Carla Epps, MD

Falls Church, VA

Inova Pediatric Center: A Multicultural Care Model

Purpose: Improve the health status of minority CSHCN by creating a replicable, multicultural, collaborative care medical home model for the community.

Activities: 1) Perform a needs assessment of CSHCN via surveys, parent interviews, and focus groups; and 2) determine resources required to meet needs identified, while also identifying community, state, and other resources available for replication. A plan will then be put in place on "how to access" appropriate resources for CSHCN.

Outcome: Data collected from the survey and focus groups revealed that increasing awareness in all 7 components of the medical home, especially access to care; family-centered, coordinated and comprehensive care was critical to our families. The results of the needs assessment helped to conduct telephone interviews to identify local/state resources and produce a state resource guide (in both English and Spanish) of available services for CSHCN and their families. The resource guide will serve as a tool for families on "how to access care" while also helping to increase medical home awareness. The long term goals for this project involves securing funding to promote a Multicultural Model of Care to help raise awareness levels of medical home initiatives for families and professionals at the community, state and national levels.

Lois Freisleben-Cook, MD

Williston, ND

Rural Medical Home Initiative

Purpose: Increase access to medical homes and specialized medical services for rural CSHCN.

Activities: 1) Utilize a wide range of methods including telemedicine, traveling teams and other innovative models of service delivery based on individual community needs and resources, to establish a medical home for every rural CSHCN. 2) Help plan for full inclusion for these children and their families into life in the community with seamless access to care.

Outcome: N/A

H. Garry Gardner, MD

Darien, IL

Medical Home Quality Improvement Project

Purpose: Develop a Quality Improvement Team that will meet monthly in a practice to improve the quality of care commensurate with the principles of the medical home model for CSHCN in DuPage County.

Activities: The team will develop a plan to improve quality of care for CSHCN. A facilitator will be provided by the Illinois Title V CSHCN program, (UIC Division of Specialized Care for Children) to help develop agendas, administer and analyze assessment tools, keep minutes to meetings and maintain momentum.

Outcome: A Quality Improvement Team was developed and included (3) parents, the assistant office manager who served as a care coordinator, and a primary pediatrician. The team was facilitated by a representative from the IL Title V Program. Their first goal was to complete a baseline and post-planning Medical Home Index and Family Index. Both indexes were used as a tool to assess the quality of medical home care at the practice and family levels. The results of the indexes indicated specific activities as well as identified areas the practice needed to plan for further development. The team put a plan in place to: a) define and identify CSHCN; b) develop a parent permission form, asking parents if they would like to speak with the care coordinator; c) develop a phone script for the receptionist making appointments; and d) develop a brochure to better explain the medical home concept. The long-range goals of this project are to implement their quality improvement plan at the practice-base level and be part of the IL Medical Home Project, which is to develop 6 pilot sites Medical Home programs to replicate to other pediatric practices in IL.

Wendy Hobson, MD

Salt Lake City, UT

Medical Home Access: The Patient's View

Purpose: Assess families' needs related to caring for CSHCN and barriers to accessing services.

Activities: Develop a survey for pediatricians that will assess whether families' needs vary from what pediatricians expect. The needs assessments of both families and pediatricians will create a better understanding of the gaps in the provision of medical homes for CSHCN with the intent of developing strategies to narrow those gaps.

Outcome: Many pediatricians in Salt Lake County utilized some relevant resources for CSHCN, but many more that would be appropriate were not being used. Most physicians wanted to know more about these resources. With regard to the Spanish-speaking community, most physicians were unaware of any resources other than the local children’s hospital.

Four focus groups with families of CSHCN (2 Spanish, 2 English) were conducted to understand the needs of the local community and to see if the needs were different for Spanish and English speaking families. Spanish-speaking parents felt greater isolation. All parents wanted to form an advocacy and support group with others in similar situations. One physician focus group was included to learn how to ask physicians to change their practice to better assist families. An Advisory Committee including Title V, local clinics, and community-based organizations has been formed to assist in implementing future project plans.

With the assistance of outside funding, the team established the Niños Especiales/ Familias Fuertes (Special Children/Strong Families) program, the first advocacy and support group specifically for Spanish-speaking CSHCN and their families in Salt Lake County. The project, a collaborative effort between key stakeholders in the community, will initiate parent support and advocacy groups for Latino CSHCN families.

