Improving Healthcare Access and Care Coordination for Individuals With Intellectual and Developmental Disabilities Through State Health Policy
Introduction
Individuals with intellectual and developmental disabilities (IDD) can experience significant barriers to accessing healthcare. These barriers may include communication difficulties, transportation, limited provider knowledge, inaccessible healthcare environments, difficulty coordinating multiple providers, and challenges recognizing and responding to an individual's unique healthcare needs. The Centers for Disease Control and Prevention (CDC, 2025) identifies these barriers as contributors to health disparities among people with disabilities.
Improving healthcare access and care coordination for individuals with IDD is an issue that is important to me both personally and professionally. I have worked with individuals with disabilities in different capacities throughout my career and have more than ten years of nursing experience. I also spent several years working in emergency nursing, where I saw how the hospital environment could be particularly difficult for individuals with IDD and sensory or communication differences. In addition, I am the parent of a child with cerebral palsy, which has given me firsthand experience navigating the healthcare system. These experiences influenced me to establish Integrity Nursing LLC, a Delaware nursing agency providing consultative nursing services to individuals supported through the Delaware Division of Developmental Disabilities Services (DDDS).
The purpose of this action plan is to identify strategies I can use as a nurse to advocate for Delaware policies that improve healthcare access, preventive care, and coordination for individuals with IDD.
The Healthcare Policy Problem
Individuals with IDD often have complex healthcare needs and may rely on families, direct support professionals, nurses, and other caregivers to help coordinate their care. When communication between these individuals and healthcare providers is inconsistent, important information can be missed. This can contribute to medication problems, missed appointments, delayed treatment, unnecessary emergency department visits, and preventable complications.
My experience as an emergency department nurse showed me how traditional healthcare environments can create additional challenges. Bright lights, excessive noise, long waiting periods, unfamiliar people, and repeated questioning can cause significant distress for some individuals with IDD. I saw situations where behavior could be interpreted as a behavioral or psychiatric problem when it could instead be communication of pain, fear, sensory overload, or another unmet need. Because of these experiences, I helped create a sensory room in the emergency department to provide a more appropriate environment for patients who experienced sensory overload.
My work with Integrity Nursing has provided another perspective. As a consultative nurse and CDDN, I see how healthcare coordination continues after a person leaves a physician's office or hospital. Nurses may need to coordinate with primary care providers, specialists, families, residential staff, support coordinators, and other members of the individual's team. Effective coordination can include medication oversight, preventive care, medical assessments, provider communication, staff education, and monitoring of chronic health conditions.
These experiences have demonstrated to me that improving healthcare for people with IDD requires changes at both the individual and system levels.
Policy Action Plan
My primary policy goal is to advocate for stronger healthcare access and care coordination for individuals with IDD through Delaware state health policy. My plan would focus on three areas: increasing IDD education for healthcare professionals, strengthening consultative nursing and care coordination, and improving communication between healthcare providers and community-based support systems.
The first step would be identifying and educating key stakeholders. These would include Delaware legislators, DDDS, healthcare organizations, nurses, nursing schools, individuals with IDD, families, direct support professionals, and disability advocacy organizations. Individuals with IDD and their families should be included because they are directly affected by healthcare policy.
The second step would be developing an evidence-based policy brief. The brief would explain the healthcare barriers experienced by individuals with IDD and provide practical recommendations. Research has demonstrated increased healthcare utilization among adults with IDD and the importance of improving access to appropriate healthcare services (Lauer et al., 2021). The CDC (2025) also identifies provider education, accessibility, communication, and partnerships as important components of improving healthcare for people with disabilities.
The third step would be legislative advocacy. I would request meetings with Delaware legislators and appropriate state officials to present the issue and proposed solutions. I would use my experience as an RN, CDDN, emergency nurse, and owner of a consultative nursing agency to provide examples of how policy affects healthcare delivery. I would also provide professional testimony and written information while protecting patient confidentiality.
The fourth step would be advocating for increased IDD education in nursing programs and continuing education. Nurses should understand how to communicate with individuals with different abilities, recognize baseline behavior, assess pain, address sensory needs, identify health changes, and work with families and direct support professionals. Increasing this education could help nurses provide more individualized care and reduce misunderstandings.
Finally, I would work with professional organizations such as the Developmental Disabilities Nurses Association (DDNA), disability advocacy groups, nursing programs, and health care professionals to facilitate those changes. Collaboration would enable the issue to be seen from more than one perspective or group.
Implementation and Evaluation
Implementation would begin with collecting evidence and writing a policy brief that describes the problem, current Delaware resources, gaps in care, and possible solutions. The next step would be meeting with policymakers and stakeholders to share the information, in professional groups, written testimony, and public testimony if necessary.
Success could be measured in preventive care, communication between healthcare providers and community-based supports, medication management, completion of healthcare appointments, and possibly reduced avoidable emergency department use. Feedback from people with IDD and their families would also be crucial in determining whether or not the changes actually improve their healthcare experiences.
Not every policy change needs to start with major legislation. More IDD education in nursing programs, better communication between hospitals and community providers, and more consultative nursing could all be meaningful steps toward improving healthcare access.
Conclusion
In order to expand access to healthcare and care coordination for IDD patients, healthcare professionals need to look beyond diagnosis and understand the individual’s communication needs, support system, and healthcare environment. I’ve worked as an emergency nurse, CDDN, parent of a child with cerebral palsy, and owner of Integrity Nursing, and have learned the importance of coordinated, person-centered care.
As a nurse, I am responsible not only to advocate for patients but also to identify problems and work toward changing the way in which the healthcare system is in place. I will be able to use my experience to make sure that we can better serve people with IDD by educating healthcare workers, improving care coordination, collaborating with stakeholders, and working with Delaware policymakers.
References
Centers for Disease Control and Prevention. (2025). Disability and health information for healthcare providers. https://www.cdc.gov/disability-and-health/about/disability-and-health-information-for-healthcare-providers.html
Lauer, E., Lindgren, S., Momany, E., Cope, T., Royer, J., Cogan, L., McDermott, S., & Armour, B. (2021). Health service utilization patterns among Medicaid-insured adults with intellectual and developmental disabilities. Journal of Ambulatory Care Management, 44(4), 293–306. https://doi.org/10.1097/JAC.0000000000000373
National Academies of Sciences, Engineering, and Medicine. (2021). The future of nursing 2020–2030: Charting a path to achieve health equity. The National Academies Press. https://doi.org/10.17226/25982