Family Voices

Serving Persons with Disabilities in Medicaid

Managed Care Conference

Cassie Johnston, information provided by Nora Wells

April 17, 2002

Family Voices National Coordinator of Research Activities

Family Voices

A national grassroots network of 40,000 families and friends speaking on behalf of children with special health care needs that provides:

• Information
• Education
• Support
• Advocacy

From Data to Action Project

• Data collected from managed care organizations (MCO) to improve understanding between families of CSHCN and health systems around the issues and barriers to family centered care
• Data collected earlier from families in “Your Voice Counts” to improve systems of care for CSHCN
• Forums on Managed Care and CSHCN
• Project funded by the David and Lucile Packard Foundation

MCO Interviews

• To learn how health care plans address areas of special importance for CSHCN
• To collect information about good ideas, interesting policies and exemplary programs
• To initiate relationships between health care plans and Family Voices
• Interviews with 41 MCOs each conducted by 2 family leaders
• Conducted between December 1998 and August 2001
• Interviews occurred in 12 states
• Participating staff from MCOs included:
  • medical directors
  • directors of quality improvement and member services
  • Medicaid managers
  • medical resource managers
  • case managers
  • CEO
  • plan’s lawyer

How Plans and Parents Selected

• Family leaders identified themselves as interested
• Plans identified by family leaders or Family Voices staff and others
• Contacts made--in some cases took a number of contacts

Findings: Identification of CSHCN

• Most plans indicated that they could identify some categories of CSHCN
• For a number of plans, their ability to identify CSHCN was based on contracts with Medicaid or SSI
• Most common approaches to identifying CSHCN included:
  • children who receive SSI
  • hospital use information
  • school district information
  • pharmaceutical use

Best Practices

One plan reported that it has recently undertaken a systematic effort to identify CSHCN, through the development of an algorithm that can be used to analyze claims and other administrative data. This method is being used to identify a "caseload" of CSHCN, and to begin to develop policies and programs to improve quality of care for these children. Early applications of the algorithm identified 18% of children enrolled in the plan.

Capacity to Provide Care for CSHCN

• Most plans described broad networks of health care providers and hospitals
• Many plans offered training to providers or had staff newsletters where CSHCN were included as a topic; several plans noted special training for case management.
• Several plans indicated that they have some specific treatment programs such as for diabetes or asthma care.

Primary Care and Referral Process

• Most plans reported parents allowed to select primary caregiver
• Some plans allowed specialists to qualify as primary care providers
• Some plans indicated that they allow standing referrals for specialty care
• A few plans did not require referrals for specialty care

Best Practices

• Some plans permit families to make a special request that a pediatric subspecialist be their child’s primary care provider.
• Plans have developed policies to pay primary care providers higher rates for providing care to CSHCN

Care Coordination

• Almost all of the plans offered care coordination or case management services, most often to children who meet certain diagnostic criteria.
• Most plans had provided case managed to a very small number of children.
• Most plans reported that families can request case management, however family survey showed few families knew this
• Plans described providing information about public programs and other services generally on a case by case basis

Best Practices

One managed care plan encourages primary care clinicians, including pediatricians, to screen for mental and behavioral problems by paying an extra fee for these screening and diagnostic services.

Procedures for Disagreement about Care Decisions

• All of the plans had written information about grievances.
• All but one of the plans had a formal appeal process.
• Some plans offered patient advocate services; 2 plans offered mediation procedures.
• Common areas of disagreement between families and plans were:
  • out of network requests
  • home nursing
  • denial or reduction of services
  • DME

Medical Necessity

• Many plans indicated that they follow Medicaid procedures (which vary by state).
• Many plans have written definitions and standards for medical necessity.
• Plans indicated complex definitions in determining coverage for habilitative vs. rehabilitative care; A few plans have specific definitions for children.

Best Practices

A plan described a patient advocate on staff who assist members in pursuing complaints or grievances.

Collaboration with Families of CSHCN

• Many plans indicated that they have advisory boards that include a family member of a child with special needs; few plans said that they had a separate advisory board for families of CSHCN.
• Most plans did not involve families in in-service training programs for staff.
• Very few plans paid parents as consultants for their involvement in the advisory board.
• Most plans did not appear to have significant relationships with parent organizations
• A few plans had consumers as voting members of appeals, grievance committees

Challenges Identified by Plans

• Identifying CHSCN
• Coordinating with public agencies
• Dealing with fragmentations across multiple payers
• Finding qualified pediatric providers in certain specialties
• Finding qualified providers for transition to adult care
• Balancing needs of purchasers and CSHCN
• Keeping informed of resources and supports

Your Voice Counts Findings

Parents of CSHCN indicated problems in the following areas:

• information on benefits and procedures in health plans
• denial of specialty services
• access to experienced specialists, especially PT, OT, speech therapy, home care, mental health
• access to adequate amounts of specialty care
• care coordination
• satisfaction with resolution of a complaint or appeal
• family involvement in advising health plans

Family Advice to Health Insurance Plans to Help Them Better Serve CSHCN

• Gain a greater understanding of children’s specific needs
• Listen to families, provide opportunities for family feedback
• Provide more information about child’s condition , plan benefits, other resources
• Have an identified person within the plan to help families of CSHCN
• Allow choice of pediatric specialists or the option to continue with a provider particularly important to the child
• Coordinate care with providers and outside resources
• Take less time for payment or approval of services
• Expand services and therapies covered

Suggestions for Plan Procedures from MCO Interviews

• Put in place standardized procedures; allow self-referral to identify CSHCN
• Help staff serving CSHCN become knowledgeable about resources for families.
• Improve care coordination between plans and other programs.
• Provide families with clear information on plan benefits and procedures and a person to help them navigate.
• Provide opportunities for families to advise, educate staff and help shape programs and policies.

Opportunities for Quality Improvement

• Focusing Attention on CSHCN
• Increasing Visibility of Case Management & Care Coordination
• Enhancing Supports for PCPs
• Working Together to Address System Needs

Potential Areas for Parent Involvement

• Parents of CSHCN on Advisory Boards, in-service training
• Parents as liaisons between plans and parent support and advocacy organizations
• Parents as consultant to health plans on program and policy design
• Parent-staffed health plan Family Resource Centers
• Family-friendly newsletter columns web-based information
• Parents getting health plan foundation grants,
• Parents participating in state-level policy discussions and initiatives around me

Outcomes

• Family leaders who participated felt they had learned a great deal
• Plans reported they were impressed with parent professionalism; learned lots and wanted more contact
• Both families and plans identified areas for potential further work together.
• Large number of managed care staff came to Family Voices forums.
• Plans asking for more contact and resources
• Family Voices coordinator and CSHCN staff providing in service training to MCO’s around the state

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