Health
Access to quality healthcare is paramount to one’s sense of well-being and security – especially when living with developmental disabilities. Having a developmental disability can also make issues around healthcare more complicated – from assumptions on the part of health professionals, financial insecurity, and complicated systems to care, to issues around communication and autonomy.
At the Maine Developmental Disabilities Council, we believe that everyone has a right to good healthcare that respects the dignity of the patient, understands how pain may be expressed in different ways, and accommodates all bodies and minds. Our work continues to push the healthcare system to recognize the particular needs of our community and to find ways to meet those needs with respect.
Here are a few of our recent efforts in healthcare:
Developmental Disabilities Health Project
This multi-year project focused on the points at which interactions between people with developmental disabilities and their healthcare providers break down. These points of failure often revolve around communication difficulties on the part of the person with DD, and on preconceptions held by healthcare professionals.
MDDC investigated several possible avenues of system change in order to smooth these points of disconnection. This project was led by an RN who developed materials and presentations for healthcare providers around working with the DD community, with a particular focus on understanding how pain can impact behaviors, as well as how to mitigate pain in someone with developmental disabilities. We also developed guides to working with DD patients suffering from dementia.
Alongside these materials, MDDC also partnered with the University of New England to produce a set of videos for students and medical professionals, to help them better understand people’s experiences with accessing healthcare and how practitioners can work to build trust in that relationship.
To find the written DD Health materials, Practitioners click here, and to Watch the videos, click here.
Project Connect
Project CONNECT aspires to create a research community of praxis where critical reflections and courageous conversations are encouraged and where all participants can equitably engage in I/DD research related to clinical care delivery, coordination, and access through the lens of the provider, parent/caregiver, and patient triad. Project CONNECT is designed around four interconnected strategies.
