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EARLY HEAD START SUPPORTS FAMILIES IN OBTAINING SERVICES FOR YOUNG CHILDREN WITH DISABILITIES
Shavaun M. Wall, Nancy E. Taylor, Harriet Liebow, Christine
A. Sabatino,
Michaela Z. Farber and Elizabeth M. Timberlake
The Catholic University of America
A central purpose of Early Head Start (EHS) is child development, which includes the development of children with disabilities and delays since at least 10 percent of the infants and toddlers served by EHS must have documented eligibility for early intervention services. It follows that programs must comply with two related EHS principles: (a) inclusion of young children with special needs in EHS programs and (b) collaboration with early intervention service providers and systems to ensure that children of EHS families obtain early intervention services when warranted and that families of children being served by early intervention are referred and enrolled in EHS services when they meet EHS eligibility criteria.
While worthy ideals, the principles of inclusion and collaboration may be difficult to implement (Corso, 2000; Summers et al., 2001). For example, research has suggested that, although young children from low-income families face a higher risk of delays and disabilities (Brooks-Gunn, Duncan & Maritato, 1997; Sherman, 1998), their families are less likely to obtain early intervention services than more affluent families (Spiker, 2001). This may be due to a variety of factors, including the complex stresses of meeting urgent basic needs, such as adequate housing, nutrition, and health care that pose barriers to acting on behalf of an individual child. Additionally, parents may have great difficulties negotiating unfamiliar and complicated service systems. EHS staff must address these underlying barriers, if they are to improve child outcomes by supporting low-income families to obtain the early intervention services that might prevent or mitigate the negative effects of delays or disabilities.
A team of researchers from the Catholic University of America (CUA), comprised of professionals in psychology, education, and social work, conducted two studies to: (a) determine whether EHS enhances the likelihood that low-income families will obtain early intervention services and (b) identify how EHS works with families toward that goal. The first study investigated whether EHS facilitates referral, identification, and access to early intervention services for infants and toddlers through case studies of 32 families living in an impoverished corridor of a generally affluent, densely and diversely populated Mid-Atlantic suburban area served by the United Cerebral Palsy Early Head Start Program. We conducted case studies of 19 EHS (intervention) and 13 comparison families with focus children suspected of needing early intervention services for developmental delays or disabilities (through PL 105-17, the Individuals with Disabilities Education Act Amendments of 1997, either Part C or Part B). We defined suspected need as a recommendation that a parent contact early intervention services from either medical or community providers (4 EHS families, 4 Comparison families), EHS staff (14 EHS, 0 Comparison), researchers (through notification of low Bayley scores; 1 EHS, 8 Comparison), or self-referral (0 EHS, 1 Comparison). We drew these 32 cases from the combined 149 EHS and comparison families; they represent all cases in which there was suspected need by the time the focus child was 3 years old. (The sole exception is one family whom we could not reach for interviews.) The ethnic/racial profile of the 19 EHS families includes eight that were Hispanic immigrant, five African American, and six Caucasian families. Among the 13 Comparison families were four Hispanic immigrant families, one other immigrant, six African American, one Caucasian, and one Hispanic American.
Our case studies integrated in-depth interviews of mothers and staff with reviews of program and research records from the national EHS evaluation and CUA’s local research. The first four authors conducted the record reviews and all interviews, except when parents spoke only Spanish fluently. A bilingual social worker conducted these six interviews accompanied by a researcher. We interviewed EHS staff (home visitors and case managers) prior to parent interviews to learn about their work with these families in general and with the child with suspected special needs in particular.
Parent interviews were open-ended to follow the lead of the informant who was telling her story but incorporated questions to cover research concerns, such as parent perception of the child, reaction to notification of suspected special needs and actions taken to help the child, including their experiences working with EHS and early intervention services. Parent interviews, lasting about 90 minutes, were audio taped and later transcribed. From our review of transcripts and records, we developed a matrix indicating the dates and outcomes of the relevant steps associated with the process for securing early intervention services. From a review and tally of the data, we developed Table 1 comparing outcomes for EHS and Comparison families on these steps toward early intervention services.
