Dear Governor Herbert,

First, thank you and the many state agency and department leaders and staff for the massive efforts and coordination undertaken to provide leadership and mobilize state resources to confront the COVID-19 pandemic.

I write to urge you to use your leadership and vision to take steps to protect the welfare of all Utahns, but especially those with disabilities, during this crisis. The Disability Law Center (DLC) is Utah’s congressionally-mandated protection and advocacy (P&A) agency. The DLC also hosts the state’s HUD-designated fair housing initiatives program for Utah. Our mission is to enforce and strengthen laws that protect the opportunities, choices and legal rights of Utahns with disabilities. As you are aware, adults and children with disabilities are among those at the greatest risk in this crisis because so many are in institutions or incarcerated, homeless, seniors or medically compromised, or dependent on others for care.

Below are steps we believe necessary to protect Utahns with disabilities. Some are disability-specific, but others are universal measures. Although people with disabilities will be disproportionately affected by the loss of services and benefits during the pandemic, protecting everyone in this crisis is the best public policy. Utah must ensure that all our residents have access to a safe living situation, medical care, and other supports. Not only are these measures necessary to ensure Utahns with disabilities are served appropriately, they will help ensure Utah is meeting its obligations under federal laws that protect the rights of Americans with disabilities.

Planning Considerations

1. Act to ensure swift and comprehensive implementation of the Families First Coronavirus Response Act and provide clarification and implementation assistance to all state agencies.
2. Issue a directive to all medical care providers prohibiting discrimination against people with disabilities in offering COVID-19 treatment via rationing of care or treating the lives of people with disabilities, the elderly, or the poor as less valuable than others. Also, prohibit the unnecessary placement of people with disabilities in nursing facilities and other institutions. If such a temporary move is unavoidable, maintain a list of these individuals so the placement does not unintentionally become permanent. Additionally, the state should apply Centers for Medicare and Medicaid Services (CMS) nursing home COVID-19 standards to other facilities, as well as home and community-based settings, where those who are medically vulnerable are receiving care.
3. Many individuals (especially those with cognitive or intellectual disabilities) require assistance with communications and special consideration in pandemic preparedness planning. Provide accessible forms of communication to individuals – such as telephone or text messaging, accessible webpages (large, high-contrast fonts, minimal color, and file formats that can be read by screen readers), and language considerations – for real-time updates of the state’s emergency guidelines and response.
4. Direct local government bodies and your own department heads to include Utahns with disabilities and those who are aging, along with disability and aging experts, at all levels of planning.
5. Require administrators and service providers of congregate facilities, including hospitals correctional institutions, and residential facilities to have policies and protocols for maintaining staffing and continuity of services for individuals at their facilities or provide for alternative means of care and placement. Where particular services and activities have been suspended due to public health concerns, such as in-person visitation, require such administrators and service providers to ensure reasonable modifications to enable remote alternatives, such as no-cost video and telephone visitation.
6. Require insurers to cover telehealth visits for all kinds of medical care, including phone calls. In providing telehealth for patient and resident visits, ensure equity by providing access to the appropriate equipment and training in the use of telehealth by the patient or participant in all settings, including community residential settings.
7. Prioritize the direct support workforce and people with chronic conditions for access to COVID-19 testing, especially those who reside or receive services in an institution or institution-like environment.
8. Make preventative and protective measures, such as hand sanitizer, freely and widely available, in all congregate, institutional, and the institution-like settings.
9. Assure immigrants, whether documented or not, that they may access testing, care, and other public services without fear of immigration consequences.
10. Deploy the national guard and military personnel to expand testing and hospital capacity by turning empty college dorms and other unused facilities into makeshift hospitals, as may become necessary.

