Early Childhood Intervention (ECI) is provided to infants and toddlers with disabilities or delays by states under Part C of the Individuals with Disabilities Education Act (IDEA). IDEA requires that services be provided in natural settings such as homes, child care centers, or community places, such as grocery stores, playgrounds, and parks, to help the child participate in community activities with other children with or without disabilities or delays.
The Georgetown University Certificate in Early Intervention Program (GUCEI) is a 9-month program that trains ECI professionals to implement evidence-based ECI services as required by the IDEA. GUCEI participants complete a team based capstone project to conclude their studies. The projects evaluate policy and procedures related to ECI programs through Strong Start, the DC Infants and Toddlers with Disabilities Program or other critical aspects of evidence-based intervention.
Ten capstone posters completed between 2014 and 2016 that focused on implementation of Part C in DC were analyzed to identify themes that support evidence-based practices. Three themes emerged: Issues related to Families, the components of the Individualized Family Service Plans (IFSP), and the priorities, concerns, and knowledge of Service Providers.
Home Visiting: What does the MIECHV Program do in DC?
ECI is grounded in what is known as family-centered care. Families play a very important role in ECI since they are the child’s first teachers. IDEA requires that service providers support families, helping them to support their child’s development, understand their specific needs, and ensure that the child is “kindergarten ready.” In addition to Strong Start, the Part C program in DC, the DC Department of Health also supports at-risk families through the Maternal, Infant, Early Childhood Home Visiting (MIECHV) Program. The MIECHV program serves pregnant women and families with children between ages 0 and 5.5 The home visiting programs support women and families to raise a child that is physically, socially, and emotionally healthy. The MIECHV home visits are voluntary. DC has chosen to implement three evidence-based home visiting curriculums:
- Healthy Families America (HFA) promotes positive parenting to enhance child health and development and prevent child abuse and neglect for socially at-risk families with children from 0 to 5.
- Parents as Teachers (PAT) provides education and support for parents and families from pregnancy through kindergarten entry.
- Home Instruction for Parents of Preschool Youngsters (HIPPY) helps parents become their child’s first teacher by providing instructions in the home to prepare their preschool aged (3-5) child for school.10
Home visitors and the MIECHV program collaborate with Strong Start regularly. As part of DC’s Early Success Framework all home visitors receive specific training on referring children to Strong Start if suspected of having a developmental delay or disability. Home visitors are often the first support families receive regarding their children thus they often need to communicate and collaborate with community-based programs to make sure intervention goals, strategies, and messages are consistent among all service providers.10
Home visitors are also trained in a variety of screening tools, like the Ages & Stages Questionnaires (ASQ), which is used to screen infants and young children for developmental delays. Based on the age of the child and the results on the ASQ, home visitors will either refer the family to Strong Start (birth to three) or Early Stages (3 to 5).1 Strong Start or Early Stages will determine if the child is delayed and meets eligibility criteria for services and supports. Once the child is referred, the home visitor needs to follow up with family to support them in creating unique service plan based on the needs of the child. 5
Family Satisfaction with Strong Start Services
Based on the information gathered from GUCEI participants, families are generally happy with the services their child and family received through the Strong Start program. After exiting the program, almost all families who responded to an on-line survey indicated that their child and family benefitted from Strong Start services. Almost all families:
- received support when their child transitioned out of Strong Start at age 3,
- were given information about their child’s strengths and needs, and
- were involved in creating an individualized family service plan (IFSP) for their child.
However, families would like to receive more information on community activities so that the children can be better integrated into the community and socialize with children with and without delays and disabilities.6
The Individualized Family Service Plan
An IFSP is a legal document that describes the resources, priorities, and concerns of the family to identify the family’s desired outcomes, which is then used to guide service delivery. It also outlines the services the team has decided will support the family in reaching the outcomes and provides information to enhance the child’s caregivers’ ability to promote the child’s growth. The IFSP also documents which environments the child will receive services in to meet the individual outcomes. Developing an appropriate strength-based IFSP is critical as the IFSP directs service provision.
GUCEI participants analyzed the quality of IFSPs, assessing the quality of the outcomes written as well as the extent to which requirements of the IFSP were met. Findings indicate that all legal requirements are met, services are provided in the natural environment, and there is an emphasis on the child’s strengths rather than weaknesses. However, IFSPs need to:
- become more family-centered
- use less legal and medical terminology
- prioritize the family’s main concerns
- reflect the functional skills in the desired outcomes.2
When the outcomes were explored more in depth, the GUCEI participants found that they may be written in a way that it is difficult to interpret them across providers. This miscommunication affects consistency and supports need for clearly established guidelines on writing outcomes.7
Service Provider Perceptions on the Strong Start Process
Service providers play an integral role in coordinating services for children with delays or disabilities. From the first referral to transition into the Strong Start program, over 40 articles of documentation are required from multiple providers at various times. Keeping track of the timeline facilitates the delivery of effective services for children and families while following state and federal regulations. Additionally, tracking progress and effectiveness of interventions will improve efficiency and transparency.3
Strong Start has adopted coaching as an interaction style. Strong Start service providers are required to coach family members, child care workers, teachers, and other caregivers supporting them to help the child meet the IFSP outcomes.4 It is suggested that service providers receive mentoring on how best to integrate services into the classroom and daily routines. This will provide opportunities for service providers to enable the child to participate most fully in activities with other children. It builds upon the caregiver’s existing skills and knowledge to promote the growth and development of children with disabilities.4
GUCEI Graduates Perception on the Training
The GUCEI program has three clear expectations of their graduates. Each graduate is expected to:
- Assess infants, toddlers and young children in partnership with their families in the context of their communities
- Collaborate to develop a comprehensive Individual Family Service Plan (IFSP)
- Use of evidence-based practices to support participation in activities.8
To meet these goals, the participants learn 16 evidence-based practices. Alumni of the program report utilizing certain skills relating to the development of a comprehensive IFSP. For example, 53% of the respondents identified family concerns, priorities, and resources, 59% communicated with families to discuss routines and provide strategies, 59% built relationships with and involved caregivers and team members, and 53% participated in a team to write functional strengths-based outcomes. Alumni also reported on their use of skills relating to evidence-based strategies to promote participation. 53% of the respondents indicated documenting services provided, 42% consulted with caregivers for reflection and joint planning, and 42% monitored and collected information to determine change over time. However, alumni report that they still struggle implementing skills such as supporting families to participate in the decision-making processes and using the coaching approach with caregivers.8
Since the GUCEI program is designed for professionals with early intervention or early childhood service responsibilities, practitioners and policy makers alike, it seeks to empower students to be competent and confident in their knowledge and abilities. Proposed improvement to the program included more face-to-face on-campus interaction and decreased classroom size for the online sessions.8
Based on the information collected for the GUCEI capstone projects, the ECI program by Strong Start in D.C. would benefit from standardizing documentation so that services are consistent, effective, and adhere to the timeline. Using language that is family-centered and reflect family priorities. A special focus on home visiting and coaching are necessary so that caregiver’s and services providers can give children the opportunity to learn in natural environments with other children.
