July 17, 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)
National News:
Potential MFAR Medicaid Cuts Back in Spotlight as Wide Swath of Health Leaders Call for More Relief
By Maggie Flynn, Skilled Nursing News, July 14, 2020

A slew of governmental and health care organizations called on the federal government to boost its share of Medicaid support — and to revoke a controversial proposed rule that would have overhauled how some states drew down federal dollars.

The organizations — which represent political officials from the local to the state level and care settings from hospitals to skilled nursing facilities — wrote to Senate Majority Leader Mitch McConnell, Senate Minority Leader Chuck Schumer, Speaker of the House Nancy Pelosi, and House Minority Leader Kevin McCarthy this past week, calling for an enhanced federal medical assistance percentage (FMAP) for Medicaid in the next COVID relief bill.

The March 18 Families First Coronavirus Response Act included an FMAP increase of 6.2 percentage points, and the funds were available to states from January 1; while the signatories to the July letter expressed support for the increase, they argued that more aid will be needed given the scope of the COVID-19 emergency.

That original increase led to some states taking action to boost Medicaid rates for nursing homes, but the allocation of the additional federal matching funds was up to states, and not all of them opted to use the funds for that purpose.

The organizations signing the July 10 letter — which included the major nursing home trade groups American Health Care Association and LeadingAge — called for an additional FMAP increase of “at least 5.8 percentage points,” also retroactive to January 1, that would remain in effect until September 30 regardless of unemployment.

They also called for maintaining what would then be the 12% increase to FMAP until the national unemployment rate in the U.S. drops below 5%. As of June, the unemployment rate sat at 11.1%, according to the U.S. Bureau of Labor Statistics.

Citing The Pandemic, Feds Delay New Medicaid Waiver Rule
By Michelle Diament, Disability Scoop, July 16, 2020
The Trump administration is holding off on implementing a Medicaid rule establishing a new standard for what counts as home- and community-based services for people with disabilities.

In a letter to state Medicaid officials this week, the Centers for Medicare & Medicaid Services said it would delay the compliance deadline for a 2014 regulation detailing criteria that programs must meet in order to be considered community-based and eligible to be paid for through Medicaid home- and community-based services waivers.

Under the rule, home- and community-based settings must be places that individuals choose to live that are integrated in and provide full access to the community. They also must offer privacy, dignity and respect and allow people with disabilities the ability to make independent choices about their daily activities, physical environment and who they are in contact with.

The criteria apply to homes as well as day and job-training programs and other non-residential offerings provided through waivers.

Originally, there was a five-year transition period for states to come into compliance with the regulation, but the Trump administration already extended that deadline by three years to 2022.
Now, the administration is pointing to the “unprecedented challenges” presented by COVID-19 as it announces another delay, this time to March 17, 2023.

“States’ stay-at-home and/or safer-at-home orders and the process of social distancing have made it difficult, if not impossible, for states to accurately evaluate how an individual is experiencing community integration in current HCBS settings,” wrote Calder A. Lynch, deputy administrator and director of the Center for Medicaid & CHIP Services. “These necessary directives have seriously impacted not only the measurement of community integration for individuals, but the intent of the settings rule to ensure that individuals with disabilities and older adults have the opportunity to be active participants in their communities.”

Group Home Residents With Developmental Disabilities More Likely To Die From COVID-19
By Shaun Heasley, Disability Scoop, July 13, 2020
Below is an article originally covered in the VOR Newsletter on June 26. We received several links to this article this week, and the information certainly bears repeating.

People with developmental disabilities who live in group homes are significantly more likely than others to contract the coronavirus and die from it, a new study finds.

Researchers looked at the experiences of 20,431 people with intellectual and developmental disabilities residing in group homes in New York state as compared to those of the state’s general population from the start of the pandemic through May 28.

