Volume 7, Issue 2, Parenting with a Disability

In this edition of reSearch, we explore the topic of parenting with disabilities.  Individuals with disabilities are able and desire to experience all aspects of life such as employment, social activities including sports and recreation, romantic and intimate relationships, and child rearing. According to Through the Looking Glass (TLG), home to the National Center for Parents with Disabilities and Their Families, an estimated 4.1 million parents with reported disabilities in the United States have children under the age of 18; therefore, approximately 6.2 percent of American parents who have children under the age of 18 have at least one reported disability with rates varying for subpopulations (National Council on Disability, 2012).  Moreover, TLG estimates that at approximately 6.1 million children in the United States have parents with disabilities—9.1 percent of children in all of the United States (National Council on Disability, 2012).  Parents with disabilities include individuals that may not perceive themselves as having a disability such as individuals who are Deaf, hard of hearing, of short stature, or having a chronic condition such as diabetes.

Being a parent can be a challenge for anyone; however, parenting with a disability presents a unique set of difficulties.  Historically, individuals with disabilities wishing to start families face ignorance and discrimination, including policies of forced sterilization.  This is still an issue today, particularly for individuals with developmental, psychiatric, and intellectual disabilities.  Parents with disabilities rely on many supports to meet the unique and not-so-unique challenges of raising their children.  Like most parents, they look to formal and informal supports ranging from daycare and nannies to quick take out dinners on busy nights.  Parents with disabilities may also use personal assistance services, peer supports, accessible housing and transportation, and a variety of assistive technology

This edition of reSearch provides a “snapshot” of research on parenting with disability. This “snapshot” presents research related to parents with specific types of disability (i.e. developmental, psychiatric, sensory, and physical disabilities).  The combined search terms for this edition of reSearch included:  Parents with a disability and parenting with a disability. A listing of over 100 additional descriptor terms between the NARIC, CIRRIE, ERIC, and the PubMed databases can be found at the end of this document.

A search of the REHABDATA database resulted in 25 documents published between 2000 and 2012.  The CIRRIE database search resulted in two documents from 2007 and 2008.  The ERIC database search resulted in six documents between 2000 and 2012.  The Cochrane database search resulted in one document from 2010.  And finally a search of PubMed databases resulted in three documents between 2002 and 2011.  The complete citations are included in this research brief.

References

(2012).  Rocking the cradle:  Ensuring the rights of parents with disabilities and their children.  National Council on Disability.


NIDRR Funded Projects Related to Parenting with a Disability

In addition to document searches, we searched our NIDRR Program Database to locate grantees/projects related to aging with disabilities.  The search resulted in seven currently funded NIDRR projects and four projects that have completed their research activities.  Project information and their publications are offered as additional resources for our patrons.

Through the Looking Glass has significantly contributed to research on parenting with disability through these current and former NIDRR-funded grants:

Developing Adaptive Equipment and Techniques for Physically Disabled Parents and Their Babies within the Context of Psychosocial Services
Project Number:  H133G60036 (Completed research activities)
Phone: 800/644-2666 (V), 800/804-1616 (TTY), 510/848-1112 (V)
E-mail: tlg@lookingglass.org
www.lookingglass.org

Families with Disabilities Through the Life Cycle: Disability Culture Perspectives
Project Number: H133A110009
Phone: 800/644-2666 (toll-free voice), 510/848-1112 (V), 510/848-1005 (TTY)
E-mail: tlg@lookingglass.org
www.lookingglass.org

National Center for Parents with Disabilities and Their Families
Project Number: H133A080034
Phone: 800/644-2666 (toll-free voice), 510/848-1112 (V), 510/848-1005 (TTY)
E-mail: tlg@lookingglass.org
www.lookingglass.org

Parents with Disabilities and Their Adolescent Children
Project Number: H133G990130 (Completed research activities)
Phone: 800/644-2666 (V/TTY), 510/848-1112 (V/TTY)
E-mail: rolkin@lookingglass.org
www.lookingglass.org

Utilizing Mentor Disabled Parents
Project Number: G008720206 (Completed research activities)
Phone: 800/644-2666 (V/TTY), 510/848-1112 (V/TTY)
E-mail: tlg@lookingglass.org
www.lookingglass.org

Additional research projects related to parenting to disability:

