Leslie F. Aiello, MD

DelValle, TX

Children with Special Health Care Needs in Del Valle, Texas

Purpose: Develop a systematic approach to assure access to community based, culturally competent primary health care and education for CSHCN in the Del Valle Independent School District (DVISD) by addressing identification of barriers in education and communication.

Activities: 1) Expand identification of CSHCN other than developmental delays in DVISD; 2) create environmental support for enrollment assistance and on-going system navigation for CHIP or Medicaid in collaboration with community members; and 4) create a link between the community, schools, clinics and adaptive technology to assure families have access to consults for normal life patterns.

Outcomes: An internal survey of charts was conducted of all existing clinic medical records to identify the number and type of children with special needs within the clinic’s current population. To help create better environmental support for parents enrolled in a managed care system, the team developed and is going to implement a “Promoters” program. This program is a community-based group that provides grass-roots health education and information to others in the community. A link was developed with the DVISD ChildFind program, which has resulted in “one stop shopping” for families of CSHCN allowing them to receive school qualification evaluations, well child visits, vision and hearing screenings, immunizations and assistance with transportation and other social concerns in one visit. The clinic has furthered their scope of practice and is now working with the University of Texas at Austin, School of Social Work in field training to help further educate professionals on assuring access to a medical home for CSHCN.

Richard Antonelli, MD, MS

Sterling, MA

Creating Medical Homes in Massachusetts: A Proposal to Plan Expansion of Medical Homes Across Multiple Communities

Purpose: Create a medical home model of care delivery for CSHCN across five under-served and needy communities in Massachusetts. 

Activities: Community-based primary care pediatric practices will: 1) work collaboratively with the Massachusetts Society for the Prevention of Cruelty to Children and with families serving as advisors to assess the needs of each of the communities served by constituent practices; 2) develop protocols for evaluating all medical and non-medical service needs of CSHCN; and 3) design procedures for coordinating care within the medical home. 

Outcomes: Through this grant, the team decided to concentrate solely on the first activity. The team was able to accomplish a strong linkage with the Massachusetts Society for the Prevention of Cruelty to Children (MSPCC) and providers from different regions across MA. The evolution of Medical Home in Central MA has led to a broad awareness of family and professional partnership. Through collaboration with MSPCC this grant gave this team the resources to connect with many social and health agencies, including WIC, school based programs, local hospitals and child service coalitions.

To accomplish the final two activities, the team applied and was awarded three other grants to help with the implementation of developing protocols and procedures for evaluating and coordinating care within the medical home. Future plans include further spreading of the medical home model throughout Central MA, engaging additional family partnerships, and enhancing Community-Based Organization (CBO) participation in coordinated care to CYSHCN within this model.

Jodi Cohen, MD

Philadelphia, PA

Transition to Adulthood: Finding a Medical Home

Purpose: Provide a medical home to YSHCN to facilitate the transition process guiding adolescents to adult health care and community-based service providers. 

Activities: Use focus groups of teens and family members to: 1) define deficiencies in the transition process unique to serving communities; and 2) assess the needs of community pediatric and adult health care providers. 

Outcome: The goal of this project was to develop mechanisms to improve communication and expand the network of medical homes for YSHCN. This goal was accomplished with an establishment of a partnership with the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) and the Dyson Initiative, which has allowed for transition education and consultation to other programs.

Lucy S. Crain, MD, MPH

San Francisco, CA

Finding Medical Homes for San Francisco Children with Special Needs

Purpose: Determine medical home resource capacity and create a collaborative community partnership to assure coordinated information sharing to help access continuity health care for CSHCN.

Activities: 1) Develop and conduct an assessment survey of pediatricians (primary care and sub- specialists) on key components of a medical home. The survey was modified from a national and Los Angeles AAP survey and was sent to a random sample of 476 physicians.

Outcome: The results of the survey revealed that locating and sustaining a medical home for children and adults with special health care needs is unnecessarily challenging in this community. Future planning goals include: 1) finding an alternative means of developing a resource directory; 2) enhancing reimbursement for pediatricians providing medical homes with utilization of reimbursement codes; 3) educating about medical home components to families/caregivers; and 4) exploring funding sources for development of an on-going medical home training institute for pediatricians and providers.

Laurie Gordon, MD

New York, NY

Mount Sinai Parent Partnership Project

Purpose: Identify, recruit and organize an interest group of parents of CSHCN within the Mt. Sinai pediatric primary care practice to become part of a Parent Advisory Committee to assist with improving access to care for CSHCN in the practice.  

