Contact your elected officials and tell them about our loved ones with I/DD.

Just click here for their Action Center

By Andrew Donlan, Home Health Care News, March 8, 2021

The $1.9 trillion stimulus package took a critical step on Saturday. It passed in the Senate, which then sent it back to the House of Representatives for final deliberation before ultimately landing on President Joe Biden’s desk.

From a home-based care perspective, one of the most noteworthy elements of the Senate passage was that the home- and community-based services (HCBS) Federal Medicaid Assistance Percentage (FMAP) payment boost was even higher than expected. Instead of a 7.35% hike to HCBS funding, the stimulus bill now includes a 10% increase.

The 10% FMAP increase means an additional $12.67 billion in funding for HCBS from April 1 of 2021 to March 31 of next year.

Thomas Jefferson University via American Association for the Advancement of Science, March 5, 2021

Intellectual disability puts individuals at higher risk of dying earlier in life than the general population, for a variety of medical and institutional reasons. A new study from Jefferson Health examined how the COVID-19 pandemic has affected this group, which makes up 1-3% of the US population. The study, published today in the New England Journal of Medicine (NEJM) Catalyst, found that intellectual disability was second only to older age as a risk factor for dying from COVID-19. "The chances of dying from COVID-19 are higher for those with intellectual disability than they are for people with congestive heart failure, kidney disease or lung disease," says lead author Jonathan Gleason, MD, the James D. and Mary Jo Danella Chief Quality Officer for Jefferson Health. "That is a profound realization that we have not, as a healthcare community, fully appreciated until now."

The authors examined 64 million patient records from 547 healthcare organizations between January 2019 to November 2020 to understand the impact of the COVID-19 pandemic on patients with intellectual disabilities. They identified variables such as COVID-19, intellectual disability or other health conditions, as well as demographic factors such as age.

The results showed that those with intellectual disabilities were 2.5 times more likely to contract COVID-19, were about 2.7 times more likely to be admitted to the hospital and 5.9 times more likely to die from the infection than the general population.

"Our failure to protect these deeply vulnerable individuals is heart-breaking," says co-author Wendy Ross, MD, a developmental and behavioral pediatrician and director for the Center for Autism and Neurodiversity at Jefferson Health. "I believe that if we can design a system that is safe and accessible for people with intellectual disabilities, it will benefit all of us."

GAO-21-49 Published: Nov 16, 2020. Publicly Released: Dec 16, 2020.

Medicaid spends about a third of its budget on long-term services and supports for adults and children with disabilities and chronic conditions. Over half of states contract with managed care organizations to provide those services.

We examined 6 states, each of which reported finding significant problems with the quality of care provided through these contracts. In some cases, the problems led to patient injury or neglect. This suggests that problems may be widespread, raising concerns given gaps we found in monitoring and oversight.

At the state and federal levels, GAO found weaknesses in the oversight of Medicaid managed long-term services and supports (MLTSS), which assist individuals with basic needs like bathing or eating.

Through various monitoring approaches, six selected states identified significant problems in their MLTSS programs with managed care organization (MCO) performance of care management, which includes assessing beneficiary needs, authorizing services, and monitoring service provision to ensure quality and access to care. State efforts may not be identifying all care management problems due to limitations in the information they use to monitor MCOs, allowing some performance problems to continue over multiple years.

GAO found that the Centers for Medicare & Medicaid Services' (CMS) oversight of state implementation of its 2016 requirements, and of access and quality in MLTSS more broadly, was limited. This hinders the agency's ability to hold states and MCOs accountable for quality and access problems beneficiaries may face.

By Anita Wadhwani, Tennessee Lookout, March 6, 2021

There was a "terrible spell" beginning last October, when 22 individuals with disabilities fell ill in group homes or other programs operated by Development Services of Dickson County.

