Social Work in Health Care
ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
The Impact of a Fmaily-Centered Case Management Approach Maureen O. Marcenko PhD & Linda K. Smith PhD To cite this article: Maureen O. Marcenko PhD & Linda K. Smith PhD (1992) The Impact of a Fmaily-Centered Case Management Approach, Social Work in Health Care, 17:1, 87-100, DOI: 10.1300/J010v17n01_06 To link to this article: http://dx.doi.org/10.1300/J010v17n01_06
Published online: 26 Oct 2008.
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The Impact of a Family-Centered Case Management Approach Maureen 0.Marcenko, PhD Linda K. Smith, PhD
ABSTRACT. Two urban programs of family-centered case management services were established for families of children with both a developmental disability and a chronic health condition. These are children who present siWcant caregiving demands due to the long-term and severe nature of their disabilities. Thirty-two mothers were interviewed within the family's first month in the project and reinterviewed approximatelyone year later. The results indicate that more families received respite care, nursing services, training in the care of the child, educational services and transportation to school at follow-up than had been receiving those services at baseline. However, families still indicated high service needs for recreational activities, life planning, regular day care, legal services, and speech therapy at follow-up. Mothers indicated that program services were helpful in obtaining services, financing, information, support, and Maureen 0.Marcenko is Assistant Professor in the Department of Mental Health Sciences at Hahnemann University, 1427 Vine Street, MS 988, Philadelphia, PA 19102-1192. Linda K. Smith is Assistant Director of Epidemiology at the Michigan Cancer Foundation, Detroit, MI. This article is based on research supported by a grant from the Michigan Developmental Disabilities Council. The views expressed herein are solely those of the authors and do not represent the opinions or policy of any agency of the State of Michigan. We appreciate the cooperation of the agencies which participated in this evaluation and particularly the input of social workers Joan Blough and Sharon Dietrich. This research was conducted while Maureen Marcenko was Assistant Professor, School of Social Work, Wayne State University and Linda Smith was Research Coordinator at the Developmental Disabilities Institute, Wayne State University. Social Work in Health Care, Vol. 17(1) 1992 O 1992 by The Haworth F'ress, Inc. All rights reserved.
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advocacy. Although maternal life satisfaction improved with program participation, non-handicapped siblings continued to have difficulties coping. The model employed is described and the practice and policy implications of the findings discussed. Public policy and practice have moved away from institutional care to family care of children with developmental disabilities and special health care needs. At the same time, advances in medical technology have made it possible for many children with severe disabilities or health problems to survive to young adulthood and beyond. These trends have converged to create a situation where families are caring for their children with serious debilitating conditions, often through adulthood. Research into the impact upon the family -caring for a child with developmental disabilities or a chronic health condition is extensive and spans several decades. The findings of earlier researchers are similar to those of many current researchers, demonstrating the persistence and pervasiveness of the stress families experience, and the small gains made in relieving their burden. For instance, in 1962 Olshansky described the chronic sorrow families experience when they have a child with developmental disabilities. Almost twenty years later, Wikler, Wasow, and Hatfield (1981) revisited this topic and established its relevancy for families today. In one of the f i s t comprehensive studies of family stress, Schonell and Watts (1956) found that a third of mothers said they had no help of any kind with their children and 36% stated the desire to call upon someone occasionally to gain relief. Twentyeight percent of the families had moved to accommodate the educational, medical, and special environmental needs of the child, and 52% found it impossible to indulge in daily social activities. The most pressing worry for 27% of mothers was future care for their child once the parents were no longer able. Subsequent researchers have documented these findings and studied other aspects of family life. These researchers have provided substantial evidence for the social isolation, stress, financial strain, and dficulties conducting normal family activities families experience (Beckman-Bell, 1981; English & Olson, 1978; Kazak & Marvin, 1984; Kom, Chess & Femandez, 1978; Marcenko & Meyers, 1991). There have been strides in addressing the needs of individuals with disabilities through legislation such as mandatory special education (P.L. 94-142, 1975) and guaranteed comprehensive A d coordinated programs of vocational rehabilitation (Rehabilitation Acts of 1973 and 19781. Farnily support services have not kept a similar pace, despite the fact that
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most persons with developmental disabilities live with their families (Bruinicks, Hauber, & Kudla, 1979). In 1975, only four states provided support to families with a member who had a disability. By 1984, 22 states reported programs of support and/or cash subsidies to this population of families, although many of these programs were limited in scope (Bates, 1985). CASE MANAGEMENT
Families of children with developmental disabilities and chronic health conditions require a multiplicity of services across the life cycle. However, families must negotiate a mass of services which is characterized by diversity and fragmentation(Hobbs, Perrin, & Ireys, 1985). Case management has come to be the accepted method for accessing, coordinating, and monitoring services for persons with multiple service needs. The initial goal of case management services is to identify and fulfill a spectrum of family needs, and over time to respond to the changing and emerging needs of families (Moxley, 1989). Although case management services for children with special needs and their families has intuitive appeal, there is a dearth of research regarding its efficacy for this population. One exception is the work of Singer, Irvin, Irvine and Hawkins (1989). In this study, families of children with developmental disabilities were randomly assigned to a modest service group consisting of respite care and case management or a group which received an intensive interventionconsistingof stress management, parenting skills training, support groups, and additionalcommunity-based respite care. Mothers in the intensive group showed significant improvement on measures of depression and anxiety. These findings suggest that comprehensive services provided directly to families can be more efficacious than case management alone. PURPOSE OF THE STUDY
The purpose of this study was to evaluate the impact of a family-cenfor families caring for children with both tered c&e management a develo~mentaldisabilitv and a chronic health condition. These are children b h o present sighcant caregiving challenges to their families due to the often serious nature of their disabilities, their possible reliance on medical technology, and the chronicity of their conditions. Program
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impact was measured by access to community based family support services, satisfaction with project services, maternal l i e satisfaction, and the coping ability of non-handicapped siblings. Although not considered indicators of program impact, coping mechanisms of mothers and nonhandicapped siblings and mothers' perceptions about how the presence of a child with handicaps influenced the marital relationship, were also examined. SERVICE MODEL