- Anderson, J., Daugherty, M., & Hagley, D. (2014). Transitioning from Early Intervention: An On-line Learning Module.
- Chimka, J., Curry, C., & Johnson, M. (2014). Quality of Individualized Family Service Plans Created by the District of Columbia, Strong Start Program using the IFSP Rating Scale.
- Coates, A. & Agricola, J. (2014). Documentation: Strong Start, Start to Finish.
- Cobosco, J. (2016). Collaborative Care: Coaching and Early Intervention in Group Settings.
- Davis, E.V. (2016). Ages and Stages: Documented Referrals for DC Maternal, Infant, and Early Childhood Home Visiting Program.
- Jackson, J. & Nealy-Shane, D. (2016). DC Strong Start Participant Perceptions of Child & Family Outcomes.
- Martinez, E., Rogers, K., & Staton, C. (2015). Reliability of the Goal Functionality Scale III.
- Nti-Ampela, A., Brocks, N., & Wise T. (2016). GUCEI Alumni Survey.
- Porter, A., Strickland, J., Rogers S., & Behnke, S. (2016). Early Intervention and Center-Based Services Needs.
- Young, C. & Hougen, S. (2014). Linking Families to Community Resources: A Home Visitor’s Approach.
Kathleen Ryan (SNHS ’18)
Meeting the Needs of Families with Young Children Experiencing and At Risk of Homelessness provides key guidelines regarding the need for comprehensive cooperation among service providers, educators, and community resources to reduce the vulnerabilities experienced by children growing up in and around homelessness. While the policy statement more broadly targets early childhood and housing providers, the recommendations set forth throughout the document carry paramount implications for childcare and primary school teachers. Some major applications of this policy statement include but are not limited to the identification and contextualization of a child’s disability with regards to his/her particular environment, as well as implementing individualized education strategies both inside and outside of the classroom.
The Homes through Community Partnership program indicates that 84% of families experiencing homelessness are female-headed. This is due to a number of factors, including the propensity for family shelters to turn away fathers from entering with their families, both out of precaution and due to histories of domestic violence. In addition, the birth of a new child can greatly affect a parent’s ability to work and provide adequate home care, especially if the child is born to a single low-income mother. The Partnership also indicates that children growing up in poverty without stable housing are at greater risk for experiencing problems related to inadequate prenatal and postnatal care and exposure to dangerous conditions such as inclement weather or violence. In addition, children experiencing or at risk of homelessness are four times more likely to show delayed development, and twice as likely as non-homeless children to have a learning disability.
Children who are born into poverty or homelessness are often born prematurely. Babies born prematurely are at higher risk for physiological, psychological, or neurodevelopmental disabilities. Babies born at full-term are given the advantage of more mature internal systems, but when infants are born prematurely they are at an increased risk of complications such as atypical muscle tone, delayed motor development, feeding problems due to a weaker suck, and breathing issues related to underdeveloped lungs. These complications can lead to developmental delays and disabilities which last throughout childhood and can impact school performance. Children born prematurely often have decreased attention, poorer visual and motor skills, and delayed language acquisition. Early childhood educational providers and elementary school teachers must be aware of the behaviors and skill sets that are typically found in premature children in an effort to mitigate the negative impacts on the child, and to mediate the academic, social, and emotional difficulties that arise. The development and school performance of children born prematurely should be closely monitored to ensure that early intervention and early intervening services and supports are provided.
Meeting the Needs of Families with Young Children Experiencing and At Risk of Homelessness, indicates that supporting families who are homeless must be an integrated, comprehensive system as no single system is sufficient to meet all the needs of all family members and children. Every child’s living situation is different in some respect, whether socio-economic, cultural, or generally environmental. As a result, educators should be aware of the complementary programs and resources they may need to consult or work in conjunction with if a child is showing areas in one or more developmental areas and requires further accommodations or assistance.
One broad recommendation that is particularly applicable to school and childcare teachers is the importance of “aligning and coordinating the design and delivery of services for the whole family.” This is particularly important for educating children with disabilities, in order to identify the child’s specific developmental strengths and weaknesses and discern what extent external risk factors or stressors are having on the child. Additionally it is critical that classroom teachers and childcare providers maintain an open, respectful and on-going relationship with the family.
Moreover, the successful integration of child-centered and family-specific needs in children with disabilities or developmental delays rests heavily on the ability of educators and early childcare providers to communicate and cooperate in providing a comprehensive support network. Services such as Continuums of Care (CoCs) are increasingly crucial. These services work to monitor the health of at-risk mothers and newborns during and after pregnancy, educate young mothers about the programs and resources available to families who are in transitional homes or of low SES, and assist families in accessing he services and supports. In conjunction with a non-restrictive learning environment where teachers can individualize the child’s learning objectives and re-define educational success by how fairly and equally he or she benefits from participating in a classroom environment.
