See PDF version: EHS Disabilities Summit Full Proceedings [PDF, 2.39MB]
Evidence-based research that focused on young children formed the foundation of this meeting. An overview of the topic and recent national studies introduced participants to the idea of using evidence-based research to improve services to children. This information was followed by three panel presentations:
- Panel 1: Prevention,
- Panel 2: Screening and Early Identification, and
- Panel 3: Interventions.
Participants then considered opportunities to apply the practices presented, shared ideas and known methods of implementation, and determined supports and resources needed to implement the practices. The day offered a unique opportunity to network and learn with others having diverse perspectives, including parents, policy makers, researchers, service providers, funders, technical assistance providers, grant-makers, practitioners, and others.
An award presentation opened the meeting. The Conrad N. Hilton Foundation was recognized for its sustained commitment to improving services for infants and toddlers with disabilities and their families. Through their Hilton/Early Head Start (EHS) Training Program, the Foundation has/is contributing nearly $40 million over a ten year period to support intensive SpecialQuest training. Claude Allen, Deputy Secretary of Health and Human Services (HHS), acknowledged the Hilton Foundation's efforts as "a private organization - one of the stars about which we do not often hear - who is partnering with us to make a difference." Accepting on behalf of the Conrad N. Hilton Foundation was its president, Steven Hilton.
To set the stage for the day's information was an overview on Early Head Start and Developmental Disabilities. Craig Ramey noted the growing knowledge base that demonstrates that what happens early in a child’s life is very important. Our actions become the shapers of their development, leading to stronger growth with highly differentiated development or slower growth with less differentiated development.
This was followed by Aracelly Valverde's introduction of the Parent/Local Provider Perspective. She discussed her experience as a Head Start parent of a child with Down's syndrome as well as working with others within the Head Start system to ease their way through the complex systems available. The importance of partnering was shared. Good communication between local programs and the family is very important, but a strong network connecting the child and parents/family to the EHS program, specialists, schools, and the community in general improves services and benefits the child and family.
Two presentations on recent national studies rounded out this part of the meeting. Kathleen Hebbeler spoke of the National Early Intervention Longitudinal Study (NEILS) which follows a sample of children from the time they enter early intervention until kindergarten. Some of the study's findings show discrepancies, by family income and ethnicity, in how early intervention is delivered and experienced by families. These findings can be used to improve the delivery of early intervention services.
The second national study was presented by Helen Raikes, who spoke of the Early Head Start (EHS) Evaluation findings on disability services. This study effectively had the expertise of approximately 100 researchers involved at 17 research sites and national contractors, Mathematica Policy Research and Columbia University National Center for Children and Families. In comparing EHS to the control group, EHS had a broad pattern of outcomes that were significantly better than those seen in the control group. Though modest, the findings spread across all areas of child development and parenting and diverse population subgroups. Impacts were notably strong in several subgroups. Some findings regarding special education services were exciting; however, some gaps in identification and service provision were also noted. Recommendations were given.
At this point, three panel presentations began, the first covering Prevention. Joe Mulinare highlighted Healthier Pregnancy and Folic Acid. Research has shown that folate is a requirement for having a healthy embryo and neural tube defects (NTDs) can be reduced by the use of folic acid in a woman's diet. The medical community is actively encouraging women of reproductive age to consume folic acid through a supplement to reduce birth defects.
Also in the arena of prevention, Catherine Ayoub spoke on the Prevention of Infant Development Problems -- Addressing Maternal Mental Health. Children who have more trouble with attention and who are more distractible seem to have mothers who are more depressed, yet it is unknown which situation precedes the other. In spite of parents remaining depressed, they can still be better parents by working with professionals in their children’s program. Evidence shows that the earlier these children and families are identified the better.
The second panel looked at Screening and Early Identification. Katherine Holman spoke about the importance of Early Screening Practices for Autism Spectrum Disorders (ASD). In that there is no medical test available, diagnosis is done by behavioral observation of symptoms. This puts programs like EHS in a key position to act early for the child's benefit when symptoms are displayed. She described a potentially useful screening tool: the Modified Checklist for Autism in Toddlers (M-CHAT).
Karl White followed with information on Getting a Hearing Head Start promoting earlier detection and intervention. It is known that congenital hearing loss among children is the most frequent birth defect. If it is not detected early, children with congenital hearing loss lag significantly behind their peers in language, cognitive and social development. He outlined procedures used to train and support EHS staff to use Otoacoustic Emissions (OAE) based technology for hearing screenings.
The third panel covered Interventions. Communication Intervention was presented by Carol Trivette. She reviewed research on dialogic reading to improve language skills for children with developmental delays. If the intervention is practiced with children 3 or 4 times per day for up to 15 minutes, significant improvement occurs.
Social Behavior Interventions were discussed by Lise Fox and Mary Louise Hemmeter to round out the last panel. They discussed a framework that focuses on building relationships with children and their families as a context for supporting children's social emotional development and addressing their challenging behavior. As part of this model, they described Positive Behavior Support (PBS), a values-based, empirically validated approach for resolving problem behaviors and helping children lead enhanced lives. PBS is a highly individualized process that should be implemented in partnership with families. Programs like EHS are in a key position to be instrumental in helping families understand and implement these practices.
At specified periods throughout the day, participants were able to interact in round table discussions as well as ask questions of the presenters. In her concluding remarks, Judith Jerald, EHS Coordinator for the Head Start Bureau, summarized key elements of the meeting:
- Federal, private-public, and local community partnerships are of utmost importance in maximizing success in working with children and their families.
- When families are engaged in the process, better outcomes occur. Engaging families is a challenge because some of the families that most need to be engaged are currently outside of the process, e.g., teen parents, minorities, less educated families, and families with lower incomes.
- Materials and resources must be disseminated using a wide variety of media.
- Materials, programs, and interventions discussed at this meeting should become part of staff training. For example, when frontline staff members are aware of hearing tests and the importance of folic acid, they are then able to educate families and make a tremendous difference in the child's/family's experience.
- Earlier interventions are better than later interventions. However, interventions often do not occur as early as they should. It is important to identify problems as early as possible so as to intervene and provide services quickly.
- A combination of interventions is most often successful. Utilizing a single intervention often does not make a difference. Early Head Start is determined to be flexible in intervening and in offering a variety of services that meet the needs of children and families.
- The importance of mental health and social/emotional development to a child’s physical development needs to be emphasized. It is not well known in part because there are not enough infant/toddler mental health professionals, especially in rural areas.
- Research is important to practice and to policy. For example, many States now mandate testing the hearing of newborns as a result of knowledge gained through research. Policy can be based on research, and research-based practices can be and are being developed that will enhance the lives of children and their families.
- The medical community must be fully engaged in EHS research and practice.
Next steps for participants include following up on information learned at this meeting and increasing, developing, and celebrating programs and services offered to children and their families.