In 2019 behavioral health company Key Essentials to Behavior Management (KEBM) conducted a series of modules through the San Gabriel/Pomona Valley Regional Center (SGPVRC). The purpose of these modules was to provide information to families regarding the purpose of the Regional Center, resources and services available, and assess if the information distributed made families feel more comfortable and/or knowledgable with using the services and resources provided by SGPVRC. Surveys and quizzes were used to collect this data, and I was responsible for translating piles of written documents into numbers and graphical data. While doing this I was able to come across a variety of consistencies reported by a variety of families, specifically those in the Black community.
Also, before going further, I did seek out and receive permission from KEBM to discuss this project. No identifying information is at risk, as none was used when compiling the data, other than using names to pair with a participant number used to maintain the anonymity of everyone. This was only used to compare before and after results.
Many families reported being hesitant in accessing help for their special needs children, even when those children were now adults. Within the surveys collected, families reported stories of being told to lock their children away in their homes, along with other advice that most people wouldn’t believe came from medical professionals, and stories of shame they were fearful of receiving from family, friends, and strangers alike. The majority of respondents reported that their respective learning histories all included fears based on traumas from either personal interactions, or stories of medical history and its negative events within the Black Community.
Results of Modules
Prior to going through a series of 4 modules, attendees filled out a survey giving their barriers to reaching out for Regional Center services. Their responses were later divided into the following categories: Access to recourse, Lack of knowledge, Family fears (failure to plan), and Family/Cultural shame.
Specific responses included the following:
- Fear of the health field
- Lack of faith in minority health care
- Previously given bleak future outlooks by professionals
- Professionals have been unhelpful previouslyCould not answer questions
- Unrealistic goals for services
- Unaware of available programs
- Unaware of adult services
- Embarrassed/ashamed by behaviors
- Thought only options were to lock away at home or in an institution
After going through the 4 Modules, families reported having gained more knowledge about available resources, Regional Center services, the importance of self-care, and generally helpful information in working/living with family members who are dually-diagnosed.
What I was able to take away from going through all the written data was this, many families in the Black Community still feel afraid to trust the medical and healthcare systems. There is still an atmosphere of shame associated with having mental illness and behavioral disorders. However, if efforts are made to give families information and reassure them of the changes made, families will feel more comfortable seeking help for mental and behavioral health. Many of the families reported feeling more positive about seeking services and help, which will require targeted teaching and training.