The Lurie Institute for Disability Policy

Publications

Researchers at the Lurie Institute have published numerous articles on the needs, outcomes, and experiences of people with disabilities, their families, and professionals who work with them. These papers, which cover topics as varied as hospitalization outcomes among people with intellectual and developmental disabilities to material hardships affecting people with disabilities, draw from multiple disciplines and are rooted in an ethos that places the well-being and integration of people with disabilities in the wider community at the forefront. 


You may search our articles, briefs, and webinars using the search tool below.

Or, if you prefer, you may browse our annual compilation of published work by expanding the section for each year.

2022

  • Powell, R. M. (2022). Achieving justice for disabled parents and their children: An abolitionist approach. Yale Journal of Law & Feminism, 33(2), 35–109. https://dx.doi.org/10.2139/ssrn.3916265
  • Andrews, E. E., Powell, R. M., & Ayers, K. (2022). The evolution of disability language: Choosing terms to describe disability. Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2022.101328.
  • Powell, R. M., Parish, S. L., Mitra, M., Waterstone, M., & Fournier, S. (2022). Child welfare system inequities experienced by disabled parents: towards a conceptual framework. Disability & Society. https://doi.org/10.1080/09687599.2022.2071675
  • Meschede, T., Trivedi, K., & Caldwell, J. (2022). Severe housing and neighborhood inequities of households with disabled members and households in need of long-term services and supports. Housing & Society. https://doi.org/10.1080/08882746.2022.2065614
  • Caldwell, J., Heyman, M., Atkins, M., & Ho, S. (2022). Experiences of individuals self-directing Medicaid home and community-based services during COVID-19. Disability & Health Journal. https://doi.org/10.1016/j.dhjo.2022.101313
  • Dembo, R. S., Huntington, N., Mitra, M., Rudolph, A. E., Lachman, M. E., & Mailick, M. R. (2022). Social network typology and health among parents of children with developmental disabilities: Results from a national study of midlife adults. Social Science & Medicine, 292. https://doi.org/10.1016/j.socscimed.2021.114623
  • Ledingham, E., Wright, G. W., & Mitra, M. (2022). Sexual violence against women with disabilities: Experiences with force and lifetime risk. American Journal of Preventive Medicine. https://www.sciencedirect.com/science/article/pii/S0749379722000496

2021

  • Brown, H. K. & Mitra, M. (2021). Improved obstetric care for people with disabilities: An urgent call for accessibility and inclusion. Journal of Women's Health. https://doi.org/10.1089/jwh.2021.0510
  • Gardiner, F. (2021). Housing Problems for Disabled People. Easy read brief from the Community Living Policy Center. https://heller.brandeis.edu/community-living-policy/images/pdfpublications/2021-housing-easyread-brief.pdf
  • Nicholson, J., English, K., & Heyman, M. (2021). The ParentingWell Learning Collaborative Feasibility Study: Training Adult Mental Health Service Practitioners in a Family-Focused Practice Approach. Community Mental Health Journal, 4, 1-16. DOI: 10.1007/s10597-021-00818-5
  • Powell, R. M., & Nicholson, J. (2021). Addressing Risk Factors Among Parents With Serious Mental Illness: Commentary on Ostrow et al. Psychiatric Services, 72(4), 466–467. https://doi.org/10.1176/appi.ps.202000790

