URLEND LEADERSHIP RESEARCH PROJECT1
URLEND Leadership Research Project: Utilizing the Learn the Signs, Act Early program to Teach WIC clients in Provo County about Healthy Child
Carrie Hall, M.Ed.
University of Idaho
Lisa Milkavich, PT, DPT
University of Utah
Margaret Kluthe, M.D.
University of Utah
Tracy, Golden, Ph.D., M.Ed.
Utah Valley University
Abstract
Early identification of developmental delays and autism is pivotal in helping children who are falling behind in their ability to interact with others or learn. Screening, evaluation, enhanced learning opportunities, and intervention services should be provided for children that fall into this category. Research supports the concept that it is better to begin intervention early rather than ‘waiting to see’ if the child ‘grows out of’ his or her problems (NJCLD, 2007).
The identification of language, communication, and social delays in children between the ages of one and three years is inadequate; only about 30% of children with developmental delays are identified before they enter school. The Centers for Disease Control and Prevention (CDC) initiated the ‘Learn the signs. Act Early’ program to increase recognition of signs of autism, and the American Academy of Pediatrics (AAP) also has promoted use of screening for autism and developmental delays. However, identification often occurs late for optimal intervention windows.
This project explores the use of an education tool created by our team and offered through the Women, Infants and Children (WIC) nutrition program through their on-line education program.
URLEND Leadership Research Project: Utilizing the Learn the Signs, Act Early program to Teach WIC clients in Provo County about Healthy Child
The optimal time to impact developmental delays and autism spectrum disorders is during the infant, toddler and preschool years. This is when rapid brain development is occurring, communication and social skills are being acquired, and family dynamics are being established. Unfortunately, developmental delays and early signs of autism are often diagnosed too late for the early intervention programs, especially among minority groups, as discussed below (Guarino, 2010). Therefore, new means for identifying at-risk children and linking parents to resources are being explored, including educating mothers enrolled in the Women, Infants & Children Nutrition Program (WIC). This paper will explore these topics and describe our project to develop teaching modules for WIC mothers about early signs of developmental delays and/or autism, drawing on the Centers for Disease Prevention and Control’s (CDC)‘Learn the Signs. Act Early.’ program.
Early intervention programs for children from birth to age three are mandated through the Individuals with Disabilities Education Act (IDEA), and special education preschools for children age three to five are available through the school districts. Children with milder delays receive the greatest benefits from early intervention (Campbell, 2002). For instance, high risk, low-birth weight infants who were enrolled in an early intervention program had higher cognitive scores at age three (JAMA, 1990) and better school outcomes at age eight compared to those who did not receive intervention services (McCarton, 1997). Unfortunately, less than 2% of infants and toddlers and less than 5% of preschoolers are enrolled in these programs (Ramy, Bailey), although about 11 to 18% of school-age children need services for a developmental or behavioral disability.
Autism spectrum disorder (ASD) affects social and communication skills. Children with autism have impaired social responses, fail to engage in normal imitation and imaginary play, and have difficulty understanding and communicating with others (DSM IV). Many children have difficulty coping with daily activities which may result in crying and/or aggression. Early behavioral programs have been effective in modifying many social, language and behavioral deficits and have improved children’s later school and social behaviors. One study found that 3% to 25% of children diagnosed with ASD and treated in a behavioral program were later able to attend regular school classrooms without an assistant, and some no longer met criteria for ASD (Helt, 2008). Signs of autism can be recognized between 9 and 24 months, but autism is usually not diagnosed until age four, giving less opportunity for early behavioral therapy.
Demographics can be a barrier to early identification for children with special needs. Guarino, Buddin, Pham, and Cho (2010) investigated how early identification, prior to kindergarten entry, varies by demographic characteristics. According to their study, little is known about the factors related to timing of special needs identification which led the authors to investigate whether timing of being identified prior to or after kindergarten relates to the child’s demographics. A primary question was which types of children are less apt to be diagnosed with special needs? Can these children be attended to before kindergarten? The researchers used data from a database in California called California Special Education Management Information System (CASEMIS), which was collected by the Special Education Division of the CDE. This data includes all students identified with special needs and receiving special services through CDE. Some of the study’s findings included systematic demographic differences in early identification in California.
