RehabWire - Volume 11, Number 11, December 2009.

Parenting with a Disability

NIDRR Research in parenting with a disability falls primarily under Participation and Community Living, with some research in Technology for Access and Function, Health and Function, and Knowledge Translation.

NIDRR Grantees on the Cutting Edge.

National Center for Parens with Disabilities and Their Families Through the Looking Glass (H133A080034) led by Megan Kirshbaum, PhD; Paul Preston, PhD. Leslie J. Caplan, PhD, Project Officer.
Abstract: The National Center for Parents with Disabilities and Their Families targets three national populations: parents with diverse disabilities, family members, and service providers and trainees who have a particularly critical impact on parents. The Center’s activities target the most critical issues facing parents with disabilities and their families: custody and parental evaluations; family roles and personal assistance; paratransit; and intervention with parents with cognitive and intellectual disabilities. The overall goal of this project is to improve the quality of life among parents with disabilities and their families. This goal is met by incorporating the project’s research, development, training, and technical assistance and dissemination activities into four project objectives. The four project objectives are: (1) increase the national availability of accessible and disability appropriate resources for parents with diverse disabilities and their families; (2) increase knowledge of parenting with a disability among diverse parents, family members, and providers; (3) increase informed practice and informed decisions regarding parenting with a disability among providers; and (4) increase state and local legislative and policy changes to decrease discrimination against parents with disabilities and their children. The Center provides technical assistance to parents and providers; conducts focused trainings to diverse parents and providers; and nationally disseminates project materials and products consolidated from Center activities as well as from other NIDRR-funded projects. Center activities are guided by the following basic principles: (1) utility to parents, family members, and service providers; (2) social change to improve the lives of parents with disabilities and their families; (3) consumer involvement as integral to all activities; (4) value of consumer-based knowledge; (5) value of diverse perspectives; (6) use of multiple and accessible formats; and (7) dissemination and utilization as interactive and ongoing processes.
Find out more at: www.lookingglass.org

Parent-Infant Interaction Project (PIIP) Portland State University (H133G080132) led by Leslie J. Munson, PhD; Ruth Falco, PhD; David Allen, PhD. Scott Brown, PhD, Project Officer.
Abstract: The Parent-Infant Interaction Project (PIIP) develops an evidence-based curriculum for implementation by parents with intellectual disabilities and their professional or paraprofessional coaches within natural environments to enhance parent-infant interaction and child development. Goals of PIIP include: (1) develop a research-based curriculum, coaching model, and training materials for use by parents with intellectual disabilities and their coaches in a collaborative process to enhance the parent-infant relationship and nurture child development; (2) conduct single subject studies of the effects of PIIP coaching model, curriculum, and training materials, including multiple-baseline design studies across goals and the collection of additional qualitative data; and (3) field-test and evaluate the coaching model, curriculum, and training materials through a multi-method study across three different types of early childhood/parent support programs. Partners in PIIP include Early Head Start and Early Intervention/Early Childhood Special Education, as well as a program providing supports for parents with intellectual disabilities. The PIIP Coaching Model incorporates innovative strategies and applies technology that is accessible to individuals with intellectual disabilities. Innovative strategies include a model for coaching that focuses on self-determination and empowerment of parents as advocates and decision-makers for themselves and their child. The Infant-Caregiver Interaction Scale provides a tool to guide collaborative observation, goal-setting, and continuous feedback for parents and their coaches. The project develops accessible technology, including a DVD of examples of interaction activities with video-modeling, for use in coaching parents as they learn strategies to enhance parent-infant interaction within daily play activities. Strategies for planning individualized accommodations, such as easy-reading/picture activity schedules and menus, audio prompts, social stories, and self-management systems, to address parent-child needs are included in the curriculum.
Find out more at: www.jgcp.ku.edu

According to the National Center for Parents with Disabilities there are more than 9 million parents in the United States with some type of disability. That’s “15% of all American parents.”
Source: National Center for Parents with Disabilities. www.lookingglass.org/parents

Rehabilitation Research and Training Center on Participation and Community Living of Individuals with Psychiatric Disabilities University of Pennsylvania (H133B080029) led by Mark Salzer, PhD. Bonnie Gracer, Project Officer.
Abstract: The research of this center focuses on two core areas: (1) Enhancing the capacity of individuals and systems to maximize participation and community living through the advancement of theory, measures, methods, and intervention knowledge, with a focus on Centers for Independent Living, specific (education, parenting, mental health care) and broad participation domains, and efforts to address disparities in understudied areas; and (2) increased incorporation of mental health research findings into practice and policy through systematic reviews, partnering with multiple stakeholders to advance the use of knowledge, and providing training, dissemination, and technical assistance to change behaviors and practices of key stakeholders. The goal of this Center is to ensure, in the wake of the Olmstead decision, that individuals with psychiatric disabilities not only move from institutional care to more integrated settings but also are free to choose to participate in a wide range of roles in their communities. This Center capitalizes upon longstanding collaborations among three Philadelphia-based central partners, experience derived from previous research, and trusting and mutual partnerships with multiple stakeholders. These guarantee the project’s ability to conduct research that advances knowledge that meets the needs of end-users and effectively translate this knowledge into innovative, next generation policies and practices.
Find out more at: www.upennrrtc.org

