January 8, 2021
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

We would like to thank our members and donors for their generous support and the contributions they made to VOR during our
2020 Fall/Winter Fundraising Campaign.
Our families are forever grateful.
Coronavirus Vaccine Update:
Note: The use of the term "Long-term care facilities" in this and other articles tends to lump together Nursing Homes for the elderly with Skilled Nursing Facilties and public and private Intermediate Care Facilties. Depending on the author, this may or may not include group homes. It is not always clear in the article which facilities are being counted.

Nonetheless, whatever measures are being taken or not being taken for the aging population may indicate what is or is not being done for people with I/DD.
COVID-19 Vaccine May Not Get To Long-Term Care Facilities Quickly Enough
By Will Stone, NPR, January 5, 2021
Even as the first doses of vaccine arrive in nursing homes and assisted living communities, the COVID-19 death toll among residents and staff of these facilities continues climbing to staggering heights, with the final month of 2020 proving to be the deadliest of the pandemic for long-term care.
There were more than 5,600 deaths linked to long-term care in the last week of December.

Long-term care facilities — places that care for the most vulnerable, high-risk populations — now account for close to 40% of all U.S. deaths due to the virus.

"It is an American tragedy," said Elaine Ryan, vice president for state advocacy and strategy at AARP. "The states need to redouble their efforts to make sure that vaccines are being administered as quickly as possible."
Only about 14% of the first shots distributed to long-term care facilities have gone into someone's arms via the federal pharmacy partnership, according to data from the Centers for Disease Control and Prevention.

CDC Adds Down Syndrome To COVID-19 ‘Increased Risk’ List
By Michelle Diament, Disability Scoop, January 7, 2021

The Centers for Disease Control and Prevention is acknowledging for the first time that COVID-19 poses an especially high risk for people with Down syndrome.

The federal agency updated its list of conditions that carry an “increased risk of severe illness from the virus that causes COVID-19” in late December to include Down syndrome.

“Severe illness from COVID-19 is defined as hospitalization, admission to the ICU, intubation or mechanical ventilation, or death,” the CDC said.

That makes Down syndrome one of a dozen conditions — including cancer, chronic kidney disease, obesity and pregnancy — that the CDC specifically warns have been linked to an increased risk from the virus.

The U.S. has administered 6.25 million doses. More Than 17.5 Million People Have Gotten Vaccines Worldwide: Bloomberg Covid-19 Tracker

A Quick Guide to Statewide Vaccination Plans
Littler Publications is offering a free guide to vaccine plans for each state.

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 a general idea of what vaccine-related actions various jurisdictions are taking.

Vocational Centers and 14(c) Wage Certificates:
By Ted Schwartz, National Council on Severe Autism, January 4, 2021

As the “disability rights” movement pursues the cruel elimination of non-competitive employment programs for the severely disabled, a father makes it clear: we cannot allow this economic and humanitarian disaster to occur.

The following is from a letter to Norman Lorentz, Board Chair or SourceAmerica
I am a Pennsylvania Trial Lawyer and Past President of the Pennsylvania Trial Lawyers Association (now PAAJ), and Past Governor of the Association of Trial Lawyers of America (now AAJ). More relevantly, I am the father of Scott Schwartz, now 44 years old and one of the first individuals diagnosed with Fragile X Syndrome, a genetically inherited form of mental retardation which rivals Downs as the most prevalent ID cause worldwide.

Scott graduated from his Special Needs School 23 years ago and tried competitive employment unsuccessfully … on 5 different occasions. He has thrived in his Work Center, Associated Production Services, for 22 consecutive years. His annual ISP has carefully studied his progress, or lack thereof, and each time concluded that a Work Center would be the optimum place for him vocationally. AT NO TIME WAS A RECOMMENDATION MADE FOR SCOTT TO ENTER COMPETITIVE EMPLOYMENT.