Two community mental health agencies located in separate urban Michigan counties were funded as demonstration projects to develop family-centered case management programs. The projects were philosophically grounded in a familycentered approach which recognizes the family as the constant in the child's life and thus emphasizes parent/professional collaboration, and the responsiveness of the service system to family needs (Family Resource Coalition Report, 1988). At a progranunatic level, the projects were based on a services management model which is defmed as a life-long, goal oriented process for planning and coordinating the range of programs and supports needed by families to assure service accessibility, continuity, quality of care, and responsiveness. The goal of services management is to maximize the potential of persons with disabilities and their families for independence, productivity, and community integration. Functions include, but are not limited to: outreach, coordination, brokering, monitoring, advocating, training, and interdisciplinary team planning (Michigan Developmental Disabilities Council, undated). The projects developed models of service for families of children with high care needs by bringing together a familycentered philosophy with a services management approach. Staffmg of the projects consisted of masters-prepared social workers, in collaboration with other disciplines such as nursing, medicine, and education as appropriate. The major activities of project staff included working with parent groups, arranging support services, obtaining financing for services, counseling, and administration. Families were determined eligible for the project if they had a child with both a developmental disability and a significant health problem. A plan of service was developed collaboratively with each family based on input from families, project social workers, and other professionals involved with the family such as the physician, supervising nurse from the
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K. Smith
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home health agency, physical and occupational therapists, and school personnel. Service plans were reassessed quarterly. The services were family focused, taking into account the needs of all family members. However, it was the experience of staff that mothers were usually responsible for planning and arranging services for the family. Thus, the primary contact was generally with the mother. In an attempt to incorporate the entire family, social workers were available during evening hours to accommodate the work and school schedules of parents and children. Interventions were conducted with families in their homes, the hospital, schools, and at the social service agency. As the projects evolved over a three year period, social workers report that they increased their emphasis on strategies designed to empower families. This took the form of parent support groups, informational and skill building sessions for parents so that they could advocate on their own behalf, and the use of parents as paid consultants to assist project staff in developing resources and supporting other families. According to project staff, the integration of parents into the service delivery process promoted a sense of cooperation and joint responsibility between staff and families. Project staff also indicated that they often developed a mutually supportive relationship with families instead of an adversarial one. and this in turn reduced staff stress.
METHODOLOGY Subjects Subjects were 32 families with children who had both a developmental disability and a significant health problem and who were referred to one of the two demonstration projects. Families were referred by hospital staff, community agencies, other families, or self-referred. There were no signifkant differences between families served by the two agencies in income, marital status, mothers' education, or age, race and sex of the child. Furthermore, the service models were similar in design and approach. Therefore, the two groups of families were combiied for the purposes of analysis. The demographic characteristics of the sample are presented in Table 1. The developmental disability most frequently represented among the children was mental retardation, followed by cerebral palsy. The medical conditions of the children were varied and included mucopolysaccharidosis, diaphragmatic hernia, and bronchial pulmonary dysplasia. In terms
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Table I
Sex of Child Male Female
,
Race of Child White African American Latino Aqe of Child 5 3 years 4 to 6 7 to 9 10 to 12 13 to 17 18 to 26 Total Family Income 5 10,000 ' 10,001 to 20,000 20,001 to 30,000 30,001 to 40,000 > 40,000
I
Marital Status Married single
Education of Mother < High school High school some college University graduate -
-
.
. .
-
-
--
..- . -
# of hours Mother 5 10 11 to 15 16 to 30 31 to 40
--
.-
Employment of Mother , Yes NO
, employed
35 1
65 11 22 22 44
Employment' of Spouse ( Yes NO # of hours Spouse employedfwk. 5 40 4 1 to 50
51 t o 69
52 17 17
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of the medical care required for the child, the mean number of doctors seen by the children was 5 and the range from 1 to 15. Only 5% of the children did not take any regular medications, with a mean of 3 medications and a range from 0 to 10. Forty percent of the children required special feeding equipment such as gastrostomy tubes or naso-gastric tubes, 29% u s 4 respirators, 24% required suctioning, and 21% had cardiac or apnea monitors. Over half of the children (56%) needed attention several times a night after parents were in bed. The type of attention ranged from adjusting equipment, repositioning, checking on breathing and seizure activity to cuddling and calming the child down. Approximately 90% of the families indicated that they had some type of health insurance for their child, but over a third indicated that this insurance was inadequate.
In order to measure how social workers allocated their time, they were asked during two typical months to estimate the percentage of time spent on each of their primary functions. Typical month was defined as a month in which there was no significant departure from the usual schedule of the social worker such as vacation or maior holiday. The ~rimarv functions included working with parent groups, arrangGg for support services, obtaining financing, counseling and administration. A pre- and post-test design was utilized to evaluate program impact. The child's primary caregiver, who in all cases was the mother, was interviewed using a semi-structured questionnaire within the first month in the project and reinterviewed approximately one year later. The initial interview was completed by project social workers and the follow-up interview was completed by an interviewer who was hired and trained by the evaluators. An interviewer independent of the service program was used at follow-up so that families would feel free to give their opinions about the program. The intake instrument consisted of the following: basic socio-demographic data; questions regarding the medical condition of the child and the caregiving demands; questions about service needs and use; items related to family stress and coping and maternal life satisfaction; the family's expectations of the program; and data regarding service utilization and satisfaction. The follow-up instrument was similar to the intake, with the addition of specific questions about the helpfulness of the program. Qualitative data regarding the strategies social workers employed to assist families were collected through summaries describing case activity each quarter.
