Family Partnerships: Improving Quality of Care for Children with Special Health Care Needs in Manage

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Family Partnerships Improving Quality of Care
for Children with Special Health Care Needs in
Managed Care Plans

• July 17, 2003
• Sponsored by the Division of Services for
  Children with Special Health Care Needs

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Lynda Honberg

• Division of Services for Children with Special
  Health Care Needs,Maternal and Child Health
  Bureau

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Shared Responsibilities Building Partnerships
between Health Plans and Families Caring for
Children with Special Health Care Needs

• Susan G. Epstein
• New England SERVE
• July 17, 2003
• MCHB Webcast

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Why Build Partnerships?

• Responsibility for assessing and improving the
  quality of care is shared by all stakeholders.
• Health plans
• Purchasers
• Providers
• State agencies/public policy makers
• Researchers
• and...
• Consumers/families

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In a complex health care system...

• The quality of care for individuals is dependent
  on their knowledge of how to navigate the system,
• and
• The quality of the system of care is dependent on
  its knowledge of the needs and experience of its
  users.

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Why Families are experts

• CSHCN
• low prevalence
• use multiple systems
• public/private
• chronicity
• dependent on changing technology

• Families
• high importance
• both providers consumers of care
• need updated information
• heavy users of health care system

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Why Do It?Health plan perspective

• Belief in real benefits of consumer expertise
• Leadership - Champion
• Purchaser requirements
• Environmental incentives
• Consistent with mission
• Importance of specific population
• Limitations of consumer satisfaction tools

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Why Do It? Consumer Perspective

• Improve quality of care
• Share expertise - tell the truth
• Eliminate adversary mentality
• Help other families
• You cant improve systems without our help.

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Expectations of Family Advisors

• Process
• To be heard
• Respect dialogue
• Avoid labels
• Allow challenges
• Family-centered
• Focus on family strengths
• Family Participation Statement-Advisory Council
  NHP, May 1999

• Outcomes
• Commitment to implement changes
• Build systems that respect families as partners
• Increase family supports within health plan

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Challenges

• Discomforts
• Identifying consumers
• Intensity of supports needed
• Language cultural diversity
• Variability of preparation
• Preparation of staff
• Mentoring

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Ladder of Consumer Participation

• Minimalist..non-participation
• Informing/Consultinglegitimate participation
• Partnership.shared decision-making negotiation
• Delegated Power.directly linked to policy
  making, control, governance
• adapted from Arnstein, SR, A Ladder of Citizen
  Participation, Journal of the American Planning
  Association, vol 35, no.4,July 1969, pp. 216-224

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Supports for Family Partnerships

• Trainingon both sides
• Orientation - role definition, purpose of
  partnership
• Preparation for specific tasks
• Collaboration
• Mentoring
• Reimbursement
• stipend
• travel, childcare

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Shared ResponsibilitiesToolkit for Health Plans
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Purpose of Toolkit

• Get attention of health plans
• Identify CSHCN as a population
• Make a business case for investing in quality
  improvement
• Provide range of tools/resources to improve
  systems of care for CSHCN

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Introductory Brochure

• WHO are CSHCN?
• WHY identify CSHCN?
• WHY invest in collaboration?
• HOW can health plans improve quality of care?
• WHAT is ROI?

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Tools

• Identify
• CSHCN Screener
• QuICCC-R
• Clinical Risk Groups
• Administrative data algorithm
• Improve
• Health Plan Checklist
• Organizational Readiness Measures
• Best Practices

• Collaborate
• Family Survey
• Provider Survey
• Family Participation Statement
• Family Advisor job description
• List of state Title V contacts
• Reporting format for information to PCPs

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How Can Health Plans Improve Quality of Care?

• Information for families
• Simplify access to care
• Enhance coordination
• Match resources to needs
• Help families navigate system
• Promote best practices

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How can Families Assist Health Plans to Improve
Quality?

• Consumer Surveys
• Identifying barriers within the system
• Advisory Roles
• Advisory Committees
• Focus groups
• Standing Committees
• Grievance
• Quality
• Ethics

• Staff/Consultant Roles
• Review of written materials
• Design outreach strategies
• Training for health plan staff
• Quality Improvement Teams

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For more information on Shared Responsibilities
Toolkit...

• http//www.neserve.org/publications/srt_overview.h
  tml

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Family Partnerships Putting it into Practice

• Childrens Choice of Michigan
• Managed care program in Michigan for the
  Childrens Special Health Care Services
  population.
• Serves any child who meets the state requirements
  determined by their qualifying diagnosis, and who
  elect to participate.
• Contract with Title V requires family
  partnerships.

