Disabilities
Programs And Interventions
The unit of care and support when a person has a disability should be the family or caregiving system, not just the individual (McDaniel, Hepworth, and Doherty 1992). As already noted, the family is both affected by the disability and is a major source of capabilities for responding to it. Within the United States, there is a strong emphasis on family support initiatives as a way to improve the quality of life for people with disabilities (Dunst et al. 1993). Family support has been articulated in the philosophy of the Maternal and Child Health Bureau with regard to children with special health needs: Care should be family-centered, community-based, coordinated, comprehensive, and culturally competent (Hutchins and McPherson 1991).
Family support is also being implemented in early intervention programs for children with disabilities. Federal legislation has mandated states to develop systems of care that integrate health, education, and social services for these children and their families. One component of this legislation calls for an individual family service plan (McGonigel and Garland 1988). There is a meeting of family members and professionals serving the child to develop a comprehensive plan for meeting the needs of the child and the family. Families have a key role in identifying the needs and in identifying their strengths. The intent of the legislation is that parents should be included as an equal partner and full collaborator in deciding about and managing their child's care.
At the heart of the family support movement is the concept of family empowerment, which is defined as enabling an individual or family to increase their abilities to meet needs and goals and maintain their autonomy and integrity (Patterson and Geber 1991). Rather than the helper doing everything for the person being helped, thus maintaining dependency, a process is begun whereby the help-seeker discovers and builds on his or her own strengths, leading to a greater sense of mastery and control over his or her life.
Professionals who provide services to persons with disabilities and their families are being challenged to use this orientation when working with families. Training programs have curricula for developing these skills in new professionals. The emphasis is on the process of providing services and not just the outcomes. Empowerment involves believing in and building on the inherent strengths of families; respecting their values and beliefs; validating their perceptions and experiences as real; creating opportunities for family members to acquire knowledge and skills so they feel more competent; mobilizing the family to find and use sources of informal support in the community; and developing a service plan together and sharing responsibility for it (Dunst et al. 1993; Knoll 1992).
Coordination is another important way by which service delivery can be improved for persons with disabilities. Many persons need a multiplicity of services, and often they do not know what they are eligible for or where to find it. Case management or care coordination is needed to provide this information, to create linkages among these providers, and to assure that families are given complete and congruent information (Sloper and Turner 1992). In some instances, families are able to function as their own case managers, but this requires a high level of knowledge as well as skill in dealing with a bureaucratic system. Furthermore, it consumes a lot of time that many family members would prefer to devote to meeting other family needs. High-quality care coordination can reduce costs, relieve family stress, and improve the quality of life for persons with disabilities.
Another strategy to facilitate family coping and adaptation is linking persons with disabilities and their families together in support programs. There are many support groups for specific conditions (epilepsy, spina bifida, etc.) across the country that meet regularly to provide information and emotional support to those living with disability. In other instances, someone who has lived with the disability for a long time is paired with someone newly diagnosed (Santelli et al. 1993). These informal connections (in contrast to professional therapy services) are particularly effective because people feel they are not alone and are not abnormal in their struggles. There is the opportunity both to give and to receive support, which benefits both sides.
While family members are the primary source for providing care and assistance to a person with a disability, many families are unable to do this for an extended period of time without help from other community sources (Nosek 1993). Many persons with disability now use personal assistance services on a regular basis, which relieves the family of these tasks and allows them to interact with the person with a disability in more normative ways. In addition, personal assistants contribute to an adult's ability to make independent choices about where he or she will live. It makes it possible to transition from the family home and to live as an adult in the community.
Respite care is another community resource that can give families a break from caretaking and prevent total burnout and exhaustion (Folden and Coffman 1993). Respite care is usually provided on an as-needed basis, in contrast to personal assistants, who are usually available every day. When these kinds of resources are available to support families in their caregiving efforts, the families are better able to keep the persons with disability at home, and they do not have to turn to institutional placement.
