August 28, 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, COVID-19, & You:
COVID-19 May Shut Many Disability Programs For Good
By Michelle Diament, Disability Scoop, August 24, 2020
Disability service providers across the country are closing programs as the coronavirus pandemic wears on and many are unlikely to reopen.
In a survey of 191 organizations serving people with intellectual and developmental disabilities nationally, 77 percent said they shut down or discontinued programs as a result of challenges related to COVID-19 and 16 percent of those indicated that the programs are not expected to reopen.

The data was collected in July by the American Network of Community Options and Resources, or ANCOR, a national trade group representing disability service providers. The survey is a follow-up to one conducted in April as the pandemic initially took root.

“I think at the beginning of the crisis there was a feeling that these programs would come back online, but what we’ve seen is that they are not reopening,” said Donna Martin, director for state partnerships and special projects at ANCOR.
Most of the closures are day programs and employment services. Because of social distancing requirements, Martin said that some
programs are not able to serve enough people right now to be financially feasible. And, programs that have attempted to reopen have seen low utilization.

In some cases, the shuttered programs represent the closure of an entire agency, Martin indicated.
Providers are continuing to contend with increased costs related to personal protective equipment, COVID-19 testing, cleaning supplies, training and excess overtime while also hemorrhaging revenue from services being shut down and decreased participation.

Many organizations have gotten some financial support through a mix of state and federal assistance, meaning that losses in July were less substantial than what was reported in the April survey. But, much of that aid is set to expire.

State Actions to Sustain Medicaid Long-Term Services and Supports During COVID-19
By MaryBeth Musumeci, Rachel Dolan, and Madeline Guth. Kaiser Family Foundation, August 26, 2020

States have taken a number of Medicaid policy actions to address the impact of COVID-19 on seniors and people with disabilities, many of whom rely on long-term services and supports (LTSS) to meet daily needs and are at increased risk of adverse health outcomes if infected with coronavirus. Medicaid is the primary source of coverage for LTSS, financing over half of these services in 2018. Collectively these actions could expand access to coverage (by enhancing financial and functional eligibility criteria and streamlining enrollment), expand access to long-term care services (by adding new benefits and increasing utilization limits), and bolster providers (through increased reimbursement or retainer payments). Increased funding may be required to extend community-based care more broadly and additional enrollee protections and oversight could be achieved through strengthened reporting requirements. This issue brief identifies state actions taken as of August 21, 2020 and implications for future consideration.

Opinion: People with Intellectual Disabilities Need to be Prioritized for COVID-19 Vaccine
By Tine Hansen-Turton and Liz Hayden, Philadelphia Inquirer, August 25, 2020
As pharmaceutical manufacturers race to develop a COVID-19 vaccine, local, state, and federal policymakers will need to make critical decisions regarding who has priority access. Some states have protocols that rank individuals with a disability or medical condition at a lower level of priority to receive medical treatment, including vaccines, during public health emergencies. Some, but not all, of these priority protocols have been addressed by the U.S. Department of Health and Human Services’ Office of Civil Rights as the result of lawsuits. The U.S. Centers for Disease Control and Prevention utilizes tiers to determine priority access to vaccines during a pandemic, which are dependent on numerous factors, including the severity of a pandemic and the availability of the vaccines; however, these tiers do not specifically include people with disabilities.

The COVID-19 pandemic revealed two serious gaps in the systems of care for people with intellectual and developmental disabilities. First, organizations providing critical services to this vulnerable population are not defined in federal legislation in the way that organizations such as skilled nursing facilities are, and consequently they were left out of funding streams that became available through the CARES Act and other opportunities. Second, the population served by these providers is not well-defined or well understood by government agencies and legislators.

Part of the problem is that no nationally recognized definition of intellectual disability exists. Federal sources of health data, including the U.S. Census, used to drive public health decisions do not specifically break out data or definitions for people with intellectual disabilities.

Many People of Color, Immigrants Among Over 1,000 US Health Workers Lost to COVID
By Danielle Renwick, and Shoshana Dubnow, the Guardian and Kaiser Health News, August 26, 2020
More than 1,000 front-line health care workers reportedly have died of COVID-19, according to Lost on the Frontline, an ongoing investigation by The Guardian and KHN to track and memorialize every U.S. health care worker who dies from the coronavirus. Earlier this month, the organizations published a major interactive database. It is the most comprehensive accounting of U.S. health care workers’ deaths in the country.

The virus has taken a disproportionate toll on communities of color and immigrants — and health workers haven’t been spared.

Guardian and KHN reporters have published profiles of 177 of the 1,079 victims we have identified based on obituaries, news reports, social media posts and other sources. Of those 177, 62.1% were identified as Black, Latino, Asian/Pacific Islander or Native American, and 30.5% were born outside the United States. Both figures support findings that people of color and
immigrants (regardless of race) are dying at higher rates than their white and U.S.-born counterparts.

