Medical Home Project Abstracts

Maternal and Child Health Improvement Project Abstract

PROBLEM:

At first glance, it appears that children with special health care needs in foster care have an abundance of resources and a number of people who are there to make sure that their special health care needs are met.  Both the foster parent and biological parent may be involved in different situations in the child's life, along with a guardian ad litum (court appointed child's advocate) and surrogate parent (child representative appointed through the Part C Early Intervention for Infants and Toddlers with Disabilities or the Part B Special Education programs).  The child's automatic coverage through Medicaid and the required financial commitment for needed services by the local Department of Social Services should also be available to cover the costs of special health care needs.  Finally, there are a number of professionals who play a key part in meeting the needs of a child in foster care.  The public sector providers such as the foster care social worker, medical care providers, early intervention or school personnel, Children's Specialty Services, public health (or mental health), and private providers (including mental health therapists, home health care personnel, specialty medical services) may all play a role in meeting the child's need.

Unfortunately, with so many players, multiple possible funding sources, and a number of services that may be available or needed, it can be easy for a child to fall between the cracks.  Questions and issues arise that indicate the need for a coordinated, collaborative, family-centered system of care for children in foster care.

GOALS AND OBJECTIVES:

The goals of the project are to: 1) build a family/professional collaborative partnership that bridges the barriers that prevent coordinated and comprehensive, health care and other needed services for children in foster care with special health needs; 2) develop a video and guide on the family/professional collaboration model; 3) develop a package of training materials using the family/professional collaboration partnership; 4) disseminate the package; and 5) evaluate the materials and project.

METHODOLOGY:

The Caring Community for Children in Foster Care Project will develop a community-based model for collaborative and coordinated health care for children who have special health care needs.  A Design Team composed of representatives from local and state child welfare agencies, health care providers, workers, related foster care advocates and foster parents will convene regularly to develop a system that builds upon the strengths, resources and needs of the many players that are part of the life of a child in foster care.  This model will merge existing best practices with what will work for culturally diverse foster children in Fairfax County.

COORDINATION:

The project has coordinated it's efforts through partnerships with the Virginia Department of Social Services, the Fairfax County Department of Family Services (DFS), the Health Department, the American Academy of Pediatrics, and other state, local, and community based programs.  These parternships have been demonstrated through continued Design Team representation, membership on the Health Profile workgroup, and feedback on project activities and materials. 

EVALUATION:

Progress toward completion of the project's goals and objectives are monitored by an ongoing plan of evaluation which includes formative and summative evaluation activities, and collection of health related outcome indicators. A Design Team and National Advisors advise and guide the project activities as well as the evaluation process throughout.

EXPERIENCE TO DATE:

In Year Three of the Project, experience gained in the first two years is helping to enhance current activities.  The project is revising activities based on input from foster parents, interviews with physicians and health providers, the design team, and adults formerly in foster care.  The video, “Fostering Health in the Foster Care Maze”, has been completed, and the development of study guides for foster parents, social workers, and providers is underway.  A Health Profile prototype is being piloted with Fairfax County DFS in the Reston Virginia area. The Foster Care Parent Mentors are actively working with families, while the project team is heightening awareness about the program.

KEY WORDS:

Maternal and Child Health Improvement Project Abstract

PROBLEM:

The concept of the medical home was developed in recognition of the “new morbidity”(Sia, 1992) and the importance of coordinated, family-centered, community-based identification and care (Sia & Breakey, 1989).  While leadership has moved the medical community forward in understanding the medical home, the vision remains unfulfilled for CSHCN.  Barriers include:  1) poor communication and lack of cultural congruity among families, physicians and other service providers; 2) lack of knowledge of eligibilities for services; and 3) inadequate reimbursement for service coordination activities.

GOALS AND OBJECTIVES: 

Goal 1. Develop capacity for culturally competent, empowering family-professional partnerships in health/medical practice in three communities.  Objectives: Case conferencing protocol to promote family professional partnerships and identify systems barriers will be developed; Physicians will develop practical, culturally competent office procedures and communication skills; Families of CSHCN, service providers, and physicians will have a common understanding of the family-professional collaboration in health/medical practice. Goal 2. Assure an integrated system of services in each community that provides the functions of the medical home Objectives: Health professionals will understand eligibility criteria, identification activities, services resources, and referral processes; Barriers to the integrated system will be identified. Community groups will develop strategies to provide the integrated system.  A state-level group will develop strategies to overcome systems and financial barriers.  Goal 3. Evaluate the effectiveness of the integrated system of services for a medical home.  Objectives:  Families and professionals will identify outcome indicators:  Implementation, family and professional satisfaction, family functioning, and child health outcomes will be evaluated.  Goal 4. Develop and disseminate a monograph to allow copying of successful protocols and strategies.  Objectives:  A culturally competent, family friendly monograph that meets professional standards, will be developed. 