There are tens of thousands of Scotts around the United States, who are happy and content with their employment in a Work Center. In addition, Moms and Dads of these thousands of individuals, in addition to the other everyday stresses that they are currently undergoing, are Extremely Anxious over the above two bills which, if enacted, would basically put Work Centers out of business. Permit me, then, to put up a mirror in front of you and provide you with a Point by Point scenario of the Economic, Psychological and Spiritual Chaos the passage of this legislation would cause to each and every family unit of an ID individual if Section 14 (c) of the Fair Labor Standards Act were repealed by the passage of the above bills.

1. ID individuals at Work Centers (formerly called Sheltered Workshops) get paid by piecework. They stuff soda boxes, they place cough drop bags in boxes, they screw tabs into S hooks, and so on. The Work Centers simply cannot afford to pay these workers minimum wage. Moreover, it is NOT about the money for these workers. It is about pride, accomplishment and self esteem, the ability to get up in the morning, go to work, and then come home and brag that they accomplished something that day.

2. If 14 (c) is enacted, WC's will not be able to pay minimum wage because of their revenue stream, and will go out of business. This is a Given.

3. ID individuals who formerly worked in this setting will be forced either to sit at home or to work in some menial job in the Community, with or without a job coach, for a couple of hours each day. Then they will be transported back home after 2 or 3 hours of work for the rest of the day.

4. Since in many cases, these ID people are not able to care for themselves, who will take care of them, feed them and give them medication while Mom and Dad are earning a living to keep the family afloat? The proposed Legislation does not answer that question. It never will.

5. In the above event, one of two scenarios will occur: First, Mom or Dad or both will have to quit their job to take care of their child, or they will continue to work and hire a worker to care for the ID person. Either way will cause economic disaster to the family, and eventually to the States in the form of Welfare payments. Have you thought through all of these ramifications before you made your endorsement of the repeal of 14 (c)? I bet not.

Instead, in your letter to your Board of Directors, you provide so-called "reasoning" for your decision. Let us examine these reasons, point by point:
“You presume that EVERY ID individual is qualified to work in Community Employment. That is NOT SO. ”

1. "14 (c) has created significant barriers to the organization in terms of advancing legislative goals, creating strategic partnerships, and increasing employment opportunities within the AbilityOne program." For whom will this legislation increase employment opportunities? You presume that EVERY ID individual is qualified to work in Community Employment. That is NOT SO. Does this legislation contain one bit of testing or Evaluative Criteria to determine who is or who is not qualified to work in a Community Setting? It does not. How then can you make such uninformed statements without obtaining those facts?

2. "A growing number of key decision makers and stakeholders view 14 (c) as a discriminatory labor practice, causing people with disabilities to be isolated, segregated and lacking in upward mobility".....Really? How Trumpian of you to say that. You might want to know that The United States Commission on Civil Rights (USCCR) issued a report on this subject; parents and other influential people were PREVENTED from issuing a minority or opposition report, espousing the above points. Does that sound to you like "overwhelming opposition" to 14 (c)? I can tell you personally that overwhelming opposition has amassed to your position from various Special Needs, Medical, Law, and Psychological Community Professionals. I advise you and your Board to tread lightly before you make such irresponsible statements that lack factual foundation. Americans are not stupid. They can see through Bluster. They can see through an argument that has no factual basis. Does that sound vaguely familiar after what all of us just went through? Fact and Truth prevailed then. It will prevail now. You offer no factual basis for your opinion.

3. Further, your "discriminatory labor practice" argument has two answers:

A. WC's are not "Sweatshops", plain and simple, as many legislators and your "Key" people have obviously wrongly opined. Indeed, they are honorable workplaces, with all employees under constant supervision. Worktimes are usually from 10 am to 3 p4m with an hour for lunch. Socialization at lunch between employees is encouraged, which is vital. Weekly wages are between $60.00 and $200.00. At ISP conferences, employees are asked if they want to stay in the WC or enter into the Community. CHOICE is the watchword. All conferences are accompanied by a 25 to 30 page report, which codifies the events at the conference. By the way, I would encourage you to visit a WC. I promise you will be enlightened.

