The Role of Family Organizations in Reaching & Supporting Immigrant Families to Access Services Immigrant children in the US are more likely to be poor, to have health and development challenges, to live in environments that exacerbate existing disabilities and special healthcare needs, and thus to need services such as early intervention and preschool special education. Yet immigrant families, whether documented or undocumented, are frequently less likely to be aware of resources to assist their child and family or to reach out to access those resources. Further, many immigrant families fear government authority based on their experiences in their countries of origin and/or their experiences of discrimination in the US, particularly when families have one or more members without documentation. This presentation, based on our work with many diverse immigrant communities, and in particular Spanish-speaking immigrant communities, as well as an excellent guide on cultural brokers by the National Center for Cultural Competence, will summarize tips on working with family organizations to help identify, reach out to, connect with, and serve immigrant families of children with special needs in connecting families to services and in research. Presented by Mercedes Rosa, Director, Family to Family Health Information Center/Family Voices NJ @ SPAN, & Deepa Srinivasavaradan, Family Resource Specialist & Immigrant Parent to Parent Coordinator, Statewide Parent Advocacy Network of NJ (SPAN)

Questions How can we best encourage immigrant parents to get their children screened, and if screening reveals a need for follow-up, evaluated to see if their children have special needs? What are the barriers (i.e., cultural or religious beliefs, eligibility for public health insurance, affordability of private health insurance, quality of health services, when screening & evaluation services are offered vs. parent work schedules, etc.)?

Questions How can we best support immigrant parents who have CSHCN to access needed services? To partner with professionals? What barriers do immigrant families of CSHCN face in accessing needed health, education, & other support services (i.e., language barriers, cultural or religious barriers, discrimination, lack of insurance or healthcare financing)?

Questions How should our research efforts with immigrant families be the same as – or different from – our research efforts with other families? What are successful strategies to elicit information from immigrant families about their experiences, barriers, how best to help them overcome the barriers, etc.?

The Pebble in the Pond… “Do unto others as they would have you do unto them.” The Platinum Rule “Seek first to understand, then to be understood.” Steven Covey You can only understand if you truly listen – with and for the heart.                                                                                                              The old adage, “Do unto others as you would have them do unto you,” perpetuates an approach that ignores the cultural differences that impact how families from various cultures experience disability, relationships, and services. Instead, our efforts must be focused on “doing unto” immigrants families as they would have us do unto them. To do that, service providers must understand families’ strengths and needs, beliefs, and how they can best participate in decision-making about their children and access services. To understand, service providers and agencies must truly listen – with the heart, for the heart of what is important to families, where there experiences have brought them. Family organizations, particularly those with staff that reflect the larger community, can play a critical role in reaching out to and supporting immigrant families and thus helping to identify possible disabilities and special healthcare needs at earlier stages and encouraging and supporting immigrant families to access evaluations and services for their children. Family organizations can serve as “cultural brokers” with immigrant communities. This also applies to researchers seeking to solicit information and feedback from immigrant families. Using the same approaches that work with other families – on-line, in person or telephone surveys, for example – will likely not solicit honest information from many immigrant families. For example, South Asian families may not answer honestly about the extent of their children’s disabilities or special needs because of strong cultural expectations about academic achievement.

Cultural Brokers Identify partners with legitimacy with families & targeted communities. Ensure partners are representative of the community. Develop reciprocal trusting relationships Bring resources to the table Demonstrate humility Identify partners with legitimacy with families and targeted communities: The first step is identifying partner family organizations that have legitimacy both in the community of parents of children with disabilities and in the community targeted for outreach and support. It is not always the case that the state’s Parent Training and Information Center (PTI) or Family to Family Health Information Center (F2F) will have the needed relationships and expertise to work within the targeted diverse community; this must be specifically discussed. Looking to see if there is a Community Parent Resource Center (also funded by the U.S. Department of Education) that exists in your state to work with the families targeted for outreach and support (even if they are working only in one geographic area) can help you identify another possible partner. Bringing the PTI or F2F and community-based organizations that serve the diverse families you are targeting together and requiring their collaboration as part of the outreach and support effort will ensure both family competence and cultural competence. Work with the PTI and/or F2F to identify and partner with “cultural brokers,” respected members of the targeted community. (Remember that even community-based agencies aren’t always culturally competent!) It is critical that parents from the targeted cultural/ racial group are the key staff on the project. In all of our focus groups, it was clear that Spanish-speaking families of children with disabilities look for someone with the ability to speak Spanish and familiarity with at least one Latino culture first, even before an English-speaking white parent of a child with a child with their child’s specific disability. Many of the barriers faced by the targeted families arise from their cultural and linguistic unmet needs even more than the needs caused by their child’s significant disability. This is true whether you are approaching immigrant communities to provide services, or to solicit information as part of research.

