Family-centered care is well suited to individuals with intellectual disability (ID) because of the complexity of their health, educational, vocational, and community living challenges across settings and over time. Individuals with ID require substantial family support and advocacy.
Rules for communication and familial structures vary widely from culture to culture. Speech-language pathologists (SLPs) are mindful of these variances and provide unique services to each individual with ID.
Recognition of the role of families in the development and learning of individuals with ID requires SLPs to provide ongoing support and resources to ensure that individuals and their families have a way to communicate with each other.
See also ASHA’s resource on focusing care on individuals and their care partners, ASHA’s Practice Portal page on Cultural Responsiveness, and the Administration for Community Living page on Person Centered Planning for further information.
SLPs work on teams with the individual with ID, parents and family members, direct support staff, and other professionals to coordinate services and to plan and implement goals and strategies that recognize and capitalize on their strengths.
Interprofessional education/interprofessional practice (IPE/IPP) is a core collaboration model, where multiple service providers learn from each other and work together to provide comprehensive, high-quality services.
A strengths-based perspective encourages practitioners to consider the potential and goals of an individual and their family (American Association on Intellectual and Developmental Disabilities, 2013). Challenges are acknowledged, yet strengths create a bridge to achieving valued life outcomes.
A strengths-based perspective emphasizes building trusting relationships with families in the natural environment with natural supports (Trivette & Dunst, 2000).
The need to develop and maintain functional communication to maximize self-sufficiency in individuals with ID is important to facilitate increased independence in the community.
The Communication Bill of Rights—originally developed by the National Joint Committee for the Communication Needs of Persons With Severe Disabilities in 1992 and updated in 2016—recognizes the right of all people to participate fully in communication (Brady et al., 2016).
SLPs play an important role in promoting communication abilities that further the independence and self-advocacy of persons with ID.
SLPs should respect individuals’ differences. Behavioral profiles across individuals or even etiologies are not similar or predictable based solely on a diagnosis of ID (e.g., Dykens et al., 2000). Each individual has their own personal likes, dislikes, strengths, and needs, and these can change over time and across living environments (Zigler, 2001).
Recognition of variability across individuals, etiologies, or diagnostic categories is essential to understanding and responding to persons with ID as functioning individuals (Zigler et al., 2002).
Community-based living provides more opportunity for communicating with a variety of individuals, improving quality of life, and offering new learning opportunities. Educational and community programs (including postsecondary programs), employment opportunities, and more independent living options for persons with ID are now the norm.
A community environment of respect for persons with ID
Services for persons with ID should be provided within natural environments when possible (e.g., homes; child care; and educational, vocational, and community settings that include typical peers).
To capitalize on teaching and learning opportunities throughout the day, SLPs teach caregivers, teachers, and other communication partners to embed communication intervention strategies in various settings (Woods et al., 2011).
Involving peers in intervention has several advantages for individuals with ID. For example, typical peers may
Peer interaction is important for adults, adolescents, and children. Interventions designed to enhance peer interactions in the settings in which adults live, work, or socialize have shown that continued support can lead to enriched social functioning. Children with ID may benefit from inclusive practices in education with peers without ID (Guralnick, 2006; Guralnick & Bruder, 2016). Skills- and support-based interventions can improve peer interaction in adolescents with intellectual disabilities (Carter & Hughes, 2005). Additionally, interventions such as job coaching, partner training, and social facilitation can improve interactions in the workplace (Mautz et al., 2001).
