Meaningful Participation on Consumer Advisory Committees

1. Meaningful Participation on Consumer Advisory Committees Joe Caldwell, Bethany Stark, Sharon Hauss, & Gordon Richins

2. Technical Assistance Project • Funded through ADD Technical Assistance contract with AUCD • Project Goals • Identify supports that enhance the meaningful participation and effectiveness of Consumer Advisory Committees. • Develop case studies on innovative or best practices. • Provide recommendations concerning assessment. • Suggest possible areas to consider during reauthorization of the DD Act.

3. Participatory Action Research • Match with revised mission of COCA Build the capacity of local University Center Consumer Advisory Committees (CACs), including identifying needs for assistance, providing technical assistance, and disseminating information about exemplary and innovative practices. • Members of COCA involved in all phases of research: • Development of focus group and survey questions • Recruitment and Co-facilitation of focus groups • Coordination and visits to UCEDDs and CAC meetings • Identifying themes, preparing final report, dissemination

4. Qualitative Methods • Three telephone focus groups • 15 UCEDD Directors or appointed staff • 16 CAC members (11 family and 5 individuals with disabilities) • Online Survey • 11 individuals with disabilities • 18 family members • 20 other (UCEDD staff and other CAC members) • Two visits to UCEDDs and CAC meetings • University of Kentucky • University of Wyoming

5. Five Themes • Individualized Supports • Financial Supports • Coordination and Communication • Leadership Development • Values and Outcomes

6. Individualized Supports • Accessible meeting locations and environments • Communication accommodations • interpreters, captioning, assistive devices, alternative formats • Accommodations for individuals with intellectual disabilities often less understood • Agendas and materials in advance • Understandable and jargon-free language • Support persons • Meeting monitor or “Keeper of Respect” • Respite, personal assistance services, transportation

7. Financial Supports • Stipends and honorariums • Some UCEDD directors view as consultant relationship • Individuals with disabilities and family members feel it communicates respect and value • I think it just kind of makes you feel like you're valuable. You know, often for parents and family members, folks always want you in the room. And professionals are there and they are getting paid but you've not only taken a day off from your job but you've arranged child care and all the other things that go along with being away from your home. So it's nice to have that acknowledgement.

8. Coordination and Communication • Many UCEDDs have hired coordinators for CAC • Often individuals with disabilities or family members, sometimes former CAC members • Often also COCA representatives • Assist with supports, ongoing communication • Effective communication is critical • I think that effective committees are able to be informed about what is happening in the centers and have some say so in how programs are administered. A "token" committee is just in place to be compliant with the grant requirements and just meet due to specific requirements of the grant. This type of committee is not an informed one and makes no decisions.

9. Coordination and Communication • UCEDDs have developed creative strategies • Communication between UCEDD and CAC • Special topic forums, diners, planning retreats, poster presentations • Training for staff on how to make presentations accessible to CAC • Communication among CAC • Phone calls, video conferencing, list serves • Accommodations and access barriers to technology that make communication challenging

10. Leadership Development • Difficulty with recruitment was a common theme • Recruitment has been an issue for us. We have people with disabilities in the state who are really involved in what I would call high level advocacy efforts with legislatures and other important policy kinds of things. And they tend to already be serving on some type of board or within some type of advocacy consortium. So they are really very knowledgeable and meet all of the requirements, but we have a hard time recruiting those folks. They are pretty booked! • Ask more “seasoned” advocates for recommendations • Self-advocacy conferences • Younger individuals with disabilities • Mentoring new CAC members

11. Leadership Development • Some CAC members challenged UCEDDs: • You put some parents on panels because they fit or just because you are already comfortable with this parent. So, everybody puts them on committees and burns them out… We all need to get out of that comfort zone and really reach out. It's not fair to other parents who could be on committees and who have a lot more input and advice that they could give. • I think it is valuable to develop leadership in people who haven't had an opportunity to see the broader perspective, or the global picture … Parents are at the beginnings of their careers, perhaps, as activists or advocates. I think this is a wonderful opportunity for them. And, you know, had somebody not taken a chance on me at the beginning and brought me along I don't know that I would be where I am today.

12. Leadership Development • Mentoring and orientation of new CAC members • Pairing new members with other CAC members • Opportunities to attend state and national conferences • Orientation of history of DD Act and P&A and DD Council partners

13. Value and Outcomes • Many CAC members viewed as most important support • I want to emphasize that it is important to make family members feel like a significant part of the committee, making them feel welcomed and that their advice and recommendations are, indeed, taken into consideration… It is important to make them really feel like they're not just a token person, or they're there because you have to fill some numbers on the grant. But that they're really needed and their advice is really taken into consideration.

14. Value and Outcomes • UCEDD Directors play a key role in the value placed on CACs and setting expectations for excellence. • I think what we've been very fortunate in that we have a great director. I worry that when he leaves us that will truly impact the focus and function of this group. Because I think that he is a lot of the power and the initiative behind how we're so meaningfully involved. I think that we could be much more meaningfully involved with projects that are going on, but I think that he has tried very, very hard in a leadership position. That's why I am so excited about this project—putting things into policy and practice and evaluation will probably help to maintain things once people pass out of different positions.

15. Value and Outcomes • Outcomes as a marker of value • Ability to point to concrete examples of where input from CAC led to new initiatives or actions • Self-assessment by CAC • Meeting notes to connect CAC feedback to action • Time on meeting agenda to report back and reflect on how the CAC advice is being utilized

16. Discussion • Hopeful that by sharing information and perspectives across UCEDDs, this project stimulates some new ideas and action • Will be helpful to continuing adding other strategies UCEDDs are undertaking • ADD is using the framework of themes in this report and pilot testing a revised version of the MTARS Program Operations and Practices Checklist