Many different types of interventions have been developed by psychologists, social workers, and other mental health professionals for families who have members with disabilities (Singer and Powers 1993). These psychoeducational interventions are designed with a variety of goals in mind. They may be designed to support families in dealing with their emotional responses or to teach skills and strategies for managing difficult behavior. Programs may teach techniques for managing stress more effectively, or they may teach family members how to interact with professional providers of services. Some programs target one individual in the family, such as the primary caregiver; in other instances the whole family is the unit of intervention (Gonzalez, Steinglass, and Reiss 1989). Many families with members with disabilities are reluctant to use psychological resources because they cannot find time to go or they may interpret use as a judgment that they are not competent. Generally, persons from lower socioeconomic groups are more likely to view therapy as stigmatizing and so do not participate. Given the evidence that disability increases stress in families and increases the chance that someone will experience psychological or behavioral problems, programs and services to help families cope could prevent many of these secondary problems.
With increasing numbers of persons experiencing disability in the United States and with the reality that families are their primary source of care, it is important that public policies are designed so that families are given the support they need to fulfill this important role. Most families want to provide assistance to their members. However, community resources are also needed to augment their contributions. This kind of family-community collaboration will ultimately contribute to the best quality of life for persons with disabilities, members of their families, and the people in their communities.
See also: ALZHEIMER'S DISEASE; ANXIETY DISORDERS; BOUNDARY AMBIGUITY; CAREGIVING: FORMAL; CAREGIVING: INFORMAL; CHILDCARE; CHRONIC ILLNESS; COMMUNICATION: FAMILY RELATIONSHIPS; DEATH AND DYING; DEMENTIA; DEVELOPMENTAL DISABILITIES; DEVELOPMENTAL PSYCHOPATHOLOGY; ELDERS; FAMILY ROLES; FAMILY STRENGTHS; FAMILY SYSTEM THEORY; GRIEF, LOSS, AND BEREAVEMENT; HEALTH AND FAMILIES; RESPITE CARE: ADULT; RESPITE CARE: CHILD; SCHOOL; STRESS
Bibliography
Albrecht, G.; Seelman, K.; and Bury, M. (2001). Handbook of Disability Studies. Thousand Oaks, CA: Sage Publications.
Austin, J., and McDermott, N. (1988). "Parental Attitude and Coping Behavior in Families of Children with Epilepsy." Journal of Neuroscience Nursing 20:174–179.
Baxter, C.; Cummins, R.; and Polak, S. (1995). "A Longitudinal Study of Parental Stress and Support: From Diagnosis of Disability to Leaving School." International Journal of Disability, Development, and Education 42:125–136.
Beavers, J.; Hampson R.; Hulgus, Y.; and Beavers, W. (1986). "Coping in Families with a Retarded Child." Family Process 25:365–378.
Behr, S., and Murphy, D. (1993). "Research Progress and Promise: The Role Perceptions in Cognitive Adaptation to Disability." In Cognitive Coping, Families, and Disability, ed. A. Turnbull, J. Patterson, S. Behr, D. Murphy, J. Marquis, and M. Blue-Banning. Baltimore: Paul H. Brookes.
Biegel, D.; Sales, E.; and Schulz, R. (1991). Family Care-giving in Chronic Illness. Newbury Park, CA: Sage Publications.
Blackburn, J. (1988). "Chronic Health Problems of the Elderly." In Chronic Illness and Disability, ed. C. Chilman, E. Nunnally, and F. Cox. Newbury Park, CA: Sage Publications.
Boss, P. (1993). "The Reconstruction of Family Life with Alzheimer's Disease: Generating Theory to Lower Family Stress from Ambiguous Loss." In Sourcebook of Family Theories and Methods: A Contextual Approach, ed. P. Boss, W. Doherty, R. LaRossa, W. Schumm, and S. Steinmetz. New York: Plenum.
