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Central Directory of Resources
Research and Demonstration Projects in North Carolina

Projects that have Significance for the Education and Training of Infants and Toddlers with Developmental Needs and Their Families

February 2010

1. Maternally Administered Interventions for VLBW Infants

Although many in-hospital interventions to reduce the incidence of developmental problems in preterm infants have had positive short-term effects, relatively little is known about their long-term effects, the relative advantages of different interventions, or which infants benefit most from which interventions. This study will examine the short- and long-term effects of two maternally administered interventions for very-low-birthweight (VLBW) preterms on infant health and development, maternal psychological well-being, and the maternal-child relationship, in comparison with a control group and with each other. The two interventions have been shown to be safe and have positive immediate effects for preterms: the auditory-tactile-visual-vestibular (ATVV) intervention and kangaroo care. Comparing the interventions will enable us to determine the relative importance of the direct effects of the interventions on the infant and the indirect effects through the mother.

Study location: UNC Neurodevelopmental Disorders Research Center, Carolina Institute for Developmental Disabilities – Chapel Hill
Date found: 2/5/10

Can be found at: http://www.fpg.unc.edu/~ndrc/projects/index.cfm?ID=155

Project Duration: 9/30/2005 – 6/30/2010

2. Early Intervention for Children Who Are Deaf or Hard of Hearing: Current Trends in Service Provision and Access

While universal newborn hearing screening (UNHS) has led to earlier diagnosis and intervention for some families of children with hearing loss, others struggle to attain desired services based on the unique needs of their child or family. Previous survey research has revealed disparities in the provision of follow-up care for infants and toddlers with hearing loss; however, these studies were conducted prior to the full-scale implementation of UNHS and rising prevalence of cochlear implantation. At present, all efforts to examine the receipt of family-centered follow-up care occur at the state level or incorporate biased sample selection methods. The proposed study will describe the current status of early intervention services for families of children who are deaf or hard of hearing across a representative sample of several states. It will also examine how child factors (e.g., age of access, type/severity of hearing loss, hearing technology) and family factors (e.g., communication approach, perceived social support) relate to the access of desired services. The findings from this project will enhance collaboration among various stakeholders (e.g., program coordinators, clinicians, families) and identify priorities to improve the access of comprehensive and coordinated follow-up care for families of infants and toddlers with hearing loss. In a mail and web-based survey of caregivers of infants and toddlers with hearing loss, the proposed project will investigate the following questions: 1. What are the current trends in ‘age of access’ to diagnostic and intervention services for infants and toddlers with hearing loss across a range of states? 2. How do parents’ reports of early intervention services differ based on their child’s use of hearing technology? 3. How do parents’ reports of early intervention services differ based on their level of perceived social support and the communication approach they use with their child?

Study location: Allied Health Sciences, UNC – Chapel Hill
Date found: 2/12/10

Can be found at: http://cfx3.research.unc.edu/grantsource_abstract/ (Search Toddler)

Date Entered: 1/30/2009

3. ARRA - Home TEACCHing Program for Toddlers with ASD

It is a common belief and practice that early intervention results in better child outcomes. Yet, these claims are difficult to substantiate for children with ASD as currently there are no published randomized studies on interventions started in early toddlerhood for this population. The purpose of this study will be to examine the immediate effects of Division TEACCH’s home-based approach for young toddlers with autism (Home TEACCHing Program, HTP), as compared to a services-as-usual control group. Using a randomized experimental design, 60 toddlers (ages 18-35 months) will be assigned to the 12-week HTP or to the control group. Toddlers will receive a battery of assessments designed to assess the relative growth or change in developmental skills and adaptive behavior that are the focus of the HTP treatment, as well as decrease in problem behaviors. Toddlers assigned to the HTP will receive 90 minutes of intervention per week facilitated by TEACCH therapists with additional parent training and homework designed to boost the intensity of the intervention. The manualized intervention will focus on teaching the tenets of structured teaching and the use of those tenets to increase toddler communication and social interaction. Fidelity data will be collected on therapist and parent implementation. Mixed model regression analyses will be used to examine the effects of the HTP on child outcomes at post-test, as well as the variables that may mediate and/or moderate those outcomes.

