Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: I am a parent of a child with disabilities and I need resources to help me help my child. What research, information, and resources are available? This edition of Answered Questions includes items that discuss an intervention to assist parents of children with intellectual and developmental disabilities (IDD) manage behavioral challenges; perspectives of parents on helping their children with disabilities engage in physical activity; tips on self-care while caring for family members with mental health conditions during a pandemic; a study on what factors helped or hindered Latina caregivers’ involvement in their children’s transition planning; assistive technology (AT) for infants, toddlers, and young children; individualized education programs (IEPs); and more. More about Answered Questions.
Researchers at the Enhancing Parenting Skills: Application of a Web-Based Three-Tiered Model (in English) project are using input from parents and other stakeholders using a Community-Engaged Research framework to develop the Tiered Online Training Support (TOTS) intervention, a web-based, three-tier model of parent training and support to manage the challenging behavior of their young children with intellectual and developmental disabilities at home and in the community. They test the efficacy of TOTS using a randomized controlled trial and disseminate the intervention for broad implementation in University Centers for Excellence in Developmental Disabilities. Through the development and evaluation of TOTS, researchers want to improve parenting skills, self-efficacy, problem-solving, and child behavior management to help parents help their children with IDD.
The Rehabilitation Research and Training Center (RRTC) on Employment of Transition-Age Youth with Disabilities (in English) generates evidence-based interventions to help youth to enter competitive integrated employment and addresses the need for evidence-based research for youth with disabilities, family members, school personnel, vocational rehabilitation counselors, and other stakeholders on information and interventions that can impact the employment outcomes of transition-age youth with disabilities. The RRTC provides evidence-based resources such as articles, briefs, guides, and fact sheets and provides training through webcasts, toolkits, and face-to-face meetings. The RRTC also shares the latest news on topics related to the employment of transition-age youth with disabilities.
From the NARIC Collection:
The article, The perspectives of parents of youth with disabilities toward physical activity: A systematic review (in English), discusses a study that examined published research literature pertaining to parents’ perspectives toward physical activity of youth with disabilities by describing study characteristics and major findings. The findings from this study suggest that parents have reported multiple reasons [CJ1] to engage their children with disabilities in physical activity. Yet, numerous barriers, such as lack of programs/time and their children’s disability, were reported that negatively impact participation in physical activities. The researchers note that parents are calling for the need for training provided by qualified professionals to enhance participation.
In the tip sheet, Parents chime in: Our self-care strategies while supporting loved ones with mental health conditions during a pandemic (in English), members of the Family Advisory Board of the NIDILRR-funded Learning and Working During the Transition to Adulthood Rehabilitation Research Training Center (Transitions ACR) (in English) share their thoughts on how they adapted their self-care strategies. The tip sheet also shares tips from the members on supporting their loved ones with mental health conditions in the face of the coronavirus pandemic (COVID-19).
Research In Focus:
The article, Latina Family Caregivers in Rural Areas Turn to Their Community to Support Young Adults with Disabilities in Transition, discusses a recent NIDILRR-funded study where researchers interviewed Latina immigrants in a rural town who were family members of young adults with disabilities to find out what factors helped or hindered their involvement in the transition planning for their children with disabilities. The researchers identified several common themes in the participants’ experiences: the importance of family, strained school relationships, language and citizenship challenges, and the importance of Latino community connections. The authors noted that Latino immigrant families of young adults with disabilities may face unique challenges that can limit their children’s prospects for employment and community participation after high school and this may be especially true for Latino families living in rural communities where services and highly qualified educators may be in short supply.
The PACER Center has published an article, Assistive Technology for Infants, Toddlers, and Young Children with Disabilities (PDF), that discusses studies that show how assistive technology (AT) may help small children with disabilities with their development as they grow up. The article also discusses the types of AT that may help young children, why AT is important for this population, how families may obtain AT for their child with disabilities, the Individuals with Disabilities Education Act (IDEA), where parents can learn more about IDEA and AT for children with disabilities, and more.
The article, Individualized Education Programs (IEP) from KidsHealth at Nemours (in English), defines IEPs and discusses how parents are crucial members of their child’s education team. The article also discusses who is eligible for an IEP, how IEPs are developed, who is in the education team¸ and the referral and evaluation process. The discussion also includes parents’ legal rights and more. This article is also available in English.
- The Center for Parent Information and Resources has an alphabetical list of resources for Spanish-speaking parents of children with disabilities in a variety of topics that range from the Americans with Disabilities Act (ADA) to support for parents, from parents’ rights to accommodations for children with disabilities, and more.
- The Christopher and Dana Reeve Foundation (in English) has published a webpage with information for parents of children with paralysis, which provides general information on organizations, resource centers, federal and state agencies, and programs that assist parents and families of children with paralysis. The webpage also discusses IDEA and how it applies to children with paralysis and their families and defines/discusses early interventions. Finally, it includes information on the State Children’s Health Insurance Program and provides a list of organizations that assist parents of children with paralysis and other disabilities. The Foundation also provides a resource guide on paralysis in Spanish.
- The National Assistive Technology Act Technical Assistance and Training (AT3) Center (in English) provides information about the Assistive Technology Act, State Assistive Technology Programs, and general assistive technology. Find your state AT program here at3center.net/state program (in English). AT3 shares information about financing AT devices and device loans, demos, and reutilization. The Explore AT section of the website is a clearinghouse for information and resources on a variety of assistive technologies. It provides links to reputable information sources on AT devices and services in the areas of education, employment, and community living.
- The Temple University RRTC on Community Living and Participation of People with Serious Mental Illness (TU Collaborative) (in English) provides various tools to help parents with mental health conditions and parents of children with mental health conditions. These tools includes resources on various topics related to community inclusion (in English), including parenting resources (in English); training and technical assistance (in English); and #CollabChats (in English), the TU Collaborative’s podcast series that introduces listeners to research findings and its application for increasing opportunities for individuals with mental illnesses to live and participate in the community.
Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.