Megan Kirshbaum, Ph.D., Sherrie Hansen, Ph.D.
Through the Looking Glass is the National Resource Center for Parents with Disabilities, funded by the National Institute of Disability and Rehabilitation Research, U.S. Department of Education. One of the goals of this national center is to improve intervention and resources for parents with developmental disabilities. Another goal is to improve social services, mental health and legal practice when parents with disabilities are involved in child protection or marital custody situations. The center has been providing technical assistance to parents and practitioners, to regional as well as statewide systems throughout the U.S.
In the San Francisco Bay Area Through the Looking Glass has been serving families in which one or both parents have an intellectual disability since the agencys founding in 1982. Many of these parents have also had a mental health disability. In the 1980s these families were referred to Through the Looking Glass after involvement with child protective services systems. In 1990 Through the Looking Glass received funding for a large prevention-oriented project which provides services to parents who are intellectually disabled and dually diagnosed (intellectual and psychiatric or psychological disabilities). More than 40 families annually receive intensive, home-based and individualized services during pregnancy and parenthood. These services include clinical mental health intervention, parent education and support, family therapy, and developmental intervention for the children. Last year a parent support group with a developmental play group for the children was established. The project has been innovative in that it was apparently the first large-scale program for parents with intellectual disabilities and dual diagnosis to have grown out of an infant mental health model. The orientation of the project is influenced by its presence in an agency, Through the Looking Glass, which is based in disability culture and the independent living movement for adults with disabilities (Kirshbaum, 2000a).
Based on program evaluations done in 1997 and 1999 and a dissertation study (Ehlers-Flint, 2000), the project is achieving positive outcomes, especially considering that 94% of the families in the project have multiple stressors in addition to the disabilities of the parents (e.g., 87% low income, 77% parental trauma or abuse history). While research literature cites out-of-home placement rates for parents with developmental disabilities occurring in from 25% to 60% of families, Through the Looking Glass 2% to 7% out-of-home placement results strongly suggest that the intervention has been effective. Analyses of progress on individualized family goals also indicate positive impact in the areas of parent-child relationship, family functioning, practical care-giving, and child development (Hansen,1994 & 1999).
The infant mental health model focuses on enhancing the relationships and interactions between parents and their babies, e.g., through using infant/parent psychotherapy approaches. There is an emphasis on prevention of problems and quality of attachments as integral to positive emotional and developmental outcomes for children. This model is especially relevant to intervention with dually diagnosed parents, given the need for mental health expertise, the importance of prevention of problems, and the prevalence of trauma histories for these parents. Longitudinal research on attachment argues for the potential impact of infant mental health practice (Egeland & Erickson, 1999). There is a need for infant/family mental health practitioners serving parents with dual diagnosis and their children to be knowledgeable about how to adapt intervention for adults with cognitive disabilities. There is also a need for developmental disability specialists serving parents with dual diagnosis and their children to be aware of current knowledge regarding infancy, attachment, and family systems.
Infant mental health knowledge has been particularly salient for achieving positive outcomes with parents who have dual diagnosis. Eliciting the ghosts in the nursery (Fraiberg, Adelson, & Shapiro,1975) and the meaning of behavior has been effective in producing change that is not achieved by more educative or behavioral approaches alone. A therapeutic and containing relationship with the parent enacts and puts into practice concretely and understandably what one wants to be reflected in the infant/parent relationship. It provides modeling at a deeper level than that of skills; ones relationship with a parent is a model for attachment and a laboratory for developing abilities that enhance that relationship.
Non-pathologizing and respectful home-based family therapy can be an essential part of intervention and can help the family system sustain positive and respectful support for the parent with dual diagnosis. This is especially crucial because of the social exclusion experienced by adults with intellectual disabilities and the centrality of the family in their social life (Krauss & Seltzer,1992).
There are many problems with current practice with parents with intellectual disability or dual diagnosis (Booth & Booth, 1994; Ehlers-Flint, 2000). Results from an ongoing analysis of national evaluation and intervention practice with child protection system-involved parents with intellectual disability have been particularly concerning (Kirshbaum, 2000b). For instance, observation of actual parent-child interaction during evaluation of parenting competence may be limited, absent, or in an inappropriate setting such as an office. Child protection systems are applying labels of developmental disability or mental retardation to parents with diverse functional abilities and over-generalizing about parents limitations. Advocates have considered it discriminatory practice when legal and social services systems presume parental incompetence and the inability to benefit from reunification services based on a categorical diagnosis of mental retardation or developmental disability, rather than on individual functioning and behavior of a parent with his or her child (Watkins,1995).
One needs to observe functioning and behavior during parent/child interaction in order to develop appropriate adaptive intervention techniques. And one cannot discern the full potential of parents with intellectual disability without using adaptations that are individualized to the parents functioning. In current practice many parents are portrayed as incapable when they do not benefit from generic or unadapted intervention; rather, it is the disability appropriateness of intervention that needs to be evaluated.
Adaptation and expertise during evaluation and intervention are especially crucial to counteract the effects of stigma and discrimination on parents as well as on the sometimes biased assumptions of professionals. A respectful and empowering orientation is particularly crucial for intervenors; it is an underlying adaptation needed in the face of pervasive stigmatization and social oppression.
This discussion reflects a disability culture perspective on intervention for parents with dual diagnosis. As such it emphasizes the socially constructed elements of disability experience (e.g., stigmatization) and pragmatic ingenuity regarding adaptations in the face of social and functional obstacles. Disability cultures focus on contextual and environmental issues is also consistent with the presentations emphasis on family systems and infant-parent interactionthe role of relationships in preventive intervention.
Booth,T. & Booth, W. (1994). Parenting under pressure: mothers and fathers with learning difficulties. Buckingham, England: Open University Press.
Egeland, B. & Erickson, M. (1999). Findings from the parent-child project and implications for early intervention. Zero to Three,20(2), 3-10.
Ehlers-Flint, L. (2000). Perceptions of parenting and social supports of mothers with cognitive disabilities. Alameda: California School of Professional Psychology. Unpublished doctoral dissertation.
Fraiberg, S., Adelson, E., & Shapiro, V. (1975). Ghosts in the nursery: A psychoanalytic approach to the problems of impaired infant-mother relationships. Journal of the American Academy of Child Psychiatry, 14, 387-422.
Hansen, S. (1994). Serving parents with cognitive disabilities. Parenting with a Disability ,3(2), 4-6.
Hansen, S. (1999). Parents with cognitive disabilities. Parenting with a Disability, 7(2, 1-8.
Kirshbaum, M. (2000a). A disability culture perspective on intervention with parents with physical or cognitive disabilities and their infants. Infants and Young Children, 13(2), 9-20.
Kirshbaum, M. (Dec.,2000b). Evaluating evaluations of parents with intellectual disabilities. Invited Poster presented at the annual meeting of Zero to Three, Leadership Initiative, National Training Institute, Washington, D.C.
Krauss, M. & Seltzer, M. (1992). Social support networks of adults with mental retardation who live at home. American Journal on Mental Retardation, 96,432-441.
Watkins, C.(1995). Beyond status: The Americans with Disabilities Act and the parental rights of people labeled developmentally disabled or mentally retarded. California Law Review, 83, 1415-1475.
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Funds for this presentation and article come, in part, from the U.S. Department of Education, National Institute of Disability and Rehabilitation Research (NIDRR; #H133A980001). The content and opinions do not necessarily represent the policy of NIDRR, and the reader should not assume endorsement by the federal government.
For further information:
Meagan Kirshbaum, Ph.D.
Parents with disabilities at TLG
2198 6th St. #100
Berkely, CA 94710