Breslau, N. (1993). "Psychiatric Sequelae of Brain Dysfunction in Children: The Role of Family Environment." In How Do Families Cope with Chronic Illness?, ed. R. Cole and D. Reiss. Hillsdale, NJ: Lawrence Erlbaum.
Brody, E. (1985). "Parent Care as a Normative Family Stress." Gerontologist 25:19–29.
Cadman, D.; Boyle, M.; Szatmari, P.; and Offord, D. (1987). "Chronic Illness, Disability, and Mental and Social Well-Being: Findings of the Ontario Child Health Study." Pediatrics 79:805–812.
Cappelli, M.; McGrath, P.; MacDonald, N.; Katsanis, J.; and Lascelles, M. (1989). "Parental Care and Overprotection of Children with Cystic Fibrosis." British Journal of Medical Psychology 62:281–289.
Chesler, M., and Barbarin, O. (1987). Childhood Cancer and the Family: Meeting the Challenge of Stress and Support. New York: Brunner/Mazel.
Chilman, C.; Nunnally, E.; and Cox, F., eds. (1988). Chronic Illness and Disability. Newbury Park, CA: Sage Publications.
Cohen, M. (1999). "Families Coping with Childhood Chronic Illness: A Research Review." Families, Systems, and Health 17:149–164.
Cole, R., and Reiss, D. (1993). How Do Families Cope with Chronic Illness? Hillsdale, NJ: Lawrence Erlbaum.
Coupey, S. M., and Cohen, M. I. (1984). "Special Considerations for the Health Care of Adolescents with Chronic Illnesses." Pediatric Clinics of North America 31:211–219.
Cowen, L.; Corey, M.; Keenan, N.; Simmons, R.; Arndt, E.; and Levison, H. (1985). "Family Adaptation and Psychosocial Adjustment to Cystic Fibrosis in the Preschool Child." Social Science and Medicine 20:553–560.
Daniels, D.; Moos, R.; Billings, A.; and Miller, J. (1987). "Psychosocial Risk and Resistance Factors Among Children with Chronic Illness, Healthy Siblings, and Healthy Controls." Journal of Abnormal Child Psychology 15:295–308.
Donovan, A. (1988). "Family Stress and Ways of Coping with Adolescents Who Have Handicaps: Maternal Perceptions." American Journal of Mental Retardation 92:502–509.
Dunst, C.; Trivette, C.; and Deal, A. (1988). Enabling and Empowering Families: Principles and Guidelines for Practice. Cambridge, MA: Brookline Books.
Dunst, C.; Trivette, C.; Starnes, A.; Hamby, D.; and Gordon, N. (1993). Building and Evaluating Family Support Initiatives. Baltimore: Paul H. Brookes.
Dyson, L. (1993). "Response to the Presence of a Child with Disabilities: Parental Stress and Family Functioning over Time." American Journal on Mental Retardation 98:207–218.
Eisenberg, M. G.; Sutkin, L. C.; and Jansen, M. A:, eds. (1984). Chronic Illness and Disability Through the Lifespan: Effects on Self and Family. New York: Springer-Verlag.
Evans, R.; Bishop, D.; and Ousley, R. (1992). "Providing Care to Persons with Physical Disability: Effect on Family Caregivers." American Journal of Physical Medicine and Rehabilitation 71:140–144.
Fitzsimmons, S. C. (1991). Cystic Fibrosis Foundation Patient Registry Pulmonary Data 1990. Bethesda, MD: Cystic Fibrosis Foundation.
Folden, S., and Coffman, S. (1993). "Respite Care for Families of Children with Disabilities." Journal of Pediatric Health Care 7:103–110.
Foster, M., and Berger, M. (1985). "Research with Families with Handicapped Children: A Multilevel Systemic Perspective." In The Handbook of Family Psychology and Therapy, Vol. II, ed. L. L'Abate. Homewood, IL: Dorsey Press.
Frey, K.; Greenberg, M.; and Fewel, R. (1989). "Stress and Coping Among Parents of Handicapped Children: A Multidimensional Approach." American Journal of Mental Retardation 94:240–249.