Study location: Frank Porter Graham Child Development Center – Chapel Hill
Date found: 2/17/10

Can be found at: http://cfx3.research.unc.edu/grantsource_abstract/ (Search Toddler)

Date Entered: 5/4/2009

4. Promoting Early Social-communicative Competency in Toddler with Autism

This research proposal is in response to the topic Early Intervention and Treatment of Autism Spectrum Disorders (ASD). The purposes are to refine and implement an early intervention home-based intervention protocol to promote early social-communication competency in toddlers with autism and to assess the relationship between the intervention and targeted child outcomes, answering the question of whether the intervention is effective in promoting joint attention. The proposed Joint Attention Mediated Learning (JAML) model is based on empirical knowledge of early development in autism. Parents will mediate child learning to promote joint attention, an early nonverbal social-communication competency that typically emerges by age 12 months but fails to develop naturally in toddlers with autism. Research demonstrates the importance of joint attention as a building block for language, social, and cognitive development. Acquiring joint attention competency can give toddlers with autism an important advantage for later success, and improved results are expected with earlier intervention. New early screening protocols are beginning to identify children with high risk for autism at younger ages. The result is a need for cost effective and developmentally appropriate models effective for toddler-aged children. Because children with autism are not yet widely identified in the toddler years, research must be dispersed across sites.

Study location: Frank Porter Graham Child Development Center – Chapel Hill
Date found: 2/18/10

Can be found at: http://cfx3.research.unc.edu/grantsource_abstract/ (Search Toddler)

5. Early Development Project

Recent research on genetics and early development allows for the identification of infants and toddlers that may be at risk for later diagnosis of various developmental disabilities including autism. Early identification then presents opportunities to work with these young children and their families during a critical period in development. The Early Development Project, funded by Autism Speaks, seeks to address issues of both early identification and early intervention and has two primary aims:

  • To screen 12-month-old infants in central North Carolina to identify those that may be at high risk for an eventual diagnosis of autism or other developmental disability, and
  • To compare effects of an intensive 6-month relationship-focused intervention to a community services-referral condition, using a randomized controlled study.
The initial screening is accomplished at 12 months of age using the First Year Inventory (FYI), a parent report measure developed by our research team at UNC. The FYI is designed to identify risk factors in two important domains of development: Social-Communication skills and Sensory-Regulatory functions. Following the initial screening, parents of infants with elevated risk scores on the FYI are invited to participate with their child in a comprehensive developmental assessment at our laboratory at UNC. Study location: Department of Allied Health Sciences, UNC – Chapel Hill Program for Early Autism Research, Leadership & Service (PEARLS)
Date found: 2/19/10

Can be found at: http://www.med.unc.edu/ahs/pearls/research/early-development-project

6. The Infant Behavior Project (IBP)

This project analyzes videos of the infancy period (9-18 months) to determine what specific infant behaviors are precursors of established sensory response patterns in the preschool/school-age years, and to what extent they predict other developmental and functional outcomes. In July of 2008, IBP was subsumed by the Sensory Experiences Project as Study 2, the Developmental Study of Infants.

The target enrollment is 109 children with autism (48), development delay (25), and typical development (36). The children will have video footage at two time points¬¬ -- one in early infancy (9-12 months) and one in later infancy (15-18 months).