The Policy Statement on Meeting the Needs of Families with Young Children Experiencing and at Risk of Homelessness outlines ways in which various programs, particularly, early childhood providers and CoCs can address a variety of issues. A major issue that families who are homeless confront is the lack of coordinated support systems. In a population with decreased rates of literacy and lower levels of personal advocacy, it is critical that the U.S. puts coordinated systems of care in place. This Policy recommends that early childcare providers conduct more thorough intake procedures, where housing status is taken into account.
Furthermore, the Departments of Health and Human Services (HHS), Housing and Urban Development (HUD), and Education (DOE) suggest referring and connecting families with different program providers rather than simply giving the family the contact information for the supports. It is suggested that perhaps assigning one single family coordinator or programmer who is in charge of integrating program services and support and insuring that services and support reinforce the goals of all. This family coordinator or programmer could then help to establish academic, social, and developmental supports for each child in the family, along with educational, social, and job assistance supports for each adult in the family. One of the main takeaways from the given Policy Statement is that departments, programs, and coordinators must take a holistic approach when it comes to handling and supporting families with young children who are homeless or at risk of becoming homeless. Because each child and parent has different needs individualizing services and supports to the needs of each family member is critical.
Young children, particularly infants and children under the age of five, are at the highest risk of experiencing homelessness. Further, nearly 50 percent of children in shelters “in a given year” are under the age of six (p. 3). Because of this, it is imperative that the United States implements programs that both reduce these statistics and increase support for those facing this reality. Early childhood has proven to be the most critical and sensitive period for developing children, thus, a potential recommendation must address the educational and developmental needs of children under the age of five as well as those entering elementary school. Homeless children are at greater risk of falling behind their peers academically; therefore, the U.S. educational system must take care to provide protections and specific educational programs for young homeless children. One possible avenue that the system could take would be to implement after-school academic programs at shelters for young children to attend after their regular school day. Educational personnel, such as teachers and professional academic tutors, would teach these programs which would help to bolster the children’s academic abilities and maintain a continuity between school and home. The policy statement set forth by the U.S. Department of Health and Human Services (HHS), the U.S. Department of Housing and Urban Development (HUD), and the U.S. Department of Education (ED) recommends two-generational programs that target both the child and their parent(s). Therefore, in the possible after-school program discussed above, there could be a separate educational program for the children’s parents in order to help supports their academic needs and to increase their rates of literacy. Furthermore, the recommendations in this Policy underscore the importance of looking after individuals with disabilities. Without a proper and inclusive education, children with disabilities are at risk of becoming more isolated and falling further behind academically and socially. It is imperative that school systems set programs that enhance the learning environments of all children with disabilities who face homelessness, as education creates a platform to break the cycle of poverty and homelessness.
Alejandra Ruttimann (C’18)
Amanda Webb (C’18)
Sydney is a toddler who lives at home with her parents. She receives daily care from her immediate and extended family members (i.e., grandparents, aunts, and cousins). Sydney has a diagnosis of cerebral palsy and attends her local Early Intervention program. She receives physical and occupational therapy. As she aged, her service providers became concerned with her motor skill development, especially her difficulty in learning to stand and walk. At the age of 18 months, the Individual Family Service Plan (IFSP) team agreed to include assistive technology to promote standing and walking in her home and childcare center. Although Sydney’s family agreed to the use of assistive technology (AT), for some families, AT is a novel concept that takes time to learn, use, and advocate its functional importance across routine based activities.
Family and caregivers of children with disabilities may see multiple barriers that effect the child’s development, compared to typically developing children. Kang et al (2017) discuss the environmental, social, and attitudinal barriers many families and caregivers of children with disabilities report face compared to families and caregivers of children without disabilities. Families identify lack of resources, equipment, training, and inclusivity that hinder their child’s development compared to children without disabilities. Environmental knowledge (i.e., resources, coaching/training, family support, etc.) can help families of children with disabilities to feel included in their community and promote the overall well-being of their child’s development (Kang et al, 2017). AT devices and strategies are crucial components that help caregivers include children in routine-based activities across a variety of environments. Sydney and her family were more easily included in community based activities by using AT.
Many young children and their families depend upon AT resources and services to promote function across routine activities and environments. Children with disabilities or delays use AT to access their environment so they can move, play, and communicate safely and effectively. The Individuals with Disabilities Act (IDEA) defines AT “as any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of a children with a disability (§602(1), 2004).” IDEA (§602(2), 2004) specifically distinguishes AT services from AT devices and defines AT services as “any service that directly assists a child with a disability in the selection; acquisition, or use of an assistive technology device. This definition highlights that for children and families similar to Sydney’s, AT can be a specific device or a service that is provided to train families to use and maintain the device in order to use it across activities and ensuring that the families have many opportunities to implement learned strategies.
The IFSP team meets to discuss the need for including AT devices and services in the plan to accomplish family-centered outcomes. The team, which always includes the family, considers the implications for AT use to facilitate effective child involvement in routine-based activities. Sydney’s family and the rest of the IFSP team discuss multiple factors that can affect the success of using the device. Factors such as the persons who Sydney will be interact with, the activities she will be involved in, the environments in which she will use the device, and what types of technology are available all contribute to the decision making process.
Also, to assist with decision-making there are four questions that the IFSP team should answer: (https://www.teachingei.org/technology/11-consider.php):
1. Have previous interventions, modifications, and strategies not led to the functional results desired by the team;
2. Has there been a change in environment or circumstance;
3. Has the child’s skills or behavior changed;
4. Is there a change in technology (e.g., compatibility issues)?
The Student, Environments, Tasks, and Tools (SETT) framework (Zabala, 2010), is used by the IFSP team to consider all aspects of AT decision-making, helping the team make the most efficient, effective and functional recommendations for the device and services ensuring that the child and family will use the device across environments and by many caregivers. This eight-step decision-making process accounts for the interconnections among the: 1) child, 2) environments, 3) tasks, 4) tools, and the need for 5) ongoing evaluation and modification. Dunst, et al (2013) concluded in his meta-analysis that AT devices “promoted child engagement” in routines (e.g., playing with toys, self-feeding, moving around the home) that may otherwise be very difficult or impossible to achieve. AT devices were shown to positively impact the attainment of outcomes regardless of age, disability, or severity of child’s intellectual delay (Dunst, et. al, 2013). AT devices and strategies that are designed in light of family-centered outcomes promote multiple opportunities for the child to achieve success.