Criminal and Juvenile Justice

1. Call on local government to reduce county jail and juvenile detention populations by suspending the pre-trial or pre-disposition detention of people arrested for non-violent offenses, releasing early (at least on furlough) all those convicted of nonviolent offenses, and releasing outright all those scheduled for release within the next 60 days.
2. Call on the Department of Corrections (UDC) and local government to adopt improved screening and precautions in all state and county correctional facilities for COVID-19.
3. Direct the UDC and all county sheriffs to release or parole prisoners and detainees who are over age 60 or have disabilities and others at elevated risk from jail, prison, and juvenile facilities, including by informing them of the means to request parole.
4. Direct County Sheriffs and municipal law enforcement to bypass jail admission in all possible cases, particularly when responding to non-violent allegations.
5. Prohibit the use of solitary confinement as a means of social distancing.
6. Direct the Utah State Hospital to prioritize the mental health needs of its patients over calls for social distancing.
7. Urge private youth residential treatment facilities to return any residents at elevated risk to their homes or guardians wherever possible and to enact policies allowing for social distancing and routine cleaning/disinfection.
8. Urge the Chief Justice and the Administrative Office of the Courts (AOC) to make emergency modifications to state court procedures in order to extend timelines, permit easy continuances, immediately recognize the legitimacy of electronic signatures, expand the use of telephonic/ virtual appearances, and increase the public’s awareness and use of drop off boxes and self-scanned/emailed documents.

Medicaid

1. Dedicate more money to public awareness, outreach, and enrollment assistance.
2. Place more eligibility workers in community health centers, hospitals, and other locations.
3. Maximize use of presumptive eligibility, including hospital presumptive eligibility, through expansion of qualified entities, including the Department of Health (DOH), community health centers, and other community sites. Adopt presumptive eligibility for all eligible populations including children, pregnant women, and other adults. Develop a plan for follow-up to ensure eligibility of individuals beyond the presumptive eligibility period.
4. Minimize verification of income required from applicants by relying on self-attestation and electronic data sources to the maximum extent possible. Enroll people based on their self-attestation and follow up with verification requests only when the attestation is not compatible with electronic data sources. Assist applicants in providing any documents they need after exhausting attempts to verify citizenship or status through electronic verification.
5. Take advantage of overlapping eligibility for Supplemental Nutrition Assistance Program (SNAP) and Medicaid by using SNAP income data in determining and renewing Medicaid eligibility. Also implement express lane eligibility (ELE) for children, which allows states to rely on findings from other programs such as SNAP, school lunch and Temporary Assistance for Needy Families (TANF) in determining eligibility at application and renewal.
6. Suspend periodic eligibility checks during the year, including quarterly wage checks, or avoid acting on mid-year checks.
7. Temporarily delay renewals in affected areas under authority to exceed time limits in emergency situations.
8. Maintain coverage for people temporarily residing out of state due to the coronavirus.
9. Fully implement continuous eligibility for children through a state plan amendment (SPA) and adults through an 1115 waiver.
10. Increase eligibility for existing populations above current levels, at the state’s regular match rate, through a SPA.
11. Decrease or eliminate asset limits for Utahns with disabilities and those who are aging.
12. Cease seeking or implementing premiums, work requirements, etc. that make it harder for Utahns to enroll and stay enrolled.
13. Ensure all necessary treatment and preventive services, including vaccines, are covered for all adults without cost-sharing through a SPA. The option includes a 1% increase in the state’s match rate.
14. Reduce limits and allow 90-day supplies of maintenance medications, allow advance refills, and cover home delivery of prescription drugs.
15. Suspend or automatically extend prior authorization and utilization management controls.
16. Add COVID-19 specific services through selected CMS’ 1915 waiver template, a 1915(i) state plan option, or an 1115 waiver, e.g nutrition counseling, physical and mental health checks, and/or housing supports, etc).
17. Expand optional benefits and/or the amount, duration, and scope standard for mandatory and optional services.
18. Open managed-care networks.

