Inventory Project Deliverable Paper
I have been working with Mari to develop an inventory of parent leadership and other training materials involving parent advocacy in child welfare, with the overall goal to see how we can further enable IPAN to help parents develop the best programs. The first step entailed thorough research of different curricula and the gathering of all literature gathered into a centralized drive. These materials included a wide array of research articles, website resources of different parent advocacy organizations, as well as hard copies of training manuals and handbooks from other parent advocacy groups.
Based on initial research and the availability of resources, we broadened the scope of our research in the following two ways: first we sought to expand our research to analyze other parent-led programs that were not exclusive to just parents of the alternative care system. This included other parent-led advocacy groups such as parents of children with disabilities, parents of children struggling with mental health challenges, parents of children dealing with substance abuse, teen mothers, adoption, etc. The second area was to expand the scope of our search internationally, by looking at different curricula that not only exist in the US, but also to other countries around the world to try and learn from their methodology. The aim of these two directions taken by the research is to learn from these neighboring social welfare systems and different countries, and hopefully adapt useful findings when designing IPAN curricula in the future.
This research proved to be a little bit of a challenge due to the fact that language barriers hindered access to resources that may have been useful, and there was also an added difficulty of finding organizations that would keep their resources publicly available to such a preliminary search. Nevertheless, we were still able to find some very interesting training resources, and hope that the findings from this research will be useful to parents who are currently doing advocacy work, planning or providing training and those who are considering going to other countries and making an adaptation for the same purposes.
Possible next steps to this project could include reaching out to some of these organizations in order to request access, and/or finding a translator to look into the curricula that were not available due to the language barriers.
We have found training resources on a myriad of topics. Most of them train parent advocates to be leaders, while many others are centered around organizing parent-led self-help groups and peer-to-peer advocacy support networks. Overall they can be broken down into the following four categories: handbooks and training manuals, research articles, informational articles, powerpoints/pdf/pamphlets.
(Child Welfare System Example)
First resource analyzed was a Child Dependency 101 Parent Leadership Curriculum developed by the Spokane Parent Advocacy Network (link to the resource here: https://drive.google.com/file/d/1sOJAS3ByGxZDMwdInp6ZR8SMEdHZBsos/view ). This Handbook served as a guide for an informative class for parents involved in child dependency and covers several contents. The first part of the curriculum walks through the roles of the various legal professionals that will likely be involved in the case as well as a thorough explanation of the legal process that takes place. What we found to be particularly useful from these contents of the resource were the way the information was presented in a visual and easy to follow format. The author used graphics (in this case, puzzle pieces) to illustrate the legal process as a puzzle that comes together as a whole. This breakdown makes each individual step easier to understand, as well as helps the overall process seem less daunting and more accessible for parents to take on. The handbook then goes on to cover the translation of legal jargon through these child cases, roles and goals of Family Team Decision Meetings (FTDM), funding resources and services, paths to success, parent rights and responsibilities, visitations with children, understanding of parent emotions, and parent veteran journeys.
What makes this curriculum a little different than others that we found when looking at parent advocacy leadership within the American child welfare system was that the Handbook included information on how to navigate common emotions (anger, denial, depression, acceptance, etc.) that parents may be feeling when moving through these welfare cases. This not only helps families understand their own feelings but can help reframe thoughts which can greatly help set them up for success when confronting the system through the next several steps. Having the right mindset can make a big difference in inspiring action and being prepared to do the most in one’s power to achieve the best case outcome. Lastly, sharing parent veteran stories was a great component that allows parents to connect with other families and envision similar successes for their own cases.