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Childrens Choice Promise to members

• Family Centered Services
• Community Based Care
• Care Coordination

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Family Centered Care at Childrens Choice

• Respects critical role of family in caring for
  children with special needs.
• Family approval of IHCP required.
• Education and Information sharing
• Consumer staff requirements
• Members as Advisors

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Challenges of Member Involvement

• Unnatural Alliance
• Requires a shift in the power base
• Unfamiliar Territory, new way of doing business
• Requires staff and financial resources
• Its hard work

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Benefits of Member Involvement

• Adds expertise families are experts in
  receiving services
• Provides up front evaluation
• Shared Responsibility
• Economic and operational efficiencies
• Powerful marketing tool
• Creative problem solving

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The Good News!

• We have good role models for partnership
• Title V programs for
• HIV and AIDS programs
• Childrens Hospitals
• Maternity Care
• Early Intervention

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Multiple Roles For Member Participation

• Administrative staff
• Member Services staff
• Liaison to Community Groups
• Board members
• Quality Advisors

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Manager of Family Centered Services

• An employee of DMC who was enrolled in CSHCS or
  has a child who is/was enrolled in CSHCS
• Monitors quality of care and ease of delivery
• Monitors policy and procedures
• Assist family in role as advocates
• Member education
• Monitors member appeals and grievances
• Provider education on Family Centered Care

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Internal Policy and Practices

• Review all policies and procedures
•  Participate in Senior Mgmt Team
•  Participate in Clinical Improvement Team
•  Monitor member appeals and grievances
•  Participate in Quality Advisory Committee
•  Staff support to members on Board
•  Conduct annual member satisfaction survey

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Member Education

• Editor of Member Newsletter
• Monitor Member listserv
• Monitor and update website
• Develop, review and maintain member handbook, and
  other documents for members
• Conduct educational seminars for member families
  on topics related to CSHCN
• Assure that member ed methods and tools promote
  and support family centered, culturally competent
  practice

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Member Outreach

• Community Forums 
• Family Groups with Title V Parent Participation
  Program
• Member marketing materials development and
  maintenance
• Link with existing family groups and
  organizations Family Voices, Arc Michigan, CAUSE

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Provider Education

• Review All Provider Ed materials
• Contribute to provider education materials
  regarding Family-Centered, Community Based,
  Culturally Competent Coordinated Care, and
  Medical Home.

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Non-medical resources and supports

• Monitor and disseminate community resource guide
• Develop guidance material on steps to access
  community based supports such as respite,
  waivers, special education services, etc
• Research and disseminate information to local
  care coordinators on non-medical supports for
  CSHCN
• Assist families in obtaining medically necessary
  services that are not covered benefits

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National, State and Community Relationships

• Participate in local initiatives for CSHCN i.e.
  CHM Parent Professional Advisory Committee
• Participate in state level initiatives for CSHCN,
  i.e. CSHCS Advisory Committee, Michigan Family
  Voices, Michigan Hospice and Palliative Care
• Participate in national initiatives for CSHCN,
  i.e. Family Voices, American Academy of
  Pediatrics Committee on Children with
  Disabilities, National Center on Financing for
  CSHCN, etc.

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Special Projects

• Identify areas of need for special projects
• Medical Home
• Transition
• Identify funding sources for special projects
• Develop and submit grant proposals
•  

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For more information

• Go to www.childrenschoicemi.com
• or
• Call 1-800-566-1110
•  

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Family PartnershipsThe Maryland Family Access
Project

• Grace Pushparany Williams

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Partners

• Office of Genetics and CSHCN Title V
• Office of Health Services Medicaid
• Maryland Physicians Care MCO
• AGs Health Education Advocacy Unit
• American Academy of Pediatrics MD Chapter

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Trainees

• Nine parents of children with SHCN
• Geographically distributed across state
• Three placed with partner one day per week
• All work in community
• Ongoing training

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Parent Training

• On-site training once per month
• Monthly conference calls
• Weekly homework
• Active listserv
• Shared experiences
• Partners train
• Parents become trainers

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Initial Placements

• Medicaid
• Health Education and Advocacy Unit
• Maryland Physicians Care

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Medicaid

• Orientation to all divisions/activities
• Special Needs Advisory Committee
• Communication/EPSDT subcommittees
• MCO enrollment cards
• Review material from parent perspective
• Policy formation
• Develop own project

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Health Education Advocacy

• Orientation
• Private insurance
• Consumer Hotline
• Over 2000 complaints annually
• Mediation/arbitration

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Maryland Physicians Care

• Resource for MPC parents
• Family Outreach for members with SHCN
• Participate in CSHCN team meetings
• Attend Consumer Advisory Board (CAB) meetings
• In-service to case managers CAB
• Develop managed care primer for parents

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Other Activities

• Survey of Pediatricians
• Place in community pediatricians offices
• Advise parents on managed care issues
• Training for families in navigating health plan
  advocacy for change
• Additional community contacts
• Evaluation data collection

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Questions and Answers

• Division of Services for Children with Special
  Health Care Needs,Maternal and Child Health
  Bureau