The cost of disability advocacy: adjusting the self-sufficiency standard for children with disabilities

ABSTRACT This article proposes a theoretical model for adapting, for families of children with disabilities, Brooks and Pearce's Self-Sufficiency Standard [(2000). “Meeting Needs, Measuring Outcomes: The Self-Sufficiency Standard as a Tool for Policy-Making, Evaluation, and Client Counseling.” The Clearinghouse Review 34 (2000–2001): 34]. With regard to such families, three additional components are considered: increased out-of-pocket expenditures, lost wages for caregiving, and cost of advocacy. Like the Self-Sufficiency Standard itself, this adaptation does not propose an extravagant or even comfortable lifestyle. Instead, this model extends Brooks and Pearce's advocacy agenda by estimating the relative costs of obtaining basic necessities and supports for families raising children with disabilities and by providing clear direction for community engagement in family economic policy.