Activities: Conduct focus groups with parents and senior management to: 1) improve access to and quality of care; 2) increase collaboration with community resources; and 3) enhance resident education. Information gathered from these focus groups will be used to create a resource center for families.

Outcome: This project was able to overcome the obstacle of recruiting parents of CSHCN for focus groups to eventually collect information to implement a plan to help improve access and quality of care for children in their practice. Through the feedback from both the parents and management team, it was decided that developing a parent resource center would be beneficial for both families and providers. The team is now in the planning phase for this center and will use the parents from the focus groups to increase parental involvement in the creation of the parent resource center in the practice.

A.Z. Holloway, MD

Montgomery, AL

Medical Home for CSHCN: Parent Partnership Model

Purpose: Develop a system to enhance communication, cooperation and satisfaction with health care between practice staff of the medical home for CSHCN, state CSHCN offices and parents.  Specifically identify barriers to providing a medical home within complicated systems and investigate innovative ways to overcome those barriers. 

Activities: Develop survey/focus groups to improve services of the medical home and enhance: 1) family education; 2) compliance with preventative health services; 3) early identification/referral to appropriate services; 4) coordination of care, and 5) family satisfaction with care.

Outcome: Hiring a Parent Coordinator was essential in meeting the project’s objectives. This practice/parent/state partnership utilized a parent consultant to enrich the medical home and enhance linkages and supports to families of CSHCN.  A plan was established to: stay abreast of changing issues and resources; enhance a local network of support; and research available literature to understand issues related to many chronic conditions and disabilities and share them with families.

Colleen Kraft, MD

Mechanicsville, VA

Medical Home Plus

Purpose: Create a highly replicable model of resources, training, technical assistance and support for CSHCN and their families within pediatric practices. 

Activities: Via survey, parent interviews, and focus groups: 1) assess the needs and concerns related to accessing services for children with disabilities in a practice; 2) determine resources to meet the needs identified (e.g. training, strengthened partnerships through more systematic approaches related to communication and coordination of services); and 3) identify existing national, state, and local resources available for replication and how to access resources.

Outcome: A parent survey was developed as a needs assessment tool initially but was found to be cumbersome to complete for parents so office interviews took place instead. The needs assessment helped to identify the resources/services to help coordinate care for families of CSHCN. The Medical Home Plus project is a model of community based health care that provides training, resources, technical assistance and support for children with special health care needs and their families. This project was able to be implemented through a grant partnership with United Way/Success by Six.

Nancy Mann, MD

Pacatello, ID

Children's Special Health Program Task Force

Purpose: Develop a statewide initiative with three components: 1) a parent education program about the primary medical home concept; 2) assessment and recommendation for early intervention and physician communication about developmental screening to promote a model for communication between the two groups; and 3) to adapt the primary medical home concept for use with Family Practice Residency Programs. 

Activities: 1) To plan and develop a survey for parents who attend clinics to determine if their child has a primary medical home; 2) compile survey information from each region to determine how many families had prior knowledge of the medical home concept and rate of referrals to primary care providers; 3) develop a survey for early intervention programs with representative sampling throughout the state to determine what and how information is shared with physicians of children who are screened for developmental/special health needs; and 4) develop a format for information sharing between physicians and early intervention programs.

Outcomes: The project provided information about the "medical home" concept to 1,625 families of CSHCN and 20 family practice residents. Plans are in place to further educate families and professionals about the importance of a primary medical home for all children. In addition, tools were developed to enhance care coordination and communication between community and state agencies.

T. Allen Merritt, MD, MHA

Bend, OR

Infants & Children with Special Health Needs in Rural Oregon

Purpose: Expand comprehensive services to infants and CSHCN living in remote communities in Central and Eastern Oregon. 

Activities: 1) Expand the network of physicians providing medical homes in the region; 2) establish a continuum of comprehensive services as well as create partnerships among the region's medical specialists; 3) provide support & facilitate quality control improvement; and  4) utilize the existing Central Oregon Hospital Network (CONet) telemedicine network for videoconferencing sessions.

Outcome: The goal of this project was to build partnerships with family physicians in the area who were willing to provide a medical home to NICU infants as they returned to the community. The developed partnerships improved communication between the specialist and PCP, which expanded the network of medical homes for infants and CSHCN in rural Oregon. A plan was developed for a virtual medical home to provide on-going support, information and resources to the partnering PCP's' offices providing a medical home to families of CSHCN. The CONet telemedicine network will be utilized in-kind for teleconferencing between physicians and specialists providing a medical home in rural Oregon and other remote communities.