According to the data, girls were less likely to be identified early compared to boys. Another finding is that African American children were less likely to be identified as compared to other racial/ethnic groups. Children with parents who were learning English as a second language were less likely to be identified early, compared to children in English-speaking families. Lastly, foster care children are more likely to be identified compared to children living with their parents. Each of these findings led to different hypotheses and implications for further study. However, the findings could lead to improving screening, assessment practices, supports, and more outreach opportunities to reach all populations.
As a result of the previously mentioned evidence supporting early detection and early intervention, the United Stated Government formally created the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) through an amendment to section 17 of the Child Nutrition Act of 1966 on September 26, 1972 (Public Law 92-433). The Special Supplemental Nutrition Program for WIC provides Federal grants to States for: 1) supplemental foods, 2) health care referrals, and 3) nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk (
Hundreds of peer reviewed research projects have looked at the effectiveness of WIC programs across the United States in: 1) providing nutritious foods and, 2) instilling knowledge of nutritious food choices upon its participants. There appears to be significantly less research investigating the effectiveness of WIC in providing health care referrals for its clients. In the late 1990’s, the US Department of Agriculture (USDA) provided funding to develop a program called StampSmart. This project’s objectives were: 1) improve parent knowledge of nutrition; 2) improve self-efficacy for choosing healthful foods; and 3) improve dietary behaviors. The USDA then funded a follow-up project called ‘FoodSmart’ to test the efficacy of interactive, tailored, nutrition education for low-income families participating in WIC (Campbell, 2004). Our team intends to apply the information gained from these two programs to the realm of early identification and healthcare referrals.
Recently there has been an increase in the diagnosis of individuals with autism spectrum disorder (ASD) and of the public’s awareness of this disorder. ASDs occur in all racial, ethnic, and socioeconomic groups, but are almost five times more common among boys than girls. The U.S. Centers for Disease Control and Prevention estimates that about 1 in 88 children have an autism spectrum disorder ( As a result, several autism-related groups have influenced the passage of significant legislation and autism has become one of a very few disorders to be identified by name in U.S. healthcare legislation. This group feels the diagnosis of autism should be attended to by the Special Supplemental Nutrition Program for WIC under its second responsibility, to assist in health care referrals.
The WIC program in Utah County has a system in which participants complete on-line educational modules to earn WIC credits so they can receive nutritional vouchers. Currently, they do not have a module on developmental milestones and autism for children 9 to 36 months of age. In conjunction with the Centers for Disease Control and Prevention's (CDC) "Learn the Signs. Act Early." (LTSAE) program, our leadership project developed educational modules that are culturally and socioeconomically relevant in the areas of developmental milestones and autism (Perez-Escamilla, 2010). We intend for these modules to become a sustainable means to provide participants basic knowledge in these two areas.
The modules could help low-income mothers of children up to age five, who are at nutritional risk, understand what behaviors should be reported to their primary care clinician (i.e. potentially a parent screening tool for autism) and/orconnect caregivers who have concerns about their children's development with local resources (via the United Way ‘Help Me Grow’ program in Provo, UT).
Methodology/Program Overview
Participants
Currently, the Utah County WIC program serves about 15,000 clients (including caregivers and their children). Admittance into the WIC program is available to all residences of Utah County who qualify financially and meet the following requirement: Caregivers are required to complete an education component four to six times per year to receive nutrition vouchers either in person or complete them online. The modules developed through this project will be made available on the Utah County WIC website. All members of the Utah County WIC program (with internet access) have access to all educational modules on the website.
In 2003, Utah County WIC demographics were as follows:
Languages spoken in households servedClinic / English / Spanish / Another language / % speaking Spanish
Provo / 2,390 / 750 / 50 / 23.5%
Orem / 1,733 / 5578 / 0 / 24.8%
Payson / 850 / 182 / 3 / 17.6%
American Fork / 1,064 / 93 / 3 / 8%
Measures and Procedures
This project used the Centers for Disease Control and Prevention's (CDC) "Learn the Signs. Act Early" (LTSAE) to create innovative, on-line modules on child development, including language, social and communication milestones.