Results indicate that a larger number of EHS families were notified of a suspected need to refer, probably due to the involvement of another set of “educated eyes” (those of EHS staff) with their children (see Table 1). With the active encouragement of EHS staff, 18 of 19 (94 percent) EHS families followed through to make the referral to the Part C or Part B office, compared with only 9 of 13 (69 percent) Comparison families. (The county this project served requires that parents make the initial referral.) With the support of EHS staff, more program families persisted through the process so that a greater proportion of their children were evaluated and found eligible for services (see Table 1). The four Comparison families who obtained services had young children with complex medical issues, three of whom were already receiving early intervention services at the time of application to EHS. The EHS children represented a wider range of types of disabilities and severity levels, suggesting that involvement in EHS might empower families to become aware of their children’s developmental challenges and obtain services for developmental delays, not just for medically related disabilities.
| Group | Notification of Need |
Parent Referral* |
Evaluation Obtained* |
Child Found Eligible* |
IFSP or IEP Developed(+) |
Services Initiated(+) |
|---|---|---|---|---|---|---|
|
Program
|
19
|
18 (94%)
|
17 (89%)
|
15 (79%)
|
15 (100%)
|
13 (87%)
|
|
Comparison
|
13
|
7 (54%)
|
6 (46%)
|
4 (31%)
|
4 (100%)
|
4 (100%)
|
| *% of total notified +% of total found eligible |
In the second study, researchers analyzed four of the 32 case studies to determine how EHS service providers supported families to secure early intervention services and address barriers to improving their children’s lives. We selected these four cases for the diverse situations they present. When these families exited the program, we conducted additional interviews with their EHS staff to document the (a) extent to which children and their families had progressed and (b) ways in which EHS staff had worked with them. We analyzed interview transcripts and program and research records to create and revise categories of family characteristics, family needs and changes in needs, and EHS action in conjunction with the family. From the categories, we identified common themes and exceptions. We used the constant-comparative qualitative method to assess trends across cases (Glaser & Strauss, 1967).
Our analyses indicate that EHS staff actions were highly individualized to match each family’s needs. Nevertheless certain patterns emerged from their approaches. EHS staff always started by meeting the parents where they were in terms of their priorities. They recognized that, although their primary mission was the welfare of the focus child, low-income families might experience multiple barriers to addressing an individual child’s developmental issues over an entire family’s urgent shared needs. As they began to work with the focus child, they simultaneously earned trust and established relationships with the parents by assisting with problem solving and resource identification to address the basic family needs. With a foundation in this relationship, EHS staff were then able to help parents focus on the less familiar challenges central to their children’s development. In different ways according to parents’ abilities and emotions, EHS staff helped parents understand child development, recognize and accept their children’s unique challenges, comprehend that early intervention services might have something to offer and learn how to navigate the complex early intervention system.
The model that was the basis for EHS staff interactions with families oriented toward developing family problem solving skills. The goal was to provide information and scaffold steps in problem solving so that parents would internalize steps and apply them independently to solve future problems during the EHS years and thereafter. The method promoted action and reflection, so that families identified goals, developed plans, took action, and evaluated their progress.
Typically, EHS staff implemented one of two flexible service models: weekly home visiting or case management with EHS subsidized and supervised child care. In both, the individualized ways in which EHS staff supported different families seems illustrative of Vygotsky’s theory of sociocultural development (Vygotsky, 1978): EHS home visitors and case managers determined where the parents’ understanding or skills were, where they might be with assistance (zone of proximal development) and what specific supports it would take to help them grow. Staff then provided information and assistance incrementally, scaffolding on the knowledge and skills parents developed from one home visit or case management meeting to the next. The four cases illustrate scaffolding in both service models.
Following are summaries of each case to illustrate how EHS staff supported families:
Information Sharing
The Martinez family is comprised of a mother and father, both immigrants from South America, a 16-year-old son from the father’s first marriage, an 11-year-old son, and a daughter who was 7 months old when the family enrolled in EHS services. The mother came to the USA in late adolescence when she was working for a diplomatic family; she learned English from watching TV. The father completed high school and attended technical school in South America, however, since emigration has had difficulty learning enough English to pass the citizenship test. His limited fluency is a barrier to improving his career prospects, and it forces him to rely on his wife for much of his communication.
