,” Jones notes, the death rate for those the state has already identified as high risk is anywhere from twice to four times as high.

“Unfortunately, there are still preventable deaths occurring in the State’s system, often the product of substantiated neglect by community provider staff. These deaths reveal that the system is too often unable to meet the needs of people with high-risk conditions.”

Background Checks for Long Term Caregivers:
OIG: States Still Hampered in Implementing Background Checks for Long-Term Care Employees
By Lois A. Bowers, McKnight's Senior Living, August 27, 2018
States continue to be hampered in their ability to fully implement requirements of the National Background Check Program for Long-Term Care Providers, mainly because of a lack of legislative authority for certain program requirements, according to a new report from the Department of Health and Human Services Office of Inspector General.

The OIG evaluated the programs for 11 of the 12 states that concluded program participation between 2017 and 2018: California, Georgia, Kentucky, Maine, Michigan, Minnesota, Nevada, North Carolina, Oklahoma, Utah and West Virginia. Minnesota and West Virginia implemented all 13 selected program
requirements, according to the report, but eight states lacked legislative authority to implement certain requirements of the program.

“We strongly encourage the Centers for Medicare & Medicaid Services (CMS) to implement this open recommendation: take appropriate actions to encourage States to obtain the necessary legislative authority to fully implement Program requirements,” wrote Suzanne Murrin, deputy inspector general for evaluation and inspections.

More than 25,000 Potential LTC Workers Deemed Ineligible through Federal Background Check Program
By Danielle Brown, McKnight's Long Term Care News, August 26, 2019
Long-term care providers in 11 states identified nearly 3% of ineligible job applicants through a national background check program in the past two years. 

The Office of Inspector General, Health and Human Services, recently assessed the participation of 11 states using the National Background Check Program for Long-Term-Care Providers in 2017 and 2018. 

The program is designed to help providers identify job applicants who are ineligible to work in the industry due to state or federal criminal histories, such as healthcare fraud or controlled substance abuse. The OIG found that just two states implemented all of the program requirements. 
A total of 971,039 total background checks were completed, with nearly 25,600 checks resulting in ineligible LTC job applicants.

The report reinforces the need for providers to have access to the National Practitioner Data Bank so they can do immediate vetting.

There was no “evidence of unintended consequences associated with conducting background checks, such as a reduction in the available workforce for long-term-care facilities or providers,” the report stated.

Autism: Conflicting Reports & Views
Opinion: What is Autism? How the Term Became Too Broad to Have Meaning Any More
By Tom Clements, The Guardian, August 26, 2019
The fashion for celebrating ‘neurodiversity’ ignores those with debilitating severe autism, which has created a rift in the community

The word autism means a lot of different things to different people. To some, it conjures an image of the socially awkward eccentric who, besotted by a narrow set of interests, eschews small-talk and large gatherings in favour of solitude. To others, it’s a profoundly life-limiting disorder that consumes every waking hour of a family’s life, a medical disability that entails unpredictable bouts of aggression resulting in torn upholstery, cracked skulls and savage bites. Severely autistic people have a life expectancy of 36 in the United States and 39.5 in Europe, while their parents and care-givers often experience PTSD and stress similar to that of combat veterans. Mildly autistic people, on the other hand, though far more prone to depression and suicide, can go on to lead productive and fulfilling lives, often blending imperceptibly into the wider population despite their idiosyncracies and social difficulties.

Yet a report this week claimed that the difference between people diagnosed with autism and the rest of the population is shrinking. The autism spectrum is so all-encompassing that experts are now finally starting to question the validity of the term itself. After studying the meta-analyses of autism data, Dr Laurent Mottron, a professor at Université de Montréal, concluded that: “The objective difference between people with autism and the general population will disappear in less than 10 years. The definition of autism may get too vague to be meaningful.”
It is hardly unreasonable to think that a spectrum that encompasses an erudite professor such as Dr Temple Grandin – who has authored several books and can speak in entrancing detail about her condition to packed lecture auditoriums – and severely autistic adults in institutions who have to wear nappies due to incontinence and helmets to protect themselves from involuntary self-injury, is so broad so as to be medically meaningless.

Aside from changing diagnostic practices, the general shift in advocacy in the direction of the increasingly fashionable neurodiversity paradigm has led to what I and many others see as the trivialisation of autism. Neurodiversity posits that conditions such as autism, ADHD, dyslexia and dyspraxia are not so much conditions to be treated but differences to be embraced and even celebrated. Despite the noble intentions of many of its proponents, there are those who feel that neurodiversity excludes those for whom autism confers few if any real cognitive advantages.

