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

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.

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

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.”

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.

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.

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

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.