July 10, 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
Earlier this week, we sent out an email directing members to VOR's response to the ACLU/SEIU petition to HHS and other agencies, essentially threatening lawsuits if the agencies did not use the COVID-19 to reduce the number of ICF beds by 50%. If you missed the story, it may be found on our website, at https://www.vor.net

The lead story below shows that the ACLU is not alone in trying to use the pandemic to deprive people with high needs from receiving long-term care in an ICF setting and denying families of their right to choose the setting they feel is most appropriate for their loved one with IDD. We find it deeply disturbing that these individuals, and organizations like the Center for Public Representation continue to misrepresent Olmstead and intermediate care facilities in their pursuit of a one-size-fits-all agenda for an incredibly diverse population of people. Likewise, we are disappointed that a responsible news outlet like Disability Scoop continues to publish these statements without questioning the underlying facts and without pointing out the language in Olmstead or questioning the myth that everyone in an ICF is being unjustifiably segregated.
National News:
Trump Administration Weighs In On Disability Services Amid COVID-19
By Michelle Diament, Disability Scoop, July 10, 2020
New guidance continues to flow from the federal government advising states on Medicaid and special education services in light of the pandemic.
The Centers for Medicare and Medicaid Services updated its 99-page frequently-asked-questions document for states detailing how COVID-19 may affect Medicaid services.

Significantly, advocates say CMS is emphasizing for the first time that despite the pandemic, states must continue to comply with the U.S. Supreme Court’s 1999 ruling in Olmstead v. L.C., which found that people with disabilities have a right to access services in the community.

“Please note that states are reminded that they still are responsible for compliance with the integration mandate of Title II of the (Americans with Disabilities Act) and the Olmstead v. LC, 119 S. Ct. 2176 (1999) decision to avoid subjecting persons with disabilities to unjustified institutionalization or segregation,” the guidance states. “Therefore, states should strive to return individuals who were removed from their Medicaid-funded (home- and community-based) settings during the public health emergency to the community, and should consider what steps they can take to help
individuals with disabilities who may require assistance in order to avoid unjustified institutionalization or segregation.”

Alison Barkoff, director of advocacy at the Center for Public Representation, said this mention of Olmstead is particularly important given how hard hit many institutional settings have been by COVID-19.

“We need to make sure people are getting supports in the community so they don’t get transferred to nursing homes and other institutions where they are most unsafe,” she said.

The Medicaid guidance also includes a number of questions related to Money Follows the Person — a program that helps people transition from institutions to community-based settings — signifying to states that this program should proceed during the pandemic, Barkoff said.

Majority Of States Failing To Meet Obligations Under IDEA
By Michelle Diament, Disability Scoop, July 6, 2020

Less than half of states are doing what they should to serve students with disabilities in compliance with federal special education law, the U.S. Department of Education says.

The agency indicated in a report out late last month that just 21 states satisfied the “meets requirements” threshold for the 2018-2019 school year in annual evaluations of their obligations under the Individuals with Disabilities Education Act for students ages 3 to 21.

Meanwhile, 27 states and Washington, D.C. were classified as “needs assistance,” many of which have qualified for the designation for two years in a row or more. Two states — New York and Vermont — received the lower designation of “needs intervention.”

Two weeks ago, we printed an opinion piece from Amy Lutz, friend of VOR and a member of the Board of the National Council on Severe Autism. Last week the NY Times printed a story on autism that amplified the very concerns that Ms. Lutz brought to light - the denial of the most severely impacted individuals on the spectrum in favor of those more able to interact in non-disabled society.

Below is her response to the Times piece, along with links to the two previously mentioned articles.
Dear NYT Madeline: My Child with Autism Is Not Perfect
By Amy Lutz, NCSA, July 9, 2020
On Independence Day, my 21-year-old, severely autistic son Jonah bloodied his own nose because he couldn’t go to the beach. No matter how many times I explained that we had just gone to the beach the day before, that we would go again the following weekend, and wasn’t there anything else he wanted to do, he would just immediately demand, “Beach, 130 more times!” And as I tried (unsuccessfully, always unsuccessfully) to distract Jonah – offering his iPad, a walk, swimming,
snack, drawing, anything – I couldn’t help thinking of Madeleine Ryan’s bizarre paean to autism, “Dear Parents: Your Child With Autism Is Perfect,” which had appeared two days previously in The New York Times. 

