Supporting Families of Children with Disabilities: What’s Missing?
Main Article Content
Keywords
with disabilities, family-centered, disability policy
Abstract
This article presents findings from a web-based survey in which advocates and primary caregivers of children with disabilities were asked to indicate their level of satisfaction with various services and service providers, and their perceptions about how closely these services centered on family needs. A total of 68 valid responses to this pilot survey were obtained from subscribers of electronic mailing groups. The survey included questions about accessibility and affordability of services, satisfaction with services, degree of family involvement allowed by service providers, and information relating to the family-centered principles of treating and educating children with different types of disabilities. Eighty percent (80%) of respondents described a frustrating and invalidating process for acquiring services. However, once families were in the health care, educational, and social services systems, they reported finding the services received helpful. Implications for disability and health care policy derived from this research are offered.
References
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Dunst, C. J., Trivette, C. M., & Hamby, D. W. (1996). Measuring the help-giving practices of human services program practitioners. Human Relations, 49(6), 815-835.
Flowers, C. P., Bray, M., & Algozzine, R. F. (1999). Accessibility of special education program home pages. Journal of Special Education Technology [On-line], 14(2). Retrieved December 7, 2006 from, http://relayweb.hwwilsonweb.com
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Fujira, G. T., Roccoforte, J. A., & Braddock, D. (1994). Cost of family care for adults with mental retardation and related developmental disabilities. American Journal on Mental Retardation, 99(3), 250-61.
Gaddis, S. E. (1998). How to design on-line surveys. Training and Development [On-line], 52(6). Retrieved December 7, 2006 from, http://newfirstsearch.oclc.org
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Simeonsson, R. J., Bailey, D. B., Huntington, G. S., & Brandon, L. (1991). Brief report: Scaling and attainment of goals in family-focused early intervention. Community Mental Health Journal, 27(1), 77-83.
Streeter, C., & Franklin, C. (1992). Defining and measuring social support: Guidelines for social work practitioners. Research in Social Work Practice, 2, 81-98.
Streissguth, A. P. (1997a). Fetal alcohol syndrome: A guide for families and communities. Baltimore, MD: Paul. H. Brookes Publishing Co.
Streissguth, A. P. (1997b). The challenge of fetal alcohol syndrome: Overcoming secondary disabilities. Seattle, WA: University of Washington Press.
Streissguth, A. P., Barr, H. M., Kogan, J., & Bookstein, F. L. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). [Centers for Disease Control and Prevention Grant No. R04/CCR008515]. Seattle, WA: University of Washington Press.
Trivette, C. M., Dunst, C. J., & Hamby, D. W. (1996). Factors associated with perceived control appraisals in a family-centered early intervention program. Journal of Early Intervention, 20(2), 165-170.
Trivette, C. M., Dunst, C. J., Boyd, K., & Hamby, D. W. (1996). Family-oriented program models, help-giving practices, and parental control appraisals. Exceptional Children, 62(3), 237-248.
U.S. Department of Health and Human Services. (2002a). AHRQ Focus on Research: Improving Health Care for Americans with Disabilities. (Agency for Healthcare Research and Quality No. 02-M016). Rockville, MD: Author. [On-line], Retrieved December 7, 2006 from http://www.ahrq.gov/news/focus/focdisab.htm
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Arango, P. (1999). A partnership. The Exceptional Parent, 29(6), 30-35.
Bailey, D. (2000). Family orientation of community and agency services. University of North Carolina at Chapel Hill: Frank Porter Graham Child Development Center.
Bailey, D., Buysse, V., Edmondson, R., Smith, T. (1992). Creating [a family-centered services?] in early intervention: Perceptions of professionals in four states. Exceptional Children, 58(4), 298-309.
Bailey, D. B., McWilliamet al. (1998). Family outcomes in early intervention: A framework for program evaluation and efficacy research. Exceptional Children, 64(3), 313-328.