Gonzalez, S.; Steinglass, P.; and Reiss, D. (1989). "Putting the Illness in Its Place: Discussion Groups for Families with Chronic Medical Illnesses." Family Process 28:69–87.
Hirst, M. (1991). "Dissolution and Reconstitution of Families with a Disabled Young Person." Developmental Medicine and Child Neurology 33:1073–1079.
Hodapp, R.M. (1998). Development and Disabilities: Intellectual, Sensory and Motor Impairments. New York: Cambridge University Press.
Holmes, D. M. (1986). "The Person and Diabetes in Psychosocial Context." Diabetes Care 9:194–206.
Holroyd, J., and Guthrie, D. (1986). "Family Stress with Chronic Childhood Illness: Cystic Fibrosis, Neuromuscular Disease, and Renal Disease." Journal of Clinical Psychology 42:552–561.
Hornby, G. (1992). "A Review of Fathers' Accounts of Their Experiences of Parenting Children with Disabilities." Disability, Handicap, and Society 7:363–374.
Hutchins, V., and McPherson, M. (1991). "National Agenda for Children with Special Health Needs." American Psychologist 46:141–143.
Ireys, H., and Burr, C. (1984). "Apart and A Part: Family Issues for Young Adults with Chronic Illness and Disability." In Chronic Illness and Disability Through the Life Span: Effects on Self and Family, ed. M. G. Eisenberg, L. C. Sutkin, and M. A. Jansen. New York: Springer-Verlag.
Jessop, D.; Riessman, C.; and Stein, R. (1988). "Chronic Childhood Illness and Maternal Mental Health." Journal of Developmental and Behavioral Pediatrics 9:147–156.
Kazak, A: (1989). "Family Functioning in Families with Older Institutionalized Retarded Offspring." Journal of Autism and Developmental Disorders 19:501–509.
Knoll, J. (1992). "Being a Family: The Experience of Raising a Child with a Disability or Chronic Illness." Monographs of the American Association on Mental Retardation 18:9–56.
Krause, M., and Seltzer, M. (1993). "Coping Strategies Among Older Mothers of Adults with Retardation: A Lifespan Developmental Perspective." In Cognitive Coping, Families, and Disability, ed. A: Turnbull, J. Patterson, S. Behr, D. Murphy, J. Marquis, and M. Blue-Banning. Baltimore: Paul H. Brookes.
Kupst, M., and Schulman, J. (1988). "Long-Term Coping with Pediatric Leukemia: A Six-Year Follow-Up Study." Journal of Pediatric Psychology 13:7–22.
LaPlante, M. P. (1988). Data on Disability from the National Health Interview Survey, 1983–1985: An InfoUse Report. Washington, DC: National Institute on Disability and Rehabilitation Research.
Lopez, S. (1998). "Maternal Reactions to Children with Mental Retardation." In Handbook of Mental Retardation and Development, ed J. Burack, R. Hodapp, and E. Zigler. New York: Cambridge University Press.
Marshak, L.; Seligman, M.; and Prezant, F. (1999). Disability and the Family Life Cycle. New York: Basic Books.
McDaniel, S.; Hepworth, J.; and Doherty, W. (1992). Medical Family Therapy. New York: Basic Books.
McGonigel, M., and Garland, C. (1988). "The Individualized Family Service Plan and the Early Intervention Team: Team and Family Issues and Recommended Practices." Infants and Young Children l:10–21.
Murphy, M. A. (1982). "The Family with a Handicapped Child: A Review of the Literature." Developmental and Behavioral Pediatrics 3:73–82.
National Center for Health Statistics. (1989). "Current Estimates from the National Health Interview Survey, 1988." Vital and Health Statistics. Series 10, no. 166, PHS 89–1501. Washington, DC: U.S. Government Printing Office.
