VMRC conducted two Purchase of Service (POS) Disparity and Equity in Expenditures public meetings. Both meetings were held Hybrid. We also provided a presentation targeting our self-advocates during their weekly “Zoom Chat” The first public meeting took place on March 24th from 4:30 pm to 6:00 pm; the presentation was done in English with Spanish Interpretation both in-person and by zoom. The second meeting on March 25th from 4:30 pm to 7:30 pm was presented in Spanish with English Interpretation both in-person and by zoom. The third meeting was on March 4th 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. Before conducting our public meeting, three small focus group meetings were held with local parent groups. The first focus meeting was on March 7th with the parent group Hear my Voice. The second meeting was on March 7th with Family First, and the third meeting was on March 10th with the Intergraded Community Collaborative parent group. Through the Focus groups, we collected data and feedback from parents on addressing some of the disparities barriers they currently face in the Regional Center. All feedback collected during our focus meeting was presented during our Public Disparity Meeting.
Due to COVID-19 numbers decreasing in our community, we were able to have our public meetings Hybrid. We publish Flyers with the public meetings information that included dates, phone number to the Conference call, Zoom link, and contact information for parents to contact VMRC to confirm in-person attendance. Flyers were shared on our Valley Mountain Regional Center (VMRC) website, social media sites (Facebook, Twitter, Linked In, and Instagram), Constant Contact email groups, distributed to our local parent groups and local community partners, and mailed out directly to all active VRMC families. Mailing out the flyer directly to the families helps with the attendance at the public meeting. During our English public meeting, we had 98 parents attend via zoom and five in-person; at our Spanish presentation, we had 234 parents attend via zoom and 15 in-person. One of the most significant changes we had during our disparities public meeting was having Interpretation both in-person and zoom. During our English Language public meetings, we had Spanish Interpretation, and during our Spanish Language public meetings, we made sure to have English Interpretation. After every meeting, we made sure to have enough time for participants to give feedback and asked questions. Families and interested parties had the opportunity to ask questions and were able to write comments during the presentation, which we addressed during and after the meeting.
An additional component noted continues to be the inability to break down 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 regarding disparity, rather than only ethnicity. The information provided to our consumers, families, and community members was essential. 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 were asked to share experiences or concerns. 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. The Diversity, Equity and Inclusion Committee formally known as Cultural and Linguistic Committee will continue to 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 a 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 continue to face 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. Suppose consumers continue to live with their families and/or are encouraged by family inclination but are not comfortable accessing current adult services. In that case, the disparity will increase more in this area. To address this issue, we continue working with our local parent groups 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 it is that they might not be accessing services. One of the biggest concerns families currently have is that they do not understand how adult programs work and sometimes do not agree with the individual’s philosophy of independence and autonomy 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 emphasized that more education and practical knowledge are necessary for all to understand better the services currently offered, tweaks that may be needed, or services re-imagined, all with the cultural aspect included in the development.
In addition to the meetings with parent groups, VMRC is determined to learn more from adult consumers. We received a lot of feedback from the meeting with adult self-advocates on May 4th, and 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 revolve around COVID-19 and how it has affected them and continues to affect 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 significant concerns noted by stakeholders target the need for more individualization and privacy in care homes and ILS programs for transition-aged youth to enhance further skills learned in schools. Antiquated services were a topic as current services are not 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 than 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 would need to consider while seeking cultural competence and thereby reducing disparities include:
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 current process, we hope to break down the statistical information into a more understandable and meaningful format in the future.
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