This study used qualitative research methodology to investigate parent and sibling perspectives on the educational and community inclusion of school aged students with moderate or severe disabilities. Interviews with parents from twenty-one families identified the type and extent of inclusive educational and community settings in which the student and his or her parents and siblings were involved. Eight of these target siblings were also interviewed to provide insight from the sibling's perspective on the experience of inclusion. Mothers in this study reported involvement in an average of almost 4 community activities, with fathers averaging 3 activities, siblings averaging 1.33 activities each, and the student with disabilities usually engaged in only one activity outside of school. Themes that emerged included: 1) the parents' and siblings' belief that the child with a disability is capable and can function and achieve in the real world; 2) the parents' and siblings' desire to have the child with a disability around typical children as much as possible in order to serve as models of skill and behavior; 3) the parents' view that regular education teachers are unwilling or untrained (or both) to accommodate children with disabilities in optimal ways; 4) the parents' and siblings' general satisfaction with the amount and type of inclusion both at school and in the community; and 5) parents' and siblings' view that the student with disabilities definitely models and wants to emulate the typical sibling. It is striking that siblings' perceptions tended to mirror those of the parents. Also of note, is the general lack of knowledge and involvement on the siblings' part regarding school inclusion. The findings add to the growing literature on inclusion of students with disabilities in educational and community settings by focusing on activities of key family members including parents and siblings.
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References
1.
AbramovitchR., CorterC., & LandoB. (1979). Sibling interaction in the home. Child Development, 50, 997–1003.
2.
AbramovitchR., CorterC., & PeplerD. J. (1980). Observations of mixed sex sibling dyads. Child Development, 51, 1268–1271.
3.
AbramovitchR., CorterC., PeplerD. J., & StanhopeL. (1986). Sibling and peer interaction: A final follow-up and comparison. Child Development, 57, 217–229.
4.
AbramovitchR., StanhopeL, PeplerD., & CorterC. (1987). The influence of Down's Syndrome on sibling interaction. Journal of Child Psychology and Psychiatry, 28, 865–879.
5.
BennettT., LeeH., & LuekeB. (1998). Expectations and concerns: What mothers and fathers say about inclusion. Education and Training in Mental Retardation and Developmental Disabilities, 33, 108–122.
6.
BogdanR. C., & BiklenS. K. (1982). Qualitative research for education: An introduction to theory and methods. Boston: Allyn and Bacon.
7.
BrodyG. H., StonemanZ., & BurkeM. (1988). Child temperament and parental perceptions of individual child adjustment: An intrafamilial analysis. American Journal of Orthopsychiatry, 58, 532–542.
8.
BrothersonM. J. (1994). Interactive focus group interviewing. A qualitative research method in early intervention. Topics in Early Childhood Special Education, 14, 101–118.
9.
BrothersonM. J., & GoldsteinB. L. (1992). Quality design of focus groups in early childhood special education research. Journal of Early Intervention, 16, 334–342.
10.
BrownL., SchwarzP., Udarvi-SolnerA., Fratura KampschroerE., JohnsonF., JorgensenJ., & GruenewaldL. (1991). How much time should students with severe intellectual disabilities spend in regular education classrooms and elsewhere?Journal of the Association for Persons with Severe Handicaps, 16, 39–47.
11.
BuhrmesterD., & FurmanW. (1990). Perceptions of sibling relationships during middle childhood and adolescence. Child Development, 61, 1387–1398.
12.
CaldwellB. M., & GuzeS. B. (1960). A study of the adjustment of parents and siblings of institutionalized and noninstitutionalized retarded children. American Journal of Mental Deficiency, 64, 845–861.
13.
CicirelliV. G. (1982). Sibling influence throughout the lifespan. In LambM. E. & Sutton-SmithB. (Eds.), Sibling Relationships (pp. 267–284). Hillsdale, NJ: Lawrence Erlbaum Associates.
14.
CrnicK. A., & LeconteJ. M. (1986). Understanding sibling needs and influences. In FewellR. R. & VadasyP. F. (Eds.), Families of handicapped children: Needs and supports across the lifespan (pp. 75–98). Austin, TX: Pro-Ed.
15.
DallasE., StevensonJ., & McGurkH. (1993). Cerebral-palsied children's interactions with siblings-I. Influence of severity of disability, age, and birth order. Journal of Child Psychology and Psychiatry, 34, 621–647.
16.
DunnJ., StockerC., & PlominR. (1990). Nonshared experiences within the family: Correlates of behavioral problems in middle childhood. Development and Psychopathology, 2, 113–126.
17.
ErwinE. J., & SoodakL. C. (1995). I never knew I could stand up to the system: Families' perspectives on pursuing inclusive education. Journal of the Association for Persons with Severe Handicaps, 20, 136–146.
18.
FarberB. (1960). Effects of a severely mentally retarded child on family integration. Monographs of the Society for Research in Child Development, 21 (Serial No. 75).
19.
FurmanW., & BuhrmesterD. (1985). Childrens' perceptions of the qualities of sibling relationships. Child Development, 56, 448–461.
20.
GrossmanF. K. (1972). Brothers and sisters of retarded children: An exploratory study. Syracuse, NY: Syracuse University Press.
21.
HannahM. E., & MidlarskyE. (1985). Siblings of the handicapped: A literature review for school psychologists. School Psychology Review, 14, 510–520.
22.
JohnsonL. J., & LaMontagneM. J. (1993). Research methods: using content analysis to examine the verbal or written communication of stakeholders within early intervention. Journal of Early Intervention, 17, 73–79.
23.
KruegerR. A. (1994). Focus groups: A practical guide for applied research. London: Sage.
24.
LobatoD. (1983). Siblings of handicapped children: A review. Journal of Autism and Developmental Disorders, 13, 347–364.