2020

  • Mitra, M., McKee, M.M., Akobirshoev, I., Valentine, A., Ritter, G., Zhang, J., McKee K., Iezzoni, L.I. (2020). Pregnancy, Birth, and Infant Outcomes among Women who are Deaf or Hard of Hearing. Am J Prev Med, 2020 Jan 15. pii: S0749-3797(19)30477-5. doi: 10.1016/j.amepre.2019.10.012.
  • Powell, R.M., Parish, S.L., Mitra, M., & Nicholson, J. (2020). Responding to the legal needs of parents with psychiatric disabilities. Law and Equality, 38(1), 69-114.
  • Powell, R.M., Mitra, M., Nicholson, J., & Parish, S.L. (2020). Perceived community-based needs of low-income parents with psychiatric disabilities who experienced legal challenges to their parenting rights. Children and Youth Services Review, [DOI: 10.1016/j.childyouth.2020.104902]
  • Albert, S. & Powell, R.M. (2020) Supporting disabled parents and their families: perspectives and recommendations from parents, attorneys, and child welfare professionals, Journal of Public Child Welfare, DOI: 10.1080/15548732.2020.1751771
  • Powell, R.M., Parish, S., Mitra, M., Waterstone, M.E. & Fournier, S., Terminating The Parental Rights Of Mothers With Disabilities: An Empirical Legal Analysis (April 7, 2020). Missouri Law Review, Available at SSRN: https://ssrn.com/abstract=3570938
  • Powell, R., Parish, S., Mitra, M., Waterstone, M. E. & Fournier, S. (2020) The Americans with Disabilities Act and Termination of Parental Rights Cases: An Examination of Appellate Decisions Involving Mothers with Disabilities. Yale Law & Policy Review, Available at SSRN: https://ssrn.com/abstract=3571729
  • Akobirshoev, I. , Mitra, M. , Parish, S., Valentine, A. & Moore Simas, T. (2020) Racial and Ethnic Disparities in Birth Outcomes and Labor and Delivery Charges Among Massachusetts Women With Intellectual and Developmental Disabilities. Intellectual and Developmental Disabilities, Apr 2020, Vol.58(2), pp.126-138
  • Trotter Davis, M., Warfield, M.E., Boguslaw,J., Roundtree-Swain, D., & Kellogg, G. (2020) Parenting a 6 year old is not what I planned in retirement:Trauma and Stress Among Grandparents due to the Opioid Crisis, Journal of Gerontological Social Work, DOI: 10.1080/01634372.2020.1752872
  • Clements, K. M., Mitra, M., Zhang, J., Parish, S.L. (2020) Postpartum Health Care Among Women With Intellectual and Developmental Disabilities. American Journal of Preventive Medicine, https://doi.org/10.1016/j.amepre.2020.03.011
  • Horner-Johnson W., Akobirshoev I., Amutah-Onukagha N.N., Slaughter-Acey J.C., Mitra M. (2020) Preconception Health Risks Among U.S. Women: Disparities at the Intersection of Disability and Race or Ethnicity. Womens Health Issues, 2020 Nov 21:S1049-3867(20)30105-5. doi: 10.1016/j.whi.2020.10.001. Epub ahead of print. PMID: 33234388.
  • Andrews, E.E., Powell, R.M., Ayers, K.B. (2020). Experiences of Breastfeeding among Disabled Women. Womens Health Issues, Jan-Feb 2021;31(1):82-89. doi: 10.1016/j.whi.2020.09.001. Epub 2020 Oct 10
  • Akobirshoev, I. Mitra. M., Li, S.F., Dembo, R., Dooley, D., Mehta, A., Batra, N. (2020). The Compounding Effect of Race/Ethnicity and Disability Status on Children’s Health and Health Care by Geography in the United States. Medical Care, 2020 Dec;58(12):1059-1068. doi: 10.1097/MLR.0000000000001428
  • Namkung, E. H., Valentine, A., Warner, L., & Mitra, M. (2020). Contraceptive use at first sexual intercourse among adolescent and young adult women with disabilities: The role of formal sex education. Contraception, 103(3), 178–184.
  • Powell, R. & Albert, S. (2020). Barriers and Facilitators to Compliance with the Americans with Disabilities Act by the Child Welfare System: Insights from Interviews with Disabled Parents, Child Welfare Workers, and Attorneys. Stanford Law & Policy Review, 32, 119–178. Available at: https://ssrn.com/abstract=3679229

