Healthcare Challenges with Intellectual and Developmental Disabilities
Recently, I have seen first-hand the challenges faced by providers to get the much needed care for the ladies and gentlemen they support. It can be very frustrating for the providers and the individuals receiving care. Sometimes it takes several visits to healthcare providers and many tests to rule out underlying conditions.
The challenges can include improving the health and function of these adults and reducing barriers to health and community participation.
The challenges that can contribute to barriers with healthcare include:
- Lack of access to primary care providers who are knowledgeable and experienced with the ID/A Population.
- Communication barriers that make interaction among the provider, caregiver, and patient difficult.
- Physical challenges that make it physically difficult to access a health care facility.
- Sensory challenges (lighting, sound, smells) that interfere with a patient’s ability to effectively participate in the visit.
- Families and caregivers unable to manage their own health in addition to the health of an adult with I/DD, including getting the adult to scheduled appointments.
- Shortage of time for providers to accommodate adults with ID/A who may have communication and behavioral difficulties that create challenges to patient assessment and treatment.
Individuals can be faced with unique needs that require special attention. Certain conditions such as dental disease, functional decline, mental illness, bowel obstruction, gastroesophageal reflux disease, Osteoporosis, Osteoarthritis, hearing loss, and vison impairment are some of the medical concerns that are more prevalent among adults with Intellectual and Developmental Disabilities. Screening can play an important role in the identification of these conditions
Other concerns are the numerous medications prescribed by various providers. It’s important to sort out medication use, capacity to follow the medication regime (e.g. lab work, special instructions when taking certain medications), and assistance required to support medication compliance.
Adults with ID/A in their 40s may present with conditions commonly seen in the general population after the age of 70 (e.g., diabetes, hypothyroidism, high blood pressure, chronic respiratory conditions).
With careful planning prior to medical appointments it can ensure good use of scheduled time and no overlooked assessments.
Some Helpful tips:
- Prepare the individual in advance for the doctor’s appointment. Ask if they have any concerns they want to share with the doctor ( e.g. medications, treatment or other health concerns).
- Take a list of symptoms that the person is experiencing. Both subjective (S) and objective (O) (e.g. complaints of headache (S), rubbing his head (O).
- Take all adaptive devices to ensure direct communication with patient is being provided ( e.g. iPad, communication cards, hearing aids).
- Use tenured staff, try to use the same staff for the appointments. (Schedule every appointment on Tuesday if that is when that staff member works.)
- Always know why the person is going to the appointment – is it a follow up or new health condition.
- Provide documentation noting any changes in condition (e.g. seizure activity, bowel management, eating, noted side effects of medications, pain).
- Always provide any weight changes that have occurred.
- Know prior to appointment whether the patient requires sedation to complete any tests, exams, or procedures.
- Provide any recent medication changes that may have been made by other specialists involved in the patient’s care.
- Take copies of any recent tests results from all other healthcare providers.
- Share information about recent hospitalizations, ER visits, and appointments with other specialists (e.g. urologist, neurologist, endocrinologist).
- Provide as much information on family history of medical conditions to help encourage early screening detection tests.
- Ask for brochures or other educational materials that may help educate the person on a new diagnosis or condition that they may be struggling with ( e.g. diabetes, osteoarthritis Congestive heart failure).
- Take a list of questions to ask the doctor. Always encourage the person to ask questions to maximize independence with appointments and to build rapport with doctors.
- Ask healthcare providers to review all current medications to elimate excessive medication use.
If you suspect that something is wrong, continue to advocate for further evaluation to rule out all medical concerns. No one knows the person better than you!
Also, as people age they may require more specialized care. Geriatricians are primary care doctors who are specially trained in the aging process. Geriatric physicians are concerned with health problems that frequently affect older adults, such as pain, falls, memory loss, incontinence, and medication side effects.
Lastly, preparing for doctor visits is an important step toward becoming a partner in health care and a better advocate for the person you support. Also, preparation will help you use your own time and the doctor’s time more efficiently and effectively.