Among group home residents, there were 7,841 cases of diagnosed COVID-19 per 100,000 people. That figure was substantially lower — 1,910 per 100,000 — for the state as a whole.
Moreover, people with developmental disabilities in the study who contracted COVID-19 were nearly twice as likely to die. Researchers found that 15 percent of group home residents who got the virus died compared to 7.9 percent of other coronavirus patients in New York state.

The findings published online in the Disability and Health Journal in late June come from researchers who were behind a May study which found a much higher COVID-19 fatality rate among those with intellectual and developmental disabilities.

State News:
Arkansas - Human Development Sites Fight Virus; Families Fret
By Andy Davis & Jeannie Roberts, Arkansas Democrat Gazette, July 17, 2020
The Conway Human Development Center -- one of five state-run facilities that house people with developmental disabilities -- is continuing to see cases of covid-19 rise.

As of Thursday, the Conway facility has had a total of 143 cases involving patients and employees, according to Amy Webb, an Arkansas Department of Human Services spokeswoman. There have been no deaths from covid-19 at the Conway center.

Of that number, 97 patients and 17 employees are still considered active cases.

An additional 17 patients and 49 employees are quarantined or under investigation because they either reported an exposure or were identified through contact tracing as potentially being exposed, Webb said.

A review of the state Department of Health's report on nursing homes and congregate settings, shows that the outbreak in the Conway center began June 15 with one employee who tested positive for covid-19.
On Thursday, the state Board of Developmental Disabilities Services, which oversees the state's five human development centers, passed a resolution that allows the board's chairman, Darrell Pickney, to meet with Gov. Asa Hutchinson and Health Department officials to develop a plan that would allow "an immediate way" for family members to visit loved ones at the centers.

Pickney told the board that he has heard from numerous parents who are desperate to visit their family members in the facilities.

"I will tell you that 100% are saying that they want safe visitation," Pickney said. "We're not going to be asking for anything that's unsafe."

Texas - Investigation Underway into COVID-19 Outbreak at State Living Center
By Kirsten Crow, Corpus Christi Caller Times, July 17, 2020
An investigation is underway into the COVID-19 outbreak that officials say sickened more than 250 staff and patients at Corpus Christi’s State Supported Living Center.

In all, 105 residents and 146 staff members tested positive for the virus, according to the Texas Health and Health Services Commission. That would be more than half of the local state living center’s estimated 190 residents, and about 17 percent of its 850 staff.

The agency’s regulatory services division is currently assessing the living center’s “compliance with all applicable health and safety rules,” wrote commission spokeswoman Christine Mann in an email to the Caller-Times on Thursday.

A report on the findings at Corpus Christi’s living center was not yet available.

The 13 state-run living centers and 10 state-run psychiatric hospitals underwent mass testing by
governor’s order — issued in late May — similar toan earlier mandate for mass testing at nursing homes.

All state living centers that reported at least one case of COVID-19 are under investigation, according Mann’s email.

Commission records current as of Wednesday show 15 of the 23 state-run facilities having reported at least one case — cumulatively, 459 of about 4,600 patients testing positive for the virus. Of the 459 people diagnosed, 179 have recovered, according to the documents.

Data on infections among staff is not included in the online records.

Florida - 11 Staff, Residents of Jacksonville Group Home Test Positive for COVID-19
News 4 JAX, July 11, 2020
With nine more cases this week, 11 staff members and residents at a Jacksonville group home for people with developmental disabilities have tested positive for COVID-19.

Arc Jacksonville Executive Director Jim Whittaker told The News Service of Florida on Friday that six residents and three staff members at the Bert Road group home tested positive for the virus this week.

The Duval County Health Department tested all the residents and staff members at Arc facilities after two residents were taken to the hospital the first week in July.

The residents at the Bert Road group home who tested negative have been moved to apartments.
The residents who tested positive -- all of whom are asymptomatic -- have remained at the home and are isolated “like a sickbay,” Whittaker said.
In addition to the positive cases at the Bert Road facility, two staff members at another Arc
Jacksonville group home have tested positive, Whittaker said.

No residents at the St. Nicholas group home had tested positive as of Friday.