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All quantitative data were entered on computer using SPSS-X and crosstabs and t-tests were performed, depending on the level of the data. Qualitative responses were grouped according to theme and described.
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Findings
Regarding the allocation of time, Figure 1 indicates that social workers devoted the majority of their efforts to working with parent groups, obtaining financing, and arranging for support services. Counseling was a relatively minor aspect of the overall programs. This was a result of two factors. First, the children had such intensive care needs that social workers spent the majority of their time focusing on in-home support such as nursing and respite and obtaining financing for these services. Second, families were referred for counseling if there was a need which could not be met by the social workers given the constraints on their time and the other needs of the family. Service needs assessment and changes in service use were focal points of the impact evaluation. Table 2 shows services for which there was an increase in use between intake and follow-up. The data are broken down by whether or not the service was used; if used, by satisfaction; and if not used, by whether it was needed or not needed. The most impressive increases in service use were in regular respite care and home nursing.
_W_Y
Counselingv
-
_/ Work w/ Parent -- - Group -
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Table 2 Increases in Service Use Between Intake and Follow-UD
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USED
Satisfied
service
Not satisfied
%
Regular respite care in home
32' 772
Home nursing care
36 61
Education services
.
Routine medica1,service
= =
Intake Follow-up
%
Not Needed %
Needed %
11 17
139 3
7 13
14 16
59 84
16 3
9
63 68
3
7
20 8
26 33
15 15
11 7
48 44
78 100
13 0
3
6
'
'
18 3 36 10 8 16 7
7
!
Training in care of child Transportation to school
'
NOT USED
'
13 16
t
Increases were also noted in the frequency with which families used education services, trainiig in the care of the child, transportation to school, and routine medical service, although these changes were small. Also of interest are the service needs which persist regardless of the intervention. Table 3 shows that families still indicated a high level of need for family and child centered recreational activities, life planning services, legal services, regular day care, and speech therapy. Mothers were asked about the ways in which they were helped by project staff. They identified greater access to services, assistance with financing of services, opportunities to network with other families, emotional support from other families and staff, information about care of the child, and the development of advocacy skills. One mother summed it up when she said, "Our family became stronger and,we don't feel like we're alone."
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Table 3 ._ _-._I Bish Service Needs at Intake and ~ollou-UD
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USED
service
NOT USED
satiefie&
Not satistied
Needed
Not Neede
%
%
%
%
61 48
25 33 29 43
Recreation activities (family)
111 1 5 ~
4 4
Life planning services (child)
14 3
0
57 43
Recreation activities (child)
7 17
0 3
46 40
0
'
..-
Legal services Regular day care (child) Speech therapy (child)
' == Follow-up Intake -
Mothers were also asked to rate satisfaction with their current life situation at both intake and follow-up. Maternal ratings were measured on a ten point L i e r t scale from (1) "worst possible life" to (10) "best possible life." Maternal life satisfaction sigmcantly increased from 5.39 at intake to 6.25 at follow-up (t (27) = 2.41, p < .02), indicating that mothers were generally more satisfied with their life situation at followup than they were at intake. The coping mechanisms mothers utilized were determined by the use of a qualitative measure. Mothers were asked in an open-ended format "What helps you cope with the demands of your child's care?" Their responses ranged from the love that they felt for their child, such as: "a funny, hard-working, loving handicapped son"; "loving her, wanting her home, and being her mom"; to the support they had from others: "a great husband and wonderful sons"; talking to understanding people"; to informal and formal suppons: "being respected for my decisions and
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input regarding my son's care"; "nursing care and keeping busy"; to their faith: "prayer and my relationship with Jesus." As a measure of the coping ability of non-handicapped siblings, mothers were asked on a five point Likert type scale from (1) "excellently" to (5) "poorly" how well their non-handicapped children wped with the demands of the child with handicaps. There was a slight decrease in sibling coping between intake (M = 2.41) and follow-up (M = 2.77), although the change was not significant. (Lower scores are more positive.) In an open-ended format, mothers were asked to discuss the ways in which their other children cope with the demands of the child with handicaps. In comparing open-ended responses at intake and follow-up, in no case did mothers report an improvement in coping on the part of nonhandicapped siblings. Illustrative of their responses are the following quotes: "We have to drag both kids to the hospital and they don't like it. They can't participate in school events." "Our youngest one is not talking, has temper tantrums, is not sleeping and doesn't want to leave us." "They feel frightened and upset when our handicapped child is having problems." Another measure of the impact of caring for a child with special needs is the inhence felt in terms of the marital relationship. When asked about how their marriages had been affected, mothers were equally split between positive and negative responses. Positive comments included: "It has made us a stronger, closer, more tired couple." "My husband and I are now more open with our emotions." "It has made us rely on each other." Other mothers spoke of the strain on their marriage: "We're finding it real stressful; it's not a normal Life; we have no privacy because we share our lives with too many people." "The illness has caused a great strain and magnified other problems." DISCUSSION This study is limited in that there was no control group therefore it is not known whether families would have experienced the same gains without benefit of the case management services. Furthermore, generalizations are limited by the fact that families were referred for or sought out the services of the projects, resulting in bias due to self-selection. Despite these limitations, it appears that one of the major strengths of the family-centered case management projects was in their ability to access certain services for families. The results show that families more often received respite care, nursing services, training in the care of the
