VMRC conducted four Purchase of Service (POS) Disparity and Equity in Expenditures public meetings via Zoom. We also provided a presentation targeting our self-advocates during their weekly “Zoom Chat” and an additional meeting with one of our community parent groups which took place during their weekly Friday meetings. The first public meeting took place on March 25th from 2:00 pm to 4:00 pm and the presentation was done in English with Spanish Interpretation. The second meeting on March 30th from 4:00 pm to 6:00 pm was presented in Spanish with English Interpretation. The third meeting was provided on May 28th from 11:00 am to 12:00 am during the Self Advocacy Council 6 (SAC6) Friday Chat using a plain language format for our self-advocates with assistance from the SAC6 leadership and the SCDD North Valley Hills office. The fourth presentation was done with collaboration of the parent group Special Needs Assistance Parents (SNAP) on June 23rd from 6:00 pm to 7:30 pm presentation was done in Spanish with English Interpretation.
Due to COVID-19, all in-person meetings were cancelled and the in-person format was replaced with an online Zoom meeting or webinar format. We decided that having several different dates and varying times during the week for public meetings was important to give families different opportunities to attend one of the meetings. We also decided to collaborate with one of our Community Parents groups to help us with accessing more families. Flyers with the public meetings information that included dates, phone number to the Conference call and Zoom link were shared on our Valley Mountain Regional Center (VMRC) website, social media sites (Facebook, Twitter, Linked In, and Instagram), Constant Contact email groups, and distributed to our local parent groups and local community partners. One of the biggest changes we had during our Zoom meetings was adding simultaneous Interpretation which made it easier for families and VMRC staff when it came to presenting and families understanding the presentation. During our English Language public meetings, we had Spanish Interpretation and during our Spanish Language public meetings we made sure to have English Interpretation. Last year we found it difficult to share both Spanish and English Power Point presentation at the same time which is why we decided that this year we were only going to share the Power Point Presentation in the Language that the Public Meeting was being held. VMRC staff attempted to further explain the material and let those attending know that the PowerPoint was posted on our website in English and Spanish. After every meeting, we made sure to have enough time for participants to give feedback and asked questions. Families and interested parties not only had the opportunity to ask questions but they also were able to write comments during the presentation which we addressed during and after the meeting.
An additional component noted, was the inability to breakdown the ethnic group, “other” in an understandable way due to the categories limited to the CDER and SANDIS groupings in place. Our data also showed a difference when comparing languages in regard to disparity, rather than only ethnicity. The information provided to our consumers and families, as well as community members was very important and we worked hard to help families better understand the services VMRC offers and how the services are being utilized. The statistics provided also gave those participating a better understanding of what disparities are within VMRC. As information was presented, VMRC staff asked that experiences or concerns be shared. We discussed the DDS Equity Initiative and explained how the money flows to VMRC, along with the POS data, indicating the authorizations and expenditures based on use and broken down by age, race, language, diagnosis, and resident type. We also reviewed outcomes from last year’s meeting and initiatives taken due to the feedback.
Some of the challenges that families voiced continue to be focused on not knowing or understanding how services work. Gaining access to services is also one of the biggest concerns families expressed during the meeting. And, based on the information obtained during the public meetings, especially the Spanish-speaking meeting—trust between the regional center and the families is a major obstacle. This will need to be addressed to a greater degree in the upcoming year. Our newly formed Cultural and Linguistic Committee with community membership will be key in creating an improved climate, as will the VMRC Strategic Plan strategies as related to this subject.
Our data indicates that one of the major disparities we have at VMRC is with adult services such as day programs, care homes, transportation, etc. We heard that it is very difficult for our Hispanic families to trust their children to other people or agencies. Families have the fear of not knowing how they will be treated or if their children will be able to communicate with their family if they are being mistreated. Statistically, post education adult services are more utilized by the White population versus Hispanic but there are no disparities in this utilization because the expenditures are equal to the proportion of population for each ethnicity. However, as our population grows, Hispanics are proving to be the youngest and most populous in our regional center. Our data also indicates that our Hispanic families do access services more if the service is being provided at home. Case in point, Hispanics have a higher percentage of respite utilization versus white families. It is also important to understand that currently, the largest population we have in the regional center is Hispanic between the ages 3 and 14. When looking at the data and purchases from our FY 2020 the percent of Hispanics with a purchase authorization is 40.6% compared to the white population being 34.9%. It is important to state that the majority of purchases for the Hispanic group were made up of respite services which were provided at home compared to Whites utilizing services that are provided outside of the home. One of the things we decided to do was focus closely on smaller bands of age groups to assess the extent age correlates to our expenditure finds. This deeper look across age bands revealed for us for the first time a large disparity of POS expenditures beginning at ages 8-9 years old (14% less proportionately than Asians and Whites) and most significantly in the 10–12-year-old age band (38% less proportionately than Whites). In the children’s age group, the White consumers represent 26% of our population and almost half of our children are Hispanic.