25.
LobatoD. J. (1990). Brothers, sisters and special needs: Information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore: Paul H. Brookes.
26.
LobatoD. J., MillerC. T., BarbourL., HallL. J., & PezzulloJ. (1991). Preschool siblings of handicapped children: Interactions with mothers, brothers, and sisters. Research in Developmental Disabilities, 12, 387–399.
27.
MarchantC. (1995). Teachers' views of integrated preschools. Journal of Early Intervention, 19, 61–73.
28.
McHaleS. M., & HarrisV. S. (1992). Children's experiences with disabled and nondisabled siblings: Links with personal adjustment and relationship evaluation. In BoerF. & DunnJ. (Eds.), Children's relationships with their siblings: Developmental and clinical implications (pp. 83–100). Hillsdale, NJ: Lawrence Erlbaum Associates.
29.
McHaleS. M., & PawletkoT. M. (1992). Differential treatment of siblings in two family contexts. Child Development, 63, 68–81.
30.
McHaleS. M., SimeonssonR. J., & SloanJ. L. (1984). Children with handicapped brothers and sisters. In SchoplerE. & MesibovG. (Eds.), The effects of autism on the family (pp. 327–342). New York: Plenum.
31.
McHaleS. M., SloanJ., & SimeonssonR. J. (1986). Sibling relationships of children with autistic, mentally retarded, and nonhandicapped brothers and sisters. Journal of Autism and Developmental Disorders, 16, 399–413.
32.
McKeeverP. (1983). Siblings of chronically ill children: A literature review with implications for research and practice. American Journal of Orthopsychiatry, 53, 209–218.
33.
McLindenS. E., MillerL. M., & DepreyJ. M. (1991). Effects of a support group for siblings of children with special needs. Psychology in the Schools, 28, 230–237.
34.
McWilliamR. A., YoungH. J., & HarvilleK. (1996). Therapy services in early intervention: Current status, barriers, and recommendations. Topics in Early Childhood Special Education, 16, 348–374.
35.
MeyerD. J., VadasyP. F., & FewellR. R. (1985). Living with a brother or sister with special needs: A book for sibs. Seattle, WA: University of Washington Press.
36.
MorganD. L. (1988). Focus groups as qualitative research. Newbury Park, CA: Sage.
37.
MorningstarM., TurnbullA. P., & TurnbullH. (1996). What do students with disabilities tell us about the importance of family involvement in the transition from school to adult life?Exceptional Children, 62, 249–260.
38.
PowellT. H., & GallagherP. A. (1993). Brothers and sisters: A special part of exceptional families. Baltimore: Paul H. Brookes.
39.
RyndakD. L., DowningJ. E., JacquelineL. R., & MorrisonA. P. (1995). Parents' perceptions after inclusion of their children with moderate or severe disabilities. Journal of the Association for Persons with Severe Handicaps, 20, 147–157.
40.
SailorW., AndersonJ., HalvorsenA., DoeringK., FillerJ., & GoetzL. (1989). The comprehensive local school: Regular education for all students with disabilities. Baltimore, MD: Paul H. Brookes.
41.
SeidmanI. E. (1991). Interviewing as qualitative research: A guide for researchers in education and the social sciences. New York: Teachers College Press.
42.
SeligmanM. (1983). Siblings of handicapped persons. In SeligmanM. (Ed.), The family with a handicapped child: Understanding and treatment (pp. 147–174). New York: Grune & Stratton.
43.
SimeonssonR. J., & BaileyD. B. (1986). Siblings of handicapped children. In GallagherJ. J. & VietzeP. M. (Eds.), Families of handicapped persons: Research, programs, and policy issues (pp. 67–77). Baltimore: Paul H. Brookes.
44.
SmithJ. D., & HiltonA. (1997). The preparation and training of the educational community for the inclusion of students with developmental disabilities: The MRDD position. Education and Training in Mental Retardation and Developmental Disabilities, 32, 3–10.
45.
StainbackS., & StainbackW. (1992). Curriculum considerations in inclusive classrooms: Facilitating learning for all students. Baltimore, MD: Paul H. Brookes.
46.
StainbackW., & StainbackS. (1990). Support networks for inclusive schooling: Interdependent integrated education. Baltimore, MD: Paul H. Brookes.
47.
StewartD. W., & ShamdasaniP. N. (1990). Focus groups: Theory and practice. Applied Social Research Methods Series, 20. London: Sage.
48.
StockerC., DunnJ., & PlominR. (1989). Sibling relationships: Links with child temperament, maternal behavior and family structure. Child Development, 60, 715–727.
49.
StonemanZ., BrodyG. H., DavisC. H., & CrappsJ. M. (1987). Mentally retarded children and their older same-sex siblings: Naturalistic in-home observations. American Journal of Mental Retardation, 92, 290–298.
50.
StonemanZ., BrodyG. H., DavisC. H., & CrappsJ. M. (1989). Role relations between children who are mentally retarded and their older siblings: Observations in three in-home contexts. Research in Developmental Disabilities, 10, 61–76.
51.
TaylorS. J., & BogdanR. (1984). Introduction to qualitative research methods: The search for meanings (2nd Ed.). New York: John Wiley & Sons.
52.
VillaR., ThousandJ., StainbackW., & StainbackS. (1992). Restructuring for caring and effective education: An administrative guide to creating heterogeneous schools. Baltimore, MD: Paul H. Brookes.
WestlingD. L. (1996). What do parents of children with moderate and severe mental disabilities want?Education and Training in Mental Retardation and Developmental Disabilities, 31, 86–114.
55.
WilsonJ., BlacherJ., & BakerB. L. (1989). Siblings of children with severe handicaps. Mental Retardation, 27, 167–173.