Paul Parker, MD

Carlsbad, CA

Developing Healthcare Strategies for Low Income Children with Special Medical Needs

Purpose: Develop a model of healthcare delivery that will address the needs of CSHCN living in North County San Diego. Identify: 1) the specific conditions that contribute to the shortcomings in the current system; and 2) issues that are essential to the delivery of comprehensive, coordinated, family centered care to low income CSHCN in the community. 

Activities: Conduct a needs assessment to: 1) determine the strengths and weakness of the current healthcare delivery system for CSHCN; 2) document the number of pediatricians providing care to Medi-Cal care patients in the area; 3) inventory local resources for families of CSHCN; and 3) document non-medical resources that could be of potential benefit to the families of CSHCN.

Outcome: Surveys were developed as a needs assessment tool for both families and providers. The needs assessment helped to identify the strength/weaknesses of the relationship between the family and physician while also assessing the level of services provided by the physician. As a result of the needs assessment, a program plan was developed for a community-based resource center (The Special Kids Healthcare Consortium) to provide education, referrals and clinical resources for pediatricians providing a medical home for CSHCN in North County San Diego. The team will continue to work to find a funding source for the center.

Julia Pillsbury, DO

Willmington, DE

Medicaid Pediatric Medical Home Case Management Project for CSHCN

Purpose: Expand the network of physicians providing medical homes to CSHCN in the community.

Activities: 1) Develop credentialing criteria to insure that a true medical home is provided to Medicaid eligible children; 2) develop educational tools for providers explaining the process of becoming a designated medical home; and 3) identify CSHCN and utilize appropriate billing techniques.

Outcome: N/A

Francis E. Rushton, MD

Columbia, SC

South Carolina Medical Home Project

Purpose: Develop a series of "mentor medical homes" for CSHCN.

Activities: 1) Hire support staff; 2) develop statewide training enhancing medical home approaches to the care of CSHCN; and 3) identify four mentor sites to develop a model medical home concept.

Outcome: Hired a project coordinator to help develop statewide medical home training and presentations for meetings. Four sites were identified for mentor medical homes. All four sites are planning to work on self assessment tools as a means of increasing awareness of medical home issues.

Amy Schumacher, MD

Anchorage, AK

Providing Access to a Medical Homes in Rural and Remote Villages

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

Activities: Use a needs assessment survey to: 1) optimize medical care and family support for CSHCN; and 2) enhance the capacity of rural medical practitioners to provide services to CSHCN from more remote villages.

Outcome: During the planning phase, key partnerships formed and the scope of this project expanded. The original goals grew to encompass a more wide reaching plan of improving care for all children in the state of Alaska. A Special Health Care Needs Summit was held in place of a needs assessment survey and summit breakout group ideas/challenges were consolidated and prioritized. A Summit report and action plan has been created to enhance the capacity of rural medical practitioners to provide services to CSHCN.

Myrtis Sullivan, MD, MPH

Chicago, IL

Medical Home for Transitioning Adolescents Project (MeHTA)

Purpose: Improve transitioning to medical homes for adolescents with asthma and other chronic conditions.

Activities: Develop of a protocol to identify adolescents in the Chicago Public Schools who have asthma. Using focus groups (teens, providers, parents, and consumers): 1) explore experiences and issues pertaining to the transitioning process; and 2) develop a model transitioning program for adolescents with chronic disease.

Outcomes: Four focus groups were conducted to explore transitioning issues. Through the focus groups this team was able to form a Project Advisory Group (PAG) consisting of physicians and other care providers, a Chicago Public School counselor and nurse, the IL Title V Director and other public health advocates. The findings from the focus groups allowed the PAG to analyze the current barriers of a youth with asthma successfully transitioning to an adult care provider. The main barrier was youth not having a consistent medical home. According to the focus groups, accessibility and continuity of care were also found to be barriers. The findings show that youth are being seen more in the ER for their asthma management than by their PCP. With the help of the PAG, this team plans to apply for NIH funding to develop prevention/intervention strategies to improve self-management and successful transitioning among youth with chronic disorders.

Rodrigo Villar, MD

Tuscon, AZ

Enhancing Communication to Improve Care for CSHCN

Purpose: Explore ways to improve patient care and family satisfaction with services from both primary and subspecialty care providers. 

Activities: 1) Conduct focus groups and surveys of CSHCN families and primary/specialty care providers to identify needs, problems, and successful strategies to further improve services; 2) compile, analyze and make conclusions from the data; and 3) based on data results, use an advisory group of primary and specialty care physicians to develop a plan to enhance communication with a group of primary care physicians that currently follow a relatively large population of CSHCN.

Outcome: N/A