When the couple’s young daughter, the EHS focus child, was born, the father insisted that his wife quit her better paying job to care for the child. Although the mother agreed, this led to the family relying solely on the father’s limited income from restaurant work. By the time they came to EHS, they had been through bankruptcy and lost their home. The five of them were living in a tiny one-bedroom apartment leased in a friend’s name; they could afford only one meal a day. The parents’ efforts to keep the children quiet and restrict their movement, to deflect attention from the presence of so many people in a small apartment, probably contributed to the daughter’s delayed motor development. The child might also have been at risk due to the mother’s complicated pregnancy, a history of ear infections, inadequate diet, and eating problems. Subsequent evaluations revealed delays in growth, gross motor skills, speech-language and social and emotional development.
The EHS home visitor, a native Spanish speaker herself, established a bond with both mother and father from the outset. She encouraged the reticent mother, who had “never let her tears run,” to talk about the family’s difficult situation. She helped both parents see other options for solving the child’s and the family’s problems. Subsidized family child care might afford their daughter the social and emotional stimulation and play space to enhance her development, and the mother’s returning to work might also help the family. Similarly, the father grew to accept his daughter’s need for specialized care and his family’s need for a second income.
EHS staff educated and supported the parents across all areas of child rearing to address the daughter’s health needs, alter the home environment to provide parent-guided opportunities for gross motor development and assure more socializing experiences and encourage more speech. The mother was a bright and motivated learner, oriented toward improving her family’s future. She said, “The advice of how to make some goals. That’s what I really had help with from the home visitor. To have someone to motivate you and guide you is really important for me and as a family to move on. Having someone who is truly pushing you, like ‘you can do it if you want to do it,’ was really important.” The mother also welcomed the oral and written information the EHS home visitor shared and that she later pursued through the library. This enabled the home visitor to scaffold on her growing mastery from visit to visit as the mother took advantage of the sessions to discuss what she had read, try out new approaches and get feedback. The father was also involved in encouraging the child’s development but not to the same degree.
Encouraging collaboration with other key providers (medical, early intervention, child care) to enhance the little girl’s services was another approach the EHS home visitor took as she supported the parents to communicate with experts to expand their knowledge and influence their practices, e.g., an EHS nutritional consultant and pediatricians. With the home visitor’s encouragement, as the mother grew in confidence she overcame her hesitance to separate from her daughter. She gradually returned to work, starting as a substitute and then full-time childcare assistant for EHS. She has since gone on to earn her Child Development Associate credential and become a teacher.
Information sharing best describes the scaffolding method that worked to support this family. The mother, especially, understood the significance of the resources EHS was making available. Scaffolded information sharing became the foundation on which both parents built to become resourceful problem solvers on their daughter’s and, gradually, the family’s behalf. Information shared enabled the family to enhance their daughter’s gross motor development so significantly that she was deemed ineligible for early intervention services (although she later received services for speech and language delay). Trust in information sharing led the father to collaborate with the family child care provider and the case manager to develop a plan to reduce the daughter’s tantrums when he picked her up from child care. And, problem-solving skills developed through EHS interventions led the mother to suggest to their childcare provider that initiating a communication notebook might enhance provider-family collaboration.Task Analysis And Incremental Achievements
The Ramos are a family of four: the father, trained in Central America as a teacher, who is 11 years older than the mother; the teenage mother, the US-born daughter of an immigrant from the same region, and two sons, 3 years old and 3 months old at enrollment in EHS. The mother left home at 14 to move in with and later marry the father; she dropped out of school (special education) in 8(th) grade. She had never held a job. The father is self-employed, and the family was able to meet basic subsistence needs financially. However, the mother reported financial need, due to the father’s restriction on her use of funds rather than limited resources.
The EHS home visitor initially described the mother as a “moody, sensitive (17 year old) child” who was disorganized, unable to follow through consistently on a plan and so depressed and fearful she rarely left the house without her husband. She was unresponsive to her children, appeared to be emotionally insensitive to their needs, and lacked even basic knowledge about child development, nutrition, safety, and behavior management. In one early observation, the 3-year-old was playing outside, unsupervised, with clothing insufficient for weather conditions, despite the fact that he recently had been diagnosed with pneumonia.