Study location: Department of Allied Health Sciences, UNC – Chapel Hill Program for Early Autism Research, Leadership & Service (PEARLS)
Date found: 2/19/10

Can be found at: http://www.med.unc.edu/ahs/pearls/research/infant-behavior-project

7. Predicting Useful Speech in Children with Autism

Funded by the National Institute of Deafness and Communication Disorders (R01 DC006893)

This project is a collaborative project with Drs. Paul Yoder and Wendy Stone of Vanderbilt University. The purpose of the research is to determine what variables best predict the later language outcomes of young children with autism spectrum disorders. We are examining both child variables and parent-child interaction variables as possible predictors. The child variables include: (1) intentional communication acts; (2) ability to follow the attention cues of other people; (3) attention to speech directed by adults to the child; (4) object play skills; and (5) motor skills. The parent-child interaction variables include: (1) the extent to which the parents put into words what their child is communicating nonverbally; (2) the frequency with which parents comment on things to which their child is paying attention; and (3) the consistency with which parents respond to their child’s communication. We are recruiting a total of 70 initially nonverbal young children with autism spectrum disorders (ASD), 35 from North Carolina and 35 from Tennessee. All the children will be under 3½ years of age at the time they begin the study. Each child will be assessed at five 4-month intervals, so we can examine the predictors of developmental changes in the children’s language skills across a 16-month time period. The results of this study will help identify possible early intervention goals and strategies that may improve the effectiveness of communication intervention with young children with autism spectrum disorders.

Study location: Department of Allied Health Sciences, UNC – Chapel Hill Program for Early Autism Research, Leadership & Service (PEARLS)
Date found: 2/19/10

Can be found at: http://www.med.unc.edu/ahs/pearls/research/predicting-useful-speech-in-children-with-autism

8. Infant Attention

Dr. Steve Reznick, graduate student Jed Elison, post-doctoral fellow Deb Childress, and lab manager Barbara Goldman are developing laboratory procedures for assessing working memory and endogenous attention in infants and toddlers. These cognitive abilities underlie many important aspects of social and cognitive development. Assessment of working memory and endogenous attention in infants and toddlers who eventually develop ASD may explain symptom patterns and also provide important targets for early intervention.

Study location: Department of Allied Health Sciences, UNC – Chapel Hill Program for Early Autism Research, Leadership & Service (PEARLS)
Date found: 2/19/10

Can be found at: http://www.med.unc.edu/ahs/pearls/research/infant-attention

9. Grip Reactions and Anticipatory Control in Special Populations

Development of motor function has been rarely studied in people with autism. Although not considered to be part of the core symptoms of autism, a variety of unusual motor features is common in this population and interferes with adaptive behavior (Filipek et al., 1999; Leary & Hill, 1996). Current neurological theories propose abnormalities in the brain. Recent studies conclude that subjects with autism show impaired coordination and anticipatory control while grasping with the thumb and index finger (David, Thorpe, Giuliani, Baranek, & Mercer, submitted) and while reaching out to grasp an object (Mari, Castiello, Marks, Marraffa, & Prior, 2003). Even though these studies provide insight into motor patterns in subjects with autism, they fail to a) address the development of these patterns, b) do not include comparisons with other developmental disabilities, and c) match comparison subjects on chronological age instead of mental age.

This study addresses these limitations by analyzing the development of grasp using a cross-sectional methodology with younger samples (i.e., children ages 2 - 6 years), and including a comparison group of children with other developmental disorders matched on mental age to isolate findings that are unique to autism, separate from mental retardation. We will test hypotheses surrounding the specificity of motor deficits in children with autism, and will provide insight into the development of coordination and anticipatory control during grasp patterns in young children. Our specific aims are to:

  • Examine developmental progression of motor coordination and anticipatory control during a grasping task in children with autism ages 2 through 6 years, and
  • Determine motor coordination and anticipatory control deficits that are unique to autism through comparison with mental-age matched children with developmental delay and typically developing controls.
Study location: Department of Allied Health Sciences, UNC – Chapel Hill Program for Early Autism Research, Leadership & Service (PEARLS)
Date found: 2/19/10

Can be found at: http://www.med.unc.edu/ahs/pearls/research/grip-reactions-and-anticipatory-control-in-special-populations

10. Home-based Functional Communication Training for Infants and Toddlers with Autism

The proposed project will develop and test the feasibility of implementing Home-based Functional Communication Training (H-FCT), an intervention that targets the communication deficits and challenging behaviors of toddlers with or at-risk for autism spectrum disorders (ASD). In this model, early intervention (EI) providers working for the state Part C system will serve as co-interventionists who team with caregivers of children with ASD to implement H-FCT in the home. This development project will involve EI providers working for the Part C system in the states of North Carolina and Kentucky, and caregivers of toddlers with ASD residing in those same states.