Housing

1. Impose an emergency moratorium on the filing of new evictions, including a general order that all Utah state court judges issue an automatic “stay” of any in-process unlawful detainer actions. This should include the suspension of any normally accruing “treble damages” and attorney fees available under Utah’s unlawful detainer statute. Similarly, state-court supervised foreclosures or locally-administered terminations of housing subsidies should be suspended (including a statewide suspension on the issuance of writs of possession or execution).
2. Direct public utilities to halt all shut-offs and require them to restore services to all customers who currently lack water, electric, gas or other essential services.
3. Call on local government to halt all homeless encampment sweeps, set up hygiene stations at every encampment, and increase cleaning without seizing the possessions that people need to isolate in place.
4. Call on local government to end all ticketing, arrests and vehicle impoundments of people living in vehicles for vehicle habitation and related parking violations.

Food

1. Request permission from the federal government to suspend SNAP terminations and redeterminations, including all job search and work requirements.
2. Many Utahns with disabilities have difficulty cooking independently. Consequently, those who live alone may dine out frequently. While closing restaurants is an important public health measure, the state must ensure these individuals have means to access, prepare, and eat healthy meals.

Community Integration

1. Given the current shortage of providers for individuals with disabilities in Utah, dedicate sufficient resources to provide necessary supports for these individuals during the pandemic.
2. Support caregivers by allowing more respite/childcare under home and community-based support waivers for families experiencing staffing problems. Also, allow individuals to hire replacement providers without background checks, processing documents or verifying citizenship to eliminate any unnecessary delay. Additionally, suspend overtime limits so that available home care workers can fill unmet needs.
3. Allocate funding to community organizations such as Independent Living Centers and developmental disability service providers to establish or expand expedited recruitment processes for emergency back-up assistance.
4. Remove barriers, including those in purchase of service policies, that prevent the approval of respite, personal care services, and childcare – e.g. prohibitions on paying live-in family members or roommates as respite or personal care providers, etc.
5. Clarify operational protocols and offer mitigation/support for clients whose day provider is closed.
6. If an individual underutilizes services during the pandemic because of a temporary change in circumstance or need, it should not permanently reduce their budget.
7. Require the DOH, Adult Protective Services, and Department of Human Services, Office of Licensing to create an emergency plan, and establish standards for reporting concerns, especially beyond those identified in skilled nursing facilities, to at least the long-term care ombudsman and the P&A.
8. Direct DOH to apply to amend state plans, waivers, and contracts to ensure Utahns with disabilities can access necessary services immediately.

Public & Higher Education

1. Automatic extended school year (ESY) for all students with an Individualized Education Program (IEP). ESY needs to be specific to the needs of each student.
2. Continue IEP/504 services for students with a plan during school closure, regardless of flexibility given by federal government.
3. Plan for implementation of necessary compensatory services for students with an IEP who miss prolonged periods of instruction.
4. Develop accessible (e.g. captions, CART, screen readers, etc.) online learning resources to implement IEPs.
5. Ensure parents have access to most recent IEP and/or Behavior Intervention Plan to facilitate maximum communication and coordination with a student’s school team.
6. In addition to ensuring distance learning platforms are accessible, make sure all alerts from school districts and charter schools are available and understandable to parents and students.
7. Urge the Utah State Board of Education to facilitate a uniform response to parents throughout the state concerning IEPs.
8. Direct state - and urge private - universities, colleges, and technical schools to comply with their non-discrimination obligations under federal civil rights laws, including Section 504 of the Rehabilitation Act and Titles II and III of the ADA, including ensuring online learning is accessible and students with disabilities continue to receive appropriate accommodations.