- Collect Child and Family Information
- Examine Natural Environments
- Identify Elements of Key Activities
- Brainstorm AT Solutions
- Create an Implementation Plan
- Modifications + Recommendations
Sydney’s family and service providers collaborate with each other to ensure ease of device use and activity implementation. Unfortunately, studies indicate many families and service providers “abandon” AT devices and strategies after initial implementation.
Common pitfalls an IFSP team must consider to mitigate abandonment of the device include:
1. Limited access to Early Intervention specific AT implementation strategies (i.e., routine-based intervention, least intrusive device/strategy across environments, etc.)
2. Lack of evidence-based practices implemented by service providers and family members when using IFSP defined AT devices and/or services;
3. Limited consideration of ongoing AT device maintenance or strategy modification as the child ages or family circumstances change.
Recent studies have demonstrated the necessary attitudinal shifts of parents and caregivers occur when provided sufficient and effective coaching to implement AT devices and strategies across environments and daily activities. Tamakloe and Agbenyega (2017) concluded that outcomes were achieved when childcare center teachers and staff used AT devices and strategies. Based on a survey that questioned the staff’s interactions with AT, the authors concluded that ‘maintaining positive attitudes’ were paramount for learning, maintaining, and modifying AT device usage of children with disabilities in the classroom. Service providers must provide optimal training and coaching in how to incorporate AT devices in routine based activities. Nelson, et al (2013) reported, based on interviews with teachers about their perceptions of AT use in the classroom, that teachers must know when technology will be beneficial in the classroom, as well as counterproductive to a child’s learning. Both low and high tech devices are appropriate for use by young children in the classroom, home, and community. Children use low-tech device to participate successfully in routine-based activities in the classroom and community.
Sydney’s family and service providers collaborated, coordinated, and executed an IFSP to include AT device(s) and strategies to address the family-centered outcomes. The family received coaching and training on how best to incorporate these devices in their daily activities to support Sydney’s motor skill development. The family and service providers coached and trained Sydney’s childcare center staff to ensure the AT devices and strategies were frequently and effectively included in the classroom’s daily routine. Providing the equipment, resources, and skills can help resolve environmental, social, and attitudinal barriers that would impede Sydney’s overall development.
1. Dunst, C.J., Trivette, C.M., Hamby, D.W. (2013). Systematic review of studies promoting the use of assistive technology devices by young children with disabilities. Research Brief Volume 2, Number 1. Tots-n-Tech Research Institute.
2. Kang, L., Ming-Chieh, H., Liao, H.F., Hwang, A.W. (2017). Environmental Barriers to Participation of Preschool Children with and without Physical Disabilities. International Journal of Environmental Research and Public Health. 14:518. Retrieved from: http://www.mdpi.com/journal.ijerph
3. Nelson, L.H., Poole, B., Munoz, K. (2013). Preschool Teachers’ Perception and Use of Hearing Assistive Technology in Educational Settings. Language, Speech, and Hearing in Schools. 44. pps. 239-251.
4. Sawyer, B., Milbourne, S., Dugan, L., Campbell, P. (2005). Report of assistive technology training for providers and families of children in Early Intervention. Research Brief Volume 2, Number 1. Tots-n-Tech Research Institute.
5. Simpson, L.A., Oh, K. (2013). Using Circle Time Books to Increase Participation in the Morning Circle Routine. Teaching Exceptional Children. 45; 6, pp. 30-36.
6. Tamakloe, D., Agbenyega, J.S. (2017). Exploring preschool teachers’ and support staff’s use an experiences of assistive technology with children with disabilities. Australasian Journal of Early Childhood. 42:2. Retrieved from: http://dx.doi.org/10.23965/AJEC.42.2.04
7. Zabala, J. (2010). The SETT Framework: Straight from the Horse’s Mouth. Retrieved on 2 January 2018 at http://www.joyzabala.com/uploads/CA_Kananaskis__SETT_Horses_Mouth.pdf
Sharice Lane, SLP, M
Early Intervention Diversity Fellow, 2017-2018
Fetal Alcohol Spectrum Disorder in Native American Communities: Inadequate Education and Inaccessible Health Services
Isn’t it unfortunate that there are preventable diseases, disorders, and conditions that still occur? As a nation that claims to value children, it is even more unfortunate that many people do not take plausible precautions when they could prevent later consequences. However, with the scientific and medical advancements that are constantly being discovered and implemented in the U.S., we have established a system that compensates for the lack of prevention with early intervention services. That is, of course, if you are aware of and have resources to access the use of preventative and intervening resources. Fetal Alcohol Syndrome Disorder (FASD) is an example of this issue. FASD is completely preventable. In some areas of the U.S., the number of children identified with FASD has decreased since1973 (Jones and Smith) when the disorder was first identified. However, the Native American community continues to experience a disproportionate number of children with FASD. It is estimated that 29.9 American Indian infants out of every 10, 000 live births have FASD.
FASD is one of the most prevalent disorders that Native Americans face. FASD is a spectrum disorder characterized by structural anomalies and behavioral and neurocognitive disabilities in children resulting from a mother’s alcohol consumption during pregnancy (Beckett, 2011). Members of the Native American community experience high rates of alcoholism, and women tend to drink during their pregnancies and during labor, women use alcohol and drugs to numb their labor pains (Beckett, 2011). This alcohol use may be due to the lack of awareness about the dangers of alcohol consumption during pregnancy to unborn children.
