March 13, 2020
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's 2020 Annual Meeting & Legislative Initiative

 Hyatt Regency Capitol Hill
Washington, D.C.
June 6 - 10
VOR Members:
$80 per member if paid by April 5, 2020
$100 per member if paid by May 3, 2020
$120 per member if paid after May 4, 2020

Non-Members - Registration fee includes 1-Year Membership
$110 per person if paid by April 5, 2020
$135 per person if paid by May 3, 2020
$160 per person if paid after May 4, 2020


Note: If the conference is canceled due to the Coronavirus pandemic,
all registration fees will be refunded
HOTEL INFORMATION
Hyatt Regency Capitol Hill     
400 New Jersey Ave, NW    Washington, D.C.    20001

We have a bloc of rooms available for conference attendees.
The VOR Group rate is $229 for single or double rooms, plus tax, per night.
Larger rooms & suites are also available.

To make your reservations online, go to:
 
If you do not have internet access, call 1-800-233-1234 and mention “VOR’s Annual Conference” when making your reservation.


Need a roommate for the conference?
Contact us at [email protected] and we will try to help!
VOR and YOU:
Update on the Coronavirus

“The highest risk is for elderly population with underlying health conditions. The elderly population must be very, very careful. In particular, we are strongly advising that nursing homes for the elderly suspend all medically unnecessary visits.”
 - President Trump, Oval Office Address, March 11, 2020

Those who advocate for people with severe and profound intellectual and developmental disabilities must now reckon with a hard truth. The new Coronavirus pandemic, on the increase nationwide, represents an unprecedented existential threat not only to older folks, and those with underlying conditions like heart and lung disease and diabetes, but also to many of the vulnerable souls who are our family members, friends and wards.
 
An Intermediate Care Facility is not a nursing home, nor is a community residential setting (or family home) a health care facility. But the very factors that render people with ID/Ds so vulnerable to other communicable respiratory infections, like the flu, strongly suggest that if the new disease COVID-19 reaches them, there may well be bleak outcomes analogous to some nursing homes’ recent experiences. Those factors include the how the disabilities manifest and affect the people who have them, comorbidities, additional medical conditions and organismic fragility they may have, and, yes, realties born of residential circumstance. And those predisposing factors often appear, and work, in combination.
 
This plain truth about our loved ones’ higher risk is reflected in the rapid promulgation of new rules and institution of new protocols and procedures intended to try to protect people with ID/Ds from the SARS-CoV-2 virus, that now sometimes change daily. One such rule and procedure, already in effect in some locales, is discouragement and even outright barring of visitors, including family members.
 
It behooves us all to learn all we can about this new and all-too-real threat. We must best prepare ourselves and our loved ones, as best we can, to cope with all aspects of this pandemic, including prevention, control, and care for the sick. The articles included here are intended only as a jumping-off point, not as syllabus, for standing by our loved ones with ID/Ds in the face of COVID-19.

 


 
 

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It’s important to note that we are not helpless in light of current news events. We can always choose our response. Here are some things you can do to take care of your mental health in the face of uncertainty:

  1. Separate what is in your control from what is not. There are things you can do, and it’s helpful to focus on those. Wash your hands. Remind others to wash theirs. Take your vitamins. Limit your consumption of news (Do you really need to know what is happening on a cruise ship you aren’t on?).
  2. Do what helps you feel a sense of safety. This will be different for everyone, and it’s important not to compare yourself to others. It’s ok if you’ve decided what makes you feel safe is to limit attendance of large social events, but make sure you separate when you are isolating based on potential for sickness versus isolating because it’s part of depression.
  3. Get outside in nature–even if you are avoiding crowds. I took a walk yesterday afternoon in my neighborhood with my daughter. The sun was shining, we got our dose of vitamin D, and it felt good to both get some fresh air and quality time together.  Exercise also helps both your physical and mental health.
  4. Challenge yourself to stay in the present. Perhaps your worry is compounding—you are not only thinking about what is currently happening, but also projecting into the future. When you find yourself worrying about something that hasn’t happened, gently bring yourself back to the present moment. Notice the sights, sounds, tastes and other sensory experiences in your immediate moment and name them. Engaging in mindfulness activities is one way to help stay grounded when things feel beyond your control.
  5. Stay connected and reach out if you need more support. Talk to trusted friends about what you are feeling. If you are feeling particularly anxious or if you are struggling with your mental health, it’s okay to reach out to a mental health professional for support. You don’t have to be alone with your worry and it can be comforting to share what you are experiencing with those trained to help.
March is Developmental Disabilities Awareness Month
In Memoriam:
Brigadier General (Ret) William F. Sherman
Sep 12, 1937 - Mar 11th, 2020

We are saddened to hear of the passing of another long-time member of VOR, Bill Sherman, of Arkansas.

