Advocacy Strategies for Ensuring 
Access to Services and Healthcare for 
Survivors with Disabilities During 
COVID-19 and Beyond 

May 19, 2020 

Olga Trujilo, J.D., Caminar Latino 
Kelly Israel, Autistic Self-Advocacy 
Network 



Olga Trujillo, JD 

Strategies for Directly Supporting 
Survivors with Disabilities During 
COVID-19 



A word about me and Dissociative 
Identity Disorder (DID) 


Olga Trujillo sitting next to a bookshelf 



Challenging our Coping Strategies 

• 
There are strategies we employ each 
day to help us move through the 
world. 
• 
Creating routine 
• 
Limiting stimulation 

Challenging our Coping Strategies 
(2) 

• 
Managing tasks and schedules – not 
multitasking 
• 
Creating predictability – knowing what 
to expect 
• 
Changing Conditions that create 
challenges 

Consequences of Change 

-Stressful and disruptive 
-Creates chaos 
-Challenges our ability to think and 

relax 
-Creates fear and worry 



Consequences of Change (2) 

-Kicks up anxiety and panic 

-Leaves us feeling exhausted, 
unfocused, manic, caught in a loop of 
irritability, distrust and tension 

-Makes it hard to get up and through 
our day 

-Dissociative 



What You Can Do 

-Help and support regaining routine 
-Be patient as we settle into routine 
-Help us as we figure out how to 

comply with new requirements 

-Social distancing 

-Wearing masks 



What You Can Do (2) 

-Help us plan and create predictability 
at a time of great uncertainty 
-Personal care 
-Health care 
-Plans for quarantine if someone 
gets sick 



What You Can Do (3) 

-Financial 
-Work 
-Getting food etc. 



What You Can Do (4) 

-Remember we are super capable, 
functioning people 
-We might do it differently – but we 
are still here 
-Help and support with that in mind 



What You Can Do (5) 

-Support us in deciphering between 
what we can and cannot control 
-Support us in our planning over 
what we can control 
-Remind us that we don’t have to be 
perfect 
-Remember we will not be perfect 



What You Can Do (6) 

-Learn about grounding techniques 
-Help us stay grounded in times of 
high stress, fear and anxiety 



Kelly Israel, Policy Analyst 
Autistic Self Advocacy Network 

ADVOCACY TOOLS FOR ADVOCATES AND 
PEOPLE WITH DISABILITIES DURING COVID-19 



The COVID-19 Information Disparity 

• 
It is critical that people with disabilities, supporters, 
advocates be provided with the information and 
resources they need to advocate for healthcare 
rights during this pandemic 
• 
People with disabilities (“high risk populations,” 
“the most vulnerable,” people in congregate 
settings + nursing homes) disproportionately likely 
to be infected and die from COVID-19 
• 
COVID-19 patients with disabilities are being denied 
medically necessary services and supports and cut 
off from support networks 

COVID-19 Information Disparity (2) 

• 
Nonetheless: 
• 
Limited information on COVID-19 that is 
cognitively and physically accessible to people 
with disabilities 
• 
State and local advocates often lack critical 
information, tools, and resources that may be 
utilized to defend their clients and constituents 

Plain-Language Resources for 
Understanding COVID-19 (1) 

• 
People with intellectual and 
developmental disabilities 
(I/DD) and other cognitive 
disabilities must understand 
what COVID-19 is, how it is 
transmitted, how to protect 
against it, to protect 
themselves 
• 
ASAN has produced a plain 
language video on COVID-19 

Plain-Language Resources for 
Understanding COVID-19 (2) 

• 
Green Mountain Self Advocates (GMSA) and 
ASAN together produced a comprehensive 
guide to the coronavirus pandemic for self 
advocates 
• 
The guide covers a diverse variety of topics, 
including what the coronavirus is and how to 
protect yourself from it, in simple language 

Resources for Understanding COVID19 
for People with Disabilities 

• 
A number of disability rights organizations 
have released instructive guides for the 
people they serve or their caregivers on 
COVID-19 
• 
Q&A on COVID-19 and Down Syndrome 
• 
Wheelchair and Assistive Technology 
Precautions for COVID-19 
• 
Spina Bifida Association’s COVID-19 guide 
• 
A list of guides can be found on AADMD’s 
“Resources” page 



Advocating for the Rights of People with 
Disabilities during COVID-19 (1) 

• 
Remember: Your legal rights and those of your 
clients are not waived just because of COVID19 
• 
Hospitals, public and private, are subject to 
Title II or Title III of the Americans with 
Disabilities Act (ADA) 