2019

  • Akobirshoev, I., Mitra, M., Dembo, R., & Lauer, E. (2019). In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data. Autism. doi: 10.1177/1362361319855795
  • Akobirshoev, I., Mitra, M., Parish, S.L., Valentine, A., Moore Simas, T. (in press). Racial and ethnic disparities in birth outcomes and labor and delivery charges among Massachusetts mothers with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities.
  • Dembo, R. S., Mitra, M., Akobirshoev, I., & Manning, S. E. (2019). Symptom sequelae following violence against youth with disabilities. Journal of Interpersonal Violence. doi: 10.1177/0886260519889928
  • Mitra, M., Akobirshoev, I., Parish, S.L., Valentine, A., Clements, K., & Moore Simas, T. (2019). Postpartum emergency department use among women with intellectual and developmental disabilities: A retrospective cohort study. Journal of Epidemiology and Community Health, 73(6), 557-563. doi: 10.1136/jech-2018-211589
  • Moring, N. S., Parish, S. L., Mitra, M., & Alterio, N. (2019). After disclosure: A research protocol to respond to sexual assault and abuse disclosures in research with adults with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. doi: 10.1111/jppi.12292
  • Namkung, E.H., Mitra, M., & Nicholson, J. (2019). Do disability, parenthood, and gender matter for health disparities?: A U.S. population-based study. Disability and Health Journal.
  • Nicholson, J., & Valentine, A. (2019). Key informants specify core elements of peer supports for parents with serious mental illness. Frontiers in Psychiatry, 10. doi: 10.3389/fpsyt.2019.00106
  • Powell, R.M. (2019). Family law, parents with disabilities, and the Americans with Disabilities Act. Family Court Review, 57(1), 37-53. doi:10.1111/fcre.12396.
  • Powell, R.M. & Nicholson, J. (2019). Disparities in child protective services: Commentary on Kaplan et al. (2019). Psychiatric Services, 70(3), 209-210. doi: 10.1176/appi.ps.201900027.
  • Shields, M.C., Akobirshoev, I., Mitra, M., Dembo, R. (2019). Self-injurious behavior among adults with ASD: Hospitalizations, length of stay, and costs of resources to deliver care. Psychiatric Services. doi: 10.1176/appi.ps.201800318
  • Sonik, R.A., Parish, S. L. & Mitra, M. (2019) Association of health status with receipt of supplemental security income among individuals with severe disabilities and very low income and assets. JAMA Internal Medicine. doi: 10.1001/jamainternmed.2018.8609
  • Sonik, R.A., Parish, S. L. & Mitra, M. (2019) Food insecurity patterns before and after initial receipt of Supplemental Security Income. Public Health Nutrition, 22(10), 1909-1913. doi: 10.1017/S1368980019000570
  • Valentine, A., Akobirshoev, I., & Mitra, M. (2019). Intimate partner violence among women with disabilities in Uganda. International Journal of Environmental Research and Public Health, 16(6). doi: 10.3390/ijerph16060947

