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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 Lynda Honberg

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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

lynda honberg

Lynda Honberg

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


Shared ResponsibilitiesBuilding 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


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


      • Consumers/families
in a complex health care system
In a complex health care system...
  • The quality of care for individuals is dependent on their knowledge of how to navigate the system,


  • The quality of the system of care is dependent on its knowledge of the needs and experience of its users.
why families are experts

low prevalence

use multiple systems



dependent on changing technology


high importance

both providers & consumers of care

need updated information

heavy users of health care system

Why Families are experts
why do it health plan perspective
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
why do it consumer perspective
Why Do It?Consumer Perspective
  • Improve quality of care
  • Share expertise - tell the truth
  • Eliminate adversary mentality
  • Help other families

“You can’t improve systems without our help.”

expectations of family advisors

To be heard

Respect & dialogue

Avoid labels

Allow challenges


Focus on family strengths

*Family Participation Statement-Advisory Council NHP, May 1999


Commitment to implement changes

Build systems that respect families as partners

Increase family supports within health plan

Expectations of Family Advisors*
  • Discomforts
  • Identifying consumers
  • Intensity of supports needed
  • Language & cultural diversity
  • Variability of preparation
  • Preparation of staff
  • Mentoring
ladder of consumer participation
Ladder of Consumer Participation*
  • Minimalist……………………..non-participation
  • Informing/Consulting…legitimate 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

supports for family partnerships
Supports for Family Partnerships
  • Training…on both sides
    • Orientation - role definition, purpose of partnership
    • Preparation for specific tasks
    • Collaboration
  • Mentoring
  • Reimbursement
    • stipend
    • travel, childcare
purpose of toolkit
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
introductory brochure
Introductory Brochure
  • WHO are CSHCN?
  • WHY identify CSHCN?
  • WHY invest in collaboration?
  • HOW can health plans improve quality of care?
  • WHAT is ROI?

CSHCN Screener


Clinical Risk Groups

Administrative data algorithm


Health Plan Checklist

Organizational Readiness Measures

Best Practices


Family Survey

Provider Survey

Family Participation Statement

Family Advisor job description

List of state Title V contacts

Reporting format for information to PCPs

how can health plans improve quality of care
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
how can families assist health plans to improve quality
Consumer Surveys

Identifying barriers within the system

Advisory Roles

Advisory Committees

Focus groups

Standing Committees




Staff/Consultant Roles

Review of written materials

Design outreach strategies

Training for health plan staff

Quality Improvement Teams

How can Families Assist Health Plans to Improve Quality?
for more information on shared responsibilities toolkit
For more information on Shared Responsibilities Toolkit...

family partnerships putting it into practice
Family Partnerships: Putting it into Practice

Children’s Choice of Michigan

  • Managed care program in Michigan for the Children’s 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.
children s choice promise to members
Children’s Choice Promise to members:
  • Family Centered Services
  • Community Based Care
  • Care Coordination
family centered care at children s choice
Family Centered Care at Children’s 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
challenges of member involvement
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
  • It’s hard work
benefits of member involvement
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
the good news
The Good News!
  • We have good role models for partnership:
  • Title V programs for
  • HIV and AIDS programs
  • Children’s Hospitals
  • Maternity Care
  • Early Intervention
multiple roles for member participation
Multiple Roles For Member Participation
  • Administrative staff
  • Member Services staff
  • Liaison to Community Groups
  • Board members
  • Quality Advisors
manager of family centered services
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
internal policy and practices
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
member education
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
member outreach
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
provider education
Provider Education
  • Review All Provider Ed materials
  • Contribute to provider education materials regarding Family-Centered, Community Based, Culturally Competent Coordinated Care, and Medical Home.
non medical resources and supports
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
national state and community relationships
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.
special projects
Special Projects
  • Identify areas of need for special projects
    • Medical Home
    • Transition
  • Identify funding sources for special projects
  • Develop and submit grant proposals
for more information
For more information

Go to:


Call: 1-800-566-1110

  • Office of Genetics and CSHCN – Title V
  • Office of Health Services – Medicaid
  • Maryland Physicians Care –MCO
  • AG’s Health Education & Advocacy Unit
  • American Academy of Pediatrics – MD Chapter
  • Nine parents of children with SHCN
  • Geographically distributed across state
  • Three placed with partner one day per week
  • All work in community
  • Ongoing training
parent training
Parent Training
  • On-site training once per month
  • Monthly conference calls
  • Weekly homework
  • Active listserv
  • Shared experiences
  • Partners train
  • Parents become trainers
initial placements
Initial Placements
  • Medicaid
  • Health Education and Advocacy Unit
  • Maryland Physicians Care
  • 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
health education advocacy
Health Education & Advocacy
  • Orientation
  • Private insurance
  • Consumer Hotline
  • Over 2000 complaints annually
  • Mediation/arbitration
maryland physicians care
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
other activities
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
questions and answers

Questions and Answers

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