December 23, 2020
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

A Christmas Story:
John Hirschauer, a member of the Board of Directors of the Home and School Association of the Southbury Training School shared the following with me earlier today:

My girlfriend is back in Florida with her family for the Christmas holiday. She’s been to Southbury with me before, and visited one of the residents with me before the campus was locked down. 

She told her family about STS when she returned home. Her aunt, who is a high school teacher, was moved after hearing about Southbury, so she decided to have each of her students write a Christmas card for an (anonymous) STS resident. Today, I received these in the mail:
Over 100 cards for the individuals at STS from the kids at Seminole High School in Florida. The family also sent some gifts for the residents. 

I’ll be dropping these off at the administration building tomorrow. 

Hope everyone has a Merry Christmas. Thanks for all that you do!
Coronavirus Update:
A Quick Guide to Statewide Vaccination Plans

Littler Publications is offering a free guide to vaccine plans for each state.

Vaccine approval and administration are the next steps in the fight against COVID-19. As with nearly everything about this pandemic, guidance and action plans vary by jurisdiction, and are constantly evolving. To that end, this chart provides links to state agency websites, vaccine allocation plans, and other guidance related to the rollout of COVID-19 vaccines, as well as basic vaccination plan phases.

This chart is not all-inclusive and does not cover municipalities, some of which have issued their own guidance. Nor does the chart include vaccine provider registration procedures or industry-specific guidance. The purpose of the below information is to give employers a general idea of what vaccine-related actions various jurisdictions are taking.

More Than 2.6 Million People Have Gotten Vaccines: Covid-19 Tracker

The U.S. has given 1.01 million doses of vaccine and Bloomberg has details from 47 states and territories. These free reports are being updated daily.
The first Covid-19 shots have been given to more than 2.6 million people in six countries, according to data collected by Bloomberg. It’s the start of the biggest vaccination campaign in history and one of the largest logistical challenges ever undertaken.

Vaccinations in the U.S. began Dec. 14 with health-care workers, and so far 1.01 million doses have been administered, according to a state-by-state tally by Bloomberg. Those numbers are accelerating as a second vaccine by Moderna Inc. is distributed.
The U.S. is allocating 5.1 million doses of Pfizer and BioNTech’s vaccine and 6 million doses of Moderna’s shot for distribution through this week. Both vaccines require two doses taken several weeks apart. The second doses are being held in reserve until they’re ready to be administered.

VOR's Winter 2020 Campaign
Another year is drawing to an end

Need a last-minute gift for for family or friends?
Give a gift membership to VOR.

It is the season of giving. We give thanks, we give gifts, we give of ourselves.

Won't you help us to provide our gift to those who need it most?
National News:
Money Follows the Person Funding Renewed for Three Years in COVID 19 Stimulus Bill

Money Follows the Person (MFP) has been funded for three years; states that have slowed or shut down their programs will be able to restart or bring them up to speed; the number of days that a person must be in a nursing home or institutional setting before using MFP funds will be 60 instead of 90 days.

The bill does not contain any dedicated FMAP increases for services for people with Intellectual and Developmental Disabilities.

At this writing, the bill is being held by President Trump but is expected to be passed with revisions. Those revisions are unlikely to change either of the above measures.
GAO: Managed Medicaid Programs for LTC Services Need National Oversight
By Maggie Flynn, Skilled Nursing News, December 21, 2020

The U.S. Government Accountability Office (GAO) has found “significant problems” with the managed long-term supports and services (MLTSS) covered by Medicaid and implemented through contracts with managed care organizations. The GAO made the discovery in a recent review of six states.
In the report, which was released publicly on December 16, the GAO recommended a national oversight strategy for MLTSS programs – a recommendation that the Department of Health and Human Services (HHS) did not agree with. The Centers for Medicare & Medicaid Services (CMS), which would monitor such programs, is part of HHS.

“HHS commented that such a step was not necessary, because CMS has strategies to enhance oversight in LTSS and managed care more generally,” the report said. “Our work indicates that relying primarily on a general approach to oversight has not been effective and has allowed significant problems with quality and access in MLTSS to go undetected by CMS and persist for years.”

