Home » University of Kansas » Supporting All Families of Children with Disabilities: A mission not yet accomplished

Supporting All Families of Children with Disabilities: A mission not yet accomplished

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Editors

Sorcha Hyland
Lara Mann
Deb Griswold
Elizabeth Kozleski

Dr. Mian Wang

No one would argue against the importance of supporting all families of children with disabilities. Over the last few decades, there are significant strides being made in the United States that manifest the paradigm shift in the cause of family support. Family centeredness has been widely embraced as a philosophy or a key principle by professionals across a variety of helping professions in the medical, social, and educational world for delivering services towards children with disabilities and their families. Thanks to IDEA mandates, family participation in decision making of their children’s education and service has been increasingly promoted and safeguarded. As a result, home and school collaboration or family and professional partnership emerges as indispensible component of effective family support which can mediate the effect of service provisions on family quality of life (Summers et al., 2007).

The family system and function and role of family in their child’s development throughout lifespan is granted paramount importance on the basis of Bronfenbrenner’s ecological theory of human development as researchers and practitioners attempt to gain a better understanding of the cultural niche and sustainable routine of family to facilitate family resilience. Voices of parents of children with disabilities and family advocates are increasingly heard in the public and professional arenas as they speak up in sharing their lived experiences.

However, a myriad of challenges remain for families since many individuals with disabilities, especially those with severe needs, require some form of lifelong assistance to live independently, work in the community, make friends, enjoy leisure activities, and exercise self-determination in their life decisions. Families must provide the majority of such assistance over the life course regardless the level of supports they receive. It is worth pointing out that family caregiving is beneficial to society as a whole in which Mahoney (1976) described it as a national treasure. Caregiving families make an enormous public contribution to the U.S. society while they bear the burden of providing essential assistance that otherwise is very expensive, well beyond the general safety net programs available in the country.

In contrast to enormous contribution of families there comes a dilemma for family support policy and practices with its dire reality. Despite the recognized centrality of families in assisting their children with disabilities, only 4% of public funds for developmental disability services are allocated for family support (Braddock et al., 2015). As a result of such policy, over 2,500 parents of individuals with ID from all 50 states voiced strongly in a 2011 national survey (L. Anderson, Larson, & Wuorio, 2011). More than 50% of the participating families reported major problems on all items of a list of common family needs indicating that much of what caregiving families need is not yet available. Thereby, caregiving families have substantial needs for services aimed at bolstering their capacity to provide support and to achieve an enhanced quality of life. There is a compelling need for evidence-based practices for providing such support.

However, a comprehensive literature review and meta analysis of evidence based practices regarding family supports to individuals with developmental disabilities reveal some alarming facts on the shortfall of evidence-based practices for supporting families (Wang & Singer, in press). The most troubling findings are that families underserved remain the same for the last decade and that family support practices center on only mothers, but not the whole families. Inequality in service access and quality manifests in families from culturally and linguistically diverse backgrounds as well as in families living in poverty. The other concern lies in a limited literature of effective parent education and support programs only applied to mothers. We do not know much about how to support fathers, siblings, and grandparents of children with disabilities. We also fall short in knowledge about supporting family as a whole. In addition, there is still a lack of evidence about long-term effects of many identified evidence-based practices for family support.

It seems clear that while researchers and practitioners have come a long way in learning how to support families, the United States is still at an early stage of creating a service system, which provides evidence-based practices as standard practice. If the nation hopes to adequately address the needs of its elderly and its citizens with disabilities, it will need to embrace public policies that are more supportive of family caregiving for the family member with disabilities regardless of their nature or cause. Over a decade ago, I was fortunate to have the opportunity to pursue my doctoral study in family and disability policy at KU. I had the privilege to study with Ann and Rud Turnbull, the leaders in the field of disability and family research. Ann and Rud are shapers and movers for numerous national policies on family and disability and are role models for the younger generations of scholars in terms of using cutting-edge research to inform and influence policy changes. They also wear the hat of family advocates in addition to the hat of researchers and public intellectuals. As we face many challenges aforementioned in supporting families of children with disabilities, we should be reminded of our role as family advocates who need to stand up for families. When so many families are left behind in receiving necessary services and supports, we must champion for policy changes to better support families of children with disabilities.