B. Your position about discrimination is unconstitutional, in light of the ID individual's choice to remain at the WC. Think about it. What you are supporting is de facto mandating that every ID individual work in a Community Setting without an equal mandate of every Employer to accept ALL ID Individuals for employment and mandate specific care programs (training, distribution of meds during the day, eating facilities, etc). Sounds like a denial of 4th Amendment Equal Protections to me … how about you?

You should also know that the Moms and Dads of this world who have ID individuals are not taking this lying down. We plan a massive Social Media campaign against any and all groups who oppose the concept of Choice of Workplace for our Children, and we will be sure to let those businesses with whom you are affiliated and those others who are in favor of the repeal of 14 (c) know of your position, and the devastation it will cause if adopted. In the Spring, a number of us will be traveling to Washington with our children to see the House and Senate members. We would be pleased to pay you a visit.
Teen Vogue, Labor Unions Want To End ‘Sub-Minimum Wage’ For Severely Disabled Workers. Here’s Why That’s A Bad Idea.
By Ashe Schow, Daily Wire, December 29, 2020
Teen Vogue is at it again, publishing a column by a person whose bio describes them as a “writer and radical organizer” that amounts to a wish list of labor items from a Joe Biden administration.

Of particular note is Kelly’s claim that eliminating the sub-minimum wage for severely disabled workers would provide “real, tangible support to the most marginalized and vulnerable members of the working class.”

Labor unions who have been pushing for this elimination received some help from the U.S. Commission on Civil Rights earlier this year. The Commission released a report siding with the labor unions in suggesting that we should eliminate the special minimum wage that ensures disabled persons can find work without competing against nondisabled persons.

Gail Heriot, the voice of reason on the Commission, dissented to the report, pointing out that after publication, the Commission received nearly 10,000 public comments, mostly from parents or relatives of severely disabled persons asking the Commission to keep the sub-minimum wage.

“Apparently, we are supposed to believe that Teen Vogue and the labor movement care more about the welfare of Down Syndrome workers than their own parents do,” Heriot wrote on Instapundit.

In her dissent, Heriot explained that the special minimum wage comes from Section 14(c) of the Fair Labor Standards Act and was adopted in 1938 along with the federal minimum wage.
“Back then it was believed—no doubt correctly—that a federal minimum wage would cause many disabled persons to become unemployable. An exception was thus created. A limited number of employers would be permitted to obtain certificates authorizing them to pay disabled persons something less than the minimum wage. Under current law, how much less depends upon stringent tests of each such employee’s productivity, which must be conducted every six months,” Heriot wrote.

Further, she wrote, keeping Section 14(c) would allow disabled persons to choose to work in “sheltered workshops,” which hired the disabled for jobs they can handle at a reduced pay. As Heriot noted, it is entirely optional for the disabled to take the reduced pay for protected jobs. They are also free to find employment for minimum wage and higher where they would work alongside nondisabled persons.

Some disabled persons will be able to compete with nondisabled persons for the same jobs, but others will not, Heriot insisted. She noted that the Commission’s report “waits till page 99 (by which time nearly all Members of Congress have stopped reading) to mention that 98 per cent of the members of the public who submitted comments to the Commission support the continuation of Section 14(c).”

Profound Autism:
“Profound Autism” Is the Term We Need to Provide Critical Specificity to a Broad Spectrum
By: Alison Singer, Autism Spectrum News, January 6th, 2021
The author is the Co-founder and President of the Autism Science Foundation

“What is your disability, because I’m not seeing one?” a young man on a date asks during an episode of Love on the Spectrum, Netflix’s recent reality show hit. “What does autism look like to you?” the young woman sitting across from him retorts.

For many families struggling with relatives who have a significant form of autism, their experience looks nothing like anything depicted on the feel-good series. Their children will not be part of the dating pool, and their worries are more acute: How can I stop my son from banging his head against the floor before his retina detaches? Who will step in when my daughter tries to swipe food from a garbage can? What will happen to my nonverbal 250-pound adult brother who wanders away from his caregivers and has prompted calls to police?
While shows like Love on the Spectrum are well-meaning, they often do a disservice to those with a more severe form of autism. Their reality is far from an endearing quirk, or a slight impediment that can be overcome with a bit more understanding and patience.
To combat this false perception, and to provide additional support to individuals and families facing this reality, prominent autism researchers have coined a new term for those on this end of the spectrum: profound autism.