Employment

1. Ensure unemployment benefit applications are accessible, e.g by phone, web, in other languages and alternative formats, etc.
2. Direct the Department of Workforce Services to extend Unemployment and Disability Insurance benefits for additional weeks and suspend job search requirements. Call on President Trump to declare a federal disaster and extend Disaster Unemployment Assistance to all those affected, as other states and members of Congress have done.
3. Suspend the Temporary Assistance to Needy Families work activity requirement and place a moratorium on the 5-year lifetime maximum for the duration of the COVID-19 pandemic.
4. Make sure employers are allowing/considering reasonable accommodations, including the option to work-from-home or take extended leave for employees with chronic health conditions.
5. Consistent with H1N1 guidance from the Equal Employment Opportunity Commission, employers should provide similar accommodations in at-home settings to those needed in the office. For example, a chair or other piece of equipment purchased for the employee to complete their job duties should be provided in the home.
6. Ensure layoffs/hour reductions do not target or disproportionately impact employees with disabilities.
7. Ensure results of any necessary health screening are kept private - and separate from an employee’s regular file.
8. Ensure local Social Security office phone line/online portals are accessible, as many Utahns with disabilities may have difficulty navigating these systems without in-person support.
9. Cease overpayment notice and collection for the duration of the pandemic.

Transportation

1. Buses and trains are the only means of transportation for many Utahns with disabilities. While social distancing is incredibly important, so too is the vital need to maintain public transit so those dependent on it can meet their needs and fulfill their obligations.

If you have questions or would like more information, please do not hesitate to contact me. Thank you for your time and consideration of the above recommendations. Sincerely, Adina Zahradnikova Executive Director

Today, the Disability Law Center called upon Governor Herbet to protect the welfare of all Utahns, particularly those with disabilities, during the COVID-19 crisis. If taken, we believe these measures will protect the health and safety as well as the legal rights of Utahns with disabilities and will ensure they receive appropriate care and services. The steps include:

• Planning Considerations
• • Swift and comprehensive implementation of Families First Coronavirus Response Act
  • Direct all medical care providers to prohibit discrimination against people with disabilities, including equity in telehealth
  • State emergency guidelines and response must be accessible and include people with disabilities in planning processes
  • Make sure Utahns with disabilities have access to needed services, like public transit and healthy food
• Criminal and Juvenile Justice
• • Suspend the pre-trial detention of people arrested for non-violent offenses
  • Improve screening and precautions in state and county correctional facilities
  • Release or parole prisoners and detainees who are over 60/have disabilities and others at elevated risk
  • Prohibit use of solitary confinement as means of social distancing
• Medicaid
• • Dedicate resources to public awareness, outreach, and enrollment assistance and look for ways to increase eligibility and prevent coverage losses
  • Cease seeking or implementing premiums, work requirements, and other barriers
  • Reduce pharmacy limits, allow advance refills, and cover home delivery of meds
  • Add COVID-19-specific services through state plan amendment or waiver
• Housing
• • Impose an immediate moratorium on evictions
  • Halt public utility shut-offs and homeless encampment sweeps
  • End all ticketing, arrests, and vehicle impoundments for those living in vehicles
• Community Integration
• • Remove barriers preventing approval of respite, personal care services, and childcare
  • Offer mitigation/support for clients whose day provider is closed
  • Amend state plans, waivers, and contracts to ensure Utahns with disabilities can access necessary services immediately
• Education
• • Automatically extend school year for students with IEPs
  • IEP/504 services continue during closure and compensatory services provided to those who miss out on instruction
  • Accessible online learning resources, and accessible alerts from districts
• Employment
• • Unemployment applications must be accessible and benefits available as swiftly and efficiently as possible
  • Provide similar accommodations in home settings to those received in the office
  • Layoffs and other reductions should not target employees with disabilities

Click here for a PDF of the Press Release

Click here for a PDF of the Press Release

Click here for a PDF of the Complaint

Click here for a PDF of the Letter
Dear Governor Herbert,

We write to you today as a coalition of community partners to implore you to issue a stay at home order to prevent the spread of Covid-19 and protect all Utahns with disabilities and those who are elderly. The distressing conditions we are witnessing in other states should serve as a precursor as to what can happen here in Utah. Our state must take action to stop the spread and protect high risk individuals. We recognize the State issued a “Stay at home, Stay safe” directive and appreciate the steps our State has taken to expand testing and issue guidance, and we thank you for your leadership. However, now is not the time for Utahns to ease their efforts. The State needs to follow Salt Lake City and Summit, Davis, Morgan, Weber, and Salt Lake Counties, as well as the majority of states across our nation that have already put orders in place to save lives, protect the most vulnerable in our community, and help health care workers fight the spread of infection.