METHODOLOGY: 

Malama Pono will work at the state level with managed care organizations and public agencies, and at the community level with family-professional partnerships.  Malama Pono uses six methodologies to achieve project goals and objectives: family/professional case conferences, direct work with individual physician practice associations, facilitation of and participation in groups, information collection and analysis, accessing existing expertise, and dissemination through presentations and reports.

COORDINATION: 

Malama Pono coordinates with Title V and CSHCN State agencies to develop a parent needs assessment and co-develop a template for the IFSP on-line to support statewide services.  Malama Pono also coordinates with Head Start and State Medicaid EPSDT to develop a training plan for physicians to complete Head Start medical forms to enable tracking of CSHCN data sets.

EVALUATION: 

Processes will be documented and outcome data from existing sources will be collected to evaluate project effectiveness.  Outcomes measured will include child health and family functioning indicators.  A service-testing approach will evaluate the success of the family-professional partnership in each community.

EXPERIENCE TO DATE: 

Year Three’s most significant accomplishment was the evaluation adapted from R. Foster, PhD, and I. Groves, PhD, service testing methodology, which is a case-based review of a process used to appraise the status of children and the functioning of the several service systems in meeting the needs of children and families.  A sample of 15 children was selected from the Malama community. Record reviews were conducted, semi-structured individual interviews were made with service providers and family members, and the information was synthesized to describe the status of child and profile the performance of the service system.  Patterns of strengths and weaknesses in service system performance can be identified and used to inform system change to better meet the needs of the consumer.  Findings were positive: Twelve of the 13 children were within the acceptable range on the child-status indicators while two system performance indicators fell below acceptable range—Planning and Implementation of Support Services.  The most significant product was the website www.medicalhomehi.com

Maternal and Child Health Improvement Project Abstract

A.   PURPOSE:

The mission of the National Center of Medical Home Initiatives for Children with Special Needs is to work in cooperation with the federal Maternal and Child Health Bureau to ensure that children with special health care needs (CSHCN) in the US have access to a medical home by: developing educational and advocacy materials that address barriers to medical homes for CSHCN and improve the ability of pediatric health care professionals to overcome these barriers; convening national workgroups to respond to policies and issue recommendations that benefit CSHCN; creating and disseminating evaluation tools that assess outcomes; and establishing and supporting a national contact network.

B.   GOALS AND OBJECTIVES:

GOAL 1:        

Contribute to changes in and development of policies that benefit CSHCN

• Obj 1.1   Convene national workgroups to promote collaboration and consensus.

• Obj 1.2   Develop and disseminate meeting proceedings, reports, and other materials.

• Obj 1.3   Support Title V programs in addressing medical home performance measures.

GOAL 2:       

Increase knowledge and skills among professionals who care for CSHCN 

• Obj 2.1   Develop and disseminate training materials and resources.

• Obj 2.2   Publicize/promote replicable models for providing medical homes to CSHCN.

• Obj 2.3  Create and assist with local application of educational and advocacy materials.

• Obj 2.4   Evaluate the impact educational and advocacy materials.

GOAL 3:       

Demonstrate outcomes of the medical home concept.

• Obj 3.1   Develop and disseminate tools that define the medical home concept.

• Obj 3.2   Assess practices and attitudes in providing a medical home to CSHCN.

• Obj 3.3   Consolidate/publicize best practices nationally.

GOAL 4: 

Support and expand a national network of child health professionals who are involved in efforts to ensure CSHCN have access to a medical home.

• Obj 4.1   Develop/disseminate resources, and provide technical assistance to network.

• Obj 4.2   Facilitate information-sharing among medical home providers.

• Obj 4.3   Expand linkages of network with other community-based national networks.

• Obj 4.4   Maintain a continuously updated clearinghouse of resources.

C.  METHODOLOGY:

An Advisory Committee will work closely with the MCHB in planning for, implementing, and overseeing all activities of the National Center. The objectives will be achieved by publishing educational and advocacy materials; conducting training programs; providing resources and technical assistance; convening national workgroups to respond to policies and issue recommendations; creating and disseminating evaluation tools; and maintaining a national contact network.

D.   EVALUATION:

A full-time evaluations specialist will assess the impact of all activities by administering surveys at and after educational events; conducting focus groups among health care professionals and families; developing periodic surveys that assess the impact of program materials on behaviors, practices, and attitudes in caring for CSHCS; disseminating tools that help Title V CSHCN assess the extent to which CSHCN have medical homes; and providing reports on the status of National Center initiatives.