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child, educational services, and transportation to school. However, families continued to experience high service needs for recreational activities, life planning, regular day care, legal services, and speech therapy. These results indicate that the projects are limited by the services they can piece together from their communities. Although there has been an increased emphasis on family support services, this generally translates to respite care, nursing services, and training in the care of the child at the service system level. Services which are not specialized but are more likely to be part of the general supports provided by the community, such as recreation or regular day care, were not accessible to families of children with disabilities and health problems. Another major concern raised by both families and social workers was problems with health insurance. Although the majority of families had some type of health insurance, over a third felt that their insurance was inadequate. Health insurance problems included differing interpretations of covered services between families and insurance companies; a bias towards funding of inpatient as opposed to family based care; a lengthy and tedious process for the application of special federal programs to fund family care. The difficulties obtaining funding for services were borne out in the amount of time social workers devoted to this function. In addition to spending 20% of their time arranging services, social workers spent another 25% of their time arranging for fmancing. Furthermore, social workers reported that this did not change with the family's longevity in the program. Social workers found themselves continually working on financing because of reapplication and ongoing documentation requirements. T i e spent on attaining funding and arranging services detracts from the amount of time and energy social workers and families can focus on other concerns. This may in part explain why non-handicapped siblings did not seen to fare any better as a result of the family's involvement with the project. When mothers were asked how well their non-handicapped children cope with the caregiving demands of the child with handicaps, there was no signif~cantchange betweenintake and follow-up. Openendedresponses confirmed the difficulties non-handicapped siblings experience, including problems sleeping, anger, fear, resentment, and jealousy. Other familycentered case management programs should consider specific approaches to assist non-handicapped siblings such as support groups. Matemal life satisfaction signif~cantlyimproved between baseline and one year follow-up. This may be related to the many benefits such as access to services, networking with other families, and advocacy, which mothers derived from the projects.
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Although mothers overwhelming evaluated the projects positively, project staff were limited by systemic constraints outside of their control. 'Ihese included lack of some services in the community, problems accessing non-specialized services, and difficulties with insurance. In order to provide meaningful familycentered care, it is necessary to address these issues on a policy level. Similar projects in other communities will experience the same - l i t a t i o n s unless policies are established to increase availability of and access to services. Shides have been made in the family support arena, but it is apparent from the results of this study that there is much that still needs to be done if family burden is to be reduced. RECOMMENDATIONS
The findings indicate that family-centered case management services are beneficial to families particularly in accessing existing services and increasing maternal life satisfaction. Policy and program recornmendations to social workers concerned with this population of children and families include: 1. Develop and implement family-centered case management services to assure that families are linked with existing services. 2. Increase community capacity to integrate children with special needs and their families into generic services such as day care and recreation. 3. Simplify the application and financing procedures for family support services. 4. Develop support servicesfor siblingsof children with special needs. 5. Support a universal program of health care or health insurance which favors reimbursement for home care and is administratively simple. REFERENCES Bates, M.V.(1985). State family supportlcash subsidy programs. Wisconsin Council on Develo~mentalDisabilities. Bruininks, R.H., ~aubkr,F.A. & Kudla, M.J.(1979). National survey of community residential facilities: A profile of residences and facilities in 1977. M i e ap&, MN,university of &esoia. English R.W. & Olson, K.K. (1978). Parenting handicapped children: Their
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earliest experiences. The Journal for Special Education, 15(1), 10-17 and 15(2), 169-186. Family Resource Coalition Report (1988). Family Resource Coalition Hobbs, N., Perrin, J.M., & keys, H.T. (1985). Chronically ill children and their families. San Francisco: Jossey-Bass. Kazak, A.E. & Marvin, R.S. (1984). Differences, difficulties and adaptation: Stress and social networks in families with a handicapped child Family Relations. 33. 67-77. Kom, S.I., Chess, S., & Femandez, P. (1978). The impact of children's physical handicaps on marital quality and family interaction. In R. M. Lerner and Y. B. Spanier (Eds.), Child influences on marital and family interaction: A life span perspective. @p. 299-326). New York: Academic Press. Marcenko, M.O. & Meyers, J.C. (1991). Mothers of children with developmental disabilities: Who shares the burden? Family Relations, 40, 186-190. Michigan Developmental Disabilities Council, Lansing, MI. (undated). Moxley, D.P. (1989). The practice of case management. Newbury Park: Sage. Olshansky, S. (1962). Chronic sorrow: Aresponse to having a mentally defective child. Social Casework. 43, 190-193. Paul, J.L. & Beckman-Bell, P. (1981). Parent perspectives. In J. Paul (Ed), Understanding and working with parents of children with special needs. @p. 119-153). New York: Holt, Reinhart, and W i t o n . Schonell, F.J. & Watts, B.H. (1956). A fust survey of the effects of a subnormal child on the family unit. American Journal of Mental Deficiency. 61.210-219. Singer, G.H., Irvin, L.K.,Irvine, B., Hawkins, N. (1989). Evaluation of community-based support services for families of persons with developmentaldisabilities. Journal of the Association for Persons with Severe Hondicaps, 14,312323. W i e r , L.,Wasow, M., & Hatfield, E. (1981). Chronic sorrow revisited: Parent vs. professional depiction of the adjustment of parents of mentally retarded children American Journal of Orthopsychiatry. 51, 63-70.
ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
The Impact of a Fmaily-Centered Case Management Approach Maureen O. Marcenko PhD & Linda K. Smith PhD To cite this article: Maureen O. Marcenko PhD & Linda K. Smith PhD (1992) The Impact of a Fmaily-Centered Case Management Approach, Social Work in Health Care, 17:1, 87-100, DOI: 10.1300/J010v17n01_06 To link to this article: http://dx.doi.org/10.1300/J010v17n01_06
Published online: 26 Oct 2008.
Submit your article to this journal
Article views: 55
View related articles
Citing articles: 9 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=wshc20 Download by: [University of Cambridge]
Date: 07 November 2015, At: 16:50
Downloaded by [University of Cambridge] at 16:50 07 November 2015
The Impact of a Family-Centered Case Management Approach Maureen 0.Marcenko, PhD Linda K. Smith, PhD
ABSTRACT. Two urban programs of family-centered case management services were established for families of children with both a developmental disability and a chronic health condition. These are children who present siWcant caregiving demands due to the long-term and severe nature of their disabilities. Thirty-two mothers were interviewed within the family's first month in the project and reinterviewed approximatelyone year later. The results indicate that more families received respite care, nursing services, training in the care of the child, educational services and transportation to school at follow-up than had been receiving those services at baseline. However, families still indicated high service needs for recreational activities, life planning, regular day care, legal services, and speech therapy at follow-up. Mothers indicated that program services were helpful in obtaining services, financing, information, support, and Maureen 0.Marcenko is Assistant Professor in the Department of Mental Health Sciences at Hahnemann University, 1427 Vine Street, MS 988, Philadelphia, PA 19102-1192. Linda K. Smith is Assistant Director of Epidemiology at the Michigan Cancer Foundation, Detroit, MI. This article is based on research supported by a grant from the Michigan Developmental Disabilities Council. The views expressed herein are solely those of the authors and do not represent the opinions or policy of any agency of the State of Michigan. We appreciate the cooperation of the agencies which participated in this evaluation and particularly the input of social workers Joan Blough and Sharon Dietrich. This research was conducted while Maureen Marcenko was Assistant Professor, School of Social Work, Wayne State University and Linda Smith was Research Coordinator at the Developmental Disabilities Institute, Wayne State University. Social Work in Health Care, Vol. 17(1) 1992 O 1992 by The Haworth F'ress, Inc. All rights reserved.
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advocacy. Although maternal life satisfaction improved with program participation, non-handicapped siblings continued to have difficulties coping. The model employed is described and the practice and policy implications of the findings discussed. Public policy and practice have moved away from institutional care to family care of children with developmental disabilities and special health care needs. At the same time, advances in medical technology have made it possible for many children with severe disabilities or health problems to survive to young adulthood and beyond. These trends have converged to create a situation where families are caring for their children with serious debilitating conditions, often through adulthood. Research into the impact upon the family -caring for a child with developmental disabilities or a chronic health condition is extensive and spans several decades. The findings of earlier researchers are similar to those of many current researchers, demonstrating the persistence and pervasiveness of the stress families experience, and the small gains made in relieving their burden. For instance, in 1962 Olshansky described the chronic sorrow families experience when they have a child with developmental disabilities. Almost twenty years later, Wikler, Wasow, and Hatfield (1981) revisited this topic and established its relevancy for families today. In one of the f i s t comprehensive studies of family stress, Schonell and Watts (1956) found that a third of mothers said they had no help of any kind with their children and 36% stated the desire to call upon someone occasionally to gain relief. Twentyeight percent of the families had moved to accommodate the educational, medical, and special environmental needs of the child, and 52% found it impossible to indulge in daily social activities. The most pressing worry for 27% of mothers was future care for their child once the parents were no longer able. Subsequent researchers have documented these findings and studied other aspects of family life. These researchers have provided substantial evidence for the social isolation, stress, financial strain, and dficulties conducting normal family activities families experience (Beckman-Bell, 1981; English & Olson, 1978; Kazak & Marvin, 1984; Kom, Chess & Femandez, 1978; Marcenko & Meyers, 1991). There have been strides in addressing the needs of individuals with disabilities through legislation such as mandatory special education (P.L. 94-142, 1975) and guaranteed comprehensive A d coordinated programs of vocational rehabilitation (Rehabilitation Acts of 1973 and 19781. Farnily support services have not kept a similar pace, despite the fact that
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most persons with developmental disabilities live with their families (Bruinicks, Hauber, & Kudla, 1979). In 1975, only four states provided support to families with a member who had a disability. By 1984, 22 states reported programs of support and/or cash subsidies to this population of families, although many of these programs were limited in scope (Bates, 1985). CASE MANAGEMENT
Families of children with developmental disabilities and chronic health conditions require a multiplicity of services across the life cycle. However, families must negotiate a mass of services which is characterized by diversity and fragmentation(Hobbs, Perrin, & Ireys, 1985). Case management has come to be the accepted method for accessing, coordinating, and monitoring services for persons with multiple service needs. The initial goal of case management services is to identify and fulfill a spectrum of family needs, and over time to respond to the changing and emerging needs of families (Moxley, 1989). Although case management services for children with special needs and their families has intuitive appeal, there is a dearth of research regarding its efficacy for this population. One exception is the work of Singer, Irvin, Irvine and Hawkins (1989). In this study, families of children with developmental disabilities were randomly assigned to a modest service group consisting of respite care and case management or a group which received an intensive interventionconsistingof stress management, parenting skills training, support groups, and additionalcommunity-based respite care. Mothers in the intensive group showed significant improvement on measures of depression and anxiety. These findings suggest that comprehensive services provided directly to families can be more efficacious than case management alone. PURPOSE OF THE STUDY
The purpose of this study was to evaluate the impact of a family-cenfor families caring for children with both tered c&e management a develo~mentaldisabilitv and a chronic health condition. These are children b h o present sighcant caregiving challenges to their families due to the often serious nature of their disabilities, their possible reliance on medical technology, and the chronicity of their conditions. Program