Katie Powers, associate executive director of the nonprofit organization, said she watched helplessly as one in every five individuals aided by her agency got sick with COVID-19, along with 55 staff members. Despite strict precautions including mask-wearing, handwashing and limited outside interactions, the virus still crept into group homes where staff provide 24-7 care and private residences where, typically, aging parents require a few hours a day of support for adult children with disabilities.

Then came a flicker of good news: The day before Christmas Eve, Powers got word that state officials would head to their Dickson offices the next day, providing vaccines to anyone able to make it in. It marked a hopeful turning point for a virus that has hit people with disabilities at disproportionately high rates. Since then, 70 individuals with disabilities and 75 staff have been vaccinated at the agency.

"It's going to open the world back up for us," Powers said. "They've been in their home for months. They're looking at going back to church, to work, seeing friends and family. It's a huge relief after an awful time."

Tennessee was the first state to prioritize vaccinations among people with intellectual and developmental disabilities in the very first phase of vaccine distributions. On December 21, five days after hospitals began giving out the first vaccines to health care workers, the Department of Intellectual and Developmental Disabilities, or DIDD, held its first mass vaccination event for people enrolled in state programs.

By News Tribune Staff, Duluth News Tribune, March 8, 2021

Eligible paid caregivers include personal care assistants and direct support professionals. This includes those working on waivers and in-home and community-based services. Eligible unpaid caregivers work in similar capacities as personal care assistants, direct support professionals and nurses for persons with complex medical needs and tactile interpreters for people who are deaf-blind.

Eligible caregivers can schedule a vaccine through their primary medical facility or pharmacy. Individuals who do not have a medical provider can register for a vaccination appointment through St. Louis County Public Health either at stlouiscountymn.gov/vaccineregistration or by calling the county's COVID vaccine scheduling line at 218-726-2623. Calls are answered weekdays from 8:30 a.m. to 4 p.m.

By Eli Kirshbaum , State of Reform, March 9, 2021

Patients in residential facilities have undergone increased isolation this past year, as COVID-19 safety concerns spurred the termination of visitation rights last March. According to Rep. James Frank, this isolation is detrimental to the mental and physical health of these individuals, who often rely on visitors for care and companionship. He is sponsoring both HB 892 and HJR 46 to avoid this issue in the future.

Frank, Chair of the House Human Services Committee, said he has had more constituents approach him about this issue than about any other. According to him, many patients in these facilities have died within the past year, a time during which time they were allowed zero or minimal visitors.

Although visitation restrictions have relaxed since last March, Texas currently only allows visitation in facilities that have had 14 days without exposure to COVID-19. Under HB 892, patients in state-supported living centers and nursing home assisted living facilities would be able to designate at least one essential caregiver and grant them visitation rights. 

These rights would be absolute, barring facilities from preventing them from visiting — something that occurs frequently, according to Mary Nichols, leader of the advocacy group Texas Caregivers for Compromise.

The bill stipulates that facilities can remove caregivers if they refuse to comply with facility guidelines. Residents can appoint a replacement caregiver if this is the case. In addition, training requirements for essential caregivers can’t be more strenuous than those for hospital staff, and the caregiver will be under no obligations to perform specific tasks.

By Tribune-Herald staff, Hawaii Tribune-Herald, March 11, 2021

Independent pharmacies on Oahu and Hawaii Island have administered first doses of the Moderna COVID-19 vaccine to about 10,000 residents and caregivers in approximately 1,700 small care homes and have now begun returning to administer second doses.

As of mid-February, 1,537 small care homes on Oahu and 152 small care homes on Hawaii Island, or about 90% of the total number of such facilities on those islands, have received vaccination visits, according to the state Department of Health.

Five major categories of homes were visited: adult residential care homes, most of which house five or fewer residents; community care foster family homes; developmental disabilities domiciliary homes; intermediate care facilities; and adult foster homes for people with intellectual and developmental disabilities.

Citing constituents’ concerns, members of the legislature’s Bipartisan Commission on Intellectual Disabilities and the Impact of COVID-19 have urged Gov. Ned Lamont to provide COVID-19 vaccinations to those with intellectual and developmental disabilities.