AbleData
roject Number: ED-04-CO-0018/0007
Phone: 800/227-0216 (V), 301/608-8998 (V), 301/608-8912 (TTY)
E-mail: abledata@macrointernational.com
www.abledata.com

A Mixed Methods Study of Parenting, Children, and Recovery in Mothers with Severe Psychiatric Disabilities
Project Number: H133F080009 (Completed research activities)
Phone: 508/856-8712
E-mail: joanne.nicholson@umassmed.edu

Parent-Infant Interaction Project (PIIP)
Project Number: H133G080132
Phone: 503/725-4687
E-mail: munsonl@pdx.edu

The Parenting Options Project: A Development Project for Parents with Psychiatric Disabilities
Project Number: H133G70079 (Completed research activities)
Phone: 508/856-8721
E-mail: joanne.nicholson@umassmed.edu
www.umassmed.edu/pop

Personal Assistance Services (PAS) in the 21st Century
Project Number: H133B080002
Phone: 866/727-9577, 415/502-7190 (V), 415/502-5216 (TTY)
E-mail: melinda.neri@ucsf.edu
www.pascenter.org

Rehabilitation Research and Training Center for Community Living and Employment for Individuals with Intellectual and Developmental Disabilities
Project Number: H133B080005
Phone: 612/624-6024
E-mail: lakin001@umn.edu
rtc.umn.edu

Rehabilitation Research and Training Center on Community Living
Project Number: H133B110006
Phone: 785/864-4095 (V/TTY)
E-mail: glen@ku.edu
www.rtcil.org

Rehabilitation Research and Training Center on Participation and Community Living of Individuals with Psychiatric Disabilities
Project Number: H133B100037
Phone: 215/204-6779
E-mail: mark.salzer@temple.edu
www.tucollaborative.org


Documents from NARIC’s REHABDATA search listed are listed below:

2012

Cretchley, J., Pakenham, K.I., & Tilling, J.  (2012).  Parenting difficulties and resources: The perspectives of parents with multiple sclerosis and their partners.   Rehabilitation Psychology, 57(1), 52-60.
NARIC Accession Number: J63446
ABSTRACT: This exploratory study provides descriptive data on the difficulties and resources associated with parenting with multiple sclerosis (MS). Qualitative data on parenting difficulties and resources were obtained from parents with MS and their partners in the form of written responses to two open-ended questions in a questionnaire survey. A total of 145 parents with MS and 91 partners were recruited through MS societies in Australia; 119 parents with MS and 64 partners provided qualitative data. The data were analyzed using the Leximancer text analysis software. Ten difficulty themes emerged (ordered from the most to the least strong): activities, time, MS, fatigue, sons, partner, daughters, housework, family, and mood. Some of these difficulties were more closely affiliated with one parent, whereas others were shared, affecting both parents. Eight resource themes emerged: school, time, assistance, chores, friends and family, spouse, sons, and driving. Parents with MS and partners accessed common and unique resources. The complex array of interacting parenting difficulties was mirrored by a similarly multifaceted assortment of resources required to address the parenting difficulties. Findings identify key interrelated parenting needs that can be targeted by services and policy development.

2011

Buckland, K., Callow, E., & Jones, S.  (2011).  Parents with disabilities in the United States: Prevalence, perspectives, and a proposal for legislative change to protect the right to family in the disability community.  Texas Journal on Civil Liberties and Civil Rights, 17(1), 9-41.
NARIC Accession Number: J63415
Project Number: H133A080034; H133A110009
ABSTRACT: Article examines the causes of and solutions to the high rates of removal of children from parents with certain disabilities. Millions of children of parents with disabilities are being removed from their families at alarming rates and are suffering from the effects that accompany such removals. The vast majority of these removals are unnecessary. They are based on a handful of major causes that can be remedied through legislation. Grassroots disability rights organizations in a number of states, including Idaho, Kansas, and California have altered their state statutes governing custody of children in a variety of ways. These disability-specific legislative changes are presented as models for similar legislation at the state or federal level.

LaLiberte, T., Lightfoot, E.  (2011).  Parental supports for parents with intellectual and developmental disabilities.   Intellectual and Developmental Disabilities (formerly Mental Retardation), 49(5), 388-391.
NARIC Accession Number: J62235
ABSTRACT: Article examines the rise of the concept of parental supports within child welfare legislation, defines parental supports for parents with disabilities, and discusses the need for a normalization of the concept of parental supports in the field of intellectual and developmental disabilities.