2018

  • Akobirshoev, I., Mitra, M., Parish, S., Moore Simas, T.A., Dembo, R., & Ncube, C. N. (2018). Racial and ethnic disparities in birth outcomes and labour- and delivery-related charges among women with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 63(4), 313-326. doi: 10.1111/jir.12577
  • Clements, K.C., Mitra, M., Zhang, J., & Iezzoni, L.I. (2018). Antenatal hospital utilization among women at risk for disability. Journal of Women's Health, 27(8),1026-1034. doi: 10.1089/jwh.2017.6543
  • Crossman, M.K., Parish, S., Hauser-Cram, P., & Warfield, M.E. (2018). The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities. Research in Developmental Disabilities, 81,122-133. doi: 10.1016/j.ridd.2018.04.025
  • Crossman, M.K., Warfield, M.E., Kotelchuck, M., Hauser-Cram, P., & Parish, S. (2018). Associations between early intervention home visits, family relationships and competence for mothers of children with developmental disabilities. Maternal and Child Health Journal, 22(4), 599-607. doi: 10.1007/10995-018-2429-x
  • Dembo, R. S., Mitra, M., & McKee, M. (2018). The psychological consequences of violence against people with disabilities. Disability and Health Journal, 11(3), 390-397. doi: 10.1016/j.dhjo.2018.01.006
  • Eagan, T.J., Teshale, S., Herrera-Venson, A.P., Ordway, A., & Caldwell, J. (2018). Participation in two evidence-based falls prevention programs by adults aging with a long-term disability: Case-control study of reach and effectiveness. Journal of Aging and Health. doi: 10.1177/0898264318808918
  • Floyd, F.J., Mailick, M.R., Greenberg, J.S., Namkung, E.H., & Song, J. (2018). Families at midlife. APA Handbook of Contemporary Family Psychology, 1, 611-629. Retrieved from: https://psycnet.apa.org/buy/2018-59956-034
  • Li, H., Mitra, M., Wu, J. P., Parish, S.L., Valentine, A., & Dembo, R.S. (2018). Female sterilization and cognitive disability in the United States, 2011–2015. Obstetrics & Gynecology, 132(3), 559-564. doi: 10.1097/AOG.0000000000002778
  • Mitra, M., Akobirshoev, I., Clements, K., Parish, S. L., & Zhang, J. (2018). Antenatal hospitalization among U.S. women with intellectual and developmental disabilities: A retrospective cohort study. American Journal on Intellectual and Developmental Disabilities Research, 123(5), 399-411. doi: 10.1352/1944-7558-123.5.399
  • Mitra, M., Akobirshoev, I., Rosenthal, E. & Moore-Simas, T.A. (2018). Postpartum hospital utilization among Massachusetts women with intellectual and developmental disabilities: A retrospective cohort study. Maternal and Child Health, 22, 1492. doi: 10.1007/10995-018-2546-6
  • Mitra, M., Long-Bellil, L., & Powell, R. M. (2018). Public health ethics relating to persons with disability. In J. Kahn, N. Kass & A. Mastroianni (Eds.). Oxford Handbook of Public Health Ethics. doi: 10.1093/oxfordhb/9780190245191.013.20
  • Mitra, M., Parish, S. L., Akobirshoev, I., Rosenthal, E. & Moore Simas, T. A. (2018). Postpartum Hospital Utilization among Massachusetts Women with Intellectual and Developmental Disabilities: A Retrospective Cohort Study. Maternal and Child Health, 22(10), 1492-1501. doi: 10.1007/10995-018-2546-6
  • Namkung, E.H., Greenberg, J.S., Mailick M.R., & Floyd , F.J. (2018). Lifelong parenting of adults with developmental disabilities: Growth trends over 20 years in midlife and later life. American Journal on Intellectual and Developmental Disabilities, 123(3), 228-240. doi: 10.1352/1944-7558-123.3.228
  • Nicholson, J., & Valentine, A. (2018). Defining "Peerness": Developing peer supports for parents with mental illnesses. Psychiatric Rehabilitation Journal, 41(2), 157-159. doi: 10.1037/prj0000301
  • Parish, S.L., Son, E., Powell, R.M., & Igdalsky, L. (2018). Reproductive cancer treatment hospitalizations of U.S. women with intellectual and developmental disabilities. Intellectual & Developmental Disabilities, 56(1), 1-12. doi: 10.1352/1934-9556-56.1.1
  • Powell, R.M., Mitra, M., Smeltzer, S.C., Long-Bellil, L.M., Smith L.D., Rosenthal, E., & Iezzoni, L. (2018). Adaptive parenting strategies used by mothers with physical disabilities caring for infants and toddlers. Health and Social Care in the Community. doi: 10.1111/hsc.12706
  • Powell, R.M., Mitra, M., Smeltzer, S.C., Long-Bellil, L. M., Smith, L. D., & Rosenthal, E. S. (2018). Breastfeeding among women with physical disabilities in the United States. Journal of Human Lactation, 34(2), 253-261. doi: 10.1177/0890334417739836
  • Sannicandro, T., Parish, S.L., Fournier, S., Mitra, M., & Paiewonsky, M. (2018). Employment, income, and SSI effects of postsecondary education for people with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 123(5), 412-425. doi: 10.1352/1944-7558-123.5.412
  • Shields, M. C., Reneau, H., Albert, S., Siegel, L., & Trinh, N. (2018). Harms within inpatient psychiatric facilities in the United States: An analysis of news articles. Issues in Mental Health Nursing, 39(9), 757-763. doi: 10.1080/01612840.2018.1451579
  • Smeltzer, S.C., Mitra, M., Long-Bellil, L. M., Iezzoni L.I., & Smith, L.D. (2018). Obstetric clinicians' experiences and educational preparation for caring for pregnant women with physical disabilities: A qualitative study. Disability and Health Journal, 11(1), 8-13. doi: 10.1016/j.dhjo.2017.07.004
  • Sonik, R.A., Parish, S.L., Mitra, M., & Nicholson, J. (2018). Parents with and without disabilities: Demographics, material hardship, and program participation. Review of Disability Studies, 14(4). Retrieved from: https://rdsjournal.org/index.php/journal/article/view/822
  • Sonik, R.A, Parish, S. L., Mitra, M. (2018). Inpatient Medicaid utilization and expenditure patterns after changes in Supplemental Nutrition Assistance Program benefit levels. Preventing Chronic Disease, 15. Retrieved from: https://www.cdc.gov/pcd/issues/2018/18_0185.htm
  • Warfield, M.E., Adams, R.S., Ritter, G., Valentine, A., Williams, T.V., & Larson, M.J. (2018). Health care utilization among children with special health care needs in military families. Disability and Health Journal, 11(4), 624-63. doi: 10.1016/j.dhjo.2018.06.002
  • Woodman, A.C., Demers, L.B., Crossman, M.K., Warfield, M.E., & Hauser-Cram, P. (2018). The influence of Part C early intervention dosage levels on growth in adaptive skills through adolescence. Early Childhood Research Quarterly, 43(2), 73-82. doi: 10.1016/j.ecresq.2018.01.007
  • Wu, J.P., Zhang, J., Mitra, M., Parish, S.L., & Reddy, G.K. (2018). Provision of moderately and highly effective reversible contraception to women with intellectual and developmental disabilities: Evidence from the Massachusetts All-Payer Claims Database. Obstetrics & Gynecology, 132(3), 565-574. doi: 10.1097/AOG.0000000000002777