• 
Title II: Prohibits discrimination in state and 
local government run hospitals + clinics 
• 
Title III: Hospitals operated by corporations, 
private owners that are open to the public 

• 
Section 504 of the Rehabilitation Act: 
Hospitals and clinics run by the federal 
government 

Advocating for the Legal Rights of People with 
Disabilities during COVID-19 (2) 

• 
The ADA and Section 504 prohibit discrimination on 
the basis of disability in the provision of healthcare 
services 
• 
Prominent disability rights attorneys have argued 
successfully that this prohibits hospital or state 
triage policies that discriminate on the basis of 
disability 
• 
HHS has put out a bulletin on the civil rights of 
people with disabilities during the COVID-19 
pandemic 

Advocating for the Legal Rights of People with 
Disabilities during COVID-19 (3) 

• 
The ADA and Sec. 504 also mandate that people 
with disabilities must be provided with effective 
communication 
• 
Title III requires that priority be given to “person’s 
preferred method” 
• 
You can and should argue this means you must be 
provided with sign-language interpreters, AAC, 
communication aides in hospitals 

Advocacy Resources and Tools on 
COVID-19 and Legal Rights 

• 
The Administration for Community Living (ACL) has 
released a list of resources people with disabilities 
and healthcare advocates can utilize to define and 
defend their rights 
• 
The American Psychological Association’s “How 
disabled Americans can cope with the COVID-19 
crisis” page 
• 
DREDF has released “Know Your Rights to Medical 
Care: COVID-19” one-pagers 

Reasonable Accommodations and 
Supporters in Hospitals 

• 
People with disabilities have the 
right to the reasonable 
accommodations they need to 
receive the same quality of care as 
people without disabilities 
• 
Nonetheless, personal care assistants 
and supporters have reportedly 
been denied access to their COVID19 
positive clients in hospitals 

• 
The following best practices 
(“advocacy steps”) and resources will 
assist you in obtaining these 
necessary services 

Advocacy Step 1: Convey Information 
on Needs in Medical Settings 

• 
Sometimes the disabled person merely requires a 
clear-cut way of stating that their supporters and/or 
reasonable accommodations are medically 
necessary services 
• 
GMSA’s Self Advocate’s Guide to the Coronavirus 
contains a plain language Medical Information Form 
which a PWD can fill out 

• 
Stony Brook University created a form that people 
with disabilities can fill out that describes their 
support needs in hospitals, customized by state 
• 
The Illinois Council on Developmental Disabilities’ My 
Health Passport 

Advocacy Step 2: Requesting A 
Change in Hospital Policy 

• 
If a request for reasonable accommodations does 
not work, people with disabilities and their 
advocates may need to request and justify a change 
in hospital policy 
• 
GMSA’s Self Advocate’s Guide to the Coronavirus 
contains a template letter that people with 
disabilities can submit to hospital staff or directors 
to request a policy change 

• 
It may be useful to show them the opinions of 
prominent provider organizations on the subject, 
• 
AADMD’s policy brief on the rationale for revising 
hospital “No Visitors” policies for COVID-19 patients 

Advocacy Step 3: Collaborate with 
Disability Rights Organizations 

• 
ASAN and many other organizations on CCD have 
released letters to governors and hospital 
administrators detailing the legal and public policy 
rationale for allowing reasonable modifications to 
hospital policies 
• 
Reach out to these organizations to request advice 
and use their policy briefs to make legal arguments 
that access to reasonable accommodations is 
mandatory under federal law 
• 
Reach out to Protection and Advocacy (P&A) and 
Legal Aid organizations in your state 

Access to Government Benefits 
During the COVID-19 Pandemic 

• 
Many people with disabilities and their caregivers and 
supporters have been concerned that they will be unable to 
access government funded LTSS during the COVID-19 
pandemic, or unable to receive their stimulus checks due to 
their receipt of Social Security 
• 
GMSA’s plain language resource has advice on both what to 
do concerning LTSS, the stimulus checks , and how to get 
unemployment benefits if you have recently become 
unemployed 
• 
When advocating on this issue: The Center for Public 
Representation (CPR)’s COVID-19 page contains information 
on legislation, public policy, opposition to waivers of 
Medicaid-funded services, and ways to get involved 

Always Remember: During the Worst 
of Times People with Disabilities Have 
Rights, and They’re Worth Fighting 
For 



Questions? 

Olga Trujilo – otrujillo@caminarlatino.org 
Kelly Israel -kisrael@autisticadvocacy.org 



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