June 5, 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 and YOU:
VOR is a non-partisan non-profit organization. Our members are united by their advocacy to individuals with intellectual and developmental disabilities. We do not endorse candidates or political parties.

Elected officials have tremendous influence over policies and appropriations for people with IDD and the services they receive. We try to keep our members informed of their positions, especially when they make those positions public.
Biden Urges Equality For People With Disabilities
By Michelle Diament, Disability Scoop, June 2, 2020

The presumptive Democratic nominee for president is calling for more access to community-based services, competitive employment and greater disability representation in government.
Former Vice President Joe Biden is pushing a slew of changes in an effort to bring about “full equality” for those with disabilities.

In his disability plan released late last week, Biden said he wants to boost Supplemental Security Income benefits, fully fund the Individuals with Disabilities Education Act, phase out subminimum wage and increase support for direct care providers as well as family caregivers.

He also promises to back the rights of parents with disabilities and to direct the U.S. Department of Justice to review guardianship laws to ensure that individuals are able to exercise self-determination in line with the Americans with Disabilities Act.

Biden indicates that he would appoint a director of disability policy at the White House and said he would work to pass legislation guaranteeing the choice to receive services in the community that was affirmed by the Supreme Court’s Olmstead v. L.C. decision.

“As president, Biden will work with Congress to ensure that people with disabilities no longer have to wait for decades to access community-based services,” the plan states.

During the Democratic primaries, Biden refrained from issuing a disability plan even as other leading candidates made such issues a central piece of their platforms.

Trump’s campaign has not issued a policy plan specific to people with disabilities.

National News:
The Intellectual Disability Community Needs COVID Tracking
By Laura VanPuymbrouck and Sarah Ailey, The Hill, June 4, 2020
Despite some states showing a flattening of the curve of COVID-19, hot pockets of vulnerability continue to report increases in cases and deaths. But not all vulnerable populations are even counted. 

A recent report by the Chicago Tribune and ProPublica highlighted concerns of individuals with intellectual and developmental disabilities and their families. The report shows 21.5 percent of persons residing in large residential state developmental centers have tested positive for COVID-19. 

According to this report, Illinois has also recently started tracking infections in mid-size private residential settings, but infections and deaths in smaller community group homes are not being tracked. 

This is especially concerning as the Centers for Medicare and Medicaid Services halted regular inspections in early March to many of these care settings across the U.S. as they are overwhelmed during the pandemic crisis.
With reports from private advocacy groups suggesting people with IDD are dying at startling rates with little understanding of why, the lack of government tracking is alarming. 

There are over 400,000 people with IDD living in these small community group homes across the United States. Public health authorities need to take measures to protect this population. The Centers of Medicare and Medicaid committed to reinforce monitoring all reported cases and deaths of residents living in nursing homes by COVID-19.
But for smaller group homes, there are no national tracking or monitoring mechanisms in place to track COVID-19 and as a result these group homes are ripe for supporting the ramped spread of the virus.

Sen. Merkley, Colleagues Call for CDC Guidance on Reopening Long-Term Care Facilities to Visitors
Insurance News, May 30, 2020 /

Oregon's U.S. Senator Jeff Merkley, along with seven of his colleagues in the Senate, are calling on the Centers for Disease Control and Prevention (CDC) to issue specific guidance for when long-term care facilities can safely reopen their doors to visitors, and what steps long-term care facilities should take to ensure the safety of residents and family members when they do so.

"Significant restrictions on daily group activities and on in-person contact with family and loved ones are rightfully in place to protect residents and limit the spread of COVID-19 among particularly vulnerable populations," wrote the senators. "However, this sustained isolation is also impacting the mental and emotional well-being of residents and their families."

The senators noted that previous guidance that the CDC and Centers for Medicare and Medicaid Services released does not provide enough details for long-term care facilities to execute a plan to reopen to visitors safely.

"Fact and evidence-based guidance from CDC that prioritizes safety, and provides measurable benchmarks, realistic timelines, and clear direction to visitors would provide residents and families with a measure of much-needed clarity that they currently lack," wrote the senators. "Additionally, coordinated guidance from CDC and CMS that provides family members and loved ones with a plain language description of the safety protocols that they will be required to adhere to when in-person visitation resumes, along with an explanation of the importance of these protocols, will improve the likelihood that safety measures are understood and followed by facilities and visitors alike."