LTSS includes a range of health care, personal and supportive services and can be provided in institutional settings such as nursing facilities or home- or community-based settings, the GAO noted. LTSS accounts for about a third of total Medicaid spending, according to the report, and a growing number of states have opted to use a managed care delivery model to provide the services.

The number of states with MLTSS programs grew from eight in 2004 to 26 in 2020; under these arrangements, states contract with managed care organizations to provide “a specific set of covered services in return for a fixed periodic payment per beneficiary – typically per member per month.” Under MLTSS arrangements, MCOs are also responsible for care management, which can cover health assessments, care planning and service authorization, among other things.

For its report, the GAO examined three components of MLTSS: the care management provided to MCO beneficiaries, state oversight of MCO care management, and CMS oversight of state implementation of requirements for MLTSS.

To assess state oversight, the GAO reviewed the documentation of state MLTSS monitoring for six states – Arizona, Florida, Iowa, New York, Texas and Virginia – which together served 50% of Medicaid beneficiaries in MLTSS programs in 2018, the most recent year for which data was available. CMS oversight was evaluated through reviewing federal regulations and CMS documents and interviewing agency officials.

The report found that all six states identified “significant problems with MCO care management, though states may not be identifying the full extent of the problems.” Specifically, problems ranged from assessment and care planning compliance to insufficient care coordination.

State News:
Vermont - 'You need to get him out of there': Man with Autism Lived in 6 Facilities in One Year
By Isaac Fornarola, Burlington Free Press, December 16, 2020
It was Christmas, and Linda Luxenberg couldn't wait to spend it with her son Travis in his new home. She had purchased a log cabin in Waitsfield, Vermont and called it Nice Place.There, Linda Luxenberg hoped, her son, who has severe autism, would be safe from the chaos that ran his life for years.

"This boy is going to have Christmas at Nice Place, with his sisters and his mom," she told the Burlington Free Press, part of the USA TODAY Network. She furnished the home and bought her son new clothes. "Trav' was in heaven." But what followed was less than idyllic. 

Linda and Travis Luxenberg were the subjects of a 2019 Free Press series that documented their struggle to find adequate housing and programming. Travis Luxenberg, 33, was in a dangerous home care program with caregivers who could not — or would not — stop him from destructive behaviors or make sure he didn't wander on his own.

As reporting for that series was underway, Linda Luxenberg learned that the state of Vermont had approved over $500,000 for a new program with
Upper Valley Services, a nonprofit service agency accredited by the state. It was to be designed specifically around his needs, and would provide at least two caregivers at all times, an autism specialist and improved security measures. 

The Free Press series ended with Linda Luxenburg hopeful that the new program would support her son's needs, but that optimism was short-lived.

Travis Luxenberg's program fell apart within months, despite a nearly 270% increase in state and federal funding. The program failed, Linda Luxenberg said, because of a lack of programming devised by an autism expert and the inability to find staff to implement it.

Including Nice Place, Travis Luxenberg has lived in six different facilities in one year.

Oregon Hospitals Didn't Have Shortages. So Why Were Disabled People Denied Care?
By Joseph Shapiro, NPR, December 21, 2020
At the start of the coronavirus pandemic, a small group of disability rights advocates found itself in a race against time to save the life of a woman with an intellectual disability.

The woman was taken to the hospital with COVID-19. But the hospital, in a small Oregon town, denied the ventilator she needed. Instead, a doctor, citing her "low quality of life," wanted her to sign a legal form to allow the hospital to deny her care.

Out of that quiet fight in early spring, the advocates — staff at a disability rights legal group, a state lawmaker and a few others — discovered something disturbing: There were many cases in Oregon of health care being rationed to people with disabilities.

At the same moment, across the United States, disability groups and even a civil rights office of the U.S. government were raising a similar warning: that behind closed doors, people with disabilities, as well as elderly people, were in danger of being denied health care.

NPR was looking for cases, too, and heard about the woman in Pendleton while she was in the hospital.

There's no reason that these examples would occur more frequently in Oregon than in other states. But the fight for that anonymous woman with an intellectual disability peeled back the curtain on health care decision-making in Oregon in a way that did not happen in other states.
That activism led to change in Oregon — including anti-discrimination legislation and new statewide policies.

