S AFEGUARDS , U NPRECEDENTED T IMES , AND A DVOCACY P ART 2 Leslie Lipson, J.D. Katie Chandler, LCSW May 22, 2020
SAFEGUARDS “It is important to recognize that there does not exist a package of safeguards of any kind that could bestow onto vulnerable people an assured sense of security and relative invulnerability. All safeguarding strategies are, by definition, only superior to the extent that they exceed the merits of an alternative formulation of safeguards. Thus all such strategies are limited, prone to their own unanticipated dysfunctionalities, and consequently always of a relative rather than ultimate degree of quality. This shortcoming should not at all detract from their very real potential potency and effectiveness, notwithstanding whatever limitations they have. With vulnerable people, particularly those who may be unwanted, socially devalued and otherwise outcast or even abandoned, we do not have the luxury of such a degree of perfectionism about safeguards that we do nothing until we can do everything. Social realism requires that we do our best with what we have while there is still time. “ Intentional Safeguards For Older People - Michael J. Kendrick PhD
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Dangerous Assumptions that are (even more-so) Problematic People with disabilities are seen as… • A burden on families, service providers, healthcare system and society in general • Hazardous to work with • Not competent to make decisions and in need of being protected • Belonging in group homes and facilities • Preferring to be mostly with other people with disabilities • Unemployable, incapable • Undeserving of medical treatment • Lacking quality of life or not having lives worth living
Impact Intent What NOT Why
Dangerous Vulnerabilities Assumptions • Surrounded mostly or solely by paid • A burden on families, service supporters providers, healthcare system and society in general • Pitied, Mistreated • Hazardous to work with • Contagious, menace to society • Not competent to make decisions • Are uninformed and familiar with others and in need of being protected having control over their autonomy and freedom • Belonging in group homes and facilities • Are segregated and congregated • Preferring to be mostly with other • Are at more risk living in group homes people with disabilities and facilities • Unemployable, incapable • Isolated, lack relationships and are lonely • Undeserving of medical treatment • Aren’t contributing or enhancing their competencies • Lacking quality of life or not having lives worth living • Denied medical treatment • Seen as better o ff dead
Some Vulnerabilities Magni f ied in the Time of COVID - 10 • Are uninformed and familiar with others having control over their autonomy and freedom • Isolated & lonely • Aren’t contributing or enhancing their competencies • Denied medical treatment • Unaccompanied in the hospital • Seen as better o ff dead
Possible Advocacy Strategies Vulnerabilities Safeguards Remedies 8
De f inition of Safeguards Intentional safeguards can be thought of as conscious design or practice features that can variably be added on, built in or strengthened in order to preserve or enhance something of value in a situation and thereby better manage the vulnerabilities of people and situations.” - Michael Kendrick
Strategies, Safeguards, Remedies Vulnerability ? People are uninformed & SHARE CLEAR familiar with others having INFORMATION & SUPPORT control over autonomy and PEOPLE TO UNDERSTAND freedom CURRENT SCENARIOS 10
Why your doctor looks di ff erent during Covid-19 Click here for video
Strategies, Safeguards, Remedies Vulnerability ? • BE INFORMED ABOUT People are denied HEALTHCARE SYSTEM medical treatment & seen • KNOW RIGHTS AND as better o ff dead STRATEGIES FOR INCREASING IDENTIFICATION 14
Healthcare system in ordinary times in the US: • Based on the Medical Model • Isn’t exact science • Is run by humans and humans make errors • Inequities present in provision of healthcare: ableism, racism, ageism, homophobia • Has many players - hard to know who is in charge, how to navigate the system • Is a massive bureaucracy • Is full of barriers with people accessing care and appropriate treatment • Is expensive • Consists of many people who are uninsured • Has tension between patients, stakeholders, industry and best practices • Can be dangerous
The most important protective measure (for people in hospitals) is mindset. Be proactive, be intentional, be protective, be intense. -Tom Kohler
Preparing Individuals with Intellectual/ Developmental Disabilities for Medical Treatment at Hospitals Dr. Michelle Ballan, faculty member at the State University of New York (SUNY) at Stony Brook, developed a COVID-19 form in concert with emergency room physicians and adults with disabilities and their families. They created a website and tailored a form for each state. You can access the website here.
The O ffi ce of Civil Rights that “persons with disabilities should not be denied medical care based on stereotypes, assessments of the quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities.”
There are many different reasons you should personally protect your friends and loved ones in the hospital today. You may not be a professional or an expert, but you are there for just one person and for just one reason. Common sense and concern go a long way towards helping in almost any situation. Protecting People While They Are In the Hospital - Tom Kohler
A big barrier facing patients with disabilities during the COVID-19 pandemic is strict no- visitor policies that hospitals and other health care facilities across the country have enacted to contain the spread of the virus. These policies frequently discriminate against people with disabilities who require support from family members or staff to effectively communicate with medical personnel or to otherwise receive equal access to treatment. This guidance document lays out the legal framework for required reasonable modifications to state and hospital no- visitor policies and identifies a number of criteria that stakeholders can use to evaluate such policies in order to ensure that they comply with federal disability rights laws.
Some of the traits and skills a PROTECTOR would want to have: • Courage and fortitude • Stick-to-it-ness • Knowledge of the person • Diplomacy • Courtesy • Sense of humor • Practical knowledge of medical care and personal care • A habit of quiet skepticism mixed with an honest willingness and ability to step up and step forward on behalf of a person. -Tom Kohler
People with disabilities are often seen in negative, stereotypical ways, such as burdens, objects of pity, and eternal children, among others. The emotional energy in other people in response to the person is often negative energy. One way that advocates can offer protection is to become your loved one’s “public relations” person at the hospital. Help the staff understand who the person really is, tell stories that show the person’s commonalities with other people, tell stories about the good times, and broaden the staff’s view of the person. - Tom Kohler
https://bit.ly/TASHFeedbackMay20
Katie Chandler, LCSW Leslie Lipson, JD Katie is a Licensed Clinical Social Leslie is an attorney, a member of Worker who works with Sangha TASH, and a self-described Unity Network as a Project inclusionista. She has been deeply Consultant. She is a member of involved in advocacy for and with TASH and previously directed the people with disabilities over the Developmental Disability Program at past 20 years, spending the the Georgia Advocacy Office, majority of her career at the Georgia’s Protection and Advocacy Georgia Advocacy Office. Leslie Agency. Katie uses the principles founded Lipson Advocacy: learned from Social Role Valorization Education, Legal and Strategy to support people with disabilities to Specialist, where she offers have full, meaningful, inclusive lives advocacy solutions from a values- and to teach and mentor human based foundation using general and service professionals. special education law. katiechandler.sun@gmail.com Leslie@lipsonadvocacy.com IMPORTANT NOTICE: This presentation is not legal advice or medical advice. Information has been sourced by the presenters and is for general information purposes only. This is a changing situation. Laws di ff er by state and location. This information may not be up to date. It’s up to you to be sure the information is correct and applicable to you.
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