Currently, there are programs specifically designed to educate the Native American community and provide resources for them. With help from the Substance Abuse and Mental Health Services Administration (SAMSHA) and the National Organization on Fetal Alcohol Syndrome (NOFAS), the Navajo Nation FASD Prevention Program, developed a creative and culturally sensitive program that has aided over 40,000 members of their tribe (Beckett, 2011). Unfortunately, because this program is only open to members of Navajo Nation, other Native Americans tribes cannot access it. However, SAMSHA and NOFAS attempt to provide resources throughout the entire Native American population. One innovative program was established by Morgan Fawcett, who is affected by FASD. He travels throughout the U.S. explaining FASD, discussing prevention strategies, and providing services needed for those affected by FASD (Ulen, 2011). Although the efforts taken by these organizations and people yield positive effects, they have not caused long-term change in the communities.
Members of Native American communities are almost two times as likely to have FASD than white Americans not only due to the lack of education, but also because of the lack of appropriate medicine and access to clinics. The inability to seek assistance may play a part in the higher alcohol consumption by the Native American population. The Indian Health Service (IHS) is supposed to provide “federal health services to American Indians and Alaska Natives” (Indian Health Service). However, with their limited number of hospitals, health centers, and health stations, members of the communities cannot access the appropriate treatment or therapy they may need to moderate their alcohol consumption. The hospitals and health stations that members can use to obtain intervention are limited, and they may be located very far from the community. Although the primary goal of the IHS is to provide health care for American Indians, only 20% of community members use the services due to lack of accessibility. For example, a woman from the Assiniboine Tribe on the Fort Belknap Reservation drove over 35 miles to reach the health station, and waited for hours to receive her prescription, only to realize upon her arrival back home that she had been given the wrong medication (King, 2016).
In order to decrease the rate of FASD in Native American communities, the IHS, in addition to the Substance Abuse and Mental Health Services and the National Organization on Fetal Alcohol Syndrome, need to create culturally sensitive programs that can adequately educate people about FASD and provide resources for the Native American communities. To address intervention, the IHS should develop more services and supports closer to reservations or provide free transportation. A key factor in addressing FASD is educating leaders from the communities so they can disseminate the importance of sobriety before and during pregnancy while also explaining what resources are available to families if a child is affected by FASD. These improvements could help to significantly decrease the high rates of FASD in the Native American population in the U.S.
Indian Health Service. (n.d.). Retrieved from https://www.ihs.gov
Jones, K. L. and Smith, D. W. (1973) Recognition of the fetal alcohol syndrome in early infancy. Lancet, 999–1001.
King, J. (2016). Indian Health Service Problems Under Scrutiny by Senate Panel. News Talk KGVO. Retrieved from http://newstalkkgvo.com/indian-health-service-problems-under-scrutiny-by-senate-panel/
Mental Health: Culture, Race, and Ethnicity: A Supplement to Mental Health: A Report of the Surgeon General. (2001). Substance Abuse and Mental Health Services Administration, Ch. 4. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK44242/.
Ulen, E. N. (2011). Fetal Alcohol Syndrome Rate Higher Among American Indians. Indian Country Today
Media Network. Retrieved from http://indiancountrytodaymedianetwork.com/2011/09/05/fetal-alcohol-syndrome-rate-higher-among-american-indians-48085
Bria Marley (C’17)
The 1960s was a remarkable decade for the US as the outcomes of the Supreme Court’s 1954 Brown vs. Board of Education of Topeka decision affected social policy, politics, and education greatly. During this period the federal government was involved in the protection of civil rights for all it citizens and ensuring that the laws were enforced. The educational system was closely examined and new initiatives were implemented leading to significant reforms. Through these reforms, it was discovered that special education was a string attached to the system and could not be left behind. Since then the federal government has promoted initiatives to benefit and support children with disabilities.
Recently the Departments of Education and Health and Human Services jointly released a policy statement, Inclusion of Children with Disabilities in Early Childhood Programs (ED &HHS, 2015). The statement highlights the:
- Challenges encountered by families to access inclusive programs for their children with disabilities
- Research –based benefits that children gain when participating in high-quality inclusion programs, and
- National and state resources available to early childhood professionals, and families to support high-quality individualized programming and inclusion of children with disabilities in early childhood programs
The most significant strength of the policy is its recommendations for action. The recommendations are well written using sound and clear language and divided into two main groups: recommendations for States and local jurisdictions and agencies that provide services to young children and are stated as follow:
Recommendations for State Action
Recommendations for Local Action
|1. Create a State-Level Interagency Taskforce and Plan for Inclusion||1. Partner with Families|
|2. Ensure State Policies Support High-Quality Inclusion||2. Adhere to Legal Provision of Supports and Services in Inclusive Settings with IFSPs/IEPs|
|3. Set Goals and Track Data||3. Assess and Improve the Quality of Inclusion in Early Childhood Programs|
|4. Review and Modify Resource Allocations||4. Review and Modify Resource Allocation|
|5. Ensure Quality Rating Frameworks are Inclusive||5. Enhance Professional Development|
|6. Strengthen Accountability and Build Incentive Structures||6. Establish an Appropriate Staffing Structure and Strengthen Staff Collaboration|
|7. Build a Coordinated Early Childhood Professional Development (PD) System||7. Ensure Access to Specialized Supports|
|8. Implement Statewide Supports for Children’s Social-Emotional and Behavioral Health||8. Develop Formal Collaborations with Community Partners|
|9. Raise Public Awareness|
While the recommendations present a good level of feasibility, the local recommendation that calls to “Enhance Professional Development” for the teachers could present challenges. This recommendation places high expectations on staff for continuing education. Unfortunately, many early childhood providers have only basic education in child development and limited time and finances for professional development.
The recommendation indicates that, “High-quality staff should have knowledge, strong competencies, which include competencies in culturally and linguistically responsive practice, and positive attitudes and beliefs about inclusion and disability in order to foster the development of all children. In addition, they should have a strong understanding of universal design and universal design for learning.” (ED &HHS, 2015, p. 16). When taking a close look at the early childhood workforce it is well known that is fragmented and in crisis. Beside the reasons mentioned above, there is a high turnover, instability, and a few workers with appropriate credentials, and these could eventually hurt the consistency of care. Attainment of quality workers for any center is hard as well, especially when a miserable pay scale is not attractive to highly qualified professionals.
