S AFEGUARDS , U NPRECEDENTED T IMES , AND A DVOCACY P ART 2 Leslie - - PowerPoint PPT Presentation

SAFEGUARDS, UNPRECEDENTED TIMES,

AND ADVOCACY

PART 2

Katie Chandler, LCSW Leslie Lipson, J.D.

May 22, 2020

“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

• utcast 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

SAFEGUARDS

3

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 Why NOT

• 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

• Surrounded mostly or solely by paid

supporters

• Pitied, Mistreated
• Contagious, menace to society
• Are uninformed and familiar with others

having control over their autonomy and freedom

• Are segregated and congregated
• Are at more risk living in group homes

and facilities

• Isolated, lack relationships and are lonely
• Aren’t contributing or enhancing their

competencies

• Denied medical treatment
• Seen as better off dead

Dangerous Assumptions Vulnerabilities

• 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 off dead

Some Vulnerabilities Magnified

in the Time of COVID-10

8

Possible Advocacy Strategies Safeguards Remedies

Vulnerabilities

Definition of Safeguards

Intentional safeguards can be thought of as conscious design or practice features that can variably be added

• n, 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

People are uninformed & familiar with others having control over autonomy and freedom

10

Strategies, Safeguards, Remedies

Vulnerability?

SHARE CLEAR INFORMATION & SUPPORT PEOPLE TO UNDERSTAND CURRENT SCENARIOS

Click here for video

Why your doctor looks different during Covid-19

People are denied medical treatment & seen as better off dead

14

Vulnerability?

• BE INFORMED ABOUT

HEALTHCARE SYSTEM

• KNOW RIGHTS AND

STRATEGIES FOR INCREASING IDENTIFICATION

Strategies, Safeguards, Remedies

Healthcare system in

• rdinary 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 Office 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

• r 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,

• bjects of pity, and eternal children, among
• thers. 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 Katie is a Licensed Clinical Social Worker who works with Sangha Unity Network as a Project

• Consultant. She is a member of

TASH and previously directed the Developmental Disability Program at the Georgia Advocacy Office, Georgia’s Protection and Advocacy

• Agency. Katie uses the principles

learned from Social Role Valorization to support people with disabilities to have full, meaningful, inclusive lives and to teach and mentor human service professionals. Leslie Lipson, JD Leslie is an attorney, a member of TASH, and a self-described

• inclusionista. She has been deeply

involved in advocacy for and with people with disabilities over the past 20 years, spending the majority of her career at the Georgia Advocacy Office. Leslie founded Lipson Advocacy: Education, Legal and Strategy Specialist, where she offers advocacy solutions from a values- based foundation using general and 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 differ 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.