Family members provide the majority of support to people with disabilities across the life span. As family caregivers immerse in their role of providing support to a loved one, several issues arise that may impact the well-being of the caregivers. Hence, the promising practices research project aimed at identifying methods of allocating the needs of caregivers and best practices that may support the caregivers and the person with disabilities in their journey.
Recommendations to Improve Data Collection to Monitor, Track, and Evaluate State Approaches to Family Support Services
The first part of the project included identifying data collection methods that monitor, track, and evaluate family support services across states and provide recommendations to improve these methods. Currently, there is very limited nationally representative data available about family caregivers and family support services, let alone datasets that allow for state tracking and comparisons. Improvements will allow us to identify promising practices and assess how states are doing in supporting families.
To identify existing datasets, we conducted an environmental scan with aid from the advisory committee members. Ultimately, a non-exhaustive list of 14 relevant datasets were analyzed, summarized and compiled. Findings fell into three categories: 1) Datasets that provide nationally representative data; 2) Datasets that provide state-level comparison data; and 3) Scorecards which use indicators from various data sources to track state progress and make comparisons
Family Support Promising Practices
The second part of the project included identifying and assessing an initial set of promising practices. Promising Practices can be defined as practices that are considered as successful in one setting and hold potential for application in other settings with or without additional modifications. Identifying Promising Practices in the area of Family Support is an effective way to translate knowledge across local settings and states. This project identified Promising Practices by soliciting inputs from stakeholders in the aging and disability communities, investigated candidate Promising Practices, and evaluated and prioritized the outcomes.
Specifically, we conducted a broad-based environmental scan, consisting of nominations from the aging and disability communities and a literature review. A family support expert workgroup was convened to assess each practice, prioritize which ones to highlight, and provide additional guidance on describing practices. Based on this process, we developed summaries for 28 practices arranged in three domains: Connections & Partnerships (Emotional Supports); Discovery & Navigation (Information and Training Supports); Goods & Services (Instrumental Supports).