For many years, Virginians with intellectual and developmental disabilities (I/DD) and their families have reported difficulty finding, understanding and using information related to community services and supports.

Challenges faced by people seeking information are compounded by the complexity of the service delivery system and the fragmentation of sources of information. Federally funded, state administered services rely on established Local Departments of Social Services (LDSS) and Community Services Boards/Behavioral Health Authorities, referred to as CSBs throughout this assessment, to distribute and maintain current information.

The assessment identified four areas (shown in the infographic on page 1) in which improvements could result in increased access to useful information for people with I/DD and their families.

Key findings from each of these areas are summarized below, followed by the recommendations.

Available, Accessible and Useful Information

Information is frequently not easily located. When located, information is often highly technical with clinical terms making it difficult to understand. Many local websites are not accessible in accordance with federal requirements, and none of the local or state websites reviewed met the highest accessibility standards. Information is often not available in multiple formats to accommodate people’s varying linguistic and sensory communication needs and lacks contextual translation for languages other than English.

Multiple websites were identified that offer a searchable database of services available and information on eligibility processes. However, inconsistent information across these sites creates confusion for stakeholders. Websites with searchable database include the following:

• Department of Behavioral Health and Developmental Services (DBHDS) Developmental Disabilities Waiver website https://www.mylifemycommunityvirginia.org/

• Department for Aging and Rehabilitative Services (DARS) No Wrong Door website https://easyaccess.virginia.gov/

• Virginia 211 Human Service Access website https://211virginia.org/consite/index.php

• Department of Social Services (DSS) website for navigating and applying for assistance https://commonhelp.virginia.gov/

• Virginia Navigator Family of Websites (non-profit organization) https://virginianavigator.org/

The most readily available information is focused on the rules of administering the system, which may be useful for service provider agencies, but is not useful to people with I/DD or families. The information people with I/DD and families considered most useful is provided by another person with lived experience and with whom trust has been established.

Many CSB websites do not provide translated information, forcing families to rely on inaccurate machine translation like Google Translate. Most families who speak languages other than English described their experience with machine translation as illogical or challenging to understand because the words, when taken out of context, can translate with very different meaning, further contributing to lack of understanding. For families who are not primary English speakers, requesting an institutional level of care is an example of translation confusion. Families report concern and alarm over requirements to declare they are seeking to place their family member in an institution. For people with distrust of government agencies, this requirement presents a significant barrier to accessing services.

System Capabilities: Knowledge and Skills of Staff

There are some state efforts to ensure that informational materials are up to date, but there are opportunities to further streamline and improve these efforts. The highly complex and frequently changing nature of Medicaid home and community-based services (HCBS) information requires constant attention of the agencies responsible for assisting individuals with I/DD and families to navigate the initial eligibility and application process. DBHDS has implemented numerous system improvements over the past several years, some in response to the Department of Justice (DOJ) Settlement Agreement and many at the Department’s own initiative. DBHDS has the responsibility to ensure information and policy changes are clearly communicated and disseminated. The pace and volume of changes occurring makes it difficult to track all relevant communications. It is unclear if there are dedicated staff across the agency who are responsible for coordinating system-wide information updates in a comprehensive manner.

Staffing challenges at CSBs hinder their ability to provide up-to-date information. High turnover rates among intake and support coordination staff range from 0-75%, which results in staff who are less knowledgeable about the complex Medicaid rules. When these staff provide inaccurate information, it is left to the families and self-advocates to correct them. Families report feeling disrespected when pointing out contradictory information and feel particularly vulnerable when inquiring about inconsistent information between agencies.

There are opportunities to coordinate across CSBs. Rapidly changing information, procedures and documents causes each of the 40+ local agencies to update forms, manuals and instructions, often without enough time to keep all support coordinators informed. The rapid changes, without a thorough, statewide plan to purge prior information, contribute to the risk of missed information, resulting in inaccurate or incomplete information left on a website, brochure, form or other document.

Process Improvement

There is a gap in connecting families of transition age youth to the DD services system. The gap is two-fold, a knowledge gap between local school division personnel and CSB personnel, and lack of a formalized process to ensure families receive information about community-based services and supports. Some localities have excellent established practices and collaboration that could be replicated. Regulations covering Early Intervention outreach could be a model to establish a common practice of information sharing between education systems and CSBs.

Once people are connected to the DD services system, they may still have difficulty accessing information. The CSB intake process provides an opportunity to connect people to others with lived experience, but it does not appear to be fully utilized. When applying for Medicaid DD Waiver services, CSB intake forms include a check box asking if the family would like to speak with another family member. This assessment did not discover any formal procedure for assuring follow up when a family indicates yes on the form. No formal process exists for assessing the level of satisfaction of people initially seeking information on applying for developmental disability services. For example, did they find the information they were looking for and did it meet their needs? There are no expectations or accountability for timely, accurate responses to families and individuals with disabilities when they make an inquiry, or formally request information from a local agency regarding services and supports available.

