July 24, 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
July 26, 2020 is the 30th Anniversary of the Americans with Disabilities Act (ADA)
The A.D.A. at 30: Beyond the Law’s Promise

The New York Times has published a series of articles that explore how the Americans With Disabilities Act has shaped modern life for people with disabilities in the 30 years since it was passed.

Unfortunately, the people with the most severe intellectual and developmental disabilities, severe autism, self-injurious or aggressive behaviors, and complex medical disorders have once again been left out of the discussion.

As we celebrate all that the ADA has done for people with disabilities, we cannot help but be disappointed that those with the most severe disabilities remain marginalized by the non-disablied members of our society, and by the disability community itself.

The Full Color Edition of June, 2020 VOR Voice
is available for download now
National News:
How Much Fiscal Relief Can States Expect From the Temporary Increase in the Medicaid FMAP?
By Robin Rudowitz, Bradley Corallo, and Rachel Garfield, Kaiser Family Foundation, July 22, 2020

The economic consequences of the coronavirus pandemic have led to historic levels of job loss in the United States and severe declines in state revenues. Medicaid is a countercyclical program, so during economic downturns more people lose income and will qualify for Medicaid at a time when it is difficult for states to support increased program spending. The Families First Coronavirus Response Act (FFCRA) provided a 6.2 percentage point increase in the federal share of Medicaid spending with requirements to maintain eligibility and provide continuous coverage for Medicaid enrollees. The Federal MedicaFMAP increase included in the FFCRA was designed to provide broad fiscal relief to all states; however, the current level of aid may be small relative to state revenue losses and projected shortfalls, and the duration of the aid is not certain. It is likely that without an increase in federal support, states will need to make large budget cuts in many areas of the budget, including Medicaid, to meet balanced budget requirements. Without an extension in declaration of the public health emergency (PHE) set to expire at the end of July, the FMAP increase could end on September 30, 2020 (the end of federal fiscal year 2020 but partway through most state fiscal years), further deteriorating state finances.

This brief examines how much fiscal relief states can expect from the increase in the FMAP under FFCRA under different assumptions about the duration of the relief, how the FMAP increase provides broad fiscal relief to states and the factors that affect how much relief is available across states.

FEMA Sends Faulty Protective Gear to Nursing Homes Battling Virus
By Andrew Jacobs, NY Times, July 24, 2020

Expired surgical masks. Isolation gowns that resemble oversize trash bags. Extra-small gloves that are all but useless for the typical health worker’s hands.

Nursing home employees across the country have been dismayed by what they’ve found when they’ve opened boxes of protective medical gear sent by the federal government, part of a $134 million effort to provide facilities a 14-day supply of equipment considered critical for shielding their vulnerable residents from the coronavirus.

The shipments have included loose gloves of unknown provenance stuffed into unmarked Ziploc bags, surgical masks crafted from underwear fabric and plastic isolation gowns without openings for hands that require users to punch their fists through the closed sleeves. Adhesive tape must be used to secure them.

Health regulators in California have advised nursing homes not to use the gowns, saying they present an infection-control risk, especially when doffing contaminated gowns that must be torn off.
Some nursing homes have received masks with brittle elastic bands that snap when stretched.
None of the shipments have included functional N95 respirators, the virus-filtering face masks that are the single most important bulwark against infection.

“People hate to complain about personal protective equipment they’re getting for free but many of these items are just useless,” said Brendan Williams, president of the New Hampshire Health Care Association, which has been fielding a flurry of calls about the defective gear from nursing homes it represents. “It’s mystifying that the government would think this is acceptable.”

The Federal Emergency Management Agency began shipping the masks, gowns and gloves this spring to 15,000 nonprofit nursing care facilities whose limited finances have made it difficult to buy protective equipment on the open market.

Schools Want IDEA Liability Protections From Congress
By Michelle Diament, Disability Scoop, July 20, 2020
Concerned that the pandemic will prompt an onslaught of special education litigation, school leaders want federal lawmakers to grant them liability protections related to their obligations under the Individuals with Disabilities Education Act.

AASA, The School Superintendents Association, as well as the National School Boards Association and the Association of Educational Service Agencies are calling on Congress to include the protections in the next COVID-19 response legislation.

In a 21-page report, the three groups said that surveys of school leaders across the nation show growing concern about “unparalleled rates of litigation” as schools struggle to follow through with students’ individualized education programs during the pandemic.

