Issue 48 | Parents as Consumers

Convergence of diverse parents and children
Credit: Photo courtesy of Google Images

Consumer…as we know it is someone who expresses a want or need and seeks out specific entities who have the product or services for that want or need. In exchange for that product or service, a consumer provides the monetary means to purchase that product or service, and if satisfied they welcome purchasing relationships with those merchants. Apple, Uber, and Amazon, have morphed into suppliers who administer products that are readily available and satisfy the needs and wants of their consumers. But what if we consider this ideology of consumer and make it applicable to both education and human services? What if we take a look at a special group of people, such as parents, who expect both of these institutions to compensate the needs and wants and not just be treated as another case number? What would it be like if parents could buy into education and human services and expect to get a return on their investment? Treating parents as consumers in both education and human services can help establish stronger and more respectable relationships between both suppliers and parents, and have a greater possibility of positive outcomes for both families and institutions. 

One of my roles as a practitioner in Adult Education at the Center for Literacy that I most valued was facilitating a class in the family literacy program. Initially, the Family Literacy program goals were to make sure parents were equipped with the specific skills and tools so they would be able to read to their children (especially encouraging those with children in early childhood education) and assist them with homework and project assignments from school. But it became much more than that. As I became more involved in my practice with my learners, I began to see gaps. Not only in their literacy levels, but in the services and other resources they could have been invested in to make them more functional and productive. They possibly weren’t aware of these services and resource because in the past they hadn’t been treated as a person, but instead were treated as a case number. Poverty, domestic barriers, and health-related matters played a significant role in how my learners were or were not able to progress in my class. Unfortunately, parents who came from generational at-risk programs have always been treated by educational and human service organizations as more of a liability, in contrast to being an investor who is trying to improve the quality of life for themselves and their family. Parents often discussed with me and their peers how they felt like they didn’t have a voice or choice in getting their needs met in order to have products and services to improve the quality of life for their family. 

How can these institutions who provide education and human services not only act as a collective dynamic to treat parents as consumers and not obligations. but to incorporate participation and relational connections with parents to get the best outcomes from products and services when utilized by families? In a research study conducted by The Journal of Special Education entitled “Family-Centered Practices: Birth Through High School (Dunst 2002)” describes both relational and participatory components as essential for educational and human service programs to implement and accept when providing services to the parents and family. The relational component includes practices typically associated with (a) good clinical skills (active listening, compassion, empathy, respect, being nonjudgmental, etc.) and (b) professional beliefs about and attitudes toward families, especially those pertaining to parenting capabilities and competencies. The participatory component includes practices (a) that are individualized, flexible, and responsive to family concerns and priorities, and (b) that provide families with opportunities to be actively involved in decisions and choices, family–professional collaboration, and family actions to achieve desired goals and outcomes. 

Human Services is defined as a profession which promotes improved service delivery systems by addressing not only the quality of direct services, but also by seeking to improve accessibility, accountability, and coordination among professionals and agencies in service delivery (nationalhumanservices.org). These efforts in collaboration with educational institutions, can work in conjunction with each other to treat and view parents as consumers and get the best possible results from both sides of the spectrum. Although both establishments work in their own separate spaces, it would be more valuable for them to work as a unit to address the needs, wants, and expectations of parents in order for outcomes to be addressed and met. Historically, health and human service organizations were largely autonomous and disconnected from one another. A number of factors influenced this condition, including federal categorical funding; state-enabling legislation, which created distinct agencies; educational institutions and licensing organizations that support separate career and professional development paths; and funding limitations or program design, which discouraged benefit use (O'Leary and Mason 2011).¹  

In the Children and Youth Services Review Journal, a great research perspective is provided on how programs can be more effective through this different approach. “Specifically, we review evidence that parenting programs may reach and engage more families if services are 1) led by fellow community members to align with cultural norms and multiply opportunities for service provision; 2) embedded in key settings such as homes and schools with flexibility to bridge settings; 3) aligned with the goals and needs of those settings, and bundled with other services to address families' pressing needs, thereby taking a “family-centered” form; and 4) offered through multiple formats, from traditionally formatted sequenced curricula to informal conversations infused with core parenting principles.” Service providers need to move away from the desk and paper-pushing of case management, or viewing each family as a number and liability or the children as just “at-risk” to more fully engage the parents. Engaged parents are informed and serviced with the best resources to empower them to be fully invested as members of of society who reap the benefits of employment, education, and life-long productivity. 

A current in-depth conversation with one with of my former ESL family literacy students (who wishes to remain anonymous and has children enrolled in one of Philadelphia’s community schools) admits. There is still a lot of work to be done with establishing relationships between schools, human services, and parents. While she appreciates the communication established in the school between staff and parents, she is hopeful “there can be a bridge connecting human services to the school and the parent”. She expressed how she wished her thoughts and suggestions about what she needs for herself and her children could be acknowledged more since she does receive specific assistance in helping her provide for her family. “I wish someone could explain what is on the applications my case worker gives me. There may be more that I can get, while I am trying to better my English to get a job.” 

As she is not the only parent who has expressed this challenge, a number of parents who I have served who were at-risk, poverty stricken, and low-literate or non-native speakers, have been treated, and at times told, by both educational and human service organizations, that their point of view had no value or that they lacked knowledge in the decision they needed to make for their families regarding the quality of the services being rendered. Therefore, leaving the importance of parents’ engagement to just the confinement of the traditional structural input/output of such multifaceted systems. To move from customary design of education and human services to a more parent/family-centered approach will take the collective support and action of our community, educational, and political leaders. 

Without treating the parent as a consumer and welcoming a new design to services and education as collaborative, services will be left to a one-sided dimension supply unit. 

Better service design is one of the keys to improving how we address societal issues. 

As many of these societal issues have an open, complex, dynamic, and networked character, the service systems we implement to address these issues tend to have a complex character as well.² Organizations and educational systems have a responsibility to be adequate and devoted in treating parents as investors in these services and to also collaborate with parents to improve the products which are provided based on want and need and established alternative and additional commodities that will address challenges and give families a chance at an improved quality life.  

Author bio 

Mary L. Wilson holds the position of both Adult Education Practitioner and In-House Professional Development Specialist at the Center for Literacy. She joined CFL in 2010 as a tutor volunteer and became a member of the staff in 2012 as an instructor of Adult Basic Education and Family Literacy. In 2014, Mary advanced to her current role. She is also a member of the Pennsylvania Association of Adult Continuing Education and served as chair of the Family Literacy Division of PAACE from 2015-2016. Mary holds a Bachelor’s in Journalism from Temple University and a Master’s Degree in English/Writing Studies from Saint Joseph’s University.  

Works Cited

Atkins, Marc S, and Davielle Lakind. 2018. "Promoting Positive Parenting for Families in Povert: New Directions for Improved Reach and Engagement." Children and Youth Services Review 34-42.

Bijl-Brouwer, Mieke van der. 2017. "Designing for Social Infrastructures in Complex Service Systems: A Human Centerd and Social Systems Perspective on Service Design." The Journal of Design Economics and Innovation 183-192.

Dunst, Carl J. 2002. "Family-Centered Practices: Birth Through High School." The Journal of Special Education 141-149.

O'Leary, William, and Elisabeth Mason. 2011. "Improving Health, Human Services, and Education Outcomes and Reducing Proverty." Care & Benefits Coordination - Microsoft and Single Stop USA 4-12.

Reddy, Venkat. 2018. "Involving Families in Service Redesign." Paediatrics and Child Health 100-102.

¹ (O'Leary and Mason 2011)

² (Bijl-Brouwer 2017)

In the summer of 2015, a determined group of individuals with no prior media or legislative experience accomplished a historic feat, the largest successful grassroots advocacy effort ever mounted in the State of New Jersey on behalf of the state’s developmentally disabled community. The individuals were virtual strangers of varying ages and backgrounds, whose fundamental, and often only, commonality was a developmentally disabled child or sibling living in a residential facility outside of New Jersey. Nevertheless, these individuals advocated tirelessly together to persevere against unimaginable odds and defeat an ill-conceived program being promoted by a largely autocratic gubernatorial administration against their disabled loved ones. Together, these individuals changed the lives of hundreds of New Jersey’s developmentally disabled residents for the better, demonstrating to themselves and others the power of advocacy.

In 2010, shortly after being sworn in as the Governor of the State of New Jersey, Chris Christie decided he would aggressively pursue a program that would affect close to 1,000 of New Jer-sey’s developmentally disabled residents. The program, called the “Return Home New Jersey” initiative (RHNJ), had been quietly adopted -- but never enforced -- by Governor Christie’s pre-decessor. The goal of the program was seemingly simple: relocate all of New Jersey’s develop-mentally disabled adult residents residing in out-of-state facilities to in-state group homes. The rationale publicly given for RHNJ was threefold: (1) to help address, at least in small part, New Jersey’s recurrent budgetary shortfalls by saving millions of dollars annually (as New Jersey’s in-state residential placements, in contrast to its out-of-state residential placements, would par-tially qualify for federal Medicaid reimbursement); (2) to improve oversight of those develop-mentally disabled residents living out-of-state; and (3) to enable greater geographic proximity of those residents to their families. Governor Christie assigned enforcement of RHNJ to New Jer-sey’s Division of Developmental Disabilities (DDD), the state agency responsible for assisting New Jersey’s developmentally disabled adult residents with residential and day programming; and, almost immediately, DDD quietly began the process of notifying families, a few at a time, that their disabled loved ones would be relocated in-state. 

While some families perhaps welcomed the relocation news, most did not; a majority of the fam-ilies affected by RHNJ opposed it immediately. Those families realized that the resulting disrup-tion to their loved ones’ lives from the relocations would be profound. Furthermore, they knew that the physical, intellectual, and emotional frailties of their disabled loved ones, together with the uniqueness of their underlying disabilities, necessitated a residential program with housing options as extensive as their conditions. They knew that promoting a one size fits all residential program like RHNJ would be doomed to failure, as the vast intellectual, physical, and emotional needs of New Jersey’s disabled community could not be met with a single residential model (i.e., a group home). Understandably, those families were further frustrated that their disabled loved ones were forcibly being stripped of a right most Americans take for granted: the freedom to de-cide where to live. As a result, the families teetered in and out of despair regularly, horrified that DDD was aggressively pursuing these mandatory relocations with little, to no, regard for the health, safety, and well-being of their disabled family members. It was out of that despair, how-ever, that these families realized the necessity of organizing themselves to resist, and, if possible, to defeat, RHNJ.

