The Heller School for Social Policy and Management
The Lurie Institute for Disability Policy

Policy Briefs

The Lurie Institute produces a wide variety of policy briefs and summaries that allow diverse audiences to learn about our research findings. Topics include the transition from youth to adult services among young adults with disabilities, health disparities, the intersections between gender and disability, sexual and reproductive health, community living, and parenting.

2022

2021

Plain Language Version

2020

  • Using Medicaid to Support Parents with Disabilities   (July, 2020, National Resource Center for Parents with Disabilitlies)
    Robyn Powell

    This brief proposes policy solutions for assisting parents with disabilities with childrearing tasks through existing Medicaid-funded services and supports.
  • Short-Term Money Follows the Person Extensions Resulted in a Significant Drop in State Efforts to Transition People Out of Institutions   (May 2020, Community Living Policy Center)
    H. Stephen Kaye and Joe Caldwell

    MFP was first authorized through the Deficit Reduction Act of 2005 with strong bipartisan support. The program was extended in the Affordable Care Act through September 2016, with flexibility to use funding through 2018. Since then, there have been five short-term extensions to keep the program afloat.
  • Unaffordable, Inadequate, and Dangerous: Housing Disparities for People with Disabilities in the U.S.   (April, 2020, Community Living Policy Center)
    Kartik Trivedi, Tatjana Meschede, and Finn Gardiner

    Housing security is vital for the health, wellbeing, and community integration of people with—and without—disabilities. Secure housing allows people to focus on strengthening their relationships, maintaining their health and recuperating from illness, and participating in the community, rather than focusing on mitigating the ill-effects that inadequate housing can exert on them. These include financial stress, disrupted routines, the risk of contracting new illnesses or exacerbating existing ones, and other stressors that can be reduced or eliminated by improving the quality of their housing. Unfortunately, people with disabilities are less likely to have secure housing than their nondisabled counterparts.
  • Understanding the Home and Community-Based Services COVID-19 Response Proposal (April, 2020, Community Living Policy Center)
    Joe Caldwell, Finn Gardiner, Anna Cass
    Millions of individuals with disabilities and older adults receive Medicaid Home and Community- Based services. Extensive waiting list also exist for Medicaid HCBS. Direct care workers and providers are providing essential services that allow individuals with disabilities and older adults to remain in their homes. Without these essential supports, individuals are at risk of being placed in institutional settings or hospitalized.

    Senator Bob Casey (D-PA) and Representative Debbie Dingell (D-MI) have introduced bills (S. 3544 and H.R. 6305) to increase funding for states’ home- and community-based services for people with disabilities and older adults during and after the COVID-19 pandemic.

 

2019

  • The Intersectionality Between Disability and Race: Health Needs Assessment in Connecticut, Massachusetts, and Rhode Island  (March, 2019, Community Living Policy Center)

    People with disabilities and racial, ethnic, and linguistic minorities traditionally are treated and understood as separate marginalized populations. However, disability occurs across all racial, ethnic, language and social groups, and people with disabilities who are also minorities often face multiple challenges within health systems. Therefore, understanding intersections of race and disability, and their impact on health and access to health care, is an important public health goal.

  • Adaptive Parenting Strategies Used by Mothers with Physical Disabilities Caring for Infants and Toddlers (National Research Center for Parents with Disabilities)
    Mothers with disabilities use a wide variety of adaptive strategies to make caring for their infants and toddlers easier, including home modifications, using or creating accessible baby-care equipment, accessing support and information, and getting support from other people. This brief, based on a qualitative study consisting of interviews with mothers with disabilities, summarizes some of these strategies.
  • Parents With and Without Disabilities: Demographics, Material Hardship, and Program Participation (National Research Center for Parents with Disabilities)
    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.
  • Behavioral and Cognitive Outcomes of Young Children in the United States Whose Mothers have Intellectual Disabilities (National Research Center for Parents with 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.
  • Postpartum Hospital Utilization among Massachusetts Women with Intellectual and Developmental Disabilities (National Research Center for Parents with 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.
  • Developing Peer Supports for Parents with Mental Illness (National Research Center for Parents with Disabilities)
    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.

2018

  • Advocacy and Support Tips for Parents on the Autism Spectrum (National Research Center for Parents with Disabilities)
    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.
  • Advice and Information for Professionals Working with Parents on the Autism Spectrum (National Research Center for Parents with Disabilities)
    Despite the deep-rooted 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.
  • Advice and Facts for Mothers and Expecting Mothers with Intellectual Disabilities (National Research Center for Parents with Disabilities)
    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.
  • Advice for Professionals Working with Parents with Intellectual Disabilities (National Research Center for Parents with Disabilities)
    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 U.S. government agencies have found that parents with intellectual disabilities face stereotyping, stigma, unequal health outcomes, poverty, and other adverse factors.
  • Parents with Mental Illnesses and the Adoption and Safe Families Act (National Research Center for Parents with Disabilities)
    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.
  • Birth Outcomes among U.S. Women with Intellectual and Developmental Disabilities (National Research Center for Parents with Disabilities)
    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.
  • Pregnancy among Women with Physical Disabilities: Unmet Needs and Recommendations on Navigating Pregnancy (National Research Center for Parents with Disabilities)
    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.
  • Facilitators and Barriers to Breastfeeding among Mothers with Physical Disabilities in the United States (National Research Center for Parents with Disabilities
    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.
  • Recommendations for Clinicians Working with Pregnant Women with Physical Disabilities (National Research Center for Parents with 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.

2017

  • The Economic Status of Parents with Serious 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).
  • Health of Parents with and 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.
  • Creating the Capacity for Interventions for Parents with Mental Illness
    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. 

Prior to 2017