Research Brief - Nothing about us without us: Asking Kentuckians with disabilities about what they need to thrive

Oct 15, 2026

Research Brief updates the Human Development Institute (University of Kentucky) on a needs assessment for developmental disabilities in Kentucky. Developed with the Commonwealth Council for Developmental Disabilities, Kentucky Protection & Advocacy, and HDI, the project gathered demographic data and rated ten life-need areas using Likert-scale and open-ended questions. Results highlighted transportation, employment, and housing as top needs and surfaced recurring themes across these domains, translating findings into practice, policy, and services through multi-pronged stakeholder engagement.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages4

Reading Time10 min

AccessFree to download

Background

Method and Research Questions

Results

Engaging State Leaders

Engaging Organizational Staff

Spring 2016 Human Development Institute • University of Kentucky RESEARCHBRIEF An update on HDI’s research in the field of developmental disabilities Nothing about us without us: Asking Kentuckians with disabilities about what they need to thrive Mevoli, K., Tanner, A., Adams, C., Rhodes, A. Warren, T. and Sherif, V. Background In spring of 2015, the Commonwealth Council for Developmental Disabilities (CCDD), Kentucky Protection & Advocacy (KPA), and the Human Development Institute (HDI; University of Kentucky) developed a needs assessment to identify areas of high need for people with disabilities in Kentucky. The purpose was to gather data in an effort to assist the above agencies in planning future programs and initiatives to benefit people with disabilities. A needs assessment may serve various roles in the public sector, including identifying unmet needs, assessing a specific population’s needs, evaluating the effectiveness of services, providing evidence of community support, increasing public involvement, guiding decisions, designing logic models, making changes, or informing policy (Engle & Altschuld, 2014; Stevens, 2004; Witkin & Altschuld, 1995) . In this needs assessment, the goal was to identify areas of high need for people with disabilities in Kentucky and then to develop practice, policy, and service solutions at the systems level, organizational level, and consumer level. A community participation approach was used to disseminate the data and enable persons with developmental disabilities (DD) to develop a capacity to contribute to their own development as well as the development of the community. In this Research Brief, we describe the process by which the results of this survey are being translated into policies, practices, and services that address the needs of Kentuckians with DD and their families. Method and Research Questions The target populations for the survey were individuals with DD, their families, service providers, and administrators. The needs assessment survey asked for demographic information (including race/ethnicity, gender, county, and whether the participant was a person with a disability, a family member, or a professional) . Respondents were asked to rate ten areas of life needs on a Likert-type scale. The survey also included open-ended questions to gather information on specific issues that individuals faced within a particular area of need. The needs assessment survey was provided in both paper and electronic format, and was made available in both English and Spanish. The paper survey was disseminated at family and advocacy events, as well as at conferences, along with a pre-paid envelope so that respondents could mail the completed surveys directly to the HDI evaluation unit. The electronic link was primarily disseminated by the three organizations, and was hosted by HDI. The survey link was activated in April 2015 and was open until June 2015. Results The majority of respondents were white, non-Hispanic females between 40-59 years of age (53%) . Forty-one percent of the respondents resided in Daviess, Fayette, Jefferson, and Kenton counties (Figure 1) . The ten areas of life need were: self-advocacy, education and early intervention, childcare, healthcare, health and wellness, employment, housing, transportation, recreation, continued inside and community supports. Respondents were asked to rate the ten areas on a five point scale (1-very high need, 2-high need, 3-moderate need, 4-low need, and 5-very low need) . The areas identified as highest need (rated as a ‘high’ or ‘very high’need) were transportation (48%), employment (46%), and housing (46%) . Five major themes arose for transportation: accessibility, affordability, availability, dependency, and reliability. Three major themes surfaced for employment: inefficient systems, limited opportunities, and misconceptions about benefits. Five major themes emerged for housing: accessibility, finan

FAQs

What was the purpose of the Kentucky needs assessment described in the brief?

It aimed to identify areas of high need for people with disabilities in Kentucky and use the findings to inform future programs, initiatives, policies, and service solutions at multiple system levels.

Who completed the survey and what kinds of questions were included?

The survey targeted individuals with developmental disabilities, their families, service providers, and administrators. It collected demographics and asked respondents to rate ten life-need areas on a Likert-type scale, along with open-ended questions about specific issues.

Which life-need areas were reported as highest need in the results?

Transportation (48%), employment (46%), and housing (46%) were identified as the highest-need areas, defined as rated “high” or “very high need.”

How were the survey results translated into actions after analysis?

Findings were used to help analyze needs, develop programs, and inform policies. A multi-pronged stakeholder engagement strategy involved state leaders, organizational staff, self-advocates, and families to identify practices and policies addressing issues within high-need areas.

Oct 15, 2026

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