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impact was measured by access to community based family support services, satisfaction with project services, maternal l i e satisfaction, and the coping ability of non-handicapped siblings. Although not considered indicators of program impact, coping mechanisms of mothers and nonhandicapped siblings and mothers' perceptions about how the presence of a child with handicaps influenced the marital relationship, were also examined. SERVICE MODEL
Two community mental health agencies located in separate urban Michigan counties were funded as demonstration projects to develop family-centered case management programs. The projects were philosophically grounded in a familycentered approach which recognizes the family as the constant in the child's life and thus emphasizes parent/professional collaboration, and the responsiveness of the service system to family needs (Family Resource Coalition Report, 1988). At a progranunatic level, the projects were based on a services management model which is defmed as a life-long, goal oriented process for planning and coordinating the range of programs and supports needed by families to assure service accessibility, continuity, quality of care, and responsiveness. The goal of services management is to maximize the potential of persons with disabilities and their families for independence, productivity, and community integration. Functions include, but are not limited to: outreach, coordination, brokering, monitoring, advocating, training, and interdisciplinary team planning (Michigan Developmental Disabilities Council, undated). The projects developed models of service for families of children with high care needs by bringing together a familycentered philosophy with a services management approach. Staffmg of the projects consisted of masters-prepared social workers, in collaboration with other disciplines such as nursing, medicine, and education as appropriate. The major activities of project staff included working with parent groups, arranging support services, obtaining financing for services, counseling, and administration. Families were determined eligible for the project if they had a child with both a developmental disability and a significant health problem. A plan of service was developed collaboratively with each family based on input from families, project social workers, and other professionals involved with the family such as the physician, supervising nurse from the
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home health agency, physical and occupational therapists, and school personnel. Service plans were reassessed quarterly. The services were family focused, taking into account the needs of all family members. However, it was the experience of staff that mothers were usually responsible for planning and arranging services for the family. Thus, the primary contact was generally with the mother. In an attempt to incorporate the entire family, social workers were available during evening hours to accommodate the work and school schedules of parents and children. Interventions were conducted with families in their homes, the hospital, schools, and at the social service agency. As the projects evolved over a three year period, social workers report that they increased their emphasis on strategies designed to empower families. This took the form of parent support groups, informational and skill building sessions for parents so that they could advocate on their own behalf, and the use of parents as paid consultants to assist project staff in developing resources and supporting other families. According to project staff, the integration of parents into the service delivery process promoted a sense of cooperation and joint responsibility between staff and families. Project staff also indicated that they often developed a mutually supportive relationship with families instead of an adversarial one. and this in turn reduced staff stress.
METHODOLOGY Subjects Subjects were 32 families with children who had both a developmental disability and a significant health problem and who were referred to one of the two demonstration projects. Families were referred by hospital staff, community agencies, other families, or self-referred. There were no signifkant differences between families served by the two agencies in income, marital status, mothers' education, or age, race and sex of the child. Furthermore, the service models were similar in design and approach. Therefore, the two groups of families were combiied for the purposes of analysis. The demographic characteristics of the sample are presented in Table 1. The developmental disability most frequently represented among the children was mental retardation, followed by cerebral palsy. The medical conditions of the children were varied and included mucopolysaccharidosis, diaphragmatic hernia, and bronchial pulmonary dysplasia. In terms
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Table I
Sex of Child Male Female
,
Race of Child White African American Latino Aqe of Child 5 3 years 4 to 6 7 to 9 10 to 12 13 to 17 18 to 26 Total Family Income 5 10,000 ' 10,001 to 20,000 20,001 to 30,000 30,001 to 40,000 > 40,000
I
Marital Status Married single
Education of Mother < High school High school some college University graduate -
-
.
. .
-
-
--
..- . -
# of hours Mother 5 10 11 to 15 16 to 30 31 to 40
--
.-
Employment of Mother , Yes NO
, employed
35 1
65 11 22 22 44
Employment' of Spouse ( Yes NO # of hours Spouse employedfwk. 5 40 4 1 to 50
51 t o 69
52 17 17
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of the medical care required for the child, the mean number of doctors seen by the children was 5 and the range from 1 to 15. Only 5% of the children did not take any regular medications, with a mean of 3 medications and a range from 0 to 10. Forty percent of the children required special feeding equipment such as gastrostomy tubes or naso-gastric tubes, 29% u s 4 respirators, 24% required suctioning, and 21% had cardiac or apnea monitors. Over half of the children (56%) needed attention several times a night after parents were in bed. The type of attention ranged from adjusting equipment, repositioning, checking on breathing and seizure activity to cuddling and calming the child down. Approximately 90% of the families indicated that they had some type of health insurance for their child, but over a third indicated that this insurance was inadequate.
In order to measure how social workers allocated their time, they were asked during two typical months to estimate the percentage of time spent on each of their primary functions. Typical month was defined as a month in which there was no significant departure from the usual schedule of the social worker such as vacation or maior holiday. The ~rimarv functions included working with parent groups, arrangGg for support services, obtaining financing, counseling and administration. A pre- and post-test design was utilized to evaluate program impact. The child's primary caregiver, who in all cases was the mother, was interviewed using a semi-structured questionnaire within the first month in the project and reinterviewed approximately one year later. The initial interview was completed by project social workers and the follow-up interview was completed by an interviewer who was hired and trained by the evaluators. An interviewer independent of the service program was used at follow-up so that families would feel free to give their opinions about the program. The intake instrument consisted of the following: basic socio-demographic data; questions regarding the medical condition of the child and the caregiving demands; questions about service needs and use; items related to family stress and coping and maternal life satisfaction; the family's expectations of the program; and data regarding service utilization and satisfaction. The follow-up instrument was similar to the intake, with the addition of specific questions about the helpfulness of the program. Qualitative data regarding the strategies social workers employed to assist families were collected through summaries describing case activity each quarter.