E.   EXPERIENCE TO DATE:

During Year 1, program staff were hired and began to fulfill the objectives: administer the Every Child Deserves a Medical Home training program; provide technical assistance to those who have participated in the training program and/or who are involved in efforts to ensure CSHCN have access to a medical home; finalize evaluation tools that are specific to physicians, parents, and administrators; hold a meeting among the MCHB Medical Home and Integrated Services Grantees; hold a meeting among international physicians and parents in preparation for the International Congress on Serving CSHCN in the Community; solicit and evaluate best practices in providing a medical home to CSHCN from professionals nationwide; submit for publication the report of the Task Force on Newborn Screening; assist in the review and publication of the Year 2000 Position Statement of the Joint Committee on Infant Hearing (JCIH); develop hearing screening fact sheets for physicians, parents, and administrators; develop an enhanced user-friendly website with links to collaborators; and analyze and advise on national and local issues impacting the delivery of services to CSHCN.

F.  KEY WORDS:

Children with Special Health Needs, Families, Managed Care, Medical Home, Pediatricians, Title V Programs.

Maternal and Child Health Improvement Project Abstract

Problem

Alaska’s geography presents limitations to the delivery of services.  The lack of a road system isolates most communities from urban areas where health care is delivered.  Many remote villages lack even the most basic amenities such as running water.  Much of Alaska, including our state capitol, is reachable only by boat or plane.

Like most states, Alaska has a fragmented service delivery system.  A relatively transient population, along with a high turnover rate among agency staff, exacerbates this problem.  Because Alaska has few training programs in special needs related disciplines, many professionals are recruited from out-of-state, leading to unfamiliarity with Alaska’s system not only for the families, but also for some of the professional staff who serve them.  However, in spite of the vast geographic size of the state, Alaska’s population is small and agency staff and parents know one another well.  Collaboration is common and accepted.

Goals and Objectives

Goals of this project are as follows:  1) To collaborate with families of children with special health care needs at all times in the development of products and models which are culturally competent; 2) To create a family centered model of care coordination between early intervention services and the medical home, for replication both statewide and nationally; 3) To build capacity for primary physicians to act as medical homes offering family centered primary and specialty care and supportive services;  4)  To provide parent navigation in sub-specialty clinics in Anchorage and regional hubs, linking the medical home with community based services, 5) Distribute products, protocols, and prototypes to providers for replication and 6) To develop a plan for sustainability.

To support these goals, SSG developed objectives, which will result in development of a replicable protocol for care coordination.  This will establish a procedure for linking families to services at the time of entry into the system and orient medical home staff to the Alaska system.  Publication of “Raising Children with Special Health Care Needs” will aid families in accessing services.  Parents will be involved at every step, from conceptualization to implementation, and at all levels in the agency staff and board.

Methodology

SSG’s model of parent navigation links medical assessments to community-based services.  A parent navigator works with families before, during and after medical appointments to assist with coordination of other medical care, take notes during office visits, offer support, and assist families in following up with any recommendations.  Care coordination is provided on an interim basis, until the family is well linked to supports within their community.

Coordination

Stone Soup Group maintains a close partnership with Alaska’s Title V and Children with Special Health Care Needs and key players in Alaska’s pediatric health system including families of children with special health care needs, pediatricians and private health providers, Indian Health Service, Children’s Hospital at Providence, and Medicaid.  Our Parent Navigators work closely with the Early Intervention providers, school staff, physicians, and many developmental disabilities service provider agencies.  Other collaborators include Alaska’s University Affiliated Program, Alaska’s developmental disabilities planning council, and our statewide parent training and information program.  We participate in the statewide Fetal Alcohol Syndrome Steering Committee, the Autism Alliance, a subcommittee of the All Alaska Pediatric Partnership to address issues of concern to families of children with special health care needs, and in the statewide coalition working on Alaska’s Children’s Health Insurance Program--Denali KidCare. 

Evaluation

The evaluation component of this project will be completed in collaboration with the State Title V agency through the Epidemiology/Evaluation Unit and will measure, through pre and post testing, parents’ perceived needs for and enrollment in services.  All surveys and responses will be confidential with no individual identification reported.  The evaluation component will be voluntary on the part of training participants. 

Experience to Date

Stone Soup Group provided parent navigation services at pediatric sub-specialty clinics.  We created and printed a simple guide to aid families in learning about and accessing services and developed materials for presentations to medical and community providers and families.   A Parent Navigation Curriculum was printed and training was provided in Juneau, Soldotna, and Fairbanks.

Key Words

Family Centered Health Care, Family Professional Collaboration, Parent Professional Communication Family Support Programs, Medical Home, Service Coordination, Early Intervention, Alaska Natives, Developmental Disabilities, Children with Special Health Needs