Organizing hundreds of families spread across New Jersey (and, in a handful of cases, other states, due to family relocations over the years) was not easily accomplished. Several hurdles stood in their way. First, the families of loved ones resided at more than 30 out-of-state facilities throughout the United States, including states as far away as New Hampshire, Texas, and Wis-consin. In addition, the identities of those facilities were intentionally kept confidential by DDD (until a legislative request mandated their disclosure in early 2015). Further, the families were largely unknown to each other, including families whose loved ones were residents at the same facility, because HIPAA and other constraints ensured, for better or worse, their loved ones’ pri-vacy. Nevertheless, one family ultimately decided to start an email group to educate families about, and discuss strategies to combat, RHNJ. By word of mouth, and over the course of several years, that email group grew exponentially in size, eventually reaching more than 100 families.

Once the families were in contact with each other, they began to organize themselves to push back against RHNJ’s mandatory relocations. The lawyers in the group, only one of whom actual-ly practiced disability law, started a separate email group dedicated to identifying and assessing the group’s legal options; and they also educated and answered the families’ questions about a myriad of topics, including state and federal disability laws, federal Medicaid residential place-ment reimbursement, and guardianship issues. Families with media contacts began to cultivate those contacts and educate the media about RHNJ, granting interviews whenever requested. In addition, the families organized themselves by legislative district and embarked on systematic outreach to their legislative representatives about the detrimental impact RHNJ would have on their disabled loved ones. Ultimately, the families’ increased legal knowledge, media presence, and legislative outreach led to several meetings with certain members of Governor Christie’s cabinet (including the commissioners of DDD and the Department of Human Services) and also prompted legislative hearings on RHNJ.  

In those meetings and hearings, the families were able to undermine RHNJ altogether, by negat-ing the three bases that Governor Christie’s administration had proffered in support of RHNJ. The families demonstrated that little to no cost savings would result, or, in some cases, greater expense would accrue, upon relocating New Jersey’s out-of-state developmentally disabled resi-dents in-state. Notwithstanding partial federal Medicaid reimbursement of the state’s placement costs; the families dispelled the notion that greater oversight of their disabled loved ones would be achieved by DDD following relocation, as DDD had regularly failed over the course of sever-al decades to oversee most, if not all, of the more than 100 individuals at the largest out-of-state provider fewer than 10 miles from DDD headquarters. The families also showed that the in-state group homes being proposed for their disabled loved ones were often further away, and some-times more arduous to travel to (a significant concern for aging family members), than their cur-rent out-of-state facilities. Perhaps most importantly, however, the families publicly demonstrat-ed the sheer inhumanity of RHNJ, by publicizing case after case of the unthinkable: DDD trying to move disabled residents on hospice; DDD trying to move disabled residents with advanced dementia; DDD trying to move disabled residents from the only homes they ever knew; and, DDD trying to move disabled residents who had happily resided out-of-state for decades -- often between 30-60 years.  

Eventually, after years of tirelessly campaigning against RHNJ, the families succeeded in getting two separate bills passed by the New Jersey Legislature that would severely limit or completely curtail RHNJ. Unfortunately, the first languished, and Governor Christie vetoed the second. However, with media and legislative attention squarely focused on the inhumanity of RHNJ and the families’ continued pressure to disband RHNJ altogether, key legislators -- including, surpris-ingly, some from Governor Christie’s own party -- ultimately decided to attempt a veto override. While the override narrowly failed, it was nevertheless, a victory for the families, as Governor Christie was clearly losing the support of legislators within his party and his record of never hav-ing a veto overridden was jeopardized. Shortly after the attempted override, Governor Christie agreed to meet personally with a few of the families, presumably feeling the increased media and legislative pressure to curtail RHNJ. During the meeting, which included key legislators and DDD officials, the family members advocated against RHNJ; and, much to their surprise, Chris-tie heeded their advocacy and suddenly announced that mandatory relocations under RHNJ would no longer be pursued against a family’s wishes. Additionally, and much to the amazement of the families present at the meeting, Christie called for legislation to be passed which would protect the families from any future, compulsory relocations of their disabled loved ones from their out-of-state homes. Simply put, RHNJ ended as quickly as it began -- in a moment -- and the families were assured that no future relocation program would ever be pursued with their dis-abled loved ones.

In attaining the victory, they had sought for so long, the families learned an invaluable lesson: advocacy works, but unwavering determination, perseverance and courage are essential to its success. In emotionally charged situations, like that involving RHNJ, determination, persever-ance, and courage are not easily maintained over long periods of time. Having more than 100 families in the group helped tremendously, however. When one family’s energy was depleted, which inevitably happened for every family involved from time to time, another family was ready, willing, and able to continue the fight -- to meet with legislators, contact the media, and attend and testify at legislative hearings. The families’ incredible support for each other through-out the entire process was, in large part, the reason for their success -- they enjoyed strength in numbers and they rallied each other when needed. Given the emotional journey the families took together, it is not surprising that they remain close to this day and their email group remains ac-tive. Undoubtedly, the families who fought against RHNJ are a testament to the power of advo-cacy.

Summary

One hundred percent of students will grieve and face adversity. Very few students, though likely none, will receive education on this complex and contradictory emotional response that permeates life. Grief is a response to adversity, and therefore the catalyst of many risk factors. However, supportive and responsive environments mitigate the majority of risks associated with grief, necessitating education that promotes prevention and emotional agility. Schools are chief among the critical places that influence a child’s outcomes and resilience. In order to promote more resilient environments, Good Grief, Inc. is mobilizing its greatest ambassadors to change our dysfunctional culture and promote grief resilience curriculum: grieving parents. 

Article

Grief is normal. It’s a part of being human and it serves an important role in how we process and respond to life’s hardships and adversities, including death. Grief does not discriminate and it effects every race, culture, age, and demographic. In our experience, the majority of adults, however, struggle with talking about grief and loss to children. Most do not know how to adequately and meaningfully meet children’s psychosocial needs after a child has experienced the death of a loved one. Few know the route towards a child’s resilience. Instead, most respond to children and teens with clichés and euphemisms rather than honesty, education, empathy, and surrounding them in a supportive environment. 

Parents of grieving children have a different perspective than their peers. They experienced a devastating loss and are often hyper-focused on their child’s emotional well-being. These parents know firsthand that the death of a parent or sibling exposes their child to risks such as isolation, bullying, toxic stress, obesity, and much more.¹ As a result, Good Grief has mobilized its grieving parents to help better fulfill its mission.

For the past 14 years, Good Grief has provided support to grieving families, advocated for the needs of children, and provided education to professionals working with children and families. Over the years, schools have invited us to present our educational content to faculty and administrators. Most invitations come after the death of a student or teacher, sometimes a parent, and on rare occasion, a suicide. Intervention after a death is important work. But, changing a dysfunctional culture that promotes unhealthy responses to grief requires prevention well before an intervention is needed. 

In 2015, Good Grief reviewed the literature on childhood bereavement and launched The Whole Child Initiative.™ We concluded that a comprehensive, 360 degree approach to prevention is the best way to support grieving children. One challenge has been education. While many excellent administrators and teachers understand the need for grief and resilience training and eagerly work with us to provide it to their students and faculty, others prefer to pretend that death won’t strike their population -- of course, until it eventually does because it always does -- and many prefer to broach this subject after a tragedy. From our experience, this fear is simply because a comprehensive, digestible, and non-threatening curriculum has not previously existed. Few tools have been provided to meet educators’ needs, help them see grief differently, and ultimately teach resilience. But, that’s about to change and Good Grief parents are helping lead the way because they know their children’s health is at stake. 

Parents within our program understand that when little Timmy returns to school after the death of his father, he will have diverse needs. 

A grieving student needs a consistently supportive and responsive environment; something that cannot be built overnight in reaction to tragedy. Education and resilience need to be developed well before death arrives. Research supports the need for prevention by identifying four areas where grieving children are most vulnerable: 1.) home, 2.) community/culture, 3.) peer-group, and 4.) school.² In other words, grieving children are vulnerable everywhere because their environment shapes their outcomes. From Good Grief’s vantage, the most urgent opportunity to develop their resilience is at school -- the environment where a child learns and plays. 

While piloting of our curriculum, Routes to Resilience, 78 percent of students said they experienced grief through some form of adversity and no students reported any education provided to them on grief. Given that grief is a universal component of the human condition, there is a very real and apparent gap in education on the language, knowledge, and coping strategies necessary to prevent unhealthy outcomes after experiencing grief and loss.

Grief changes a child’s worldview. It changes a parent’s perspective, too. This new reality encourages parents to get resources to both their children’s peers and teachers because parents can see that both impact resilience. Our advocacy efforts simultaneously support these pursuits. In order to educate the adults in the lives of children, Good Grief collects the names and contact information for our participants’ teachers, administrators, coaches, clergy, and other relevant adults. Quarterly, we send educational materials to these constituents, knowing that they play a direct role in Good Grief’s success with children. Additionally, our resources help develop a partnership between parent and teacher because, as a third party, we have provided them with the tools and opportunities to be involved in the dialogue about the child. As the connection between parent and teacher grows, fear decreases and our parents are able to encourage teachers and their boards of education to implement Good Grief’s curriculum. 

By giving the parent tools to advocate for their child and other children, Good Grief is also giving parents an opportunity to make meaning out of their grief and take control of their situation during a chaotic and disempowering time in their lives. Similarly, we are personalizing a subject that so many Americans avoid or are not equipped to address. 

Seed money from two family foundations made the pilot and preliminary implementation of our curriculum possible. While our programs are free of charge to our families, the cost of implementing the curriculum, coaching, and training is $10,000 per school. Most schools, of course, cannot afford this necessary investment. 

Unfortunately, the message and data around childhood bereavement, grief, and resilience has not been adequately amplified. As a result, the risk factors grieving children and their families face are not on the radar of most foundations, including ones with a focus on health, children, or education. Our culture’s dysfunctional response to grief is imbedded in who we are as a people and the decisions we make from education to philanthropy to wellness. By not providing children with resources, we are not providing them with the tools they need to be more resilient. We see our work at Good Grief, in part, as taking responsibility to amplify this information and educate our schools and communities on the need and importance of this work.