“Congress must act swiftly to provide liability protection to districts around IDEA,” reads a
statement from Daniel Domenech, executive director of AASA, in the report. “District leaders need to be focused on addressing learning loss, not preventing litigation. This is not a free pass for districts to stop serving students with disabilities appropriately. Instead, this is an opportunity to provide reasonable, temporary, litigation protection for the vast majority of districts that are doing everything feasible to meet IDEA during the pandemic, but simply cannot meet every requirement exactly as intended for every single child.”

Caring for an Adult Child With Disabilities in Retirement
By Connie Kargbo and Christopher Booker, PBS News Hour, Jul 19, 2020
This weekend PBS broadcast the first segment of a new series, ‘Rethinking Lifespan.’

Hundreds of thousands of people with intellectual and developmental disabilities in America are living and receiving care at home. But their aging caregivers, many of whom are parents or siblings, are worried about who will continue to care for their loved ones when they are gone.

Excerpts from the program:

"[T]here are estimates that between 800,000 and one million Americans over 60 are providing such care for a loved one. And many are not prepared for the day they can no longer do it."

"[A]s people live longer, including those with intellectual and developmental disabilities, there is
increased pressure on family caregivers, who often are not paid.

There are state and federal programs available, the majority of which are funded through Medicaid – but the need for support often outweighs the availability of services.

As a result, across the country close to 600,000 people are on waiting lists for community and home based-services like skilled nursing care or physical therapy, according to the health non-profit Kaiser Family Foundation."

State News:
Connecticut - State Will Limit Coronavirus Relief To Nonprofits
By Christine Stuart, CT News Junkie, July 21, 2020
Nonprofit organizations that have been struggling to take care of the developmentally disabled and maintain an adequate supply of personal protective equipment were dealt another blow Monday by Gov. Ned Lamont’s administration.

The Department of Developmental Services, which administers funding to nonprofits who care for the developmentally disabled through state contracts, told them not to expect any coronavirus relief funds if they received a Paycheck Protection Program grant through a bank.

“The state has decided that providers that received PPP loans may not receive CRF [Coronavirus Relief Funds],” Scott McWilliams, chief fiscal officer, wrote. “Therefore, DDS will ask providers to report how much they have received in PPP loans and will recoup CRF payments from any provider that received PPP.”

Gian Carl Casa, president and CEO of CT Community Nonprofit Alliance, said that for the organizations who received PPP loans, there were limits on what the funds could pay for.

“They do not cover the cost of personal protective equipment (PPE), for example. Additional state
funds were to cover these and other extraordinary costs. While some of the PPP loans may be forgiven, the federal rules have changed repeatedly and nonprofits may need to pay them back,” Casa said.

He said nonprofits are still on the front lines of providing mental health care, substance abuse treatment, and residential services for people with developmental disabilities.

“Our members have struggled to find PPE to protect staff and clients, revamped technology to provide telehealth services, reconfigured offices to allow for safe social distancing, purchased additional cleaning supplies and increased costs for food — all unbudgeted costs that are not covered by PPP or current state funding,” Casa said.

He said this policy will likely mean there will be fewer nonprofits and service providers in the future.

Massachusetts - Administration Keeping Records Hidden and Declining Comment on COVID-19 in DDS System
By Dave Kassel, The COFAR Blog, July 21, 2020

The Baker administration seems to be going out of its way to avoid providing information to us regarding the impact COVID-19 has had on persons with intellectual and developmental disabilities in Massachusetts.

We have four outstanding Public Records Requests with three state agencies – the Executive Office of Health and Human Services (EOHHS), the Department of Developmental Services (DDS), and the Department of Public Health (DPH). In none of the cases have we received responsive documents.
Administration officials also don’t appear even to want to talk about their response to the pandemic. Neither HHS Secretary Marylou Sudders nor DDS Commissioner Jane Ryder have responded to our repeated questions over the past several months about the lack of mandatory testing of staff in the DDS system for COVID-19.

Ryder also has refused to respond to our questions about the administration’s apparently haphazard policy on retesting of persons in the system or the slow pace of testing of both residents and staff.

For instance, one parent of a resident in a state-operated group home said his daughter has been retested 9 times in her group home since April, and has been negative each time. Meanwhile, approximately 1,400 residents in the DDS system haven’t even been tested once.

We are concerned that if a second wave of the virus hits Massachusetts, DDS’s lack of a coherent policy on retesting could be tragic.

As we have reported, DDS does not require staff to be tested even though it is likely that much of the spread of the virus in group homes has been caused by asymptomatic staff.

South Carolina - Whitten Center's Positive COVID-19 Cases Rise to 190, Including 5 Deaths, Amid Outbreak
By Jonathan Limehouse, Index-Journal, July 23, 2020
COVID-19 cases continue to rise at the Whitten Center as 68 residents and 122 staff members have tested positive. So far, three residents and two staff members have died of COVID-19.

