October 2, 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
VOR & You:
In Memoriam: Feda Almaliti and Mu
It is with great sadness that we report the death of a friend of VOR. Feda Almaliti, one of the founders of the National Council on Severe Autism, perished in an accidental house fire in her home in Fremont, California on September 27, 2020, along with her cherished son Muhammad (Mu).

Feda was able to run out of the house along with her sister and niece but then went back in to bring out Mu. She could not carry him but kept fighting til she lost her breath due to heavy smoke. When the fire officials found the bodies, Feda was holding Mu.

Feda touched many lives with her love, determination, humor, and devotion to helping individuals with severe autism and their families.
National News:
Residents, Staff in All Long-Term Care Facilities should be First in Line for Coronavirus Vaccine: AHCA
By Danielle Brown, McKnight's Long-Term Care News, September 30, 2020
The nation’s largest nursing home association is calling on state governors to prioritize residents and staff in long-term care facilities for an eventual COVID-19 vaccine as the leaders prepare to submit plans on how their state will distribute the doses.

The American Health Care Association/National Center for Assisted Living issued the plea on Tuesday in a letter to the National Governors Association and state governors. State leaders and jurisdictions are required to submit plans on how they will administer and distribute a vaccine to the Centers for Disease Control and Prevention by Oct. 16 as part of the federal government’s COVID-19 vaccination program.

“Given that long-term care facilities care for our most vulnerable when it comes to this virus and employ hundreds of thousands of essential health care workers, we urge that your plans to the CDC make residents and staff of these settings the highest priority for the vaccine,” AHCA President and CEO Mark Parkinson and NCAL Executive Director Scott Tittle wrote. “Those who reside in long-term care facilities are especially susceptible to this novel virus.”

Parkinson and Title noted that prioritization should stretch to all types of long-term care facilities, spanning nursing homes, assisted living and memory care communities, intermediate care facilities for individuals with developmental disabilities, and independent living communities.

They added that while COVID-19 cases in all long-term care facilities account for only 8 percent of total cases nationwide, they account for 41% percent of all COVID-19 related deaths, according to federal data.

Federal Autism Committee Goes Dark
By Michelle Diament, September 29, 2020
A long-established federal autism advisory committee charged with coordinating the government’s activities related to the developmental disorder has been defunct for the last year.

Every member of the panel known as the Interagency Autism Coordinating Committee, or IACC, saw their term expire at the end of last September. To date, no new members have been appointed.

The committee comprised of federal officials and members of the autism community last met in July 2019. Nominations for new members were being accepted between Nov. 19, 2019 and Feb. 21, 2020.
Under the latest iteration of a law known as the Autism CARES Act, which took effect last fall, the IACC is set to grow in size. The number of self-advocates, parents and autism group representatives on the panel will increase from two to three each. And, there will be members from the U.S. Departments of Labor, Justice, Veterans Affairs and Housing and Urban Development.

What We Know About Homelessness and Intellectual Disability
The Bronfenbrenner Center for Translational Research, Cornell University, Psychology Today, September 29, 2020
There are more than a half million homeless people in the United States; more than half of them sleep unsheltered each night, while the other half use emergency shelters and transitional housing.

Research demonstrates that 30 to 40 percent of homeless people have a cognitive impairment, including traumatic brain injury, learning difficulties, intellectual disabilities, autism spectrum disorder, and attention deficit hyperactivity disorder.

A systematic review published this year takes a more careful look at how intellectual disabilities affect the homeless and what interventions could help. The review includes 13 studies from developed countries across the globe. Its findings provide a road map of how to help homeless people with intellectual disabilities.
In one study, participants with intellectual disabilities were the only ones who reported wanting to remain homeless. Study participants with intellectual disabilities were less likely to remember their original home address and less likely to reintegrate with family members.

People with intellectual disabilities are more likely to become homeless at an older age due to the breakdown of a relationship or the death of a primary caregiver. They are more likely to have difficulty accessing health care services because of their disabilities.