What happens in childhood affects adulthood. We know that supportive relationships and adaptive skills are needed for resilience, but supportive relationships require informed peers and teachers. Resilience is built, not inherited, but we are short the necessary mechanics -- in the form of funders -- to rebuild the engine. While grief and loss are not preventable, the risk factors can be upended with the proper education and support. Luckily, Good Grief knew to empower its parents, who have a powerful and personal story to tell. Good Grief’s families are adapting to life after loss and demonstrating not only the urgency of the need, but are acting as role models for what is possible when support and education are adequately provided: resilient parenting, adaptive coping skills, and the normalization of grief itself. This is the route to resilience for children and parents alike. 

¹ Akerman & Statham, 2014; Center on the Developing Child, 2007; Gaffney, Kaplow, Layne, & Primo, 2016; LaFreniere & Cain, 2015a; Layne, Briggs, & Courtois, 2014; National Scientific Council on the Developing Child, 2005/2014; Shonkoff, 2012 

² Knudsen, Heckman, Cameron, & Shonkoff, 2006; National Scientific Council on the Developing Child, 2005/2014; Shonkoff, 2012, p. 17303 

Contemporary understanding holds that childhood hearing loss is a neurological emergency that has a deleterious impact on a baby’s brain. Consistent auditory stimulation provides the underpinnings for growth of the auditory cortex. Beginning at four months in the gestation period, the ability of the auditory cortex to function and flourish is contingent upon sensory stimulation. Hearing loss of any type and degree interferes with the “doorway” of getting sound to the auditory brain centers. (Cole & Flexer, 2016) Technological advancements in hearing aids and cochlear implants afford greater opportunity than ever for children with hearing loss to develop spoken language. Technology alone, however, is nothing more than hardware without appropriate interventions. When the intent of intervention is development of listening and spoken language, parents need guidance and coaching to maximize technology usage for the children with hearing loss in order to overcome impediments to auditory brain access. The ear is merely a doorway to the brain, the true organ of hearing (Cole & Flexer, 2016). 

Hearing loss affects 12,000 children born in the United States each year, making it the most common birth defect. Approximately three in 1,000 babies are born with permanent hearing loss (Ross, et al., 2008, Rousch & Kamo, 2014). Approximately 92 percent of children with permanent hearing loss are born to two hearing parents, while an additional four percent are born to one hearing parent and one parent with hearing loss (Gilliver, Ching, & Sjahalam-King, 2013; Madell, 2014a; Mitchell & Karchmer, 2004). To summarize, 96 percent of children born with permanent hearing loss are born to parents where at least one parent does not have hearing loss. These statistics are relevant in that they highlight a significant reality in educational practice for children with hearing loss: most children who are deaf or hearing impaired are born to, and reside with, families who are likely to initially be ill equipped to address the complexities of parenting a child with a communicative disability (Nicholson, et al., 2014). Nicholas and Geers (2013) note that the vast majority of families whose children are deaf or hearing impaired desire that their child will learn to learn to listen and speak as they do. Accordingly, for parents of children who are deaf and hearing impaired, the urgency of becoming engaged cannot be overemphasized. When a child has a hearing loss, it is crucial for families to provide purposeful, consistent, and enhanced linguistic input in order to mitigate the impact of the auditory deprivation. Decades of education research suggest that as parents become more involved and empowered in the special education process, outcomes for their children improve (Hoover-Dempsey & Sandler, 1997; Ferguson, 2008; Fish 2008; Stoner et al., 2005). This knowledge underscores the importance of effective collaboration between parents and educators (Goodall and Bruder, 1986; Epstein, 2001). Fish (2006) emphasizes that educators should seek and use parental knowledge, because no one knows a child better than his or her own parent. 

The parents’ journey into the world of supporting a child with hearing loss can be equally difficult, tumultuous, and wrought with opportunities for discouragement. Caught amidst feelings of anger, guilt, and self-doubt, parents begin their journey to determine what they can do to ensure that their child will develop into an independent adult with identity reflection underpinnings of self-esteem and confidence (Luterman, 2003, p.53). Parents are hurled head first into an ocean of acronyms and advocacy, and are expected to function collaboratively within a system that requires trust and connections, to best serve their child’s needs. Typically, parents struggle to decipher medical jargon in an attempt to discover how to best care for, raise, and engage their child. This struggle is compounded by the necessity of evaluating information and weighing possible outcomes in the use of assistive technologies, modalities of communication, and choices in education and habilitation (DesGeorges, 2003; Kurtzer-White & Luterman, 2003). In order to make these difficult decisions with educated choices, parents need accurate, non-biased information regarding communication methodologies and school placements, as these choices set the lifetime trajectory for their child (Madell, 2014a). 

The initial shock to the family unit is significant and well documented (DesJardin, Eisenberg, & Hodapp, 2006; Sass-Lehrer, 2002; Zaidman-Zait & Jamieson, 2007; Zaidman-Zait & Most, 2005. According to Sheetz (2004), once hearing parents have confirmed that their child has been diagnosed with hearing loss, they alternate between feelings of pain and disbelief. Luterman (2003) poses that the diagnosis of a hearing impairment is a loss that must be grieved. The abrupt shift in dreams for a parent is real, as parental dreams most likely do not include a child with disabilities. There is, then, a perceived loss, which Tanner (1980) equates to a death in the family, and, as Kubler-Ross (1969) emphasized, there is a great probability of anxiety to manifest in the face of loss. This probability is further exacerbated for parents facing the challenges of raising a child with disabilities, given the chronic and recurring nature of episodic grief. 

This small study, which occurred in southeastern Pennsylvania, adds to the body of research that involves family engagement, with a specific emphasis on parents of children who are deaf or hearing impaired. The findings and interpretation of data suggest that practices to facilitate family engagement have been experienced and are appreciated by participants who are served by this regional service agency. The purpose of the study was to identify facilitative practices and obstacles to family engagement as reported by parents of children involved in a hearing support program in a regional service agency. Qualitative methods were employed to analyze responses to a research protocol based on family engagement research practices. The study was based on the assumption that the delineation of factors that facilitate or impede family engagement could ultimately serve to support outcomes for children who are deaf or hearing impaired.

The study used a phenomenological approach to address the research questions: 

What do parents of children who are deaf or hard of hearing cite as facilitative practices toward their engagement in the special education process?

What do parents cite as obstacles to their engagement in the special education process?

Participants were selected based on their response to a poll of the larger population of parents of children enrolled in the hearing support program for a single regional service agency in southeastern Pennsylvania. These children have deafness or hearing impairment as the primary disability listing on their Individual Education Plans (IEP). Interview participants represent a selected subset of the overall population of parents of children who are deaf and hearing impaired. They have children who receive hearing support from the regional service agency. All of the children receiving support use amplification (either hearing aids or cochlear implants) and communicate through listening and spoken language. The children ranged in age from five to 19 years old. The children were diagnosed and fitted with amplification as young as six weeks and as old as six years of age. The youngest of the participants’ children had recently entered kindergarten, while the oldest was an entering college freshman at the time of the interview. Of the nine total participants in eight interview sessions, two were fathers, six were mothers, and one was the grandmother of a child who is deaf or hearing impaired. These participants represent eight of the 13 diverse school districts comprising the regional service agency where the research took place, each of which has a distinctive culture, geography, and socioeconomic climate. 

Process

This phenomenological study centered on the subjective experiences of the participants (parents of children with hearing loss) to obtain greater understanding and (possibly) meanings of phenomenon and to address questions concerning the everyday lived experiences of parents of children with hearing loss. By collecting information about the shared experiences of this subset of the population, the researcher developed a composite description of the essence of experiencing parents’ perceptions of facilitative factors and obstacles to their involvement in the special education process (Moustakas, 1994). Through listening to their stories, the researcher sought to discover the answers to research questions while establishing a greater understanding of lived experience from the participants’ perspective.

Qualitative research analyzes and interprets data to create a narrative of the results that paints a vivid picture of the research findings. By conducting this research within a designated subset of the population of parents of children with disabilities, the researcher obtained program-specific data regarding practices described as facilitative or impediments to family engagement in the special education process (OSEP, 2011, p.107). For this study, parents of children who are deaf or hearing impaired and served by a regional service agency program were examined. Such data is not typically available because Pennsylvania’s School Performance Plans (SSP’s) are developed by each individual school district, while this regional service agency encompasses thirteen distinctive districts. Therefore, aggregate data of this nature had not been previously collected. Most significantly, the intent of this study was to give voice to the parents of children who are deaf or hearing impaired by eliciting their thoughts on facilitative practices and obstacles to their engagement in their child’s hearing support program. The ultimate goal was to enhance support to families on the journey of parenting a child with a disability, improving service through identifying practices to foster or avoid within the service delivery model.

Research Process

As the director of the program being studied, the researcher was keenly aware of the critical importance of transparency in data collection and the interview process. The Executive Director provided written endorsement of the plan to conduct this study. Furthermore, the premise and procedures to be utilized in the study were provided to program staff. This was done to provide assurance to teachers and other staff members who were likely to have concerns about survey outcomes. The capacity to leverage the knowledge acquired through this study as a change agent to enhance organizational practices served as a beacon throughout the research process. Professionals on the hearing support team were invited to view survey questions prior to study commencement, enlisted to support dissemination of the survey, and were kept abreast of the outcomes as the study progressed. Transparency throughout the study process was intended to facilitate buy-in, because study results were intended to be utilized as a springboard for ongoing staff reflection and growth. Through exploration of the phenomenon of family engagement in the special education process, challenges to effective engagement were illustrated, thus spearheading efforts to mitigate those impediments. Most notably, a celebration of the practices that are cited as effective have provided the groundwork for multiplying their impact. With a focus on those practices that support family engagement, efforts to expand those practices have intensified, ultimately enhancing programming for the students in this program and, potentially, for other practitioners similarly situated.

As the individual interviews progressed, the study participants appeared willing to share their intimate feelings about parenting a child with hearing loss. They shared the raw, emotional recognition of loss of the children they expected, and the celebrations of their children’s growth and achievements. Their statements provided meaningful insight to the experiences of parenting a child with a hearing loss, and have implications for those who serve all children with special needs. In listening to the parent’s narratives, we can all learn.

