About this Research Topic
At an international level, the Convention on the Rights of Persons with Disability (CRPD) sets forth the rights of people with disabilities to lead fully inclusive, self-determined lives. In the U.S., the Center for Medicaid and Medicare Services Home and Community-Based Services Final Settings Rule serves a similar purpose. People with disabilities who receive community-based services, however, experience a wide range of outcomes. At the present time, there is a lack of information as to the nature and quality of community-based supports and the outcomes people with disabilities experience. This data is needed to make good policy decisions and to assure that limited resources are used in an equitable, cost-effective manner. Measurement tools must have adequate psychometric characteristics, assess outcomes that are important to people with disabilities, be person-centered, and allow for monitoring changes over time. Although standards have been established for outcome measurement in many countries, in too many cases the tools currently being used fail to meet these standards.
The goal of this special issue is to establish the need for improved outcome measurement, identify current gaps and strengths, including issues related to measures for people with different types of disability and intensity of support needs, cultural and linguistic backgrounds and outline steps to move forward in improving outcome monitoring systems for people with disabilities. The issue will provide guidance for policy makers about the use of outcome data for system quality improvements; outline areas for further research investigation; provide suggestions for service providers as to critical areas in which outcome measurement is currently needed; explore the types of information and data to which people with disabilities and their families need access in order to make more informed decisions about services and supports. To share findings among different countries. To engage diverse audiences and stakeholders in a conversation about outcome measurement.
The proposed topic will cover a variety of themes related to the conceptualization, development, validation, and use of HCBS outcome measures in policy development, quality improvement, and service recipient choice and self-determination. Specific themes will include:
1) Frameworks for developing outcome measures with high quality psychometrics
2) Why does outcome measurement matter in community-based services?
3) The challenges of outcome measurement with highly diverse populations
4) The characteristics of effective community-based outcome measurement systems
5) Sensitivity to change: A critical requirement of outcome measurement
6) Ideal measurement standards and the challenges of applied measurement
7) Best practices in using outcome measurement data to drive policy development and implementation
8) Person-centered community-based outcome measurement
We are interested in including both research-based and conceptual papers.
Keywords: outcome measurement, community-based services, adults with disabilities, intellectual and developmental disabilities, learning disabilities, cognitive disabilities, brain injury, physical disabilities, mental health conditions, age-related disabilities
Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.