On February 11th, the New York Association on Independent Living sent the following to Governor Cuomo concerning published eligibility criteria to receive COVID-19 and the process of distributing the vaccine to people with disabilities. The full letter is copied below and available as a PDF:

 

 

February 11, 2021

Honorable Governor Andrew M. Cuomo

Governor, New York State

NYS State Capitol

Albany, NY 12224

Sent via email

 

Dear Governor Cuomo:

The New York Association on Independent Living (NYAIL) represents Independent Living Centers (ILCs) and the people with disabilities they serve. NYAIL leads statewide ILC efforts to eliminate physical, communications, attitudinal, and other barriers to all aspects of life. We are writing to request information on how the vaccine will be delivered to people with disabilities in an accessible and equitable manner. Most people with disabilities are at increased risk of contracting and dying from COVID-19. We are happy that the State has broadened eligibility to a number of additional categories and largely following CDC guidelines. We have several questions and concerns however which the State must address to ensure people with disabilities can access the vaccine.

Eligibility

NYAIL and its members are concerned that the eligibility list is poorly worded so that, in different sections, it is overly restrictive while in other sections it is overly broad.

 

1) We noted that the Centers for Disease Control (CDC) had listed Downs Syndrome on their list, but New York State has expanded the list to include “developmental disabilities.” It is our understanding that Downs Syndrome was included on the CDC list because researchers believe that background immune abnormalities, combined with extra copies of key genes in people with Downs Syndrome – who have three copies of chromosome 21 rather than the usual two – make them more vulnerable to severe COVID-19. The inclusion of “developmental disabilities” as a category seems to expand eligibility for the vaccine to people who may not be at greater risk, such as individuals with learning disabilities. Conversely, because the state is heavily relying on the Office of People with Developmental Disabilities (OPWDD) to meet the needs of this community and OPWDD does not serve individuals with Muscular Dystrophy (MD), we may also be inadvertently failing to address the needs of some individuals who have serious risks associated with COVID-19 infection.

 

2) Another category listed as eligible as of February 15 is neurological conditions, including dementia. Again, this broad category includes a wide range of conditions that may or may not have greater risks related to COVID-19. It is our understanding that no guidance has been given by the state and consequently individual providers will have their own interpretations potentially leading to disparities in the availability of the vaccine.

 

3)  While it is recognized that “pulmonary disease” is a risk factor, there are individuals who 3)  While it is recognized that “pulmonary disease” is a risk factor, there are individuals who have breathing difficulties – including the need for a ventilator – which is not based in a “disease” per se.  We are concerned that such individuals may be inadvertently screened out.
Additionally, some conditions are not included in the list.


4)  Despite studies showing Schizophrenia being the second highest risk factor for dying of COVID-19, they are not currently listed as an eligible population. This must be addressed and people with a schizophrenia diagnosis must be included as eligible for the vaccine.


5)  We are concerned that some disabilities which are less common have been excluded from the list simply because there are not enough individuals with those conditions to create the statistical data to substantiate their inclusion in this list.  For example, although Osteogenesis Imperfecta (OI) is primarily known as a bone disease leading to frequent fractures, at its core is a genetic defect in collagen manufacture, assembly, and/or quantity which makes up a  large portion of the connective tissue of the lungs. Even though this appears to be a high risk group, like other less common conditions, there are not enough individuals with OI to create the statistical data needed for inclusion. Finally, with regard to eligibility, individual counties may be releasing screening tools that differ from the state’s list.


6)  As an example, advocates have provided the state with screenshots of the screening tool in Albany County and noted significant differences with the state’s list.  Notably, that list includes “smoking” and although a history of being a smoker may correlate to poorer outcomes with COVID-19, it was not included on the state’s list.
We are gravely concerned that the confusion and uneven rollout of this phase of vaccination is failing to address the needs of individuals at significant risk while creating confusion, loopholes and false expectations.

Process

There are significant concerns about the process the state is using.