Participant interviews revealed the following facilitative practices which were described as supporting engagement in the special education process:

• Parents acknowledged the value they place on strong and consistent communication with the teacher of the deaf child as well as with the General Education team. They appreciate the ability to utilize multiple modalities to keep in touch, including email, voicemail, texts, and face to face conversations. Regardless of the methodology determined, accessibility to professionals is key.
• From the moment of diagnosis, parents crave information about hearing loss and its implications. They want “just in time” information that supports decision-making, understanding communication options, IDEA procedures, and their child’s rights relative to special education. Support in acquiring this information facilitates parents’ ability to effectively engage in the special education process. 
• Participants realized the generative value of making connections. As previously noted, more than 95 percent of parents of children who are deaf or hearing impaired have typical hearing themselves, and therefore have little or no experience with the challenges inherent with an impaired auditory system. Understanding is facilitated when families are able to effectively forge networks of support with professionals, other parents, and organizations that afford the benefits of experience with hearing loss.
• Participants in this study were emphatic in their discussions of amplification and the value that technology beings to their children’s lives. The participants spoke highly of the intensive support received from the teachers of the deaf and educational audiologists of the regional service agency from the time of diagnosis and initial access to hearing aids or cochlear implants through to selection of high-tech assistive devices. In addition, they acknowledge the value of our agency’s proximity and collaboration with a local children’s hospital. Of particular note was discussion of the willingness of the regional service agency to support ongoing understanding of technology advances through ongoing professional development.

The advocacy afforded to their children, as well as training to develop their child’s self-efficacious behaviors, is cited as facilitative by the parents in this study. In particular, parents are appreciative of the early connections that are prompted by professionals from this regional service agency. 

In addition, the data points to several obstacles to engagement that were noted by the participants. Subjects of the study related several situations or issues that proved to be impediments or obstacles to engagement. 

Parents stated that weak, non-productive partnerships with general or special education staff members were definite barriers to a sense of engagement. Feeling that their opinions, concerns, or ideas were insignificant or dismissed served to weaken or damage the relationships that are crucial to effective partnerships. While comments of this nature came from a minority of those interviewed, the deleterious impact on parents who felt disenfranchised lasted many years after the actual event. 

• Participants cited a lack of knowledge as an obstacle to engaging on their child’s behalf. This knowledge may encompass information on hearing loss, on communication modalities, or on the IEP process. When information was readily available, parents cited this as facilitative. Conversely, parents who felt that such information was not provided by their child’s teacher of the deaf, or that it was offered inconsistently, or at inappropriate moments in time, felt unprepared to effectively engage as an advocate on their child’s behalf. Parents who did not participate in early intervention, whether due to late identification or physical absence from the service, felt less competent in understanding their child’s hearing loss. Moreover, all families noted that directed activities and information on the needs of older students occurred less frequently although these were desired. Additionally, parents sought a forum to convene and opportunities for their children to know and engage with other children with hearing impairments.
• Confidence and competence relative to amplification technology was defined as an obstacle by some participants, despite overall positive feelings about the value of technology. Parents shared concern about keeping up with the intense speed at which amplification technologies evolve. They worried about inconsistent use of technology at school by teachers who do not recognize or understand the value of the devices. General education teachers were most often sighted as lacking in competence or desire to deploy technology, but one parent indicated that her child’s teacher of the deaf did not exude adequate confidence in the ability to set up, utilize, and educate others about her son’s frequency modulation (FM) amplification equipment. Teachers who failed to sustain the necessary professional development to stay abreast of technology changes were considered an obstacle to effective engagement by parents in this study.

In Beyond the Bake Sale: The Essential Guide to Family-School Partnerships, Mapp, et al (2007) defined possibilities for family connections along a continuum that begins with involvement and peaks with empowerment. They define family involvement as participation in school-sponsored activities, such as back to school nights and sporting events. Engagement involves participation in committee work or surveys, and opportunities for shared decision-making. Empowerment, the pinnacle of family connectedness, involves organizing or advocacy at school and community levels. Educational leaders are responsible for recognizing the need, and then to cultivate empowerment of families in their charge. An examination of social and cultural capital as facilitators to engaging families in the education process will support those efforts. 

Parent engagement is a multiplier for student success, the power of which cannot, and should not, ever be underestimated. Investment in supporting engagement is worth the commitment of time and energy because engaged parents serve as connectors (Dow, 2010). In the proverbial village, the importance of effective engagement is evident. As parents expand their personal capacity, they expand their potential impact for their own children, as well as other children whom they encounter in neighborhoods, on the soccer fields, and throughout the broader community. 

The Individuals with Disabilities Education Act is the key piece of legislation for students with differing abilities (IDEA, 2004), IDEA amplifies the effectiveness and potency of educational legislation and defines the need for parents to be involved in the Individual Educational Program (IEP) process relative to evaluation, development, and implementation, as well as placement decisions. Moreover, IDEA requires that parents must be equal partners, not only on the IEP team, but also with representation in matters relative to district, state, and federal policymaking. To do so, parents must be informed and engaged partners in their child’s education.

Parent engagement is not only a legal requirement of IDEA (IDEA, 2004, PL 408-446), it is also an evidence-based best practice. Family engagement efforts have taken a larger share of the spotlight with each iteration of educational legislation, including the No Child Left Behind Act (NCLB, 2001) and the most recent update of the Elementary and Secondary Education Act, Every Student Succeeds Act (ESSA, 2015). This legislative update recognizes that children live in the context of families and that strong family engagement is central (rather than supplemental) to promoting student success. The realization that professionals will come and go in a child’s life, but that the family remains a constant, serves to inform the notion of empowering the family (Robbins & Caraway, 2010).

Effective partnerships between families and schools are enhanced by reciprocity and trust, and ultimately, both parties benefit from the enhanced relationship. Of course, the most significant beneficiary of enhanced school-home and community relationships is the student. With intentional, ongoing emphasis on fostering partnerships, trust must never be taken for granted. Family engagement is enhanced through the development of social and cultural capital.

To begin, when one’s child is diagnosed with a hearing loss, parents must act swiftly to first acquire and then actualize the cultural and social capital necessary to procure outcomes or influence on behalf of their children. Cultural capital, first conceptualized by sociologist Pierre Bourdieu (1986), includes those non-economic resources that enable social mobility. Examples of cultural capital include knowledge, skills, and education. Bourdieu also states that social capital includes resources that an individual obtains by being part of a network of social connections. Both concepts hold that social networks and culture have value. Audrey Trainor (2010a) has noted the critical importance of all forms of capital regarding home-school interactions, but cites challenges in establishing this capital, stating that meaningful participation in the special education process necessitates a balance of power and status between home and school. This balance can be achieved through parental acquisition of social and cultural capital, which offers them entre to the field. Each of the parents interviewed alluded to the need for knowledge and information when discussing their child’s diagnosis with hearing loss. This quest for understanding is urgent and real as it forms the foundation for the acquisition of cultural and social capital. 

Social capital is an attribute of organizations that focus on norms and trust. Trainor (2008) notes that social capital plays a significant role in the lives of individuals who are at risk of being marginalized, emphasizing the importance of formal and informal support networks. Study participants echoed this importance. This capital is considered to have trading value that can be exchanged for intellectual and economic growth, which can lead to enhanced emotional satisfaction and autonomy in decision-making. In connecting with others with established social capital, families who join local clubs, advisory groups, and national organizations amass not only individual social capital, but simultaneously accrue benefits from the greater pool of capital possessed by the larger group. Social capital, like other forms of capital, is readily transmitted from parent to child (Bourdieu 1986). Consideration of the concept of cultural and social capital provides a structure for the examination of study results. 

In their responses to interview questions, participants shared experiences and anecdotes that were analyzed to derive recurring topics and themes. These themes include practices that are perceived to facilitate engagement, such as communication, acquisition of knowledge, partnership, technology supports, and advocacy. Obstacles to engagement include weak or non-existent partnerships, a lack of information, and varying issues surrounding technology. As parents acquire cultural capital in the form of knowledge and skills, one can assume that that this knowledge can be activated to cultivate social capital to further support their engagement. Under this assumption, the themes that emerged through the interview process relative to facilitative practices and obstacles to engagement are depicted below through the lens of cultural and social capital. Parents, 95 percent of whom are initially unprepared for dealing with their child’s hearing loss, seek equilibrium as their journey commences. This equilibrium is attained as they acquire the knowledge and skills essential to propel them toward effective engagement. Once established, this equilibrium can be disrupted during periods of transition, and so the delicate balance must be attended to. Parental self-efficacy supports the empowerment required to seek what one needs (DesJardin, 2007). Nevertheless, educators must remain vigilant in their support of families through the lifespan.

Figure 1: Figure & Social Capital

The discussion of cultural capital as applied to parents of children who are deaf or hearing impaired brings focus to the critical importance of parent’s knowledge of, and disposition towards, special education law and procedure, understanding of technology, and about resources to support them on their journeys. Findings support the establishment of a family engagement policy for the regional service agency in the study, as well as for local school districts and other organizations that are charged with supporting families of children with all disabilities. Development of a detailed family engagement policy is highly recommended. It is suggested that data derived from this study can inform the process of assessing school-facilitated family engagement by expanding the process of asking questions. Families involved in this study were delighted to participate, and all noted that they appreciated the opportunity to share their opinions and stories about the engagement process. The mere process of asking for feedback can be considered facilitative, as it drew parents into the conversation and fostered partnership with the interviewer. Regular opportunities to discuss their perspectives are recommended as a practice to bolster family engagement.

Facilitative practices were frequently mentioned by the participants from families with children whose hearing impairment was identified through newborn screening and were served by early intervention services until entering school-aged programs. In contrast, for three of the eight families whose children’s hearing impairment were identified later than three years of age, the themes of need for knowledge, resources, and advocacy were referenced as obstacles. These important practices were impeded because school-based services were not necessarily family-focused when compared to the family-centered, home-based programming mandated for early intervention. Just as their children do, parents benefit from early identification and family-centered supports. It is recommended that program planning support family needs across the lifespan. Customized programs and additional focus on families whose children are identified later in life could be ensured by meeting families at their respective points of entry to the service delivery system.

Parents in this study were generally satisfied with communication from their teacher of the deaf, but at least one parent suggested that they would appreciate more informal correspondence to share good news, citing that most correspondence centered on dealing with problems or issues. Regular, meaningful, two-way communication is an essential component of family engagement. Parents must feel that their input is important, and that it has value in the development and implementation of their child’s Individual Education Plan. These findings, therefore, serve to inform future program development.

Obstacle to Opportunities

The findings of this study provide insights to the experience of parenting a child who is deaf or hearing impaired. Information from this study affords an understanding of parental perceptions of facilitative practices and obstacles to family engagement in the special education process.

