BUILDING COMMUNITY HEALTH ACROSS ARIZONA Building Systems of Care for Children and Youth with Specia

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BUILDING COMMUNITY HEALTH ACROSS ARIZONABuilding
Systems of Care for Children and Youth with
Special Health Care NeedsTri-Regional Workshop
for Regions VIII. IX, X16-19 February
2003Portland, OR

• Presented by,
• Karen Burstein, PhD
• Arizona State University
• Southwest Institute for Families and Children
  with Special Needs

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Never doubt that a small group of thoughtful,
committed citizens can change the world . . .

• For it is only they who can.
  Margaret Mead

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ECOLOGICAL MODEL OF ASSESSMENT
SERVICE DELIVERY SYSTEMS
COMMUNITY
Medical home
CSHCN FAMILY
MICROSYSTEM
MESOSYSTEM
Adapted from BRONFENBRENNER, 1977
EXOSYSTEM
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Conceptual Framework

• We are dependent on the spheres of influence that
  surround us.
• The greatest source of influence is exerted from
  adjacent spheres.
• Spheres cannot be bypassed or circumvented.
• Conflict arises when bypass is attempted.

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• HENCE, IF WE WANT TO IMPACT/ SUPPORT/ SERVE
  CHILDREN WITH SPECIAL NEEDS AND THEIR FAMILIES,
  WE MUST WORK THROUGH THEIR COMMUNITIES.
• SERVICE DELIVERY SYSTEMS ARE BEST WHEN
  COMMUNITY-BASED AND FAMILY CENTERED.

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Capacity Building in Communities

• Belief that communities can be self determined
• Willingness to share resources and power
• Commitment of time to the change process
• Commitment to systems change as a result of
  community development

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Arizonas History of Community Development

• Since 1993, AZ Department of Health Services has
  committed in excess of 1.5 M to community
  development
• Parents were hired by OCSHCN as professional
  consultants and trained by specialists in
  community development
• In 1993, for the purposes of assessment, AZDHS
• OCSHCN by identifying 2 parents in So. Apache
  County to mobilize parents of CSHCN to identify
  service needs within their community
• Model of community forums/focus groups,
  face-to-face interviews, WEEFIM survey
  administered by families
• Currently, nine teams represent hundreds of
  families in communities in the diverse
  communities from the Mexican border, across 6
  Indian Nations, to the sixth largest population
  center in the country.

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Characteristics of Community Teams

• Lead by parents
• Representative of the community on variables of
  SES, ethnicity, religion, age, language,
  political affiliation
• Includes a range of service providers across the
  community
• Parents/consumers (YSHN) -Recreation/leisure
• Political leaders -Faith-based groups
• Educators -Insurance providers
• Health care providers -Behavioral health
• Disability service providers -Special interest
  groups

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Community Development Process

• Community development is not for dummies nor the
  weak of heart!
• Training Paying
• Mentoring Paying
• Guided practice Paying
• Mapping resources Paying
• Forging connections Paying
• Independent practice Paying
• Mentoring new leaders Paying

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Benefits of Community Development

• Culturally effective means of articulating the
  needs, wants and values of communities
• Distribution of labor across vast distances
• Investment buy-in the process and outcome
• Dynamic as needs change so does membership
• Continuous feedback loop to OCSHCN on the
  strengths and weaknesses of programs and projects

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Mantra of Community Development

• NOW, WHO ELSE SHOULD WE BE TALKING TO?

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Current Activities of Community Development Teams

• Infrastructure for healthy communities
• Medical Homes for Arizona CSHCN
• 10 communities are identifying physicians to
  participate in training and MH development
• 10 community teams conduct Participatory Action
  Research and test strategies to improve Medical
  Home services in their communities
• 5 communities teams conduct PAR to identify and
  test strategies for
• Streamlining care coordination
• Sharing data
• Universal application and eligibility
• Blending and braiding funding
• Community report cards

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Our Methodology- PAR

• A collaborative process in which the stakeholders
  drive the agenda
• Uses the scientific method to resolve community
  problems
• Based on the principle that knowledge is power
• A process of empowerment
• A means to translate practice into research
• And
• Research into practice

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Evidenced-based Problem Solving

• Learn the Steps of PAR
• Use the scientific method to solve
  community-based issues
• Collect empirical data
• Use these data to frame the decision-making
  process
• Engage participants at all points of problem
  continuum
• PAR is inclusive rather than exclusive

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Community Development

• PAR is responsive to the needs of the
  constituency
• PAR is culturally effective
• PAR is cost effective
• PAR results are sustainable

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Create a PAR Team

• Who are the stakeholders?
• Parents
• Youth with disabilities
• State service providers
• DDD, OCSHCN, AHCCCS
• Community service providers
• SEAs, government (mayors office), county
  health, local physicians, therapy providers

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STEPS IN PAR

• Select a pressing problem
• Find out what is known and not known about the
  problem
• State the problem in a testable format and form a
  hypothesis

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• Select a strategy for studying the issue or
  solving the problem and a method for collecting
  data about the problem, or the impact of the
  strategy for resolving it
• Implement the strategy and record data
• Analyze results
• Evaluate and interpret the results using graphing
  or statistical procedures
• Determine whether and what action is needed

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A WALK THROUGH PAR
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PROBLEM HYPOTHESIS

• Community Medical Home
• Problem(s) No medical home in our community

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WHAT IS KNOWN ABOUT THE COMMUNITY

• Community Team maps the resources of the
  community.
• Conduct an assessment of the demographics,
  medical services, community programs, faith-based
  organizations, service organizations, etc.
• Many communities in Arizona have or are
  completing Community Report Cards.
• Where are CSHCN currently receiving medical care?
• Who is providing this care?
• What, if any, are the problems with this care?

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CONDUCT AN EXPERIMENT

• Using one of many tools, survey the places that
  physicians and services providers who are
  currently providing care to CSHCN.

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EXAMINE YOUR DATA

• After collecting data from your surveys, prepare
  an analysis for the group, keeping in mind that
  the group consists of not only the surveyors but
  now those surveyed.
• What are the interpretations of these data?
• What impact do they have the different
  stakeholders in the PAR group?

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DEVELOP ONE OR MORE STRATEGIES

• Support an existing physician to move toward
  medical home goals.
• Recruit a new physician to the area.
• Support a local clinic to expand services to meet
  medical home goals.
• Create an agenda (list) for change in the
  community

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EXAMINE YOUR DATA AGAIN

• What are the results of the satisfaction survey?
• Where are the service gaps?

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EXAMPLES OF ACTION

• Community PAR teams meet monthly with
  physician/clinic manager for 1 hour share results
  satisfaction surveys completed by patients and
  tracking changes across the months.
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• Create resource digest for community
• Based on utilization numbers, recruit new
  provider to community.

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NOW- YOUR COMUNITY

• Who are the stakeholders?
• What are the natural linkages?
• What linkages need to be formed?
• Who will form them?

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And, to whom else should you be talking?

• Call us
• Southwest Institute for Families and Children
  with Special Needs
• 824 S. Mill Ave. 1
• Tempe, Arizona 85281-5603
• 480 965-0419
• info_at_ppmedhome.com
• www.ppmedhome.com