Institute on Disabilities Newsletter - Summer 2020

From Temple University Institute on Disabilities.

NEWSLETTER

The Institute on Disabilities
at Temple University

Issue 1
Summer 2020

Hello…and Welcome!

Welcome to the first quarterly newsletter for the Institute on Disabilities at Temple University, College of Education. Our goal is to keep our friends and colleagues up to date with what is happening at the Institute and pass on any important information for and about people with disabilities, their families and those who support them.

We hope that you enjoy the newsletter.

Sign up to join our contact list and let us know what you’d like to read about in future. Click on this link to our form.

Institute Adapts During COVID-19

Continuing and Improving its Work for and with People with Disabilities

Beginning on March 17, 2020 the Institute began to conduct all work remotely, in accordance with the guidelines set forth by the Commonwealth of Pennsylvania. Our existing programs adapted, and in response to needs, we introduced new programs and provided important resources.

Here are some highlights:

  • The Institute created and maintained a list of resources focusing on sites for guidance, information, assistance and personal well-being.
  • TechOWL - Technology for Our Whole Lives, the Assistive Technology program of the Institute, launched a new program called Connect With Tech which collects used devices such as iPads, tablets and smart phones, and ships to Pennsylvanians with disabilities who use them for communication, especially during quarantine. Read more about Connect With Tech.
  • 7th Annual Disability and Change Symposium – Combating Implicit Bias: Employment This annual event is a one-day, interdisciplinary conference focusing on cultural equity and disability. Originally scheduled as an in-person event for March, we had to re-envision and transform it into an online mini-course, available at any time. To date, more than 5000 people have accessed the course modules. Read more on the Disability and Change Symposium webpage.

A complete story about how the Institute responded to the COVID-19 crisis is available on the news section of our website: Institute Adapts during COVID-19

Institute Names Interim Executive Director

On March 7, 2020, Sally Gould-Taylor, PhD began her tenure as Interim Executive Director of the Institute on Disabilities at Temple University, College of Education. Having served as both the Associate Director of the Institute and as its Director of Research and Evaluation, Dr. Gould-Taylor is uniquely qualified to guide the Institute into a new era.
 
During the transition, Sally is working closely with the Dean and Deputy Dean of the College of Education on all decisions concerning the Institute's operations and is leading the Institute through this important change.
Sally holds a PhD in Urban Education with a focus on Anthropology of Education. Her work builds from community driven Participatory Action Research in diverse fields of human services, disability and education. Additionally, she has taught at Temple University for ten years.
"I am looking forward to working with the Institute's dedicated staff, and our University and community partners, to sustain the extraordinary work we have accomplished over the past four decades," Sally said. "We will continue to build on our shared vision where ALL people are respected and lead self-determined lives."

Sally’s predecessor, Celia S. Feinstein, announced in September 2019 that she would be stepping down as Executive Director, but remaining at the Institute to manage several key projects. (Read Celia’s announcement)

Policy Spotlight

Hospital “no visitor” policies cannot discriminate against people with disabilities

Pennsylvania policy  

On April 27, 2020, the Pennsylvania Secretary of Health, issued a revised, statewide hospital visitor policy. As a member of the PA Coalition for Inclusive Community, the Institute on Disabilities at Temple University, joined other Pennsylvania disability organizations to raise concerns about this policy because:

  • A person with an intellectual disability or significant communication need has a right to participate in decision making and communication about their care. This right must not be restricted simply because a person needs assistance from a support professional or family member, and;
  • Individuals and families needing care should not have to “hospital shop” in order to find a Pennsylvania hospital that will grant access to a support person in these situations. 

The April 27 policy left the decision as to whether a support person will be allowed to the discretion of the medical staff. Pennsylvanians with disabilities and families argued this remained inadequate for several reasons:

  • The right to cognitive, communication or other support because of a disability is protected by various anti-discrimination laws including the Americans with Disabilities Act and, in many cases, the Rehabilitation Act of 1973. Under these statutes, access to support is a reasonable accommodation;
  • In most instances, the medical staff charged with deciding if a support person is necessary in the hospital have no previous experience with the person and the impact of their disability.
  • Medical staff may lack any experience with disability at all.

On May 23, 2020, the PA statewide visitor policy was revised to include a statement to ensure compliance with state and federal laws including the Americans with Disabilities Act. As a result, Pennsylvanians with disabilities may bring a support person into the hospital if needed. 

What is the current policy in Pennsylvania?