To expect that early childhood providers obtain those skills and competencies states and jurisdictions should provide resources to build a strong, knowledgeable workforce and infrastructure. How can we expect early childhood providers to possess the knowledge, the skills, and attitudes to ensure high quality teaching? How can we attain and retain teachers with a sustainable capacity to provide optimal services to children with special needs within their classrooms? How can we expect the early childhood teachers to work collaboratively with a variety of specialist who know little about early childhood curricula, standards, and expectations? Resources are needed to create innovative, accessible supports to meet these expectations.
The recommendations must be seen as an opportunity to enhance early childhood professional development rather than a barrier. While we can ask many questions and list several challenges, we need to see this recommendation as the stepping-stone for providers to undo mindsets, raise awareness about inclusion within their own centers, advocate for training, ultimately including children with special needs in their programs.
Brown v. Board of Education.(n.d) Retrieved from http://www.civilrights.org/education/brown/?referrer=https://www.google.com/
Policy statement on inclusion of children with disabilities in early childhood programs.(2015). Retrieved from http://www2.ed.gov/policy/speced/guid/earlylearning/joint-statement-full-text.pdf
Isabel Lainez, PhD
Nine percent of US children between the ages of two and three have at least one diagnosed mental, behavioral, or developmental disorder (Bitsko et al., 2016). In 2015, 350,581 children received early intervention services under Part C of the Individuals with Disabilities Education Act (IDEA). However, a recent study found that 24% of all two-year olds were deemed ineligible for early intervention services (EI) at two years of age but experience poor academic and behavioral outcomes upon entering kindergarten (Nelson et al., 2016). Social emotional and behavioral difficulties seen at early ages often predict social challenges later in life (Briggs-Gowan, 2008). However, EI rarely addresses the needs of the children who display social, emotional and/or behavioral challenges and their families unless the child demonstrates a significant developmental delay.
This is concerning considering the vast body of research (Mistry et al, 2010; Sektnan, 2010; Shonkoff, 2012) indicating “long-term developmental-behavioral and educational outcomes are strongly associated with socioeconomic factors” (Nelson et al., 2016). Children who are exposed to multiple social risk factors, such as poverty, domestic or community violence, substance abuse, etc., have a higher risk of experiencing mental health issues (Bjorkenstam, 2017). Unfortunately, the current EI system doesn’t seem to have the capacity to adequately address the social emotional needs of these children. This blog will explore opportunities for the current EI system to improve its services related to social emotional development.
Early intervention, as described by Part C of the Individuals with Disabilities Education Act (IDEA), is a comprehensive, multidisciplinary system of services intended to enhance the development of infants and toddlers; maximize the capacity of families to meet their child’s needs; and encourage independent living (ECTA, n.d.). In 1986, Congress established Part C to assist states in supporting the developmental needs of children birth to age three in five developmental categories: physical, cognitive, communication, social emotional, and adaptive. Although the federal government requires each state to have an EI program to address these 5 developmental domains, the eligibility requirements and implementation guidelines vary from state to state.
Due to a variety of factors, (administrative, professional licensure, payment, etc.), the implementation of early intervention is more in line with a predominantly medical model of service provision despite research supporting family-centered models as the preferred practice (Bruder, 2010; Hoffman et al., 2016). Over the past 30 years, the idea of addressing an underlying medical concern or impairment has become central to early intervention service systems (NCCP, 2009). This traditional model is based on a direct service delivery system, in which one provider delivers specific therapeutic intervention to an individual child.
The narrow, developmental delay-based eligibility criteria in use by many states may also prevent children with social-emotional considerations from being found eligible for services (Ringwalt, 2015). Unless a child has delays in other areas of development, children with social emotional concerns are considered at-risk. As of 2015, only seven states offered services to at-risk children (Ringwalt, 2015). This statistic is especially troubling when considering the growing body of knowledge on children with social-emotional difficulties, as well as behavioral concerns, contributing to preschool and child care expulsions (Gillman, 2005; Perry et al., 2008; US Department of Education, 2014).
As concerns about social emotional development in young children increase, it may prove worthwhile to explore how EI programs can collaborate with early childhood mental health professionals. In contrast to a variety of direct therapeutic services offered by EI, Early Childhood Mental Health Consultation (ECMHC) indirectly supports children who are experiencing social-emotional or behavioral difficulties, their families, and their teachers. It seems reasonable that the EI and the ECMH fields would be natural collaborators but there exists little evidence to support this. How then, can these two support systems collaborate to build a truly comprehensive, well-coordinated system of care that effectively promotes positive development in all domains?
Early Childhood Mental Health Consultation
ECMHC is a “problem-solving and capacity-building intervention” intended to improve the ability of caregivers to “prevent, identify, treat, and reduce the impact of mental health problems among children from birth to age six and their families” (Duran et al., 2009). Multiple states across the nation have begun implementing their own ECMHC programs, as ECMHC has been shown to be an effective strategy for improving challenging behaviors and “supporting young children’s social/emotional development in early childhood education settings” (Duran et al., 2009). Maryland’s ECMHC Evaluation, a three-year study designed to evaluate ECMHC’s impact on early childhood education (ECE) environments, found that ECMHC intervention in childcare settings decreased problem behaviors in the classroom, improved social and emotional functioning of the child, and decreased parental stress (Stephan et al., 2011). Despite the research supporting ECMHC as an effective intervention strategy, many children and families do not have access to this service.
Unlike EI, ECMHC programs are not available in every state. According to Duran, et al (2009), 29 states have formalized ECMHC services. The implementation of these programs varies from state to state, as there is no standardized set of core competencies outlining effective ECMHC (Duran et al, 2009). Based on an analysis of the 29 states with ECMHC, Duran, et al proposed a framework for effective, high-quality ECMHC (Figure 1).