Detroit, MI

Urban Minority CSHCN & Medical Home

Purpose: Build upon existing partnerships with families, family groups, University, Government and health plan partners to review strategies for family education and resource sharing to increase access to a medical home for CSHCN in Detroit.

Activities: 1) Identify CSHCN; 2) conduct two family focus groups on general satisfaction and information needs; 3) convene monthly family meetings; 4) convene monthly community partnership meetings; 5) develop a plan for establishing a culturally and linguistically appropriate resource library; and 6) write and submit grant proposals to expand and test methods of culturally effective medical home implementation.

Outcome: N/A

Kevin Karpowicz, MD

Schenectady, NY

Schenectady Promise: A neighborhood Medical Home

Purpose: Explore methods of collaboration between Schenectady Family Health Services (SFHS) and Dr. Karpowicz's pediatric office to expand the concept of the "Neighborhood Medical Home". to help with the positive development of youth in the community.

Activities: Working with consultants, the areas to be explored include: 1) development of a unified pediatric health service, 2) expansion of services into isolated neighborhoods, developing collaborative efforts within the community for broad health promotion efforts; 3) training of medical students & residents, and 4) collaboration with local homeless shelters to provide care and a medical home for homeless children.

Outcome: Many obstacles were encountered with trying to merge two very different types of medical care delivery systems. Despite these obstacles, progress was made. Areas of need and establishment of medical home sites were determined. Formal connections and mentoring was initiated with a family practice residency program;and collaboration with the local Department of Social Services was established to help merge the two systems. With the business and legal aspects of this merger completed, the project is moving on to the implementation phase. The project plans to seek additional funding through the Robert Wood Johnson Foundation and has already written a grant to help implement this merger. The long term goals of this project include the integration of health care delivery with the community infrastructure designed for the positive development of youth in their community.

David C. Kendrick, MD

New Orleans, LA

Improving Medical Home Access with Technology

Purpose: Look at the application of the DocSynergy Project (a HIPAA-compliant, web-based software system designed to improve communication among members of the health care team) to: 1) increase access to medical homes for CSHCN by facilitating a team-based approach to care, minimizing time and resource requirements, and 2) maximizing the primary care physician's access to specialists and ancillary support.

Activities: 1) Conduct a survey pf primary care providers and allied health professionals in the state to determine informational and technological barriers to medical homes; 2) conduct focus interviews to evaluate specific features and functions necessary in a software solution; 3) identify critical elements for the successful implementation of the system from two perspectives: a) the personnel and b) the hardware/software infrastructure and 4) seek funding sources for implementation of this program.

Outcome: N/A

Billings, MT

Optimal Care Coordination for CSHCN

Purpose: Assess the effectiveness of care coordination for CSHCN and their families in an urban pediatric clinic and a rural family practice.

Activities: 1) Assess the degree of care coordination needed for CSHCN via practice surveys, parent interviews and community focus groups; 2) determine what resources are necessary to provide optimal care coordination in practices; and 3) identify state and local resources to support optimal care coordination for CSHCN.

Outcome: This grant was to originally submitted to determine the effectiveness of care coordination for CSHCN and their families in an urban pediatric clinic and a rural family practice. After information gathered from focus groups showed case coordination as not a major problem for families, the grant switched focus. The new focus was now to assess knowledge about resources available to families as well as financial concerns. A comprehensive survey, which was developed with the state was sent to 2,000 families. The data will be used to develop programs for CSHCN at the state level and for applying for the MCH block grant.

Anda Kuo, MD

San Francisco, CA

Medical Homes for Diverse Underserved Children

Purpose: Development of a medical home model for CSHCN served by San Francisco General Hospital (SFGH). Of the seven components of a medical home, the most challenging for this project is access to care and care coordination.

Activities: Working with computer information systems and clinic administrators, the project will: 1) create a program to identify CSHCN, systematize their appointments, and collect encounter-based data; 2) conduct a needs assessment with both families and the community; 3) develop a plan to coordinate communication between collaborators and SFGH; and 4) write future grants for implementation of a pilot program.

Outcome: N/A

James C. Ledbetter, MD

Denver, CO

Improving Transitions for Youth with SHCN

Purpose: Bring together key participants in facilitating transitions to adult life for YSHCN.

Activities: Using focus groups and allowing the input of YSHCN and families as well as potential health care providers to identify barriers and illuminating preferences in the transition process, the team will make it possible to 1) improve the transition process and help empower adolescents with SHCN to achieve self-care and independence; 2) establish of a coalition among agencies developing transition policies to prevent parallel development but also promote a collaborative and interactive process.