Intent on adding “sparkle” to the autism story, Ryan effuses that autistic children are “the world’s most dynamic, creative, honest and disciplined creature[s]” who “are here to reclaim what it means to be authentic and truthful.” How does she know? Because Ryan – an Australian writer and director who has written dozens of articles as well as a forthcoming novel – is autistic herself.

I know, I know – autism is a spectrum. And I’m not here to challenge anything about Ryan’s experience, because, although I’ve been an autism parent for almost two decades, I know absolutely nothing about life on the Asperger’s-end of the spectrum. Unfortunately, Ryan shows no such restraint. In hyperbolic, sweeping language, she tells parents like me that we are the “chosen one[s],” who have more broadly been charged with parenting “everybody’s unacknowledged needs and feelings.”
But the problem isn’t that Ryan’s over-the-top manifesto reads so much like a parody of the neurodiversity philosophy it’s based on that I honestly assumed it was published in The Onion – it’s that she reveals a stunning ignorance of what severe autism looks like. My son Jonah is not “researching how to reverse engineer Damascus steel.” He has no idea what an engineer does, what steel is, how to find Damascus on a map, or what a map is. His lack of abstract language means his life is profoundly limited: he can answer no questions that begin with “why” or “how.” He will never go to college, hold a job, see the world, or have a romantic relationship. He will always require round-the-clock supervision, because he has no safety awareness: he doesn’t look before crossing the street, despite years of instruction; and in one terrifying moment, he tried to jump off a cruise ship because he wanted to swim in the ocean.

State News:
Pandemic Exacerbates Crisis Levels for Maine’s Group Homes
By Kevin Miller, Press-Herald, July 5, 2020
Providers say state state aid hasn't sufficiently addressed the funding, reimbursement and workforce issues that existed even before COVID-19.

More than 35 group homes for Mainers with intellectual or developmental disabilities have been hit by outbreaks of COVID-19, and the agencies that run them say state support has fallen “woefully” short during the coronavirus pandemic.

Nearly four months after the pandemic began upending life in Maine, leaders of several organizations that provide home-based or community-based care to thousands of individuals with autism and intellectual disabilities say they are struggling to retain staff, procure protective gear and, in some cases, stay afloat financially.

A temporary reimbursement rate increase from the state helped boost the pay of direct-care workers who provide the intimate, personal care to individuals with autism or intellectual disabilities. But the extra funding expired June 1, and service providers say even then it only covered a portion of those costs, much less other COVID-related expenses.

To date, there have been outbreaks – which is three or more linked cases of COVID-19 – at more than 35 group homes serving individuals with autism, intellectual disabilities or mental challenges, according to a review of data from the Maine Center for Disease Control and Prevention.

These aren’t the large outbreaks seen at nursing homes and long-term care facilities, which collectively account for hundreds of cases and the majority of COVID-related deaths in Maine. Group homes are, by definition, smaller settings with typically a handful of residents served by a rotating staff 24 hours a day.

But group homes make up roughly one-third of all outbreak sites tracked by the Maine CDC. Some studies also suggest that individuals with intellectual disabilities may be at higher risk of severe complications from COVID-19 because of other underlying health problems.

Like other providers, John F. Murphy Homes has had small outbreaks at multiple sites. In all, 28 staff members and 10 residents at the nonprofit organization’s homes had tested positive for the virus as of last week.

[Goodwin] estimated that his organization had paid about $420,000 for personal protective equipment, or PPE, premium pay to direct-care workers, overtime and to set up an isolation facility for infected residents. He’s not banking on reimbursements from the state.
Agencies that provide home-based care to thousands of older Mainers or residential care to individuals with intellectual disabilities have been in the midst of a workforce crisis for years. Most direct-care or personal support services workers earn somewhere around minimum wage, which presents a retention and recruitment challenge for agencies when workers can make the same or more in less physically or emotionally demanding jobs.

