‘Nothing About Us Without Us’: Disability Research That Engages Those Directly Affected

Creating a world in which people with disabilities enjoy equal access, rights and opportunities is something Darcy McMaughan, PhD, is passionate about. With the motto, “Nothing about us without us,” where no research, policy or tool is created without the direct participation of those affected, she is pioneering approaches for those with disabilities.

McMaughan, an assistant professor and director of the Program on Disability Research and Community Based Care (PDRCC) at the Texas A&M School of Public Health, focuses on establishing academic-stakeholder partnerships to address disability and community-based care. The PDRCC is engaged in research, training and dissemination focusing on three areas essential to the emancipation of people from unnecessarily restrictive and segregated medical environments: independent living, community participation and social integration.

Following the World Health Organization’s lead, McMaughan and her team define disability in the broadest sense to cover physical, cognitive, psychological and emotional impairments; activity limitations and participation restrictions.

“Community-based care encompasses those long-term supports and services delivered in a non-institutional setting,” McMaughan said. “Our focus has been on advancing knowledge in the area of costs, quality and access to a wide range of community-based long-term supports and services programs.”

For example, the Texas Health and Human Services Commission (HHSC) awarded approximately $3 million to the PDRCC team, who, along with the Texas A&M Public Policy Research Institute, created the STAR Kids Screening and Assessment Instrument as part of establishing the STAR Kids Medicaid Managed Care Program. This occurred as a result of Texas Senate Bill 7, which redesigned health care for individuals with intellectual and developmental disability and directed HHSC to establish the STAR Kids program as a capitated, mandatory, managed health care program to provide Medicaid benefits to children with disabilities.

“We created a reliable assessment of care needs instrument to be used for the nearly 200,000 Texas children with disabilities on social security insurance or in a variety of Medicaid waiver programs,” McMaughan said. “Our research team worked closely with industry members, community stakeholders, advocacy groups and state policy makers in the process of assembling then field testing the intervention.”

Long-term care policy for the aging is also a focus of the PDRCC, including the development and testing of a toolkit for improving antibiotic stewardship in nursing homes across the United States. Working as a subcontractor for the American Institutes for Research on a grant funded by the federal Agency for Health Research and Quality, McMaughan’s team helped develop and test a nationwide toolkit to improve antimicrobial use in American nursing homes.

“The Nursing Home Antibiotic Stewardship project stems from our team’s previous work on antibiotic nursing homes in Texas, in which we discovered an alarming rate of inappropriate antibiotic use in Texas nursing homes,” McMaughan said. “The intervention we developed successfully reduced this rate when implemented by nursing homes.”

Recently, the PDRCC developed a close working relationship with the Houston Policy Department Mental Health Division to tackle issues related to unlicensed board and care homes in Houston, Texas. This model of community-based care, the board and care home, provides board and varying levels of care for people needing supportive services. Some of these homes are legally unlicensed, while others operate without a license illegally.

The actual living conditions, quality of care and level of safety at unlicensed board and care homes is largely unknown due to a combined paucity of regulation, oversight and research, and McMaughan’s team is currently conducting research with Houston Police Department to examine the state unlicensed board and care homes in Houston.

“Directly engaging those with disabilities will continue to be the approach we use in research to work towards a just society that provides accessible and appropriate disability support,” McMaughan said.

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This story by Rae Lynn Mitchell originally appeared in Vital Record.