The Center for Dignity aims to identify and reduce life-limiting healthcare inequities for people with disabilities. We have focused our work to five main areas: Mental Health/Suicide Prevention, Organ Transplants, Aging/End of Life, Prenatal Diagnosis and COVID-19. We have a subcommittee dedicated to each topic. In an effort to better understand where these inequities lie for people with disabilities, we started our work by conducting a gap analysis. A gap analysis is a tool that is used to help investigate and create a plan to fix a problem or issue, utilizing a 4-step process in which one identifies the current state of an issue, identifies the ideal future state, finds the gaps between the two and then creates a plan to close those gaps.
For the Mental Health/Suicide Prevention Subcommittee, the gap analysis showed that within the Mental Health and Suicide Prevention field the following inequities are clear:
- The systematic exclusion of people with disabilities in psychiatric research programs and clinical trials.
- No nuanced mental health outcome measures for people with disabilities.
- Lack of training within the mental health workforce about I/DD
- Care coordination and health care access are inadequate to meet the complex lifelong health care needs of persons with pediatric-onset disabilities
- Lack of doctors competent to treat dually diagnosed individuals on either I/DD or MH needs
- Limited research on intervention for suicidal behaviors in the I/DD Population
- Lack of understanding of why people with I/DD are 2.5-4.7 times more likely to have a mental health disability than people in the general population and why it is less likely to be identified
For the Organ Transplantation Subcommittee, the gap analysis provided us with evidence that there is systemic inequality for people with disabilities in receiving an organ transplant in the following ways:
- Early policy statements promoted awareness for increased donation but didn’t discuss candidacy
- Demand for transplantable solid organs far exceeds supply
- Patient selection criteria determined by individual programs with little transparency/oversight
- Estimates of quality of life are influenced by implicit and explicit bias
For the Aging/End of Life Subcommittee, the gap analysis revealed that when it comes to aging and end of life for people with disabilities, inequities in healthcare exist with:
- Communication (multi-layered- doctor:patient, family:patient, family/patient-treatment team)
- Decision-making process is not supported or person-centered
- Complex family and social circumstances
- Cultural stigma and societal barriers related to talking about and planning for death with people with I/DD
- Unclear metrics to determine end of life
For the Prenatal Diagnosis Subcommittee, the gap analysis verified that in utero, the diagnosis of disability produces discriminatory practices, such as:
- Genetic testing and prenatal diagnosis are now routine and offered to all pregnant women, rather than just those in the high-risk category
- Potential parents are often given medicalized “worst case scenario” information when presented with a prenatal diagnosis and rarely any positive information about how people with disabilities and their families can and do thrive
For the COVID-19 Workgroup, the Gap Analysis provided us with evidence that there are inequities in healthcare vis-á-vis both the treatment of COVID-19 and the vaccination against COVID-19. Such as:
- Rationing of critical care through Crisis Standards of Care (triage protocols)
- Increased exposure/risk through institutionalized congregate care
- Lack of prioritization for people with disabilities for the administration of the vaccine.
Each of these subcommittees are working hard to close these gaps in inequitable healthcare outcomes for people with disabilities.