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The New York Association on Independent Living, along with 25 other organizations sent the letter copied below to Governor Cuomo regarding New York’s COVID-19 policies for people with disabilities living in congregate settings. The undersigned organizations have been collectively dismayed at the alarming death toll in nursing facilities and other congregate settings and felt a strong cross-disability response would be the most impactful. 

View the letter as a PDF at: 


April 24, 2020

VIA ELECTRONIC MAIL

Re: NY’s COVID-19 policies for people with disabilities living in congregate settings

Dear Governor Cuomo,

The undersigned disability rights organizations are writing in regard to the State’s COVID-19 policies and procedures regarding people with disabilities living in congregate care facilities, including nursing homes, adult homes, supportive housing, group homes for people with psychiatric and developmental disabilities, and psychiatric hospitals.

As you have recently referenced in your press briefings, people in these facilities are at a very high risk for contracting COVID-19 once they enter a facility due to shared and often crowded living quarters. Many programs have shared bedrooms and bathrooms greatly limiting the ability to self-isolate when needed. A lack of personal protective equipment (PPE) for the staff and residents is exacerbated when programs are understaffed. Many of these facilities faced understaffing prior to the current public health crisis. This situation in many instances has been greatly exacerbated by the spread of the virus and staff being out sick with the coronavirus, providing childcare while schools are closed, or caring for family members that may be sick. In fact, the crisis has grown well beyond a state of emergency for thousands of New Yorkers.

Moreover, many of the people living in these facilities are in the very high-risk category for dying of the virus. This has sadly and disastrously been playing out in NYS facilities over the past month or so. Fatalities in nursing homes and adult homes make up 25% of all fatalities in New York State due to the coronavirus. New York State must make protecting these individuals the highest priority moving forward. Releasing data and investigating nursing homes is a start, but there is much more that the State must do immediately in order to save the lives of thousands of people living in these facilities.

New York State must ensure the protection and rights of the residents in state-funded facilities and programs. This includes: 

1) Ensuring for safe, expedited discharges for individuals that request it. Social distancing and preventing exposure to the virus is the most effective way to save lives. The State must ensure that disabled New Yorkers currently in congregate settings are afforded the opportunity to effectively social distance by leaving these congregate settings for self-quarantine. The state already has programs in place that can help facilitate transitions to alternative living arrangements (such as Open Doors, Medicaid waiver programs, Ombudsman programs, etc.), however the process can often take several months to facilitate. New York State must waive certain regulations and allow for flexibility in the system to support expedited transitions, including:

  1. Require social services districts or Medicaid waiver programs to authorize services within 24-hours of the residents’ request.
  2. Ensure these individuals have a place to go where they can self-quarantine and socially distance. Individuals who have family members or friends who can take them in, can move in with their families using FEMA funds to provide temporary accessibility if needed (i.e. a temporary ramp). For individuals who do not have a place to go, use FEMA funds to house them in area hotels and college dormitories which are underutilized because of the COVID-19 pandemic as emergency housing. For individuals in adult homes, the state should support temporary transfers of residents to hotel rooms with ‘front door’ clinical and support staff, similar to the SRO model of housing for people with mental health and related disabilities, as alternatives to adult home settings and policies that currently threaten their health.
  3. For individuals who have family members or other individuals that can provide personal assistance services, waive the rules that: i. require a health assessment to become a consumer directed personal assistant and ii. limit the ability of family members to provide personal assistance services under the program.
  4. To meet the needs of individuals who require agency-managed home care services, the state should immediately assess provider capacity for accepting new cases and refer these individuals based on that availability. Home care agencies will accept these cases upon referral and must not be permitted to refuse to serve these individuals. Where warranted to ensure adequate staffing allow Personal Care Aides to begin working with limited training.
  5. Use FEMA funds to allow these individuals to buy delivered meals directly or fund community-based organizations – like Independent Living Centers – to assist with food and meals.
  6. All discharges must be voluntary. The state must ensure that individuals in community hospital psychiatric units who are being considered for transfer to state hospitals must give their approval and that the state must promptly reverse the trend towards increased use of the state facilities as the virus abates, ensuring that New York meet its legal obligation to deliver services for people with disabilities in the most integrated settings across New York. Similarly, individuals in nursing facilities should not be discharged or transferred against their will.