 

1)  There are serious access issues with the state vaccination sites.  For example, even though the Dome Arena is in a suburb of Rochester, it is essentially inaccessible by public transportation.  Riders need to do a “ten-minute walk” on a busy road that has no sidewalks in order to get to the vaccination site.  This is particularly dangerous in winter months when snow and inadequate light make such efforts truly treacherous.


2)  The rollout of the vaccine to 1a-eligible healthcare workers has been deeply problematic. Although the hubs indicate that virtually all 1a-eligible individuals have been vaccinated, home care workers – particularly consumer-directed personal assistants – have struggled to get access to the vaccine.  In some cases, they have been turned away from the healthcare sites charged with vaccinating this group and sent to the state sites where there is extremely limited vaccine.


3)  There does not appear to be a plan to reach individuals with disabilities who have accessibility and transportation barriers to securing the vaccine, often referred to as "homebound" or “shut-ins”. Effort needs to be made to target buildings that are built for seniors and/or people with ins”. Effort needs to be made to target buildings that are built for seniors and/or people with disabilities for co-location of vaccination sites for those who cannot go out. Alternatively, canvassing could be used as is done in an emergency to identify individuals needing a vaccination and getting them vaccinated.  Such efforts will be particularly important in more rural parts of our state where transportation can be an insurmountable barrier.

 

4)  No information for the public has been posted about the accessibility of sites and availability of reasonable accommodations (large print forms, ASL, reduced wait time, seating for those in line who cannot stand for periods of time, etc.) No site includes signage about rights to reasonable accommodations or how to request them.


5)  Websites are primarily being used to schedule vaccines. Each county should also have a phone number available for those without computer access. Many people with disabilities and older New Yorkers do not have computers or an email address. The process seems to vary from county to county, making it even more confusing to navigate. In some counties, the ILCs are creating email addresses for people to help them just to sign up for the vaccine because there is no way to sign up without an email address.


6)  There are also many pages and documents to fill out, more once on site. This could be difficult for someone to do independently with certain conditions, including fatigue, limited dexterity, or visual impairments, to name a few. Assistance needs to be provided to assist these individuals.

 

Generally speaking, the Disability Community has not been effectively engaged in the rollout of the vaccine and the fight against this virus.  Although local vaccine hubs are describing themselves as “diverse” there is limited representation from disability-led organizations. Failing to engage us in a thoughtful manner has undermined the state’s stated goal of an equitable distribution of the vaccine in the Disability Community and particularly impacted BIPOC with disabilities.


We would very much appreciate a response to our questions and concerns.

 

Sincerely,

Lindsay Miller, Executive Director

 

CC:

Tina Kim, Assistant Secretary for Health

Rachel Baker, Excelsior Fellow for Health

Kerri Neifeld, Assistant Secretary for Human Services

Jihoon Kim, Senior Policy Advisor for Human Services


The New York Association on Independent Living has signed on to a petition calling for New York to move away from institutional settings and support community-based housing and supports. Read the full petition as follows:

 

PETITION TO SHIFT NEW YORK’S LONG-TERM CARE SYSTEM FROM INSTITUTIONAL SETTINGS TO COMMUNITY-BASED HOUSING & SUPPORTS

January 19, 2021

Dear Governor Cuomo, Speaker Heastie and Majority Leader Cousins, and the Leadership and Members of the Assembly & Senate Committees on Aging, Health & Mental Hygiene:

We the undersigned, petition New York State government to take immediate steps to reorient our system of long-term care from congregate facilities to community-based services, supports, and housing. New York must realize the long-forgotten promise of the Americans with Disabilities Act and the Olmstead Integration Mandate. To meet basic safety, human dignity, and the choice of the vast majority of New Yorkers, community-based care must be the presumption, NOT the exception, in our long-term care system.

These steps are particularly urgent in response to the COVID-19 pandemic. As of October 26, 2020, 6,543 New Yorkers lost their lives to this pandemic while living in nursing facilities. We know that many more people have died in hospitals after contracting COVID-19 in nursing facilities, data that the New York State Department of Health has refused to provide.

