Adults with intellectual and developmental disabilities (ID/DD) experience healthcare disparities, including increased rates of many health conditions,1 difficulty accessing care, and many unmet healthcare needs, even if they have access to care.2 Their unique healthcare needs and challenges are often exacerbated during disasters and emergencies. The COVID-19 pandemic highlighted increased health disparities for people with ID/DD, such as reduced access to in-person care, problems obtaining prescriptions, and challenges using telehealth and personal protective equipment. Many have experienced reductions or loss of direct support professionals and support services for their residential, employment, transportation, and recreational needs. Many patients with ID/DD turn to their primary care team to assist in planning for and overcoming barriers in disasters and emergencies.
Primary care teams are challenged with a lack of resources and time and find it difficult to care for ID/DD patients who suffer from care fragmentation between care management agencies and healthcare systems. In addition, the lack of registries and population health modules that support this small, yet complex, group of patients adds a burden to the clinicians and caregivers.3
Working with a large group of self-advocates and advisory panel members from many healthcare and advocacy groups, including members of the Society of General Internal Medicine SGIM (the authors), The National Alliance to Advance Adolescent Health created a toolkit to support primary care teams in assisting patients with ID/DD plan for disasters and emergencies.4 This toolkit includes two tip sheets for primary care teams and individuals with ID/DD. The sheets provide guidance on items to consider and advice on using a quality improvement process to implement the tool in medical practices. Although these sheets are designed with individuals with ID/DD in mind, a similar approach would likely benefit many other patients with complex health needs who suffer physical and mental disabilities in adulthood.
The key steps to implementing an emergency preparedness plan for ID/DD in a primary care practice are as follows:
- Choose a disaster emergency care plan for use in your practice. Many templates are available with links in the primary care team tip sheet (pages 4-6 of the toolkit). You can review these and decide which ones are best for your practice.
- Find the population. One approach would be to search your electronic medical record for ICD10 diagnosis codes connected to ID/DD and create a registry to track your progress.
- Identify your team. We recognize that primary care is a team-based effort. Not all the work for this will be done by the physician. Identify key staff members who will assist in this quality improvement process and assign roles so that everyone can contribute to improving patient care and support the improvement effort. Care team members, such as social workers and community health workers, may be better positioned to help patients navigate community resources and address social needs.
- Create or update the patients’ medical summary. A medical summary is a brief document summarizing medical history and diagnoses, medications, allergies, the patient’s care team, and other essential information that would help any medical provider know a patient’s health needs. This should be shared with the patient and ideally stored in the EMR portal.
- During a routine visit, ask, “Do you have a disaster emergency care plan?” If they have one, ask them to bring it so you can review it and add it to their chart. If they do not have one, offer a template and ask them to begin to fill it out so you can review it at a future appointment or with another of your medical team members. Additionally, give them the tip sheet designed for adults with ID/DD and their families (pages 7-17 of the toolkit).
- Discuss legal issues, wellness, and self-care. Legal issues may include clarifying whether they have supported decision-making, power of attorney, or guardianship document. If they do, this should be included in the emergency care plan and in the medical record. Wellness and self-care issues may include identifying programs or people to help address self-care needs in a disaster or emergency setting.
- Assess the need for communication assistance. We recommend noting the communication assistance needs of your patients with ID/DD in your medical record. Additionally, we recommend discussing how to maintain communication between you and your patients with ID/DD in a disaster or emergency where standard options may not be available, notably if your patient can use any form of telehealth.
- Start with a pilot effort, assess and refine your process, and continue using quality improvement methodology. As with any quality improvement process, next steps will be determined by what you learn after assessing your efforts.
This toolkit provides the necessary information to guide primary care teams in improving their patients’ care and preparation for emergencies or disasters. This is important for those most likely to experience adverse health and wellness effects in emergency or disaster situations, such as those with ID/DD. As we look to bridge equity gaps in care, we want to highlight the care gap for this population that historically suffered stigma and isolation. Our practices aim to be inclusive and provide equitable care, advocate for our patients and identify our barriers, and note the lack of time, funding, training in GME, and cultural sensitivity. The COVID-19 pandemic, wars, climate change, and economic struggles continue to challenge our patients and us every day. We do not want to forget our most vulnerable; some can’t even talk to express their pain and basic needs. We encourage all internists to review this article and consider how to implement it in their practice.
- Croen L, Zerbo O, Qian Y, et al. The health status of adults on the autism spectrum. Autism. Oct 2015;19(7):814-23. doi:10.1177/1362361315577517.
- Nicolaidis C, Raymaker D, Dern S, et al. Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community partnership. J Gen Intern Med. 2013 Jun;28(6):761-9. doi:10.1007/s11606-012-2262-7. Epub 2012 Nov 21.
- Selick A, Durbin J, Casson I, Lee J, et al. Barriers and facilitators to improving health care for adults with intellectual and developmental disabilities: What do staff tell us? Health Promot Chronic Dis Prev Can. 2018 Oct;38(10):349-357. doi:10.24095/hpcdp.38.10.01.
- White P, Schmidt A, McManus P. The National Alliance to Advance Adolescent Health/Got Transition. Emergency Preparedness Toolkit for Young Adults with Intellectual and Developmental Disabilities and their Primary Care Team. https://gottransition.org/resource/emergency-preparedness-toolkit-yas-with-iddd. Accessed January 15, 2023.
Advocacy, Clinical Practice, Health Equity, Medical Education, SGIM, Vulnerable Populations
Dr. Hanks (Christopher.firstname.lastname@example.org) is an associate professor in the Division of General Internal Medicine at The Ohio State University College of Medicine and the medical director of the Center for Autism Services and Transition (CAST) at The Ohio State University. Dr. Alkhairw (email@example.com) is an assistant professor at the Icahn School of Medicine at Mount Sinai and the clinical director of the Safety Net Clinic at Elmhurst Hospital/NYC Health +Hospitals.
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