Exploring and Understanding the Advocacy Needs of Kentuckians with Developmental Disabilities - Research Brief

Oct 15, 2026

Summer 2018 research brief presents results of a statewide needs assessment on advocacy-based needs for Kentuckians with developmental disabilities and their families. Findings identify different levels and types of supports required to strengthen self-advocacy capacity and to guide planning and services at individual, local, and state levels. Background explains advocacy across self, individual, system, and legislative levels, and defines needs assessment as systematic procedures for determining needs, causes, and priorities for action.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages4

Reading Time10 min

AccessFree to download

Background

Levels of advocacy (self, individual, system, legislation)

Method & Analysis

Survey design and response collection

Qualitative inductive thematic analysis

Results

Major themes and example textual data

Summer 2018 Human Development Institute • University of Kentucky RESEARCHBRIEF An update on HDI’s research in the ﬁeld of developmental disabilities Exploring and Understanding the Advocacy Needs of Kentuckians with Developmental Disabilities Chithra Adams, Amanda Corbin, Luke O’Hara, Kathleen Sheppard-Jones, and Malachy Bishop In this research brief we present the results ofa recent needs assessment evaluating the advocacy-based needs for Kentuckians with developmental disabilities and their families. Results highlight the different levels and types of supports needed to build self-advocacy capacity and to inform effective planning and services and the individual, local, and state levels. Background Advocacy is the deliberate process of managing information and knowledge with the clear goal to inﬂuence and/or change the policies, practices, power dynamics, attitudes and/or actions that directly and positively affect lives. Advocacy can be employed by a directly or indirectly affected population, or by a third party on behalf of an affected population, including those inside and outside of government or other positions of power (Naeve, Fischer-Mackey, Puri, Bhatia, & Yegbemey, p. 1, 2017). Disability advocacy has played a central part in creating laws, policies, and programs that recognize the rights of persons with disability and provide opportunities for people with disabilities to live in communities. Advocacy can happen at any of four levels—self, individual, system, and legislation. Self-advocacy occurs when a person with a disability speaks up for their rights and for access. Individual advocacy occurs when an individual speaks out against the unfair treatment of a person with a disability. System advocacy is advocating for changes in programs, policies, or procedures. Legislative advocacy is advocating for changes in laws. It is important to identify speciﬁc needs at each one of these four levels to ensure that people with disabilities are able to advocate for their rights as well as ensure that programs and laws provide equitable opportunities for people with disability. “A need in the simplest sense is a measurable gap between two conditions—what currently is and what should be”(Altschuld & Watkins, 2014, p. 6) . Needs assessment is a“systematic set of procedures that are used to determine needs, examine their nature and causes, and set priorities for future action”(Witkin & Altschuld, 1995) . Advocacy needs assessment informs both how to use resources judiciously to empower individuals to advocate, as well as get a‘fresh look’ on the issues based on current socio-political climate. This research brief describes the ﬁndings related to advocacy based on two recent statewide needs assessments. Kentucky’s Developmental Disability network agencies, including the Human Developmental Institute (University Center for Excellence in Developmental Disabilities), Kentucky Protection and Advocacy, and the Commonwealth Council for Developmental Disability, jointly administer a needs assessment every two-years to inform program planning and delivery for individuals with developmental disabilities and their families. The survey asks respondents to rate their level of need across 10 lifespan areas, including advocacy. Other lifespan areas addressed in the survey included education and early intervention, childcare, employment, housing, transportation, community supports, health and wellness, healthcare, and housing. In addition to rating needs in these life areas, respondents are also encouraged to write in comments about speciﬁc issues within each life area. These comments provide a rich textual data and add depth to our understanding of continued inside | speciﬁc issues. This research brief presents the qualitative analysis of the textual data as it relates to advocacy.
Method & Analysis
The needs assessment survey includes both demographic and Likert-type scaled questions. The demographic questio

FAQs

What was the purpose of the needs assessment in this research brief?

It evaluated advocacy-based needs for Kentuckians with developmental disabilities and their families to inform effective planning and services at individual, local, and state levels.

How was the survey administered and what did it measure?

The survey collected demographic data and Likert-type ratings of need across 10 lifespan areas, including advocacy, and encouraged written comments within each life area.

What analysis approach was used to study the written advocacy responses?

An inductive thematic analysis approach was used, deriving themes from emerging patterns in the textual data without using a theoretical framework or a priori codes.

Oct 15, 2026

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