These figures track with other research. According to a Harvard Medical School study published in The Lancet Public Health last month, health care workers of color were more likely to care for patients with suspected or confirmed COVID-19 and nearly twice as likely as their white counterparts to test positive for the coronavirus.

The U.S. health system also relies heavily on immigrant health workers, who account for almost 1 in 5 health workers. Immigrant health workers tend to work in the most vulnerable communities: A 2018 study found that high-poverty areas tend to have more foreign-trained doctors than do wealthier regions, for example.

National News:
Dozens of Disability Leaders Decry Cancel Culture at the New York Times
National Council on Severe Autism, via Medium, August 20, 2020
The following letter was sent to The New York Times on behalf of 75 organizations and leaders in the disability community in response to the paper’s editorial choices omitting serious issues facing those with significant intellectual and developmental disabilities.

Dear Editors:

July 26th marked the 30th anniversary of the signing of the Americans with Disabilities Act (ADA). To honor this unquestionably historic legislation, The New York Times has published over two dozen articles over the past few weeks celebrating disability. But with the exception of a brief mention in an article on caregiving, those with significant intellectual and developmental disabilities were notably absent from the Times’ coverage.

People with disabilities who win Academy and Tony awards, lobby Congress, and shape a new variant of hip-hop music absolutely deserve to be honored, as the Times did in its supplement dedicated to the ADA. But that isn’t the whole story. The whole story would include those whose profound intellectual and developmental disabilities preclude the autonomous decision-making, independent living, and competitive, minimum-wage employment that are the cornerstones of the Disability Rights movement. And it would also acknowledge that, in their zest to eliminate the specialized supports that don’t comport with this vision, advocates are doing exactly what Justice Anthony Kennedy feared would happen, when he wrote in his concurring opinion to the Olmstead decision referenced by the Times as a landmark in disability history: “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive…to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”
Our community’s absence from your coverage was not for lack of trying. Several prominent voices submitted responses — either to individual pieces or to the Times’ request for contributions from the public. Not one of these was published. Some excerpts:

From Amy Lutz, founding board member of the National Council on Severe Autism and parent of a severely autistic son: “[Jonah] 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… Jonah’s experience is just as important…and must not be elided from the narrative in favor of some kind of fantasy autism nirvana.”

From Lee Elizabeth Wachtel, MD, Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute and an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine: “When an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm, or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied.”


Striking Delays in Autism Dx Among African-American Kids
By Elizabeth Hlavinka, MedPage Today, August 24, 2020
African-American families with concerns about their children's development have to surmount many obstacles before reaching an autism spectrum disorder (ASD) diagnosis with providers, a study indicated.

Among 584 Black children with ASD, the mean age of diagnosis was 5.4 years, more than 3 years after parents first reported concerns about children's development, reported John Constantino, MD, of Washington University in St. Louis, and colleagues.

More than four in 10 parents (41.6%) said they went to multiple providers before their child was diagnosed, and 14% said they saw at least six doctors before reaching an ASD diagnosis, the group wrote in Pediatrics.
Delays due to a lack of available professionals or significant wait times were reported in 31.3% and 35.6% of the cases, respectively.

"When families were asked about intervention services, those were generally delayed way beyond the time when developmental therapies are recommended and have the highest level of impact on the outcomes of children," Constantino told MedPage Today. "Developmental therapies are capable of preventing severe cognitive impairment in some children with autism and impact their adaptive functioning outcomes."

State News:
Kentucky - Testimony Outlines Pandemic Concerns in Long Term Care Facilities
Ohio County Monitor, August 28, 2020
Emotions ran high during testimony on the COVID-19 death rate in long term care facilities during Wednesday’s Interim Joint Committee on Health, Welfare and Family Services meeting.

Betsy Johnson, president and executive director of the Kentucky Association of Health Care Facilities and Kentucky Center for Assisted Living, shared data showing that more than half of Kentucky’s COVID-19 related deaths have occurred in LTC facility residents.

“COVID deaths in long term care settings have nothing to do with the quality of the facility,” Johnson said. “Some of the hardest hit facilities here in Kentucky are our best facilities. Facilities I have recommended to my parents. Finally, we still need help. We need a lot of help, mainly funding to retain our workforce, which has been decimated.”

More funding is also needed for personal protective equipment and additional COVID-19 testing, Johnson added.
According to her presentation, the top three reasons why staff have quit are: fear of contracting COVID-19, childcare needs and fear of exposing high-risk individuals at home.

At the beginning of the pandemic, KAHCF and KCAL sent a request to Gov. Andy Beshear for a Medicaid rate add-on of $55 per Medicaid resident per day, according to Johnson. In April, the organizations learned their request was denied but facilities would receive an additional $270 for COVID-19 positive beds only.

