Diane D. Behl

The Medical Home for Children with Autism Spectrum Disorders: Parent and Pediatrician Perspectives.

This qualitative study examines differences between perceptions of parents and pediatricians regarding the needs of children with autism spectrum disorders (ASDs) and their families within the medical home. Two separate focus groups of parents of children with ASDs and pediatricians were conducted. Parents and pediatricians identify unmet needs within medical homes of children with ASDs. Parents perceived that physicians did not act early upon their concerns about development, and that care is less comprehensive, coordinated and family-centered than desired. Pediatricians desire to improve services but cite lack of time, training and resources as barriers. Medical homes for children with ASDs would benefit from better pediatrician ASD education and medical systems that support extended visits, care coordination and interdisciplinary collaboration.

Child characteristics, family demographics and family processes: Their effects on the stress experienced by families of children with disabilities

Abstract Parents of children with disabilities are often reported as having more stress than their counterparts. Because past investigations of parent stress have been limited by considering too few sources of stress, this study gathered a large variety of demographic, child and family process variables. Two domains of parenting stress, including those aspects related to the childs characteristics (child related) and those aspects concerned with the parents attitudes toward parenting (parent related) were analyzed separately. The results showed that the circumstances and processes of a family, as well as child characteristics, must be taken into account when clinicians attempt to mediate problems. This research has direct application for clinicians and interventionists. If intervention hopes to truly serve families, a thorough understanding of parenting stress is needed.

Overview of States' Use of Telehealth for the Delivery of Early Intervention (IDEA Part C) Services

Background: Early intervention (EI) services are designed to promote the development of skills and enhance the quality of life of infants and toddlers who have been identified as having a disability or developmental delay, enhance capacity of families to care for their child with special needs, reduce future educational costs, and promote independent living (NECTAC, 2011). EI services are regulated by Part C of the Individuals with Disabilities Education Improvement Act (IDEA); however, personnel shortages, particularly in rural areas, limit access for children who qualify. Telehealth is an emerging delivery model demonstrating potential to deliver EI services effectively and efficiently, thereby improving access and ameliorating the impact of provider shortages in underserved areas. The use of a telehealth delivery model facilitates inter-disciplinary collaboration, coordinated care, and consultation with specialists not available within a local community. Method: A survey sent by the National Early Childhood Technical Assistance Center (NECTAC) to IDEA Part C coordinators assessed their utilization of telehealth within states’ IDEA Part C programs. Reimbursement for provider type and services and barriers to implement a telehealth service delivery model were identified. Results: Representatives from 26 states and one jurisdiction responded to the NECTAC telehealth survey. Of these, 30% (n=9) indicated that they are either currently using telehealth as an adjunct service delivery model (n=6) or plan to incorporate telehealth within the next 1–2 years (n=3). Identified telehealth providers included developmental specialists, teachers of the Deaf/Hard of Hearing (DHH), speech-language pathologists, occupational therapists, physical therapists, behavior specialists, audiologists, and interpreters. Reimbursement was variable and included use of IDEA Part C funding, Medicaid, and private insurance. Expressed barriers and concerns for the implementation of telehealth as a delivery model within Part C programming included security issues (40%; n=11); privacy issues (44%; n=12); concerns about quality of services delivered via telehealth (40%; n=11); and lack of evidence to support the effectiveness of a telehealth service delivery model within IDEA Part C programming (3%; n=1). Reimbursement policy and billing processes and technology infrastructure were also identified as barriers impacting the implementation of telehealth programming. Conclusions: Provider shortages impact the quantity and quality of services available for children with disabilities and developmental delay, particularly in rural areas. While many states are incorporating telehealth within their Early Intervention (IDEA Part C) services in order to improve access and overcome personnel shortages, barriers persist. Policy development, education of stakeholders, research, utilization of secure and private delivery platforms, and advocacy may facilitate more widespread adoption of telehealth within IDEA Part C programs across the country.

Building a System of Care for Children With Special Healthcare Needs

This article describes current efforts to (a) define best practices and desired systems-level outcomes for a system of care for Children with Special Health Care Needs (CSHCN) and their families; (b) describe the interconnections between Part C early intervention programs and those for CSHCN; and (c) develop measuring and monitoring strategies for implementing a state-level system for all CSHCN. The importance of working in partnership with states and family representatives with respect to defining, measuring, and monitoring progress toward a system of care will be illustrated through a description of a federally funded Participatory Action Research project. Results of the project include the development of national indicators for the 6 performance measures to guide states in their efforts to achieve a system of care.