Please note: These abstracts have been modified. Full, unedited abstracts, as well as any available REHABDATA citations, are available at naric.com.

In the United States, more grandparents share in the responsibility of caring for their grandchildren. They may already have disabilities or become unable to help as age-related disabilities develop. The National Center for Parents with Disabilities has guides, books, and other resources to help families adapt the tools and tasks of parenting to many levels of ability. Visit them at www.lookingglass.org or call 800/644-2666.

 

Current Literature - Selections from REHABDATA

Preston, P. (2008) Foreword. In Bishop, M. and Hicks, S. (Eds.), Hearing, Mother Father Deaf: Hearing People in Deaf Families. Washington, DC: Gallaudet University Press, ixxii. NARIC Accession Number: J56560. Project Number: H133A080034.
Abstract: Article introduces a book examining the experiences of hearing children of deaf adults (CODA). The author discusses his own experience as a CODA. welfare system in Philadelphia to determine the association between maternal mental illness and involvement in the child welfare system. Among the 4,827 mothers in the study, 7.2 percent had a serious mental illness and 4.4 percent had other psychiatric diagnoses. More than 14 percent of mothers with serious mental illness received child welfare services, compared with 10.8 percent of those with other psychiatric diagnoses, and 4.2 percent of those without a diagnosis. Mothers with serious mental illness were almost 3 times as likely as other mothers to have had contact with the child welfare system or to have lost custody of their children.

Lightfoot, E., LaLiberte, T. (2006)  The inclusion of disability as grounds for termination of parental rights in state codes. Policy Research Brief, 17(2), 12. NARIC Accession Number: O16652. Project Number: H133B031116.
Abstract: This brief examines state policies regarding termination of parental rights (TPR), focusing on the extent to which states use disability as grounds for termination. An analysis of legal documents revealed that many states include disability inappropriately in their TPR statutes, including using inappropriate terminology to refer to a person’s disability, using imprecise definitions of disability, and often focusing on disability rather than behavior. Currently, 36 states have specific grounds for termination for mental illness, 32 have grounds for intellectual or developmental disability, 18 have grounds for emotional disability, and 8 have grounds for physical disability. Of the states that do not include disability-related language in their TPR statutes, they all have general provisions that would allow TPR of parents with disabilities, though such a TPR would focus on the parent’s abusive or neglectful behavior rather than disability status.
This document is available online at naric.com

Callow, E. (2006) The adoption experience: A guide for prospective parents with disabilities and their advocates. NARIC Accession Number: O16944. Project Number: H133A040001.
Abstract: This guide is intended to help parents with disabilities understand and protect their rights during the childadoption process. Sections address how to start the process, types of adoptions, special laws which apply to prospective parents with disabilities, who is involved in the process, basic steps in the adoption process, and special steps prospective adoptive parents with disabilities can take during the home study phase and other key phases in the adoption process.

Bacon, D. (2006) Hands-on parenting: A resource guide for parents who are blind or partially sighted. NARIC Accession Number: O16946. Project Number: H133A040001.
Abstract: This resource guide provides ideas and suggestions for dealing with concerns and issues experienced by parents who are blind or partially sighted. The information was generated and compiled from ongoing discussions among parents with visual impairments. Topics include pregnancy and childbirth, caring for a newborn, caring for a sick child, parent-child interactions, feeding, organizing clothing, dental care, toilet training, transportation and traveling with children, monitoring a child in new environments, social issues, family roles, education children, and toys and games.

Where Can I Find More? A quick keyword search is all you need to connect to a wealth of disability and rehabilitation research. NARIC’s databases hold more than 80,000 resources. Visit www.naric.com/research to search for literature, current and past research projects, and organizations and agencies in the US and abroad.

ABLEDATA, NARIC’s sister project, lists tens of thousands of assistive technology products, both commercial and DIY. They have a great list of AT for child care (listed under Activities of Daily Living) at bit.ly/6vDTN4. Go to www.abledata.com to see the full range of products included in ABLEDATA, as well as a great collection of AT literature