“The results are trickling in,” Whittaker said.
The state has not made free testing available to the more than 2,000 group homes or institutions that provide care to people with intellectual and developmental disabilities.

Missouri Law Latest to Allow Cameras in Assisted Living Residents’ Rooms
By Kimberly Bonvissuto, McKnight's Senior Living, July 17. 2020
A Missouri law set to take effect in August allows assisted living community residents to install visible electronic monitoring devices in their rooms, allowing families a window into their loved ones’ care. The law applies to other facility types as well.

Gov. Mike Parsons signed the “Authorized Electronic Monitoring in Long-Term Care Facilities Act” on Tuesday, allowing residents of residential care facilities, assisted living facilities, intermediate care facilities and skilled nursing facilities in the state to install equipment owned and operated by
the resident or legal guardian in their rooms.

LeadingAge Missouri CEO William B. Bates said the new law “resolves five years of legislative debate on challenging issues for long-term care residents, families and facilities surrounding resident room electronic monitoring.”

Oregon - New Law Bars Discrimination Against People With Disabilities During Pandemic
By Lauren Dake, Oregon Public Broadcasting, July 11, 2020

A 45-year-old woman who loved going to Starbucks with her friends, writing letters and listening to music went to the emergency room in Oregon City in March because she had a fever. One of the first questions medical professionals asked was whether the woman, Sarah McSweeney, had signed a document allowing physicians to withhold medical care.

“Which is a weird question when the only thing the person has is a fever,” said Emily Cooper, legal director for Disability Rights Oregon. 

Hospital personnel also immediately asked questions about the woman’s “quality of life,” Cooper said.
“Talking about quality of life is essentially code for ‘your life or quality of life does not have the quality or value I recognize,’” Cooper said.

Three weeks later, McSweeney died while in the hospital.

Even before the arrival of COVID-19, people living with disabilities — McSweeney was non verbal and in a wheelchair — had to worry their lives could be seen as less valuable by medical professionals who do not know them. Now, in the midst of a pandemic where medical personnel are trying to conserve scarce equipment such as ventilators and emergency beds, the fear is exacerbated.

On top of concerns about rationing care and equipment, add another: Hospitals have been preventing visitors, in an effort to curtail the spread of coronavirus. Those policies mean people like McSweeney and dozens of others have not been allowed to have guardians with them in the hospital.

A bill signed by the governor this week, Senate Bill 1606, will change that. The bill requires hospitals to let a guardian or advocate be in the hospital with those who need the support.

Missouri - Tele-Medicine Service Available to Missourians with Intellectual, Developmental Disabilities
By Emma James, KSHB-41, July 14, 2020
Medical professionals say people with intellectual and developmental disabilities are five times more likely to contract Covid-19.

A tele-medicine service called Station MD is now available to all of Missouri's Medicaid Waiver recipients. The remote practice recently announced a partnership with the state.

The service connects people with IDD and their Director Support Professionals with licensed physicians with the click of a button.

Dr. Maulik Trivedi said the goal of the service is to keep people with IDD at home and out of hospitals and doctor's offices, which helps decrease their risk of contracting COVID-19.

"What we saw was unnecessary visits to the emergency room or urgent care for this population, and we really thought we could treat them better," Trivedi said.
"If you can stay at home right now that's the most important thing, especially this population, they are more vulnerable to COVID."

The Center for Developmentally Disabled in Kansas City, Missouri, began using the service in April. Chief Program Officer Sarah West said the organization jumped on board as soon as possible because of the benefits to staff and people with IDD.

"Our staff are not medical professionals and when it comes to someone having a medical issue, just having the option for staff to get online with Station MD to ask any question and see if someone needs to get seen in an ER," West said. "The Station MD doctors are able to see people and send prescriptions directly to the pharmacy, they're able to send us documentation of the visit."