Doing high quality research is the other important aspect of our mission to supporting families of children with disabilities. When the family research literature is still replete with knowledge mainly surrounding middle class mothers, we are ill-equipped to gain understanding of and provide useful services to families underserved who typically come from culturally and linguistically diverse backgrounds and families marginalized due to social economic status. One other remaining enigma in family research has to do with finding proper means of inquiry to unravel family issues both conceptually (e.g., holistic construct of family like family quality of life) and methodologically (e.g., unit analysis of whole family). The emerging trend in bolstering multimodal treatment approach (e.g., combination of positive behavioral support and mindfulness training or Stepping Stones Triple P) for family support requires even more empirical evidence garnered from research prior to its full-scale implementation.

References:

Anderson, L., Larson, S. A., & Wuorio, A. (2011). 2010 FINDS National Survey Technical Report Part 1: Family Caregiver Survey. Minneapolis, MN: University of Minnesota, Research and Training Center on Community Living.

Braddock, D., Hemp, R., Rizzolo, M.C., Tanis, E.S., Haffer, L., & Wu, J. (2015). The state of the states in intellectual and developmental disabilities: Emerging from the great recession. Washington, DC: American Association on Intellectual and Developmental Disabilities (AAIDD).

Mahoney, M. J. (1976). Scientist as subject: The psychological imperative (Vol. 14). Oxford, UK: Ballinger.

Summers, J. A., Marquis, J., Mannan, H., Turnbull, A. P., Fleming, K., Poston, D. J., . . .Kupzyk, K. (2007). Relationship of perceived adequacy of services, family–professional partnerships, and family quality of life in early childhood service programmes. International Journal of Disability, Development and Education, 54, 319–338. doi:10.1080/10349120701488848.

Wang, M. & Singer, G. (in press). Supporting families of children with developmental disabilities: Evidence based and promising practices. UK: London. Oxford University Press.

mianwang-web

Mian Wang is a Professor in the Department of Education and Faculty Director of the McEnroe Reading Clinic. He received Ph.D.s from the University of Patras, Greece, in Applied Developmental Psychology with an emphasis on Cognitive Development of Children with Intellectual Disabilities as well as from the University of Kansas in Special Education with an emphasis on Family and Disability Policy. Before his 12 years working experience in the field of disability and special education in several countries such as Canada, China, Greece, and USA, he completed his undergraduate and graduate studies in Psychology in China. Dr. Wang’s research interests include: child and family outcomes of early childhood services, family-professional partnership, atypical child development, positive behavioral support in cultural context, and disability policy.

In recent years, his research has primarily focused on examining family outcomes of early childhood services (e.g., early intervention programs and early childhood special education programs), particularly in the areas of family quality of life and family-professional partnership. As a primary researcher of the research team at the Beach Center on Disability of the University of Kansas, he participated in two federal funded research projects by NIDRR (National Institute on Disability and Rehabilitation Research) and OSEP (Office of Special Education Programs) of the U.S. Department of Education which have led to the development and validation of two family outcome measures: Family Quality of Life Survey and Family-Professional Partnership Scale. Other areas of his interest pertain to disability policy issues that focus on supporting families of children with disabilities, analyzing impact of policy on the system structure of early childhood service and service delivery (i.e., policy on the streets), and analyzing comparatively international policy on disability and special education, in particular, those of China. Another set of interests concerns studying positive behavioral support (PBS) in cultural context, in particular, culturally responsive PBS practices to families of children with disabilities who are from culturally and linguistically diverse backgrounds. In addition, he is interested in atypical child development research aiming at understanding how children with and without intellectual disabilities differ in their cognitive development in terms of the structure, sequence, and rate of development.


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