Johnson said the additional funding decisions made by the state have not been adequate enough to address the issues LTC facilities are facing.

Connecticut - New Program Could Help Parents Keep Custody of Mentally Ill Kids
By Nina Zweig and Juliana Schatz-Preston, Tuype Investigations, August 25, 2020
From 2011 to 2018, more than 1,000 parents in Connecticut relinquished custody of their children to obtain intensive mental health care through the state’s Department of Children and Families (DCF). DCF, which handles mental health services as well as child abuse and neglect cases, has long been criticized for pressuring parents into trading “custody for care:” giving up custodial rights so their child is eligible for government-funded treatment reserved for kids in foster care.

Now DCF has introduced a program that has the potential to eliminate this choice. The Voluntary Care Management program (VCM) will offer a way for parents to access mental health services funded by the state without having to enroll in a DCF program that could result in their children being placed in foster homes.

The practice of parents relinquishing custody for mental health care came under increased scrutiny after a joint investigation by Type Investigations and Reveal in March 2019. The report found that custody-for-care cases occur in 44 states, including 26 with statutes or policies to prevent the practice. In Connecticut, the state labels certain child neglect cases as “uncared for due to
specialized needs,” which lawyers say typically means that parents are giving up custody because they lack the resources to care for their children.

Parents of children with severe mental illnesses or developmental disorders can find themselves in an untenable situation as they try to meet their child’s needs. In-home care services are often inadequate for children who pose a danger to themselves or those around them. For some of these children, such as those with acute autism or schizophrenia, extended-stay respite care or residential treatment programs are recommended to provide the necessary level of care and improve symptoms. But health insurance rarely covers residential treatment, which can cost over $100,000 a year, sometimes several times that.
Families who can’t afford to foot that bill often find that taking their child to the emergency room in moments of crisis is their only recourse. Some desperate parents turn to DCF for help.

Minnesota DHS to Cut Spending, Impose Layoffs to Close Looming Budget Shortfall
The state's largest agency is shifting away from operating group homes. 
By Chris Serres, Star Tribune, August 28, 2020
Facing a major budget shortfall, the Minnesota Department of Human Services (DHS) is preparing to lay off staff and slash millions of dollars in spending on state-run programs that serve vulnerable populations as well as sex offenders.

The budget cuts, disclosed in a memo to state employees Wednesday, include shifting the operation of some group homes for people with disabilities to private operators and the termination of a satellite program for treating sex offenders at the state prison in Moose Lake.

The agency also plans to leave dozens of positions unfilled at the state’s main psychiatric hospital in St. Peter and lay off 15 employees at the Minnesota Sex Offender Program, which houses about 740 sex offenders at state-operated treatment centers.

The cost-saving measures are part of a broader effort by Minnesota’s largest state agency to close
a budget gap resulting from growing employee costs, while preserving the social safety net for impoverished families and others hard hit by COVID-19. So far, the pandemic has eviscerated state and local budgets in Minnesota and nationally as costs for responding to the virus skyrocket while revenue plunges. The administration of Gov. Tim Walz has projected a staggering $4.7 billion shortfall for 2022 and 2023 because of the pandemic.

The cuts at the DHS are focused on a large division within the agency known as Direct Care and Treatment, which is projected to spend $533 million in the current fiscal year and provides care to about 12,000 people with mental illnesses, developmental disabilities and substance-use disorders, as well as for hundreds of sex offenders who are civilly committed for treatment.

Oregon - Mid-Columbia Center For Living Seeks to End Services to Residents with Developmental Disabilities
By Dennis Ziemer, Hood River News, August 26, 2020

For the last 30 years, Wasco, Hood River, and Sherman countries have collectively organized a County Developmental Disabilities Program funded by the Oregon Department of Human Services, which has been run by the Mid-Columbia Center for Living (MCCFL).

County Developmental Disabilities Programs provide eligible adults and children with intellectual and developmental disabilities with services like case management of an individual support plan, resource referrals, 24-hour care, assisted living services and employment support.

Now, in the midst of a global pandemic when the residents of these counties need these services more than ever, MCCFL has claimed that it can no longer run this program and will be laying off 11 employees, 10 of whom are considered essential.

In canceling the program, MCCFL has not identified anyone to take over the program, leaving their clients without the vital services they need.

“As front-line workers serving some of our communities’ most vulnerable individuals, this decision in the midst of a global pandemic, fire season, and the transition for students to begin remote learning, is more than disconcerting” said Sarah Smutz, a service coordinator at MCCFL.

Massachusetts - Baker Administration Finally Requiring DDS Providers to Test All Staff for COVID-19
By Dave Kassel, COFAR Blog, August 27, 2020

In the wake of months of criticism for failing to make testing of staff in group homes mandatory, the Baker administration has issued a directive that requires “baseline testing” and potentially biweekly retesting of all staff in the Department of Developmental Services (DDS) system for COVID-19.