Of Whitten’s total 190 positive cases during the outbreak, 23 of them are still less than 15 days from their initial COVID-19 positive test date, said Patrick Maley, the state Department of Disabilities and Special Needs’ deputy director.

“This is positive and indicative the outbreak is slowing significantly,” he said.

As a point of comparison, Maley recalled how the peak of the outbreak was about July 1 with cases less than 15 days from their initial COVID-19 positive test in the 130s.
The Whitten Center has 44 residents who have recovered, meaning they have been medically cleared because of quarantine time and are no longer exhibiting any symptoms. Nine residents and two staff members are currently hospitalized with the new coronavirus. With a total of 427 full-time employees and 184 residents, almost one-third of the campus’s population has tested positive for COVID-19 amid the outbreak.

“As said before but can’t be said enough, the Whitten staff exhibited courage, bravery and commitment to serve our residents while overcoming many challenges during this COVID-19 virus outbreak,” Maley said.

South Carolina - 31 Coastal Regional Center Employees Test Positive for COVID-19
By Jared Kofsky, Live 5 News, July 20, 2020
A sign outside the Coastal Regional Center near Ladson reads “heroes at work,” but the agency in charge of the facility confirms that a number of those heroes are testing positive for the coronavirus.The South Carolina Department of Disabilities and Special Needs, which operates the center on Miles Jamison Road, says that an employee was diagnosed with COVID-19 on June 14.

In the time since, 30 more workers and 10 individuals under the facility’s care have tested positive.

As of Thursday, an additional 20 employees were out awaiting test results while an extra 40 people under the Coastal Regional Center’s care were under in-house quarantine, according to DDSN.
The increase in cases caused concern among some employees who fear bringing coronavirus home to their families.
"The virus is very contagious and our workforce are truly heroes for their commitment to those we serve," said DDSN Associate State Director of Operations Rufus Britt.

[T]he facility serves 141 individuals with varying abilities and employs a total of 355 people.

Nice Stories of the Week:
She Gave Up One Family for Another in Lockdown
By Darren Iozia, The Telegraph, July 22, 2020
Tiffany Proffer-Jones and her co-workers at Elm City Center found out in March that the agency was suspending its day training because of the COVID-19 pandemic — and also needed volunteers to live with those in the agency’s care during the pandemic-related shutdown.

“That Friday we were told at 3:30 that, if we were going to volunteer, we had to be ready to go by Saturday at 11,” Proffer-Jones said.

Elm City Center is a community-based agency in Jacksonville that provides vocational, residential and social services to those with disabilities.

Thanks to the volunteers, including Proffer-Jones, three Elm City group homes each had two Elm City employees living there with residents during the lockdown.

Melissa Baird, Steve Wilson, Brittany Plowman, Jenny Weger, Ellen Baldwin, Melissa Grissom,
Dawn Suing, JoAnna Luttrell and Annette Rees, also of Elm City, volunteered their time to live at the group homes.

Proffer-Jones spent 72 days of the state’s shutdown living with five of the 13 people in Elm City’s care, leaving her 12-year old daughter with the girl’s father while she did.

Her daughter also visited the home where Proffer-Jones was staying so she could say hello from the safe distance of the car, Proffer-Jones said.

South Korea - Refurbished Workshop Offers Wedding Pastry Gifts
By Sherry Hsiao, Tapei Times, July 23, 2020

The Down Syndrome Foundation yesterday unveiled its newly redecorated sheltered workshop in Taipei’s Datong District (大同), inviting couples to order their wedding pastries from the shop. The foundation’s Abrazo sheltered workshops provide job opportunities to people with Down syndrome, as well as those with disabilities.

The Chengde Road branch opened in 2014, and with its refurbished space, the foundation said it hopes to tap into the multimillion-dollar wedding pastry market.

More than 100,000 couples wed each year in Taiwan, it said.

Now that the COVID-19 situation in Taiwan has eased, weddings are starting to be held again, she said, urging couples to order their wedding pastry gift box sets from Abrazo.

The pandemic has had a big impact on the foundation’s fundraising efforts, foundation chairman Lin Cheng-hsia (林正俠) said. To introduce a “new experience” and a “new start,” the foundation decided to redecorate the space last month, he said, calling the Chengde store a “flagship” among wedding pastry shops run by social welfare groups.

When customers who are engaged to be married enter the shop, they provide individuals with Down syndrome an opportunity to learn about wedding customs, he said.

Through the workshop’s makeover, the foundation hopes to offer the employees a joyful environment, he said, adding that he believes it would improve their learning and cognitive abilities.

What's Happening In Your Community?

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Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

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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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