Parent Consultants Help Families Who Have Children With Special Needs Access Needed Services, Leading to Lower Health Care Utilization and Costs

Problem Addressed

• Requiring a medical home: President Bush announced the New Freedom Initiative on February 1, 2001, as part of a nationwide effort to remove barriers to community living for people with disabilities. As a part of the New Freedom Initiative, the President issued Executive Order 13217, which charges the U.S. Department of Health and Human Services Health Resource Services Administration with developing a plan to achieve community-based systems for individuals with disabilities to be implemented by each state; one element of this plan is access to a medical home.
• Lack of time, resources to comply with requirement: Most physicians do not have the time or staff resources to help the families of children with special needs navigate the health care system or follow up with families to ensure that they are receiving the services they need.² Community pediatric primary and specialty care physicians in Rhode Island expressed concerns about providing a medical home for children and youth with special needs, citing coordination and scheduling difficulties, lack of knowledge about appropriate community resources, and lack of reimbursement for nonclinical services.

Description of the Innovative Activity

• PPEP parent consultants and practices: The PPEP employs 24 parent consultants who work in 24 practices across Rhode Island, with most consultants working in a practice for at least 20 hours a week. Participating practices include private primary and specialty pediatric and family practices, community health centers, and hospital-based clinics.
• Referrals and eligibility: When a family expresses concerns to a physician about basic needs (housing/food/utility), access to insurance, educational assistance, or other non-medical needs, the physician can refer the family to the parent consultant onsite. Flyers and marketing materials are also placed in waiting rooms to encourage self-referrals, and word-of-mouth also generates referrals to the program. There is no designated eligibility criteria for the program and all families serviced by the practice can access the parent consultant services. 
• Consultation: The parent consultant meets with the family immediately after the physician visit or at a later date that is convenient for the family. The parent consultant assists the family in accessing community services and supports to address the particular concerns/needs identified. The parent consultant develops a plan of action with the family and provides followup to ensure that the family’s needs have been met or to address any barriers encountered. Key elements of parent consultant role are described in more detail below:
  • Resource identification: Parent consultants access resource lists and have developed different areas of expertise based on their personal experience navigating the health care system for their own children; e-mail blasts allow consultants to network with each other to solicit suggestions for how to help a family resolve a particular need.
  • Service referrals: Parent consultants provide families with information and referral to the State’s Care Coordination System—CEDARR (Comprehensive Evaluation, Diagnosis, Assessment, Referral and Re-evaluation). CEDARR provides care coordination and access to direct services to children and youth with special needs. Other services to which families are commonly referred include educational, diagnosis-specific, parent-to-parent, advocacy/skill-building, equipment access, insurance, and basic needs resources support.

References/Related Articles

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Results

• Lower utilization and costs: A retrospective longitudinal analysis of 2006 data (tracking utilization and costs of 77 PPEP participants with at least 1 year of claims data before and after program entry) found that health care utilization and costs fell after entry into the program.
  • Lower inpatient utilization: Inpatient utilization among PPEP enrollees fell by 56 percent. 
  • Lower costs: Approximately 57 percent of individuals had lower health care costs after PPEP enrollment; overall costs fell by 11 percent among program enrollees, due primarily to a shift from expensive inpatient and institutional services to less costly professional and pharmacy services.
• Greater physician efficiency and knowledge: Physician reports suggest that the the program has enhanced their efficiency and knowledge of the special needs service delivery system, and has reduced scheduling delays and family waiting time for services.

Evidence Rating (What is this?)

Context of the Innovation

Planning and Development Process

• Soliciting participation from physician practices: The OSHCN sent a letter to all licensed pediatricians and family practitioners in the state to solicit interest in having a parent consultant located within the practice. In addition, a targeted outreach was conducted with pediatric primary and specialty care practices that were serving a large number of children with special health care needs. 
• Contracting with Rhode Island Parent Information Network (RIPIN): The OSHCN contracted with RIPIN to recruit, hire, train, and supervise parent consultants. RIPIN is a statewide nonprofit organization that helps families become advocates for the education, health, and socioeconomic well-being of their children.
• Training: RIPIN provides training to the consultants through an initial 2-week orientation to the system of care including Medicaid and community resource education and networking with experienced parent consultants. RIPIN also provides parent consultants with ongoing training and professional development.
• Pilot testing: The OSHCN piloted the PPEP in 8 practice sites and later expanded the program to 24 sites.

Resources Used and Skills Needed

• Staffing: The PPEP has a program manager and 24 parent consultants who are hired, trained, and supervised through RIPIN. Each parent consultant typically has 100 open cases and actively works with between 25 and 30 families at a time. Parent consultants have personal experience navigating the special needs system for their own families and the ability to translate that experience to other families. Parent consultants are culturally matched to the geographic area they serve and to the practice, with many speaking two or three languages. 
• Costs: The PPEP annual operating budget is approximately $835,000, consisting primarily of the salaries of parent consultants. 

Funding Sources

New Freedom Initiative; Neighborhood Health Plan; Rhode Island Medicaid Agency; SSI Title V Block Grant

Getting Started with This Innovation

• Hire consultants with personal experience: Clients highly value the peer-to-peer approach offered by the program and the personal experience of the parent consultant. Clients are also more likely to confide in parent consultants than in health care professionals about basic needs (e.g., housing or food) that are not being met. 
• Match consultants to practices: Matching the parent consultant’s language and cultural background to the practice will increase the likelihood that messages will be well received. Parent consultants should not be placed in the practice where their own child receives care.
• Ask practices to fund a portion of parent consultant salaries: Even a small contribution will help practices value the parent consultant as a meaningful part of the staff and to welcome them as partners who can help in serving patients and families beyond the grant period.
• Use group training and encourage networking: A parent consultant working in isolation will not be as effective as a group of consultants who receive coordinated training and who can tap into each other's expertise and experience when needed.

Sustaining This Innovation

• Track barriers facing families: Gathering information about common barriers can lead to system reform and improved coordination of services.
• Elicit input from multiple stakeholders: The program will be more likely to thrive if it elicits input and contributions from—and seeks to meet the interests of—physicians, government organizations, and payers.

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