2017 and Prior Years

  • Mitra, M., Parish, S. L., Akobirshoev, I., & Moore-Simas, T. A. (2017). Postnatal hospital utilization among U.S. women with intellectual and developmental disabilities [10N]. Obstetrics & Gynecology, 129(5). doi: 10.1097/01.AOG.0000514720.96759.d1
  • Mitra, M., Smith, L. D., Smeltzer, S. C., Long-Bellil, L. M., Moring, N. S., & Iezzoni, L. I. (2017). Barriers to providing maternity care to women with physical disabilities: Perspectives from health care practitioners. Disability and Health Journal, 10(3), 445-450. doi: 10.1016/j.dhjo.2016.12.021
  • Powell, R. M. (2017). Safeguarding the rights of parents with intellectual disabilities in child welfare cases: The convergence of social science and law. CUNY Law Review, 20(1), 127-149. Retrieved from: https://academicworks.cuny.edu/cgi/viewcontent.cgi?article=1415&context=clr
  • Powell, R. M., Mitra, M., Long-Bellil, L. M., Smeltzer, S. C., Smith, L. D., & Iezzoni, L. I. (2017). Family attitudes and reactions towards pregnancy among women with physical disabilities. Women's Health Issues, 27(3), 345-350. doi: 10.1016/j.whi.2017.01.003
  • Powell, R. M., Mitra, M., Smeltzer, S. C., Long-Bellil, L. M., Smith, L. D., & Rosenthal, E. S. (2017). Breastfeeding among women with physical disabilities in the United States. Journal of Human Lactation, 34(2), 253-261. doi: 10.1177/0890334417739836
  • Powell, R. M. & Parish, S. L. (2017). Behavioral and cognitive outcomes in young children of mothers with intellectual impairments. Journal of Intellectual Disability Research, 61(1), 50-61. doi: 10.1111/jir.12308
  • Powell, R. M., Parish, S. L., & Akobirshoev, I. (2017). The health and economic wellbeing of U.S. mothers with intellectual impairments. Journal of Applied Research in Intellectual Disabilities, 30(3), 456-468. doi: 10.1111/jar.12308
  • Sannicandro, T., Parish, S. L., Son, E., & Powell, R. M. (2017). Health care changes for children with special health care needs, 2005-2011. Maternal and Child Health Journal, 21(3), 524-530. doi: 10.1007/s10995-016-2136-4
  • Smeltzer, S. C., Mitra, M., Long-Bellil, L. M., Iezzoni, L. I., & Smith, L. D. (2017). Obstetric clinicians' experiences and educational preparation for caring for pregnant women with physical disabilities: A qualitative study. Disability and Health Journal, 11(1), 8-13. doi: 10.1016/j.dhjo.2017.07.004
  • Sonik, R. A., Parish, S. L., Akobirshoev, I., Son, E., & Rosenthal, E. S. (2017). Population estimates, health care characteristics, and material hardship experiences of U.S. children with parent-reported speech-language difficulties: Evidence from three nationally representative surveys. Language Speech and Hearing Services in Schools, 48(4), 286-293. doi: 10.1044/2017_LSHSS-16-0072