March 20, 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

Note: If the conference is canceled due to the COVID-19 pandemic,
all registration fees will be refunded.
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

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:
COVID-19

By now, most Americans have determined their sources of information regarding the constant stream of "Breaking News". There is much information out there, much conflicting information, and new information that appears by the hour.

At this point, every state in the Union has been affected in some way. There are too many separate articles to include here, and by the time you read them, much of the content will be outdated. At this point, most, if not all, of the ICFs, group homes, nursing homes and other residential facilities have closed to non-essential personnel and visitors. Day programs and vocational centers have been closed for the duration, and those who had participated in these opportunities are sheltering at home without the benefits of these activities. With the closure of schools, special classes for children with autism and intellectual disabilities have been suspended. Parents are trying to find ways to make up for these lost programs.

We hope you will keep up to date on information in your state, and take every precaution to protect yourself and your loved ones by heeding the guidelines for staying in and social distancing when out of your home.

Below are some useful links for keeping up to date on the virus.





Coronavirus Brings Added Worries For People With Disabilities
By Blythe Bernhard, Disability Scoop, March 17, 2020

The coronavirus pandemic has created unique concerns for caregivers and people with intellectual and developmental disabilities.

Individuals with disabilities likely have the same risk factors as the general population — those who are older or have compromised immune systems are most vulnerable to the virus.

But anyone with intellectual disability, moderate to severe developmental delay, muscular dystrophy or brain disorders may also be more susceptible to severe illness from COVID-19, according to the Centers for Disease Control and Prevention.

As of Monday, there have been 3,487 cases of coronavirus, or COVID-19, and 68 deaths across the U.S., according to the CDC.

Beyond canceling large events, the federal agency recommends social distancing practices in residential facilities and adult day programs to prevent the spread of the virus. These practices include staggering meals and activity schedules, limits on visitors and daily body temperature screening for residents and staff. In situations where a positive coronavirus case is identified, quarantine or closure may be recommended.

Families should check with their care providers to ensure the guidelines are being followed, experts said.

Living Under Quarantine: Parents Unite In Face Of Challenges
By Christy Gutowski, Chicago Tribune, March 17, 2020
Barbara Murphy has tried to hide her fears from her quarantined 15-year-old son, keeping him calm and occupied while worrying for days that he was infected by the new coronavirus.

The Chicago teen is one of more than 200 students with disabilities at Vaughn Occupational High School who have been asked to remain in their homes since late March 6, when it was confirmed that a special education classroom aide had the virus. His medical fragilities place him at high risk for developing COVID-19; born with a rare birth defect that didn’t allow his lungs to grow fully, John also has autism and epilepsy.

“He doesn’t understand all this,” Murphy said. “He’s very confused and wondering why he’s not going to school. ... He’s a social guy and I think is really missing out on seeing his friends."

Authorities have asked anyone who was inside the Vaughn school building between Feb. 25 and March 6 to remain home — unless they need to
seek medical care — through March 18. Though
not all family members are subject to the quarantine, many parents such as Murphy are staying in as their child deals with the stresses of home confinement and fear of illness.

The shut-in scenario would be difficult for any parent, but Vaughn families have particularly complex challenges. Located in Portage Park, the high school serves students with cognitive, developmental and multiple disabilities. So these parents are not only missing work, they are canceling important doctor appointments and therapies and making do without the extra help some would receive if their home wasn’t on a self-imposed lockdown.

National News : The Expansion of Telehealth
With strain that the Coronavirus has placed on America's health care system, CMS has recently expanded its use of telehealth services, and has increased its willingness to compensate providers for utilizing this mode of delivering health care at a time when Americans are being encouraged to stay at home and not go to hospitals or doctors' offices for routine matters.

Telehealth has been around for several years, but has been most commonly deployed in rural areas where services are few and far between. While CMS insists that these services are being expanded on a temporary basis, there are many professionals who welcome this change as a possible new feature of our larger health care system in years to come.

Below are two features that may be of interest to you as you shelter at home.
CMS - Medicare Telemedecine Health Care Provider Fact Sheet
CMS Website, Mar 17, 2020

Under President Trump’s leadership, the Centers for Medicare & Medicaid Services (CMS) has broadened access to Medicare telehealth services so that beneficiaries can receive a wider range of services from their doctors without having to travel to a healthcare facility. These policy changes build on the regulatory flexibilities granted under the President’s emergency declaration. CMS is expanding this benefit on a temporary and emergency basis under the 1135 waiver authority and Coronavirus Preparedness and Response Supplemental Appropriations Act. The benefits are part of the broader effort by CMS and the White House Task Force to ensure that all Americans – particularly those at high-risk of complications from the virus that causes the disease COVID-19 – are aware of easy-to-use, accessible benefits that can help keep them healthy while helping to contain the community spread of this virus. 
 
Telehealth, telemedicine, and related terms generally refer to the exchange of medical information from one site to another through electronic communication to improve a patient’s health. Innovative uses of this kind of technology in the provision of healthcare is increasing. And with the emergence of the virus causing the disease COVID-19, there is an urgency to expand the use of technology to help people who need routine care, and keep vulnerable beneficiaries and beneficiaries with mild symptoms in their homes while maintaining access to the care they need. Limiting community spread of the virus, as well as limiting the exposure to other patients and staff members will slow viral spread.

