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 Thank you! Thank you for attending our End Abuse webinar. Please complete a brief survey sharing your feedback about the webinar. https://www.surveymonkey.com/r/TNDGPVR