A report put out by Disability Rights Nebraska revealed blind spots in how Nebraska has taken care of people with disabilities since the start of the COVID-19 pandemic. “This report documents our investigation for the last nine months, particularly focusing on congregate living facilities,” said Legal Services Director of Disability Rights Nebraska Tania Diaz.
Disability Rights Nebraska, is, as is stated on their website, "A protection and Advocacy system for people with disabilities in our state." This includes intellectual, developmental, and physical disabilities and people with mental illness. Founded in 1970, as a subset of the Citizen Advocacy Program, Disability Rights Nebraska is mostly federally funded - with only a few hundred thousand coming from the state of Nebraska. They normally monitor institutional facilities to ensure people with disabilities work in equitable conditions, but with the outbreak of the COVID-19 pandemic, they, like many of us, had to make changes.
Working remotely, DBN surveyed facilities and conducted interviews with employees all over the state for most of the year, alleging, in this report, basic food insecurity for people with disabilities, inability to obtain PPE, critical staffing shortages in institutions caring for people with disabilities, no information or guidance from state officials, who particularly made no plan for communicating guidance to facilities serving adults with mental illness, failure to provide comprehensive testing early in the pandemic for people with disabilities and abandonment of all in-facility baseline testing as of October, and ongoing inaccessibility of TestNebraska program for people with disabilities: the phone screening option has been suspended and there remains no option for people who can’t drive themselves to the test. Mary Angus, a person with a disability living in Omaha, said “I have so many friends with disabilities who wouldn’t be able to get to a vaccine distribution site. The same problems that have made Test Nebraska inaccessible to people who use mass transit will confront the disability community for vaccines.”
"We need more planning at all levels of government, one thing we know for sure, people with disabilities are going to need the most help," said Amy Miller, a Staff Attorney for Disability Rights Nebraska.
For these interviews, DRN spoke to almost 100 different congregate facilities (this included county jails, day programs, homeless shelters, group homes for people with developmental disabilities, and assisted living facilities) - asking questions such as the impact of COVID-19 on staff levels, how staff are screened and tested for the virus, the impact of social distancing on the day to day of the residents of these places, unmet needs, and the adequacy of PPE (Personal Protective Equipment) available in these facilities. DRN says most facilities were transparent and eager to share information.
The report says people with disabilities have a higher risk of COVID due to already present underlying health conditions, their research indicates, for example, that people with Down's Syndrome are at almost 5 times at risk for being hospitalized due to COVID-19 and almost 10 times at risk of dying from COVID, and they cite a report from the Omaha World-Herald showing that almost half of Nebraska's COVID deaths specifically have come from elderly people in nursing homes. "These people are high risk - these areas are potential hot spots, so we need comprehensive testing in these areas," said Amy Miller. "These are issues that other states don't have."
The report adds that the needs of people with disabilities have changed substantially since the beginning of the pandemic - saying that early on, facilities were plagued by strained staffing, inability to access food, and PPE shortages. "Most places we spoke to had to lean on private testing, the state did not get involved," said Miller. "They would test people when they showed symptoms, but this was too little too late because of the incubation period."
The report adds that the Division of Developmental Disabilities had been doing a good job communicating with agencies that serve disabled Nebraskans, but that the state had taken several months to bring Assisted Living Facilities into the loop. DRN alleges that most of the Assisted Living Facilities only learned about the existence of a state-developed PPE portal for the first time when DRN interviewed them. "The Governor has had months to plan for this - and has taken no steps. We want to know the state's plan," said Miller.
The report says that the need for food and PPE's stabilized over the summer and into the fall. DRN highlights later issues such as complications with visitation and lack of access to transportation for people with disabilities. "Too much bureaucracy makes these private companies inaccessible for someone living in places such as a dementia ward or if you're an adult with down's syndrome or if you're blind - and they required you to come to them - meaning that people who couldn't drive there couldn't get there and would risk exposing other people," said Miller. "People in a group home or on social security could not afford to go to their local physician, they don't have the money."
Jeff Powell, Public Information Officer and Developmental Disabilities Lead for the Nebraska Department of Health and Human Services said that DHHS remains focused on helping people live better lives and continues to work collaboratively with Disability Rights Nebraska's leadership to improve services during this unprecedented pandemic. He added that the DHHS appreciates the advocacy role that DRN plays in the state.
Powell then countered DRN - saying that testing has been available for people with intellectual and developmental disabilities through the Division of Developmental Disabilities, that communications with stakeholders have been ongoing since the pandemic began, adding that Tony Green, the current Director of the Development Disabilities Division has been personally organizing conference calls at least once a week (Green took office in August). Powell added that Green has repeatedly reminded stakeholders to call the central office if there are any issues with access to testing for people with disabilities - reporting that no requests have been received as of early December.
Powell added that DHHS has been working with local public health departments to refer clients to Total Wellness for in-home saliva tests, utilize contracts with home health agencies, and provide referrals to testing sites closer to where a disabled person might live. He said that DHHS has worked with all long-term care facilities to provide testing - that they receive test kits from the state on a regular basis, and are required to test at regular intervals. DHHS' released a plan that talks about their prioritization of vulnerable populations in the state's vaccination plan - which is available here.
Kathy Hoell, Executive Director of the Nebraska Statewide Independent Living Council and a person with a disability living in Papillion added, “I am extremely frustrated by the State’s lack of response to people living in congregate settings and people with disabilities living in the community. I’m still getting calls from people with disabilities trying to find ways they can access testing if they don’t have transportation. Home tests average $120 - $150, which is prohibitive for a lot of people whose income is restricted.”
The report added that has refused to provide in-house testing for people with disabilities and people living in nursing homes. DRN says that this is a hindrance in restarting visitation because reopening visitation is contingent on facilities being COVID free for a certain period of time.
DRN's report added that adds that adults with mental illnesses are the clearest example of Nebraskans with disabilities that have been abandoned by the state since the start of the pandemic. The report criticizes what they allege is a lack of response from the Divison of Behavioral Health - where they did not brief Assisted Living Facilities on relevant information, and they assert also that these places were not given adequate access to PPE's or testing.
Meg Busing, a person with a disability living in Omaha, said “It has been very disheartening to see how our most vulnerable populations are not being respected or empathized with. We need transparency and we need caring leaders who can assist in testing and treatment and not make things even more stressful for people with disabilities in our community.”
The report praises some of the changes the state has made since the start of the pandemic - such as emphasizing people with disabilities as "critical populations" to receive a COVID-19 vaccine, creation of an online portal to request PPE, a non-discriminatory possibility that allows for people with disabilities to be prioritized if, in theory, the state needs to ration ventilators and medication, expansion of testing and a better means of delivering information.
As of November - Governor Ricketts has granted extra funding to long-term care facilities.
The report concludes that the changes that need to made include data transparency for testing in long term care facilities, DRN says Nebraska reports COVID-19 cases in lump sums by county. DRN highlights the way Colorado and Iowa test for COVID in Long Term Care Facilities as positive examples. "Many states are providing thorough data that allows the public to know when COVID-19 outbreaks have occurred," said DRN. The report also calls for increased and comprehensive COVID testing, as well as improved accessibility to TestNebraska.
(Photo by WOWT 6 News)