Access to disability services information depends on many factors, from an individual’s digital literacy, social connections and physical mobility to the interface design of websites. However, it is also true that the availability of disability services information (e.g., how to apply for a Medicaid Waiver) and how such information is managed and provided to end users in Virginia are also critical factors that shape people’s information access. This assessment focuses on understanding the latter, namely, the “information ecology" of disability services in Virginia. Specifically, we examine how service providers, both governmental and non-governmental agencies, manage information about disability services, the challenges staff face in providing information, and how different types of information are communicated and shared across different providers.

Findings based on survey and interview data analysis suggest that service providers in different sectors face common challenges in managing and providing information to people with disabilities and their family members. Still, providers also must deal with unique challenges specific to their service sectors. For example, common challenges in managing and providing information include language barriers, community outreach to underrepresented groups, misinformation and resource constraints. Meanwhile, state agencies reported that they found it difficult to manage and provide information consistently due to staff turnover, inconsistent workflows and varying use of information systems. Local agencies, such as Community Services Boards (CSBs), often took on additional work as they provided information to people from other jurisdictions or states. Non-governmental agencies, such as nonprofits and advocacy organizations, often became a first-stop shop for any informational queries, as many people found it easier to contact non-governmental agencies rather than go directly to governmental agencies.

Within the information ecology of disability services, diverse providers play different roles in providing information about disability services while sometimes being disconnected from each other, creating “information silos." We developed recommendations to reduce the managerial and ecological issues hindering people’s information access.

Implementing these recommendations would help the Commonwealth continue to improve the management of key information in Virginia, allowing people to have consistent access to information through diverse channels.

Recommendations Related to the State’s Consistency Management

1. The General Assembly should endorse and fund the design, development and implementation of information systems and/or playbooks at relevant state agencies that provide information about disability services in the Health and Human Resources Secretariat. This approach would facilitate smoother staff transitions and ensure that agencies maintain consistent quality of their information services despite staff turnover.

2. The General Assembly should endorse and fund the design, development and implementation of an automated information system to monitor and notify staff of policy or regulatory changes. The form of the information system could be a dashboard, email alert system or an alert module embedded in the state’s internal information systems.

3. The Department of Human Resource Management (DHRM) should work with the Office of Data Governance and Analytics to develop information quality validation training for state employees.

Recommendations Related to Visibility and Strategic Management at Local Agencies

4. The Community Services Boards (CSBs), Department of Social Services (DSS), Virginia Department of Health (VDH) and Department of Behavioral Health and Developmental Services (DBHDS) should increase the visibility and strategic discussion about types of work (both care work and defined work) conducted at local agencies.

Recommendations Related to Enhanced Information Networks between Governmental Agencies

5. The Department of Behavioral Health and Developmental Services (DBHDS), with support from the Department of Medical Assistance Services (DMAS), should develop and implement innovative strategies for information networks that facilitate efficient communication and data validation between local agencies (e.g., CSBs), and between local and state agencies. These networks should enhance access to accurate information, streamline the validation process and enable the sharing of best practices.

6. The Department of Behavioral Health and Developmental Services (DBHDS) should support the establishment of a monthly forum or ongoing chat room where support coordinators can share best practices, raise concerns and answer common questions. This will allow local agencies to share their key networks of information providers with other agencies.

Recommendations Related to Improved Network between Non-Governmental and Governmental Providers

7. Virginia’s No Wrong Door system should be enhanced to better support providers and payers of disability-related information by implementing a single validation tool for advanced information systems. This advancement will streamline access by encouraging providers to update their service information through a standardized channel. It will also enable the cross-sharing of data, populating multiple resource databases to enhance the accuracy and reliability of information.

Recommendations Related to Supporting the Creation of a Stigma-Free Environment

8. The Department of Medical Assistance Services (DMAS), Department of Behavioral Health and Developmental Services (DBHDS), Department of Social Services (DSS) and Virginia Department of Health (VDH), in coordination with the stakeholder community, should collaboratively develop and implement strategies for creating a stigma-free atmosphere to mitigate information access issues.

Recommendations Related to Improving the Capacity of Government Information Sources while Providing an Easy Validation Method for Non-Governmental Information

9. The Department of Medical Assistance Services (DMAS), Department of Behavioral Health and Developmental Services (DBHDS) and Department of Social Services (DSS), in coordination with the government-initiated resources and initiatives, should collaboratively develop and implement strategies for improving the capacity and awareness of their information services (e.g., the number of frontline staff, promotion of existing information systems), because people of diverse backgrounds and regions heavily use government resources as their main information sources, while not being aware of certain government-sponsored websites (e.g., No Wrong Door).

10. Because many people with disabilities and their family members acquire disability services information through Google searches, non-governmental agencies, websites and social media, the Department of Behavioral Health and Developmental Services (DBHDS) and the Department of Medical Assistance Services (DMAS) should take proactive action to increase the monitoring of information provided by these sources to mitigate misinformation or any conflicting information provided by different sources.