Sens. Cathy Osten, D-Sprague, and Paul Formica, R-East Lyme, are among the six members of the commission, which was created under the Joint Rules of the Senate at the start of the legislative session.

“We believe that this vulnerable population should have been prioritized to receive the vaccine as soon as possible or as originally planned under Phase 1B due to elevated health concerns and not based on the new age-based plan that was announced recently,” the commission wrote in a March 3 letter to Lamont and Lt. Gov. Susan Bysiewicz.

Lamont announced Feb. 22 that those 55 and older, as well as teachers, school staff and child care providers, would become eligible March 1 and that subsequently, eligibility would be solely based on age.

“Our immunocompromised population and many in our I/DD community are at serious risk for developing adverse complications that will only exasperate their underlying medical conditions if they are not given priority," the commission members wrote. "Furthermore, our I/DD population has been impacted greatly during this pandemic and they have faced even greater social isolation and setbacks that range from issues from not being able visit with family or being able to learn or work in the developmental programs normally offered to them. Due to their condition, many in this population are also not able to wear masks and have not been vaccinated because they receive services at home or may not be in other group settings."

"We would also appreciate if you could give serious consideration to allotting a certain number of dedicated vaccines for this population based on need," the commission wrote.

By Michael Roppolo, CBS News, March 10, 2021

In the early days of the coronavirus pandemic, New York Governor Andrew Cuomo's administration issued a memo instructing hospitals and group homes to "expedite" the release of asymptomatic group home residents back to their communal living sites. The order may have had terrible consequences. State data obtained by CBS News shows the virus ravaged group homes in the state, infecting more than 20%, or one in five, of their residents.

More than 34,500 people with intellectual and developmental disabilities live in group homes in New York, and there have been 552 COVID-19 deaths reported as of March 7, with 6,934 residents testing positive since 2020, according to the data provided by the state's Office for People with Developmental Disabilities, the agency that oversees support services and group homes.

Over the past few weeks, Cuomo has been under fire over the state's misleading reporting of nursing home residents' COVID-19 deaths, which left thousands of cases out of the nursing home tally if the person died at a hospital instead. The governor now admits it was a "mistake." The controversy drew renewed attention to a highly criticized policy from the first wave of the pandemic — allowing the release of recovering coronavirus patients from hospitals into nursing homes even if they might still be contagious. The March 25, 2020 memo authorizing the nursing home policy was rescinded May 10.

What's gotten less attention is that the now-embattled administration also issued a similar directive on April 10, 2020 affecting group home residents. The state's Office for People With Developmental Disabilities (OPWDD) told the operators of residential facilities to be ready to "expedite the return of asymptomatic [group home] residents from the hospital." The directive noted that there must be clinical staff available to meet their medical needs and that "[s]tandard infection control precautions must be maintained."

"Consistent with public health recommendations, OPWDD issued guidance instructing providers to accept individuals only if they could safely accommodate them in the group home," Jennifer O'Sullivan, the office's director of communications, told CBS News in an email. "People who could not be safely accommodated either remained at the hospital or were served in one of the over 100 temporary sites established for COVID-19 recovery efforts."

The OPWDD's April 10 order still remains in effect, according to the agency. Cuomo's office did not respond to a request to comment on the policy. 

This chart is not all-inclusive and does not cover municipalities, some of which have issued their own guidance. Nor does the chart include vaccine provider registration procedures or industry-specific guidance. The purpose of the below information is to give employers a general idea of what vaccine-related actions various jurisdictions are taking.

VOR OPPOSES:

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 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.

This year, VOR's Annual Meeting will be held virtually, via Zoom. The date and details are yet to be announced. But to support our work, we are have a fundraising event we call the Campaign For Change.

Contact us at [email protected]

https://em-ui.constantcontact.com/em-ui/em/page/em-ui/email#