Provider Training Needs for the Care of Patients with Intellectual and Developmental Disabilities (IDD)

By Siasoco, Vincent | The Exceptional Parent, August 2014 | Go to article overview

Provider Training Needs for the Care of Patients with Intellectual and Developmental Disabilities (IDD)


Siasoco, Vincent, The Exceptional Parent


For those without disabilities, a visit to a primary care provider may seem like a simple activity. Walk into the exam room, step on a scale to have one's weight checked, and get onto the exam table without any problem. One would be able to clearly express why they were there to see the doctor for a visit. Once the physical exam and other tests were completed, the doctor would discuss what their assessment and plan was, maybe prescribe or readjust some medications. Afterwards a follow up visit would be scheduled for some time in the near future. For the primary care provider, this type of patient experience and examination is the norm. Unfortunately, this type of visit for a patient with intellectual and developmental disabilities may not be that simple.

For those patients with intellectual and developmental disabilities, there continue to be barriers to quality health care in many different forms, such as architectural and physical. Buildings may not have accessible ramps for wheelchairs. Exam rooms may not have height adjustable exam tables or wheelchair scales. The National Study of Women with Physical Disabilities compared health disparities between women with disabilities and those without. The study revealed that the most common reason why women did not have pelvic exams based on national preventative health guidelines was that they just had difficulties getting onto the exam table. (1)

Providers may have difficulty in overcoming cultural and stereotypical barriers. Not enough time may be allotted during a visit to communicate properly and understand the environment a patient may live in, leading to poor coordinated care.

A case in point, a few years ago John was diagnosed with glaucoma during a routine eye exam and was referred to an eye specialist. John has cerebral palsy with a combination of spastic hemiplegia (spasticity affecting one side of his body) and spastic diplegia (spasticity affecting his lower extremities) allowing only one of his arms to move no higher than his chin. John was very independent and lived alone with the help of four different home attendants that assisted him during the day time hours of the week. Van transportation was set up and pertinent medical records were sent to the ophthalmologist in advance of his visit for her review to help prepare for the visit. That afternoon the clinic nurse at his primary care doctor's office called to check up on him and ensure everything went smoothly. John was very impressed with how nice the doctor was, explaining his condition and getting him in and out of the visit in time to be picked up by his van. He had just returned from the pharmacy after picking up his eye drop medications when he received the call, and during their conversation he told her he forgot to ask one question..."How am I supposed to put these eye drops in my eyes at night after the home attendants have gone home for the day?"

Lack of Training

One of the most significant barriers to care is the lack of training for healthcare professionals on how to care for patients with disabilities. It has been noted that most people with disabilities receive care from providers that have not had any special training or are unaware of the many challenges facing those with disabilities. Recent studies indicate that people with disabilities experience both health disparities and problems in gaining access to healthcare. It also has been reported that, compared with people without disabilities, people with disabilities are more likely to experience difficulties or delays in getting the health care they need with higher rates of obesity and high blood pressure. Most have not had an annual dental visit. Females with disabilities are more likely to not have had routine mammogram and pap smears. The Centers for Disease Control and Prevention reported that more than twice as many adults with disabilities report unmet health care needs compared to those adults without disabilities. …

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