Bauman, S., & Airey, J. (2000). Wirthlin Worldwide. Market Research [online]. Retrieved February 9, 2001, from http://www.wirthlin.com/aboutww/casro_art.htm
D'Antuono, R. (1998). Good business. Academic Clinical Practice [On-line], 11(4). Retrieved when? from, http://www.aamc.org/about/gfp/acprac/fall98/patfam.html
Denzin, N. K., & Lincoln, Y. (Eds.). (1998). Handbook of qualitative research. Thousand Oaks, Ca.: Sage Publications.
Dunst, C. J., Johanson, C., Trivette, C. M., & Hamby, D. (1991). Family-oriented early intervention policies and practices: Family-centered or not? Exceptional Children, 58(2), 115-126.
Dunst, C. J., Trivette, C. M., & Hamby, D. W. (1996). Measuring the help-giving practices of human services program practitioners. Human Relations, 49(6), 815-835.
Flowers, C. P., Bray, M., & Algozzine, R. F. (1999). Accessibility of special education program home pages. Journal of Special Education Technology [On-line], 14(2). Retrieved December 7, 2006 from, http://relayweb.hwwilsonweb.com
Frey, L., Szalda-Petree, A., Traci, M. A., & Seekins, T. (2001). Prevention of secondary health conditions in adults with developmental disabilities: A review of the literature. Disability and Rehabilitation, 23(9), 361-369.
Fujira, G. T., Roccoforte, J. A., & Braddock, D. (1994). Cost of family care for adults with mental retardation and related developmental disabilities. American Journal on Mental Retardation, 99(3), 250-61.
Gaddis, S. E. (1998). How to design on-line surveys. Training and Development [On-line], 52(6). Retrieved December 7, 2006 from, http://newfirstsearch.oclc.org
Gibson, C. H. (1995). The process of empowerment in mothers of chronically ill children. Journal of Advanced Nursing, 21, 1201-1210.
Grahn, J., & Swenson, D. X. (1998). Recasting education and research processes for mutual student/faculty benefits. Journal of Education for Business [On-line], 73(4). Retrieved December 7, 2006 from http://relayweb.hwwilsonweb.com
Hostler, S. L. (1994). Pediatric family-centered rehabilitation. Journal of Head Trauma Rehabilitation, 14(4), 383-393.
Johnson, B. H. (1999). Family Focus. Trustee, 52(3), 12-15.
King, G. A., Rosenbaum, P. L., & King, S. M. (1997). Evaluating family-centered service using a measure of parents' perceptions. Child: Care, Health, and Development, 23(1), 47-62.
Leaver, D. (2000). Survey research techniques. Radiologic Technology [On-line], 71(4). Retrieved December 7, 2006 from http://web4.infotrac.galegroup.com
McCarthy, M. G., & Stough, L. M. (1999). The qualifying game: A search for services by individuals with disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 34(4), 485-498.
Murphy, D. L., Lee, I. M., Turbiville, V., Turnbull, A. P., & Summers, J. A. (1991). Family-centered program rating scale: Parent's scale. University of Kansas: Beach Center on Families and Disability. Retrieved from http://www.kubeachcenter.com/frame2.htm
Murphy, D. L., Lee, I. M., Turnbull, A. P., & Turbiville, V. (1995). The Family-centered program rating scale: An instrument for program evaluation and change. Journal of Early Intervention, 19(1), 24-42.
National Council on Disability (2000). Back to school report on IDEA monitoring. Washington, D.C. Retrieved December 7, 2006 from www.ncd.gov/newsroom
Newacheck, P. W., Strickland, B., Shonkoff, J. P., Perrin, J., McPherson, M., Lauver, C., et al. (1998). An epidemiologic profile of children with special health care needs. Pediatrics, 102(1), 117-123.
Patterson, J. M., Garwick, A. W., Bennett, F. C., & Blum, R. (1997). Social support in families of children with chronic conditions: Supportive and nonsupportive behaviors. Journal of Developmental and Behavioral Pediatric, 18(6), 383-391.
Powell, J. Y. (1996). A schema for family-centered practice. Families in Society: The Journal of Contemporary Human Services, 446-448.
Ritchie, J., Stewart, M., Ellerton, M., Thompson, D., Meade, D., & Viscount, P.W. (2000). Parents’ perceptions of the impact of a telephone support group intervention, Journal of Family Nursing, 6(1), 25-45.