Evaluation efforts are further hindered by the lack of readily available data on the number of people who initially request information on how to access and apply for CSB/IDD services. There is no data available on the number of people who initially requested services but did not complete the application/eligibility process because they did not understand the instructions, could not navigate electronic forms, or requested services by using the wrong terminology and were turned away. It is unclear if the data is available at some CSBs, but CSB staff who participated in interviews were not aware of such contact data. DD Waiver Waiting List data does not capture the number of people who applied for CSB services but were not found eligible. As required in the DOJ Settlement Agreement, data to improve the availability and accessibility of services, and to “enhance outreach, education and training," must begin with accurate reporting of the number of people who seek such information and request assistance in the first place.

Quality, Accountability and Customer Focus

Cultural awareness and understanding and developing information with a user focus are important to people and were found lacking in many agencies. More than 50% of self-advocate responses related to useful information also identified a customer focus/supportive, respectful human contact as a key component of useful information. Conversely, accountability for inaccurate information, missing information and lack of respect for individual needs were identified by more than 50% of self-advocate respondents as negatively impacting the usefulness of information.

I/DD agencies in many states have implemented customer-focused quality improvement efforts to ensure their policies, implementation of services and review of service effectiveness are informed by customer experience. Virginia participates in one such effort called the National Core Indicators (NCI) project. NCI collects customer-informed quality data for people who already receive at least one service in addition to support coordination, but it does not provide the satisfaction levels of people who are waiting for services. In addition, the Centers for Medicare and Medicaid Services released a draft set of recommended quality measures for Medicaid-funded home and community-based services, which includes three areas relevant to information access. By prioritizing the recommendations found in this report, Virginia’s I/DD system will be well positioned to support future federal evaluation efforts.

Recommendations Related to Available, Accessible and Useful Information

1. The Virginia General Assembly should require DMAS, DBHDS and the Virginia Department of Social Services to collaboratively convene a workgroup with representatives from CSBs, LDSS, DARS, The Arc of Virginia, Virginia Board for People with Disabilities and additional stakeholders. The workgroup should (1) identify information needed across all service system partners, and (2) evaluate the existing data systems to determine if enhancing an existing data system and implementation of a business enterprise system can integrate all existing data systems so that immediate, accurate and reliable information is available for use by all CSBs and LDSS. This will minimize the reliance on individual and institutional knowledge of HCBS information and reduce the burden on families and people with disabilities to locate correct information regarding access to services.

2. As part of the renegotiation process of the performance contract, DBHDS and CSBs/BHA should include a requirement for CSBs/BHA to describe how they ensure 1) they meet requirements identified in Section 508 of the Rehabilitation Act of 1973 and W3C accessibility standards, and 2) access based on language and disability for all information included on CSB/BHA websites. DBHDS should identify resources to monitor the performance contract for two years, and provide training opportunities to CSBs/BHA through subject matter experts with extensive knowledge in the area of recommended practices for meeting section 508 standards and assuring accessibility of electronic information as recommended by the W3C standards.

To identify current state-of-the-art practices, CSBs should review examples of highly accessible websites similar to the Ombuds Office of Developmental Disabilities in Washington State ( https://ddombuds.org/office-of-the-dd-ombuds-staff/) and explore the benefits of available software programs which maximize accessibility of electronic materials such as Recite Me or Internetrix.

3. Through its Language and Disability Access Plan (LDAP), DMAS should work collaboratively with DBHDS to develop simple, plain language graphic representations of the steps necessary to apply for Medicaid Eligibility and DD Waiver home and community-based services. The graphics should be distributed throughout the I/DD system in multiple languages that are most frequently spoken in each region of the Commonwealth. DMAS and DBHDS should commit to utilizing resources such as the U.S. Department of Health and Human Services Centers for Medicare & Medicaid Services Toolkit for Making Written Material Clear and Effective

4. DBHDS and CSBs/BHA should ensure a user-centric approach when developing new information for use by people with disabilities or their families by prioritizing the implementation of an Inclusive Design Process ( https://idrc.ocadu.ca/about/) in their operating budgets. All new communications – electronic, printed documents, videos, audio files – should involve people with disabilities and their families to ensure it is accessible, easily understood and useful. DBHDS should consider if this fits within the role of the Individual and Family Supports Program (IFSP), including their regional Councils and other related activities, to develop a process for ensuring, at minimum, that people with lived experience who are the target audience have provided input and feedback on communications for families and self-advocates prior to distribution.

Recommendations Related to System Capabilities: Knowledge and Skills of Staff

5. DBHDS, with stakeholder input, should identify staffing within DBHDS responsible for proactively assuring people with I/DD, their families and appropriate CSB/BHA intake and support coordination staff have access to current, up-to-date and accurate simplified information on Medicaid HCBS program requirements including how the system functions, and how (in practical terms) to access the many and varied resources available.

