“40 Years Is an Awful Long Time”: Parents Caring For Adult Sons and Daughters With Disabilities

Karola Dillenburger, Lyn McKerr


Older people who are caring for their adult sons and daughters with disabilities are under tremendous stress because they may suffer health problems themselves; have financial problems due a lifetime of caring; may have to care on their own due to the death of their spouse; worry about the future care of their child; and may feel uncomfortable approaching professionals for help. Professionals working with these families need to take contextual pressures into consideration when planning intervention. Twenty-nine parents of 27 adults with intellectual and/or developmental disabilities (including autism) were asked about present care and service arrangements, health issues, family support, and ‘futures planning’. The research reported here identifies complex networks of relationships. Virtual absence of structured futures planning was one of the key issues. Recommendations are made for professionals working in this field.


older caregivers, adults with disabilities, future planning, behavior analysis

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DOI: https://doi.org/10.5210/bsi.v18i1.2449

Published by the University of Illinois at Chicago Library

And Behaviorists for Social Responsibility