Read about the current policy on this PA Department of Health webpage: Guidance on Hospitals' Responses To COVID-19

Federal policy

On June 9, 2020, the Federal Office of Civil Rights (OCR) at the U.S Department of Health and Human Services announced a resolution on hospital visitor policies. This Resolution was a response to a federal complaint filed by the Center for Public Representation alleging that strict “no visitor” policies discriminate against people with disabilities in violation of the Americans with Disabilities Act (ADA).

What are some key points of the Resolution?

  • People with disabilities must be allowed a support professional or family member to accompany them in the hospital as a reasonable accommodation.
  • Hospitals must take steps to mitigate the risk of COVID-19 transmission to support professionals or family support who need to enter the hospital with a person with a disability to ensure equal access to healthcare and/or effective communication. 

Where can I learn more?

You can read the full text of the press release and Resolution here: Federal Civil Rights Resolution Makes Clear Hospital Visitor Policies Nationwide Must Accommodate Patients with Disabilities During COVID-19 Pandemic
 

New Initiatives:
Communicating and Collecting

COVID-19 Vocabulary Board 

Early on during the quarantine, the TechOWL team created a core vocabulary board with icons added in response to the COVID-19 crisis. Vocabulary boards are generally used by people who are unable to communicate in a traditional manner. The board can be used to communicate health issues, food needs, fears and wants. It is available for download online, and a limited number of printed and laminated ones are available. Learn more: COVID-19 vocabulary board.

Story Collecting and Disseminating

Collecting and disseminating stories of people with disabilities and their families is always important, but during the COVID-19 crisis, it is essential. We need to understand the impact that this crisis has on people with disabilities to how to best manage through future events.

  • The Institute's Media Arts & Culture (MAC) program was awarded a short-term grant by the Independence Public Media Foundation to collect stories about living with disability in the midst of the COVID-19 crisis. The Institute will assemble a cohort of community partners who can elicit stories from people who represent the intersectionality of the disability community. The stories will live on the Institute's website and excerpts will be shared on social media. Independence Public Media will also share the stories with media outlets across the region in an effort to increase awareness and support advocacy efforts.
  • The Institute is partnering with Short Edition to collect stories from people with intellectual and developmental disabilities. During this time of social distancing, the strategy of the story collection had to change. Writing professionals will work with people with disabilities to compose narratives, poems and even drawings. The stories will be added to, and dispensed by, a story kiosk in center city Philadelphia. The story kiosk has been adapted to accommodate touchless interaction and will be moved throughout the city in the coming months.
  • The Institute’s Person Directed Services (PDS) project has collected stories about using PDS—how users feel about it; success stories, challenges, etc. Stories, photos and videos are on the Institute website and are actively shared on social media.  Find the stories on our website: Person Directed Services: Stories
  • Finally, the Institute created a unique social media campaign – #SaluteYourSupports â€“ that provides an opportunity for people with disabilities to recognize their support professionals who continue to be active partners even through a quarantine. These Support Service Professionals, Direct Support Professionals and Personal Care Attendants work to ensure that people with disabilities successfully accomplish the tasks of daily life.

Western Corner

The Institute’s mission extends across the Commonwealth of Pennsylvania and as such, we maintain a satellite office in Pittsburgh. As Western Coordinator, Guy Caruso, PhD, manages all activities in the region, in addition to his work with Pennsylvania's ODP Independent Monitoring for Quality Program.

In his role as an advocate and teacher, Guy has taken an active role in the ADA 30th Year Planning Group, hosted by the Pittsburgh-based FISA Foundation. This group has worked with the Pittsburgh Port Authority to facilitate the wrapping of two city buses with the ADA logo in recognition of the anniversary. In addition, Guy is a part of the Western PA Disability History and Action Consortium and will lead a panel discussion as part of the Disability Pride Virtual PA 2020, a 30-day recognition of the 30th anniversary of the ADA passing.

“Learning from Our History: Living Beyond the Wall of the Institution” will address three films, two of which Guy and the Institute played a major role in producing.

“From Wrongs to Rights,” which explores Western Pennsylvania advocacy that exposed issues in the Commonwealth’s institutions and â€śValuing Lives: Wolf Wolfensberger and the Principle of Normalization” which profiles the academic who influenced disability policy and practice through his development of normalization and social role validation.

CONTACT US
Email: IOD@temple.edu                    Tel: 215-204-1356

Institute on Disabilities at Temple University
College of Education
1755 N. 13th Street  Student Center 411S
Philadelphia, PA 19122