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Abstract

It is estimated that 25% of adults in the US are living with one or more disabilities. Persons with disabilities (PWD) have unmet health care needs, experience health disparities compared to those without disabilities. Barriers to quality health care include structural barriers such as access to transportation, physical access to facilities, and lack of accessible medical equipment. Other barriers include the knowledge, skills, beliefs, and attitudes of health care providers to meet the needs of PWD. To examine the barriers to health care experienced by adults with disabilities in Connecticut, the University of Connecticut Center for Excellence in Developmental Disabilities and Leadership Education in Neurodevelopmental and related Disabilities program (UConn UCEDD; UConn LEND) worked with self-advocates to develop a 25-question online survey in plain language. Data from 78 PWD and/or family members and caregivers of a PWD living in Connecticut were analyzed. Respondents reported experiencing issues scheduling appointments due to lack of availability, challenges with the scheduling system, or transportation difficulties (21%), using devices for telehealth visits (27%), and insurance coverage and cost (17%). More than half of respondents reported needing accessible buildings and exam rooms as well as accessible medical diagnostic equipment (MDE). Finally, 43% of respondents reported problems communicating with health care providers, 39% reported that providers demonstrated negative attitudes towards them during visits, and 61% reported that they did not think their health care providers had enough training about working with PWD. The results of this survey suggest that PWD living in Connecticut experience similar barriers to health care access as PWD across the country. Our findings support the need for federal enforcement of standards for accessible MDE, state-level compliance of the standards, and required training in disability competency for all health care training programs to ensure that providers can meet the needs of PWD.

Plain Language Summary

Persons with disabilities are not as healthy as people without disabilities. There are reasons for this such as not being able to get to places that provide health care like offices and clinics. These places may have physical barriers to get into the offices or clinics, or they may not have the right equipment for a person with disability. Health care providers may not be trained about the needs of persons with disabilities. The University of Connecticut (UConn) Center for Excellence in Developmental Disabilities (UCEDD) and Leadership Education in Neurodevelopmental and related Disabilities Program (UConn LEND) worked with self-advocates to ask adults with disabilities in CT about their medical care. The survey had 25 questions, was on the computer to fill out, and had a reading level of grade 5. The survey link was emailed out from the UConn UCEDD mailing list and people were told they could share the email with others. The survey was filled out by a person with a disability, or a family member or direct care support staff to a person with a disability. A total of 78 people did the survey. Most people had a physical disability. Over half of the people who did the survey said they needed an exam table that moves up and down, an office with no stairs to climb, and an office that can fit a wheelchair for them to have a successful health care visit. Others who filled out the survey said they have problems getting their provider to understand them, or they did not understand their provider. In CT and the rest of the country, there are many things that need to happen to have persons with disabilities get the health care they need and deserve.

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

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