2010

(2010).  Parenting without sight what attorneys and social workers should know about blindness.   Braille Monitor, 53(10), 786-796.
NARIC Accession Number: J59791
ABSTRACT: Article provides information about blindness for social workers, family court lawyers, and others concerned with the well-being of children and families. It is intended to help child protection services understand how blind parents are able to care for their children.

2009

Albert, K., Biebel, K., Gerhenson, B., Nicholson, J., & Williams, V.  (2009).  Family options for parents with mental illnesses: A developmental, mixed methods pilot study.   Psychiatric Rehabilitation Journal (formerly Psychosocial Rehabilitation Journal), 33(2), 106-114.
NARIC Accession Number: J57158
ABSTRACT: Article describes Family Options, a rehabilitation intervention focusing on recovery and resilience for parents with serious mental illnesses and their children and presents the findings of a pilot study of 22 mothers participating in the intervention at 6 months after enrollment. Preliminary findings indicated that Family Options is serving the desired target population of parents and families, successfully achieving or tending towards hypothesized outcomes, and providing services consistent with the intervention as conceptualized.

Harris, B., Hong, S., & Rosenblum, L.P.  (2009).  Experiences of parents with visual impairments who are raising children.   Journal of Visual Impairment & Blindness, 103(2), 81-92.
NARIC Accession Number: J56285
ABSTRACT: Study examined the concerns, coping strategies, and feelings about raising children of parents with visual impairments. Interviews were conducted with 67 parents with visual impairments from 28 states and the District of Columbia. Respondents revealed strategies for their children's safety, transportation, homework, and other parenting tasks, and provided information about the emotional impact on their children and others' reactions to them as parents. Recommendations for current and future parents who are visually impaired and professionals are discussed.

2008

Buckland, K., Callow, E., & Jones, S.  (2008).  The disability movement and a new focus on legislating protection for children in families with parental disability.  
NARIC Accession Number: O17447
Project Number: H133A040001, H133A080034
Abstract: Article addresses the issue of the removal of children from the custody of parents with disabilities. The seven sections present a case for sweeping legislative changes to protect the children in families with parental disability from unnecessary removals and the accompanying trauma. Section I discusses family and dependency laws in general, and the history of parenting with a disability in America. Section II looks at the affected population, data we have collected on the demographics of that group and rates of removal. Section III outlines the identified causes of removals and Section IV examines the effects on children. Section V reviews the state legislation that has been developed specifically to combat the problems in practice and strategy and unintentionally applicable federal legislation. Section VI proposes model elements for future remedial legislation if it is to be useful and discusses the possibility for a federal versus state fix. Section VII concludes with a brief examination of developments at the international level.

2007

Corbus, K., & Hansen, S.  (2007).  Designing support groups for parents with intellectual disabilities.  
NARIC Accession Number: O16949
Project Number: H133A040001
ABSTRACT: Training module is designed to facilitate any individual or organization interested in forming a group for parents with intellectual disabilities. It is based on the development of Through the Looking Glass's support group, the "In Crowd". Sections include: objectives of the module, the rationale for and benefits of support for parents with intellectual disabilities, video of testimonials and group discussions, concrete organizational ideas and small details that are important to discuss, and the process of moving toward disability identification, empowerment, and coping skills. Module includes a worksheet to assist in the design of a group; a DVD with video clips, and the publication, "Strategies and Adaptations in Working with Parents with Intellectual Disabilities."

2006

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.

Bassett, H., King, R., & Lloyd, C.  (2006).  The development of an observation tool for use with parents with psychiatric disability and their preschool children.   Psychiatric Rehabilitation Journal (formerly Psychosocial Rehabilitation Journal), 30(1), 31-37.
NARIC Accession Number: J51068
ABSTRACT: Article discusses the development and testing of an observational tool suitable for evaluating programs designed to enhance the parenting skills of people with psychiatric disabilities. The instrument needed to be able to evaluate parent-child interaction, be suitable for use in a group setting, require minimum training and equipment, be functional and easy to use, and have acceptable levels of reliability and validity. A pilot study involving mothers with a psychiatric disability and their preschool children provided information of the face validity of the tool, its operational utility, an preliminary data on its reliability. The revised tool yielded a single scale with acceptable reliability. It had discriminative validity and concurrent validity with non-independent global ratings of parenting.

