The Maryland Department of Health and Mental Hygiene awarded a contract to Inclusion Research Institute (IRI) to conduct a Quality of Life Survey for individuals with developmental disabilities. IRI has a history of working for the Maryland Department of Disabilities and the Maryland Department of Health and Mental Hygiene, in addition to similar work in a variety of other state and local jurisdictions. IRI has provided training and technical assistance, research and evaluation and material and survey development for people with disabilities for over 20 years.
The DHMH Quality of Life Survey for the Maryland Department of Health and Mental Hygiene, Developmental Disabilities Administration (DDA), is based on the National Core Indicators (NCI) which originally was developed in 1997 as a collaborative effort between the National Association of State Directors of Developmental Disabilities (NASDDDS) and the Human Services Research Institute (HSRI). The goal of the NCI is to encourage and support member agencies to develop a standard set of performance measures that can be used by states to manage quality and across states for making comparisons and setting benchmarks. Fifteen states initially worked on the Core Indicators Project, as it was originally known, and pooled their resources to develop valid and reliable data collection protocols. Over time, NCI has become an integral component of over half the states’ quality management systems and aligns with basic requirements for assuring quality in HCBS Waivers.
NCI states and project partners continue to work toward the vision of utilizing NCI data not only to improve practice at the state level but also to add knowledge to the field, to influence state and national policy, and to inform strategic planning initiatives for NASDDDS. The State of Maryland is participating for the first time in 2012.
The goal of the Maryland Quality of Life Survey for FY 2012-2013 is to identify and measure core indicators of performance of the Maryland state developmental disabilities service system. Objectives include: (1) collecting data from adult consumers with developmental disabilities and (2) collecting data from members and guardians and children and adults with developmental disabilities living in the state of Maryland.
The current set of performance indicators for the Maryland Quality of Life Survey includes approximately 100 consumer, family, system, cost and health and safety outcomes- outcomes that are important to understanding the overall health of public developmental disabilities agencies. These performance indicators form the basis for the development of the survey questions, designed for consumers, family members, providers and state systems data. Adults with developmental disabilities will be surveyed with a face to face survey, currently described as the Adult Consumer Survey (NASDDDS and HSRI, 2011) and based on the National Core Indicators.
Interviewers have been recruited across the state of Maryland through developmental disability organizations to conduct face-to-face interviews and were selected from a pool of applicants located in key Maryland regions. The administration of the DHMH face to face survey is based on the belief that persons with developmental disabilities are able to elicit more meaningful responses from those receiving services than traditional surveyors, as a result of their first-hand understanding of disabilities and services.
Families with members who have developmental disabilities and guardians will be surveyed using a mail-in-survey form, using one of three survey forms currently described as the Adult Family Survey, the Child/Family Survey and the Family Guardian Family Survey. These forms of the survey contains questions related to: information about the family, services and supports received, information and planning, access and delivery of supports, choices and control, community connections, satisfaction, outcomes and survey feedback.