Participants noted that consistent, proactive, two-way communication was an essential component of effective engagement. Multiple means of communication were noted as effective, including phone calls, text messages, and emails. Of particular note, was that participants expressed a desire to receive information not only when there were problems or negative issues that needed to be addressed, but also when good things were happening as well.

Similarly, participants indicated that evolving, timely, and ongoing acquisition of knowledge was crucial to engagement in their child’s program. Understanding of the IEP process, implications of the hearing impairment, and expectations for programming were among the needs cited as facilitators. Participants were resoundingly clear in their assertions that the need for knowledge is constant, that it evolves across their child’s lifetime, and that supports provided to expand that knowledge base are highly valued. 

Additionally, participants stated that they valued the connections that they forged along the journey of parenting a child with hearing impairment. Parents considered these connections, with professionals as well as with other parents of children with hearing loss, to be strong contributors to their ability to develop self-efficacy relative to their parenting roles. These connections were noted to be equally important for their children. School-facilitated opportunities to make these connections were explicitly requested by the participants on their children’s behalf. Networking allows for the simultaneous acquisition of cultural and social capital, and cannot be underestimated as a facilitator of engagement. 

Furthermore, participants lauded the value of amplification and assistive technology, including hearing aids, cochlear implants, and FM systems; yet the parents noted the particular challenges of keeping up with the rapid, constant advancements in the field. Feeling less than fully competent with technology was a source of frustration and anxiety. Parents seek sustained support to stay abreast of changes in hearing technologies in order to assure optimal auditory brain access for their children.

Participants also contended that developing the ability to advocate was a necessary precursor to engagement. Advocacy skills were acquired as a function of confidence and competence regarding their understanding of their child’s hearing loss. 

Cultural capital takes the form of:

• Understanding implications of their child’s loss;
• Understanding auditory brain access;
• Technology in the form of hearing aids, cochlear implants and FM systems;
• IDEA regulations;
• Safety; and 
• Social implications of hearing impairment.

As this capital was acquired, participants became empowered to assume their roles as advocates for their child. When leveraged, this empowerment has propelled participants to expand their advocacy to state and national levels

Family engagement when children are deaf or hearing impaired must be viewed in the context of a changing landscape. Static processes for delivering support of family engagement must be replaced by dynamic, collaborative partnerships that successfully leverage and harness the impact of empowered parents. From this research, it can be surmised that the obstacles cited can be viewed as opportunities for growth and improvement that will enhance outcomes for all children. The findings of this study are a call to action to promote transformational leadership by eliciting the investment of time, resources, and energy that focus on family engagement as the foundational component of all educational endeavors. The study’s participants had self-identified as effectively engaged in the special education process, and so their responses provide validity for that subset of the population. The goal of this study was to explore the lived experiences of parents of children with hearing loss by listening carefully and hearing their voices in order to inform continuous program improvement. Results are being used to guide emerging practices, to strengthen those that need attention, and to inform local, state, and national policies. 

Families arrive at the special education doorstep with empty backpacks, unaware of what they need and uncertain about how to acquire what they need. They fear for their child’s safety in light of the implications of their hearing loss. Families crave connections with knowledgeable professionals and others who recognize their needs and can support them in building capacity to support their children. Social and cultural capital are amassed through these connections, and it is this capital that facilitates self-efficacy to become empowered advocates on behalf of their children.

Transitions through the life cycle, whether from preschool to kindergarten or from college to career, are periods when the intensity of need resurges. Educational providers are reminded that family needs are strongly influenced by the family’s current place in their journey, and that supports must be customized to the timing of those needs in order to ensure their effectiveness. Professionals are further reminded to tailor the levels of support and encouragement that they afford during times of educational transition, as a family’s needs and challenges resurge. 

Innovative models that place educators in partnership with parent and community organizations, as well as businesses and foundations, must be established to develop synergistic, sustainable collaborations that strengthen educational outcomes for children. In the regional service agency where this study occurred, the following actions have been deployed:

• Consideration of parents’ thirst for understanding in the early stages of partnership, and that their needs will constantly evolve. As adult learners, parents’ learning styles must be acknowledged and honored in order for interventions to be effective.
• Focus on the importance of cultural competence by embracing all types of parenting, including grandparents, who are at times in a triad relationship with their own child as well as the child with hearing impairment. Educators who have knowledge, skillsets, and attitudes that embrace the diversity of students and their families are better poised to cultivate their strengths.
• Recognition that (when present) both parents in a couple need to experience customized opportunities to learn and that this points to the need for flexible scheduling and delivery of services.
• Consideration to reframing teacher workdays, allowing for flexible schedules that enable teachers to meet parents where their needs are. Recognition that the teacher workday need not be locked, but rather should allow for accommodating opportunities to connect with families at varied times of the day, whether in person or via telepractice (Houston, 2014).
• Activation of the concept of a growth mindset in reviewing the findings of this study in order to move the organization from good to great relative to family engagement.

Participants in this study shared their perceptions of practices that facilitate their ability to engage. In the context of interviews, they also cited factors that have impeded this engagement. The voices of parents in this study were unified in desiring consistent, two-way communication that is customized to their child, and matched to their personal needs on the parenting journey. Participants called for intensified efforts to address transitions across the educational lifespan, whether from early intervention to kindergarten, or from high school to college. They seek expertise in support of amplification equipment. They particularly cite reliance on their children’s teachers of the deaf to impart confidence and competence to them and their children, noting the rapid and continuous advancements in the field. Parents thrive on information, connections, and partnerships that develop self-efficacy in accruing the social and cultural capital that are the keystones of their children’s success.   

Figure 2: Contributors to Engagement

Engagement efforts must extend beyond random activities; rather, they must form the core of a clearly articulated structure of service that allows for synergistic growth and perpetual forward motion. Activities that are linked to learning, such as literacy nights or technology fairs, are most likely to produce effective outcomes. Opportunities to learn side-by-side with educators will promote competence, confidence, and self-efficacy for families. Events that involve follow up or are part of a series of events with deliberate plans to integrate active participation will also bolster sustainable growth.  

Articulation of vision, policy, and framework that nurtures parents will enhance their partnership with the school and the greater community, ensuring the well-being of not only their own children, but of all children that the parent encounters. Parent engagement is a multiplier for student success, the power of which cannot, and should not ever, be underestimated. Investment in supporting engagement is worth the commitment of time and energy because engaged parents serve as connectors (Dow, 2010). In the proverbial village, the importance of effective engagement is evident. As parents expand their personal capacity, they expand their potential impact for their own children, as well as other children whom they encounter in neighborhoods, on soccer fields, and throughout the broader community. 

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This article outlines the transformative power of having everyone at a school understand and endorse family engagement as a core strategy. The content is designed to motivate school and district leaders to consider implementing research-based family engagement practices that create inclusive and diversity-responsive relationships and collaborations within, among, and between families, teachers, school/district administrators, and other school personnel. This type of family engagement program builds effective communication bridges with families by cultivating their social and intellectual capital, thereby bringing family engagement to a higher level (Bolivar and Chrispeels). Through a well-designed family engagement program, schools ensure families gain access to, or develop, the human and cultural capital they need to fully participate in the school’s educational program with their children. Families learn of their role in reinforcing their children’s learning and of the importance of becoming partners in the schools’ reform efforts to ensure their academic success (Hong). 

Educational reform literature identifies six areas in which classrooms, schools, and districts need to change if all children are to be provided with optimal learning opportunities, especially children from diverse background families who are traditionally underserved and/or underperforming. Substantial progress has been made in understanding what is needed to develop and sustain quality in five of the core reform elements, the exception is the Family, School, and Community partnership. While family involvement activities have been required in federally-funded and most state-funded educational programs since the 1960's, it is still the least understood or implemented of the key elements of educational reform (Ramirez; Domina; Wilder).

Research on building relationships with families shows that the relationships nurtured and developed with the families in the school community are of the utmost significance (Ferguson). Fostering these relationships for our communities of color; however, means honoring what they bring to school. Schools need to see diverse families as having value -- not as deficits (Olivos, Jimenez-Castellanos and Ochoa). They are a resource for other families as well as to the school. Yosso (2005) speaks to the kinds of “cultural capital” families possess and refers to it as “community cultural wealth.” Community cultural wealth includes: aspirational -- parents have aspirations for their children that helps them succeed; linguistic -- their language is rich in cultural heritage and is a connection to their families; social -- they belong to networks in their communities; navigational -- they have learned to get their needs met even though they don’t speak the language or know of the customs in their new country; and resistant -- they have a can-do attitude against all odds.

The goal for engaging families so they learn about schools and become equal partners is to develop their ability and power to accomplish results for themselves, their children, and potentially the entire school. The key is to change perceptions held by those who have traditionally held the power to either strengthen or limit engagement (Noguera; Jassis and Ordonez-Jassis; Goodall and Montgomery). There are important distinctions in the way families become partners in the school. When we engage families, we think of them as potential leaders who are integral to identifying a vision and goals for all children (Ferlazzo). Once engaged, these leaders encourage other families to contribute their own vision to the big picture, and they help perform the tasks needed to reach the established goals. Ferlazzo describes the differences between “involvement” and “engagement” of families in schools and points out that schools need to be aware of the differences and the potential outcomes of these two approaches for family engagement programs. Strong family, school, and community engagement programs reach out to families and engage them in true partnerships and challenge them to learn and apply the necessary supports for their children’s learning at home or school. Ramirez (2014) describes this as a process that gives families a sense of self (I can make a difference); a sense of place (I, too, belong at the school); a sense of purpose (I know the key role I have in the education of my children); a sense of direction (I know what I must do to ensure the academic success of my children) and a sense of possibilities (my children can be successful and go to college). It is this shared responsibility, integrated, sustained, and family strengthening approach that truly engages parents and fosters the relationships between schools and the home.   

Inclusive and Partnership-Oriented Family Engagement Programs   

In 2013 the U.S. Department of Education (USDE) released the Dual Capacity-Building Framework for Family-School Partnerships to guide schools in implementing effective family engagement programs. One of the premises of this framework addresses the importance of, “initiatives that take on a partnership orientation in which student achievement and school improvement are seen as a shared responsibility; relationships of trust and respect are established between home and school; and families and school staff see each other as equal partners -- creating the conditions for family engagement to flourish” (Mapp and Kuttner). 