EXPANSION OF TELEHEALTH WITH 1135 WAIVER: Under this new waiver, Medicare can pay for office, hospital, and other visits furnished via telehealth across the country and including in patient’s places of residence starting March 6, 2020. A range of providers, such as doctors, nurse practitioners, clinical psychologists, and licensed clinical social workers, will be able to offer telehealth to their patients. Additionally, the HHS Office of Inspector General (OIG) is providing flexibility for healthcare providers to reduce or waive cost-sharing for telehealth visits paid by federal healthcare programs.

Prior to this waiver Medicare could only pay for telehealth on a limited basis: when the person receiving the service is in a designated rural area and when they leave their home and go to a clinic, hospital, or certain other types of medical facilities for the service. 

COVID-19 – New York Expands Telehealth Utilization
National Law Review, March 18, 2020

We hope that everyone is staying safe during the COVID-19 crisis. State health departments are, of course, doing what they can to facilitate management of transmission of COVID-19 by healthcare providers. Some recent actions by the New York Department of Health (“DOH”) to allow or promote telephonic and telehealth services include:

Telephonic Evaluation – Beginning with dates of service of March 13, Medicaid will reimburse telephonic evaluation and management services for established patients where face-to-face visits may not be recommended and it is medically appropriate to evaluate and manage the patient by phone. Additionally, where a patient face-to-face visit is not possible due to the State of Emergency, telephonic visits documented as clinically appropriate by the provider will be considered medically necessary for Medicaid payment purposes.

Face to Face Requirements – DOH has authorized Home and Community Based Services provided under both the Home Health Care Management and 1915(c) Children’s Waiver to be provided telephonically or via telehealth whenever possible in lieu of face-to-face contact.   

Cost Sharing – For New York Medicaid Managed Care plans, the Medicaid program will cover services including testing for COVID–19 and for physician, clinic, and emergency visits without copays for members when the purpose of the visit is testing for COVID–19. 

Telehealth – Also for New York Medicaid Managed Care plans, under prior amendments to the New York Insurance and Public Health Laws, services that are covered under a comprehensive health insurance policy or contract must be covered when the service is delivered via telehealth. DOH is encouraging the use of telehealth modalities to provide COVID–19 related services to Medicaid recipients.

State News:
South Carolina - School District Violating ADA By Barring Behavior Therapist, Suit Claims
By David Weissman, The Sun News via Disability Scoop, March 17, 2020

After years of pleading with Horry County Schools to allow a trained behavior therapist into the school to help his son with autism, David Warner is taking his battle to court.Warner filed the lawsuit this month in U.S. District Court on behalf of his 9-year-old son, alleging the school district and Superintendent Rick Maxey are violating the federal Americans with Disabilities Act and Rehabilitation Act.

The suit details his son’s autism diagnosis and a pediatrician prescribing him 40 hours per week of applied behavior analysis therapy supervised by a board-certified behavior analyst in multiple settings, including at school.

Warner alleges that the district has continually refused to allow his son’s ABA therapist, at no cost to the district, into the school and, as a result, he’s developed severe problem behaviors, including physical aggression and exposing body parts.

Those behavioral issues have led to his suspension from Carolina Forest Elementary School and a subsequent regression in his communication and language skills, the suit states.

The complaint specifies that these claims of federal violations don’t center on a denial of a free and appropriate public education under the Individuals with Disabilities Education Act, but rather about appropriate access to public school facilities.

“Allowing (his son’s) ABA trained therapist to administer his medically necessary treatment during school as prescribed by his physicians is no different than permitting a service dog accompanying someone with a seizure disorder or a vision impairment,” the suit states.

Nebraska's Developmental Disabilities Director Leaving for Federal Job
By Martha Stoddard, World-Herald Bureau, Mar 18, 2020

Courtney Miller is stepping down as Nebraska’s developmental disabilities director to take a job with the federal government.

Miller will become the Medicaid and Children’s Health Insurance Program operations group director within the federal Centers for Medicare and Medicaid Services, a newly created position, according to a Wednesday announcement. She will leave her Nebraska job on April 4.

Dannette Smith, CEO of the Nebraska Department of Health and Human Services, praised Miller’s work as head of the division that oversees and finances home and community-based services for people with developmental disabilities and operates the Beatrice State Developmental Center, a state institution for people with developmental disabilities.

“During her tenure, she has brought changes that will truly have a long-lasting, positive impact on Nebraskans,” Smith said.

Tony Green, deputy director for the Division of Developmental Disabilities, will be interim director.

Special Education At Home:
Ed Department Offers More Special Education Guidance Amid COVID-19
By Michelle Diament, Disability Scoop, March 18, 2020

As schools across the nation shutter in response to coronavirus, federal officials are giving educators additional insight on how to handle the needs of students with disabilities.
The U.S. Department of Education’s Office for Civil Rights issued a webinar and fact sheet this week for education leaders aimed at ensuring that students’ civil rights are upheld while schools are closed due to COVID-19.

