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Service Delivery Innovation Profile

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


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Snapshot

Summary

The Pediatric Practice Enhancement Project supports pediatric primary and specialty care practices in providing care to children and youth with special needs and their families within a medical home. The Pediatric Practice Enhancement Project places trained parent consultants directly in practices to increase both capacity and quality of care for children and youth with special needs. The parent consultants, who themselves are parents or family members of children and youth with special needs, offer families support, connection to other families, and knowledge of resources leading to improved health outcomes. Preliminary analysis has indicated that the program has reduced health care utilization and costs (including an 11-percent decline in overall costs) and improved physician-reported efficiency and knowledge of special needs services.

Evidence Rating (What is this?)

Moderate: The evidence consists of before-and-after comparisons of health care utilization and costs, along with post-implementation feedback from physicians on the program.
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Developing Organizations

Rhode Island Department of Health
Providence, RI
The Pediatric Practice Enhancement Project was developed by the Rhode Island Department of Health in collaboration with the Rhode Island Department of Human Services and several partners at the state and community level.end do

Use By Other Organizations

Communities in Washington, DC, and South Carolina have sought technical assistance from Pediatric Practice Enhancement Project in developing their own parent consultant programs.

The Alabama Department of Health and the Nebraska Medical Home Initiative implemented the program.

Date First Implemented

2003
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Patient Population

Vulnerable Populations > Children; Disabled (developmentally); Medically or socially complexend pp

Problem Addressed

The national New Freedom Initiative requires states to create a system to ensure that all children with special needs have access to a medical home by 2010.1 However, primary care physicians in community practice often have difficulty providing this medical home to children with special needs.
  • 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.

What They Did

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Description of the Innovative Activity

The Pediatric Practice Enhancement Project supports pediatric primary and specialty care practices that care for children and youth with special health care needs by providing onsite parent consultants who help connect families to community-based resources and support and access health insurance. All parent consultants are themselves parents or family members of children and youth with special needs and thus have personal experience in navigating the system of care. To date, approximately 2,300 families have been served by the program. Key elements include the following:
  • The Pediatric Practice Enhancement Project parent consultants and practices: The Pediatric Practice Enhancement Project 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 nonmedical 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.

Context of the Innovation

The Rhode Island Department of Health, Office of Special Health Care Needs (OSHCN) offers programs and services to the approximately 40,000 special needs children and youth under the age of 21 years who live in the state. The impetus for the program resulted from the State’s Title V Needs Assessment findings, which revealed the many challenges that physicians were facing in providing care to children and youth with special needs. Some of these challenges included time constraints, lack of staff, and poor reimbursement rates. Based on the State’s successful Early Intervention program model, Rhode Island decided to utilize parents and family members of children and youth with special needs (parent consultants) to assist pediatric primary and specialty care practices in serving these children and families.

Did It Work?

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Results

The Pediatric Practice Enhancement Project has reduced health care utilization and costs and improved physician-reported efficiency and knowledge of special needs services.
  • Lower utilization and costs: A retrospective longitudinal analysis of 2006 data (tracking utilization and costs of 77 Pediatric Practice Enhancement Project 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 the Pediatric Practice Enhancement Project enrollees fell by 56 percent.
    • Lower costs: Approximately 57 percent of individuals had lower health care costs after the Pediatric Practice Enhancement Project 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 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?)

Moderate: The evidence consists of before-and-after comparisons of health care utilization and costs, along with post-implementation feedback from physicians on the program.

How They Did It

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Planning and Development Process

Key elements of the planning and development process included the following:
  • Soliciting participation from physician practices: The Rhode Island Department of Health, Office of Special Health Care Needs 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 Rhode Island Department of Health, Office of Special Health Care Needs contracted with the Rhode Island Parent Information Network to recruit, hire, train, and supervise parent consultants. The Rhode Island Parent Information Network is a statewide nonprofit organization that helps families become advocates for the education, health, and socioeconomic well-being of their children.
  • Training: The Rhode Island Parent Information Network 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. The Rhode Island Parent Information Network also provides parent consultants with ongoing training and professional development.
  • Pilot testing: The Island Department of Health, Office of Special Health Care Needs piloted the Pediatric Practice Enhancement Project in 8 practice sites and later expanded the program to 24 sites.

Resources Used and Skills Needed

  • Staffing: The Pediatric Practice Enhancement Project has a program manager and 24 parent consultants who are hired, trained, and supervised through Rhode Island Parent Information Network. 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 Pediatric Practice Enhancement Project annual operating budget is approximately $835,000, consisting primarily of the salaries of parent consultants.
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Funding Sources

New Freedom Initiative; Neighborhood Health Plan; Rhode Island Medicaid Agency; SSI Title V Block Grant
The Pediatric Practice Enhancement Project is funded primarily by the Rhode Island Department of Health through a 3-year Federal grant from the New Freedom Initiative, which runs from May 2006 to April 2009. Other funding sources include a Supplemental Security Income (SSI) Title V block grant, a grant from Neighborhood Health Plan of Rhode Island (a private, nonprofit health plan), and participating pediatric practices, which pay a portion of parent consultant salaries.

The Pediatric Practice Enhancement Project was funded primarily by the Rhode Island Department of Health through a 3-year Federal grant from the New Freedom Initiative, which ran from May 2006 to April 2009. Current funding is less reliant on grants and more reliant on increased reimbursement from health plans. These funding sources include a Supplemental Security Income (SSI) Title V block grant, a grant from Neighborhood Health Plan of Rhode Island (a private, nonprofit health plan), and participating pediatric practices, which pay a portion of parent consultant salaries. The RI Medicaid Managed Care Program also supports the initiative through administrative quality assurance funds.end fs

Adoption Considerations

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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.

Use By Other Organizations

Communities in Washington, DC, and South Carolina have sought technical assistance from Pediatric Practice Enhancement Project in developing their own parent consultant programs.

The Alabama Department of Health and the Nebraska Medical Home Initiative implemented the program.

More Information

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Contact the Innovator

Deborah Garneau
Office Chief
Office of Special Health Care Needs
RI Department of Health
3 Capitol Hill, Room 302
Providence, RI 02908-5097
(401) 222-5929
E-mail: deborah.garneau@health.ri.gov

Colleen Polselli
Pediatric Coordinator
Office of Special Health Care Needs
RI Department of Health 
3 Capitol Hill, Room 302
Providence, RI 02908-5097
(401) 222-4615
E-mail: colleen.polselli@health.ri.gov

Innovator Disclosures

Ms. Deborah Garneau and Ms. Colleen Polselli have not indicated whether they have financial interests or business/professional affiliations relevant to the work described in this profile.

References/Related Articles

http://www.health.state.ri.us/programs/pediatricpracticeenhancementproject/index.php

Footnotes

1 New Freedom Initiative: fulfilling America’s promise to Americans with disabilities. Available at: http://disabilityworld.org/04-05_02/employment/nfi.shtml
2 The Pediatric Practice Enhancement Project: strengthening Rhode Island’s medical home infrastructure. Available at: http://www.health.state.ri.us/publications/brochures/PediatricPracticeEnhancementProject.pdf (If you don't have the software to open this PDF, download free Adobe Acrobat Reader® software External Web Site Policy.).
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Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: July 06, 2009.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: August 13, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: June 03, 2014.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.

Back Story
Parent consultants in Rhode Island’s Pediatric Practice Enhancement Project (PPEP) report numerous successes in helping families resolve issues related to the care of their children with special needs. These stories reveal how the consultants can assess the particular needs of each family and then make recommendations and service referrals that...

Read more