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 child adoption 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.

Callow, E.  (2006).  The child protective service/dependency court experience: A guide for parents with disabilities and their advocates.  
NARIC Accession Number: O16943
Project Number: H133A040001
ABSTRACT: This guide is intended to help parents with disabilities understand and protect their rights in a child dependency case. Sections address when a parent's right to their child can be terminated, the steps that lead to termination or parental rights, which parts of the state government are involved in the dependency process, and what special steps parents with disabilities need to take at each phase of the process and what special laws apply to them.

Callow, E.  (2006).  The family court experience: A guide for parents with disabilities and their advocates.  
NARIC Accession Number: O16940
Project Number: H133A040001
ABSTRACT: This guide is intended to help parents with disabilities understand and protect their rights in a child custody case. Sections address when and how to request custody, types of custody arrangements, steps involved in securing a custody arrangement through stipulation or judgment, who may be involved in a family law proceeding addressing custody, evaluations, special steps that parents with disabilities may want to take at each phase of the process, and special laws that apply to parents with disabilities.

Corbus, K., Hansen, S., & Tuleja, C.  (2006).  Strategies and adaptations in working with parents with intellectual disabilities.  
NARIC Accession Number: O16950
Project Number: H133A040001
Abstract: This guide provides helpful information and concrete ideas for working successfully with parents with intellectual disabilities. Sections address: behavioral indicators of an intellectual limitation or learning difficulties, common personal issues, fundamental elements of intervention, adaptive approaches and the use of self, adaptive strategies that maximize learning, and self-care.

LaLiberte, T., & Lightfoot, E.  (2006).  The inclusion of disability as grounds for termination of parental rights in state codes.   Policy Research Brief, 17(2), 1-11.
NARIC Accession Number: O16652
Project Number: H133B031116
Available in full-text atsearch.naric.com/research/rehab/download.cfm?ID=103317
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.

Preston, P.  (2006).  Visible, diverse and united: A report of the Bay Area parents with disabilities and deaf parents task force.  
NARIC Accession Number: O16948
Project Number: H133A040001
ABSTRACT: Report compiles the minutes taken during the meeting of the Bay Area Parents with Disabilities and Deaf Parents Task Force on October 30, 2006. The goal for this meeting was to identify and prioritize problem areas and potential solutions for parents with disabilities and their children living in the Bay Area. Following presentation on specific issues affecting a broad range of parents with disabilities, the Task Force divided into five breakout sessions, each focusing on a particular issue affecting parents with disabilities and their children: transportation, recreation, school systems, parental rights, and programming/support systems.

2005

(2005).  Parenting with a mental illness: Child welfare and custody issues.   Community Integration Tools [Fact Sheet]. 
NARIC Accession Number: O16022
Available in full-text atsearch.naric.com/research/rehab/download.cfm?ID=99655
Project Number: H133B031109
ABSTRACT: Fact sheet addresses child custody issues for parents with psychiatric disabilities. It offers advice on how to stay mentally healthy and how to deal with the legal system for parents with mental illness who child has been removed from their custody by the local child welfare agency.

(2005).  Parenting with a mental illness: Positive parenting and child resilience.   Community Integration Tools [Fact Sheet].
NARIC Accession Number: O16376
Project Number: H133B031109
Available in full-text atsearch.naric.com/research/rehab/download.cfm?ID=101453
ABSTRACT: Fact sheet offers advice to parents with mental illness on how to reduce the chances that their child will develop emotional or behavioral problems in response to difficult situations. It discusses the concept of resilience in children, which is defined as the likelihood that a child will succeed, even when faced with a risky or harmful situation. Special considerations for adolescents and a list of resources are provided.

(2005).  Parenting with a mental illness: Programs and resources.  
NARIC Accession Number: O17115
Project Number: H133B031109
Available in full-text atsearch.naric.com/research/rehab/download.cfm?ID=105965
ABSTRACT: This guidebook offers programs, resources, tips and suggestions to support parents with mental illness. It is designed to help parents, providers, and advocates find information about programs in their area.

Callow, E.  (2005).  Good practice . . . upholding parents' rights.   Disability, Pregnancy & Parenthood International, 71, Winter 2010/11.
NARIC Accession Number: O16947
Project Number: H133A040001
ABSTRACT: Author, who is an attorney, describes how she assists parents with disabilities, advocates, and professionals when they are involved in child custody litigation. She includes information on legal resources for parents in the United States and in the United Kingdom.

