In this introduction to the special issue, we discuss the need for research about services and supports for older adults with severe disabilities and their families. We then highlight three considerations in conducting research with older adults with severe disabilities and their families. We conclude with short descriptions of each article in this special issue.
AndersonR. J.BlochS.ArmstrongM.StoneP. C.LowJ. T. (2019). Communication between healthcare professionals and relatives of patients approaching the end-of-life: A systematic review of qualitative evidence. Palliative Medicine, 33, 926-941. doi:10.1177/0269216319852007
2.
BeyerS.BrownT.AkandiR.RapleyM. (2010). A comparison of quality of life outcomes for people with intellectual disabilities in supported employment, day services, and employment enterprises. Journal of Applied Research in Intellectual Disabilities, 23, 290-295. doi:10.1111/j.1468-3148.2009.00534.x
3.
BittlesA. H.PettersonB. A.SullivanS. G.HussainR.GlassonE. J.MontgomeryP. D. (2002). The influence of intellectual disability on life expectancy. Journal of Gerontology, Series A: Biological Sciences & Medical Services, 57, M470-M472. doi:10.1093/Gerona/57.7.M470
4.
BraddockD. L.HempR. E.TanisE. S.WuJ.HafferL. (2017). The state of the states in intellectual and developmental disabilities. Washington, DC: American Association on Intellectual and Developmental Disabilities.
BurkeM. M.FishT.LawtonK. (2015). A comparative analysis of adult siblings’ perceptions toward caregiving. Intellectual and Developmental Disabilities, 53, 143-157. doi:10.1352/1934-9556-53.2.143
7.
BurkeM. M.LeeC.HallS.RossettiZ. (2019). Understanding decision-making among individuals with intellectual and developmental disabilities (IDD) and their siblings. Intellectual and Developmental Disabilities, 57, 26-41. doi:10.1352/1934-9556-57.1.26
8.
ChadseyJ.BeyerS. (2001). Social relationships in the workplace. Mental Retardation and Developmental Disabilities Research Review, 7, 128-133. doi:10.1002/mrdd.1018
9.
HellerT.CaldwellJ. (2006). Supporting aging caregivers and adults with developmental disabilities in future planning. Mental Retardation, 44, 189-202. doi:10.1352/0047-0675
10.
HewittA.AgostaJ.HellerT.WilliamsA. C.ReinkeJ. (2013). Families of individuals with intellectual and developmental disabilities: Policy, funding, services, and experiences. Intellectual and Developmental Disabilities, 51, 349-359. doi:10.1352/1934-9556-51.5.349
11.
KimK.TurnbullA. (2004). Transition to adulthood for students with severe intellectual disabilities: Shifting toward person-family interdependent planning. Research and Practice for Persons with Severe Disabilities, 29, 53-57.
12.
LarsonS. A.EschenbacherH. J.AndersonL. L.TaylorB.PettingellS.HewittA.. . . BourneM. L. (2017). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends 2015. Minneapolis: Institute on Community Integration, Research and Training Center on Community Living, University of Minnesota. Retrieved from http://www.advancingstates.org/sites/nasuad/files/2015_RISP-WEB.pdf
13.
LinJ.LinL.HsuS. (2016). Aging people with intellectual disabilities: Current challenges and effective interventions. Review Journal of Autism and Developmental Disorders, 3, 266-272. doi:10.1007/s40489-016-0082-0
14.
ReynoldsM. C.PalmerS. B.GottoG. S. (2018). Reconceptualizing natural supports for people with disabilities and their families. International Review of Research in Developmental Disabilities, 54, 177-209. doi:10.1016/bs.irrdd.2018.07.006
15.
RossettiZ.HallS. (2015). Adult sibling relationships with brothers and sisters with severe disabilities. Research and Practice for Persons with Severe Disabilities, 40, 120-137. doi:10.1177/1540796915592829
16.
SandersonK. A.BurkeM. M.UrbanoR. C.ArnoldC. K.HodappR. M. (2019). Getting by with a little help from my friends: Siblings report on the amount of informal support received by adults with disabilities. Journal of Intellectual Disability Research, 63, 1097-1110. doi:10.1111/jir/12622
17.
SchalockR. L.GardnerG. F.BradleyV. J. (2007). Quality outcomes for people with intellectual and other developmental disabilities: Applications across individuals, organizations, communities, and systems. Washington, DC: American Association on Intellectual and Developmental Disabilities.
18.
SwensonS. (2005). Families, research, and systems change. Mental Retardation, 43, 365-368.
19.
TurnbullA.BrownI.TurnbullH. R. (2004). Family quality of life and people with mental retardation: International perspectives. Washington, DC: American Association on Mental Retardation.
20.
VosP.De CockP.PetryK.Van Den NoortgateW.MaesB. (2010). What makes them feel like they do? Investigating the subjective well-being in people with severe and profound disabilities. Research in Developmental Disabilities, 31, 1623-1632. doi:10.1016/j.ridd.2010.04.021