EHS assigned the family a Spanish-speaking home visitor. The mother attributes to this factor and the home visitor’s weekly visits to the development of a relationship that allowed her to gain confidence in herself as a person and a mother:
We both talked the same language. ...She helped me. She was kind of like a friend. She came here. I think that was the first friend I had. She helped me in a lot of stuff, how to train the kids. I didn’t get to learn a lot of things with [my first child] than what I know with [my second]. Like toys. She teaching me about toys. What do they do, what do the kids learn with it, all those kinds of things. So I think I improved as a mother, too.
The home visitor reports that to meet the children’s needs it was crucial to focus simultaneously on the mother’s many personal issues. She also recognized that the mother learned best from concrete guidance through incremental steps because of her cognitive limitations. The father was initially involved in EHS activities as a “monitor.” He refused to let the mother meet with the home visitor without his presence. In response, she elected to appeal to his self-image as a businessman and involve him in decision making, determining that this would help him support rather than undercut her work. Over time, as he came to trust the decisions they reached together, he absented himself from meetings. The home visitor kept him posted about her activities. According to the mother, he became more actively engaged in household and parenting tasks.
Initially, the mother and EHS home visitor worked together to achieve concrete objectives in home safety, nutrition, parenting, and services for the children, as the home visitor also focused on helping the mother feel competent as a mother. Task analysis and the achievement of small successes were the foundation for scaffolding toward more independent problem solving in this case. The home visitor broke long- and short-term goals into consecutive shorter-term tasks and sequenced her direct instruction and modeling to scaffold on the successful accomplishment of each preceding task. For example, she accompanied and instructed the mother in community settings until she was comfortable going out alone; she not only gave her printed information but read it aloud to her and when she gave her recipes for nutritious foods, she cooked them with her. As the home visitor perceived that the mother was capable of acting independently, she withdrew her direct support. Over time, they also addressed communication skills, self-esteem, organizational skills, family roles and responsibilities, and ways to increase the mother’s financial and emotional independence (e.g., driver’s license, employment).
By the time the family “graduated” from EHS, the mother had a job that provided medical insurance for the entire family, held a driver’s license, had begun developing a network of friends and was managing work and household chores. The problem solving skills nurtured by the EHS home visitor’s task analysis and the mother’s scaffolded achievement of concrete, incremental objectives led her to recognize her youngest son’s need for special assistance and, despite the father’s initial opposition, pursue Child Find to secure special education services. The mother had become proactively child focused, independent, more able to solve problems, and oriented toward the future.
Teaching by Modeling
The Velasquez family is a married couple living with two children, a daughter (2. 9 years old) and an infant son (3 months old) at the time of application. The mother was a homemaker who babysat, and the father worked one full- and one part-time job. The family owns its own home. The mother was raised by relatives who have said little about her childhood, resulting in her knowing little about any developmental issues she might have experienced. As a young adult she provided child care for families that led her to the USA. The mother remains unhappy with her limited English speaking, reading and writing skills, and her inability to earn a driver’s license. The father emigrated at 15 to find work. He now speaks, reads, and writes English well.
When the family first began receiving EHS services, the home visitor noted that the mother was not fully engaged; she seemed “preoccupied.” Once the home visitor learned it was due to worries about the $10,000 hospital bill for the infant’s delivery, she resolved the issue by assisting the family to establish Medicaid eligibility. This bolstered her credibility and cemented her working relationship with both parents. She then focused most intensely on increasing child development knowledge and parenting skills: safety, nutrition, infant stimulation, anticipation of infant and toddler needs, speech and language development, motor development, play and socialization, behavior management, self-control and discipline.
Initially the home visitor saw the mother as highly stressed: “she was screaming, and she did not call her children with a voice that was appropriate.” Over the course of service, the parents’ growth in the program received high ratings. To work effectively with the parents, the Spanish-speaking home visitor assumed the role of teacher, identifying goals with the parents, then “talking with examples.” For every visit she developed a lesson plan centered on child development and parenting topics – fine and gross motor work, communication and language skills, socialization or behavior – and modeled activities to meet their goals using songs, games, play, books, puzzles, painting and coloring, sound and word repetition. The mother observed, then she and the home visitor practiced. Each lesson scaffolded on the previous week’s to stimulate, strengthen and reinforce the mother’s and the son’s skill development. When behavior and discipline were an issue, the home visitor modeled a calm voice and demeanor as the effective response. When the home visitor asked the father to be present, he followed his wife’s lead, observing and following the EHS home visitor’s example to learn to become more involved in the children’s daily routine, especially by reading to them. When the mother introduced the idea of developing her own business as a licensed family child care provider, the home visitor added that to her lesson plans. She modeled how to run a child care program by selecting a variety of child development activities and teaching the mother how to use them with her own children. She also taught the parents about the importance of structure, routines, choices, discipline, health, safety, and nutrition for the child care setting.