Gudenzi, M. (Ed.).  (2005).  Parenting with a disability.  
NARIC Accession Number: O16942
Project Number: H133A04000
Abstract: Newsletter includes items about the activities of Through the Looking Glass (TLG), an organization that provides research, training, and services for families in which a child, parent, or grandparent has a disability. In this issue: TLG’s resources for parents with intellectual disabilities, new training module for occupational therapists, 2005 college scholarships, custody and legal resources, a new book on pregnancy and birth, and systems development in Kansas.

Tuleja, C., & Rogers, J.  (2005).  Parenting after spinal cord injury: From rehabilitation to home.   In S. L. Groah, ed., Managing spinal cord injury: A guide to living well with spinal cord injury, Washington, DC: NRH Press, 226-243.
NARIC Accession Number: J52806
Project Number: H133A040001
ABSTRACT: Chapter provides information about raising children for parents with spinal cord injury. Discussion focuses on baby and toddler care, school years, and family recreation.

2003

Baer, R.L., Kirshbaum, M., & Taube, D.O.  (2003).  Parents with disabilities: Problems in family court practice.   Journal of the Center for Families, Children, and the Courts, 4, 27-48.
NARIC Accession Number: J52969
Project Number: H133A980001
ABSTRACT: Article examines the barriers that parents with disabilities face in child custody cases. Examples are provided of biased assumptions in the judicial approaches to four broad classes of disability: physical, sensory, cognitive, and psychiatric. Absent or poorly articulated statutory and professional guidelines for conducting child custody evaluations, the relative unavailability of legal services, attitudinal and accessibility barriers, and lack of disability awareness, knowledge, and skill in family courts are described as evidence of a legal structure that has not addressed bias against parents with disabilities. Suggestions are made for improving the functioning of family court to provide realistic, positive options and accommodations for parents with disabilities and their children.

Cameron, N., & Swain, P.A.  (2003).  Good enough parenting: Parental disability and child protection.   Disability & Society,18(2), 165-177.
NARIC Accession Number: J45396
ABSTRACT: Presents findings from research examining court practices in Australia regarding child protection matters involving parents with disabilities. Results indicated that parents with a disability often had no representation in courts. Concerns were more likely to be raised regarding neglect, or sexual or emotional abuse, when parental disability was noted. Formal court interventions only infrequently made recommendations regarding support, training, and advice such parents needed in order to retain care of their children.

2000

Llewellyn, G., & McConnell, D.  (2000).  Disability and discrimination in statutory child protection proceedings.   Disability & Society, 15(6), 883-895.
NARIC Accession Number: J40853
ABSTRACT: Article on discrimination faced by parents with mental retardation in statutory child protection proceedings. The authors briefly review the literature on rates of child removal and circumstances in which removal is predetermined. Political and social conditions underlying discrimination are discussed, including outmoded and stereotypic beliefs about persons with mental retardation; an expectation that families should be autonomous and independent, so that parents who are themselves dependent should not be heads of families; an emphasis on individual responsibility, leading to false attribution of parenting difficulties to the disability rather than to poverty and social factors; and a focus on individual rights, leading to an adversarial conflict between parental rights and the rights of children.


Documents from the Center for International Rehabilitation Research Information and Exchange (CIRRIE-2) search at cirrie.buffalo.edu are listed below:

2008

Pixa-Kettner, U.  (2008).  Parenting with intellectual disability in Germany: results of a new nationwide study.  Journal of Applied Research in Intellectual Disabilities, 21, 315-9.
No abstract is available. 

2007

De Vries, J.N., Isarin, J., Reinders, J.S., & Willems, D.L.  (2007).  Parenting by persons with intellectual disability: An explorative study in the Netherlands. Journal of Intellectual Disability Research, 51(7), 537-544.
No abstract is available. 