Exacerbating the financial situation, MaineCare reimbursement rates have failed to keep pace with the 60 percent increase in Maine’s minimum wage since 2017. While the Legislature approved a reimbursement rate this past spring for home-care and personal support specialists who work with the elderly, reimbursement rates for workers who care for Mainers with autism or intellectual disabilities remained flat.

In April, the Maine Department of Health and Human Services sought and received permission from federal regulators to earmark an additional $13 million to increase reimbursement rates for direct care workers by 10 percent. Although the pay boost was retroactive to March 1, it expired at the end of May.

Ellis Baum, regional director at Residential Resources Inc., which operates 15 group homes in Greater Portland, called the three-month increase “a ridiculous timeframe because the virus hasn’t stopped since May 31, particularly in southern Maine, where it is still spreading.”

Residential Resources has had four residents and an equal number of staff test positive for COVID-19, with three of the residents’ cases occurring at the same home. All have since recovered, but Baum said the pandemic has imposed new, high-stress responsibilities on workers who are not medical clinicians.

His agency received a forgivable loan through the Paycheck Protection Program passed by Congress, which enabled them to pay some of the additional staff salaries but not cover other costs for PPE, new technology and other changes.

“We are already in a situation with inadequate funding and then you pile this on with the virus, it puts agencies in a difficult situation,” Baum said.

Florida - State Mulls More COVID-19 Testing at Homes for Disabled
By Christine Sexton, The News Service of Florida, July 9, 2020
Gov. Ron DeSantis’ administration appears poised to address rising criticism over its handling of COVID-19 in group homes that take care of residents with intellectual and developmental disabilities.

The deadly respiratory disease has shown itself to be efficient at moving rapidly through prisons, jails, nursing homes and assisted living facilities. But it also can be a problem for the places where people with disabilities live.

One of the ongoing complaints is a lack of testing in group homes. In response, the DeSantis administration said this week it is “evaluating options” to expand testing for staff members and residents at the facilities.

The agency already tracks COVID-19 cases at more than 2,000 licensed group homes that it
licenses. While the DeSantis administration started making available the details of testing information at nursing homes and ALFs, it has not disclosed that data for group homes.

The potential changes highlight how Florida officials have handled the coronavirus outbreak differently between facilities that serve seniors and people with disabilities. Group homes were not included in recently passed emergency rules that require nursing homes and assisted living facilities to test staff members every two weeks. The state is providing free tests to nursing homes and ALFs to carry out the new policy.

Georgia - Civil Immunity for COVID-19 Claims Extended for Healthcare Facilities
JD Supra, July 9, 2020

The Georgia COVID-19 Pandemic Business Safety Act (the “Bill”), which Governor Kemp is expected to sign the Bill into law, would provide civil immunity from certain liability claims related to COVID-19. The Bill follows Governor Kemp’s April 14, 2020 Executive Order for “Designation of Auxiliary Emergency Management Workers and Emergency Management Activities,” which similarly limits the liability of employees, staff, and contractors of healthcare institutions and medical facilities during the COVID-19 pandemic.

Pursuant to the Bill, no healthcare facility, healthcare provider, entity, or individual, may be held liable for damages arising out of certain COVID-19 liability claims accruing until July 14, 2021, but not to any causes of action thereafter. The Bill does not protect facilities against gross negligence, willful and wanton misconduct, reckless infliction of harm, or intentional infliction of harm. Further, in order for healthcare facilities to be afforded a rebuttable presumption that any potential future claimant assumed the risk, facilities must post a sign containing the following warning, in at least one-inch Arial font, placed apart from any other text:
Under Georgia law, there is no liability for an injury or death of an individual entering these premises if such injury or death results from the inherent risks of contracting COVID-19. You are assuming this risk by entering these premises.

The term “healthcare facility” is defined to include hospitals, skilled nursing facilities, personal care homes, intermediate care facilities, ambulatory surgical centers, and home health agencies.

