What is the data telling us? PEP FOCUS GROUP RESULTS PARENT EMPOWERMENT PROJECT AUTISM SOCIETY OF LOS ANGELES APRIL 2018
PEP FOCUS GROUP RESULTS The PEP team held three focus groups with clients and their families. We received 369 responses to questions concerning barriers to obtaining Westside Region Center services.
Five Main Categories of Barriers The results showed five The five main categories are: main categories of barriers 1. Organizational Barriers faced by WCR clients and 2. Support their families. 3. Communication Each group contains more 4. Access to Service detailed subcategories, 5. Cultural Barriers which better define and pinpoint the barriers.
PEP Focus Group Data Organizational 47% Access to Services 10% 21% Cultural Barriers 8% 47% 14% Communication 14% 8% 10% Support 21%
Organizational 5% 4% Vendor Issues 4% 10% Structure 26% 27% Services 19% Service Satisfaction 6% 24% SC Support 23% Person Center Plan Approach 9% 20% 10% Cultural Sensitivity 4%
Organizational Barriers Cultural Sensitivity 1. WRC needs to hire more minority staff capable of speaking the client’s language, especially at the Community Outreach reception position. 2. Services hours are limited or not accommodating Service Satisfaction to client’s schedule. 3. WRC is not working closely enough with other agencies Vendor Issues such as school districts, medical professionals etc. to provide information for regional center services. Structure Person Center Plan 1. Families should be given more location options when meeting with SC. Approach 2. SC should meet with the whole family, not just the client. Services 3. A personal center plan approach that better prioritizes and serves the client’s individual needs . SC Support
Organizational Barriers “WRC should offer “Vendors should come social, recreational “Service hours that are into the communities to and exercise accessible to the clients provide information programs” & parents.” about their services.” “Regional should work Community with school districts to provide information Suggestions “SC should do about Regional Center more Home visits.” services.” “SC should be on time.” “WRC should have an “More individual tailored easy to read and services not a one size fits all accessible services approach.” “Monitor vendors to handbook.” ensure they are providing quality “Hire more Service services .” Coordinators so that they Regional Center should provide more have smaller caseloads and legal support for IEP’s. can have more time for each client.”
SUPPORT 5% Family 5% 17% Generic Resources 17% Motivation 5% 5% 49% Parent-to-Parent 18% Support Groups 6% 18% Workshops 49% 6%
Support Support Groups 1. Clients and families want workshops through WCR that give them a better understanding of their legal right and the services available to them. 2. There need to be workshops on diagnoses. Workshops 3. Clients and Family members would like training on how to advocate for services in order to gain a better understanding and confidence. Family 4. There needs to be technical training on navigation computers and filling out job applications online. Generic Resources 1. Support was requested in navigating and obtaining generic services such as SSI, IHSS and IEPs to name a few. 2. Clients need help in obtaining basic needs such as housing, food Motivation and transportation. Parent-to-Parent WCR needs to offer more parent-parent support, and it should be made available to all.
Support “SC’s should help encourage fathers to be part of the IPP.” “We would like more “WRC should join with support with our IEP’s .” community leaders to offer more Community community support for families.” Suggestions “Create awareness regarding the disability “WRC should have Videos that and consequences of not help motivate families, for taking action.” example, show some successful stories or other “We would like a variety of different families in the same situation workshops that could help us learn who have received services how to be better advocates.” they need and are doing much better.”
COMMUNICATION 6% Delayed 6% 31% Method 44% Style 11% 44% Providing Information 8% 8% Lack of Communication 16% 11%
Communication Methods of There need to be more communication options including: phone calls, text messages, email, direct mail or face-to- communication face meetings. 1. Clients should receive an introductory letter when Lack of communication approved for services. Additionally, a letter should be sent if there is any change to services. 2. Clients feel there should be more follow up calls. 3. WCR is not communicating vital information to the Delayed communication clients such as the need to prepare for transitional changes or when important changes occur to services. 4. The clients would like to be provided with a list of WRC staff. Style of communication 1. The clients would like to have a list of WRC resources made available to them. 2. Information should be provided such as resources, Providing Information workshops and support groups. 3. WRC should provide videos that provide information and explain services and the process for obtaining them.
Communication “SC should call 24 hours before “SC should call us the IPP meeting to remind us more to follow up they are coming.” with our request.” “SC should explain thing more clearly and make sure we understand Community everything.” “Staff should contact us Suggestions in a timely manner.” “SC should provide us with information “We should get a welcome letter regarding other resources, workshop, that gives us information about our support groups.” services”
Access to Service Childcare 7% 7% 5% Financial Harship 5% 28% 17% Knowledge 17% 5% Lack of Information 38% Technology 5% 38% Transportation 28%
Access to Service Lack of Childcare 1. Families are not given resource information that could help address their most urgent issues. Lack of Transportation 2. More community outreach needs to be provided by WRC to other agencies such as school districts, Lack of Information on medical professionals, etc. services offered by WRC/ 1. Clients are not given information on symptoms, Generic services diagnosis or disability types. Lack of Knowledge on 2. Clients do not know how to access WRC or generic resource services. how to Access Services 3. Once given information, clients still do not understand how to access services and navigate Technology systems. Feeling Overwhelmed 1. Clients don’t have access to computers or smart phones. or intimidated 2. They don’t know how to use computers and smart phones. Financial Hardship 3. They are unable to access their emails or Internet service.
Access to Services “Regional Center should help “We need more “WRC needs to us with basic needs, like food transportation provide more vouchers.” assistance.” childcare assistance.” Community Suggestions “Help us learn how “We need more to use computers, information on how to so we can access deal with crisis the website.” situations.” “We feel intimidated and “WRC should provide overwhelmed, WRC should us with more help us feel more guidance on how to comfortable.” find support groups.”
CULTURAL BARRIERS Cultral Norms 67% 10% 10% Feeling Marginalized 3% Immigration Status 10% 10% Translation 10% 3% 67% Language 10%
Cultural Barriers Language 1. Clients are not offered an interpreter. 2. There is a lack of available interpreters. Lack of Translation 3. Clients need to have all documents translated into their native language. Immigration Status 1. Some culture do not question authority; therefore, the client does not appeal or Cultural Norms reapply when services are denied. 2. Some cultures attach a stigma to disability. 3. The family does not accept disability because Feeling Marginalized of cultural beliefs. 4. Families refuse to seek service because of the stigma attached to the diagnosis.
Cultural Barriers “WRC should provide “SC’s should help encourage family counseling to fathers to be part of the IPP.” accept the diagnosis.” “Including the family in WRC to help ease Community resistance from fathers and or grand parents.” Suggestions “Having a diagnosis is a stigma for us, maybe WRC can bring awareness of the disabilities so that we don’t feel ashamed.” “Its hard for us to voice our “WRC should provide more concerns, maybe SC should follow immigration support up to help us overcome our fear of services.” not voicing our concerns.”
What can we learn from the results? Through our data analyses, we hope to find trends and possible reasons for the obstacles causing disparities. Using the results, we hope to develop appropriate strategies and tactics to help create a bridge between the WRC and their clients.
Thank You for your Support! PARENT EMPOWERMENT PROJECT PEP Main line: (424) 299-1531 Email Referrals to PEP at: pepreferrals@autismla.us Fax Referrals to: (310) 943-3175
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