2) Stopping the spread within state-funded facilities and programs. For the individuals that remain in these facilities, at a minimum, the State must:

  1. Ensure adequate availability of Protective Personal Equipment (PPE) and increased staffing within facilities. Just as the State called on health care workers to sign up to work in hospitals, the State must do the same to address understaffing issues. Overworked aides, particularly those travelling between facilities and lacking the necessary PPE are likely carriers of the virus. Further, as the virus spreads throughout facilities and workers become ill, people are not receiving the care they require, leading to suffering and additional health problems. Similarly, NYS and NYC must greatly improve their acquisition and distribution of masks and PPE to adult home residents and staff.
  2. Prioritize testing of residents and workers in these facilities. Facilities must use this information to quarantine people who are positive from the rest of the population. People who are not positive should be provided the necessary resources they need to leave the facility.
  3. Create social distancing opportunities within the facilities, including at mealtimes, in bathrooms and at all treatment and rehabilitation sessions, groups and other activities. Groups can be held for people who remain six feet apart from each other, and treatment and support can be provided virtually as it is now for outpatients, via phone, text, zoom and online applications. In some instances, inpatients and residents wearing masks and PPE can get much needed time off of the wards in the company of staff who are also afforded masks and PPE.
  4. We fully support recommendations offered by The Legal Aid Society and the Prisoners’ Legal Services of New York that have urged Governor Cuomo to grant clemency to vulnerable state prison inmates, including those who are older or have chronic medical conditions. Contrary to recent public statements by the Department of Corrections and Community Supervision, people with “a significant mental illness” must indeed be considered are one of the categories of people who are eligible for release.
  5. Eliminate the requirement that nursing facilities must accept individuals who have tested positive with COVID-19.

3) Collecting and making public data specific to state-funded facilities. It wasn’t until last week that the State released data related to COVID-19 in nursing facilities, however the data was incomplete. The data made public only shows the nursing facilities that have had five or more deaths related to COVID-19. The state must release the list of all facilities and programs that have had a positive COVID-19 case. This is essential for garnering local resources and supports in concert with state and federal resources. As you know, the sooner this information is made available, the faster action can be taken, and the more lives will be saved.

While we greatly appreciate your strong leadership at this time, so much more is needed to ensure that New Yorkers with disabilities are afforded the safety, support and dignity to which they’re entitled, especially during these threatening times.We urge you to engage in discussions with our groups to help develop and implement these policies at both the state and local level. For follow up, please contact:

Lindsay Miller, New York Association on Independent Living, This email address is being protected from spambots. You need JavaScript enabled to view it.

Harvey Rosenthal, New York Association Psychiatric Rehabilitation Services, This email address is being protected from spambots. You need JavaScript enabled to view it.

Bryan O’Malley, Consumer Directed Personal Assistance Association of NYS, This email address is being protected from spambots. You need JavaScript enabled to view it.

Glenn Liebman, Mental Health Association in New York State, This email address is being protected from spambots. You need JavaScript enabled to view it.

 

We look forward to your prompt action in response to this letter.

Sincerely,

Alliance for Inclusion and Innovation

Association for Community Living

Brain Injury Association of New York State

Coordinated Behavioral Health Services Independent Practice Association, LLC

Catholic Charities Disabilities Services

Consumer Directed Personal Assistance Association of NYS

Chinese-American Planning Council (CPC)

Coalition for the Homeless

Commission on the Public’s Health System

Community Based Services, Inc

Community Consortium

Corporation for Supportive Housing

Disability Rights New York

Hand-in-Hand: The Network of Domestic Employers

International Association of Peer Supporters

Mental Health Association of NYC

Mental Health Association in NYS

National Alliance on Mental Illness, NYC

National Alliance on Mental Illness, NYS

New York Association of Psychiatric Rehabilitation Services

New York Association on Independent Living

New York Lawyers for the Public Interest

New York Legal Assistance Group

New York State ADAPT

North Country Access to Health Care Committee

The Legal Aid Society

 

CC:

Paul Francis, Deputy Secretary for Health and Human Services

Megan Baldwin, Assistant Secretary for Health

Jeremy Shockett, Deputy Secretary for Public Safety

Howard Zucker, M.D., J.D., Commissioner of Health

Mark Kissinger, Special Advisor to the Commissioner for Long-Term Care, Department of Health

Lana Earle, Director of Long-Term Care, Department of Health

Valerie Deetz, Deputy Director, Center for health Care Provider Services & Oversight, Department of Health

Ann Marie Sullivan, Commissioner, Office of Mental Health

Theodore Kastner, Commissioner, Office of People with Developmental Disabilities

Anthony J. Annucci, Acting Commissioner, NYS Department of Corrections and Community Supervision

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