This article presents the results of a study of rural caregivers who have adults with severe developmental delays living at home with them. It examines their demographic characteristics, their perceived levels of stress, and the coping skills they use to deal with that stress. This article provides information on the availability and utilization of social services for the adults with mental retardation and developmental disabilities (MR/DD) and their families. In addition, the service needs, stresses experienced, and coping skills of these families are examined according to majority and minority racial status. This type of information should be valuable to policy makers, agency administrators, and program planners to improve the development, targeting, and accessibility of rural programs and services. For the purpose of this study, the term “developmental disability” refers to both mental and physical delays and is sometimes represented as MR/DD, which is consistent with the literature on this population.
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References
1.
ArandaM., & KnightB. (1997). The influence of ethnicity and culture on the caregiver stress and coping process: A sociocultural review and analysis. The Gerontologist, 37(3), 342–354.
2.
BlackM., CohnJ., SmullM., & CritesL. (1985). Individual and family factors associated with risk of institutionalization of mentally retarded adults. American Journal of Mental Deficiency, 90(3), 271–276.
3.
BlackM., MolaisonV., & SmullM. (1990). Families caring for a young adult with mental retardation: Service needs and urgency of community living requests. American Journal of Mental Deficiency, 95(1), 32–39.
4.
Borthwick-DuffyS., EymanR., & WhiteJ. (1987). Client characteristics and residential placement patterns. American Journal of Mental Deficiency, 92, 24–30.
5.
BrothersonM., TurnbullA., BronickiG., HoughtonJ., Roeder-GordonC., SummersJ., & TurnbullH. (1988, September). Transition into adulthood: Parental planning for sons and daughters with disabilities. Education and Training in Mental Retardation, 165–174.
6.
Carlton-LaNeyI. (1991). Some considerations of the rural elderly black's underuse of social services. Journal of Gerontological Social Work, 16(2), 3–17.
7.
Center for Rural Health and Social Service Development (1990). Rural health and social services: An annotated bibliography.Carbondale, IL: Southern Illinois University at Carbondale.
8.
Children's Defense Fund. (1974). Children out of school in America.Cambridge, MA: Author.
9.
ChwaliszK., & KislerV. (1995). Perceived stress: A better measure of caregiver burden. Measurement and Evaluation in Counseling and Development, 28, 88–98.
10.
CohenS., KamarckT., & MermelsteinR. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 385–396.
11.
CohenS., & WilliamsonG. (1988). Perceived stress in a probability sample in the United States. In SpacapanS., & OskampS. (Eds.), The social psychology of health (pp. 253–267). Newbury Park, CA: Sage Publications.
12.
Congress of the United States Office of Technology Assessment (1990). Health care in rural America.Washington, DC: U.S. Government Printing Office.
13.
CoxC. (1995). Comparing the experiences of black and white caregivers of dementia patients. Social Work, 40(3), 343–349.
14.
FoyE. (1997). Parental grieving of childhood disability: A rural perspective. Australian Social Work, 50(1), 39–44.
15.
FujiuraG., RoccoforteJ., & BraddockD. (1994). Costs of family care for adults with mental retardation and related developmental disabilities. American Journal on Mental Retardation, 99(3), 250–261.
16.
GutierrezL. M. (1990). Working with women of color: An empowerment perspective. Social Work, 35(2), 149–153.
17.
HansonM. (1992). Ethnic, cultural, and language diversity in intervention settings. In LynchE. W., & HansonM. J. (Eds.), Developing cross-cultural competence: A guide for working with young children and their families (pp. 3–18). Baltimore: Paul H. Brookes Publishing Co.
18.
HarryB. (1992). Cultural diversity, families, and the special education system: Communication and empowerment.New York: Teachers College Press.
19.
HaydenM. (1992). Adults with mental retardation and other developmental disabilities waiting for community-based services in the United States. Policy Research Brief, 4(3), 1–16.
20.
HaydenM., & DePaepeP. (1994). Waiting for community services: The impact on persons with mental retardation and other developmental disabilities. In HaydenM., & AberyB. (Eds.), Challenges for a service system in transition: Ensuring quality community experiences for persons with developmental disabilities.Baltimore: Paul H. Brookes Publishing Co.
21.
HaydenM., & Goldman (1996). Families of adults with mental retardation: Stress levels and need for services. Social Work, 41(6), 657–667.
22.
HodgeF., & EdmondsR. (1988). Socio-cultural aspects of disability: A three area survey of disabled American Indians.Tucson, AZ: Native American Research and Training Center.
23.
HurdE., MooreC., & RogersR. (1995). Quiet success: Parenting strengths among African Americans. Families in Society, 76(7), 434–443.
24.
