10 minute read
Happenings
AUTISTIC SELF ADVOCACY NETWORK Mourning the Loss of Lois Curtis
Lois Curtis was one of two people who sued for their rights in an important disability rights case called Olmstead v. L.C. She recently died at age 55.
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As a child, Lois Curtis was put in an institution. Later in her life, she remembered that she used to pray at night to get out of the institution. As a young adult, Lois started calling an organization called Atlanta Legal Aid. She asked Atlanta Legal Aid to help her get out of the institution and move into the community. Atlanta Legal Aid decided to work with Lois. They helped her and another woman, Elaine Wilson, sue for their rights. The case went all the way to the Supreme Court. In 1999, the Supreme Court decided that the Americans with Disabilities Act gave disabled people the right to receive services in the community, not just in an institution.
After getting out of the institution, Lois eventually moved to her own home in Atlanta. Her community loved her, and she made beautiful art. Lois used a kind of supported decision-making called a “microboard.” This was a small group of people who had regular meetings to talk about Lois’ life. They helped make sure she had what she needed and achieved her goals. Lois’ microboard helped her get a self-directed services waiver from Medicaid. They also helped her show her artwork in galleries. In 2011, Lois visited the White House for a celebration of the anniversary of Olmstead.
In 2015, a friend asked Lois, “What do you wish for all the people you’ve helped move out of the institution to live in their communities?” Lois answered: “I hope they live long lives and have their own place. I hope they make money. I hope they learn every day. I hope they meet new people, celebrate their birthdays, write letters, clean up, go to friends’ houses and drink coffee. I hope they have a good breakfast every day, call people on the phone, feel safe.” Because of Lois, people with disabilities have the right to receive services in the community. The Olmstead decision has led the government to make more opportunities for people with disabilities to get services outside of insti-
“tutions. Advocates and the government use the Olmstead
Because of Lois, people decision to fight for disabled students’ rights to learn in the with disabilities have the same classroom as non-disright to receive services in abled students. Advocates and the government use Olmstead the community. to fight for disabled workers’ rights to work in the same workplace as non-disabled workers, and earn a competitive wage. Autistic Self Advocacy Network (ASAN) remembers Lois Curtis’ amazing life, and honors her in their work by: • Working to make sure that everyone has the rights that the Olmstead decision promises them. • Making sure that more people can use supported decision-making and alternatives to guardianship. • Following the leadership of Black disabled advocates and advocates with intellectual disabilities. Lois Curtis was given no option but to live in an institution, but she refused to accept that and created a different path to follow - for herself and for many other people with disabilities. Rest in Power, Lois Curtis.
Photo courtesy of Robin Rayne/ZUMA
Family-to-Family
HEALTH INFORMATION CENTERS
(From Military OneSource)
Family-to-Family Health Information Centers are nonprofit organizations familiar with the issues facing families with special needs. In addition to the services for military families that are available here at Military OneSource or at your local family support center, Family-to-Family Health Information Centers can connect you to resources that can provide and finance health care for your children, help locate assistance, and explain legislation. Each center has staff — many are parents of children with special needs — who understand available services and programs.
Find answers through Family-to-Family Health Information Centers
Your local Family-to-Family center can help you find answers to a variety of health care issues. Along with other services, center staff can help you: • Learn eligibility requirements for Medicaid • Find answers to questions about Social Security and Supplemental Security Income • Write a health care plan for teachers and therapists • Locate resources to pay for medications • Find support groups • Understand Title V and other programs that can help your family member • Transition between insurance plans
Tap into useful resources
Get the help you need from your Family-to-Family center through: • Support and referrals by telephone, email or in-person contact • Training workshops • Helpful websites • Newsletters and other publications • Guidance on health programs and policy • Evaluation and outcome assessments
Family-to-Family Health Information Centers can help you navigate the waters of health care and find the personalized tools you need for your family. Learn more about Family-to-Family Information Centers and find a link to locate the one in your state at familyvoices.org. For more information on resources for finding access to medical services for families with special needs, read the Exceptional Family Member Program fact sheet on Medicaid and Medicare (https://www.militaryonesource.mil/ products/public-benefits-resources-medicaid-and-medicare-fact-sheet-962/).
www.medicaiddental.org
Let’s Talk
About Communication
By Samantha DiSalvo
These were all said to me throughout my clinical rotations when I asked to follow different patients who had an intellectual and/or developmental disability (I/DD). These statements sound harsh when written alone, but I do not believe that these words were ill intentioned. Rather, I believe the problem lies in the system. The system in which medical schools are not required to teach future physicians how best to care for individuals with disabilities; and this often leaves health care professionals hesitant when providing care. In my eyes, these patients were the perfect learning opportunity and yet, I was being discouraged from it. Why was that their gut reaction?