(Alternate Care Resource Example– Mental Health)
A research article in the Elsevier Journal, Voices of parent advocates within the systems of care model of service delivery, analyzed “Tapestry–” Cuyahoga County’s systems of care initiative in Ohio for children’s mental health, which was set up as a partnership between county child-serving systems of care and neighborhood provider organizations (Cuyahoga Tapestry System of Care, n.d.) (link to the resource here: https://www.sciencedirect.com/science/article/abs/pii/S0190740909000826?via%3Dihub ). They conducted focus groups with parents advocating to examine how they themselves perceive their role within the systems of care model of service delivery, and the research team was able to identify several consistent themes from the focus group transcripts. These themes included: the unique role of parent advocates; similarities and differences between advocates and care managers; and, the value of having personal experience. Of the unique roles of parent advocates, it was found that some of the most important were translating the jargon of the system, translating policy and paperwork, and streamlining communication to be better. In addition, navigation and empowerment were also found to be unique roles. After surveying and interviewing both parent advocates and parents receiving support of the advocates, it was found that parent to parent support programs successfully reduced anxiety, highered levels of perceived social support, increased confidence and access to services, provided a sense of relief when allowed to talk openly about family experiences, reduced feelings of loneliness, and supported the phenomenon that the education process about mental health in adolescents is mutual between parents and providers.
Peer advocacy is found to greatly reduce caregiver strain by providing a support person that has been through similar experiences. These relationships can assist in decreasing difficult emotions, such as shame, guilt and embarrassment that can be associated with children getting in trouble with the school, the community, or law enforcement. A person to compare their situation with and find support from also can decrease the isolation that parents often describe accompanying raising a child with emotional difficulties. Findings from the paper suggested that veteran parents bring information, empathy, and connections to the community, which are important types of support for parents raising children with emotional difficulties. It was also found that the role of parent advocates can be strengthened by clarifying their contributions to service delivery, the key contributions being: communicating to family members in ways professionals cannot; component of personal experience very important in forming a bond; and navigators for families in helping them understand the system and access traditional and non-traditional systems.
Lastly, parents attending these support groups in the Cuyahoga County’s systems of care initiative, reported a greater need for information and services, along with increased service use. A review of family peer advocacy programs suggests that there are other models that likely increase access to care, such as the Kansas model in which family peers explain care options and interpret policies and regulations for families (Osher, deFur, Nava, Spencer, & Toth-Dennis, 1999).
(International Resource Example– Ghana)
Another interesting resource we found was a Self-Help Kit for parents/caregivers of children with intellectual disabilities in Ghana (link to the resource: http://inclusion-ghana.org/resources/brochures/Self%20Help%20Kit.pdf ). The manual was created by the organization, Inclusion Ghana as a discussion guide for parents/caregivers to support the formation of Parent Self-Help Groups (PSHGs). It takes on a storyteller format, following five different fictional families and presenting their individual cases for the reader to understand. Formatting the curriculum through narratives in this way, allows readers to recognize life conditions, opportunities, challenges, and feelings they may be experiencing in their own lives, thus illustrating how families can then come together to work and support one another.
Components of the manual covered an array of thorough information. First and foremost, the resource went over how to form a PSHG– what it is, how to recruit members, how to set up meetings, deciding meetings topics, choosing leadership. Other focus areas included community life; feelings as a parent; development and health; experiences of abuse; school; tips on how to care for the child (can be translated to tips on how to make parent visits successful) taking a child perspective, social activities, group projects, awareness raising and advocacy. Particularly useful components were the walkthroughs of potential challenges and corresponding conflict resolution, as well as the inclusion of professionals of the care system coming to speak with members of the PSHGs. A health professional provided information on intellectual disability while a legal professional was invited to educate and clarify legal rights of both children and their caregivers in these circumstances.
This manual was an international resource of particular interest because it speaks out against the deep-rooted cultural stigma and challenges faced by parents and caregivers of persons with disabilities in Ghana. Many families will hide their children, and most are very reluctant to take a stand against the discrimination and abuse experienced by these families. By creating such a guide to support the formation of PSHGs, Inclusion Ghana has not only offered these families direct support in navigating their struggles, but has also successfully raised awareness against the stigma and poor knowledge of intellectual disabilities in the country. This is key to the grassroot efforts in Ghana and provides a resource for ongoing support and training, while making progress towards systemic change.