Puerto Rico - Urgent Need of Data on Puerto Rico’s Adult Population With Intellectual Disabilities
Non-profit organizations urge the population to fill out survey
The Weekly Journal, July 14, 2020
Given the scarcity of updated data on the population of adults with intellectual disabilities in Puerto Rico, these citizens face the lack of accessible services, supportive community homes, and job opportunities. Likewise, the organizations that provide aid and services to this population lose access to economic funds to continue their programs.

That is why more than 15 organizations have joined the Intellectual Disability Initiative, organized by the Puerto Rican digital platform Sociants, which seeks to collect data on the needs of the adult population with intellectual disabilities on the island.

Esther Caro, executive director of Asociación Mayagüezana de Personas con Impedimentos, Inc. (AMPI), explained that “we need to expose the gaps in social services that are not currently available to this population. We want to promote the employability and development of community homes enabled for adults with intellectual disabilities. To achieve this, we need data.”

Caro encourages family members or caregivers of adults with intellectual disabilities to share the needs of these individuals through the initiative.=
First, they must visit www.MisNecesidades.org to register the adult with intellectual disabilities on the platform; once their information is registered, they will be able to identify their needs through the survey "Intellectual Disability Initiative".

“Through the survey, we will be able to collect information on the level of functionality of the individual, where they are and what services they receive, in order to facilitate case management and strengthen statistics for this population in Puerto Rico,” said social worker Karla Vargas, project manager at Sociants.

Initiative Develops a New Support Network
Vargas stressed that “the lack of connection and coordination between organizations and available resources in Puerto Rico has resulted in an impoverishment of the development of adults with intellectual disabilities, as well as their social inclusion.”

ACLU and SEIU Surprisingly and Confusingly Gang Up on Congregate Care for the Developmentally Disabled during COVID Crisis
by Dave Kassel, COFAR Blog, July 13, 2020

The American Civil Liberties Union (ACLU) and the Service Employees International Union (SEIU) are usually strong advocates of accountability and transparency in government.

That’s why it is surprising that both of those organizations appear to be using the coronavirus pandemic to further a longstanding agenda, which we never knew they shared, to privatize services to people with intellectual and developmental disabilities.

It’s particularly surprising that the SEIU, a human services employee union that represents caregivers in the state’s two remaining developmental centers, would be on board with closing down state-run care facilities.

In a petition filed June 23 with the U.S. Department of Health and Human Services (HHS), the ACLU, SEIU, and a number of other advocacy organizations appear to start off on the right track in criticizing the federal government for its mismanaged response to the pandemic.

The petition identifies nursing homes, Intermediate Care Facilities for the developmentally disabled (ICFs), and group homes as sites of large numbers of COVID-19 infections and deaths that could have been prevented with better guidance for infection control, more testing, and better patient and worker protections.

But the petition then goes on to make a number of, at times, poorly conceived and even confusing claims and recommendations that ultimately appear intended to support a privatized care agenda.
At least some of the confusion centers around group homes, which the petition lumps together with ICFs as sources of “congregate care.”

The petition suggests that among the causes of the infections and deaths is the federal government’s failure “to divert people from entering nursing homes or other congregate settings” or to increase discharges from those settings “to the community.” The argument the petition makes is that reducing the population in all of those facilities would “make social distancing possible.”

The petition defines congregate settings as including ICFs, psychiatric facilities, and group homes. Yet, group homes are considered part of the community-based system of care in Massachusetts and other states.  As a result, it isn’t clear what the ACLU and SEIU mean in stating that people living in group homes would be among those in congregate settings who should move “to the community.”

The petition, moreover, calls for reducing the population of nursing homes and congregate settings by 50 percent. Should HHS neglect to act within three weeks to enact that and other suggested measures, the groups will sue, the petition states.

VOR, COFAR’s national affiliate, issued a statement sharply critical of the petition, maintaining that:

…the ACLU has cast its net too wide, and falsely claimed to represent the interests of everyone receiving federally funded services who is classified as elderly or who has intellectual and developmental disabilities. In doing so, it apparently assumes that all such persons look and feel alike and need the same supports and level of care.

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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