Supporting Families

Parents, siblings, and other relatives are often the most enduring and important source of support for individuals with intellectual and developmental disabilities. My work in this area focuses on understanding the expectations, experiences, relationships, services, and supports that will enable these families to thrive.

Research studies

  • Carter, E. W., Lanchak, E. R., & McMillan, E. D. (in press). “Too many brick walls”: Perspectives on accessing disability information and resources among service providers. Inclusion.

  • Carter, E. W., Carlton, M. B., & Travers, H. (2020). Seeing strengths: Young adults and their siblings with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 33, 574-583. https://doi.org/10.1111/jar.12701

  • Travers, H., Carlton, M. B., & Carter, E. W. (2020). Social connections among siblings with and without intellectual disability or autism. Intellectual and Developmental Disabilities, , 58(1), 19-33. https://doi.org/10.1352/1934-9556-58.1.19

  • Boehm, T. L., & Carter, E. W. (2019). Family quality of life and its correlates among parents of children and adults with intellectual disability. American Journal on Intellectual and Developmental Disabilities, 124, 99--115. https://doi.org/10.1352/1944-7558-124.2.99

  • Carter, E. W., Bendetson, S., & Guiden, C. H. (2018). Family perspectives on the appeals of and alternatives to sheltered employment for individuals with severe disabilities. Research and Practice for Persons with Severe Disabilities, 43, 145-164.https://doi.org/10.1177/1540796918778293

  • Gilson, C. B., Carter, E. W., Bumble, J., & McMillan, E. (2018). Family perspectives on integrated employment for adults with intellectual and developmental disabilities. Research and Practice for Persons with Severe Disabilities, 3, 20-37. https://doi.org/10.1177/1540796917751134  

  • Gilson, C. B., Bethune, L., Carter, E. W., & McMillan, E. (2017). Informing and equipping parents of people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 55, 347-360. https://doi.org/10.1352/1934-9556-55.5.347

  • Boehm, T. L., & Carter, E. W. (2016). Systematic review of informal relationships among parents of individuals with intellectual disability or autism. Research and Practice for Persons with Severe Disabilities, 41, 173-190. https://doi.org/10.1177/1540796916657339

  • Blustein, C. L., Carter, E. W., & McMillan, E. (2016). The voices of parents: Post–high school expectations, priorities, and concerns for children with intellectual and developmental disabilities. The Journal of Special Education, 50, 164-177. https://doi.org/10.1177/0022466916641381

  • Carter, E. W., Biggs, E. E., & Boehm, T. L. (2016). Being present versus having a presence: Dimensions of belonging for young people with disabilities and their families. Christian Education Journal, 13, 127-146. https://doi.org/10.1177/073989131601300109  

  • Carter, E. W., Boehm, T. L., Annandale, N. H., & Taylor, C. (2016). Supporting congregational inclusion for children and youth with disabilities and their families. Exceptional Children, 82, 372-389. https://doi.org/10.1177/0014402915598773

  • Boehm, T. L., Carter, E. W., & Taylor, J. L. (2015). Factors associated with family quality of life during the transition to adulthood for youth and young adults with developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 120, 395-411. https://doi.org/10.1352/1944-7558-120.5.395  

  • Carter, E. W., Lane, K. L., Cooney, M., Weir, K., Moss, C. K., & Machalicek, W. (2013). Parent assessments of self-determination importance and performance for students with autism or intellectual disability. American Journal on Intellectual and Developmental Disabilities, 88, 16-31. https://doi.org/10.1352/1944-7558-118.1.16

  • Carter, E. W., Swedeen, B., Cooney, M., Walter, M. J., & Moss, C. K. (2012). “I don’t have to do this by myself?”: Parent-led community conversations to promote inclusion. Research and Practice for Persons with Severe Disabilities, 37, 9-23. https://doi.org/10.2511/027494812800903184

  • Chambers, C. R., & Hughes, C., & Carter, E. W. (2004). Parent and sibling perspectives on the transition to adulthood. Education and Training in Developmental Disabilities, 39, 79-94.

other publications

  • Carter, E. W. (2015). What matters most: Research on elevating parent expectations. Boston, MA: Institute for Community Inclusion. 

  • Carter, E. W. (2015). Helping families flourish in faith and life (foreword). In L. Bradley, Special needs parenting: From coping to thriving. Edina, MN: Huff Publishing. 

  • Carter, E. W., Weir, K., Cooney, M., Walter, M. J., & Moss, C. K. (2012). Fostering self-determination among children and youth with disabilities: Lessons from parents. Exceptional Parent, 42(3), 13-17. 

  • Weir, K., Cooney, M., Walter, M., Moss, C., & Carter, E. W. (2011). Fostering self-determination among children with disabilities: Ideas from parents for parents. Madison, WI: Natural Supports Project, Waisman Center, University of Wisconsin-Madison. 

  • Carter, E. W., Swedeen, B., & Moss, C. K. (2009). Supporting extracurricular involvement for youth with disabilities. Exceptional Parent, 39(9), 32-33.