In medical school, we have specific courses dedicated to learning how to communicate with our patients. We learn the right questions to ask to obtain a thorough history. We learn that if a patient has pain, you should go through the “OPQRST” questions to further evaluate it. When was the Onset? What Provokes or Palliates it? What is the Quality of the pain? And so on. But what do we do when our patients do not communicate directly with words? You cannot bring in a translator to help you in these situations. Rather, the physicians themselves must know that there is more to communication than just speaking words. There are communication boards or devices, facial expressions, gestures, and so much more to help you obtain a thorough history. This is not covered in my medical school curriculum, nor most other medical schools around the country. It is this lack of education, lack of knowledge, and ultimately, the lack of comfort that leads to those statements you read at the beginning of this article.
And it is those same phrases that were the motivation behind one of our recent Einstein American Academy of Developmental Medicine and Dentistry (AADMD) Student Chapter webinars where we focused on improving communication skills amongst future physicians and individuals with I/DD. This was a very special event for me because I was able to bring in two experts on the topic who also happen to be family—my brother Anthony, who has cerebral palsy, and my mom, who is his primary caregiver and retired physical education teacher for children with disabilities.
A New Kind of Family Project
My brother and I have worked on countless projects together, from the annual Christmas raffle to selling Superbowl boxes, but this past September we added this new project, creating a presentation to teach my fellow medical students. In preparation for this event, we met with Dr. Seth Keller, a board-certified neurologist with years of experience caring for and advocating alongside individuals with I/DD, to help bring this presentation to fruition. Together we brainstormed the main objectives of our presentation, using Anthony’s perspective as a patient, my
mother’s perspective as a caregiver, Dr. Keller’s perspective as a physician, and mine as a medical student currently in training. Ultimately, our goal of the presentation was to: 1. Identify the different modes of communication used by individuals with I/DD 2.Discuss diagnostic overshadowing and other bias’ individuals with I/DD often face in the healthcare setting 3.Show ways of implementing the communication strategies discussed in the presentation within the clinical setting
From the very first planning meeting we had, my brother was filled with excitement and extremely motivated to share his story with my classmates. He Facetimed me almost every night to discuss details of the presentation and finalize the major points that he wanted to get across. Anthony, being the computer-wiz that he is, worked to create PowerPoint slides to introduce himself at the beginning of the presentation, recording his programmed screen-reader to read each of the slides out loud. This would not only allow Anthony to introduce himself to the group, but would also highlight the use of communication devices as a form of communication for some individuals.
My mom, my brother, and I continued to meet to discuss the details, and with each meeting, we were able to uncover more and more physician encounters that really highlighted the importance of communication, both the good and the bad. We sifted through countless physician encounters they have had through the years and identified which ones they liked more and then took it a step further to question why those encounters were more positive for Anthony and my mom.
Ultimately, it came down to communication. Physicians who spoke directly to Anthony and did not assume that he does not understand were often ones that provided better care in their eyes. Physicians who asked Anthony about his life outside of the chief complaint that brought him to the doctor formed a stronger physician-patient relationship with Anthony. Physicians who explained why they were ordering a certain test or what a certain result meant gave Anthony more control and knowledge in his healthcare.
Ultimately, with the help of Dr. Keller, we were able to create a presentation that highlighted all of Anthony and my mom’s experiences within the health care system, with a focus on what future physicians can do better. We incorporated a case presentation and mock interview between Anthony and Dr. Keller to demonstrate key communication strategies in real-time and really allow Anthony to share his perspective of navigating the health care system as an adult with cerebral palsy and intellectual disability.
The statements that I heard on my clinical rotations are unacceptable and there needs to be a change. At Albert Einstein College of Medicine, we are working to change this. Our school is fortunate enough to be members of the Rose F. Kennedy University Centers for Excellence in Developmental Disabilities (UCEDD) which has allowed passionate faculty, such as Dr. Vincent Siasoco and Joanne Siegel, to instill educational lectures and panel presentations into the required medical school curriculum. But there is still more that needs to be done.
During the past two years, the formation of the Einstein student chapter of the AADMD has allowed us to provide extracurricular opportunities for medical students to learn more about treating this underserved population as well as participate in volunteer events to get to know these patients outside of the clinic setting. But there is still more that needs to be done. I hope that this lecture made a small change in how some of my classmates
treat individuals with disabilities, but one lecture is not enough. There needs to be a system-wide change, allowing all physicians-in-training access to the education necessary to provide quality care for patients with I/DD.
Sam DiSalvo is an M.D. Candidate, Class of 2023, Albert Einstein College of Medicine. She is a member of Einstein’s American Academy of Developmental Medicine and Dentistry (AADMD) Student Chapter.