Another challenge we are facing as a regional center is trying to communicate with families about what the need is at home when it comes to adult consumers. We need to figure out what type of services they would want to see available for their adult children since in a few years the children in our regional center will be adults and if consumers continue to live with their families and/or are encouraged by family inclination, but are not comfortable accessing current adult services, the disparity will increase more in this area. To address this issue, we are currently working with our local parent groups in trying to get data and feedback from families on what services they would like to see for their adult children. Working with focus parent groups that will also target certain age groups where we see the biggest disparity and with their help try to find out why is it that they might not be accessing services. One of the biggest concerns families currently have, is that they do not understanding how adult programs work and or sometimes do not agree with the philosophy of independence and autonomy of the individual over the group or family unit. They feel that many parents are being misinformed and they would like to see more information, especially in their language. Having this public meeting is always helpful when trying to understand families and their needs. It also helps the VMRC understand the disparities, especially in breaking down the data to understand the area of need for families. The meetings brought focus to the fact that more education and practical knowledge is necessary for all to better understand the services currently offered, tweaks that may be needed, or services re-imagined, all with the cultural aspect included in development.
In addition to the meetings with parent groups, VMRC is determine to learn more from adult consumers. We received a lot of feedback from the meeting with adult self-advocates on May 28th. The Zoom presentation was incorporated in their weekly chat session. Several concerns were brought up which will help guide us in the upcoming year. Many of their barriers continue to revolved around COVID-19 and how it has affected them and continues affecting them. It is noted that those concerns are driven by not only current, but future needs as the world changes and as we become even more aware of their needs to experience a full and well-rounded life. Items mentioned include: access to technology and training, connection issues, access to plain language information, care home utilization of technology, multi-cultural self-advocate groups, person-centered planning and follow through, regular news from the regional center and mental health tips are positive, as well as interest in being involved in new Service Coordinator trainings.
Other major concerns noted by stakeholders target the need for more individualization and privacy in care homes, as well as ILS programs for transition-aged youth to further enhance skills learned in schools. Antiquated services was a topic as current services do not appear to be innovative enough for growing preferences. More wrap-around services appear to be the most desired by caregivers as the need for personal assistance is expressed. The influx of families moving to our foothill counties will require more resources, as will the more populous counties. And, as more behavioral challenged cases at younger ages occur, the need for crisis level services and more intensive level of school placements seems to be a top priority for families. The number of autism cases also continues to grow, resulting in differing expectations of services.
All of the community, family, and consumer input is invaluable for better understanding the concerns and focus of our work. Based on our data generated for the public meetings and feedback received, VMRC has leaned that we must be conscious of the variables involved to begin planning for future needs and preferences. Elements discussed that we will need to consider while seeking cultural competence and thereby reducing disparities include:
In response to barriers noted, while keeping in mind the trends we are witnessing, VMRC will be developing a plan to address the priority needs bought forth during the Disparity and Equity meetings. We continue to work with care homes, as this has been identified as a need.
Overall, the priorities conveyed to VMRC were:
Initial plans to address these items include: 1) parent and consumer participation in trainings as applicable; 2) parent trainings on navigating the regional center system; 3) training for Service Coordinators so they have the knowledge needed to provide good information to consumers; 4) trainings for providers to ensure quality services; orientations for new consumers made eligible to discuss services and expectations of VMRC and the system, in general; 5) continue to identify resources needed and work hand-in-hand with Community Services to develop those services; 6) Person-Centered Plans for all individuals. After going through this recent process, we hope to breakdown the statistical information in a more understandable and meaningful format in the future. A five year comparison in data will be presented at our next such meeting in an effort to simply show the differences made through our work.
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