6. DBHDS should expand on the existing regulations for support coordination training required within 30 days of employment and covered in the CSB Performance Contract under Section 9(c)(5)-CSB Responsibilities/Scope of Services/ Case Management Services Training. Requirements for support coordinators should include annual training designed to promote understanding of the cultural and linguistic expectations targeted specifically to the cultural and ethnic population of the catchment area based on the number of people living there whose primary language is other than English and/or have Limited English Proficiency.

7. DBHDS should incentivize CSBs, possibly through a pilot project, to incorporate self-advocates in paid positions to bring perspective and experience to the training of support coordinators, including adding a self-advocate-led module in the required support coordinator training modules. The self-advocates, who represent diverse cultural, racial and ethnic backgrounds, can provide guidance through their lived experience on the education of individuals and families about services and supports and advise on the principles of person-centered planning and individualized supports.

Recommendations Related to Process Improvement

8. DBHDS and DMAS should establish a working group to identify effective methods for disseminating information such as ensuring (1) adults who seek information about I/DD services consistently receive referrals to the CSB/BHA, and (2) CSBs/BHA provide consistent information to people newly seeking services. The workgroup should also identify methods for ensuring the CSB and LDSS intake staff are aware of the Navigating the DD Waiver Manual and share it with families and people with I/DD at first contact. DBHDS should produce the manual in other languages and engage with applicable representatives from other cultures to ensure the translation is culturally and context sensitive.

9. During its annual review of the Navigating the DD Waiver Manual, DBHDS should expand and build on the existing flow chart and steps identified in the manual to further describe for families the documents needed and decision points made at each step of eligibility determination, so that statewide implementation of the intake process is consistent, and local agency intake staff have an information source to reference when introducing new referrals to the I/DD system.

10. DBHDS and CSBs/BHA should work together to further assess the need for including I/DD intake and eligibility process in the Community Services Performance Contract Scope of Work, with particular attention to length of time to complete the process, and the accuracy of information shared, similar to waiver performance measures. The process description could be developed with similar expectations as those found in the Early Intervention regulations regarding specific roles for referral sources, outreach to the community and timeliness of response.

11. DBHDS and CSBs/BHA should work collaboratively to determine the successfulness of the checkbox on intake forms which asks, “Would you like to speak to a family member?" They should determine if families and self-advocates who desire to speak with a family member can do so early in the process.

12. DBHDS should resume using a two-way feedback process with CSBs/BHA when implementing new procedures or requirements to ensure the new process is designed with input from CSB staff, families and people with lived experience, and includes a realistic implementation period. This approach, used in the past, would assist with assuring roll out of a new procedure considers existing resources, conflicting requirements or limitations, and the most efficient method for process re-design and development.

13. DBHDS should establish a method for determining if CSBs/BHA successfully met the family’s need for information/assistance (e.g., were needs met fully, partially, or not at all), during the intake and eligibility determination process. Refer to national plain language guidelines for assessing the effectiveness of written information at https://www.plainlanguage.gov/guidelines/. Similarly, DBHDS should require CSBs/BHA to seek feedback from families who call for initial intake support, regardless of the outcome of their application. For example, Did we provide the information you were looking for? Did you understand the information? Does the information meet your need for the next steps?

14. Virginia Department of Education (DOE), along with the local school divisions, should work with CSBs/BHA within the school division’s catchment area to designate a staff to act as a lead for school-to-adult life transition and work with the school division’s Transition Coordinator to ensure accurate and timely information is distributed to families. CSBs/BHA should utilize existing school-to-adult life transition resources such as PEATC's Transition University for CSB staff training and development.

15. The CSBs/BHA, through their member organization, Virginia Associations of Community Services Boards (VACSB), should consider operating a Community of Practice for School to Adult Transition, to foster learning and identify some of the exemplary practices taking place in several CSBs.

Recommendations for Quality, Accountability and Customer Focus

16. CSBs/BHA, through the Quality and Outcomes Committee in collaboration with DBHDS, should develop a framework for Quality Improvement based on nationally researched and established quality programs, similar to the Model For Improvement® demonstrated by the Institute for Healthcare Improvement (www.ihi.org) or the Malcolm Baldrige National Quality Program (www.nist.gov/baldrige) to establish a formal framework through which a customer-focused, strategic and improvement-oriented system can emerge, and begin to expand beyond an exclusively compliance based quality model.

17. DBHDS and CSBs/BHA should utilize resources, such as The National Cultural and Linguistically Appropriate Standards (CLAS,) that describe a framework to deliver services that are culturally and linguistically appropriate, respectful, and responsive to cultural health benefits, preferences and communication needs for the population served. Standards can be employed by all members of the HCBS community. See A Practical Guide to Implementing the National CLAS Standards December, 2018 CMS.gov for guidance.