Bill, who practiced law for 53 years in Little Rock, died Wednesday in Nashville, Tennessee at Barton House Memory Center. 
Bill had a rich and varied career as an attorney, public servant (Assistant U.S. Attorney, Arkansas Securities Commissioner, State Representative, Member of State Constitutional Convention), and as a 32-year service member of the U.S. Army’s Reserve and National Guard. He served as special assistant to the Judge Advocate General of the Army, holding the rank of brigadier general from 1987 until 1990. 

Bill was also a tireless public advocate for individuals with cognitive and developmental disabilities, including his son, John. With his wife, Carole, he was greatly influenced and informed by John, who from birth has lived with profound cognitive disabilities. During his career, Bill worked with parents and guardians to protect the homes and services for persons with cognitive and developmental disabilities in Arkansas and throughout the country.

A visitation will be held from 5 to 6:30 pm on Friday March 13, at First United Methodist Church, Fellowship Hall. The funeral will take place on Saturday, March 14, at 10 am, First United Methodist Church. Services will be live streamed at https://fumclr.org/watch-live

National News :
Autism Parents May Be At Risk For PTSD
By Michelle Diament, Disability Scoop, March 10, 2020
Nearly 1 in 5 parents of kids with autism who participated in a new study had enough symptoms of post-traumatic stress disorder to qualify for a provisional diagnosis.

The study, which included hundreds of parents of children who are on the spectrum, found that 18.6 percent met criteria for PTSD.

The symptoms were more likely in parents whose kids displayed challenging behaviors like physical aggression and self-harm, according to findings published recently in the journal Research in Autism Spectrum Disorders.

Ali Schnabel of Deakin University in Australia who worked on the study said that it’s hard to say if the findings would extend across all parents of kids
with autism, particularly given how varied the spectrum is. She noted that the study looked overwhelmingly at mothers — who accounted for 96 percent of participants — and that fathers may experience things differently.

Nonetheless, she called the idea that PTSD was three times higher among the parents of children with autism studied compared to other parents “quite alarming.”

2019 Annual Report to Congress on the Individuals with Disabilities Education Act (IDEA) is Available Now

This is the 41st Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2019. Section 664(d) of the Individuals with Disabilities Education Act (IDEA), as reauthorized in 2004, requires that the Department of Education report annually on the progress made toward the provision of a free appropriate public education to all children with disabilities and the provision of early intervention services to infants and toddlers with disabilities.

The 41st Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2019 describes our nation’s progress in:
  1. providing a free appropriate public education (FAPE) for children with disabilities under IDEA, Part B and early intervention services to infants and toddlers with disabilities and their families under IDEA, Part C,
  2. ensuring that the rights of these children with disabilities and their parents are protected,
  3. assisting states and localities in providing for the education of all children with disabilities, and
  4. assessing the effectiveness of efforts to educate children with disabilities.
The report focuses on the children and students with disabilities being served under IDEA, Parts C or B, nationally and at the state level.
International News - United Kingdom: New Study to Promote Including People with Complex Needs in Research

Autistic people with learning disabilities and complex needs for support are underrepresented in research. There is an urgent need to change this.

This project will develop practical advice and new research tools to increase the amount of research focusing on autistic people with complex needs. The research team will collaborate with the autism community. The project will create an online resource called the Complex Needs Research and Development hub (COMRAD). COMRAD will provide advice and resources for researchers on how to include autistic individuals with complex needs in research.

In our review of UK research funding, we highlighted a lack of research in autistic people who have many conditions including intellectual disabilities. This group is sometimes referred to as having complex needs. We set up our Complex Needs Study Group to make a plan to change things. This group is made up of research experts, healthcare professionals, autistic people and parents of those with complex needs. This group have identified common reasons why research projects haven't included autistic people with complex needs. They designed this research project to put things right.