Dr. Catherine Lord, a professor at UCLA’s Center for Autism Research & Treatment and a member of the Lancet Commission on the Future of Care and Research in Autism, debuted the term during the Autism Science Foundation’s (ASF) annual Day of Learning in September. Dr. Lord noted that autism is an incredibly heterogeneous condition, and there is a vast difference between a person with high functioning/high IQ autism, who can still function somewhat typically in society, (and do things like appear on a reality dating show) versus a person with autism severe enough to require round-the-clock care. According to Dr. Lord, the Lancet Commission concluded that “useful categories might bring attention to the different needs of different people” and that these categories must be applied “across race, across social class” and be consistent among diagnosticians globally.

I agree that it is imperative to have language and categories that reflect these vast differences. The term profound autism is not meant to further stigmatize people who fall into this category, but to provide necessary differentiation and additional support for people and families who need it most.

I understand the need for this term not only as co-founder and president of the Autism Science Foundation, but as a parent of a child with profound autism. My 23-year-old daughter is thriving in an intentional community for adults with severe disabilities, where she works on a farm and lives with peers. She is happy and productive―a far cry from the misery of wasted years attempting once-size-fits-all mainstreaming.

Direct Support Professionals:
Calls Get Louder for Pay Hike for Front Line Workers
Direct Support Professionals who care for the elderly and disabled are leaving for better paying jobs.
By Vivien Leigh, News Center Maine, December 31, 2020

Calling it a 'dire situation' -- providers who care for some of Maine's most vulnerable populations are stepping up their appeal for state funding -- in the form of higher wages and more supplies of Personal Protective Equipment.   They're called Direct Support Professionals -- or D-S-P's -- and they work with the elderly and people with disabilities in group homes and congregate living facilities -- often for close to minimum wage -- in places where COVID-19 has run rampant.

DSP's help more than 400 residents with intellectual and developmental disabilities live independently.

Independence Association runs 10 group homes in the greater Brunswick area.  But the organization is down a third of its employees during the biggest surge of the pandemic. Other providers are experiencing major staff shortages, as well...fueled by low wages, concerns about the virus, and having to work long shifts in full PPE gear. 

'People across the state are hurting for DSPs so badly and we can't afford to pay them hazard pay,' Ray Nagel, the Executive Director at Independence Association said.

Right now, DSP's make around $12 an hour, the minimum wage. 

But Portland's new wage increase, including emergency pay for front line workers is luring away potential employees. 

"They can go from Brunswick to Portland, where they can make $18 an hour," Nagel said.
A 10 percent pay hike to Maine Care reimbursement rates, when COVID-19 hit, ended in June. Some providers used the funds to purchase proper PPE. Providers are lobbying the Maine Department of Health and Human Services for a 25 increase through the first few months of next year. Providers are also working with legislators on proposed legislation that includes a pay increase that could be introduced in the next session. Nagel said the organization is grateful to DHHS that staff and residents are scheduled to be [vaccinated] against COVID-19 in the next month or so. 

Shortages of Direct Support Professionals are also impacting residential treatment centers in Maine.
They provide medical care to people with intellectual disabilities and mental health problems. 

Jennifer Profenno's daughter Rhiannon, was diagnosed with autism at a young age. Following several hospitalizations, she was placed at a center in New Hampshire six years ago, because no beds were available in Maine. Now 18, Rhiannon remains on a waitlist to return home. But due to COVID-19 restrictions, the family has only been able to face time with her...they haven't seen her in person since February.

"The biggest concern for her always is she getting the proper care," Profenno said. 

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.
VOR Bill Watch:
All of the bills that were not passed in the 116th Congress have expired.

The 117th Congress has not yet introduced any bills that directly affect people with I/DD. We are watching daily to see if any of the bills that we supported or opposed are introduced in the new congress.

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. 

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
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