Supporters of Families with Sickle Cell Disease, Inc. (SFSCD)

PROJECT PURPOSE

SFSCD will serve the ?hub? of a system of care to facilitate access to area health and community-based services (?spokes?) for individuals and families with sickle cell disease (SCD). This best-practice client-support system will facilitate life course transitions and optimal care. The key feature of this interdisciplinary approach to care coordination is to increase access to healthcare, education, and social support services, where care coordinators manage and monitor an individual?s needs, goals, and preferences based on a comprehensive plan. Care coordination facilitates access to services, improves health care outcomes, builds self-efficacy, increases satisfaction for families and healthcare practitioners, and reduces costs associated with health care fragmentation, which can lead to under- and over-utilization of care. Though our project focuses on care coordination for the sickle cell population, comparable systems of care could be established to serve similar Oklahoma populations with complex healthcare and social support needs such as Children and Youth with Special Health Care Needs (CYSHCN), individuals with chronic medical conditions, and disabled adults. Collectively, these vulnerable populations have multiple underserved needs and often live lives that are under-resourced, difficult, and economically challenged. By providing enhanced care coordination, they will be able to live more productive and fulfilling lives.

EVIDENCE

As recommended by the National Academies of Sciences, Engineering, and Medicine in their ?Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action,? landmark report (2020), SFSCD?s system of community care will increase access to integrated services to help families manage their disease and to build self-efficacy and empowerment skills. SFSCD?s hub-spokes model aligns with the recommendations of the Federal Office of Rural Health Policy and the National Rural Health Resource Center. This care model has been successfully implemented in other U.S. care settings to improve culturally competent care and facilitate care management, transitions, and referrals, and follow-ups.

POPULATION DESCRIPTION

The population served of individuals and families living with lifelong diagnoses of sickle cell disease (SCD) and related inherited disorders often experience gaps in specialty care, the continuum of care and wraparound support. The impacts and challenges of Social Determinants of Health (SDoH) have been exacerbated by the additional challenges of the pandemic as families struggled to access healthcare systems that are not knowledgeable, culturally aware, or not fully competent in disease management. These families may experience feelings of frustration, anxiety, depression, withdrawal, loneliness, and abandonment in their healthcare outcomes. People with SCD experience a higher incidence of psychosocial complications which can occur throughout life. These complications may interfere with school attendance, limit college and job options, and reduce career opportunities. Covid-19 interfered with home-based delivery of services and with annual client family events. Our agency does not have electronic technology to work remotely effectively with clients ? nor are most of our clients well-equipped to use it. Our public-school clients often struggled with the challenges of remote learning. Implementation of our project will enhance our ability to serve clients remotely and help ensure our youth and young adult clients can pursue their education ? whether due to Covid or SCD crises.

PERFORMANCE MEASURING

Our cloud-based PlanStreet care management software system will be used track referrals for healthcare and social services, access to testing and vaccines, distribution of COVID-19 personal protective equipment (PPE), and provision of health education and care coordination services to achieve optimal health. We work to improve client health and well-being with individual-focused interventions and connection to community wrap-around supports. We will work with clients to improve health outcomes and achieve stepstone life goals. Our care managers will use a multidisciplinary approach to address the complex mental, physical, and social health needs of our clients, increase health knowledge, and strengthen resilience.

ONGOING INVESTMENT AMOUNT

$

ONGOING INVESTMENT DESCRIPTION

None

ONGOING INVESTMENT REQUIRED

One-time project will not need continued funding