Newbrough, J.; Simpkins, C.; and Maurer, M. (1985). "A Family Development Approach to Studying Factors in the Management and Control of Childhood Diabetes." Diabetes Care 8:83–92.
Nosek, M. (1993). "Personal Assistance: Its Effect on the Long-Term Health of a Rehabilitation Hospital Population." Archives of Physical Medicine and Rehabilitation 74:127–132.
Patterson, J. (1988). "Chronic Illness in Children and the Impact: on Families." In Chronic Illness and Disability, ed. C. Chilman, E. Nunnally, and F. Cox. Newbury Park, CA: Sage Publications.
Patterson, J. (1991a). "A Family Systems Perspective for Working with Youth with Disability." Pediatrician 18:129–141.
Patterson, J. (1991b). "Family Resilience to the Challenge of a Child's Disability." Pediatric Annals 20:491–496.
Patterson, J.; Budd, J.; Goetz, D.; and Warwick, W. (1993). "Family Correlates of a Ten-Year Pulmonary Health Trend in Cystic Fibrosis." Pediatrics 91:383–389.
Patterson, J., and Geber, G. (1991). "Preventing Mental Health Problems in Children with Chronic Illness or Disability." Children's Health Care 20:150–161.
Patterson, J., and Leonard, B. (1994). "Caregiving and Children." In Family Caregiving Across the Lifespan, ed. E. Kahana, D. Biegel, and M. Wykle. Newbury Park, CA: Sage Publications.
Patterson, J.; Leonard, B.; and Titus, J. (1992). "Home Care for Medically Fragile Children: Impact on Family Health and Well-Being." Developmental and Behavioral Pediatrics 13:248–255.
Perrin, E., and Gerrity, P. S. (1984). "Development of Children with a Chronic Illness." Pediatric Clinics of North America 31:19–31.
Perrin, E.; Newacheck, P.; Pless, I; Drotar, D.; Gortmaker, S.; Leventhal, J.; Perrin, J.; Stein, R.; Walker, D.; and Weitzman, M. (1993). "Issues Involved in the Definition and Classification of Chronic Health Conditions." Pediatrics 91:787–793.
Pope, A., and Tarlov, A., eds. (1991). Disability in America: Toward a National Agenda for Prevention. Washington, DC: National Academy Press.
Reiss, D.; Steinglass, P.; and Howe, G. (1993). "The Family's Reorganization Around Illness." In How Do Families Cope with Chronic Illness?, ed. R. Cole and D. Reiss. Hillsdale, NJ: Lawrence Erlbaum.
Rolland, J. (1994). Families, Illness, and Disability: An Integrative Treatment Model. New York: Basic Books.
Sabbeth, B., and Leventhal, J. (1984). "Marital Adjustment to Chronic Childhood Illness: A Critique of the Literature." Pediatrics 73:762–768.
Santelli, B.; Turnbull, A.; Lerner, E.; and Marquis, J. (1993). "Parent-to-Parent Programs." In Families, Disability, and Empowerment, ed. G. Singer and L. Powers. Baltimore: Paul H. Brookes.
Singer. G.; Irvin, L.; Irvine, B.; Hawkins, N.; Hegreness, J.; and Jackson, R. (1993). "Helping Families Adapt Positively to Disability." In Families, Disability, and Empowerment, ed. G. Singer and L. Powers. Baltimore: Paul H. Brookes.
Singer, G., and Powers, L., eds. (1993). Families, Disability, and Empowerment. Baltimore: Paul H. Brookes.
Singhi, P.; Goyal, L.; Pershad, D.; Singhi, S.; and Walia, B. (1990). "Psychosocial Problems in Families of Disabled Children." British Journal of Medical Psychology 63: 173–182.
Sloper, P., and Turner, S. (1992). "Service Needs of Families of Children with Severe Physical Disability." Child: Care, Health, and Development 18:259–282.
Spinetta, J.; Murphy, J.; Vik, P.; and Day, J. (1988). "Long- Term Adjustment in Families of Children with Cancer." Journal of Psychosocial Oncology 6:179–191.