Figure 1: Framework For Effective Early Childhood Mental Health Consultation Programs
This framework outlines the three core components of an effective ECMHC program: 1) solid program infrastructure, 2) highly qualified mental health consultants, and 3) high-quality services. Additionally, the Duran et al study (2009) identified two key elements as the “catalysts for success”: 1) positive relationships between the consultant and consultees and 2) readiness of families and ECE providers/programs for ECMHC.
ECMHC and EI: Similarities and Differences?
Figure 2: The Intersection of Early Intervention and Early Childhood Mental Health Consultation
Despite having a number of similarities, EI and ECMHC remain largely unaware of each other. What obstacles may be preventing communication between these two service systems?
While EI and ECMHC both focus on caregiver capacity-building, the providers’ approach differs. EI providers work with the child and caregiver directly to meet a list of child-specific, family-centered outcomes. Mental health consultants, however, work almost exclusively with caregivers, as their purpose is to address the caregiver’s concerns within an early care and education setting (Duran et al, 2009). Consultants respond to the caregiver’s concerns by recommending strategies and interventions that promote the successful participation and regulation of the child. As their focus is on the caregiver, the ECMHC may not recognize the need to refer the child to EI. Evidence supporting this argument can be found within Maryland’s ECMHC Evaluation’s Final Report (Stephan et al, 2011).
Maryland’s ECMHC Evaluation provided a commentary on the mental health consultants’ knowledge and skills (Stephan et al, 2011). Consultants reported feeling confident about their knowledge of social emotional development. However, consultants felt “least confident about their grasp of early intervention service systems, treatments and family support services” (Stephan et al., 2011). Additionally, the consultants reported having the least amount of experience in providing direct therapy. This feedback indicates that mental health consultants may not be considering delay and/or disability as a contributing factor to the child’s behavior and/or and social-emotional health. However, the argument could also be made that EI providers may not consider the impact poor social emotional health may have on the function of a child with a delay and/or disability.
Intersection of EI and I/ECMHC: Opportunity for the Collaboration
Under Part C of IDEA, EI providers support developmental in all 5 areas (communication, physical, cognitive, social emotional, and adaptive). However, most children receive EI support because of identified delays in motor and/or language development (Bruder, 2010; NCCP, 2009). Even though Part C providers aim to promote positive social-emotional skills, this is often overlooked when determining IFSP outcomes. As a result, EI services are often based on an identified developmental delay and most children receive therapeutic services (occupational therapy, physical therapy, or speech therapy) to remediate a delay (NCCP, 2009). If EI programs focus too narrowly on development delay, children experiencing social emotional and behavioral difficulties may not be receiving the support they need. Collaborating with ECMHC may help raise awareness around the importance of social emotional development at an early age within the EI network as well as support caregivers in promoting this development.
Pairing ECMHC’s effective connections with caregivers with EI’s extensive evaluation and service delivery model provides an opportunity to build resilience among the most vulnerable children.
Bitsko, R. H., Holbrook, J. R., Robinson, L. R., et al. (2016). Health care, family, and community factors associated with mental, behavioral, and developmental disorders in early childhood — United States, 2011–2012. Morbidity and Mortality Weekly Report. 65(9), 221–226. http://dx.doi.org/10.15585/mmwr.mm6509a1
Björkenstam, E., Pebley, A. R., Burström, B., & Kosidou, K. (2017). Childhood social adversity and risk of depressive symptoms in adolescence in a US national sample. Journal of Affective Disorders, 212, 56-63. doi:http://dx.doi.org/10.1016/j.jad.2017.01.035
Briggs-Gowan, M. J. & Carter, A. (2008). Social-emotional outcomes screening status in early childhood predicts elementary school outcomes. American Academy of Pediatrics. 121(5), 957-962. http://doi:10.1542/peds.2007-1948
Bruder, M. B. (2010). Early childhood intervention: a promise to children and families for their future. Council for Exceptional Children, 76 (3), 339-355.
Cooper, J. L. & Vick, J. (2009). Promoting social emotional wellbeing in early intervention services. New York, NY: National Center for Children in Poverty.
Duran, F. et al. (2009). What works? A study of effective early childhood mental health consultation programs. Washington, DC: Georgetown University Center for Child and Human Development.
The Early Childhood Technical Assistance Center (ECTA). (n.d.). Early intervention program for infants and toddlers with disabilities (Part C of IDEA). Retrieved from http://ectacenter.org/partc/partc.asp
Gilliam, W. S. (2005). Prekindergarteners left behind: explusion rates in state prekindergarten systems. New Haven, CT: Yale University Child Study Center.
Hoffman, T. K. (2016) An exploration of service delivery in early intervention over the last two decades. International Journal of Early Childhood Special Education (INT-JECSE), 8(2), 107-112. DOI:10.20489/intjecse.284568
Mistry, R. S., Benner, A. D., Biesanz, J. C., Clark, S. L., & Howes, C. (2010). Family and social risk, and parental investments during the early childhood years as predictors of low-income children’s school readiness outcomes. Early Childhood Research Quarterly, 25(4), 432-449. doi:http://dx.doi.org/10.1016/j.ecresq.2010.01.002
Nelson, B. B., Dudovitz, R. N., Coker, T. R., et al. (2016). Predictors of poor school readiness in children without developmental delay at age 2. American Academy of Pediatrics, 138(2), 2-12. doi: e20154477
Perry, D.F., Dunne, M.C., McFadden, L. & Campbell, D. (2008). Reducing the risk for preschool expulsion: mental health consultation for young children with challenging behaviors [Abstract]. Journal of Child and Family Studies. 17(1), 44-54.
Ringwalt, S. (2015). States’ and territories’ definition of/criteria for IDEA part C eligibility. Retrieved from http://ectacenter.org/~pdfs/topics/earlyid/partc_elig_table.pdf
Sektnan, M., McClelland, M. M., Acock, A., & Morrison, F. J. (2010). Relations between early family risk, children’s behavioral regulation, and academic achievement. Early Childhood Research Quarterly, 25(4), 464-479. doi:http://dx.doi.org/10.1016/j.ecresq.2010.02.005
Shonkoff, P. J. & Garner S. A. (2012). The lifelong effects of early childhood adversity and toxic stress. American Academy of Pediatrics, 129(1), 232-246.