In addition to calling for robust guidance, the senators ask for details on how the CDC and Centers for Medicare and Medicaid Services will work to disseminate the guidance to long-term care facilities and the public. They also ask for specific details on the role of frequent testing in determining appropriate guidance for opening long-term care facilities to visitors.

Trump Administration Faces Pressure To Help Disability Service Providers
By Michelle Diament, Disability Scoop, June 5, 2020
Members of Congress are asking the Trump administration why federal money isn’t flowing to help disability providers and others funded by Medicaid who have been walloped by the pandemic.

Starting in March, lawmakers set aside $175 billion to assist health care providers as part of a pair of coronavirus relief bills. However, while disability advocates say billions from what’s known as the Public Health and Social Services Emergency Fund have been distributed, hardly any has been directed toward providers funded primarily by Medicaid.

The lack of federal aid is hitting agencies supporting people with developmental disabilities across the country especially hard, according to the American Network of Community Options and Resources, or ANCOR, a national trade group representing disability service providers.

Such providers are largely funded by Medicaid and they have seen sharp drops in revenue because they have not been able to offer day programs and other services during the pandemic. Meanwhile, providers have faced increased costs for staffing, personal protective equipment and other needs as a result of COVID-19.

A recent ANCOR survey of 689 organizations that support people with intellectual and developmental disabilities found that more than half only had
enough cash on hand to continue providing services for another five or six weeks.

Now, the Republican and Democratic leaders of the U.S. Senate and House of Representatives committees charged with overseeing Medicaid are asking for answers from the Department of Health and Human Services.

“We are concerned that the delay in disbursing funds from the Public Health and Social Services Emergency Fund (PHSSEF) for Medicaid-dependent providers could result in long term financial hardship for providers who serve some of our most vulnerable populations,” wrote Sens. Chuck Grassley, R-Iowa, and Ron Wyden, D-Ore., as well as Reps. Frank Pallone, D-N.J., and Greg Walden, R-Ore., in a letter this week to HHS Secretary Alex Azar.

“We must not let their financial insolvency due to the COVID-19 pandemic threaten access to essential care for these individuals,” the letter states.

The following article pertains to nursing homes, not Intermediate Care Facilities, Skilled Nursing Facilities, or HCBS waiver settings.
CMS ‘Ratcheting Up’ Nursing Home Penalties In Light Of 26,000-Resident, 450-Worker COVID-19 Death Toll
By James Berklan, McKnight's Long-Term Care News, June 1, 2020
Nearly 26,000 residents and 450 workers in U.S. nursing homes have died from COVID-19, federal authorities announced Monday afternoon while also declaring they would be increasing penalties for non-compliant providers.

Overall, more than 60,000 residents and 34,400 workers have gotten sick in the U.S., according to figures released by the Centers for Medicare & Medicaid Services and the Centers for Disease Control and Prevention.

The numbers represent just partial accounting under the federal agencies’ new reporting scheme. Figures for residents and workers are expected to climb significantly. Numbers will be updated later this week and posted for the public to peruse, CMS Administrator Seema Verma said.

“While many nursing homes have performed well and demonstrated that it’s entirely possible to keep nursing homes patients safe, we are outlining new instructions for state survey agencies and
enforcement actions for nursing homes that are not following federal safety requirements,” Verma said in a statement released shortly before addressing reporters Monday afternoon.

The agencies reported the numbers earlier to the nation’s governors.

“This data, and anecdotal reports across the country, clearly show that nursing homes have been devastated by the virus,” wrote CDC Director Robert Redfield and Verma to the governors in a letter dated Sunday.

According to that missive, the numbers reflect data submitted as of a week ago (May 24) — from about 80% of the nation’s roughly 15,400 nursing homes. Roughly one in four nursing homes had at least one COVID-19 infected patient and one in five had at least one death.

State News:
Massachusetts - DDS Residents have Tested Positive for COVID-19 at Higher Rate than General Population
By Dave Kassel, The COFAR Blog, June 1, 2020

Residents with intellectual and other developmental disabilities in group homes have tested positive for COVID-19 at a significantly higher rate than the general population in Massachusetts since the end of April, according to an analysis by COFAR.