CMS Seeks Input on Recommended Quality Measures for Home- and Community-Based Services
September 28, 2020

The Centers for Medicare & Medicaid Services (CMS) has published a Request for Information (RFI)
on a Recommended Measure Set for Medicaid-Funded Home and Community-Based Services (HCBS).

The RFI seeks feedback on potential benefits of and challenges that could result from a nationally available set of recommended quality measures for voluntary use by states, managed care organizations, and other entities engaged in the administration and/or delivery of Medicaid-funded home and community-based services (HCBS). CMS is also requesting stakeholder comment on the purpose and organization of the recommended measure set, the criteria used to select measures, and a preliminary draft set of measures for assessing the quality and outcomes of Medicaid-funded HCBS.

Comments should be submitted electronically to [email protected] no later than October 19, 2020.

Spotlight: Why Murray Center?
The Murray Parents Association
is presenting a series of six videos featuring families explaining why Murray Center and Intermediate Care Facilities can offer care and benefits not available in other settings.

In the first video, Peggy strong describes Marjorie's journey, and how Murray Center has changed her life and given her freedom that she had never had in group home settings.
In the second video, the Duecker family speaks about how important the Murray Center has been in supporting their son with severe autism and helping him to control his behaviors

Click on the links below to view the
Murray Parents Association videos

State News:
Florida - Testing Requirement Dropped For Disability Facilities
Health News Florida. September 28, 2020
Gov. Ron DeSantis’ administration on Friday announced it is backing off a requirement that facilities for people with developmental and intellectual disabilities test staff members for COVID-19 every two weeks.

The move followed the administration’s decision this month to no longer require assisted living facilities and nursing homes to test staff members.

Suzanne Sewell, president and CEO of the Florida Association of Rehabilitation Facilities, said that effective Wednesday, facilities for people with disabilities will no longer receive from the state testing kits needed to meet the mandate.

The company Curative, which signed an agreement with the state to supply the test kits, won’t provide results for any tests postmarked after Oct. 1, Sewell said in a statement to The News Service of Florida.

Meanwhile, the state Agency for Persons with Disabilities told members of the Florida Developmental Disabilities Council that the testing rule also would be eliminated for group homes at the end of the month.
When the state let expire a pair of emergency rules that mandated staff testing at nursing homes and assisted living facilities, Agency for Health Care Administration Secretary Mary Mayhew said they could expire, in part, because nursing homes would still be required to test staff under a federal rule. Nursing homes are receiving rapid testing kits from the federal government to comply with the rule.

But the federal rule does not require assisted living facilities, what are known as intermediate care facilities for people with developmental disabilities or group homes to test staff members.

NY, NJ, CT - Lawsuit Claims Special Needs Kids Not Getting Proper Education During Pandemic
News 12 Hudson Valley, October 1, 2020
Nearly seven million American children with disabilities are trying to navigate school during the pandemic. The consequences for some can be devastating. And a new lawsuit is raising questions about whether or not their civil rights are being violated.

The mother of Grady Witkowski, a 10-year-old boy with Down Syndrome from Orange County, says her son isn’t getting the services he needs. She says a virtual return to school this fall has left her son without the one-on-one services he's legally entitled to. "At this point he has zero access to his education…we're seeing regression." The family created a video that in which they say their pleas have fallen on deaf ears.

Other families across the tri-state in a similar situation are trying out a different approach and are taking their the fight to federal court.

“We had testimonials from parents being sent to the district, and it was being ignored.” Before the pandemic, Dustin Tobacco's mom says her teenage son with Austim was thriving at his Middletown, New Jersey school district. ”He was doing so well. He was playing football. He was on the wrestling team.” But without any in-person instruction, she says five years of progress, unraveled in less than five months. “To see behaviors emerge that we haven't seen in so long, it's heartbreaking.”