Stephan, S. et al. (2011). Maryland’s early childhood mental health consultation evaluation. University of Maryland, MD.
U.S Department of Education Office for Civil Rights. (2014). Data snapshot: early childhood education. Retrieved from https://www2.ed.gov/about/offices/list/ocr/docs/crdc-early-learning-snapshot.pdf
Ehvyn McDaniels (Diversity Fellow, 2017)
Children who are prenatally exposed to drugs are at risk for developing a series of health conditions, or physical or intellectual disabilities. Although the use of drugs by women who are pregnant is decreasing, the amount of use is still shocking and unacceptable. Research indicates that more than 5 percent of women use illicit drugs while pregnant; 15 percent of pregnant women ages 15 to 17 use or abuse illicit drugs. (Levine, Liu, Das, Lester, Lagasse, Shankaran, et al., 2008) Women of color and women from low income families are disproportionately more likely to use drugs than their white, upper class counterparts. Prevention outreach and awareness campaigns can help inform mothers that using substances during pregnancy can lead to a variety of issues, including maternal anxiety and depression, child development delays or disabilities, domestic violence, and suboptimal support for the children in a family. (Marques, Pokorni, Long, & Teti 2007). The developmental delays experienced by the children can include problems with motor skills, learning disabilities, and behavior problems.
Though drugs have clear negative effects on children and families, there is little research being done to identify promising practices implemented to prevent the use of drugs like cocaine, heroin, or prescription pills (http://www.drugabuse.gov/sites/default/files/prenatal.pdf).
during pregnancy. Researchers have focused more on alcohol use and tobacco as causes of Fetal Alcohol Spectrum Disorder (FASD), low birthweight, and other developmental issues. Slowly, researchers and policy-makers are prioritizing early intervention programs that support and empower women, especially young, low-income, women of color, to not use drugs, preventing their deleterious effects on the children. Recent studies have indicated that certain programs decrease the rate of substance abuse and strengthen indicators of academic success in children.
Several intervention projects are being implemented in our country’s most underserved and disadvantaged communities. These come in the form of community partnerships with private companies, medical services associated with hospitals and universities, state- and federally- funded programs through schools, and grassroots awareness campaigns from non-profit organizations. Each of these programs targets certain demographics of women and the specific issues that they face. These can greatly influence how a mother experiences her pregnancy and whether a child is exposed to drugs.
The Johns Hopkins School of Public Health
http://www.jhsph.edu/news/news-releases/2014/in-home-visits-reduce-drug-use-depression-in- pregnant-teens.html) released a report that highlighted an intervention framework that was implemented in an underserved American Indian community, and showed great promise. The Native American population is at high risk for substance abuse, especially alcohol abuse and the community has a high incidence of fetal alcohol syndrome. (http://www.drugabuse.gov/sites/default/files/prenatal.pdf) The program, “Family Spirit”, reaches out to young mothers-to-be, offering resources and services necessary to maintain a healthy pregnancy and raise healthy children. The program includes home-visiting by nurses and paraprofessionals using a curriculum designed specifically for the Native American population. Findings from a study of 322 expectant Native American teens indicated that many of the teens had experienced substance abuse, depressive symptoms, residential instability, and did not complete high school, all factors that can have a negative impact on a child. The nurses in the program worked very closely with the Family Spirit participants, sharing best practices for dieting and avoiding substances during pregnancy, as well as tips for breastfeeding, reading at night, and coping with stressful situations after the child is born. The nurses and paraprofessionals were also members of the American Indian community, making the initial trust-building a much smoother process. At the end of the three year study period, researchers concluded that the program decreased maternal depression and decreased the rate of illicit substance abuse. Based on these positive results, Family Spirit is now eligible for federal funding, and other communities are looking to replicate this program.
The Family Spirit program is just one example of what states can do to address substance abuse during pregnancy. Other institutions are coming together to brainstorm ways to sensitively confront mothers who are potentially engaging in dangerous behavior. A report presented at the National Abandoned Infants Assistance (AIA) Resource Center conference in California (2014) described how, four unique, federally-funded programs collaborated to identify common issues across states, share best strategies for policy implementation and service dissemination, and devise new ways to address issues of prenatal substance exposure in children. The conference presented approaches used to engage mothers in discussions on sensitive subjects like drug use and underlying problems. A referral flowchart was developed for primary care physicians to discuss with mothers the need for specialists or entering programs to decrease drug use and to access resources and information necessary for a healthy pregnancy and to avoid prenatal drug exposure in children.
The society, government, civil society, and communities should do more to encourage, incentivize, and reward programs that prioritize substance abuse during pregnancy. Ensuring that every mother can live in a drug-free and safe space is crucial to ensure that every child, regardless of ability or disability, can thrive.
Levine, T. P., Liu, J., Das, A., Lester, B., Lagasse, L., Shankaran, S., et al. (2008). Effects of prenatal cocaine exposure on special education in school-aged children. Pediatrics,122(1), e83-e91.
Marques, P. R., Pokorni, J. L., Long, T., & Teti, L. O. (2007). Maternal depression and cognitive features of 9-year-old children prenatally-exposed to cocaine. American Journal of Drug and Alcohol Abuse, 33(1), 45-61.
Olds, David et al. (2004). Effects of home visits by paraprofessionals and by nurses: Age 4 follow-up results of a randomized trial, Pediatrics, 114(6), 1560-1568.
Demographic and Psychosocial Characteristics of Substance-abusing Pregnant Women. National Center for Biotechnology Information. U.S. National Library of Medicine, 26
Mar. 1999. Web. 27 Jan. 2015. <http://www.ncbi.nlm.nih.gov/pubmed/10214543>.
Prenatal Exposure to Drugs of Abuse. National Institute on Drug Abuse, May 2011. Web. 27 Jan. 2015. <http://www.drugabuse.gov/sites/default/files/prenatal.pdf>.
Dan Silkman (GU ‘15)