Documents from the Education Resource Information Center (ERIC) search at www.eric.ed.gov are listed below:

2012

(2012).  Rocking the cradle: Ensuring the rights of parents with disabilities and their children.  National Council on Disability.
ERIC #: ED535704
ERIC Full-Text: www.eric.ed.gov/ERICWebPortal/contentdelivery/servlet/ERICServlet?accno=ED535704
ABSTRACT: Despite a dark history marked by the eugenics movement, increasing numbers of people with disabilities are choosing to become parents. Recent research reveals that more than 4 million parents--6 percent of American mothers and fathers--are disabled. This number will unquestionably increase as more people with disabilities exercise a broader range of lifestyle options as a result of social integration, civil rights, and new adaptive technologies. Likewise, there has been a dramatic increase in the number of veterans who are returning from war with service-connected disabilities, some of whom may already be parents and others who will enter parenthood after acquiring their disability. The National Council on Disability (NCD) undertook this groundbreaking study to advance understanding and promote the rights of parents with disabilities and their children. This report provides a comprehensive review of the barriers and facilitators people with diverse disabilities--including intellectual and developmental disabilities, psychiatric disabilities, sensory disabilities, and physical disabilities--experience when they are exercising their fundamental right to create and maintain families. This report also describes the persistent, systemic, and pervasive discrimination against parents with disabilities. It analyzes how U.S. disability law and policy apply to parents with disabilities within the child welfare and family law systems, and the disparate treatment of parents with disabilities and their children. Examination of the impediments prospective parents with disabilities encounter when adopting or accessing assisted reproductive technologies provides further examples of the need for comprehensive protection of these rights. This report sets forth suggested action to ensure the rights of parents with disabilities and their children. Whether such action is taken at the state or federal level--as an amendment or a new law--the need for action could not be more timely or clear. Appended are: (1) Interviews; (2) State-by-State Analysis of Dependency Statutes and Their Inclusion of Disability; (3) Model Legislation (State or Federal); and (4) Proposed ADA Amendment.

Brillhart, L., Lightfoot, E., & Yuan, S.  (2012).  A chance to parent.  Exceptional Parent, 42(2), 39-41.
ERIC #: EJ968423
ABSTRACT: While parents with disabilities may face big challenges, with appropriate supports, many can be great parents. Just like other parents, they do not have to be responsible for every part of childrearing all by themselves. All parents rely on supports to help raise their children, such as day care, carpools, schools, babysitting co-ops, or advice from other parents. Those with disabilities might need some additional supports such as an adaptive crib or the use of a mobile device to help remember tasks, or personal supports designed to assist them, such as in-home parenting training, respite care, budgeting assistance, or homework assistance. It can be a relief for parents with disabilities to realize that, just like other parents, they do not have to be responsible for every part of childrearing all by themselves. Lindsay Brillhart and her partner Phil, have the supports now that they need for their family. Drawing on her own experiences as a mother with a disability, Lindsay serves on the board of a new international organization, The Association for Successful Parenting: Enhancing the Lives of Families when Parents Have Learning Difficulties (TASP). Many other states have "pockets of excellence" in support for parents with disabilities, often nurtured by their University Centers for Excellence in Developmental Disabilities (UCEDDs), members of the Association of University Centers on Disabilities (AUCD) Network.

2011

Coren, E., Hutchfield, J., & Thomae, M.  (2011).  Parenting training for intellectually disabled parents: A Cochrane Systematic Review.  Research on Social Work Practice, 21(4), 432-441.
ERIC #: EJ928170
ABSTRACT:  Objectives: This article presents a Cochrane/Campbell systematic review of the evidence on the effect of parent training to support the parenting of parents with intellectual disabilities. Method: Randomized controlled trials (RCTs) comparing parent training interventions for parents with intellectual disability with usual care or with a control group were included in the review. Outcomes: The attainment of parenting skills specific to the intervention, safe home practices, and the understanding of child health were the outcomes of interest. Results: Three trials met the inclusion criteria. All three indicated improved parenting skills following parenting training. Conclusions: The quality of the evidence is moderate to low, with limited information available to assess possible bias. The presented evidence seems promising; however, there is a need for larger RCTs of interventions before conclusions can be drawn about the effectiveness of parent training for this group of parents.

