Developmental Disabilities

This NASW research Web page focuses on developmental disabilities and social work’s response through research, collaboration, and advocacy. It provides an overview of the profession’s stance on developmental disabilities (DD) and its contemporary commitment to serving those with DD and their families, and offers links to resources and research-based publications. Research in the arena of disabilities is approached from a variety of perspectives, ranging from the interpersonal to the political. Multiple complex sociohistorical influences frequently adversely affect the lives of those living with disabilities and their families. In many instances, it is not the developmental disability per se that creates challenges for an individual with DD and the family, but rather society’s response to the individual’s condition. The emerging field of Disability Studies provides exposure to disability from a variety of perspectives, including theories, practices, policies, histories, communities, and events that shape our understanding of biological and cognitive differences. [Read More at http://disabilities.temple.edu/programs/ds/]

Developmental Disabilities Defined

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 defines a developmental disability as: a severe, chronic disability of an individual that:

  • is attributable to a mental or physical impairment or combination of mental and physical impairments;
  • is manifested before the individual attains age 22;
  • is likely to continue indefinitely;
  • results in substantial functional limitations in three or more of the following areas of major life activity:
    • Self-care
    • Receptive and expressive language
    • Learning
    • Mobility
    • Self-direction
    • Capacity for independent living
    • Economic self-sufficiency; and
  • reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.

Developmental disabilities are often categorized as relating to the nervous system, degenerative conditions, metabolism, and sensory-related disorders. In general, mental or physical developmental disabilities are present at birth and are not acquired unless the onset is early enough in life as to interfere with overall childhood development.Usually lifelong, DDs may affect an individual’s capacity for independent living, mobility, communication and language development, self-management, and economic independence. Approximately 51.2 million people, or 18 percent, in the United States have a disability with roughly 11 percent of children ages 6 to14 affected. Approximately 3 percent of the U.S. population has a developmental disability. The National Center for Birth Defects and Developmental Disabilities estimates that one in every 33 babies in the United States is born with a birth defect.

Historically, social workers have valued holistic conceptions of their fellow humans and supported the ecological approach–the classic “person in the environment” perspective. Social work’s commitment to social justice mandates that social workers provide outreach and advocacy for those who are marginalized and underserved. Research documenting the impact of marginalization and the value of services illustrates how social workers can improve the condition of individuals with DD. Unfortunately, adults and children with developmental disabilities remain some of the most marginalized members of society today.

The nationwide trend toward deinstitutionalization that has governed legal, political, and practice interventions for the past 30 years in the United States has evoked many opportunities for social work practitioners and researchers to develop and implement interventions designed to enhance the quality of life of individuals with DD.  Since large numbers of formerly institutionalized people have become integrated into our communities as citizens, social workers have been positioned to both shape services on a policy level and to work directly with people who live with disabilities across the lifespan. Practitioners work in a wide array of venues such as housing, employment and training, education, and community-based medical and psychological care. These and other practice arenas are critically informed by social work researchers’ efforts.

Levels of Research

The following descriptions of social work research in DD reflect the profession’s engagement on multiple levels, from the individual/family, to population-specific, to systems of care research, to national and international levels.

On a practice level, social workers are frequently positioned to advance family-centered research projects and interventions that recognize the central role families play in the life of individuals with DD. By placing the individual with a disability in the context of the family, social workers understand that challenges and personal growth opportunities are truly a shared family experience. Enhancing the quality of life of the individual with the disability as well as that of surrounding family members is a priority. One example of social work leadership in family-centered research is the recent emphasis on the sibling experience.

On a national level, increased community integration of people with disabilities has amplified the need for culturally sensitive, family-centered practice approaches. Family-centered practices have made significant inroads in the fields of neurodevelopmental services, interdisciplinary health groups, and in centers for disabilities research. These approaches highlight social work’s commitment to strength-based interventions that support connectedness and individual and family resilience. Social workers often play a pivotal role in interdisciplinary and cross-disciplinary teams engaging in research efforts to refine best practices and develop leadership skills.

In community and state mental health centers and departments, social workers are intricately involved in practice and research at all levels in order to serve children, adults, and families. Promising practice research supporting community integration frequently involves social workers in administration, data collection, research design, and evaluation roles.

Research Training Resources

Research training specific to developmental disabilities at the master’s and doctoral graduate levels is available through the Leadership Education in Neurodevelopmental and related Disabilities (LEND) training programs across the country. These programs are funded by the Health Resources and Services Administration (HRSA)’s Maternal and Child Health Bureau (MCHB). LEND programs support trainees and faculty and provide continuing education and technical assistance in training the next generation of leaders in maternal and child health. LENDs emphasize interdisciplinary, family-centered, culturally competent care with a population-focused, public health approach. Likewise, University Centers for Excellence in Developmental Disabilities (UCEDDs) often act as a research arm for states and focus on health care, education, and the development of effective community-based services for people with developmental disabilities. As members of interdisciplinary research teams at LENDs, UCEDDs, and other programs, social workers incorporate the person-in-environment ecological research perspective. The Association of University Centers on Disabilities (AUCD) provides a national interdisciplinary organization for LENDs and UCEDDs that supports the advancement of care and research in this area. These programs and organizations are excellent resources for social work researchers.

