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 PA 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
  projectputting 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