The H-FCT intervention is targeted to infants and toddlers with or at-risk for ASD between the ages of 18 – 35 months. The investigators of this project will develop the H-FCT intervention to improve the communication skills and reduce the challenging behaviors of infants and toddlers with or at risk for ASD.

Study location: Department of Allied Health Sciences, UNC – Chapel Hill Program for Early Autism Research, Leadership & Service (PEARLS)
Date found: 2/24/10

Can be found at: : http://cfx3.research.unc.edu/grantsource_abstract/ (Search: infant & toddler)

Date Entered: 9/24/09

11. BKISED Birth Kindergarten: An Enhanced Collaborative Model

Purpose: This project will prepare graduate level personnel to work with young children in inclusive settings with an emphasis on children with disabilities. Specifically, this project will: (a) recruit for application to the program students with disabilities or those who have family members with disabilities, and students from underrepresented populations; (b) provide a high quality interdisciplinary training program based on federal, state, and local standards for young children and develop and embed training activities and experiences throughout the program, including relevant case studies, information sharing from professional collaborators through co-instruction, hands on experiences, and family-centered field-site experiences, especially in inclusive high poverty and inner city settings that serve a high number of English Language Learners (e.g. early intervention programs, public schools in low poverty areas); (c) develop a collaborative partnership with community experts (professional collaborators) in the identified disability areas who will serve as co-instructors, mentors, and field-site placements; (d) develop and implement a mentoring program for retaining personnel working with young children with disabilities; (e) disseminate the preservice model that infuses the identified disability areas within a family-centered framework to other institutions of higher education, especially in North Carolina; and (f) evaluate the impact on trainees and the overall project effectiveness.

Products: Over the 4 years of this project it is anticipated that 27 new professionals will be trained to work with birth-kindergarten children with and without disabilities with an emphasis on children from culturally and linguistically diverse populations.

Study location: NECTAC at Frank Porter Graham Child Development Center – Chapel Hill
Date found: 2/25/10

Can be found at: http://www.nectac.org/search/projdetails.asp?ProjID=1385

Funding Dates: 2007 – 2010

12. CONNECT: The Center to Mobilize Early Childhood Knowledge

Purpose: This project is designed to address the need for highly qualified personnel in special education, related services, early intervention, and early care and education to work with young children with disabilities (aged 0-5) and their families. The aim is to develop, validate, and disseminate evidence-based resources, including training modules, for use by providers of professional development (PD) who provide training to the targeted constituent groups.

Products: It is expected the Center will: (a) increase the competence of PD providers in designing, delivering, and evaluating evidence-based approaches; (b) increase the knowledge and skill-based learning of early childhood practitioners, families, and PD providers; (c) increase the ability of early childhood practitioners and families to make evidence-based practice decisions about teaching and intervention dilemmas that arise in daily practice; (d) increase connections and support among PD providers to enhance their ongoing professional growth; and (e) provide an easily navigable, accessible Web site where a broad national and international audience of PD providers and individuals can access free, high-quality PD materials, targeted technical assistance, and other supports.

Study location: NECTAC at Frank Porter Graham Child Development Center – Chapel Hill
Date found: 2/25/10

Can be found at: http://www.nectac.org/search/projdetails.asp?ProjID=1455

Funding Dates: 2008 – 2012

December 2009

1. Development of a Staging System for Infantile Krabbe's Disease

The purpose of this study is to develop a staging system to define the progression of infantile Krabbe disease. Results of head MRI findings, tests of how the brain responds to hearing and vision will be integrated with information obtained from evaluations of how the infant learns to solve problems, communicate, socialize and behave will be integrated. Other variables such as how the muscles respond to nerve impulses will be integrated with motor development. These variables will be measured at repeated intervals to detect disability progression. This way the significance of each variable will become apparent. Understanding the process will allow us to identify the stages of progression.