IttenbachR., LiX., & SpiegelA. (1990). Analysis with missing data: Issues and techniques for social scientists. Paper presented at the annual meeting of the American Association of University Affiliated Programs for Persons with Developmental Disabilities.
25.
KleinS. (1997). Parenting, how long?The Exceptional Parent, 27(7), 2–3.
26.
KnollJ. (1990). Family support: A challenge for the 1990's. Exceptional Parent, 20(4), 28–34.
27.
LakinK., & BruininksR. (1985). Challenges to advocates of social integration of developmentally disabled persons. In LakinK. C., & BruininksR. H. (Eds.), Strategies for achieving community integration of developmentally disabled citizens.Baltimore: Paul H. Brookes Publishing Co.
28.
LaPlanteM. (1991). Medical conditions associated with disability. In FitzgeraldI., & Thompson-HoffmanS. (Eds.), Disability in the United States.New York: Springer Publishing Co.
29.
MarcosL. (1986, April). Understanding ethnicity in serving Hispanic mentally disabled. Paper presented at the Conference on Quality of Care, New York State Commission on Quality of Care for the Mentally Disabled, Albany, New York.
30.
McCubbinH. I., OlsonD., & LarsenA. (1981). Family Crisis Oriented Personal Evaluation Scales (F-COPES). In H. I. McCubbin, A. I. Thompson, & M. A. McCubbin (1996). Family assessment: Resiliency, coping and adaptation – Inventories for research and practice. (pp. 455–507). Madison, WI: University of Wisconsin System.
31.
McCubbinH. I., & PattersonJ. M. (1983). The family stress process: The double ABCX model of family adjustment and adaptation. In McCubbinH., SussmanM., & PattersonJ. (Eds.), Advances and developments in family stress theory and research.New York: Haworth.
32.
McDonaldT., PoertnerJ., & PierpontJ. (1999). Predicting care-giver stress: An ecological perspective. American Journal of Orthopsychiatry, 69(1), 100–109.
33.
MeyersC., BorthwickS., & EymanR. (1985). Place of residence by age, ethnicity, and level of retardation of the mentally retarded/developmentally disabled population of California. American Journal of Mental Deficiency, 90, 266–270.
34.
ModellS., & ImwoldC. (1998). Parental attitudes toward inclusive recreation and leisure; A qualitative analysis. Parks & Recreation, 33(5), 88–93.
35.
O'ConnorS. (1993). “I'm not Indian anymore”: The challenge of providing culturally sensitive services to American Indians. In RacinoJ. A., WalkerP., O'ConnorS., & TaylorS. (Eds.), Housing, support, and community: Choices and strategies for adults with disabilities (pp. 313–331). Baltimore: Paul H. Brookes Publishing Co.
36.
RosenthalE., & CartyL. (1988). Impediments to services and advocacy for black and Hispanic people with mental illness.Washington, DC: Mental Health Law Project.
37.
SeltzerM. (1992). Family caregiving across the full life span. In RowitzL. (Ed.), Mental retardation in the year 2000 (pp. 85–100). New York: Springer-Verlag.
38.
SeltzerM., KrausM., & HellerT. (1990). Boston roundtable on research issues and application in aging and developmental disabilities.Boston: Gerontological Society of America.
39.
SmullM. (1989). Crisis in the community.Baltimore: Department of Pediatrics, School of Medicine (Applied Research and Evaluation Unit).
40.
SpenceS. A. (1991). The black elderly and community-based social services. Families in Society, 72(3), 371–374.
41.
StueveA., VineP., & StrueningL. (1997). The black elderly and community-based social services. Families in Society, 72(3), 199–209.
42.
TraustadottirR., LutfiyyaZ., & ShoultzB. (1994). Community living: A multicultural perspective. In HaydenM., & AberyB. (Eds.), Challenges for a service system in transition.Baltimore: Paul H. Brookes Publishing Co.
43.
U.S. Department of Commerce. (1992). Statistical abstract of the United States 1992: The national data book.Washington, DC: Author.
44.
U.S. Department of Health and Human Services (1993). Social security programs throughout the world - 1993.Washington, DC: Author.
45.
ValentineD., McDermottS., & AndersonD. (1998). Mothers of adults with mental retardation: Is race a factor in perceptions of burdens and gratifications?Families in Society, 79(6), 577–584.
46.
YatesJ. (1989). Demography as it affects special education. In OrtizA. A., & RamirezB. A. (Eds.), Schools and the culturally diverse exceptional student: Promising practices and future directions (pp. 1–5). Reston, VA: The Council for Exceptional Children.
47.
YellM., RogersD., & RogersE.L. (1998). The legal history of special education. What a long, strange trip it's been!Remedial and Special Education, 19(4), 219–230.