Many, but not all, people with disabilities have underlying health conditions that put them at higher risk to become severely ill with Covid-19. Like health care workers, people with disabilities are often unable to completely isolate. Individuals with disabilities living in the community may rely on friends, family members, or paid caregivers who help them with daily living. Now more than ever this support may be necessary for some individuals to engage in protective measures such as handwashing, sanitizing frequently touched items, and going out for essential supplies. Slowing the spread of the virus is vital to ensure individuals can continue to receive care in their home, rather than risk going without care or being forced into an institution.

More distressing are large congregate facilities that serve people with disabilities and the elderly. These facilities include nursing homes, assisted living, intermediate care facilities, and psychiatric facilities. Institutionalization alone puts individuals at greater risk of harm due to the segregated nature of these settings. One of the harms we have observed that is relevant to the current pandemic is crowded facilities with low staff to patient ratios. Because of these conditions, congregate facilities are at serious risk for exposure and infection from communicable diseases.

In the state of Washington, the epicenter of the outbreak began at the Life Care Center, a nursing home where more than 30 people died from Covid-19. A New Jersey nursing facility recently announced that all 94 residents are presumed positive. The State Supported Living Center in Texas, a facility that provides residential care for people with intellectual and developmental disabilities, has already reported 50 cases out of 400 residents and 23 employees. In Missouri, 27 long-term care facilities have reported at least one resident or employee who has tested positive for coronavirus.

Utah is home to hundreds of long-term care facilities across the state in rural and urban areas that provide care to thousands of Utahns. We have already begun to hear reports of health care workers in these facilities running out of sanitizing wipes and masks. Our constituents worry that if Utah hospitals become overwhelmed with Covid-19 patients, this will inevitably lead to a rationing of care in a manner that prioritizes the “healthy” over individuals with disabilities and the elderly.

We would like to serve as a resource and partner to protect those with disabilities and the elderly in our State. We would therefore like to offer the following recommendations:

• Establish a long-term care task force of representatives from the Department of Health, the Division of Services for People with Disabilities, the Bureau of Health Facility Licensing, the Long-Term Care Ombudsman, and the Disability Law Center as the State’s Protection and Advocacy Agency. The purpose of this group would be to provide information sharing, as well as to manage and oversee the Covid-19 response in Long Term Care Facilities.
• Ongoing data collection of our state’s long-term care facilities’ ability to access personal protective equipment, cleaning supplies, and the availability of testing for Covid-19.
• Create clear safety protocols for employees working in long-term care facilities in order to stop the spread of infection including requirements such as fever testing upon arrival. Any guidance should be accessible in multiple languages and formats.
• Establish a channel to report suspected cases of Covid-19 in long term-care facilities. This channel should be readily available to the public, residents, and facility employees.
• Expanded licensing efforts with the Bureau of Health Facility Licensing to immediately begin performing targeted infection-control inspections of long-term care facilities. This is crucial to ensure the State is overseeing the care and protection of those who are most vulnerable in our state.
Click here for footnote



We realize a stay at home order is a difficult and drastic measure for our state, so it must be done with care to ensure Utahns’ rights are impacted as little as possible. Any order must be focused on science and public health, and the experts in those fields should direct the process. The order should only be for as long as necessary to protect the public health, and it should be done in a way that does not discriminate.

However, we have continued to witness the devastating impact of Covid-19 on countries abroad, and now here in the United States. With the cases growing daily in Utah, including new cases in long-term care facilities, we believe now is the time to act and join the 41 states and local counties that have already issued stay at home orders. The best way to protect against outbreaks in long-term care facilities and the possibility of health care rationing, is to take preventative measures and continue to flatten the curve.



