Even in a Big Wide World, the Issues Remain Consistent

In June, I had the remarkable opportunity to experience the 16th Conference of States Parties to the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), which was adopted in December 2006.

The Conference of States Parties is an annual event that brings together people with disabilities and disability-related interests from around the globe. Each session is hosted by a UN member nation, and panels are developed to address disability rights issues, services, health equity, access, accessibility, and other topics affecting people with disabilities.

A session I found particularly interesting was titled “Ensuring Accessibility and Inclusion for Persons with Disabilities in Health and Support Services: Italy’s DAMA (Disabled Advanced Medical Assistance) and Other Good Practices from Stakeholders.” This session was hosted by the Permanent Missions of Italy, Austria, the European Disability Forum, and Inclusion International.

Professor Filippo Ghelma, Researcher at the Department of Health Sciences, University of Milan, shared his work in developing a specialty clinic model aimed at providing necessary medical care for people with complex needs. He illustrated the creation of these clinics across Italy to minimize unnecessary and unwanted emergency department utilization and hospitalization.

While some might suggest that these clinics are segregating people with special health care needs, Dr. Ghelma argues that their co-location in area hospitals ensures better access to sensory-friendly environments with health care professionals trained in ways to best support an individual’s particular needs. His research also demonstrated that access to these clinics reduced the occurrence of emergency hospitalizations and improved health outcomes overall. 

Mr. Konrad Swietek, from the Austrian Ministry for Social Affairs, Health, Care and Consumer Protection, spoke about his country’s work to modernize the health care sector and their ongoing work to develop an inclusive health plan for Austria.

Shifting a little closer to home, ANCOR member and CEO for Keystone Human Services in Pennsylvania, Chuck Sweeder, shared the Keystone experience to improve access to health care delivered by disability-competent physicians and others. At Keystone’s Adult Community Autism Program (ACAP), the organization serves, in part, as a Managed Care Organization (MCO) responsible for the health care of people served and for creating a network of disability-competent physicians. To this end, Keystone has created an online training program for its physicians called Spectrum.

The goal is to train doctors and their staff on how best to support people with disabilities in a health care setting. Keystone also works to prepare its own staff to be allies and advocates by using “Listen. Include. Respect.” guidelines created by Inclusion International and Down Syndrome International. While much of the work done by ACAP goes beyond the typical scope of a service provider, Chuck quoted the international speaker, consultant, strategist, and 2023 ANCOR Annual Conference keynoter Alonzo Kelly, saying “It’s the start that stops most people.” 

Finally, Ms. Dominique Kantor, a self-described self-advocate from Argentina working with Inclusion International, shared information on the development of “Listen. Include. Respect.” In a poignant address, Ms. Kantor spoke about the difficulty in advocating for oneself when so much information is presented in a manner that is not easy to understand. This, she said, results in other people making decisions for you. She explained how “Listen. Include. Respect.” outlines ways to best communicate for understanding and successful inclusion.

So, while each presenter had a slightly different focus, it was evident to me that across the globe, we are all grappling with how best to break down barriers while building up resources and pathways to improve access to and equity in better health care for all.

Donna Martin is the Senior Director of State Partnerships & Innovation at ANCOR.