We can learn from this curriculum in several ways. First, using a narrative format allows a greater reach across different populations. We can combat language barriers and provide an easy to understand approach to families of different backgrounds. They also communicate better emotional appeal and inspiration to action. Secondly, walking through each meeting, and setting up the guide as a self-starter kit allows communities to form leadership and support groups for themselves from the bottom up. This can be very powerful to families and caregivers in child welfare cases as well if we were to translate a similar application. Lastly, incorporating social activities, development and health sessions, and awareness and advocacy building into the curriculum, takes on an interdisciplinary approach which allows everyone to find support in different ways that may be best suited for them. Providing alternative resources to create a holistic support program can effectively bring individuals to action and inspire further systemic change.
Overall, an analysis of all the different curricula and articles can provide us with helpful information on how to develop future training materials and perhaps adapt them across different populations, countries or platforms. Almost all resources emphasized the great benefits of having parent advocate leaders guide families through welfare cases and provide support in a multitude of ways. The need for education on the particular welfare system at hand, individual cases, and translation of legal jargon were found absolutely necessary and should be included in all curriculums. Another universal key component included in all training materials was a list of other resources that families can access and connect with for further support. However, in addition to these basics, several other components such as navigation of emotions, provision of narrative case studies, and visual graphic design elements all enhance materials in different ways. Some curriculums also connected families to non-traditional support services such as art and recreation that were found to be very helpful in empowering parent advocates and promoting leadership development.
Based on all the research materials we looked at, we would suggest that IPAN take into consideration some of the successful methods when designing further parent advocate leadership training curriculums. A couple of ways to look into adaptation of curricula across countries would be to implement a narrative case study type format within training materials as well as use of graphics to help assist with possible language barriers. It may even be helpful to have advocates sit in with parents during their case meetings or other important conversations, if possible. Alternative support resources such as the incorporation of social activities and connection to art and recreation can also be possible avenues to further expand. A mixed methodology can best contextualize based on the audience and the characteristics of the situation during a curriculum design process.
References
“Advanced Parent Leadership Training ” Nami Virginia.” NAMI Virginia, 27 Aug. 2021, namivirginia.org/advanced-parent-leadership-training/.
Child Welfare Organizing Project. (2008). A PARENT LEADERSHIP CURRICULUM: Developing the Potential of Parents as Advocates, Organizers, and a Positive Force for PUBLIC CHILD WELFARE REFORM.
Circle of Parents. (2004). How to build a state network.
Horn, J. P. Parent Peer Support Programs in In-Home Services. National Resource Center for In-Home Services.
Inclusion Ghana. Forming and Maintaining a Parent Self Help Group: A discussion guide for parents / caregivers of persons with intellectual disabilities.[kit].
Munson, M. R., et al. (2009). Voices of Parent Advocates within the Systems of Care Model of Service Delivery. Children and Youth Services Review. 31(8), 879–884. doi:10.1016/j.childyouth.2009.04.001.
Park, J., Kosterman, R., Hawkins, J.D. et al. (2000). Effects of the “Preparing for the Drug Free Years” Curriculum on Growth in Alcohol Use and Risk for Alcohol Use in Early Adolescence. Prev Sci 1, 125–138. https://doi.org/10.1023/A:1010021205638
Positive Powerful Parents Self Advocacy Group & Self Advocacy Resource Unit (SARU). (2019). Self Advocacy and Safe Storytelling: a guide for organisations
Spokane Parent Advocacy Network. Child Dependency 101: An informative class for parents involved in child dependency.
Woods, E. R., et al. (2003). The Parenting Project for Teen Mothers: The Impact of a Nurturing Curriculum on Adolescent Parenting Skills and Life Hassles. Ambulatory Pediatrics. 3(5), 240–245., doi:10.1367/1539-4409(2003)003<0240:tppftm>2.0.co;2.