States Need to Expand Self-Advocacy Services in their LTSS

Posted on December 20, 2017

By Carli Friedman, CQL Director of Research

Self-advocacy is the civil rights movement by and for people with intellectual and developmental disabilities (IDD). Self-advocacy can be a crucial source of self-determination and empowerment for people with IDD as well as lead to larger systemic change. Because of the importance of self-advocacy, the aim of this study was to examine how Medicaid Home and Community Based Services (HCBS) waivers, the largest providers of long term services and supports (LTSS) for people with IDD, across the nation provide self-advocacy services. To do so, Medicaid HCBS waivers for people with IDD from fiscal year (FY) 2015 were analyzed to determine if and how states were providing self-advocacy services, and to compare trends across those services.

Findings revealed, in FY 2015 24 states provided 74 self-advocacy services in their HCBS IDD waivers. Waiver self-advocacy services aimed to promote self-determination, enhance people with disabilities’ ability to function in the community, and provide peer support and mentorship from other self-advocates. A small proportion of self-advocacy services were also aimed at helping participants advocate for waiver services.

States provided self-advocacy services in waivers through two different means:

• Embedded services: Bulk services that include self-advocacy within the service. Self-advocacy services were most often embedded within day habilitation, supported living, and supported employment services.
• Stand-alone services: Independent services that were exclusively for the purpose of providing self-advocacy.

The majority of self-advocacy services were embedded services (n = 63 services, 85%), while fewer were stand-alone services (n = 11 services, 15%). In fact, only 4 states provided stand-alone self-advocacy services: Colorado, Connecticut, Massachusetts, and Wisconsin (see figure).

Waiver Provision of Self-Advocacy Services

Unlike embedded services, stand-alone services could be further analyzed to differentiate between utilization and expenditures. In doing so we found the 11 stand-alone services projected a total of $1.57 million for self-advocacy services in FY 2015 for 2,000 people with IDD. Colorado alone comprised more than half of the projected spending ($1.0 million) and participants (1,090). On average the stand-alone services projected spending approximately $900 per participant annually on self-advocacy services, making them relatively affordable compared to other waiver expenditures.

While approximately half of states provided some sort of self-advocacy service in their HCBS waivers for people with IDD, less than 0.5% of the national waiver participants were projected to receive stand-alone self-advocacy services in FY 2015. A lack of services can hinder people with IDD’s opportunities to participate in self-advocacy. For this reason, and because of the continued shift towards person-centered planning as a result of the HCBS settings rule, states must expand their provision of self-services with waivers; “service provision by the largest provider of LTSS for people with IDD should reflect the advances made by the movement by actively working to encourage it.”

This article is a summary of the following journal manuscript: Friedman, C. (2017). Self-advocacy services for people with intellectual and developmental disabilities: A national analysis. Intellectual and Developmental Disabilities, 55(6), 370-376. https://doi.org/10.1352/1934-9556-55.6.370