Stainton, T., and Besser, H. (1998). "The Positive Impact of Children with an Intellectual Disability on the Family." Journal of Intellectual & Developmental Disability 23:57–70.
Stein, R. E. K.; Bauman, L. J.; Westbrook, L. E.; Coupey, S. M.; and Ireys, H. T. (1993). "Framework for Identifying Children Who Have Chronic Conditions: The Case for a New Definition." The Journal of Pediatrics 122:342–347.
Steinglass, P., and Horan, M. (1987). "Families and Chronic Medical Illness." Journal of Psychotherapy and the Family 3:127–142.
Steinglass, P.; Temple, S.; Lisman, S.; and Reiss, D. (1982). "Coping with Spinal Cord Injury: The Family Perspective." General Hospital Psychiatry 4:259–264.
Stone, R., and Kemper, P. (1989). "Spouses and Children of Disabled Elders: How Large a Constituency for Long-Term Care Reform?" Milbank Quarterly 67:485–506.
Stoneman, Z., and Berman, P., eds. (1993). The Effects of Mental Retardation, Disability, and Illness on Sibling Relationships: Research Issues and Challenges. Baltimore: Brookes.
Taanila, A.; Kokkonen, J.; and Jarvelin, M. (1996). "The Long-term Effects of Children's Early-Onset Disability on Marital Relationships." Developmental Medicine and Child Neurology 38:567–577.
Thompson, R.; Gustafson, K.; Hamlett, K.; and Spock, A. (1992). "Stress, Coping, and Family Functioning in the Psychological Adjustment of Mothers of Children and Adolescents with Cystic Fibrosis." Journal of Pediatric Psychology 17:573–585.
Turnbull, A.; Patterson, J.; Behr, S.; Murphy, D.; Marquis, J.; and Blue-Banning, M., eds. (1993). Cognitive Coping, Families, and Disability. Baltimore: Paul H. Brookes.
Turnbull, A. P., and Turnbull, H. R. (1986). Families, Professionals, and Exceptionalities: A Special Partnership. Columbus, OH: Charles E. Merrill.
Vance, J.; Fazan, L.; and Satterwhite, B. (1980). "Effects of Nephrotic Syndrome on the Family: A Controlled Study." Pediatrics 65:948–956.
Varni, J., and Setoguchi, Y. (1993). "Effects of Parental Adjustment on the Adaptation of Children with Congenital or Acquired Limb Deficiencies." Developmental and Behavioral Pediatrics 14:13–20.
Varni, J., and Wallender, J. (1988). "Pediatric Chronic Disabilities: Hemophilia and Spina Bifida as Examples." In Handbook of Pediatric Psychology, ed. D. Routh. New York: Guilford.
Venters, M. (1981). "Familial Coping with Chronic and Severe Childhood Illness: The Case of Cystic Fibrosis." Social Science and Medicine 15A:948–956.
Walker, B., and Singer, G. (1993). "Improving Collaborative Communication Between Professionals and Parents." In Families, Disability, and Empowerment, ed.
G. Singer and L. Powers. Baltimore: Paul H. Brookes.
Watson, S.; Henggeler, S.; and Whelan, J. (1990). "Family Functioning and the Social Adaptation of Hearing-Impaired Youths." Journal of Abnormal Child Psychology 18:143–163.
Yau, M., and Li-Tsang, C. (1999). "Adjustment and Adaptation in Parents of Children with Developmental Disability in Two-Parent Families: A Review of the Characteristics and Attributes." British Journal of Developmental Disabilities 45:38–51.
JOÄN M. PATTERSON (1995)
BIBLIOGRAPHY REVISED BY
JAMES J. PONZETTI, JR.
Additional topics
Marriage and Family EncyclopediaFamily Health IssuesDisabilities - Definition And Prevalence, Impact Of Disabilities On Families, Family Response To Disabilities, Programs And Interventions