2007

Tarleton, B., & Ward, L.  (2007).  "Parenting with support": The views and experiences of parents with intellectual disabilities.  Journal of Policy & Practice in Intellectual Disabilities, 4(3), 194-202. 
ERIC #: EJ839416
ABSTRACT: The international literature on parents with intellectual disabilities (ID) has focused on concerns about their ability to parent and strategies to enable them to develop parenting skills. Traditionally, the views and experiences of parents themselves have not been the focus of studies. With this in mind, the authors talked to a cohort of 30 parents as part of a mapping study of issues and positive practice in supporting parents with ID and their children in the UK. They report on the parents' experiences of being provided with ongoing, proactive support, to enable them to parent to the best of their ability and describe the types of practical and emotional support that helped them to develop parenting skills and overcome wider problems, such as falling into debt, that were impacting their families. Enabling adults with ID to "parent with support" appeared to safeguard their children, whose health and safety is a primary object of concern for services. If parents had access to supports, they could keep their children and enjoy an enhanced quality of family life together. The authors conclude that with appropriate help from services parents can be enabled to support each other, to develop confidence, and to engage more positively with the professionals and systems responsible for safeguarding the welfare of their children.

2003

Ackerson, B.J.  (2003).  Parents with serious and persistent mental illness: Issues in assessment and services.  Social Work, 48(2), 187-94.
ERIC #: EJ665761
ABSTRACT: Reviews the literature on mentally ill parents and addresses conceptual issues in assessment and services. Critiques methods of assessment and recommends more appropriate and comprehensive assessment protocols. Model programs are discussed with a focus on the development of competent parenting skills combined with social supports for parents who have a serious and persistent mental illness.

2000

Kirshbaum, M.  (2000).  A disability culture perspective on early intervention with parents with physical or cognitive disabilities and their infants.  Infants and Young Children, 13(2), 9-20.
ERIC #: EJ616379
ABSTRACT: This article describes how a disability culture perspective has informed research and early intervention serving parents with physical disabilities and their infants and an approach to research, resource development, and early intervention that has evolved in a community-based organization in response to the unmet needs of parents with disabilities.


Document from the Cochrane Database of Systematic Reviews search at www.thecochranelibrary.org are listed below:

2010

Carina, G., Esther, C., Jemeela, H., & Manuela, T.  (2010).  Parent training support for intellectually disabled parents.  Cochrane Database of Systematic Reviews, 2010, No. 6, John Wiley & Sons, Ltd.
ID: CD007987
ABSTRACT:   Background: Intellectual disability may impact on an individual’s capacity to parent a child effectively. Research suggests that the number of intellectually disabled people with children is increasing. Children of parents with intellectual disabilities may be at increased risk of neglectful care which could lead to health, developmental and behavioral problems, or increased risk of intellectual disability.  However, there is some indication that some parents with intellectual disabilities are able to provide adequate child care if they are given appropriate training and support to do so.  Objectives: To assess the effectiveness of parent training interventions to support the parenting of parents with intellectual disabilities.  Search methods: We searched the following databases: Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library), MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, Sociological Abstracts, Dissertation Abstracts International, MetaRegister of Controlled Trials, and ZETOC.  Selection criteria: Randomized controlled trials comparing parent training interventions for parents with intellectual disabilities with usual care or with a control group. Outcomes of interest were: the attainment of parenting skills specific to the intervention, safe home practices and the understanding of child health.  Data collection and analysis: Two review authors independently assessed risk of bias and undertook data extraction.  Main results: Three trials met the inclusion criteria for this review but no meta-analysis was possible. One study reported improved maternal-child interaction following group parent training compared with the control group. The second study reported some improvements in parents knowledge of life threatening emergencies, ability to recognize dangers and identify precautions and smaller improvements in their ability to implement precautions, use medicines safely and recognize child illness and symptoms. The third study reported improvement in child care and safety skills following the intervention.  Authors' conclusions: There is some risk of bias in the included studies, with limited information available to assess possible bias and to fully assess the findings of one included study. Whilst the evidence presented here does seem promising with regard to the ability of such interventions to improve parenting knowledge and skill in this population, there is a need for larger RCTs of interventions before conclusions can be drawn about the effectiveness of parent training for this group of parents.


Documents from the National Library of Medicine PubMed search at www.pubmed.com are listed below:

2011

Bowler, E.  (2011).  Disabled parents: Coming through louder and clearer.  The Practising Midwife, 14(3), 19-20, 22.
PMID #: 21473321
No abstract is available.  

