Research Briefs

Here is a selection of briefs--concise summaries of evidence-based, community-centric research--chosen with parents, disability professionals, and researchers in mind. Our briefs encompass a number of topics relating to disability and parenthood, including experiences of pregnancy among women with physical disabilities, self-advocacy tips for parents with disabilities, creating solid interventions for parents with mental illness and their families, and ensuring culturally competent and responsive care for parents with all disabilities.

A mother with a developmental disability holds her baby on her shoulder.


Parents With and Without Disabilities: Demographics, Material Hardship, and Program Participation

Parents with disabilities and their children encounter significant economic hardships, including unstable housing, food insecurity, and difficulty paying their bills. This study outlines ways that researchers, policymakers, and program coordinators can develop programs and supports for low-income parents with disabilities and their families.

Comparatively little research has been conducted to understand the economic well-being of parents with disabilities. The bidirectional relationship between disability and poverty is well-established. People who have disabilities are more likely to experience poverty. And families living in poverty are more likely to have children with disabilities. However, the situation of parents with disabilities has not been widely investigated.

Behavioral and Cognitive Outcomes of Young Children in the United States Whose Mothers have Intellectual Disabilities

The children of mothers with intellectual disabilities are more likely to have behavioral and cognitive difficulties than their counterparts without intellectual disabilities. It is likely that systemic factors, like poverty, lower educational attainment, and discrimination, contribute to these disparities. This research summary outlines some of the struggles these families encounter and methods that policymakers can use to help address these inequities.

This study examined the behavioral and cognitive outcomes of 3-year-old US children of mothers with ID compared with children of mothers without ID. We found that children of mothers with ID had poorer behavioral and cognitive outcomes in comparison to same-age children of mothers without ID. Notably, however, children of mothers with ID were not at increased risk of being aggressive unless their family income was below 200% of the federal poverty level. Further, families headed by mothers with ID faced multiple hardships related to socioeconomic factors, limited social supports, and poor self-reported health. Accordingly, policies and programs must be implemented to address the needs of these families.

Postpartum Hospital Utilization among Massachusetts Women with Intellectual and Developmental Disabilities

Women with intellectual and developmental disabilities experience significant reproductive health disparities compared to their counterparts without IDD, including pregnancy complications and adverse birth outcomes like pre-eclampsia, hemorrhages, and Cesarean sections. This brief summarizes research on hospital utilization among women with IDD, maternal health, and outcomes among newborn children of mothers with IDD.

Women with intellectual and developmental disabilities (IDD) have vastly different social, economic, and health outcomes from their counterparts without IDD; in addition, they are frequently denied sexual and reproductive autonomy and are at higher risk of pregnancy complications and adverse birth outcomes such as pre-eclampsia, eclampsia, venous thromboembolism, chorioamnionitis, antepartum hemorrhage, labor inductions, and Cesarean sections (Brown et al, 2016; Mitra et al, 2015; Parish et al, 2015). Women with IDD are also less likely to use adequate and timely prenatal care (Mitra et al, 2015).

Developing Peer Supports for Parents with Mental Illness

Parents with mental illnesses can create strong support networks for their peers. Learn about how to structure good peer-support programs in this research briefs. 

Parents living with serious mental illness (SMI) often experience significant challenges including social isolation, financial hardship, concerns about the development and well-being of their children, family disruption, and limited access to community-based resources. Moreover, the challenges associated with parenting are often not addressed in the course of routine mental health care.  

 

Advocacy and Support Tips for Parents on the Autism Spectrum

Are you a parent on the autism spectrum? Here is a list of advocacy and support tips you can use to get support and fight for your rights as a parent.

Autistic parents, like other people with disabilities, can take good care of their children. It’s important for parents on the autism spectrum to understand their strengths and weaknesses to help them become the best parents they can be. Getting help with difficult things doesn’t mean that autistic people are bad parents. Read the brief 

Advice and Information for Professionals Working with Parents on the Autism Spectrum

Geared toward professionals working with parents on the autism spectrum, this guide outlines ways that medical practitioners, social workers, child welfare workers, and others who work with members of this population can accommodate their clients' needs. 

Despite the deep-set cultural stigma they encounter, parents on the autism spectrum are fully able to take care of their children successfully. The key to this success is identifying parents’ strengths and weaknesses and ensuring that they and their families are connected to robust support networks that will help them create effective mental frameworks for approaching parenting, improve their self-efficacy, and advocate for their children in professional settings. Read the brief 

Advice and Facts for Mothers and Expecting Mothers with Intellectual Disabilities

If you are a parent with an intellectual disability, you may need help to get the care and support you need. This guide shares tips you can use to get help and fight for your rights. 

Some mothers have intellectual disabilities. Having an intellectual disability means it is harder to learn and understand things. But everyone can still learn new things. Sometimes it just takes longer. Having an intellectual disability can also mean it is hard to do some things by yourself, so you may need extra help. Mothers with intellectual disabilities can still be good parents and raise their children. Read the brief 

Advice for Professionals Working with Parents with Intellectual Disabilities

Professionals working with parents with intellectual disabilities can use this brief to learn strategies to communicate effectively, provide culturally competent support, and accommodate their clients' needs. 

Researchers and professionals are increasingly aware of the needs of parents with intellectual disabilities. However, there are still significant gaps in the experiences of parents with and without intellectual disabilities. Researchers from around the world and US government agencies have found that parents with intellectual disabilities face stereotyping, stigma, unequal health outcomes, poverty, and other adverse factors. A British study showed... Read the brief

Parents with Mental Illnesses and the Adoption and Safe Families Act

Learn about the rights of parents with mental illnesses, ways that professionals can support them, and efforts to expand their rights in this research brief. 

