By Priya Dharampuriya, Global Health Contributor

People with IDDs (intellectual and developmental disabilities) continue to be essentially invisible to the healthcare community, suffering from unique healthcare disparities which have been especially brought to light in the era of COVID-19. However, there are some individuals who have been fighting for the rights of this group for many years. Today’s woman dreamer is Dr. Susan Abend, an internist and endocrinologist who has made it her mission to fix the healthcare disparities for this group, both in clinical practice and through her nonprofit organization, The Right Care Now Project. In this enlightening and powerful conversation with our global Health contributor, Priya Dharampuriya, they discuss her journey with Right Care Now, and how other women can get involved in this crucial initiative. Join us for another Women’s Health Wednesday! 

1. We'd love to learn a bit about you. What led you to become a physician? Did you always know you wanted to work with people with intellectual disabilities?

 I was very young when I committed to becoming a physician, and it happened almost accidentally.  My parents encouraged me to apply to 6-year medical programs which were popular in the 80s. These were programs that automatically enrolled you in medical school after completing a compressed college curriculum the two years before.  I was curious about medicine, so I applied and was accepted in my senior year of high school, at the ripe old age of 17.  It was sort of an offer I couldn’t refuse, but it was terribly challenging to follow through on the commitment to medicine so early in life because I felt that it forced an identity on me.  This is why it’s always been very important for me to see healthcare through my own lens, rather than blindly accept the status quo.

​I had minimal exposure to persons with intellectual and developmental disabilities (IDD) until I began providing medical care to a psychiatric inpatient unit for people with IDD and acute behavioral problems.  I was shocked to find that 85% of the patients had an undetected and untreated medical problem, and when I treated that problem, their behavioral issues improved.  Most of these patients were treated with multiple psychiatric medications, yet their outpatient team never detected the physical problems that caused their challenging behaviors.  I was dismayed to see that this vulnerable population was receiving such poor care, and I was determined to find out how to fix a system that had failed them.

2. What are some healthcare disparities you've noticed with this population? Has it gotten any better since you started practicing?

In my own practice, I’ve cared for people with IDD who had undiagnosed heart failure, epilepsy, severe thyroid disease, and many other health issues that are rarely missed in modern medical practice. In the typical population, issues like hormone deficiencies, heart failure and constipation are detected and managed well before they progress to a crisis.

When I reviewed the literature, it became clear that my experience was not unique. Healthcare disparities for persons with IDD has been recognized as a worldwide problem for over 20 years.  Persons with IDD live 20 fewer years than the neurotypical individuals, and between 35 and 40% of their deaths have preventable causes.  Persons with IDD are twice as likely to have unmet health needs, have among the lowest rates of receiving preventative care services, and are 7 times more likely to suffer sexual abuse. Furthermore, adults with IDD suffer higher rates of obesity, dyslipidemia, diabetes, and osteoporosis than the neurotypical population. Recently, it’s been observed that IDD is the third highest risk factor for death from COVID.  Yet despite descriptions of these issues in the scientific literature, persons, with IDD continue to be essentially invisible to the healthcare community.

3. What advice would you give to healthcare providers treating this population?

It’s very challenging to provide care for persons with IDD.   They often present with chronic and complex health issues, many of them misdiagnoses, and there is a minimal evidence base for proper management. In multiple surveys, over 90% of providers noted that they did not have the skill or knowledge base to properly care for people with IDD.  Furthermore, because of communication disabilities and difficulty accessing a knowledgeable advocate, it’s very hard to get the information necessary for proper diagnosis.

The best approach is to try and get as much information as possible before the visit, particularly evidence of changes in health and behavior and when they were first noticed.   Also, it’s very important to perform a thorough physical examination.  This can be challenging, because so many patients with IDD can be resistant to exams, often because they have experienced trauma and sexual abuse in their past.   It’s important to proceed using principles of trauma-informed care, and when possible, desensitization techniques for exams and procedures.

4. Can you tell me about the Right Care Now Project and how it helps these patients?

Care will never improve until the right information gets to the right caregivers at the right time. We created a nonprofit organization, The Right Care Now Project, to fix the information failures that have led to these health disparities, and to make sure that everyone involved in the care of a person with IDD- family, personal caregivers, case managers, healthcare providers- has the information and guidance they need to recognize a problem and prevent health crises.

We are working with experts in medical and behavioral healthcare, healthcare delivery, implementation science, and community-based care to create user-friendly information technologies that “connect the dots” and facilitate high-quality care. 

5. How can other women inspired by this get involved?

We are always excited to work with those who would like to collaborate on this project.  However, if that’s not possible there are other ways to help.  As a charitable organization, we are dependent on public financial support of our mission.  Financial support helps us bring together the most passionate, creative experts to help us brainstorm solutions. It also helps us develop and test the ideas that come from this unique group.  Anyone who would be interested in helping us raise funds, either by spreading the word through social media, holding a Facebook fundraiser, or any other method would be providing a tremendous service and would be a great partner in helping us end the unnecessary suffering of persons with IDD.

Thank you Susan and Priya for this inspiring story! We are excited to have you both in our empowered women’s network!

Bio: Dr. Susan Abend is the founder of The Right Care Now Project, a nonprofit organization focused on transforming care delivery for individuals with intellectual and developmental disabilities (IDD). The Right Care Now Project ‘s goal is to make sure that everyone with IDD has access to expert care, wherever they live, and that no one experiences unnecessary suffering from ineffective and inexpert care. She is the Chief Executive Officer of Advasys, Inc., a company that develops information technology that alerts and guides all caregivers to respond to an individual’s health and safety needs. Dr. Abend is a board-certified Internist and Endocrinologist, with over 20 years of experience caring for persons with IDD. While on the faculty of the University of Massachusetts Medical School she developed the medical services for the UMass Neurodevelopmental Unit, the UMass Neurodevelopmental Ambulatory Team. Shehas also served in multiple roles executing and guiding healthcare quality initiatives as Medical Director of Medistaff, Inc.in Worcester, MA, Vice President of Quality and Medical Affairs for Johnson Memorial Health System in Stafford Springs, CT, and as the Executive Director of the Healthcare Quality Management Group, in Framingham, MA.

Bio: Global Health Contributor Priya Dharampuriya is a third-year medical student at Lincoln Memorial University, with a degree in Biology from Tufts University and a Masters in Medical Sciences from Boston University. She is interested in healthcare disparities, health communication, environmental issues, and interesting stories. Priya is very excited to join Women Who Win as a Global Health Contributor and use this amazing platform to foster important conversations about health!