Outcome: N/A

Mayra Quanrud, MD

Jamestown, ND

Families, Schools, and Medical Professionals Partnering for North Dakota's Children

Purpose: A team of parents, state Title V staff and a pediatrician will provide information to three rural communities' primary medical care staff, families and school personnel about the medical home concept. The three communities were chosen because each has 16% or more of the total school population receiving special education services.

Activities: An assessment regarding knowledge of medical homes and the need for medical homes will be sent out before each meeting. Results of the needs assessment will be shared at the meetings and the team will facilitate discussion regarding the findings.

Outcome: N/A

Lisa Samson-Fang, MD

Salt Lake City, UT

Bridging the Gap from Pediatric to Adult Health Care

Purpose: Increase access to medical homes for YSHCN by identifying barriers to transition experienced by providers and patients and develop strategies to address these barriers.

Activities: Using focus groups and surveys of patients, parents and providers to: 1) identify barriers to transitions; and 2) develop a training program that will provide education regarding transition issues, community resources, and specifics on how to foster self-advocacy and independence in young adult patients.

Outcome: This project identified and documented the barriers, issues and needs experienced by YSHCN, their parents and the health care providers who work with them as they transition from child centered to adult centered health care. The barriers identified were: inadequate communication with health care providers; lack of adult health care providers willing to accept YSHCN in their practices and lack of adequate health insurance. The plan is to apply for a CATCH implementation grant to develop strategies to: 1) address the barriers that were identified; 2) continue to expand the organization's resource list of health care providers who are willing to work with YSHCN and 3) offer transition training and dissemination of transition information to all types of health care providers.

Mary Schultz, MD

Peoria, IL

OSF Sisters Pediatric Medical Home Project

Purpose: Integrate the medical home model into OSF Sisters Healthcare Clinic's training curriculum for pediatric and medical/pediatric residents.

Activities: 1) Develop a Quality Improvement Team consisting of an attending physician, an office care coordinator, a resident, and at least two patients' immediate family members; 2) Meet monthly to identify barriers, as well as plans to overcome them; 3) develop a process with the care coordinator to overcome communication barriers that arise when patients see multiple providers. An immediate goal is to work with families to identify resources available to them and make sure medical/pediatric residents see the importance of a team approach to CSHCN and the concept of a medical home.

Outcome: The purpose of the Quality Improvement Team is to plan for practice improvements by blending parent insight, professional knowledge, and care coordination to build primary care medical homes. With the help of a project coordinator, the team was able to identify barriers in providing a medical home for CSHCN.

Three barriers identified were: 1) how to identify CSHCN in the practice; 2) communication with parents and other providers of CSHCN and 3) how to make appropriate resources available to families of CSHCN. To overcome these barriers the team is planning on 1) developing a color sticker option for their charts to help identify CSHCN easier; 2) developing a phone script to assist the staff in scheduling CSHCN and communicating with parents and 3) making appropriate resources available to families, by choosing focus on one diagnosis at a time and finding and making available resources to families with children with that specific diagnosis. Their future plans are to begin with the diagnosis of obesity/diabetes and provide BMI charts and other related healthy eating resources for families. The team then will tackle all the diagnoses for CSHCN in their practice and make available appropriate resources for each specific diagnosis.

Diane Straub, MD

Tampa, FL

Health Care Transition Program

Purpose: Develop a health care transition education program in Hillsborough County, FL.

Activities: 1) Conduct community forums to engage additional partners; 2) develop a provider survey to help clarify the barriers to transition; 3) conduct focus groups with youth, and families to further explore barriers to transition; and 3) disseminate report to community partners.

Outcome: This project hosted a community forum to help recruit participants for upcoming focus groups. Focus groups were then conducted with youth and families, education professionals (i.e. transition specialists) and health care providers to determine barriers related to transition issues. The focus groups helped to develop a plan for a transitions education and training program at both the school-based and provider levels. The provider training program will adapt the Every Child Needs a Medical Home transitions training component as part of a curriculum for pediatric residents in the management of CSHCN. The school-based program will include a pilot program for classroom instruction for high school students with special needs and staff training concerning health-related skills that promote independent living and self-determination. Given successful implementation at the pilot school sites, school-based instruction has the potential to be expanded to include all high school students with special needs in Hillsborough County, as well as replicated in other school districts throughout the state.