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  • In honor of Developmental Disabilities (DD) awareness month, The Arc is inviting people to participate in “Let’s Go Out!,” a day for DD awareness.  “Let’s Go Out!” aims to raise awareness of DD by encouraging people to:

    Simply make plans to go out somewhere in public on Saturday, March 29. That’s all. Just plan a day out and about with friends and family or by yourself enjoying the things you like to do. And, in the process help raise awareness and generate some conversation about people with I/DD. This one-day movement will serve to harness our collective power to gain allies, foster understanding, dispel myths and encourage people without disabilities to recognize that we’re not so different after all."

    Raising awareness and educating the public about persons with disabilities and how they can be included in all aspects of community life is a critical component of self-advocacy. “Let’s Go Out!” is an effort to encourage individuals with ID/DD to actively break down social barriers and participate in this form of self-advocacy.

    The Arc’s campaign led us to look again at what NCI data show about participation in organized self-advocacy efforts.

    The information in this blog post is drawn from the 2012-13 National Core Indicators (NCI) administration of the Adult Consumer Survey (ACS) of 13,157 adults from 25 states and one sub-state entity.

    Slightly more than one quarter (26%) of all respondents to the ACS have participated in a self-advocacy group meeting, conference, or event. The rate of participation varies between states from a low of 17% to a high of 33%. 5% of all respondents had the opportunity to participate, but chose not to.

    These rates also vary by place of residence. Nationally, those respondents who reported that they had participated in a self-advocacy group meeting, conference or event, had the following living situations:

    Residence Type

    Percent of those in each residence type who reported to have participated in self-advocacy



    Community-based residence


    Independent home/apt


    Parent/relative’s home


    Foster care/host home




    Of those living in institutional settings, 36% reported that they had participated in self-advocacy. Of those living in community based residences, 27% reported that they had participated in self-advocacy, while 30% of those living in independent homes, 22% of those living with parents or relatives and 22% of those living in foster care, host-homes reported that they had participated. 26% of those living in other living arrangements reported participating in self-advocacy.

    However, rates of participation by residence also vary by state.

    For example, in one state, of those who live in institutions, 67% report having participated in self-advocacy, while in another state, 10% of respondents living in institutions report having participated in self-advocacy. As another example, in one state, of those who live in a parent or relative’s home, 40% report having participated in self-advocacy, while in another state, 11% of respondents who live in a parent or relative’s home report having done so.  

    The wide variation by state in living situation of those participating in self-advocacy is a challenge to those developing targeted outreach to encourage involvement in self-advocacy. We hope that individuals living in all types of living arrangements will participate in the Arc’s “Let’s Go Out!” campaign to raise awareness about DD.

    For more info on the rates of participation in self-advocacy in your state, take a look at the NCI Chart Generator ( or the Consumer Outcomes Final Report or your state report (both available here:

    **Please note that the 2012-13 data used in this blog are not yet available on the website.