The numbers appear to demonstrate the importance of maintaining safe conditions in the homes and testing all staff, particularly if the administration begins to loosen lockdown restrictions in coming weeks.
COFAR analyzed cumulative testing data provided by both the Department of Developmental Services (DDS) and the Department of Public Health (DPH). DDS tracks testing data for residents and staff in its residential facilities, and DPH tracks and publishes testing data for the general population on a daily basis.

COFAR found that on a cumulative basis, the COVID-19 positive rate of DDS residents was 18.4% between April 23 and May 26, while the positive rate in the general population was 12.5% during that same period. That’s a 47% higher positive rate for DDS residents.

While the high rate of COVID-19 infection in nursing homes is widely known, it hasn’t been reported in the media in Massachusetts that residents of DDS group homes have apparently also contracted the virus at a higher rate than the general population.

The number of deaths in DDS group homes has been lower on a percentage basis than in nursing homes, but that death toll is continuing to rise. As of May 28, there have been 87 deaths in the DDS system, up from 78 deaths ten days earlier.

It is not clear why the death toll has been relatively low in the DDS system. But it should not come as a surprise that the conditions that have caused the quick spread of the virus through nursing homes are similar to those that exist in DDS-funded group homes.
Group homes are small, household sized facilities in which DDS residents have been locked down since March. As such, a virus can spread quickly in a group home especially if it is introduced by an outside source — namely staff who are, in many cases, not being tested.

Maine - Group Homes make up the Largest Number of Coronavirus Outbreaks in Maine
By Matthew Stone, Bangor Daily News, June 2, 2020
There are now more than 40 active coronavirus outbreaks in Maine, with the addition of four more announced Monday.

And while outbreaks at nursing homes have accounted for some of the largest numbers of cases and more than half of Maine’s coronavirus deaths, group homes for people with intellectual disabilities have made up nearly half of the state’s outbreak sites, according to data from the Maine Center for Disease Control and Prevention.

Group home outbreaks are smaller than most of the nursing home outbreaks Maine has seen because they’re generally limited to a small number of residents in each home and the staff who care for them, but they’re at special risk for transmission of the coronavirus.
Of 42 active outbreaks listed by the Maine CDC on Monday, at least 18 were at group homes. The type of facility where some outbreaks occurred couldn’t immediately be identified.

An outbreak is defined as three or more connected cases in a single location. The locations of some of the state’s earliest and largest outbreaks — such as the Tall Pines nursing facility in Belfast and the Augusta Center for Health and Rehabilitation — are no longer considered active outbreaks because they have gone weeks without any new cases.

Missouri - Pandemic Highlights Serious Shortage Of Caregivers For Missourians With Disabilities
By Shahla Farzan, St. Louis Public Radio, June 2, 2020
Just a few months ago, LuAnn Cooper and her client Margie went on lots of outings together — exercising at the gym, grocery shopping, getting ice cream. 

But the pandemic put a stop to those trips.
Margie, who has a developmental disability, hasn’t been able to leave her home in Washington, Missouri, since March. 

People with intellectual and developmental disabilities often rely on in-home caregivers for help with daily tasks, including budgeting and preparing meals. These workers, known as direct support professionals, have become even more important while clients are isolated at home. But some say the pandemic is putting pressure on an already-fragile industry, weakened by low wages and high employee turnover.

She [Cooper] now helps care for seven adults with disabilities in two separate homes — cooking meals, cleaning, administering medication and bathing. Normally, she said, there should be at least two workers on duty per shift, but due to a staff shortage, she often works alone.

Juggling the care of three to four adults can quickly become a “running around kind of situation,” Cooper said.
“The challenge is when one in a wheelchair says, ‘I gotta go to the bathroom.’ Well, I have to totally help her, but I've got one that’s got to be in the shower,” Cooper explained. “I can't be in both places at one time.”

Even with record unemployment levels, organizations that serve people with intellectual and developmental disabilities in Missouri have struggled to recruit new workers. 

Because most direct support professional jobs are funded through Medicaid, worker pay largely depends on state funding. In Missouri, workers make about $10 an hour on average, compared to about $12 an hour nationwide.

Low wages can be a deterrent for applicants, said Mark Keeley, president and CEO of the St. Louis Arc.

