The foundation recently completed a series of focus group discussions exploring potential opportunities to better support easy access to information that would assist families and care givers. The goal of this research was to find out how people search for disability information, services and supports, and how to make this search easier and more efficient. Individuals with disabilities, family members, care givers and a variety of nonprofit service providers participated sharing their experience and viewpoint on this complex issue.
System Navigation Project Summary Phase 1 – April 2016
To engage the community to determine if a need for system navigation support exists. It’s suspected that there are continuing obstacles in locating information necessary to access resources in a timely manner.
This fact gathering phase is the first step in determining what, if any, further action steps will be taken.
Work completed continues to support the importance of one’s ability to locate and easily access desired information when it is most needed. Feedback relative to the current process and need was collected through meetings with members of the service community, focus groups, and online surveys. Participants, receiving or providing services within Allen County, represented a range of diverse intellectual, developmental and physical disabilities. To promote open discussion, an independent consultant was used to facilitate focus group meetings involving foundation grantees. Nonprofit service providers and individuals were grouped separately.
Results from all sources were compiled to better understand the availability and flow of service and program information between providers, individuals, family members, and caregivers. Findings revealed the same top issues between groups of individuals and a strong link with top service provider issues.
A review of prior AWS Foundation Research Reports completed in July 2008 and May 2013 offer summary findings that identify similar system navigation needs and opportunities. This suggests a long standing problem exists rather than a symptom of another issue.
Upon diagnosis, leaving the physician’s office with little or no resources
Need for and value of support groups
Every single person interviewed stated they invested countless hours searching information on the internet. They used search engines as a primary source of information. The following themes regarding the internet information were stated as:
Isn’t always trustworthy
Isn’t always accurate
It’s overwhelming (i.e., difficult to understand, too much information, unsure if information was useful)
Additional repeating topics were:
The transition between stages and ages -what’s coming next? In advance of occurrence, parents want to learn what to expect for their child at each step of life’s transition points and what are the options when aging out of one phase and into another.
Schools lacking the ability to support children with a disability citing training, knowledge and physical building resources.
When asked what could be done to best assist families, a parent with two children with a disability stated, “System navigation would be at the top of the list and a game changer if AWS could solve this information problem.” Those present agreed.
Nonprofit Service Providers
All service providers spend a substantial amount of time researching and maintaining program and service information available outside of their organization. Each identified using the internet and support groups as primary sources.
Agencies lack the resources to:
Provide clients with a list of community resources in a timely and accurate manner
Keep community resource information up to date
Agencies lack opportunity to brainstorm how to best work together
Additional repeating topics were:
Dealing with transitions
Connecting individuals, categorized by condition, to provide the ability to join them with support groups and resources
Previous Research Reports
In 2008, the research summary states, “One of the greatest needs expressed in all of these groups was for information regarding services and resources. This information was said to be both vital and scarce by all participants. Currently, they are working in a system where “you don’t know about stuff and then things just sort of fall out of the air”. It was made clear that this was not considered an efficient information-gathering technique and that it was causing unnecessary stress.”
Discussion began with the focus groups being asked what they “first needed” either when first diagnosed themselves or when a child was first diagnosed. The report states, “Clearly, the consensus of what these respondents first needed was information. Even in the cases where they responded “family support” information, they believed this would be an avenue to all informational support.”
In 2013, the final report presented the following statements:
Although in the 2008 AWS study, we heard similar remarks about medical professionals, these groups expressed deeper frustration and disappointment (regarding information provided during physician visits).
There also was a difference in the need for more information, a prevailing theme in the 2008 focus group study. In these groups there was the expressed feeling that the missing information (regarding what to do and services to obtain) was limiting their child’s life. In other words, many believed that their children’s lives had forever been altered because of information the parents did not have.
Many parents believe that much of the vital information was found “by luck”. Participants wanted and needed information in an intentional manner rather than the unstructured and chance manner experienced now. Parents who were in support groups were clearly the advocates with the most information. Not all parent-advocates, however, were even aware that there were parent support group opportunities. Professionals and advocates alike believed that the best source of information for these parents came from other parents.
Recommended Next Steps
Determine if AWS Foundation desires to engage in the creation of some form of system navigation. If so, establish funding parameters, begin project planning and create a project team.
Follow up and communication Phase I findings with focus group participants.