Types of Research Focus

Social work researchers in LEND and other programs around the country are engaged in a variety of research projects. For example, care coordination research assessing the availability of coordinated care services for children with DDs and their families along with an assessment of transition planning (medical and educational) experiences of adolescents are underway at the Golisano Children’s Hospital, University of Rochester’s LEND program. At the University of Massachusetts Medical School’s Shriver Center and LEND in Waltham, MA, social workers are involved in a parent-supported weight reduction program for adolescents with developmental disabilities that utilizes supportive behavioral techniques and emphasizes healthy eating and increased physical activity.

In the international arena, the 5th International Conference on Social Work in Health and Mental Health (sponsored in part by NASW and CSWE), which convened in Hong Kong in December 2006, featured several symposia on family resilience, rehabilitation, and various other aspects of disability research related to infants, children, adolescents, young adults, and elders living with all forms of DDs. Social work practitioners and researchers from Africa, Asia, Australia, Eastern and Western Europe, the Middle East, and North, Central, and South America are engaged in specific inquiry, such as integrating children with disabilities into mainstream educational services or serving adults recently released from prisons, according to their fit with cultural complexities and various dimensions of best practices.

Social workers in disability work have both the opportunity and the obligation to engage in a wide range of research efforts, from the simplest single subject design in a neighborhood agency, to program evaluation, to policy analysis, and to secondary analysis of governmental data. As our communities are continuously enhanced by the participation of children and adults with disabilities, social workers will continue to direct their research toward making the lives of those who experience disabilities more just and fulfilling. This, in turn, will enrich all members of society.

Resource List

  • American Psychiatric Association. (n.d.). Developmental disabilities. Available at: http://healthyminds.org/developmentaldisabilities.cfm
  • Batshaw, M. (2001). When your child has a disability: The complete sourcebook of daily and medical care (rev.ed.). Baltimore: Brookes.
  • Batshaw, M., Pellegrino L., & Roizen, N. (Eds.) (2007). Children with disabilities (6th ed.). Baltimore: Brookes.
  • Bellin, M. H. (2006).  Examination of an ecological model of adjustment of adolescent siblings of youth with spina bifida.  Dissertation Abstracts International, 67(4A), 1531.
  • Bellin, M. H., & Kovacs, P. J. (2006). Fostering resilience in siblings of youths with a chronic health condition: A review of the literature. Health & Social Work, 31, 209-216.
  • DePoy, E. (2002). Theoretical approaches to disability content in social work education. Journal of Social Work Education. Available at: http://www.highbeam.com/doc/1G1-82739471.html
  • Developmental Disabilities Assistance and Bill of Rights Act 2000 (PUBLIC LAW 106-402; 114 STAT. 1677 (October 30, 2000). Available at: www.acf.hhs.gov/programs/add/ddact/DDACT2.html
  • Dewees, M. P. (2004). Disability in the family: A case for re-working our commitments. Journal of Social Work in Disability & Rehabilitation, 3(1), 3-20.
  • Feeman, D. J., & Hagen, J. W. (1990). Effects of childhood chronic illness on families.  Social Work in Health Care, 14, 37-53.
  • Gilson, S. F., Bricourt, J., & Baskind, F. R. (1998). Listening to the voices of individuals with disabilities. Families in Society, 70, 188-196.
  • Larson, S., et al. (2000). Prevalence of mental retardation and/or developmental disabilites: Analysis of the 1994/1995 NHIS-D. MR/DD Data Brief, 2 (1). Institute on Community Integration, University of Minnesota.
  • Mackelprang, R., & Salsgiver, R. (1999). Disability: A diversity model approach in human service practice. Pacific Grove, CA: Brooks/Cole.
  • Marcenko, M. O., & Smith, L. K. (1992).  The impact of a family-centered case management approach. Social Work in Health Care, 17, 87-100.
  • National Center on Birth Defects and Developmental Disabilities. (n.d.). Available at: http://www.cdc.gov/ncbddd/bd/faq1.htm#CommonBD
  • Vargas, C. M, & Prelock, P. A. (Eds.). (2004). Caring for children with neurodevelopmental disabilities and their families: An innovative approach to interdisciplinary practice. Mahwah, NJ: Lawrence Earlbaum Associates.
  • NOTE: Brookes Publishing has an extensive selection of books on disabilities, families, and child development, many of which are authored by AUCD members. http://www.brookespublishing.com/store/index.htm

Journals

Web Sites on Children, Families, and Disabilities

The content for this page was provided by the Association of University Centers on Disabilities.

Contributing Authors
Marty Dewees, PhD, MSW.  University of Vermont Interdisciplinary Leadership Education for Health Professionals.
Crystal Pariseau, MSSW.  Association of University Centers on Disabilities.
Susan Taylor-Brown, PhD, ACSW.  Strong Center for Developmental Disabilities, University of Rochester.
Ruth B. Smith, PhD, MSW, ACSW.  Eunice Kennedy Shriver Center, University of Massachusetts Medical School.
Julieta P. Hernandez, LCSW.  Mailman Center for Child Development, University of Miami Miller School of Medicine.
Melissa Bellin, PhD, MSW.  University of Maryland School of Social Work.

July 1st, 2007 at 1:18 pm

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