Report: ‘It’s Time to Care’ About Direct Care Workers
PHI, Press Release, January 21, 2020

According to a new report released today by PHI, direct care workers are critical to the lives of millions of Americans, yet the persistent job-related barriers they face threaten the future of this sector.In fact, new data on future demand for these workers shows that from 2018 to 2028, the direct care workforce will add 1.3 million jobs, and an additional 6.9 million jobs will become vacant as existing workers leave the field or exit the labor force. PHI’s new report argues that “it’s time to care” about these workers and their jobs.
It’s Time to Care: A Detailed Profile of America’s Direct Care Workforce provides a detailed overview of the direct care workforce (including key concepts and definitions), an analysis of how this role has evolved, and a statistical profile of the workforce with key demographics, socio-economic characteristics, and employment projections.

Direct care workers—formally classified as personal care aides, home health aides, and nursing assistants, but known in the field by a much broader array of job titles—provide assistance with activities of daily living (ADLs) and instrumental activities of daily living (IADLs) across care settings.
“Direct care workers are a lifeline to millions of older people, people with disabilities, and their families, and this report emphasizes why we must focus our attention on these workers and make a large-scale investment that improves their jobs and elevates their value in the healthcare system,” said Jodi M. Sturgeon, president of PHI, a national research and consulting organization widely considered the leading expert on the direct care workforce.

  • Every day, nearly 4.5 million direct care workers support older adults and people with disabilities across the United States.

  • The direct care workforce is predominantly female (86 percent), and the majority of direct care workers (59 percent) are people of color.

  • According to the most recent data from the Bureau of Labor Statistics, the median wage for all direct care workers is $12.27 per hour and—due to high rates of part-time employment as well as low wages—median annual earnings are just $20,200.

  • Fifteen percent of direct care workers live in poverty (defined as living below 100 percent of the federal poverty level), while 44 percent live in low-income households (meaning below 200 percent of the poverty line).

  • Although there is no reliable national figure on turnover in the direct care workforce, turnover has generally been reported at 40 to 60 percent or higher.
VOR ❤️ OUR DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at


with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
State News:
Minnesota - More than 1,000 Activists Demand Better Wages, Conditions for Disability Caregivers from Minn. Legislature
By Sarah Mearhoff, Post Bulletin, March 10, 2020
Over 1,000 advocates piled into the Minnesota Capitol Rotunda in St. Paul on Tuesday, March 10, urging lawmakers to improve wages and conditions to caregivers of Minnesotans with disabilities.

According to the Association of Residential Resources in Minnesota, direct support professionals, or DSPs for short, on average earn $13.15 an hour — 17% less than workers in professions of similar caliber. Half of DSPs leave the field within their first year on the job, and the profession has among the highest vacancy rates in the state. The Minnesota Legislature in 2019 passed a wage increase for DSPs of 4.7% on average, but ARRM CEO Sue Schettle said it's still not enough.
She said DSPs provide critical care to those with disabilities — dispensing medication, assisting with personal hygiene tasks, offering reliable transportation and more — but their profession "is one that doesn't get the limelight."

"In some cases it’s life or death," Schettle said. "And yet, they’re making 13 bucks an hour."

Tuesday's rally was meant to highlight the care that DSPs offer, and ask the Legislature for additional reform. ARRM is pushing four bills this year to increase DSP wages and improve industry conditions.

New Jersey - His Reality Is a Mock Village Where Everybody Knows Him
By Sarah Maslin Nir, New York Times, March 9, 2020
A complex in Livingston, N.J., is designed to help people with disabilities practice everyday activities like banking or shopping.

The commotion began just as the teenage boy was to pay for his apple juice. He flapped his hands wildly, tugged at the noise-canceling headphones atop his brown curls and then turned to his mother to deliver a head butt.

The supermarket cashier stood quietly, her smile unwavering as she patiently waited for the boy’s mood to stabilize.

Kenneth Kaufman, 15, has autism, and is something of a regular here in this small grocery store inside LifeTown, a 53,000-square-foot complex dedicated to helping people with autism and other physical and intellectual disabilities to deal with everyday activities.

Roughly a quarter of the space is occupied by a mock village of 15 storefronts, including a “bank” where arriving visitors withdraw $12 to use to buy snacks at a mini ShopRite grocery, or get their nails done at a beauty parlor called Linda’s Salon.
The ShopRite clerk, like other workers in the village, was a trained volunteer who knew that Kenneth, like many with autism, could be exuberant one moment, violent the next, and often sensitive to sounds.
Soon enough, Kenneth calmed down. The clerk took his outstretched dollar and helped him poke a straw into the juice box.