Advancing the essential opportunity and process conditions necessary to fully engage families, as outlined in the framework, makes it critical for schools to develop strategies that encourage and support a sense of community and a sense of belonging amongst the families in the school community. This speaks to the value of building a sense of “familia” -- an attitude about connection, commitment, respect, love, and purpose (Vargas; Jeynes). This approach stresses the use of culturally responsive, co-powering strategies (Vargas, Transformative Knowledge) that welcome families, especially, those who bring diverse backgrounds, languages, and are traditionally marginalized and underserved in our schools. When every family can form partnerships with the school and take on leadership roles, it has been our experience, and research on family engagement overwhelming confirms, schools transition into being better schools and show gains in student achievement (Henderson, Mapp and Johnson). The entire school community is enriched by integrating every family’s potential contributions to the school.  

The supportive social relations formed while families of the same school work together provide a variety of protective functions for families who encounter many challenges. This is especially true for immigrant families who lack the support extended families offer (Valdez). Having strong family, school, and community partnerships provides emotional support, tangible assistance, and information about schooling to families, who do not know how to be engaged and what this looks like for their own realities. In addition, the connections families make with teachers, counselors, coaches, and other supportive adults at the school are important in the academic and social adaptation of students, especially English Learners, students from economically disadvantaged backgrounds, and students with special needs.

After reviewing the literature and researching family engagement practices in schools what we find is that only using one strategy, e.g., having family education sessions, does not lead to the kind of engagement that generates stronger academic achievement for every student at the school. An overall finding and conclusion points to the value of having a multi-pronged approach that not only engages families, but the entire school community where relationship-building and leadership development are the key critical elements. The following are essential components for an effective family engagement program in schools. 

• Offering families an opportunity to not only get information about school activities and events, but developing their cultural/intellectual skills; increasing their knowledge about schooling and what their children are learning; and learning effective communication and advocacy skills as a foundation for becoming partners with the school -- developing social capital (Bolivar and Chrispeels). 
• Building a critical mass of family leaders at the school with the knowledge and skills to engage and share their learning with other parents. Families not only learn how they can increase their children’s learning and become partners at the school, but they also participate in school leadership committees and school planning teams. They become the family ambassadors at the school reaching out to other families and engaging them in sessions that increase their knowledge and presents an opportunity for them to be engaged at the school. They become the go-to group of parents that volunteer and are available to work on meaningful projects for the school, and at the same time they encourage other families to get engaged.
• Providing professional development not only for family members, but for school leaders and other staff members on to how to work effectively and respectfully with families. Many school personnel do not have a background in family engagement or culturally responsive strategies that welcome and honor families because their teacher/administrator education program did not include this topic in their preparation (Mapp and Kuttner).
• Establishing an annual school family action plan with established goals and school activities for family engagement that are learning-outcome driven, collaborative, integrated, and focused on student achievement. This plan ensures activities supporting the instructional program take place, and are planned in coordination, with families and based on their needs.
• Ensuring the program is sustainable, systemic, and integrated into the school community. When families are integrated into the program and planning activities, this happens more readily. Monitoring and evaluating the program, with feedback from families, ensures further engagement of families who are involved in planning alongside the principal and teachers.

A Unifying Model for Family Engagement -- Family, School and Community Engagement Leadership Development (FSCELD)

The USDE Dual Capacity-Building Framework addresses the concept of opportunity conditions where participants (families and school personnel) come away from the learning with a desire to apply what they learn. Schools, who value what families bring to the educational setting, recognize the importance of creating opportunity conditions for everyone by having goals that build and enhance the capacity of staff and families in the 4 C areas supporting student achievement and school improvement (Mapp and Kuttner). The “4 C” areas are: a) Capability: human capital, skills, and knowledge; b) Connections: important relationships and networks -- social capital; c) Confidence: individual level of self-efficacy; and d) Cognition: a person’s assumptions, beliefs, and worldview.

The FSCELD Program¹, a research-based program that is collaborative by design, has the essential key components for effective practice listed above. Unlike other family engagement programs, it deliberately fosters family engagement in the school’s context, where families have an opportunity to make a difference for the entire school community. The program features a school-based, systemic approach which engages schools and districts in building their capacity for establishing effective, meaningful, and relevant family engagement practices and strategies. 

A strong feature of the program is leadership development and providing families, teachers, community liaisons, and principals the tools they need to work together as partners to improve schools and support the education of students. A five-year research study² documented the implementation of the family engagement program. It also documented how family members, who participated in the program, increased their ability to participate in, and create a community of, support (increased social capital) from which they and other families could draw over time at each of the schools. In addition, higher levels of student academic achievement are linked to sustained family engagement in advocacy, decision-making, and oversight roles, as well as in the primary role of home teacher (Wilder; Hess). A carefully planned program, with the key features implemented, fosters the families’ ability to become integral partners in the school -- their voices, viewpoints, and experiences (increased human capital) enriches the school program and adds to the educational achievement of students.     

The USDE Framework components were integrated into the design of the FSCELD program. The implementation of the program was carefully monitored using a matrix, which listed the critical components and acceptable variations of the program (Hall). As each school has their own realities, and the program is naturally different at other school sites, listing “acceptable variations” assisted the schools in seeing if their implementation of the program followed the model or had areas needing additional support and/or possible changes. The purpose of using the matrix, at least yearly, was to ensure everyone at the school had conceptual clarity about what the program looked like in practice.³ Furthermore, since planning family engagement activities is vital to an effective program, a guide and an annual plan template was developed for the schools to use. This template integrated school goals in the 4 C areas to assist the schools in maintaining the focus on the goals for the program and the process components, e.g., linked to learning, collaborative, integrated, etc. This feature ensured: 1) planned activities led to increased student achievement; and 2) there was buy-in and knowledge of activities from all stakeholders. 

Documenting Success -- Building Relationships and Cadres of Parent Leaders for Our Schools

One of the major outcomes of the FSCELD program is the continued engagement of family leaders, who work with school leaders and other school personnel, to maintain and sustain the family engagement program at the school over time. The results of the program indicate that once family members develop their skills as school leaders they take on decision-making roles and work alongside the principal to engage future parents at the school. They also continue to build their own leadership capacity, as well as that of other family members at the school. Their participation has brought a rich new asset to the school. The leaders know their school and the needs of other families and they work together to meet those needs. An example is when one family had an autistic child and the parent felt it was important that other families have information on autism. The leaders worked with the principal and they planned an “Autism Day.” Information was disseminated and guest speakers provided other information on this important topic.

Two previous USDE grants from the Office of Innovation and Improvement funded the Parent Information Resource Center (2003 to 2011) that laid the foundation for securing the i3 research grant and in the development of an Awareness (18 hours), Mastery (36 hours), Expert (48 hours), and an Advanced Leadership Development (16 hours) curriculum and program design using a trainer-of-trainers model. Each of the family leadership development modules considers adult learning theory (Speck) and speaks to the essential elements of offering professional development to adults who bring their lived experiences to the learning task. Transfer of learning for adults is not automatic and must be facilitated. Coaching and other kinds of follow-up support are needed to help adult learners transfer learning into daily practice so that it is sustained. The program adhered to the following elements of adult learning theory:

• Adults will commit to learning when the goals and objectives are considered realistic and important to them. Application in the 'real world' is important and relevant to the adult learner's personal and parental needs. The “real world” in our work with parents is the improvement of academic achievement of their children, as well as developing a high level of parent satisfaction with the quality of content and usefulness of our services. Our task was to connect the dots between the knowledge of the content of our Mastery and Expert levels and the improvement of the student’s learning and the parent’s own sense of developing leadership.
• Adults want to be the origin of their own learning and will resist learning activities they believe are an attack on their competence. Thus, parent professional development needs to give participants some control over the what, who, how, why, when, and where of their learning. In terms of being the origin of their own learning, our “conocimiento” process addresses this point by situating the parent’s learning within and based on their lived experience thus underscoring their competence. We unearth the ways in which they have acquired skills and knowledge from their own lives and prompting them to formulate questions.
• Adult learners need to see that the parent professional development learning and their day-to-day activities are related and relevant. In the FSCELD program, the action plan and journal reflections are critical aspects of incorporating learning into the daily activities of parents at home, school, and community. How we follow-up with helping parents to incorporate and reflect is a key step for our participants.
• Adult learners need direct, concrete experiences in which they apply the learning in real life. Our modules give parents the opportunity to implement their action plans and get feedback from their cohort members.  
• Adult learning has ego involved. Family professional development must be structured to provide support from peers and to reduce the fear of judgment during learning. Our culturally responsive approach and framework creates the opportunity for trust building and risk taking in a safe and supportive environment.
• Adults need to receive feedback on how they are doing and the results of their efforts. Opportunities for feedback is built into the activities allowing the family member to practice the learning and receive structured, helpful feedback. 
• Adults need to participate in small-group activities during the learning to move them beyond understanding to application, analysis, synthesis, and evaluation. Small-group activities provide an opportunity to share, reflect, and generalize their learning experiences. Our module structure has taken this small group need into account. 
• Adult learners come to learning with a wide range of previous experiences, knowledge, self-direction, interests, and competencies. This diversity must be accommodated in planning the family professional development. To accommodate the diversity of the families and support their individual learning and at the same time promote group unity and action, the use of metaphors and sharing of experiences allows them to create an inclusive environment -- building that sense of community. 

The advanced leadership sessions of the program facilitated the continued development of parent leaders at the school and district level. These school leaders are graduates of the Mastery and Expert Levels. It was noted that while they successfully completed the trainer of trainer program there was still additional skills needing attention. To meet this gap, staff developed the Advanced Leadership sessions with topics that include: 1) Building relationships with diverse background groups through effective communication strategies; 2) Using new technology tools for presentations, meetings, and for research; 3)  Learning about school policies and regulations, as well as understanding roles and responsibilities of school/district leaders; 4)  Developing agendas, minutes, and facilitating meetings; 5) Understanding the role of advocacy and leadership roles/responsibilities of leaders; and 6) Understanding the planning process for engagement activities and the role of parents as part of the team. 

Documenting the outcomes for the research study meant that we had to have an array of measures to view what was happening at the schools. An annual parent engagement survey was given to all families at the school, as well as principal, vice-principal, teachers, and other staff. Interviews and focus groups were conducted with the principal and parent leaders to get their feedback and discuss what outcomes they experienced because of the program. In addition, at each meeting (biannual) held with the principals and district representatives, there was an opportunity for using reflection questions about what was taking place at their school to get feedback about the implementation of the program. The annual survey responses (290) for the principals, teachers, and other staff for the 2016-2017 school year, the last year of the research project, showed the following:

• From a total of 245 teacher responses, 87 percent reported that the parents at their school who are “actively engaged” have a positive impact on student learning; and 82 percent reported that these same parents have a positive impact on school improvement. 
• On the annual survey on family engagement, administrators at six of the 10 schools reported an increase in relationships with parents during the last school year and three schools reported that their relationships had increased the year prior and stayed the same this year.
• 47 percent of teachers and support staff indicated their relationships with parents increased, while an additional 31 percent indicated that those relationships had increased last year and stayed the same this year. 