2005

Allen, S.M., & Hyatt, R.R., Jr.  (2005).  Disability as a "family affair": Parental disability and childhood immunization.  Medical Care, 43(6), 600-6.
PMID #: 15908855
ABSTRACT:  BACKGROUND: There is a substantial body of research focusing on the health and healthcare utilization of individuals with a disability but less has been done to examine the impact of disability on nondisabled family members.  OBJECTIVE: We sought to investigate the influence of parental disability on children's healthcare as measured by the timely receipt of childhood immunizations.  RESEARCH DESIGN: Observations on 11,997 children between the ages 2 and 5 years were obtained from the 1994 and 1995 United States National Health Interview Surveys representing 27,534,841 children when weighted. Children are determined to be in compliance with the Centers for Disease Control immunization protocol at age 24 months if they have received 4 DTP, 3 polio, and 1 MMR vaccine dose. Disability is characterized using the activity and personal care scales from the National Health Interview Surveys. The data were analyzed using logistic regression controlling for factors identified in prior research to be related to timely receipt of immunization.  RESULTS: Children living with a parent who is unable to provide his or her own personal care are 65 percent less likely (odds ratio = 0.35; 95 percent confidence interval = 0.17-0.70) to be immunized on time than children who live with parent(s) who do not have a disability. Children of parents who are limited in their personal care, and children of parents who have work limitations, are not less likely than children of nondisabled parents to receive immunizations on time.  CONCLUSIONS: The impact of a parent's severe disability extends to the health care of dependent children. These findings argue for research to investigate the full scope of the effects of parental disability on children's health and for policies that address this impact.

2002

Wilkins, A.  (2002).  Disabled parents and TANF.  NCSL Legisbrief, 10(41), 1-2.
PMID: 12365442
No abstract is available.  


Quick Looks

Online Resources Related to Parents and Families with Disabilities

Abledata: Parents with Disabilities Resource Center
www.abledata.com/abledata.cfm?pageid=113573&top=16046&sectionid=19326

Alliance National Parent Technical Assistance Center (PTAC)
The is an innovative project that supports a unified technical assistance system for the purpose of developing, assisting and coordinating Parent Training and Information Projects and Community Parent Resource Centers under the Individuals with Disabilities Education Act (IDEA).
Toll Free:  888/248-0822, 952/838-9000 (V), 952/838-0190 (TTY)
Email: alliance@taalliance.org
www.parentcenternetwork.org/national/resources.html
Locate Parent Training and Information Centers and Community Parent Resource Centers:  www.parentcenternetwork.org/allregions.html

Beach Center on Disability at the University of Kansas
Together with families and individuals affected by disability, the Beach Center on Disability strives to make a significant and sustainable difference in the quality of life of families and individuals.
Phone:  785/864-7600 (V), 785/864-3434 (TTY)
www.beachcenter.org

Colorado Cross-Disability Coalition’s Center for Rights of Parents with Disabilities
Phone:  303/839-1775
www.ccdconline.org/crpd/crpd.htm

Exceptional Parent – Eparent.com
Online resource providing information, support, ideas, encouragement and outreach for parents and families of children with disabilities and the professionals that work with them. 
Toll Free:  800/372-7368
www.eparent.com

Family Village Coffee Shop – Regional Parent-to-Parent Programs
Email:  familyvillage@waisman.wisc.edu
Locate a Regional Parent-to-Parent Program: www.familyvillage.wisc.edu/cof_p2p.htm
www.familyvillage.wisc.edu/general/parentswdis.html

Listing of National Organizations Serving Families with Disabilities
mpd.la-archdiocese.org/NOSFD.htm

National Parenting with a Disability (blog)
parenting-with-a-disability.blogspot.com

Through the Looking Glass’s National Parent-to-Parent Network
lookingglass.org/parents/ppn.php

Parents with Disabilities Online
Provides information, support and resources to parents with disabilities.
www.disabledparents.net

Parenting with a Mental Illness: Programs and Resources Guide
A comprehensive resource guide from the UPenn Collaborative to help parents, providers, and advocates find information about programs in their area.
Full-text of the guide is available here.

Spinal Cord Injury Information Network: Parenting
www.spinalcord.uab.edu/show.asp?durki=21699&site=1021&return=21874

WheelchairNet’s Parenting and Using a Wheelchair section
www.wheelchairnet.org/WCN_Living/parenting.html


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About reSearch:

reSearch is a new information product from the National Rehabilitation Information Center (NARIC). Each issue is based on real-world queries received by our information specialists from researchers, educators, and rehabilitation professionals around the world.

We search several sources both in-house and online, to fill these requests including:

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- NARIC Information and Media Team