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All quantitative data were entered on computer using SPSS-X and crosstabs and t-tests were performed, depending on the level of the data. Qualitative responses were grouped according to theme and described.
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Findings
Regarding the allocation of time, Figure 1 indicates that social workers devoted the majority of their efforts to working with parent groups, obtaining financing, and arranging for support services. Counseling was a relatively minor aspect of the overall programs. This was a result of two factors. First, the children had such intensive care needs that social workers spent the majority of their time focusing on in-home support such as nursing and respite and obtaining financing for these services. Second, families were referred for counseling if there was a need which could not be met by the social workers given the constraints on their time and the other needs of the family. Service needs assessment and changes in service use were focal points of the impact evaluation. Table 2 shows services for which there was an increase in use between intake and follow-up. The data are broken down by whether or not the service was used; if used, by satisfaction; and if not used, by whether it was needed or not needed. The most impressive increases in service use were in regular respite care and home nursing.
_W_Y
Counselingv
-
_/ Work w/ Parent -- - Group -
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Table 2 Increases in Service Use Between Intake and Follow-UD
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USED
Satisfied
service
Not satisfied
%
Regular respite care in home
32' 772
Home nursing care
36 61
Education services
.
Routine medica1,service
= =
Intake Follow-up
%
Not Needed %
Needed %
11 17
139 3
7 13
14 16
59 84
16 3
9
63 68
3
7
20 8
26 33
15 15
11 7
48 44
78 100
13 0
3
6
'
'
18 3 36 10 8 16 7
7
!
Training in care of child Transportation to school
'
NOT USED
'
13 16
t
Increases were also noted in the frequency with which families used education services, trainiig in the care of the child, transportation to school, and routine medical service, although these changes were small. Also of interest are the service needs which persist regardless of the intervention. Table 3 shows that families still indicated a high level of need for family and child centered recreational activities, life planning services, legal services, regular day care, and speech therapy. Mothers were asked about the ways in which they were helped by project staff. They identified greater access to services, assistance with financing of services, opportunities to network with other families, emotional support from other families and staff, information about care of the child, and the development of advocacy skills. One mother summed it up when she said, "Our family became stronger and,we don't feel like we're alone."
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Table 3 ._ _-._I Bish Service Needs at Intake and ~ollou-UD
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USED
service
NOT USED
satiefie&
Not satistied
Needed
Not Neede
%
%
%
%
61 48
25 33 29 43
Recreation activities (family)
111 1 5 ~
4 4
Life planning services (child)
14 3
0
57 43
Recreation activities (child)
7 17
0 3
46 40
0
'
..-
Legal services Regular day care (child) Speech therapy (child)
' == Follow-up Intake -
Mothers were also asked to rate satisfaction with their current life situation at both intake and follow-up. Maternal ratings were measured on a ten point L i e r t scale from (1) "worst possible life" to (10) "best possible life." Maternal life satisfaction sigmcantly increased from 5.39 at intake to 6.25 at follow-up (t (27) = 2.41, p < .02), indicating that mothers were generally more satisfied with their life situation at followup than they were at intake. The coping mechanisms mothers utilized were determined by the use of a qualitative measure. Mothers were asked in an open-ended format "What helps you cope with the demands of your child's care?" Their responses ranged from the love that they felt for their child, such as: "a funny, hard-working, loving handicapped son"; "loving her, wanting her home, and being her mom"; to the support they had from others: "a great husband and wonderful sons"; talking to understanding people"; to informal and formal suppons: "being respected for my decisions and
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input regarding my son's care"; "nursing care and keeping busy"; to their faith: "prayer and my relationship with Jesus." As a measure of the coping ability of non-handicapped siblings, mothers were asked on a five point Likert type scale from (1) "excellently" to (5) "poorly" how well their non-handicapped children wped with the demands of the child with handicaps. There was a slight decrease in sibling coping between intake (M = 2.41) and follow-up (M = 2.77), although the change was not significant. (Lower scores are more positive.) In an open-ended format, mothers were asked to discuss the ways in which their other children cope with the demands of the child with handicaps. In comparing open-ended responses at intake and follow-up, in no case did mothers report an improvement in coping on the part of nonhandicapped siblings. Illustrative of their responses are the following quotes: "We have to drag both kids to the hospital and they don't like it. They can't participate in school events." "Our youngest one is not talking, has temper tantrums, is not sleeping and doesn't want to leave us." "They feel frightened and upset when our handicapped child is having problems." Another measure of the impact of caring for a child with special needs is the inhence felt in terms of the marital relationship. When asked about how their marriages had been affected, mothers were equally split between positive and negative responses. Positive comments included: "It has made us a stronger, closer, more tired couple." "My husband and I are now more open with our emotions." "It has made us rely on each other." Other mothers spoke of the strain on their marriage: "We're finding it real stressful; it's not a normal Life; we have no privacy because we share our lives with too many people." "The illness has caused a great strain and magnified other problems." DISCUSSION This study is limited in that there was no control group therefore it is not known whether families would have experienced the same gains without benefit of the case management services. Furthermore, generalizations are limited by the fact that families were referred for or sought out the services of the projects, resulting in bias due to self-selection. Despite these limitations, it appears that one of the major strengths of the family-centered case management projects was in their ability to access certain services for families. The results show that families more often received respite care, nursing services, training in the care of the