It was late March when the woman with an intellectual disability contracted COVID-19. She struggled to breathe.

In the hospital, a medical provider wrote do-not-resuscitate (DNR) and do-not-intubate orders for the woman. Those are medical instructions to health care providers to withhold potentially painful interventions, like a ventilator or CPR, if a patient stops breathing or the patient's heart stops. The woman was alone in the hospital and did not understand what the doctor and medical staff wanted her to agree to.

In addition, the hospital staff sent word to the woman's group home: Fill out DNRs in advance for your other residents, in case one of them comes to the hospital.

People who worked with the woman were angry that the doctor and the hospital seemed to be discounting the lives of people with disabilities.

Pennsylvania - Opinion: Protecting All
By Patty J. Fike, Pittsburgh Post-Gazette, December 20, 2020
The writer is a board member of Polk Center Strong for family, staff and community liaisons
This letter is in response to the Dec. 1 letter “A Much-Needed Transition During the Pandemic.”
The letter states, “In Pennsylvania, we know that thousands of people with developmental disabilities still remain warehoused in institutions.”

That is not true: In the four state centers across the Pennsylvania, 700 individuals live lives of dignity and purpose living in small cottages in a campus setting in a community of relationships that sustain and nourish in a place they know and trust.

These centers are their homes! They live there and live full and very satisfying lives. Their homes are stable, clean, comfortable, closely regulated and are decorated with personalized interests.

There is a person-centered core, an active interfaith chaplaincy, multiple off-campus
opportunities, as well as a fully operational vocational program across a wide range of ability — 167 individuals at Polk Center are employed at 261 jobs and some have more than one job. This is an 86% employment rate.

The first mission of the state centers is to protect and defend Pennsylvania’s most vulnerable citizens, and now during this time of COVID-19 the staff are hypervigilant.

The union workforce serves Pennsylvania proudly, and the centers have won praise and gratitude from members of the Pennsylvania General Assembly.

International News:
Australia - Abuse, Neglect and Violence: Report Lays Bare Misery in some Victorian Group Homes
By Zach Hope, The Age, December 21, 2020
Victoria's most vulnerable people continue to face wretched conditions in privately run group homes, in some cases rife with sexual assault and abuse, despite repeated warnings to the state government and calls for reform.

Volunteers visiting premises have found instances of medication mismanagement and residents living with bedbugs, soiled sheets, untreated wounds and, in one case, a litter of cats roaming in a food preparation area.

The Community Visitors annual report, published by the Office of the Public Advocate, documented three allegations of resident-on-resident rape in supported residential services last financial year and other allegations of sexual abuse and harassment, some of which have led to police action.

Community visitors are empowered by legislation to inspect supported residential services, disability and mental health facilities unannounced.

They discovered 669 abuse-related issues, an increase of 36 per cent from the previous year. They also fear what has been missed since the coronavirus pandemic ended in-person visits.

The catalogue of failures is longest in supported residential services, which in 124 facilities across the state house more than 5000 mostly elderly Victorians who are not suited for nursing homes, or do not necessarily meet the thresholds for disability or mental health facilities. The staff-to-resident ratio in these facilities is typically one to 30.

The annual report "notes with disappointment" that the Andrews government did not respond to last year's list of recommendations. It also questioned the thoroughness of the Department of Health and Human Services investigations into some serious incidents.

Public Advocate Dr Colleen Pearce has called for a new independent safeguarding body to protect residents, saying supported homes have long-standing issues of "abuse, violence, safety and neglect".

Direct Support Professionals:
Pandemic Helpline For Caregivers of People With IDD

As the COVID-19 pandemic wears on, a new 24-hour support line is working to help individuals with developmental disabilities and those who care for them cope during this tough time.

Known as Project Connect, the telehealth line is free and available anytime for people with disabilities, their families, caregivers and other members of their support teams across the nation.

Project Connect is available by calling 888-847-3209.
Shopping for the Holidays at Amazon?
Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to instead of the regular site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmark Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
VOR Bill Watch:
Click on blue link to view information about the bill


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. 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. 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. 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.


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. 

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