The baseline testing must be done by September 15. It’s not clear whether biweekly retesting, or “surveillance testing,” of staff throughout the system will actually go into effect. Under the directive, none of the state’s five Emergency Medical Services (EMS) regions currently meets a threshold of positive cases among residents that would trigger the ongoing surveillance testing requirement.

The directive from the Executive Office of Health and Human Services (EOHHS) defines staff as including all direct-care personnel and physicians, nurses, therapists, technicians, and all others who can potentially transmit the virus to residents.

Massachusetts - After long fight by Advocates for Nicky’s Law, Key State Lawmakers Seek Postponement of its Effective Date
By Dave Kassel, COFAR Blog, August 21, 2020

The chairs of a key state legislative committee are seeking a nearly year-long delay in establishing a long-sought registry of staff found to have abused persons with developmental disabilities in Massachusetts.

The delay would postpone the effective date of Nicky’s Law from January to November of next year, leading to objections from COFAR and other advocacy organizations that have fought for implementation of the legislation.

New York's Most Vulnerable will Suffer if the State Cancels Funding
By Dennis Slattery, NY Daily News, August 24, 2020
Service providers supporting some of the most vulnerable New Yorkers are warning of layoffs and deep cuts if the state doesn’t take action.New York Disability Advocates, a statewide coalition of providers, is calling on New York to allow providers to use resources that have already been budgeted to meet fixed costs, prevent layoffs and avoid a disruption in services for people with developmental and intellectual disabilities.

“The system that serves people with I/DD is in jeopardy,” said the group’s president Tom McAlvanah. “We understand the state is under increasing financial stress. However, we are not asking for increased funding.”

Providers say they’ve been especially hard hit by the coronavirus pandemic, with workers putting their lives on the line to care for people with disabilities. New federal rules have also jeopardized the safety of direct support professionals, according to the group.

On July 21, The Centers for Medicare and Medicaid Services, a federal program, announced it would limit “retainer day payments” to service providers — effectively forcing provider agencies to either reopen in-person congregate programs in the midst of the COVID-19 crisis or lay off employees.


McAlvanah said the providers understand the financial crush the state is currently facing, but pleaded for the release of funds that have been so far withheld.

“Certain providers will survive this financial crunch, while others will lose their entire staff and be forced to close their doors,” McAlvanah said. “Many people we support and families will be left with no services. The state must intervene to counteract the impact of the actions of the federal government.”

Not-for-profit provider organizations deliver more than 85% percent of essential services for New Yorkers with developmental disabilities, including intellectual disabilities, cerebral palsy, Down syndrome, and autism spectrum disorders. They receive more than 90% of their funding from Medicaid, which is disbursed by the state.



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.

OF CONCERN:

VOR is concerned about the following bills because they only cover HCBS proivders, and because the sponsors of the bills have consistently fought against ICFs as part of the continuum of care in I/DD services.

H,R. 6305 & S. 3544 - Coronavirus Relief for Seniors and People with Disabilities Act of 2020 - Bill provides FY2020 supplemental appropriations to the Centers for Medicare & Medicaid Services for specified quality improvement and laboratory certification activities. The funds are designated as an emergency requirement, which exempts the funds from discretionary spending limits and other budget enforcement rules.
In addition, the bill (1) temporarily requires state Medicaid programs to provide Medicare cost-sharing assistance to certain individuals who qualify for, or are enrolled in, the low-income subsidy program under the Medicare prescription drug benefit; and (2) authorizes a grant program to support Medicaid home- and community-based services during the public health emergency.

VOR SUPPORTS:

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.)

TELEHEALTH:

During the COVID-19 Pandemic, Health Care Providers have been relying increasingly on Telehealth Services. Members of Congress have proposed a number of bills to learn more about telehealth services, with a possible eye toward expanding these services into our broader system of health care.

VOR has been following the expansion of telehealth, especially how incorporating these services into treatment of people with I/DD might change our delivery systems. Telehealth has the potential to improve care for some people with poor access to professional care, or it could be used as a less-expensive substitute for in-person treatment and quality professional care.

Current Telehealth bills in the 116th Congress include:

H.R. 6474 - Healthcare Broadband Expansion During COVID-19 Act - To provide for the expansion of the Rural Health Care Program of the Federal Communications Commission in response to COVID–19, and for other purposes.

H.R. 7078 - To study the effects of changes to telehealth under the Medicare and Medicaid programs during the COVID-19 emergency.

S. 3999 - A bill to amend title XVIII of the Social Security Act to simplify payments for telehealth services furnished by Federally qualified health centers or rural health clinics under the Medicare program, and for other purposes.

S. 3999 - A bill to amend title XVIII of the Social Security Act to ensure access to mental health and behavioral health services furnished through telehealth under the Medicare program.
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