Study location: Clinical Center for Development and Learning, Carolina Institute for Developmental Disabilities – Chapel Hill
Date found: 11/4/09

Can be found at: http://www.cdl.unc.edu/projectKrabbesDisease.aspx

2. Neurological Behavioral Effects of Cocaine use in Mother-Infant Dyad (CAMID)

Although maternal cocaine use is highly correlated with neglect and poorer mother-infant interactions, there is little research on its effects on perceptual, endocrine and neurological responses of mothers to relevant infant cues or abnormal physiological/behavioral responses of infants prenatally exposed to cocaine that may affect elicitation of parenting. This project is a multidisciplinary, translational research endeavor involving animal and human studies to focus on the neurobiological and behavioral characteristics of mothers who have used cocaine during pregnancy and characteristics of offspring prenatally exposed to cocaine. The CAMID program will identify common cocaine-related effects in both models that might impact maternal-infant relationships.

Study location: UNC-School of Medicine-Chapel Hill
Date found: 11/4/09

Can be found at:http://www.cidd.unc.edu/Research/default.aspx?id

3. Fragile X Center

In 2008 UNC-CH received funding from the NICHD for a 5-year continuation of a Fragile X Syndrome (FXS) Research Center focusing on family adaptation to FXS. Investigators from UNC, RTI International, the University of Kansas, and the University of Wisconsin are collaborating on three integrated studies: (1) Maternal Responsivity and the Development of Children with FXS; (2) Adaptations of Families of Adolescents and Adults with FXS; and (3) Family Adaptation to Newborn Screening for FXS. Investigators will use biologic samples, direct observation, speech samples, daily diaries, surveys, and semi-structured interviews to understand how families across the lifespan adapt to having a child with FXS.

Study location: Carolina Institute for Developmental Disabilities, UNC-Chapel Hill
Date found: 11/4/09

Can be found at:http://www.cidd.unc.edu/Research/default.aspx?id=36

4. Early Intervention Training Center for Infants and Toddlers Who Have Visual Impairment

This project has been completed

The aim of this five-year project is to develop resources that build the capacity of colleges and universities to prepare personnel to serve infants and toddlers with visual impairments/blindness and their families. Interactive multimedia training modules developed in partnership with faculty members, consumers, and service providers will be useful for preparing early interventionists across multiple disciplines.

The goals of this project were: (1) To form partnerships with faculty to share knowledge, skills, and resources to build their capacity to prepare personnel to serve infants/toddlers with VI/blindness, (2) To develop and disseminate modules that are family-centered, based on recommended practice, flexible, and accessible, and (3) To develop a web site that provides access to project resources.

Study location: Frank Porter Graham Child Development Institute
Date found: 11/4/09

Can be found at: http://www.fpg.unc.edu/projects/project_detail.cfm?projectid=255

5. Partnerships for Inclusion: Early Intervention

Partnerships for Inclusion promotes the inclusion of young children with disabilities, birth through five years, and their families in all aspects of community life. PFI is a statewide technical assistance project with offices in the western, central and eastern regions of North Carolina.

Project staff work closely with a variety of individuals and groups. Typically these include public schools, child care resource and referral agencies, Children's Developmental Services Agencies, More at Four programs, community colleges, inter-agency councils, and Smart Start partnerships. Funded by the Public Schools of North Carolina (Part B, Section 619), the Department of Health and Human Services (Part C and Child Care Development Block Grant), and The Office of School Readiness (More at Four), PFI offers an array of services. These include consultation around strategic planning and program evaluation issues, resource linking, intensive training in an on-site consultation model to improve early childhood program quality, and a variety of other professional development activities promoting knowledge and skills related to early childhood inclusion.

