Consumers: Their potential as program participants

1
Consumers Their potential as program
participants

• Eda Valero-Figueira, PhD
• Health Resources Services Administration
• HIV/AIDS Bureau

2
Ryan White CARE Act Consumer Participation

• Ryan White Comprehensive AIDS Resources
  Emergency Act
• Federal program for the treatment and support of
  individuals living with HIV disease
• Legislative mandate includes active
  participation of consumers in development,
  implementation and evaluation of programs

3
Consumers in RWCA programs

• Consumers as program volunteers (advisory boards,
  outreach workers, peer counselors)
• Consumers as program staff (family and youth
  advocates, outreach workers, administrative
  positions)

4
What consumers bring

• First hand knowledge
• Trust of peers
• Clear understanding of needs
• Connectedness to target population
• Cultural competence
• Reality check

5
Critical issues

• Need to tailor consumer participation to the
  specific populations served (diversity)
• Need to train consumers and help them develop
  skills needed for meaningful participation
• Training to include exposure and mentoring at the
  local, state and national levels (meetings,
  trainings, participation in local, state and
  national events)

6
Critical issues (Contd)

• Volunteer and staff positions must be clearly
  defined beforehand
• They must be created according to program needs,
  not because of federal expectations
• Appropriate training, support and supervision
  must be provided

7
Critical issues (Contd)

• Staff must receive training and be included in
  the decision making process in order to enlist
  their cooperation and support of consumers as
  staff or volunteers
• Attention must be given to issues of
  confidentiality and boundaries
• Consumers must have clear expectations and a
  regular supervision schedule must be in place

8
The role of the HAB

• Promote consumer participation through Guidance
  expectations and grant funding policies
  (reimbursement of expenses, inclusion of
  consumers in meetings)
• Keep an ear open to consumer concerns (site visit
  forums and other means of input)

9
The role of the HAB

• Provide technical assistance to grantees and
  consumer groups
• Provide trainings for consumers (RWCA,
  leadership, peer advocacy, research)
• Currently developing a Best Practices Guide, to
  be published later this year

10
Contact information

• Tel. [phone]
•  5600 Fishers Lane, 7A-30
• Rockville, Md 22387
•  evalerof_at_HRSA.gov