A majority of all respondents agreed that the following statements were “a great deal like” or “a lot like” their school,

• Family programs and activities focus on student achievement so families understand what their children are learning. (Teachers 82 percent, Staff 96 percent, and Principals 100 percent)
• Families and staff have opportunities to learn together how to collaborate to improve student achievement. (Teachers 58 percent, Staff 72 percent, and Principals 90 percent)
• Teachers and families have frequent opportunities to get to know each other at school via meetings, breakfasts, home visits, and/or class observations. (Teachers 63 percent, Staff 75 percent, and Principals 90 percent)

As a result of the project, 64 percent (157) of the teachers’ stated, “I now have a greater understanding of the importance of engaging families in our school.” Teachers, at least two per project year from each school, attended a workshop on culturally responsive practices so there were at least 80 teachers who attended the sessions offered each fall. These sessions also included other office or support staff members. The aim of these sessions was to discuss and reflect on issues that impacted school climate.

Data on the FSCELD program indicates that progress in meeting target achievement objectives for students at the 10 schools was made. The goal regarding student achievement stated -- “proficiency levels in language arts and mathematics for 3^rd, 4^th, and 5^th grade will increase annually by four percentage points in at least six of 10 schools, as measured by spring 2015 (baseline), spring 2016, and spring 2017 state assessment data.” The following describes progress for Year Five:

Progress was also evident on the California English Language Development Test (CELDT) -- “The percentage of grade 3, grade 4, and grade 5 English Learner students scoring at Early Advanced or above on CELDT will increase by four percentage points in at least six of 10 2INSPIRE schools, as measured by spring 2015 (baseline), spring 2016, and spring 2017 scores on the California English Language Development Test (CELDT).” The external evaluators summarized CELDT data by focusing on the cohort of students that started Grade 3 in 2014-15 and looking at their progress as they moved to Grade 4 and Grade 5. The number of students tested decreased each year -- most likely as a result of students being re-designated as fluent speakers (RFEP). Secondly, the data shows that each year the cohort showed an increase in the percentage of students scoring proficient and above on CELDT. Nine of the 10 Project 2INSPIRE schools showed a 20 to 40 percentage point increase from Grade 3 to Grade 5; and only one showed a decrease. 

Progress made by the schools on California's integrated accountability system, that meets both state and federal requirements, also indicated positive results. Change in the accountability system is the difference between performance from the most recent year of data and the prior year’s data. The five change levels are: Increased Significantly, Increased, Maintained, Declined, and Declined significantly. The performance levels (i.e., the cut scores for Status and Change) serve as the performance standards for the state indicators.  

In reviewing the progress made in engaging parents in the FSCELD Program this area also showed positive results.⁴ A longitudinal participant database that includes attendance and other participant information was developed by staff and evaluators to track levels of participation by participants and by site. By the end of the project, the program has: a) served 1,124 parents (unduplicated count); b) certified 652 parents at the Mastery Level; and c) certified 261 parents at the Expert Level. The results and analysis of the annual survey of families in the entire school will be completed for the evaluation report in August 2018.

One of the goals for participating families was to ensure the program quality and content met the expected outcomes for the program. Since the final report in this area is not yet complete we can look to the results in 2016 to report on the feedback provided about the leadership program from parents attending the sessions. On weekly feedback surveys, collected at the end of each Mastery level session, we included items related specifically to the objectives and learning outcomes for each session. Collectively, 97 percent (n=123) of participants “strongly agreed” or “agreed” that they had learned the concepts presented, and 98 percent (n=120) “strongly agreed” or “agreed” they were confident in applying their newly learned knowledge or skill. The Expert level surveys collected at the end of each session indicate: 97 percent (n=65) of participants “strongly agreed,” or “agreed” that they learned how to share what they learned with other parents. On the end of training questionnaire for Expert Level P2I-PLD, participants were asked to rate their level of confidence with their ability to present what they have learned to other parents. Collectively, 98 percent (n=66) of participants are “moderately” to “highly” confident that they can plan and organize a presentation for parents and others and can present information about schools to other parents.

In looking at the school context, interviews of principals (Spring 2018), who participated in the five-year research study, report the following as outcomes of the program.

• Parents are more engaged in building their knowledge (intellectual capital) and are more knowledgeable of the educational program for their children and their role in that program.     
• Parents participate in meetings with the principal and are engaged in committees at the school (social capital).
• Parent are engaged in learning from and with teachers on how to reinforce what is taught to their children.
• Parents have an increased ability to be open to receive and to sharing their ideas.
• Principals have increased partnerships, better communication with parents and supportive relationships with parents.
• Parents have a greater willingness to assist/volunteer and are more involved in school activities and events.
• Parents have taken on more leadership roles (committee chairs) at the school/district.

Focus groups conducted during Spring 2018 with 60 family leaders, who participated in the FSCELD program at the 10 school sites report their participation has helped them in the following ways:

• Greater confidence for approaching teachers to discuss their children’s progress and to get suggestions from them about how they can reinforce learning at home.
• Motivated them to pursue their education (many parents have gotten their GED and enrolled in community college as well as participated in “Plaza Comunitaria” a collaboration with the Mexican Consulate to finish their primary and secondary schooling and receive their diplomas from Mexico).
• Provided them with resources that inspired them to pursue their goals established in the program, as well as, enhanced the abilities they needed for themselves and their children.
• Facilitated their participation in the leadership committees, such as School Site Council, and being representatives of the school at district meetings.
• Learned about their rights as a parent, e.g. in special education meetings.
• They are more informed and can make informed decisions and seek additional support -- e.g., they know about and understand what classes their children need for college and the importance of high school grades.
• Have greater confidence in presenting to other parents; in asking questions; in getting their needs met because of the information they received.
• Have greater expertise and knowledge to share information with other parents, getting involved in school events, tutoring students.
• They can work with the principal and teachers on supporting the school when needed.

The FSCELD program, developed under the direction of the author, implemented with the assistance of a family engagement school-site coordinator, four family specialists, and two administrative assistants were funded by the USDE Office of Innovation and Improvement’s i3 Investing in Innovation Research Program (Development grant), 2013-2018. An adaptation of the program has also received funding from foundations in Northern and Southern California and is presently being implemented in more than 25 school districts in California through contracts with individual schools and/or districts. 

The family engagement program carried out in the contracts with schools use the Awareness, Mastery, Expert, and Advanced leadership curriculum. Schools seeking a contract are encouraged to include professional development for staff in family engagement practices, as well as the key planning components. The schools, however, select the services for their school sites. Even though some schools/districts do not fully implement the total FSCELD program, the results for the families, in all forms of the program, indicate parents’ sense of efficacy is enhanced as they learn both the content and to be facilitators for the program. The culturally responsive instructional approach that validates their lived experience and reinforces their strengths contributes to the success of the program. No matter which option is chosen by the schools, the schools report positive outcomes for the parents. Many of them, who participated and graduated from the program at various sites and school districts, are now participating and working as facilitators for the program at their schools or at the district level. They are sharing their knowledge and commitment to effective family engagement and making a difference not only at their schools but in many schools in California.

In speaking of the social impact this program has made we must speak of the differences we see in the families after their participation. Their sense of efficacy as parents, as role models for their children, and as active partners in the school has truly changed their lives and has had a powerful effect on their children (Jeynes). The principals and teachers, surveyed annually about family engagement practices at their school, and who participated in the research study, report that their schools have been transformed. Not only because the parents at their school know how to be -- but are -- engaged in the school. The perceptions of the parents, especially from diverse backgrounds and languages, held previously by the school staff have changed dramatically. This expected outcome fulfills the most important goal of the program. Perceptions about others interferes with and inhibits true partnerships and a willingness to work together. When respect and honor replace limiting perceptions of each other (Jeynes), real progress is made to address achievement gaps especially so evident in schools for diverse background students. It is the cumulative effect of purposeful, regular, and timely interactions between teachers and families that creates a “greater reservoir of trust and respect, increased social capital for children (and their families), and a school community more supportive of each child’s school success” (Redding, Langdon and Meyer).

Author bio

María S. Quezada, Ph.D. (2013-present) is the project director for the Investing in Innovation (i3) development grant funding research on parental engagement programs after retiring as the Chief Executive Officer for the California Association for Bilingual Education (CABE) (2000-2012) where she also served as the Director of the CA State Parent Information Resource Center (2003-2011). Previously, she was the Title VII Multifunctional Resource Center Director, and the Director for Professional Development at the Center for Language Minority Education and Research and an Associate Professor in Educational Administration at California State University, Long Beach. Dr. Quezada obtained her Doctor of Philosophy degree from the University of Southern California in 1992.  Her major field of study was in the area of Educational Policy, Planning, and Administration with a supplementary in Curriculum and Instruction, and an outside field in Linguistics. Dr. Quezada has provided leadership and received statewide recognition for her work in bilingual education: Bilingual Administrator of the Year (1988) for San Bernardino County; Orange County LULAC Outstanding Hispanic Educator of the Year (1991); President of CABE (1997-1999); she was recognized for her Leadership by the Los Angeles County Bilingual Directors Association in 2005; and the CABE Social Justice/Community Voice Award in 2017.  

Endnotes  

¹The California Association for Bilingual Education, a statewide non-profit, has partnered with school districts in California to implement “Project 2INSPIRE” as the family engagement program offered to districts is called. CABE’s FSCELD program outlined for this article is a targeted school-based reform approach that engages parents from diverse and low-income communities and includes constructing a systematic, learning outcome driven, strength-based collaboration with educators, parents and the wider school community. For more information on Project 2INSPIRE interested persons can contact the Director of Family Engagement, Maria Marquez-Villa at (626) 814-4441 extension 200.      

²The i3 research for the family engagement program was carried out at 10 elementary schools in three districts in Southern California. The i3 project’s research model of the program included all the key critical components for family engagement.  Two research studies of the FSCELD program were funded by the USDE Office of Innovation and Improvement.  One was through the Parent Information Resource Center program that included a quasi-experimental research study at 18 schools (2006-2011) in northern and southern CA and the most recent an i3 Investing in Innovation research study (2012-2018) at 10 schools in southern California.