Cultural Liaisons Knowledge of: Values, beliefs & practices within their cultural group Service delivery systems they have learned to navigate Family organizations that are representative of the community you are trying to serve can act as cultural liaisons. They are knowledgeable both about their own culture’s values, beliefs, and practices, and about the service delivery systems that they have learned to navigate. They can more effectively help immigrant families understand these systems because of their own experience. Because they reflect the immigrant families they are helping, they are more trusted by the families themselves. They can help the systems understand how to understand and be more effective in working with immigrant families, and they can help researchers understand how to approach immigrant families from different cultural backgrounds and countries of origin, as well as how to solicit the most accurate and detailed information from them.

Gathering Community Knowledge Communities know: Their history: where they have been Their culture: who they are Sacred places Dangerous places & topics What is important to them Family organizations can help you gather community knowledge that will be critical to you in designing approaches and programs that will meet immigrant family needs and in designing and implementing research projects and approaches that will work. Encourage and support community members to find their voice. Partnering with family organizations can also help you to be more responsive to what you hear from immigrant community members, which may be critical things that are hard for you to hear. They can also help you to respect the passion of the community for change. There is nothing that is more effective in turning off immigrant families than being defensive when you hear from families about what you need to change and being unwilling to makes those changes. Given the cultural, language and trust barriers that interfere with getting accurate feedback from immigrant families, action-based research approaches that build on trusting relationships will likely garner more accurate information than traditional surveys, even if those surveys are conducted by bilingual researchers.

Cultural Mediator Helping service delivery systems & researchers: Establish and maintain trust Build meaningful relationships Family organizations can help to ease the distrust that many racially, ethnically, and culturally diverse communities have toward service providers and researchers. Two elements are essential to the delivery of effective services as well as to effective research with underserved families: (1) the ability to establish and maintain trust and (2) the capacity to devote sufficient time to build a meaningful relationship between the provider/researcher and the patient/consumer. Working with family organizations that are representative of the immigrant families you want to reach can help you build trust with those families. Keep in mind that trust is not automatic: it must be earned and it can easily be lost. One critical component of building trust is to be honest about the problems, the barriers, the potential negative consequences – as well as the potential benefits – of screening, evaluation, and accessing – or refusing to consent to – services, or to participating in research. For example, immigrant families may fear that engagement with a government agency will expose them to possible referral to immigration authorities or the child welfare system if their cultural norms differ from those of the majority culture. Immigrant and LEP families do not always feel safe in complaining or raising concerns with government agencies, professionals, or those perceived to be “in authority.” It is critical that there be cultural brokers and other trusted people in whom they can confide their complaints or concerns. Other critical considerations for building trust with immigrant families include a commitment to “being in it” for the long haul, and not abandoning your outreach and support efforts after the first disappointment or failure. Admitting mistakes is also critical, as is asking for help. Representative family organizations can help service providers and agencies promote increased use of screening and services within their respective communities through helping you establish and maintain trust and build meaningful relationships with immigrant families. In our experience, prior to developing a trusting relationship with a questioner, immigrant families are often likely to tell the questioner what they think you want to hear, what will put them in the best light, what will have the least potential for exposing them to negative consequences. Immigrant families also are less likely to know what their expectations for their child with special needs should be, particularly if there are limited or no services in their country of origin, and thus may be more likely to respond positively to questions about how things are going, at least initially. In our experience, families who are then exposed to training, family support, and leadership development, begin to be more critical about service delivery systems. Once their advocacy and leadership skills are strong, they begin to have more success in navigating and advocating within those systems and their reports about service delivery systems reflect their greater success.

