By Carli Friedman, CQL Director of Research
In the United States, the long-term services and supports system has changed dramatically, from an institutional model which granted limited rights and opportunities to a community-based model which aims for person-centered practices and community integration. However, today’s fiscal landscape has resulted many disability services organizations struggling to implement person-centered excellence in order maximize the quality of life of people with disabilities.
The aim of this study conducted by CQL | The Council on Quality and Leadership was to explore the priorities and progress of disability service organizations in the United States. We examined survey data from approximately 7,400 stakeholders including:
- People with disabilities
- Family members
- Direct support professionals (DSPs)
- Service organization leadership
- Board members
- Community partners
Each stakeholder rated their organization’s quality on the following eight topics on a four-point scale:
- Person-centered assessment and discovery
- Person-centered planning
- Supports and services
- Community connections
- Quality and accountability
- Individualized budgets
We analyzed the results of the surveys to determine not only how organizations were doing, but also how perceptions diverged according to different stakeholder groups.
Achievement of Different Priority Areas
Organizations were most successful at person-centered assessment and discovery, and supports and services (see figure). However, they were less successful at community connections, workforce, and individualized budgets.
Differences Across Stakeholder Groups
There were also large differences across stakeholder groups – different groups of stakeholders often had very different opinions about what was going well and what needs improvement. For example, in terms of individualized budgets, board members believed organizations were doing significantly better than organizational leadership or DSPs (see figure). Another example is community connections, people with disabilities, family members, DSPs, and organizational leadership believe organizations could use more improvement in this area than board members and community partners did (see figure)
Individualized Budgets By Stakeholder Group
Community Connections By Stakeholder Group
According to our findings, “States need to recognize the strain and limitations these budgets place on disability service agencies and their workforce, and increase their funding accordingly. In the meantime, disability service organizations need to utilize creative low-cost solutions to maximize the empowerment of the people they support” (Friedman, 2018, p. 8).