The webinar reminds school officials that distance learning must be accessible unless “equally effective alternate access is provided.”

Online learning tools should be compatible with any assistive technology that students use and schools must regularly test their online offerings for accessibility, the Education Department said.

“OCR’s accessibility webinar is intended to remind school leaders at the elementary, secondary and postsecondary levels of their legal obligations to ensure that all students, including students with disabilities, can access online and virtual learning programs,” said Kenneth L. Marcus, the Education Department’s assistant secretary for civil rights. “Students with disabilities must have access to educational technology utilized by schools, and OCR will continue to work to ensure that no student is excluded from utilizing these important tools.”

If a student with a disability is absent from school for an extended period because of coronavirus, but the school remains open, the student has a right to continue to receive a free appropriate public education, or FAPE, the Education Department’s fact sheet states. But if schools close and no educational services are being provided, then the school does not have to serve students with disabilities, the agency said.

In addition, the fact sheet explains that individualized education program teams are not required to conduct in-person meetings while schools are closed. And, any evaluation of a student with a disability that must be done face to face should be postponed until the school reopens.

For Parents Trying to Replicate School for Children with Disabilities, a Confounding Task
By Laura Meckler and Valerie Strauss, The Washington Post, March 20, 2020
Like lots of other kids, Jocilyn Oyler’s 11-year-old daughter is out of school amid coronavirus fears. But unlike other kids, she can’t just log onto the computer and do her schoolwork at home.

At school, she gets adult help in every classroom, plus speech therapy and other services. With her school closed, all that is gone. “She can’t write a paragraph without having a meltdown,” her mother says.

In the age of this new and deadly virus, most American school districts have closed their doors, hoping remote learning can serve as a replacement in the coming weeks or even months. But few districts have figured out how to extend this online learning and other critical services to the 7 million children with disabilities.

Federal law requires school systems to provide students with disabilities an appropriate education. Unable to meet that requirement, some districts are opting not to offer online instruction to anyone because they are unable to offer it to everyone.
Meantime, parents are at home, struggling to care for their children, often while juggling work and care for siblings, with no idea how long the national experiment in mass home schooling will last.

It’s daunting to even think about, said Michael McKenzie of Wilmette, Ill., who has an eighth-grade son who is on the autism spectrum. At school, his son has a huge support team: a vision therapist, speech therapist, occupational therapist, learning behavioral therapist and various teachers in the classroom, adaptive special education and special subjects.

How will McKenzie and his wife replicate all that? “The best we can,” he said.

California Students Enrolled in Special Education Face Unique Burdens During School Closure
By Carolyn Jones, EdSource, March 19, 2020
Loss of specialized services, daily routine poses challenges for California's 800,000 students in special education.

JoAnna Van Brusselen’s 11-year-old daughter, Iolani, loves school and has been making great progress in her occupational and physical therapy. While living with cerebral palsy, hemiplegia, visual impairment and hydroencephalitis, she can walk.

She can use her right hand, and she’s a whiz at reading and learning languages.But now that her school, Leonard Flynn Elementary in San Francisco Unified, is closed for at least three weeks, Van Brusselen is worried her daughter will regress, losing the mobility and academic skills she had worked so hard to master.
“All the therapies she got at school, obviously, she’s not getting any of those now,” said Van Brusselen, who also has an 18-month-old daughter and works from home. “I’m doing the best I can, but it’s frustrating, because I know I can’t help her as much as her teachers and therapists can.”

As California K-12 schools closed this week to help prevent the spread of the coronavirus, one group of students is particularly impacted by the loss of routine and specialized instruction: the nearly 800,000 public school students in special education programs.

Coronavirus: Is Remote School illegal? Child with Special Needs Loses Services
By Max Londberg, Cincinnati Enquirer, March 19, 2020
Sarah Woodward is better equipped than most to meet her children's education needs.

But even the teacher at Cincinnati Public Schools, who has a special education background, is unable to provide her own child with autism the optimal education he deserves.

Only his school district, Milford, can do that. But amid Ohio's statewide school closure to combat the coronavirus pandemic, Woodward said her son's district simply can't provide the same level of services he received in school – services that may be required by law during the shutdown.

Milford, Cincinnati and districts across the country are doing the best they can despite extraordinary circumstances, Woodward emphasized, but children like her son are losing out.

"Any student who has significant needs that are provided by the school district ... if they are not in a classroom, they don't have access to the services necessary," Woodward said. "Because all of those resources are in the school."
It's a challenge that threatens developmental consequences for the most vulnerable students.
Federal law calls for people with disabilities to have an equal opportunity to participate in everything schools provide. If districts don't accommodate students, they risk losing federal aid – and facing complaints for violating federal civil rights laws.

The U.S. Department of Education recently issued equity guidelines during the emergency closures triggered by the new coronavirus outbreak, saying schools that fully close don't have to provide services to students with disabilities.

But districts that continue providing educational opportunities during a closure, such as Cincinnati and Milford, "must ensure that, to the greatest extent possible, each student with a disability can be provided the special education and related services identified in the student's (special education plan)," the department said in a posting on its website.

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.

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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