Catalyst for Change Helping service delivery systems & researchers: Recognize the barriers to participation by immigrant families Make changes to address barriers Engage immigrant families in all processes Family organizations working with immigrant families can help screening and service delivery systems as well as researchers better understand the barriers to participation by immigrant families, both real and perceived. They can work with these systems to engage immigrant families in the identification of barriers as well as in the development of action plans to build systems that are more effective in identifying, reaching out to, and engaging immigrant families. What needs to change in your outreach and education materials? Where do you need to make your services available? What community organizations should you engage in your outreach process to be sure that immigrant-serving organizations are your partners in outreach? Family organizations can also help you develop ongoing tools to learn from immigrant families whether your changes are being effective. Once we have developed trusting relationships with families from particular immigrant communities, we have elicited information most successfully through focus groups. We use the feedback from those focus groups, and from partners from the targeted communities, to shape our services and programs as well as strategies to elicit additional feedback.

Partnering for Cultural Reciprocity in Service Delivery & Research Committed Leadership from all partners Maintaining a partnership with good communication, clear decision-making, & specific responsibilities

Preparing for Collaboration Discuss with partners in advance: Each partner’s role in the collaboration How you will communicate with each other Parental consent to sharing of info What potential conflicts may exist How conflicts will be resolved Other roles of partners From the beginning of your collaboration with family organizations, it’s critical that everyone is clear on each partner’s role, how you will communicate with each other, including how you will get parents to consent to the sharing of information with each other, where there may be conflicts and how you will resolve any conflicts, and that each partner has additional roles beyond the collaboration role…so, for example, the family organization has an ethical responsibility (and if they are the PTI or CPRC, the grant obligation) to help families understand their rights in the process and what to do if they disagree with the service provider/agency or researcher.

Your Partnership Plan Quality information: Develop accurate “map” of strengths & needs of families from diverse communities –who’s important, what’s important, relationships Formal Informal Know how others have addressed these issues

Engage families from targeted communities as powerful partners from inception of your research project or program development Teaming Assessing Planning Intervening Engaging

Implementing Changes to Enhance Cultural Reciprocity Bring about changes Monitor implementation to make sure improvements take place

Our Experience Identify partners with legitimacy with families & targeted communities Be prepared to reach out beyond existing databases to identify potentially eligible families Ensure that representative staff are involved in the outreach & support effort Ask families what they need and what works for them Be flexible & determined in your outreach In our intensive work with immigrant families over the last several years, we have learned some critical lessons about how service delivery systems or researchers and parent organizations can work together to increase identification of children with special needs in immigrant families and the engagement of families in screening and service delivery systems as well as in research. You have a brief handout summarizing our lessons learned, which we hope will prove useful to you. These are some of the critical components of an effective strategy.

Our Experience Revisit your written materials to meet diverse & targeted family needs Be flexible in your activities & be prepared to change many times along the way Provide the support that immigrant families need Build a cadre of parent leaders to continue the provision of support including support of research efforts Conduct ongoing evaluation of your efforts & their impact & learn from mistakes Researchers in particular need to consider how immigrant families may respond to your written materials about the purpose of your research, confidentiality provisions, questions, etc.

Strengths-based Parent leadership development thru peer-to-peer education, support & empowerment Parents can be leaders regardless of their current situation Build leadership, not dependence Measure your effectiveness in enhancing family confidence, competence, attitudes & skills Ask families to assess your work

Information-Gathering/Research Tools Focus Group—Parent, staff Review of research materials by immigrant family leaders Surveys – developed by families, administered by families

Commitment People say, what is the sense of our small effort. They cannot see that we must lay one brick at a time, take one step at a time. A pebble cast into a pond causes ripples that spread in all directions. Each one of our thoughts, words and deeds is like that. No one has a right to sit down and feel hopeless. There’s too much work to do. Partnering with family organizations that serve immigrant communities is not the only step screening and service delivery systems as well as researchers must do to identify, reach, and engage immigrant families. But it is an essential building block, a pebble cast into the pond, causing ripples that spread in all directions and a critical first step in the work that our service delivery systems need to do to reach and serve underserved children and families and solicit accurate and meaningful information from about their needs, the extent to which current systems and services meet their needs, and what else is needed.

Questions?