Sincerely,
Adina Zahradnikova
Executive Director
Disability Law Center


Footnote: A KSL article from March 3, 2020 details that “(t)he Utah Department of Health said they are not doing inspections of nursing homes or assisted-living facilities for the coronavirus.” (https://ksltv.com/432393/utah-nursing-homes-care-facilities-following-cdc-coronavirus-guidelines/). We sincerely hope the State’s position has since changed, as inaction puts thousands of lives in danger. Federal and Washington State officials recently found failures at the Life Care Center in Kirkland to notify state officials about the increasing infections, failed to identify and manage ill residents, and failed to have a backup plan after the facility’s primary clinician became ill. These failures were found to lead to hospitalizations and deaths. A fine of more than $600,000 has been levied against the facility for how it handled the outbreak.
(https://www.nytimes.com/2020/04/02/us/virus-kirkland-life-care-nursing-home.html). The role of licensing and inspection is now more important than ever to mitigate the spread of infection in our long-term care facilities. A failure to increase monitoring efforts in long-term care facilities will have grave outcomes for our State.

Click here to read the full letter in PDF
Click here to read the full letter in Accessible Text

If you receive SSI and unemployment insurance, your unemployment counts as unearned income and will reduce your SSI check almost dollar for dollar. This can cause your SSI check to go down or stop. Even if your payments are suspended, if you stop receiving unemployment within 12 months and become eligible for SSI again, you will not need to complete a new application for SSI.

If you lose your SSI check due to CARES Act-related unemployment insurance, neither your unemployment insurance nor economic impact payment will be counted as income for Medicaid. Keep in mind, however, regular unemployment insurance payments do count as income for Medicaid.

Even though Social Security Offices are closed, it's very important you continue to report your earnings each month during this time. The DLC recommends keeping copies of all pay stubs and other documents you provide, as well as a record of how and when you reported to protect yourself.

Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) recipients who are working and earning money:

You're required to regularly report your monthly earnings to Social Security. Doing so can help prevent overpayments and other problems in the future.

Even though Social Security Offices are closed, it's very important you continue to report your earnings each month during this time. The DLC recommends keeping copies of all pay stubs and other documents you provide, as well as a record of how and when you reported to protect yourself.

Please see the attached flyers from the Utah Work Incentive Planning Services for more information on how to report your earnings.

Click here for SSI flyer

Click here for SSDI flyer

If you have questions on how working impacts your SSDI/SSI or other benefits, call the DLC to make an appointment with our benefits planner.

Date: May 1, 2020

The EIP belongs to the Social Security or SSI beneficiary. It is not a Social Security or SSI benefit. A representative payee should discuss the EIP with the beneficiary. If the beneficiary wants to use the EIP independently, the representative payee should provide the EIP to the beneficiary. If the beneficiary asks the representative payee for assistance in using the EIP in a specific manner or saving it, the representative payee can provide that assistance outside the role of a representative payee.

Date: May 1, 2020

Under the Social Security Act, a representative payee is only responsible for managing Social Security or SSI benefits. An EIP is not such a benefit. A representative payee should discuss the EIP with the beneficiary. If the beneficiary wants to use the EIP independently, the representative payee should provide the EIP to the beneficiary. If the beneficiary asks the representative payee for assistance in using the EIP in a specific manner or saving it, the representative payee can provide that assistance outside the role of a representative payee.

Date: May 1, 2020

Because an EIP is not a Social Security or SSI benefit, representative payees are not required to account for the EIP when they complete their annual accounting form.

Date: May 1, 2020

Because an EIP is not a Social Security or SSI benefit, SSA does not have authority to investigate or determine whether the EIP has been misused. However, if SSA receives an allegation that the EIP was not used on behalf of the beneficiary, SSA may decide to investigate for possible misuse of the beneficiary’s Social Security or SSI benefit payments. SSA may also determine the representative payee is no longer suitable and appoint a new representative payee.