We worked to collaborate with Utah County WIC leadership to select appropriate content, and collaboration with the Provo ‘United Way Help Me Grow’ leadership to establish links between online classes and community resources was planned. Modules were created in English, with Spanish translations planned, reflecting community demographics. Pre and post-class quizzes to assess knowledge gains for participating WIC clients were developed to monitor completion and learning as clients are required to take a quiz and show a certificate of completion to prove fulfillment of the education requirement. Finally, we planned to use WIC’s website to track the number of clients who completed our modules and to compare their pre & post test to determine if learning occurred.
We created modules for six age groups addressing expected milestones for language and communication, cognitive, social-emotional and physical development. We chose the ages of six, twelve, and eighteen months and ages two, 2½ and three years. In our modules we included: 1) an explanation of what development is, 2) a pretest using ‘true’ and ‘false’ questions, 3) an education section using simple text and interesting pictures covering milestones. The milestones we addressed were social and emotional development, language and communication, cognitive and problem solving skills, movement & physical development, and behaviors that suggest a child needs additional evaluation, 4) a true and false post-test, 5) and resources for more information and further evaluation. Some of the resources that were recommended were scheduling an appointment with pediatrician or health care provider, Help Me Grow program through United Way, Early Intervention, and LTSAE website.
Results
Our project encountered significant challenges. A brief summary of what transpired follows: 1) there were significant delays in communications between our team and WIC, 2) the contact person at WIC changed a couple of times, 3) with the changes in contacts, WIC seemed to lose track of who we were and what our project was. When long awaited feedback on the newly ‘drafted modules arrived, it was too late in the process to change direction and meet the newly stated needs of WIC. Therefore the group was unable to accomplish our original goals of posting educational modules on the WIC website and collecting data on the effectiveness of the modules.
This leadership team had to abandoned the initial plan to use the new modules on the Provo WIC site and are currently exploring other venues: We now plan to offer the modules to ‘Help me Grow' through the United Way program in Utah County and also submit them to LTS-AE for posting on or linked to their ‘user board’.
There was no data on the usage of these modules, or on pre & post-test analyses collected, as they were not posted or used.
Discussion
Unfortunately, this leadership team was unable to publish the newly developed education modules on WIC’s website and therefore was not able to collect data. There are no findings in relation to the original hypothesis or project purpose at this time. However, there are many venues where PowerPoint modules on early childhood development and signs of autism could be utilized. The team now plan to offer the newly developed modules to ‘Help me Grow' through the United Way program in Utah County and also submit them to LTA-AE to be posted or linked to their user board. The team is very enthusiastic about these uses, and will continue to explore other possible uses for these modules.
This project has given its team members first-hand experience in the challenges of working with a large government organization utilizing emails, voice messages, and limited phone interactions. The significant miscommunications that can occur due to rotating the contact person within an organization were also experienced. The difficulties aside, this team developed a culture of trust and open communication that allowed for a cohesive work environment across disciplines and state boundaries. Depending heavily on modern communication technologies such as email, Google Chat, and Drop Box made this experience in interprofessional leadership skills possible. The team promoted open discussions of ideas, shared problem solving and ultimately achieved amazing team cohesiveness. Even though two members were in Salt Lake City, Utah and one in Idaho, demographic splintering was avoided by establishing early in the process that decision-making would require all members’ input. Therefore important discussions were held only when all members could participate (via Google Chat and/or email).
This project has had challenges, creativity and teamwork. Although we are disappointed in the drastic changes that occurred in the final chapters of the project, all team members feel confident that the newly developed modules will eventually land in a setting in which they will foster excellence in service provision for children and youth with special health care needs and their families. The team intends for the new modules to eventually be used in a way they will contribute to families understanding of early childhood development and signs of autism.
References
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