Also critical was the EHS home visitor’s flexibility. Although she had come to view the mother as highly involved and “open” to learning, she had her own ideas about how to handle her son’s language problems other than the formal early intervention route suggested by EHS. Low scores on the Denver and multiple Bayley tests led the home visitor to focus on referral, evaluation and services for language and communication skills; however, the family chose not to enroll their son, even though he was found eligible. Instead, the mother “called a meeting” with immediate and extended family living in the home, explained the language concerns, began sharing with them the skill development strategies she was learning from the home visitor and asked them all to get involved. The home visitor in turn supported this new direction. She began a systematic program to help the family prompt language development. The family continued its efforts even during an extended visit to their native country. Thus, while the parents opted out of early intervention services, they did apply their home-based EHS lessons toward child development goals. The family push had an effect: when Child Find appealed the family’s refusal of services, the re-evaluation found enough improvement that the boy was no longer eligible. A year later, when attention shifted to managing the son’s aggressive behavior, discipline and toilet training, disappointment with Child Find’s finding of ineligibility led them not to appeal the decision but to pursue further evaluation at a hospital where they had a positive experience with their daughter’s care.
Teaching by modeling and a flexible approach that adapts to new or changing goals proved to be the support strategies that worked best to guide the Velasquez family successfully through their EHS experience. By the time their direct support came to a close, they had begun to reflect on their experiences and tested their problem solving skills to treat their daughter’s health problems, resolve the son’s speech and language and evaluate his social and behavioral performance, develop differential child development knowledge and parenting skills, transition both children to Head Start Programs, resolve the family debt, access health insurance and launch the mother as an EHS-approved, licensed child care provider.
Learning by Doing
The Smithsons are a U.S. born Caucasian family of four: two young children (4-year-old son and 2-year 9-month-old daughter at enrollment); the mother, who has a severe medical problem that can limit her ability to care for her children and affects her memory, and the father, the family’s sole source of income, who has not graduated from high school and has trouble holding a steady job. At enrollment, the mother’s health was poor, the family had no regular source of income or health insurance, and they lived in a small apartment they were able to rent only by using someone else’s name to meet the income requirements.The Smithsons are the only one of our four cases that was assigned to child care and a case manager from the outset. Much of the EHS staff’s work centered on helping them learn to work the various systems that might improve their children’s lives.
In response to the children’s immediate needs, the case manager convinced the family to arrange free child care through EHS due to the danger the mother’s recurring medical problems posed for the children’s well being. She also supported the mother to expand her understanding of her maternal role beyond the simple physical care of her children. As the mother’s knowledge increased, the case manager responded by encouraging her to expand her role to manage more proactively the children’s nutrition and television viewing (i.e., decreasing exposure and violent content) and augment their opportunities for physical play and parent-child activities. The father also learned to be more involved with the children and supervise their television viewing.
Simultaneously, the EHS case manager guided the parents to manage their finances better and understand the resources and systems available to them. For example, the parents had been using credit cards to pay medical bills rather than taking advantage of free medical services available through their county, and they had failed to sign up for company health insurance when the father got a new job, because they did not understand the requisite deadlines and documentation. The EHS case manager researched and informed the family about the steps to take to subscribe to the health plan. She also accompanied them to an initial meeting with a multi-agency team that promised assistance with reducing their burdensome credit card debt.