While COVID-19 remains a continuing threat, it is only the latest evidence demonstrating nursing facilities’ longstanding failure to control infection and provide basic health care to residents. Even before the pandemic, 82 percent of all nursing homes had infection prevention and control deficiencies cited in one or more years from 2013-2017, according to the U.S. Government Accountability Office. Forty-eight percent had such a deficiency cited in multiple years. Poor infection control was pervasive prior to COVID, both in New York State (where 54 percent of nursing homes reporting deaths from COVID had recent citations for infection-related violations) and in the out of state facilities where we send our children, parents, and other family, such as at the Wanaque facility in New Jersey, where 11 children died from the adenovirus in 2019 due to lapses in hand-washing and infection control, substandard care and poor oversight.

We send our family members to nursing facilities because the professionals tell us they need 24-hour care, and it is the only place to receive such services. However, the promise of safety, care and comfort in nursing facilities has not been met. Only a limited portion of services are skilled nursing. In fact, the average number of total care hours provided in New York’s nursing facilities in the second quarter of 2020 was only 3.51 hours per day – ranking 28th out of all 50 states despite the high payment rates for nursing homes in NYS.[1] This level of care is less than what has been federally recommended in nursing facilities (at least 4.1 hours of total care, including .75 RN care – a level that can still be provided in the community).


Being able to choose where to live and how to receive needed supports, and by whom, should be recognized as a basic human right for all New Yorkers. Community-based housing with supports and services is the first choice of older adults who want to remain in their communities. Nursing services and personal care are provided safely, effectively and generally at lower cost in the community. The COVID-19 pandemic is a tragic wake-up call, and a test of our ability to re-imagine long-term care in ways that replace facilities with communities, nursing “homes” with real homes, and segregated approaches to care with assistance that permits full integration into the mainstream of community life.

We must face the truth that the nursing facility model has failed. It is time to work cooperatively toward a solution. We are calling upon you, the leaders of our great State, to take immediate action, described below, as first steps to a better future for all New Yorkers.

In order to keep more people in their homes and communities we must:

1. Eliminate the institutional bias created by policies that create and increase barriers to community living.

A. Roll back the recently reinstated nursing facility carve-out from Medicaid Managed Long Term Care (MLTC). In a reversal of the State’s 2013 Olmstead Plan, the carve-out was reinstated in 2019 for people who stay longer than 90 days in a nursing facility. This disenrollment greatly jeopardizes their transition to the community, and incentivizes MLTC plans to institutionalize individuals who are more disabled and have a greater need for services.

B. Roll back the new restrictions on access to consumer-directed personal assistance and agency-provided personal care services. These restrictions are intended to save Medicaid dollars, but will in fact drive people to leave their homes to receive more expensive and less humane facility care.

C. Roll back the newly required 30-month “lookback” review of finances in order to be eligible for Medicaid for community-based long term care services. This will cause delay of necessary services and force people into facilities while this lengthy process unfolds, and their mental and physical health will rapidly deteriorate.

2. Expand community-based services, supports and housing opportunities for New Yorkers who are disabled and/or are older adults.

A. New York State must address the personal care workforce crisis that has been created by decades of stagnant reimbursement and wages. Home care workers must receive livable, competitive wages (including benefits) that fully and appropriately acknowledge the vitally important, front line services they provide and helps to ensure their continuing, long-term availability. 

B. Expand community-based care coordination for people who have mental illness and other chronic disabilities and who are enrolled in New York’s Medicaid Health Homes program. Current care coordination services are stretched far too thin, leaving coordinators with unmanageable caseloads and thwarting their effectiveness. Too many people who need and could benefit from cost-effective community services do not receive them because they need assistance and encouragement to navigate the complexities of New York’s fragmented support systems.

C. Behavioral health HCBS services must be expanded to serve individuals with histories of institutionalization in nursing homes, and eligibility should be expanded to individuals receiving Social Security Disability Insurance, not exclusively Supplemental Security Income.

D. Make rapid response support available for families experiencing a long-term care crisis. Families are often too overwhelmed to deal with all of the moving parts, (e.g. aggressive hospital discharge planners, arranging for aides, home modifications, and durable medical equipment) necessary for successfully returning a newly disabled person to their homes, resulting in unnecessary SNF placements. Such support would enable some to navigate this system successfully and return to their homes.