³The research design for Project 2INSPIRE: Family, School and Community Engagement and Leadership Development Program consists of an interrupted time series design without a district-level comparison group.  The outcomes from this research study allowed us to look at changes within each of our participating schools (i.e., percent of 3rd graders testing proficient before the project started and before it reached capacity compared to percent of 3rd graders testing proficient beginning in spring 2016), but we were not able to make any comparisons between our 10 treatment schools as part of this study. The preliminary year five annual survey results are reported. The project staff and external evaluators are completing the final performance, evaluation and research reports scheduled for completion by September 2018.

⁴ In Year 5 significant changes involved principal changes in one school.  This school has had three principals during the five years of the project, another school had a principal change in year 4 and two districts had Superintendent changes.  Another issue staff worked through was recruitment of family members for the Leadership Development program.  In all three districts there were competing programs that impacted the recruitment efforts of project staff to enroll parents in the program.  In the end, however, the parents graduating from the FSCELD program became facilitators for the other programs at the school sites—this highlights the preparation they received in the leadership program that uses a trainer-of-trainers model.

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Parenthood is a challenging and rewarding experience. Becoming a parent of a child with special needs both enhances these experiences and presents unique circumstances. A common thread among parents is the desire to adequately provide for their children so they can achieve their maximum potential, possess self-esteem, and enjoy meaningful accomplishments throughout their lives. For parents of loved ones with special needs, obstacles to achieving such goals exist at both the family level and that of the greater community and within society. Acknowledging, understanding, and adequately preparing to manage these obstacles empowers parents as caregivers, while allowing the best chance possible for their loved ones to obtain and maintain the quality of life envisioned.

Family

At the family level, a primary consideration is often how to obtain and maintain quality of life for dependents with special needs once they become adults and, typically, live very long lives. What happens when parents are no longer able, or around, to supplement their children’s needs? The solution involves being proactive to create a comprehensive, modifiable plan with built-in options based on the goals envisioned by the parents and child, while simultaneously enlisting the guidance of professionals who are well skilled in working with the families of loved ones with special needs. Goals, and the financial protection of the entire family, should be considered including any siblings without special needs and the parents themselves. When the process is executed correctly, peace of mind, a sense of empowerment, and control, often result.

The essential elements of the plan involve coordinating strategies among four areas: 1) government benefits; 2) legal; 3) care management; and 4) financial, to maximize available resources, close any gaps in supports, and maintain continuity of care.

Government Benefits

It is important to maximize federal, state, and county assistance programs, while considering that government benefits only contribute to the basics of food, shelter, and clothing at or below poverty level. Medicaid is a federally run program that is administered by the states. Supplemental Security Income (SSI) is a federally funded program that pays recipients a set monthly amount. The maximum SSI benefit is the same in all states ($750/month as of 2018).¹ Both Medicaid and SSI are needs-based programs. This means that, to qualify, an individual must have very little income and assets in their name. For most states, this threshold is $2,000.

A significant feature of qualifying for SSI is that it automatically makes a recipient eligible, and in some states, qualified, for Medicaid. With the high-cost of healthcare, especially among those with special needs, it is important to leverage this benefit. Furthermore, receiving Medicaid is a criterion to qualify for Medicaid Waiver (Waiver) programs, which may be available after age 18. These programs help pay for healthcare services and therapies that, prior to 1991, were only available to people who were institutionalized (i.e., in a nursing facility or group home)². Waivers allow individuals with disabilities to receive needed supports at home or at the community level. However, wait lists for waivers can be three years or more, so it is important to determine eligibility and the urgency of need as soon as possible. This can be accomplished by working with a child’s case manager or supports coordinator, if assigned, and applying through the county assistance office.

Legal

Special needs planning is different from general estate planning from both a legal and financial perspective. A relevant estate planning tool that can indirectly provide assets to loved ones with special needs, while allowing the maintenance of government benefits, is a Special Needs Trust (SNT). Assets are provided indirectly by being managed through a chosen trustee or trustees. Distributions are made at the discretion of the trustee(s) for items not covered by government assistance. The SNT is generally created by parents or grandparents either during their lifetimes or at death, through their wills.

There are SNTs that can be prepared to fit various circumstances, and the common purpose is to supplement the many items not covered by government assistance programs. To ensure a proper SNT is created, it is essential to work with an attorney who is well versed in this area. Considerations include the source of the funds, whether from the individual with special needs themselves (First Party SNT) or anyone besides that individual (Third Party SNT); and when the SNT is to be funded, either while the parents are alive (Inter-vivos/Living SNT), or after they are gone (Testamentary SNT). Both living and testamentary SNTs can avail gifting by family or friends.

Pooled SNTs are a third choice, established and administered by nonprofit organizations. Joining a pooled trust can be useful for families of modest means since they do not have to pay to create an individual SNT, and/or for those who do not need a very large sum of money to be available to supplement the government benefits their child receives. Contributions of each member family are combined in a common fund, which minimizes administration and management costs. Separate accounts are created for each individual member.

Trustee selection is a crucial decision, and often one with which many families struggle with. To assuage any concerns about appropriate use and management of funds, co-trustees may be ideal. One or more family members or friends who know the dependent well may be good choices for determining discretionary use of distributions. A professional organization, such as a bank or trust company, may be elected for their technical, accounting, and legal expertise for trust management purposes.

Further considerations for parents are decisions regarding Guardianship versus Powers of Attorney (POA) once their child turns 18 years old and is legally considered an adult. The capacity of an individual to make independent decisions and understand potential consequences, even with the support of others, is the basis of the issue. The types of decisions include those relating to healthcare and general matters, including financial. Hence, there are both Medical and General POAs. A POA is a contract between, for example, an individual with special needs and an “agent” who can guide the decision-making process and have ultimate authority.

Guardianship practices vary by state and there is no federal guideline.^3,4 It is a legal proceeding in which a court ultimately rules on capacity and on the appointed Guardian, taking into consideration the wishes of the parents. Whereas POAs can be revoked should the individual have adequate capacity and make the decision to cancel the contract, Guardianship can be much more costly and difficult to terminate or to have an alternative Guardian appointed.

Care Management

Aside from family members, who know the needs, goals, and best interests of their loved one, it is practical to consider enlisting the assistance of a professional care management service. The mission of these organizations is to empower and support individuals with special needs by providing customized services that improve their ability to live fulfilling lives in the community. Most provide short term, intermittent, and life-long supports including: assistance in acquiring government benefits, appropriate housing and employment; improved medical and health management, social engagement; and educational pursuits.

Once a plan is created, both legal and less formal documents can be leveraged to communicate intentions to relevant family members and professionals. A Letter or Memorandum of Intent (LOI) is a non-legally binding document that can be created by parents, and modified over time, as appropriate, to capture relevant information about their child. This tool can be used as a guide for alternative caregivers for any given time, while outlining intentions for the future. The LOI provides instructions regarding the child’s health care, education, diet, employment, living arrangements, likes, dislikes, habits, strengths, weaknesses, and goals.

Financial

As primary caregivers, protecting the income earning capacity of the parents, their lifestyle, as well as their savings and retirement assets, is essential to the planning process. A proper plan can protect parental assets from being reduced or depleted, as financial demands can be immediate and overwhelming. This is worsened if one parent needs to leave the workforce to manage the needs of their child, if a caregiver is hired, or if one parent cannot face matters and leaves the family.

The quality of life of both the parents and their loved one are interdependent. This enhances the significance of having sufficient life, short- and long-term disability, as well as long term care insurance. Furthermore, raising a child with special needs often necessitates planning for a “three-person retirement,” in the case of two-parent households with one dependent. In other words, long term planning strategies are essential for the financial support of two generations. 

There are various methods of funding a SNT, the choices of which can have a dramatic impact on the resources ultimately available for your loved one. Considerations include the risk tolerance of the parents, interest rates, any early withdrawal penalties, and tax consequences. Therefore, just as it is crucial to work with a specialized legal representative, it is equally important to work with a financial agent who is well versed in special needs planning. 

Determining the amount of assets ultimately needed to fund a SNT can be estimated based on variables such as the diagnosis, prognosis, functional skill level, anticipated housing situation, earning potential, healthcare needs, and cost of other necessary supports throughout adulthood. A competent financial specialist can help in determining a targeted sum, and in reviewing beneficiary designations of accounts such as retirement plans and life insurance policies.

The age that a parent begins to elect Social Security benefits is a further consideration. The earlier Social Security begins for a parent, the greater the lifetime disability benefits are reduced for their child with special needs. This is because the benefit increases each year one waits to claim it up to age 70. A child can get social security benefits from a parent that retires, dies, or becomes disabled at any age, provided the child themselves is deemed disabled prior to age 22 and remains so.

Society

At the societal level, considerations include community integration via meaningful employment and appropriate housing options to facilitate maximum independence. There are ongoing efforts among academic, nonprofit, corporate, and parent-based organizations to create opportunities while providing incentives to employers and real estate investors. Individuals who have direct experience supporting the special needs community, and others who have either congenital or acquired disabilities themselves, are creating and leveraging technological innovations, including various apps, that can support independence and inclusion of those with special needs in the community.

Some apps are available, and others are in development to support real-time tracking, live connections, and communication among individuals, parents, caregivers, and employers. Many such apps can be customized to prompt individuals to complete tasks in the home or workplace, while notifying a caregiver or employer of the outcome. It is possible for dynamic changes and updates to be automatically captured in some instances without being pre-programmed. Such “machine learning” can facilitate real time care management, for example, based on needs as outlined in an Individualized Support Plan (ISP)⁵.

Author bio

Photo Credit: Marianne Walls Photography 

Lori M. Leathers, M.S.

As a Financial Agent and mother of a child with a cognitive disability, Lori helps parents navigate through the special needs planning process. This includes assisting them to secure the future they envision for themselves and all family members by ensuring financial, legal, and government benefit resources effectively combine to work to their advantage.

¹ Social Security Administration at www.ssa.gov for 2018.

² Nursing and Behavioral Health Services at www.nbhslic.com.

³ Check with state laws to ensure that Guardianship is applicable.

⁴ Annual Practices Update on Guardianship Laws and Practices at www.ncler.acl.gov.

⁵ Analytics Software and Solutions at www.sas.com.