South Carolina - Dozens of Staff, Clients at the Whitten Center Test Positive for COVID-19
By Jonathan Limehouse, Index-Journal, July 3, 2020
Sixteen percent of the staff and clients at the Whitten Center have been infected by COVID-19.
Mary Poole, state Department of Disabilities and Special Needs’ director, confirmed the Whitten Center had few COVID-19 cases until two weeks ago when the current surge began, which mirrored the conditions on the ground in Laurens County in general, she said. Currently, 39 consumers — a term the center uses for its client base — and 57 staff members have been infected by the virus.

Since the infection surge began two weeks ago, Poole said some of the earlier infected people will soon be coming out of quarantine.

“Hopefully, this will start lowering the net infection cases, as well as permit staff to start returning to work,” she said.

This is the state Department of Disabilities and Special Needs’ second major surge in COVID-19 cases at one of its five intermediate care facilities in South Carolina. The department’s Pee Dee Regional Center in Florence had a similar surge in
April, which was recently reduced to zero. Poole said that center’s number of cases also mirrored the conditions of the county, and in April, Florence County would have been classified as a hot spot for COVID-19.

“Whitten is using the same fundamental infection control protocols to control its current surge in cases,” she said.

Poole also said the Whitten Center staff has responded by covering the shifts of those that have tested positive for COVID-19. She said the state Department of Disabilities and Special Needs will be using resources from other regional centers as needed and that there is no shortage of personal protective equipment available to staff.

New York - Families Say Group Home Residents Suffer Because New York Failed To Act
By Beth Adams, WSKG (NPR, PBS), July 10, 2020
At 22, Jared Kaiser has spent half of his life in a group home. He is on the autism spectrum. He also has bipolar disorder and attention deficit hyperactivity disorder.

His mother, Jerri Lynn Sparks, said he needs to be in the structured setting of a group home because around the time Jared transitioned into puberty, he started acting out in a violent and dangerous way.

“It was the most heartbreaking decision I ever made,” she said, “but it was one that was for his safety and that of my other children.”

Before the pandemic, Jared came home every Sunday and the family would go on outings together — boat trips on the Erie Canal, meals in restaurants. Sparks said her son, like others on the autism spectrum, is attached to his routines and they help him remain calm and happy.

But over four months of Sundays have passed since Jared and his family last spent that kind of time together.

“Coronavirus … it changed our lives,” Jared said.
According to the New York state Office for People With Developmental Disabilities, 2,544 of the roughly 38,000 people who live in group home residences across the state have tested positive for the virus as of July 6, and 384 of them have died from COVID-19.

To limit further infection, families were not allowed to visit group homes in the first three months of the pandemic, and residents couldn’t go out.
Gov. Andrew Cuomo lifted the visitation ban on June 16.

Social distancing and face covering requirements are in place, as well as any other guidelines laid out by each facility.

The Hillside Family of Agencies owns and operates the Macedon group home where Jared
has lived for the past 11 years. A spokesperson for the nonprofit said the state allows some latitude in determining the durations of family visits, and how and where they take place.

At Jared’s residence, family visits are limited to the front yard for one hour at a time, according to his mother.

“He can go on an isolated hike where he has to stay 6 feet apart from the group home staff only. I can’t go on the hikes,” said Sparks. “I can’t take him off the property; I can’t visit with him inside his group home. I have to stay 6 feet apart from my son, masked, outside, for one hour. I can’t hug him. I’ve not been allowed to hug my son for over four months.”

Sparks called the restrictions unnecessary and heartless. She said Jared and his four housemates have behavioral challenges, but they’re not medically fragile. She said he understands and complies with rules like mask wearing.

“He told me he feels lonely, he feels bored, and he doesn’t understand,” Sparks said. “He can see, when he goes on van rides, all the other people out buying ice cream at the shops and walking along the Erie Canal and he feels keenly that he is being treated differently.”

Maria Cristalli, president and CEO at Hillside, said in a statement that the organization understands parents’ pain and frustration with the restrictions. She said they have been working closely with families to arrange visits while continuing to follow the necessary safety protocols.

What's Happening In Your Community?

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VOR Bill Watch:
Click on blue link to view information about the bill


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. 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.)
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