From the outset, the mother responded well to the EHS case manager’s nonjudgmental approach. “A lot of stuff they talk to you about, you know ... [using] these terms [and] you are, like, okay, what language are you speaking? And, she’ll [the case manager] translate, and she’ll help me [by saying] ‘Let’s get that going.’ ... She keeps me on top of things.” Because she was aware of her son’s problems with physical aggression, especially toward his younger sister, she was open to the suggestion to contact Child Find. The father was defensive and resistant to the notion that one of his children might have some limitations, but he accompanied his wife and the EHS case manager to the Child Find meeting. Behind the scenes, the case manager helped Child Find staff frame their explanation of the son’s problems and their recommendations so that the father could accept the fact of his child’s difficulties and need for intervention. The case manager and the EHS supervisor for child care similarly scaffolded evidence to help the parents learn to differentiate between high quality and inferior child care and come to terms with the need to change child care placement when the initial arrangement deteriorated.
Learning by doing is an effective description of this family, especially the mother, as an EHS participant. The parents learned what to look for in child care from a bad experience. Scaffolding on what she had learned from her son’s developmental delays and behavior issues, the mother herself recognized her daughter’s developmental difference as she neared age three and alerted EHS staff about her concerns. Although they requested some assistance with the Child Find process, this time the mother worked through the appointments much more independently. And, when a problem arose with their apartment management company over the size of their unit for a family with mixed gender children, using resources the EHS case manager only suggested, the mother followed through to negotiate a resolution on her own. The family had begun to generalize the problem solving skills they learned as a result of EHS support.
Conclusion
The first study indicates that virtually all of the EHS families made referrals whereas only two thirds of comparison families did. EHS then showed greater retention with most completing the evaluation process, whereas only half of the comparison families completed this step. Similarly, a majority of EHS families were eligible for services and received them, as compared with only one-third of the Comparison families.
The second study illustrates critical features of the challenges faced by EHS workers in supporting families when their young children need or are suspected of needing early intervention. Prominent is the fact that these families faced multiple risks, which had direct or potential impact on child development. Families lacked the knowledge, skills, confidence, or resources to know how to diminish these risks at first contact. The “educated eyes” of EHS workers recognized the children’s needs and that the family’s status had direct bearing on child development. By establishing a valued professional relationship, including good communication that matched languages of parents and EHS workers, EHS provided interrelated support to families that keyed into their children’s development and still guided them to meet pressing basic needs.
Another striking aspect from the four cases is the unfamiliarity and difficulty of working the components of early intervention system for the low-income families. Between their own complex situations and the difficulty of working the system, it became apparent why low-income families are underrepresented among those obtaining early intervention services nationally and why professional support by EHS is necessary. EHS workers individualized their support as they helped each family learn about and accept their children’s developmental status and negotiate early intervention and other systems.
The cases highlight four styles by which families learned to solve problems with EHS scaffolding–learning by doing, information sharing, task analysis and incremental achievements, and modeling–and conscious instruction in the use of problem solving processes. They are illustrative, not exhaustive, of how EHS works and describe how EHS services can facilitate each family’s learning to solve problems systematically to enhance child and family development and independence.
References
Brooks-Gunn, J., Duncan, G.J., & Maritato, N. (1997). Poor families, poor outcomes: The well-being of children and youth. In G.J. Duncan, & J. Brooks-Gunn (Eds.), Consequences of growing up poor (pp. 1-17). New York: Russell Sage Foundation.
Corso, R.M. (2000). Early Head Start and early intervention: A collaborative approach to serving infants and toddlers with disabilities in natural environments. Unpublished doctoral dissertation.
Glaser, B. & Strauss, A.L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago: Aldine.
Individuals with Disabilities Education Act Amendments of 1997. (P.L. 105-17). 20 U.S.C. Chapter 33.
Sherman, A. (1998). Poverty matters: The cost of child poverty in America. Washington, D.C.: Children’s Defense Fund.
Spiker, D. (2001) Early intervention: What services for whom? Presentation at the 17(th) Annual DEC Conference on Young Children with Special Needs and Their Families, Boston, MA.
Summers, J.A., Steeples, T., Peterson, C., Naig, L., McBride, S., Wall, S., Liebow, H., Swanson, M., & Stowitschek, J. (2001). Policy and management supports for effective service integration in Early Head Start and Part C programs. Topics in Early Childhood Special Education, 21, 16-30.
Vygotsky, L. S. (1978) Mind in Society: The development
of higher psychological processes.
Cambridge, MA: Harvard University Press.
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