Rondero, V. (2001). On the right track: Identifying processes and experiences associated with the occurrence of secondary conditions. Unpublished manuscript, Walter Richter Institute of Social Work Research, College of Health Professions, School of Social Work, Southwest Texas State University at San Marcos.
Schonlau, M., Fricker, R. D., & Elliott, M. N. (2001). Conducting research surveys via e-mail and the web. Retrieved December 7, 2006 from http://www.rand.org/publications/MR/MR1480/
Selber, K. (2001). On the right track: A Texas Roadmap for prevention of secondary conditions. Unpublished manuscript, School of Social Work, Texas State University at San Marcos.
Selber, K., Rondero-Hernandez, V., & Tijerina, M. (in press). Developing family centered models of care for genetic services: A template for seeking consumer and provider perceptions of care. Journal of Social Work in Disability and Rehabilitation, 4(4).
Simeonsson, R. J. (1994). Risk, resilience & prevention: Promoting the well-being of all children. Baltimore, MD: Paul H. Brookes Publishing Co.
Simeonsson, R. J., Bailey, D. B., Huntington, G. S., & Brandon, L. (1991). Brief report: Scaling and attainment of goals in family-focused early intervention. Community Mental Health Journal, 27(1), 77-83.
Streeter, C., & Franklin, C. (1992). Defining and measuring social support: Guidelines for social work practitioners. Research in Social Work Practice, 2, 81-98.
Streissguth, A. P. (1997a). Fetal alcohol syndrome: A guide for families and communities. Baltimore, MD: Paul. H. Brookes Publishing Co.
Streissguth, A. P. (1997b). The challenge of fetal alcohol syndrome: Overcoming secondary disabilities. Seattle, WA: University of Washington Press.
Streissguth, A. P., Barr, H. M., Kogan, J., & Bookstein, F. L. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). [Centers for Disease Control and Prevention Grant No. R04/CCR008515]. Seattle, WA: University of Washington Press.
Trivette, C. M., Dunst, C. J., & Hamby, D. W. (1996). Factors associated with perceived control appraisals in a family-centered early intervention program. Journal of Early Intervention, 20(2), 165-170.
Trivette, C. M., Dunst, C. J., Boyd, K., & Hamby, D. W. (1996). Family-oriented program models, help-giving practices, and parental control appraisals. Exceptional Children, 62(3), 237-248.
U.S. Department of Health and Human Services. (2002a). AHRQ Focus on Research: Improving Health Care for Americans with Disabilities. (Agency for Healthcare Research and Quality No. 02-M016). Rockville, MD: Author. [On-line], Retrieved December 7, 2006 from http://www.ahrq.gov/news/focus/focdisab.htm
U.S. Department of Health and Human Services. (2002b). Health care costs: Fact sheet. (Agency for Healthcare Research and Quality No. 02-P033). Rockville, MD: Author. [On-line], Retrieved December 7, 2006 from http://www.ahrq.gov/news/costsfact.htm
U.S. Department of Health and Human Services. (2002c). Research findings #3: Access to health care -- Sources and barriers, 1996. Rockville, MD: Agency for Healthcare Research and Quality. [On-line], Retrieved December 7, 2006 from http://www.meps.ahrq.gov/papers/rf3_98-0001/rf3.htm
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Dec 2, 2014
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Author Biographies
Katherine Selber, Associate Professor, School of Social Work, Texas State University-San Marcos
Dr. Katherine Selber is an Associate Professor and Dr. Mary Tijerina is an Assistant Professor in the School of Social Work at Texas State University-San Marcos.
Mary Tijerina, Assistant Professor, School of Social Work, Texas State University-San Marcos
Dr. Mary Tijerina is an Assistant Professor in the School of Social Work at Texas State University-San Marcos.
Virginia Rondero Hernandez, Assistant Professor at California State University, Fresno
Dr. Virginia Rondero Hernandez is an Assistant Professor at California State University, Fresno.
Cathryn Heyman, Texas State University-San Marco
Ms. Cathryn Heyman, M.A. was a graduate research assistant at Texas State University-San Marcos at the time of this study.