Measuring Costs and Outcomes of Tele-Intervention When Serving Families of Children who are Deaf/Hard-of-Hearing

Background: Optimal outcomes for children who are deaf/hard-of-hearing (DHH) depend on access to high quality, specialized early intervention services. Tele-intervention (TI), the delivery of early intervention services via telehealth technology, has the potential to meet this need in a cost-effective manner. Method: Twenty-seven families of infants and toddlers with varying degrees of hearing loss participated in a randomized study, receiving their services primarily through TI or via traditional in-person home visits. Pre- and post-test measures of child outcomes, family and provider satisfaction, and costs were collected. Results: The TI group scored statistically significantly higher on the expressive language measure than the in-person group (p =.03). A measure of home visit quality revealed that the TI group scored statistically significantly better on the Parent Engagement subscale of the Home Visit Rating Scales-Adapted & Extended (HOVRS-A+; Roggman et al., 2012). Cost savings associated with providing services via TI increased as the intensity of service delivery increased. Although most providers and families were positive about TI, there was great variability in their perceptions. Conclusions: Tele-intervention is a promising cost-effective method for delivering high quality early intervention services to families of children who are DHH.

The Use of the Battelle Developmental Inventory in the Prediction of Later Development

This study was designed to assess the ability of the Battelle Developmental Inventory (BDI) to predict later achievement involving a sample of children with or at-risk for developmental delays. The investigation utilized BDI scores administered annually for one to three years involving children who were one to four years of age. Results were compared to those obtained on the Woodcock-Johnson Test of Achievement-Revised, standard battery (WJR-ACH: Woodcock & Johnson, 1989), which was administered one, two, and three years following the last administration of the BDI. Correlations between earlier BDI and later WJR-ACH scores for three combinations of scales tested generally increased from approximately r = .05 for BDI scores at age 1 to a mean of .72 for BDIs administered at age 3. For ages 3 years and greater, mean correlations remained relatively stable across ages and were also substantial in magnitude (ages 3 to 12 years = .74; range = .40 to .94). Thus, BDI scores from children at or above age 2 years appeared to consistently predict WJR-ACH scores received at ages 6 to 12 years; however, the ability of the BDI to predict later scores on the WJR-ACH was weak when administered to children less than 18 months of age.

Provider Perspectives on Telepractice for Serving Families of Children Who are Deaf or Hard of Hearing.

Telepractice to deliver remote Part C early intervention (EI) services to families in their home is a rapidly-growing strategy under the Individuals with Disabilities Education Act (IDEA) to meet the needs of infants and toddlers who are deaf or hard of hearing. A survey was completed within a “learning community” comprised of staff from EI programs that were implementing telepractice to learn about their specific implementation strategies and challenges they faced. Twenty-seven individuals representing 11 programs responded. The results showed great variability in hardware and software, with many raising concerns regarding security. Primary challenges reported were internet connectivity and training in skills required to deliver telepractice services. The findings from this survey were valuable in guiding future areas of investigation for the learning community and ultimately improving telepractice in the field.

A Multisite Study Evaluating the Benefits of Early Intervention via Telepractice

This study sought to determine the effectiveness of telepractice as a method of delivering early intervention services to families of infants and toddlers who are deaf or hard of hearing. A comparison group design was applied to ascertain the child, family, and provider outcomes via telepractice compared with traditional in-person home visits. A total of 48 children and their families, along with 15 providers from 5 early intervention programs, across the country participated. Children in the telepractice group received more intervention, although the number of prescribed sessions was equal across groups. Analyses of covariance demonstrated that children in the telepractice group scored statistically significantly higher than children in the in-person group on the PLS-5 Receptive Language subscale and PLS-5 Total Language standard scores, and the groups scored similarly on other language measures. There were no statistically significant differences between groups in regard to family outcomes of support, knowledge, and community involvement. Analysis of video recordings of telepractice versus in-person home visits resulted in higher scores for provider responsiveness and parent engagement. This study supports the effectiveness of telepractice in delivering early intervention services to families of children who are deaf or hard of hearing. Further research involving randomized trials with larger, more diverse populations is warranted.

The Development of Statewide Policies and Procedures to Implement Telehealth for Part C Service Delivery

The use of telehealth has been discussed nationally as an option to address provider shortages for children, birth through two, enrolled in Part C of the Individuals with Disabilities Education Act (IDEA) Early Intervention (EI) programs. Telehealth is an evidence-based service delivery model which can be used to remove barriers in providing EI services to children and their families. In 2016, Colorado’s Part C Early Intervention (EI) program began allowing the use of telehealth as an option for providers to conduct sessions with children and their caregivers. This article outlines the process taken to develop the necessary requirements and supports for telehealth to be incorporated into EI current practice.

The Role of Family-led Disability Organizations in Supporting Families with Hearing-Related Concerns

2Hands & Voices Abstract A survey was conducted with state level chapters from Family Voices, Parent Training and Information Centers, and Parent–to-Parent USA to understand how their current activities support families of children with hearing-related concerns and to identify gaps in their ability to support families of children who are deaf or hard of hearing (DHH). These organizations reported that they are contacted with parent requests for information in regard to family support opportunities, early intervention, referral sources pertaining to hearing concerns, financial help, and providing information about legal rights. Results showed that the greatest challenges for these organizations were related to needing to connect families to financial resources pertaining to hearing-related needs, engaging families of children who are DHH in their organization’s activities, having resources available in other languages, and identifying pediatric providers that serve DHH children. Potential ways to strengthen the capacity of these organizations to meet the needs of families with hearing-related concerns as well as increasing their awareness of partnerships with the EHDI system are discussed.