Study location: Frank Porter Graham Child Development Institute
Date found: 11/4/09

Can be found at: http://www.fpg.unc.edu/projects/project_detail.cfm?projectid=254

6. Quality Interventions for Early Care and Education (QUINCE)

This project has been completed

QUINCE is a multi-state (North Carolina being one) study of two assessment-based, individualized, onsite consultation models: the Partnerships for Inclusion consultation model and the Ramey Immersion Training for Excellence consultation model. Consultation consists of training for child care providers and teachers in centers and homes but has a special emphasis on providers in family child care homes. The goal of QUINCE is to determine the conditions under which very specific consultation models of training enhance the quality of the family home or child care classroom and also result in positive child change.

NC Counties served:  Alamance, Wake
Study location: Frank Porter Graham Child Development Institute
Date found: 11/4/09

Can be found at: http://www.fpg.unc.edu/projects/project_detail.cfm?projectid=368 OR www.fpg.unc.edu/~quince/

7. The Autism Research Program Research opportunity for families

The Autism Research Program in the Carolina Institute for Developmental Disabilities (CIDD) at the University of North Carolina at Chapel Hill is offering an exciting research opportunity to families of children with autism. This study, which is funded by the National Institutes of Health with the direction of Joseph Piven, M.D., is being conducted by some of the world's leading researchers in the field of autism at four different sites across the U.S. Currently, we are searching for 100 participants in the Southeastern U.S. who meet the following criteria:
  • Are between ages birth to 12 months (mothers who are expecting also may be eligible)
  • Have an older sibling diagnosed with an ASD
Once a family is enrolled in this study, they will travel to Chapel Hill, N.C. for a comprehensive series of developmental, noninvasive assessments, to be completed on the infant sibling at six, 12 and 24 months. During this trip, the infant also will receive an MRI scan while asleep.

There is no cost for family participation. All travel and lodging costs are reimbursed bythe study, and any services the study provides are at no charge to the family. Families will receive feedback about the assessments. The family also will receive $50 for each assessment completed and $50 for each MRI scan completed on the infant sibling.

The goal of this study of brain development in infants at risk for autism is to increase our understanding of how the brain develops and to look for abnormal patterns of brain growth. There are surprisingly few large-scale studies of brain development in autism over time. There are even fewer that look at brain development in infants and very young children. With your support we will be able to investigate more thoroughly the initial stages of significant brain overgrowth. We will use newly developed assessment tools to help us identify infants at high risk for autism. Through the use of MRI technology we will capture images of the brain and perform sophisticated brain measurements. The data gathered in this study will provide important information regarding early brain development in autism, which may in turn provide clues that will eventually result in early interventions and improve outcomes for children with autism.

Study location: Carolina Institute for Developmental Disabilities
Date found: 10/09

Can be found at: http://www.marcus.org/menus/documents/e-NL/100609.pdf OR http://www.marcus.org/Menus/Documents/IBIS_UNC_Brochure_6.3.08.pdf

8. The National Early Childhood Technical Assistance Center (NECTAC): Screening and Early Identification of Autism Spectrum Disorders

In response to interest from the National Professional Development Center on Autism Spectrum Disorders (NPDC-ASD), NECTAC queried state Part C and Section 619 coordinators regarding screening measures, diagnostic instruments and procedures, and trends in identifying young children with ASD under the age of five years. NECTAC collaborated with the NPDC-ASD to develop and refine a series of questions and then to conduct an on-line survey during a two week period in November 2008. The survey was opened again in August 2009 to allow responses from additional states. NECTAC is a program of the FPG Child Development Institute at The University of North Carolina at Chapel Hill.

Study location: NECTAC at Frank Porter Graham Child Development Institute
Date found: 12/4/09

Can be found at: http://www.nectac.org/~pdfs/pubs/queries/queries_asdscreening.pdf

 

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