E. Expand “aging in place” housing models in integrated settings and the successful and cost-efficient supported housing model. For example, the Empire State Supportive Housing Initiative can fund properties to have certain numbers of accessible units and available staff. “Canopy of Neighbors” is another important community-based model that avoids institutionalization. The supported housing model should both be increased for those for whom it is currently used, such as people with psychiatric diagnoses and developmental disabilities, and made available to people with other cognitive disabilities, such as TBI and dementia. New York should promote policies that facilitate private investment in housing options that reduce costs and allow older adults to conserve their assets by avoiding institutional care.

F. Use targeted funding for housing and program development to establish rent subsidies for people who are older adults and/or physically disabled. Federal programs like the Housing Choice Voucher Program (“Section 8”) have been successful in keeping low income families affordably housed, but there are years-long waiting lists for these vouchers. People who have disabilities and/or are older often live on a modest fixed income from which they cannot afford to pay market rents, resulting in SNF placement. This is not only an affront to their dignity, but an unnecessary Medicaid expense that New York can ill afford.

G. Expand NYS housing subsidies under the Nursing Home Transition and Diversion and TBI Medicaid Waivers for long-stay residents transitioning from nursing homes and adult care facilities to housing in the community. These have successfully enabled thousands of New Yorkers to leave institutions and return to the community.  Despite their success, recent changes have reduced the subsidy and made them much more difficult to obtain. This should be reversed immediately. Relatedly, expand the Special Income Standard for Housing Expenses After a Nursing Home or Adult Home Stay to include people accessing personal care or CDPAP through the Immediate Need procedure, not only those in MLTC plans.

H. Expand Open Doors Transitional Support. Open Doors transition specialists facilitate transitions to the community for nursing home residents, including locating housing and subsidies, accessing needed services, waivers, and supports, and providing education to develop independent living skills. The New York Association for Independent Living coordinates the Open Doors program. Many more specialists are needed, particularly in the New York City region.

I. Expand the Access To Home Program. This program provides assistance to eligible families to make accessibility modifications allowing them to remain in their homes rather than be displaced. Aging in place should always be the first option when faced with long term care challenges.

The time is now. New York State must take immediate steps to re-design our system of long-term care from congregate facilities to community-based services, supports, and housing.

ADAPT Capital Region

American Civil Liberties Union of New York

Albany Law School

ARISE

Bay Ridge Center

Brain Injury Association of New York State

Brooklyn Center for Independence of the Disabled

Cardozo Bet Tzedek Legal Services

Catskill Center for Independence

Center for Disability Rights

Center for Independence of the Disabled, NY

Chinese-American Planning Council

Collaborative for Palliative Care

Community Based Services, Inc.

Commission on the Public’s Health System

Consumer Directed Choices, Inc.

Consumer Directed Personal Assistance Association of New York State

Disability Rights New York

Ely J. Rosenzveig & Associates, PC

Empire Justice Center

Finger Lakes Independence Center

Futterman, Lanza, & Pasculli, LLP

Geel Community Services, Inc.

Hand In Hand: The Domestic Employer’s Network

Independent Home Care

Independent Living, Inc.

Independent Living Center of the Hudson Valley

Law Office of Charlene E. McGraw

Law Offices of Donna Furey

LIFE Trusts

Long Island Center for Independent Living

Long Term Care Community Coalition

Mental Health Association in Orange County

Mobilization for Justice

National Alliance on Mental Illness, NYC

National Center for Law and Economic Justice

National Domestic Workers Alliance

National Multiple Sclerosis Society

New York Association on Independent Living

New York Association of Psychiatric Rehabilitation Services

New York Caring Majority

New York Lawyers for the Public Interest

New York Legal Assistance Group

New York Memory Center

New York State Independent Living Council, Inc.

Nina Loewenstein, Esq., formerly associated with Disability Rights New York

Northern Regional Center for Independent Living

Psychotherapy Associates of Westchester

Rafferty & Redlisky, LLP

RAMA Associates LLC

Ranni Law Firm

Raskin Rocco Law PLLC

Recco Home Care Service, Inc.