“Most individuals who are looking for work can go work anyplace and make $15 an hour at Pizza Hut or Target — those jobs that are not required to help people with bathing, grooming and dressing,” Keeley said. “It's really hard to recruit staff that are committed to providing that level of care for minimal pay.”

Missouri Division of Developmental Disabilities offering Free Telehealth Services through August for Medicaid Waiver Recipients
By Kelsi Anderson, KSDK5-TV, June 3, 2020

Missourians with Medicaid waivers through the Division of Developmental Disabilities are now offered no-cost telemedicine services through August.The department announced Wednesday that in partnership with StationMD, a telehealth medical service, it has secured a contract to offer the services through Aug. 31.

Those who are eligible and preregistered can immediately begin using StationMD for any medical concerns. StationMD provides immediate virtual access to emergency medicine physicians who are specifically trained to care for people with intellectual and developmental disabilities, according to a press release.

The service is available 24/7 as an additional resource to use along with the care the patient's primary care physician provides. Individuals, family members and provider staff are encouraged to call for any medical questions or concerns regarding the eligible individual.

Physicians can assess patients through StationMD, including checking heart and lung sounds, the release said.

“In these challenging times, it is critical to care for our individuals from home as much as possible,” said Director of the Division of Developmental Disabilities Val Huhn in the release. “To be able to bring on a telehealth partner dedicated to the I/DD population is a big step forward. We’re excited about the partnership and what it means for those we serve.”

“Our doctors are all board-certified and specially trained in the care of individuals with I/DD," said StationMD Chief Strategy Officer Dr. Maulik Trivedi. "We are a resource for all types of medical concerns or questions; no call is too small. We’re here to help give you peace of mind from the comfort and safety of home.”

California - ‘Why Do We Always Get Hit First?’ Proposed Budget Cuts Target Vulnerable Californians
By Samantha Young, Kaiser Health News, June
California Gov. Gavin Newsom has proposed sweeping budget cuts to safety-net health care programs ― including Medi-Cal, California’s Medicaid program for low-income people ― just as enrollment is projected to spike because of record job losses related to the pandemic.

Health care experts also fear the cuts could jeopardize billions of dollars in emergency federal health funding allotted to California.

“I understand there’s a pandemic and it’s really bad and everybody is hurting,” said Carrie Madden of Chatsworth, California. Carrie and her sister have muscular dystrophy and their mother is a heart attack survivor who struggles with dementia.

Madden’s fears are compounded by the COVID-19 crisis, which has hit older people and those with chronic health conditions the hardest. She doesn’t want her mother, her sister or herself to end up in a nursing home or other long-term care facility — the settings with the most outbreaks of COVID-19.
“This is the wrong approach,” she said. “This will make disabled people end up in nursing homes.”

States across the country are eyeing Medicaid cuts to balance their budgets, in part because health care is usually the biggest portion of state spending, after education. They also project that more people will sign up for the public health care program, as the number of unemployed Americans hits astronomical heights. More than 20 million Americans filed for unemployment in April, raising the unemployment rate at least to 14.7%, the worst since the Great Depression of the 1930s.

New York approved Medicaid cuts that will take effect after the federal emergency ends, while Georgia has instructed all its agencies to reduce spending by 14%.

To address an estimated $54 billion deficit in the 2020-21 state budget, Newsom proposes a $205 million cut — or a 7% reduction in caregiver hours — to the In-Home Supportive Services program the Maddens rely on. The program, primarily funded by Medi-Cal, pays caregivers to make meals for people who need help to live independently, do their laundry, bathe them, administer medical treatments and keep their home clean.

The list of his other proposed cuts is lengthy: He would scale back or eliminate other programs intended to keep low-income seniors and people with disabilities in their own homes, such as adult day health care and support from social workers.

And he is calling on lawmakers to remove $54.7 million in “optional” Medi-Cal benefits, such as adult podiatry care, eyeglasses, speech therapy and hearing exams — benefits that lawmakers recently restored after they were cut during the last recession.

“These don’t feel optional to people if they have had a stroke or need teeth to eat their food,” said Tricia Berke Vinson, an attorney with the Legal Aid Society of San Mateo County.


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We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

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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]
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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