The Adoption and Safe Families Act is a federal law that requires social service agencies to “make reasonable efforts” so that children are not unnecessarily removed from their homes, and to support children who have been previously removed from their homes in reuniting with their families. Though the Adoption and Safe Families Act requires state social service agencies to ensure that children are kept with their parents in most circumstances, the law still allows for states some flexibility in determining reasonable causes for removing children from their parents’ homes. Read the brief | Plain-language version 

Disabled mother with child

Birth Outcomes among US Women with Intellectual and Developmental Disabilities

Mothers with intellectual and developmental disabilities face significant health disparities before, during, and after childbirth. Learn more about about the birth outcomes of women with IDD in this policy brief. 

According to a 2002 report from the US Surgeon General, people with intellectual and developmental disabilities (IDD) “face ever-growing challenges in finding and financing primary and specialty health care that responds both to the characteristics of [IDD] and to the distinctive health care needs of each stage of life." According to a study conducted at the Lurie Institute for Disability Policy, women with intellectual and developmental disabilities (IDD) in the United States are vulnerable to negative health outcomes owing to a combination of systemic and individual factors, including social, biological, and environmental factors. These adverse health outcomes include stillbirths, low birthweight, and preterm births. The study used data from the Health Care and Cost Utilization Project National Inpatient Sample (HCUP-NIS), a national database that contains information on roughly 8 million hospital stays a year from about 1,000 community hospitals in 46 states. Read the brief 

Creating the Capacity for Interventions for Parents with Mental Illness

This brief features information on creating and implementing interventions for parents with mental illness that encompass the entire family. 

There is a major gap in services for parents with mental illness within traditional mental health services, even though adults with mental illness are more likely to be parents than not. Service providers face several challenges to providing successful interventions for parents with mental illness. Traditional service models. Read the brief 

Health of Parents with and without Disabilities

This summary includes information on the overall health of parents with disabilities in the United States compared to parents without disabilities. 

Approximately 4.1 million parents (6.2%) in the United States have a disability. Understanding the relationship between parenting and disability will prove useful when shaping policy and research decisions. Read the brief | Plain-language version 

 

The Economic Status of Parents with Serious Mental Illness in the United States

This research brief contains information on the socioeconomic status of parents with mental illness in the United States. 

Like other parents with disabilities, parents whose mental illnesses convey the greatest likelihood of disability are more likely to be low-income than are parents without psychiatric disabilities. This lack of income increases their eligibility for government benefits like Supplemental Security Income (SSI), Social Security Disability Income (SSDI), Supplemental Nutrition Assistance Program (SNAP/food stamps), and Temporary Assistance for Needy Families (TANF). Read the brief 

Self-Advocacy Tips for Pregnant Women with Physical Disabilities

This guide for women with physical disabilities contains advice from other women on how to best prepare for pregnancy, childbirth and parenting. 

Since the Americans with Disabilities Act was passed more than 25 years ago, society has been fairer to people with disabilities than it was before. There are still struggles, though. Pregnant women with physical disabilities sometimes encounter negative attitudes, inaccessible doctors’ offices and hospitals, inaccessible transportation, and doctors who do not understand their disability. For many women, the attitudes people have are harder to deal with than physical barriers. Read the brief | Plain-language version 

 

Pregnancy among Women with Physical Disabilities: Unmet Needs and Recommendations on Navigating Pregnancy

In this brief, find out about the challenges women with physical disabilities face when seeking perinatal care, and the recommendations that women with physical disabilities have offered to other women to navigate pregnancy, childbirth and beyond. 

Though research suggests that women with physical disabilities are just as likely to be pregnant as women without disabilities, there isn’t as much information for women with physical disabilities about navigating pregnancy, childbirth, and motherhood. Women with physical disabilities may face unique challenges when it comes to pregnancy care. Read the brief | Plain-language version 

Facilitators and Barriers to Breastfeeding among Mothers with Physical Disabilities in the United States

This brief highlights the factors that contribute to breastfeeding rates and the implications for policy and practice.

The benefits of breastfeeding are well-established and an increasing number of mothers in the United States choose to breastfeed, at least short-term. Although a growing number of women with physical disabilities are becoming mothers, there is a dearth of information available about breastfeeding practices among these women. Read the brief | Plain-language version

Recommendations for Clinicians Working with Pregnant Women with Physical Disabilities

This brief provides a number of tips that medical practitioners can use when working with mothers with physical disabilities. 

Women with physical disabilities encounter significant barriers to accessing maternity care. These barriers include inaccessible health care settings, inaccessible transportation, and clinicians who may not understand the interactions between their disabilities and their pregnancy. Often, social and attitudinal barriers present more of a challenge than physical barriers. Read the brief 

 

 

Obstetric Clinicians’ Experiences and Educational Preparation for Caring for Pregnant Women with Physical Disabilities: A Qualitative Study

Learn how medical practitioners learned how to work with pregnant women with physical disabilities in this research summary. 

Though the Americans with Disabilities Act represents a significant step forward in advancing the rights of people with disabilities, women with disabilities face obstacles in receiving culturally sensitive health care. Research on the quality of health care for people with disabilities has found that pregnant women with physical disabilities often face negative attitudes and reactions from clinicians and staff as well as lack of provider knowledge about the interaction of pregnancy and disability.  Many women felt providers failed to consider the women’s own expertise about her disability. Read the brief 

 

National Research Center for Parents with Disabilities