American Association on Intellectual and Developmental Disabilities. (2013). FAQs on intellectual disability. http://aaidd.org/intellectual-disability/definition/faqs-on-intellectual-disability#.VmBFnIIo75o
Brady, N. C., Bruce, S., Goldman, A., Erickson, K., Mineo, B., Ogletree, B. T., Paul, D., Romski, M. A., Sevcik, R., Siegel, E., Schoonover, J., Snell, M., Sylvester, L., & Wilkinson, K. (2016). Communication services and supports for individuals with severe disabilities: Guidance for assessment and intervention. American Journal on Intellectual and Developmental Disabilities, 121(2), 121–138. https://doi.org/10.1352/1944-7558-121.2.121
Carter, E. W., & Hughes, C. (2005). Increasing social interaction among adolescents with intellectual disabilities and their general education peers: Effective interventions. Research and Practice for Persons with Severe Disabilities, 30(4), 179–193. https://doi.org/10.2511/rpsd.30.4.179
Carter, E. W., Sisco, L. G., Chung, Y.-C., & Stanton-Chapman, T. L. (2010). Peer interactions of students with intellectual disabilities and/or autism: A map of the intervention literature. Research and Practice for Persons with Severe Disabilities, 35(3–4), 63–79. https://doi.org/10.2511/rpsd.35.3-4.63
Dykens, E. M., Hodapp, R. M., & Finucane, B. M. (2000). Genetics and mental retardation syndromes: A new look at behavior and interventions. Brookes.
Guralnick, M. J. (2006). Peer relationships and the mental health of young children with intellectual delays. Journal of Policy and Practice in Intellectual Disabilities, 3(1), 49–56. https://doi.org/10.1111/j.1741-1130.2006.00052.x
Guralnick, M. J., & Bruder, M. B. (2016). Early childhood inclusion in the United States: Goals, current status, and future directions. Infants & Young Children, 29(3), 166–177. https://doi.org/10.1097/IYC.0000000000000071
MacFarland, M. C., & Fisher, M. H. (2019). Peer-mediated social skill generalization for adolescents with autism spectrum disorder and intellectual disability. Exceptionality, 29(2), 114–132. https://doi.org/10.1080/09362835.2019.1579722
Mautz, D., Storey, K., & Certo, N. (2001). Increasing integrated workplace social interactions: The effects of job modification, natural supports, adaptive communication instruction, and job coach training. Journal of the Association for Persons with Severe Handicaps, 26(4), 257–269. https://doi.org/10.2511/rpsd.26.4.257
Nijs, S., & Maes, B. (2014). Social peer interactions in persons with profound intellectual and multiple disabilities: A literature review. Education and Training in Autism and Developmental Disabilities, 49(1), 153–165. https://www.jstor.org/stable/23880662
Paul-Brown, D., & Caperton, C. (2001). Inclusive practices for preschool children with specific language impairment. In M. J. Guralnick (Ed.), Early childhood inclusion: Focus on change (pp. 433–463). Brookes.
Trivette, C. M., & Dunst, C. J. (2000). Recommended practices in family-based practices. In S. Sandall, M. E. McLean, & B. J. Smith (Eds.), DEC recommended practices in early intervention/early childhood special education (pp. 39–46). Sopris West.
Walton, K. M., & Ingersoll, B. R. (2013). Improving social skills in adolescents and adults with autism and severe to profound intellectual disability: A review of the literature. Journal of Autism and Developmental Disorders, 43(3), 594–615. https://doi.org/10.1007/s10803-012-1601-1
Woods, J. J., Wilcox, M. J., Friedman, M., & Murch, T. (2011). Collaborative consultation in natural environments: Strategies to enhance family-centered supports and services. Language, Speech, and Hearing Services in Schools, 42(3), 379–392. https://doi.org/10.1044/0161-1461(2011/10-0016)
Zigler, E. (2001). Looking back 40 years and still seeing the person with mental retardation as a whole person. In H. N. Switzky (Ed.), Personality and motivational differences in persons with mental retardation (pp. 3–55). Erlbaum.
Zigler, E., Bennett-Gates, D., Hodapp, R., & Henrich, C. C. (2002). Assessing personality traits of individuals with mental retardation. American Journal on Mental Retardation, 107(3), 181–193. https://doi.org/10.1352/0895-8017(2002)107%3C0181:APTOIW%3E2.0.CO;2