Despite its claim to be inclusive of all “neurotypes”, its ethos inevitably means that less verbally able autistic people are marginalised from the discussion. Rarely at a neurodiversity event, particularly one that aims to present autism as a competitive advantage in the marketplace, will you find an autistic person with an IQ of lower than 30 who is prone to lashing out and soiling themselves.

Is it Autism? The Line is Being Increasingly Blurred
By Daniel Baril, Université de Montréal News, August 21, 2019
The number of people diagnosed with autism is rising around the world. In the United States, the prevalence of the disorder has grown from 0.05% in 1966 to more than 2% today. In Quebec, the reported prevalence is close to 2% and according to a paper issued by the province’s public health department, the prevalence in Montérégie has increased by 24% annually since 2000.
However, Dr. Laurent Mottron, a professor at Université de Montréal's Department of Psychiatry and a psychiatrist at Hôpital Rivière-des-Prairies of the CIUSSS du Nord-de-l’Île-de-Montréal, has serious reservations about this data. After studying meta-analyses of autism data, his research team found that the differences between people diagnosed with autism and the rest of the population are shrinking.

This study was published today in JAMA Psychiatry, the most prestigious journal in the field of psychiatry. Given the importance of its findings, the study is also the subject of the journal’s editorial.

Dr. Mottron worked with intern Eya-Mist Rødgaard of the University of Copenhagen, along with four other researchers from France, Denmark and Montreal, to review 11 meta-analyses published between 1966 and 2019, that drew data from nearly 23,000 people with an autism diagnosis. The meta-analyses showed that autistic individuals and the rest of the population exhibit significant differences in seven areas: emotion recognition, theory of mind (ability to understand that other
people have their own intentions), cognitive flexibility (ability to transition from one task to another), activity planning, inhibition, evoked brain responses (the nervous system's response to sensory stimulation) and brain volume. Together, these measurements cover some of the basic psychological and neurological components of autism.

Dr. Mottron and his team looked at the effect size—the size of the differences observed between people with autism and people without it—and compared its progression over the years. This measurement is a statistical tool that quantifies the size of difference in a specific characteristic between two groups of participants.

They found that, in each of the assessed areas, the measurable difference between people with autism and people without it has decreased over the past 50 years. In fact, a statistically significant dilution in effect size (ranging from 45% to 80%) was noted in five of these seven areas. The only two measurements that didn’t show significant dilution were inhibition and cognitive flexibility.

Autism Rate Rising Faster Among Some Children, Study Finds
By Shaun Heasley, Disability Scoop, August 30, 2019

New research suggests that the prevalence of autism is on the rise and it’s growing at a significantly faster clip among certain groups of kids.

Between 2007 and 2013, autism rates increased 73 percent among Hispanics and 44 percent among black children ages 3 to 5. At the same time, prevalence rose 25 percent for whites in that age bracket.
The findings come from a study published this month in the Journal of Autism and Developmental Disorders.

“We found that rates among blacks and Hispanics are not only catching up to those of whites — which have historically been higher — but surpassing them,” said Cynthia Nevison of the University of Colorado Boulder who led the study.

Study: Black Students Less Likely to be Identified as Having Disabilities
By Gwen Aviles, NBC News, August 27, 2019
Black and Latino students in the South are less likely to be identified as having learning disabilities when compared to their White peers, according to a study that will be published in a forthcoming issue of Exceptional Children.

The most stark results included the number of Black students who were classified as having a learning disability. Black students who were in 8th grade in 2003 were 71 percent less likely to be identified for learning disabilities than their white peers, whereas black students who were in the 8th grade in 2015 were 55 percent less likely to be classified with a learning disability.

National News:
More States Requiring Insurers To Cover Developmental Disabilities
By Courtney Perkes, Disability Scoop, August 26, 2019
After the widespread success of state insurance mandates for autism treatment, a grassroots effort is underway to do the same for other developmental disabilities.

This summer, Missouri became the third state to pass a law requiring coverage of medically-necessary therapy for all children with developmental disabilities. The effort was spearheaded by Robyn Schelp, president of Missouri Disability Empowerment, whose son has a rare genetic disorder that is treated with speech, physical and occupational therapy.

“Anyone in the disability world understands how important therapy is for development,” Schelp said. “It is awesome that these autism mandates exist, but it’s also important that children with
Down syndrome and cerebral palsy and other disabilities have access to the therapies they need.”