“In any other place, you scream, you jump, you head-butt on occasion, and you will never be accepted there again,” said his mother, Ella Kaufman, a management consultant from Montclair.

She has been bringing her son, who goes by the nickname Kesha, and his sibling, both of whom have autism, to the center since it opened in September. There they try things like shopping, making appointments at a simulated dentist’s office or navigating stoplights and crosswalks on 146 feet of a simulated city street.

“The ability to learn new things is great,” said Ms. Kaufman, as Kesha bounded out of ShopRite toward the movie theater’s old-fashioned marquee. “But the ability to not be an outsider is the biggest thing.

“Here,” she said, “you are accepted.”

West Virginia - Lawmakers OK Budget on Last Day of Session
Anthony Izaguirre, Associated Press via Connecticut Post, March 7, 2020
West Virginia lawmakers approved a state budget Saturday, the final day of the legislative session.The $4.6 billion budget was overwhelmingly approved by both the Senate and House of Delegates, where lawmakers largely spent the last day of the 60-day session backslapping and putting the final touches on last-minute bills.

One of the more high-profile spending lines in the budget was funding to eliminate the wait list for a program that provides at-home care for intellectually disabled people. Republican Gov. Jim Justice had prioritized ending the wait list for the
Intellectual Developmental Disabilities Waiver program, saying there are more than 1,000 people waiting for the service.

“I commend you in every way,” Justice told senators. "You have done so much good and helped so many people and so many families."

Ohio - Opinion: Group Should Get Behind Intermediate Care Facilities
By Caroline Lahrmann, Columbus Dispatch, March 6, 2020

I wish to provide further context to the Feb. 23 Dispatch article “New Group to Help Crime Victims with Disabilities.”

Adult Advocacy Centers will provide disability-specific, facility-based treatment and programming to victims of crime with intellectual and developmental disabilities.

Disability Rights Ohio is a driver behind the program with former DRO employees staffing much of its leadership. However, DRO attacks other DD programs for being disability-specific and facility-based, even bringing lawsuits against the state to remove funding from them.

One such program unfairly attacked by DRO is the intermediate care facility for individuals with intellectual disability.

The state has agreed to pay $1.8 million in attorney’s fees to DRO and tens of millions more for other provisions to settle DRO’s lawsuit that attacks ICFs. Simultaneously, the state and DRO set up a new type of disability-specific, facility-based setting. The irony is striking, and for individuals with intellectual and developmental disabilities harmed by DRO’s attacks, very sad.

Georgia - Lawsuit Claims Student With Special Needs Was Stripped Naked, Raped On Bus
By Shaddi Abusaid, The Atlanta Journal-Constitution via Disability Scoop, March 10, 2020

The family of a Fulton County Schools student with special needs has filed a lawsuit against the district alleging their child was repeatedly sexually assaulted and eventually raped on her school bus.According to the lawsuit, the alleged abuse took place over a 17-day period last April while the 14-year-old girl was driven to and from her middle school.

Lee Parks, the girl’s attorney, called the abuse “horrific” and said at least two other students removed the girl’s clothes and forced her to perform sex acts.

The assaults, he said, took place in three or four rows of the small bus for students with special needs.
“The abuse was allowed to continue until it culminated in the rape of the victim, during which she was stripped naked by the perpetrator,” Parks said. “It was only then the bus driver finally reported that ‘he had noticed something’ on the bus without noting the sexual abuse specifically.”

The student, identified only as “Jane Doe” in the federal lawsuit, has mental and physical disabilities, and functions at a “cognitive and communicative level far below her actual age.”

The lawsuit claims the abuse began shortly after Fulton County Schools removed a bus monitor from the route, leaving the students with only the driver.


What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
Another Way To Donate
Over the years, VOR members have suggested that donations be made in memory of loved ones with I/DD or their family members, or to honor a member of their community who have helped in the struggle to support services for people with I/DD.

If you are interested in setting up a memorial or a tribute, please use the form on our website. This will ensure that both the donor and person setting up the donations will be notified accordingly.
VOR Bill Watch:
Click on blue link to view information about the bill

VOR OPPOSES:

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. 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.

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.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.

H.R. 1342 & S. 548 The Empower Care Act - A Bill to reauthorize Money Follows the Person extension through FY 2023 .


VOR SUPPORTS:

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. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 6045 & S. 3669 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
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