So she signed onto a class-action lawsuit alleging school districts nationwide are illegally denying services to special needs children that are federally mandated, through individualized education programs, known as IEPs. It's also the first legal challenge in the nation to demand what's called a “pendency voucher,” which would provide funding for families to hire private aides in school districts not yet open full-time.

New York City attorney Patrick Donohue, whose own daughter has a traumatic brain injury, says the suit began with a few families across New York and New Jersey. But then horror stories started pouring in from across the country. “One parent is a single mom who has two autistic children, she had to quit her job…It's really pulled back the scab of what millions of families go through every year. And it's insane that you have a federal law that's supposed to protect them, but they're basically ignoring the rights of these families.”

Now, there are 500 plaintiffs from 35 states, including 214 from New York, 48 from New Jersey and 18 from Connecticut. “Towards students with disabilities that there is an overall opinion among a lot people that they matter less. And I think that the pandemic and the closure shed light on that. I think it shed light on a lot of discrimination and bigotry that exists in the educational systems,” says Donohue.

California - Children Missing Out On Developmental Services Because Of Labyrinth System
By Claudia Boyd-Barrett, California Health Report via Disability Scoop, September 30, 2020
As Karla Garcia of San Francisco watched her third child grow, she had a feeling something was different.At 4 months old, Brianna still couldn’t keep her head steady or lift it up when she was on her stomach, a milestone babies typically reach by 2 months old. She also didn’t hold her mother’s gaze or look intently at other familiar faces. That’s something babies normally do within their first month of life.

But when Garcia raised her concerns with Brianna’s pediatrician, the doctor said it was too soon to tell whether or not her daughter’s development was normal. It would take Garcia another year and a half of persistently demanding answers and seeking help before Brianna finally received an official diagnosis: She had a genetic, neurological disorder called Rett’s Syndrome, which can result in developmental delays and numerous health problems.

“The hardest part was feeling like the pediatrician was not listening to me,” said Garcia, who is originally from El Salvador and has two older children. “The wait before we got an actual diagnosis was really hard.”
Garcia is not alone. In California, parents who suspect their child has a developmental delay often wait months or even years to get a formal diagnosis and to obtain services, according to research by the First 5 Center for Children’s Policy. By the time these children receive treatment — which is often contingent upon getting a diagnosis — they may have missed out on a critical window of time during which interventions for disorders such as autism or Rett’s Syndrome can be most effective. These delays have likely become more acute during the pandemic, as families are less likely to be visiting doctors for check-ups and children aren’t interacting as much with early childhood professionals who can spot signs of developmental challenges, experts with the First 5 Center said.

New York - NY's Group Homes Face Painful Funding Cuts
By Jodi Goldber, Fox 5 News NY, Sept. 30, 2020
Konnor Rampe, 22, has been living in state-run group homes for the past four years. "As Konnor began to get bigger and approach me in size and his behaviors became more unmanageable, we were left with no choice but to rely on the services provided by these residential institutions and homes," Chris Rampe, a parent, said.  

If funding is cut to these homes, the lives of nearly 38,000 individuals with disabilities in New York who reside in a resident setting would be drastically impacted. 

The special-needs community is already feeling the impact. Gov. Andrew Cuomo is withholding 20% of state reimbursements to offset federal aid that ended. On Oct. 1, the Office for People With Disabilities, which operates the group homes, is set to slash the reimbursement rates for empty beds for residents who go home for a night or are hospitalized.

Suzanne Reek received an email from her son Joseph's group home notifying her of these changes.
"They're going to be getting 50% less in reimbursement rates from the state," said Reek, a parent and executive director of the Autism Society's Nassau/Suffolk Chapter. "It's frightening because there's a shortage of housing on Long Island as it is."

And this is not just happening on Long Island. Parents across the state are facing the same hardships.

Susan Constantino, the president and CEO of the Cerebral Palsy Association of New York, is asking the governor for help. 

"Tell us the amount and let us come to you with how we think we could do this versus you taking 20% off everything because this will hurt more," she said.

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. 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.)


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.


VOR is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.


During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.

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?

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