Resource Center for Accessible Living

Resource Center for Independent Living

Rochester Spinal Association

Rockland Center for Independent Living

Sim Goldman, Esq., Disability rights attorney

Southern Tier ADAPT

Southern Tier Independence Center

Special Support Services

Taconic Resources for Independence, Inc.

Urban Justice Center Mental Health Project

Western New York Independent Living

 

[1] Based on federal MDS data, available at https://nursinghome411.org/staffing-q2-2020/.


On Tuesday, October 20th at 6:30 p.m.

An exclusive live Q&A with Judy Heumann, moderated by New's 12 Reporter and Moderator, Michelle Brown. Hear from special guests including Tony Award-Winning Actress and Singer Ali Stroker, Executive Director of the CIDNY, Susan Dooha, and more!

Additionally, experience a cooking demo presented by Chef Joe Brefere, Chef & Instructor at the Culinary Tech Center.

Special appearances by:
Tony Award-Winning Actress, 
Ali Stroker
New 12 Reporter and Moderator, 
Michelle Brown
The Hudson Valley's Favorite Weatherman, Joe Rao, as the MC
Executive Director, 
Center for Independence of the Disabled New York, 
Susan Dooha
and more!
 
 
Event Contact: Chatham Greenfield at This email address is being protected from spambots. You need JavaScript enabled to view it. or 914-968-4717 ext. 118
 
FOR IMMEDIATE RELEASE ON OCTOBER 20TH 2020 6:30 PM
JOIN WDOMI IN CELEBRATING DISABILITIESWITH INTERNATIONAL DISABIILITY RIGHTS ACTIVIST JUDY HEUMANN
 
October 9, 2020 (Westchester County, NY) – Westchester Disabled on the Move (WDOMI) will be joined by Tony award-winning Broadway star Ali Stroker, eight-time Emmy nominated meteorologist Joe Rao, and more in a virtual Zoom event to celebrating the accomplishments of disability rights icon Judy Heumann. Judy was denied her NY teaching license in 1970. The Board of Education felt a teacher in a wheelchair was a danger to students if there was a fire. Judy sued. Judy won. She became the first NYC teacher who uses a wheelchair. Judy made history again when she led the famous 504 sit-in that led to the 504 Rehabilitation Act’s passing, the first disability civil rights law in the United States. She was one of the early initiators of the Independent Living Movement that laid the foundation for centers like WDOMI. She went on to serve in both the Bill Clinton and Barack Obama administrations. To learn more about her stellar accomplishments, check out her memoir Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, the Netflix documentary Crip Camp, produced by Michelle and Barack Obama, and read WDOMI’s article “Hello Judy” , full of information and resources about her decades of disability rights advocacy. The hour-long virtual event will be emceed by the former Chief Meteorologist of News 12 Westchester, Joe Rao, and includes a live Q&A with Judy, moderated by News 12 Reporter Michelle Brown, where the attendees will have the opportunity to ask Judy questions.
 
Be sure to register for the Zoom event via Eventbrite. You can also tune in on Facebook live at Facebook.com/WDOMI
 
Activists like Judy Heumann paved the way to making it possible for the 41 Independent Living Centers in NYS and the over 400 throughout the United States that support People with Disabilities. They provide the support needed to not only survive but thrive in their community and not be institutionalized. Susan Dooha, Executive Director of CIDNY – the largest NYS Independent Living Center – will share at the event why the Independent Living Centers are especially crucial today. Ali Stroker won her Tony award for playing Ado Annie in the acclaimed revival of Oklahoma! In doing so, she made history as the first person in a wheelchair to ever win a Tony. But equally great is her role as Judy Heumann in Comedy Central’s Drunk History: Judy Heumann’s Fight for Disability Rights. The actress and singer will make a special appearance during the event to talk about her connection to Judy and more.” Few of us can say that we have affected the lives, improved the lives of millions – Judy can.” WDOMI Executive Director Maria Samuels says. “She would never do that though, but we can, and we will, on October 20th.”
 
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