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child, educational services, and transportation to school. However, families continued to experience high service needs for recreational activities, life planning, regular day care, legal services, and speech therapy. These results indicate that the projects are limited by the services they can piece together from their communities. Although there has been an increased emphasis on family support services, this generally translates to respite care, nursing services, and training in the care of the child at the service system level. Services which are not specialized but are more likely to be part of the general supports provided by the community, such as recreation or regular day care, were not accessible to families of children with disabilities and health problems. Another major concern raised by both families and social workers was problems with health insurance. Although the majority of families had some type of health insurance, over a third felt that their insurance was inadequate. Health insurance problems included differing interpretations of covered services between families and insurance companies; a bias towards funding of inpatient as opposed to family based care; a lengthy and tedious process for the application of special federal programs to fund family care. The difficulties obtaining funding for services were borne out in the amount of time social workers devoted to this function. In addition to spending 20% of their time arranging services, social workers spent another 25% of their time arranging for fmancing. Furthermore, social workers reported that this did not change with the family's longevity in the program. Social workers found themselves continually working on financing because of reapplication and ongoing documentation requirements. T i e spent on attaining funding and arranging services detracts from the amount of time and energy social workers and families can focus on other concerns. This may in part explain why non-handicapped siblings did not seen to fare any better as a result of the family's involvement with the project. When mothers were asked how well their non-handicapped children cope with the caregiving demands of the child with handicaps, there was no signif~cantchange betweenintake and follow-up. Openendedresponses confirmed the difficulties non-handicapped siblings experience, including problems sleeping, anger, fear, resentment, and jealousy. Other familycentered case management programs should consider specific approaches to assist non-handicapped siblings such as support groups. Matemal life satisfaction signif~cantlyimproved between baseline and one year follow-up. This may be related to the many benefits such as access to services, networking with other families, and advocacy, which mothers derived from the projects.
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Although mothers overwhelming evaluated the projects positively, project staff were limited by systemic constraints outside of their control. 'Ihese included lack of some services in the community, problems accessing non-specialized services, and difficulties with insurance. In order to provide meaningful familycentered care, it is necessary to address these issues on a policy level. Similar projects in other communities will experience the same - l i t a t i o n s unless policies are established to increase availability of and access to services. Shides have been made in the family support arena, but it is apparent from the results of this study that there is much that still needs to be done if family burden is to be reduced. RECOMMENDATIONS
The findings indicate that family-centered case management services are beneficial to families particularly in accessing existing services and increasing maternal life satisfaction. Policy and program recornmendations to social workers concerned with this population of children and families include: 1. Develop and implement family-centered case management services to assure that families are linked with existing services. 2. Increase community capacity to integrate children with special needs and their families into generic services such as day care and recreation. 3. Simplify the application and financing procedures for family support services. 4. Develop support servicesfor siblingsof children with special needs. 5. Support a universal program of health care or health insurance which favors reimbursement for home care and is administratively simple. REFERENCES Bates, M.V.(1985). State family supportlcash subsidy programs. Wisconsin Council on Develo~mentalDisabilities. Bruininks, R.H., ~aubkr,F.A. & Kudla, M.J.(1979). National survey of community residential facilities: A profile of residences and facilities in 1977. M i e ap&, MN,university of &esoia. English R.W. & Olson, K.K. (1978). Parenting handicapped children: Their
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earliest experiences. The Journal for Special Education, 15(1), 10-17 and 15(2), 169-186. Family Resource Coalition Report (1988). Family Resource Coalition Hobbs, N., Perrin, J.M., & keys, H.T. (1985). Chronically ill children and their families. San Francisco: Jossey-Bass. Kazak, A.E. & Marvin, R.S. (1984). Differences, difficulties and adaptation: Stress and social networks in families with a handicapped child Family Relations. 33. 67-77. Kom, S.I., Chess, S., & Femandez, P. (1978). The impact of children's physical handicaps on marital quality and family interaction. In R. M. Lerner and Y. B. Spanier (Eds.), Child influences on marital and family interaction: A life span perspective. @p. 299-326). New York: Academic Press. Marcenko, M.O. & Meyers, J.C. (1991). Mothers of children with developmental disabilities: Who shares the burden? Family Relations, 40, 186-190. Michigan Developmental Disabilities Council, Lansing, MI. (undated). Moxley, D.P. (1989). The practice of case management. Newbury Park: Sage. Olshansky, S. (1962). Chronic sorrow: Aresponse to having a mentally defective child. Social Casework. 43, 190-193. Paul, J.L. & Beckman-Bell, P. (1981). Parent perspectives. In J. Paul (Ed), Understanding and working with parents of children with special needs. @p. 119-153). New York: Holt, Reinhart, and W i t o n . Schonell, F.J. & Watts, B.H. (1956). A fust survey of the effects of a subnormal child on the family unit. American Journal of Mental Deficiency. 61.210-219. Singer, G.H., Irvin, L.K.,Irvine, B., Hawkins, N. (1989). Evaluation of community-based support services for families of persons with developmentaldisabilities. Journal of the Association for Persons with Severe Hondicaps, 14,312323. W i e r , L.,Wasow, M., & Hatfield, E. (1981). Chronic sorrow revisited: Parent vs. professional depiction of the adjustment of parents of mentally retarded children American Journal of Orthopsychiatry. 51, 63-70.
