One of the most vulnerable populations in the US, are Children with Special Health Care Needs (CSHCN). They suffer for chronic health conditions, and in many cases will deal with multiple chronic conditions effecting profoundly their quality of life.
Disparities in Care
Nearly 1 in 5 U.S. children now have a chronic condition requiring above-mentioned routine services or special health care services. These children with special health care needs are especially vulnerable to weaknesses in the health care system. Data from the most recent Maternal and Child Health Bureau National Survey of Children's Health show reveals that such children experience a wide range of disparities in health status, in accessing health care and quality of care, and in school related outcomes compared to other children.
National Statistics Including National Costs
Children with Special Health Care Needs (Data from the National Survey of Children with Special Health Care Needs) :
•10.2 million children in the United States have special health care needs; that number represents 14 % of all U.S children.
•More than a fifth of U.S households with children have at least one child with special needs.
•16 % of these children are reported to not receive all the services they need;
•More than 94 % of these children have a regular source of care when they are sick. For 78 % this is a private doctor's office; for 13 % it is a clinic or health center; and for almost 4 % it is another setting.
•12 % of families required mental health care or counseling related to the child's medical, behavioral or other health conditions; and
•24 % of families reported that a parent had to stop working or cut work hours to care for their children.
The following is a short version of a case study conducted by a Metropolitan organization serving children with epilepsy. The following abstract represents a model that now is being applied by some health centers and clinics to help children with other chronic health condition such as autism.
Building a system of care that is sustainable and replicable for children with special health care needs (CSHCN) is a multi-faceted process that requires consideration of existing health care systems, accessibility to care, provider’s availability, family’s cultural background and linguistic barriers, and community-based resources. Children with special health care needs faced many different barriers when accessing comprehensive health care services. One of the most common obstacles identified is the lack of a sustainable system of communication between their pediatrician and specialist.
The implementation of a community needs assessment and parents’ focus groups were conducted in order to identify specific gaps in the delivery and access of care for CSHCN. The project targeted four different medical institutions in a metropolitan area serving different ethnic groups. The project was divided into three years; first year focused on the Caribbean – Hispanic, the second year on the Asian-Chinese, and the third year on the Caribbean-non-Hispanic, all communities received the needs assessments the first year of the project. Four major approaches were used to address identified needs; Model of Quality Improvement and Breakthrough Series Approach, Medical Home Model Approach, Cultural and Linguistic Competence Approach, and Community Needs Assessment. We selected a random sample of 166 CSHCN, 70% of children were assigned to a medical home provider. There were significant improvements in the quality of care that children with special health care needs received from their medical home provider. It increased ongoing communication in a three-way system, family-medical provider, medical home provider-specialist, and specialist-medical home provider. It also increased family’s’ knowledge about their child’s chronic health condition and trust with their health care providers.
Some Strategies for Sustainability:
•Implemented Memorandum Of Understanding (MOU) practice between medical home providers and specialists
•Used train the trainer model
•Identify a champion
•Engaging administrators and decision makers
•Set up utilization of social media such as Twitter and Facebook
•Utilized Table Topic Model with a community partner to identify progress and continue areas of improvement
•Created a learning collaborative
•Set up monthly conference calls and in person meetings with collaborative members
•Capitalize on current financial resources
•Created a community-based services directory in Chinese and for Hispanic families.
•Used the cultural broker model
•Create and implement an organizational structure model
•Trained medical staff an service coordinators on cultural competence
•Provided technical support to community partners to start and sustain parent support groups
•Established a collaborating partnership between community partners/providers
Some Strategies for Expansion:
•Create a model that can be replicated for different or similar projects
•Create a system that will allow access to previous resources and information
•Identify specific geographical areas where the project can be implemented
•Identify organizational structure that will support the expansion
•Identify other populations that will benefit from project outcomes
•Once capability and sustainability are built within the organizational structure, prepare for expansion
•Seek for additional or new funding
•Keep a log of project activities for practical replication
The success of the project was due to the collaboration by many providers and parents that were part of the collaborative. Any quality improvement project cannot be done in a vacuum, people need to get involve and make changes. One of the well knows methods that was used to monitor and measure the different objectives of the project was the PDSA Model helping the collaborative team keep track of the progress and at times set back.
In Summary, some of the lessons learned during the project relate to, engaging providers and parents at the very early stages of the project. Explain collaborative members their roles and expectations. Reach out to existing partners to be part of the project and show them the benefit of their involvement. Predict on loosing staff along the way and plan for it. Tap into agency's internal resources such as collaborating with other departments, leverage on other similar project to help you promoting and enhancing your project. Reach out to external organization that are working on similar project for collaboration.
Author
Helen E. Dao was the Primary Investigator (PI) for this project. She is also the President and CEO at her company Dao Management Consulting Services, Inc. (www.daoconsultingservices.com) Helen has been working on Quality Improvement projects, cultural diversity, and public health strategies development for 11 years. You can follow her on Twitter @ http://twitter.com/#!/daoconsulting and @ her blog http://daoconsultingservices.blogspot.com/
Email: helen@daoconsultingservices.com
Tel. 201-448-2046/800-905-1208
Grantee, The Epilepsy Foundation of Metropolitan New York, 2010. www.efmny.org
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