While every state has mandated insurance coverage for autism treatment — which generally grants coverage for applied behavior analysis, or ABA — only a handful of states also include developmental disabilities. New Jersey and Maryland do, and Florida amended its autism mandate to include Down syndrome.

Feds Continue To Tweak Medicaid Waiver Rule
By Michelle Diament, Disability Scoop, August 29, 2019
Federal officials are working to further clarify how they will determine if living arrangements for people with disabilities are considered community-based versus institutional.

Under a 2014 rule from the Centers for Medicare and Medicaid Services, settings must meet certain criteria in order to be paid for through Medicaid home- and community-based services waivers.
To qualify, settings must offer full access to the community, provide privacy, foster independence and allow individuals with disabilities to assert their own preferences about services and providers. The guidelines apply to homes, day and job-training programs and other non-residential offerings.

Medicaid officials issued guidance on the rule in 2016 and again earlier this year, but upon receiving additional questions from stakeholders, the agency is offering up further details in a bulletin issued this month.
The latest guidance focuses on what’s known as the “heightened scrutiny” process, through which states can submit evidence to federal officials showing that a setting which appears to have institutional qualities should in fact be deemed community based.

Initially in the 2016 guidance, CMS said that newly-constructed facilities would need to be operational and serve Medicaid beneficiaries before the agency could determine if it “overcame its institutional presumption.”

State News:
Texas - Family says Woman was Malnourished, Left Alone at Pflugerville Group Home
By Jacqulyn Powell, KXAN-TV, Aug 28, 2019
A woman with Down syndrome is recovering in the hospital after her family members say they found her screaming, soiled and starving in her Pflugerville group home.Shannon Hunt was a resident at Educare in Pflugerville, which is a group home regulated by Texas Health and Human Services.

“It was scary, very scary,” said Shannon’s mother, Dorothy Fischer, of how she and her son, Scott Hunt, found Shannon Sunday when they went to check on her. “It really did a number on us.”

Fischer and Hunt say Educare promises 24-hour care, but they say no caretaker was there Sunday morning when they stopped by.
“I rung the bell, I knocked, I rung the bell and I was just like, ‘I’m going in.’ So I figured I’d check the door first, and it was unlocked,” Hunt said. “I went in and went down the hall and saw her in her room, and she’s lying on the floor in the corner, soiled diaper, lying there and just hollering and holding her stomach.”

Hunt says police spent a while investigating before ever seeing the caretaker.

California - Family Of Man With Intellectual Disability Killed At Costco Speaks Out
By Richard K. De Atley, The Press-Enterprise via Disability Scoop, August 27, 2019

The parents of a man with intellectual disability who was fatally shot by an off-duty Los Angeles police officer and seriously wounded themselves in the Corona Costco two months ago have filed a complaint with the city of Los Angeles, a family lawyer said on Monday.Russell and Paola French spoke publicly for the first time at a news conference in a Corona hotel about the June 14 incident in which their son Kenneth French, 32, died.

They said they pleaded desperately for off-duty Officer Salvador Sanchez, who they say identified himself as a policeman, not to shoot their son after Kenneth either bumped into or struck the officer, who was holding his 18-month-old son at a sample stand in the store.

The mother struggled Monday because of emotions to talk to reporters.

“My husband and I have sustained injuries that have impacted our lives forever,” she said. “Our lives will never be the same. … “I told Officer Sanchez not to shoot twice,” Paola French said. “I even said ‘please.’ I was pleading for my son and our lives, but he was still shot in the back. What threat did I pose to him?”

Russell French, who needed help to stand from his wheelchair to address reporters, said: “I begged and told him not to shoot. I told him we had no guns, and my son was sick.”

Nice Story of the Week:
Chicago Nun Honored for Work Caring for People with Disabilities
By Ravi Baichwal, ABC News, August
There was standing room only in one of the Chicago's biggest ballrooms to celebrate a woman who has devoted 50 years to helping children and adults with disabilities.

Sister Rosemary Connelly has developed the residential and program offerings of Misericordia ever since 1969. Five decades ago, she was named executive director of the local nonprofit that cares for individuals with disabilities.

She's credited as a visionary whose leadership has guided thousands both on and off the Misericordia campus.

"I am overwhelmed about God's goodness to me through his people," the nun said Sunday.
Sister Rosemary has served in the Catholic church for 70 of her 88 years and in that time, she built Misericordia's services and programs to world leading standards.

"I just know that I have been privileged and blessed to share life with God's most vulnerable people and their families and their friends," she said. "I just feel I am overwhelmed."

Sister Rosemary's message that we are all here to serve has changed people's approach to those with disabilities.

VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.
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