Partnering Parents with Practices

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Partnering Parents with Practices

• Christy S. Blakely
• Family Voices Colorado

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Parent Leadership and Advocacy

• Parents are a catalyst for change
• There is NO substitute for the Parent perspective
• Parents today are working at the national, state,
  and local level to affect change
• Parents need professionals to encourage their
  participation
• Professionals need parents for their perspective
• Parent come with valuable skills
• Change can either be top down or bottom up
• Zero to Three, November 2004

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Why Do Parents Get Involved?

• They believe the issue is important to them and
  their children/family.
• They believe they have something to contribute.
• They believe that they will be listened to and
  their contributions respected.
• They believe their participation will make a
  difference.

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Benefits to Parents/PracticeWhen Families Serve
as Partners

• Benefits for Families
• Improves services
• Meaningful change
• Share w/other parents
• Significant Contribution
• Satisfaction giving back
• Network
• Expand knowledge, skill

• Benefits for Practices
• Improves planning
• Helps address mission
• Increases knowledge skill
• Job performance
• Fresh perspective
• Added allies for CSHCN
• empathy understanding

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What makes you (parents/guardians) feel valued
by practice partners?

• When thoughts and suggestions are appreciated.
• When changes are made due to my input
• When input is respected valued
• When Im seen as an equal partner /expert
• When my perspective knowledge helps team
  learning
• When providers learn our language and help us
  learn theirs.

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Colorados Model
Parent Partners
Practice
Practice
P 3
Lead Parent Convener
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NICHQ Model
Parent Partners
Practice
Practice
Faculty includes a Parent Partner
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Step by Step

• 1. Set goals
• 2. Regularly scheduled meetings with families
• Meet with other parents to share ideas and work
• Implemented Suggestions
• Recommended time studies
• Resource books in English and Spanish
• Creating Care Plans Care Plan books
• Completing Care Coordination Conferences
• Tips and Tricks ( a document created)

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Sharing the Successes

• Parent Activities
• Care Partnership Support Community
• Disability specific events asthma, Down
  Syndrome, and others
• Resource materials and notebooks
• Care Plan Activities
• Action plans for specific populations
• Surveys
• Culturally and linguistically appropriate
  materials
• Support groups
• Focus groups
• Increased appointment time
• Hotlines for providers
• Decision Support-
• Fax back forms for referrals
• Building connection and relationships

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Sharing the Successes, continued

• Parent Activities
• Health Systems
• Planning and meeting
• Building relationships within the office
• Coding, billing and reimbursement activities
• Identify parents for Medical Home Involvement
• Bulletin Board system
• Involve Parents in practice planning
• Questionnaires
• Delivery System Design
• Brochures and Posters
• Transition planning
• Disability specific action plans
• Track referrals
• Reduce Emergency Room visits

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Finding Savvy Parent Partners

• Look for the parent who..
• Initiatives record keeping and charting
• Brings educational materials to the visit
• Asks about their childs diagnosis/disability
• Is proactive about care
• Follows through with recommendationsLook for
  parents who have the ability to see the greater
  good for ALL children

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Barriers Impacting Parent Involvement

• Lack of a provider champion in the office
• Staffing changes
• Time Restraints
• No consistent meeting time (inflexible)
• Lack of communication
• Lack of understanding of the goal
• Lack of clear direction for project
• Lack of specific tasks for families to engage
• Funding for parents (childcare, travel, etc.)

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Encourage the Practice to Ask These Questions

• What would the practice team like to accomplish?
• How are we doing from the consumer point of view?
• What are the goals for the practice?
• What activities are the parent partners
  interested in doing?
• Do you feel engage? If not, why?

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Providers Report Problems

• Identifying parents
• Asking parents
• Finding willing parents
• Knowing how to engage them
• Knowing what to ask them to

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Providers Report Problems

• Identifying parents
• Asking parents
• Finding willing parents
• Knowing how to engage them
• Knowing what to ask them to
• Parents Report..
• Parents are thrilled to be ask!
• Honored to be involved
• Have suggestions ready
• WANT to give back

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What Does It Take To Be a Parent Partner?
Individual Self-Advocacy

• Knowledge
• Rights of self and of children
• Processes to secure those rights
• Parents role in the system (education, health,
  human services, etc.)

• Skills
• Fact-finding
• Documentation
• Fact-organizing
• Effective Communication (written and verbal)
• Research/how to seek out essential information
  and resources
• Analyze facts against laws/rights

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What Does It Take To Be a Parent Partner? Peer
Advocacy

• Knowledge
• Rights of others
• Processes to secure those

• Skills
• Listening skills
• Capacity to provide support to others
• Not substitute own judgment for judgment of
  peers
• Empathy
• Collaboration

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Parents like a power strip, are only useful if
plugged in
Just PLUG them in.