Transcript Meaningful Participation on Consumer Advisory

Meaningful Participation on
Consumer Advisory Committees
Joe Caldwell, Bethany Stark,
Sharon Hauss, & Gordon Richins
Technical Assistance Project
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Funded through ADD Technical Assistance contract
with AUCD
Project Goals
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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.
Participatory Action Research
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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.
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Members of COCA involved in all phases of research:
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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
Qualitative Methods
Three telephone focus groups
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15 UCEDD Directors or appointed staff
16 CAC members (11 family and 5 individuals with disabilities)
Online Survey
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11 individuals with disabilities
18 family members
20 other (UCEDD staff and other CAC members)
Two visits to UCEDDs and CAC meetings
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University of Kentucky
University of Wyoming
Five Themes
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Individualized Supports
Financial Supports
Coordination and Communication
Leadership Development
Values and Outcomes
Individualized Supports
Accessible meeting locations and environments
Communication accommodations
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Accommodations for individuals with intellectual
disabilities often less understood
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interpreters, captioning, assistive devices, alternative formats
Agendas and materials in advance
Understandable and jargon-free language
Support persons
Meeting monitor or “Keeper of Respect”
Respite, personal assistance services, transportation
Financial Supports
Stipends and honorariums
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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.
Coordination and Communication
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Many UCEDDs have hired coordinators for CAC
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Often individuals with disabilities or family members, sometimes
former CAC members
Often also COCA representatives
Assist with supports, ongoing communication
Effective communication is critical
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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.
Coordination and Communication
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UCEDDs have developed creative strategies
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Communication between UCEDD and CAC
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Special topic forums, diners, planning retreats, poster presentations
Training for staff on how to make presentations accessible to CAC
Communication among CAC
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Phone calls, video conferencing, list serves
Accommodations and access barriers to technology that make
communication challenging
Leadership Development
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Difficulty with recruitment was a common theme
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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!
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Ask more “seasoned” advocates for recommendations
Self-advocacy conferences
Younger individuals with disabilities
Mentoring new CAC members
Leadership Development
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Some CAC members challenged UCEDDs:
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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.
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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.
Leadership Development
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Mentoring and orientation of new CAC members
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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
Value and Outcomes
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Many CAC members viewed as most important support
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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.
Value and Outcomes
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UCEDD Directors play a key role in the value placed on
CACs and setting expectations for excellence.
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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.
Value and Outcomes
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Outcomes as a marker of value
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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
Discussion
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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