For an ideal HCT, full engagement of the patient, the medical home (physicians, nursing staff, and care coordinators), and the patient’s family (including the primary caregiver or guardian) is critical. In addition to preventive care visits and management of chronic disease, additional domains that require explicit attention in transitioning young people with IDD include health insurance, transportation, employment, and postsecondary education.
Young people who have special health care needs and receive high-quality HCT demonstrate improvements in adherence to care, disease-specific measures, quality of life, self-care skills, satisfaction with care, and health care utilization.7TABLE 13 lists resources identified by Berens and colleagues that are helpful in facilitating the transition.
Teach and practice disability etiquette
Societal prejudice harms people with IDD—leading to self-deprecation, alienation from the larger community, and isolation from others with IDD.8 To promote acceptance and inclusivity in residential communities, the workplace, recreational venues, and clinical settings, disability etiquette should be utilized—a set of guidelines on how to interact with patients with IDD. These include speaking to the patient directly, using clear language in an adult voice, and avoiding stereotypes about people with disabilities.9 The entire health care team, including all front-facing staff (receptionists and care and financial coordinators) and clinical staff (physicians, nurses, medical assistants), need to be educated in, and practice, disability etiquette.
Preparing for in-person visits. Pre-visit preparation, ideally by means of dialogue between health care staff and the patient or caregiver (or both), typically by telephone and in advance of the scheduled visit, is often critical for a successful first face-to-face encounter. (See “Pre-visit telephone questionnaire and script for a new adult patient with IDD,” page 287, which we developed for use in our office practice.) Outcomes of the pre-visit preparation should include identifying:
- words or actions that can trigger anxiety or panic
- de-escalation techniques, such as specific calming words and actions
- strategies for optimal communication, physical access, and physical examination.
SIDEBAR
Pre-visit telephone questionnaire and script for a new adult patient with IDD
Introduction
Hello! My name is ______________. I’m a nurse [or medical assistant] from [name of practice]. I understand that [name of patient] is coming to our office for an appointment on [date and time]. I am calling to prepare our health care team to make this first appointment successful for [name of patient] and you.
- How would [name of patient] prefer to be called?
- Who will be accompanying [name of patient] to the appointment? What parts of the appointment will that person remain for?
Describe what to expect, what the patient or caregiver should bring to the appointment, and how long the appointment will last.
- What makes [name of patient] anxious or fearful so that we might avoid doing that? Should we avoid bringing up certain topics? Should we avoid performing any procedures that are customary during a first appointment?
- Does [name of patient] have sensitivities—to light, sound, touch, etc—that we should be aware of?
Offer to have a room ready upon the patient’s arrival if remaining in the waiting area would cause too much anxiety.
- What helps calm [name of patient]? Are there some topics that put [name of patient] at ease?
- How does [name of patient] best communicate?
- Is there anything else the health care team might do to prepare for the appointment?
- Does [name of patient] need personal protective equipment, a wheelchair, oxygen, or other medical equipment upon arrival?
- What would make for a successful first appointment?
- What strategies or techniques have [name of patient’s] providers used in the past that have helped make health care visits successful?
- Is there anything else you want me to know that we haven’t talked about?
- Would it be helpful if I talked with [name of patient] now about their upcoming appointment?
Initial appointments should focus on building trust and rapport with the health care team and desensitizing the patient to the clinical environment.10 Examination techniques used with pediatric patients can be applied to this population: for example, demonstrating an examination maneuver first on the parent or caregiver; beginning the examination with the least invasive or anxiety-provoking components; and stating what you plan to do next—before you do it.
Continue to: Systematic health checks provide great value