Improving care for patients with intellectual disabilities & developmental disorders

When Michelle Cornacchia, MD, was growing up in New Jersey, she lived near a beloved aunt with an intellectual disability. “I didn’t realize that there was anything different about her until I had a friend over — she cried when she saw my aunt. That really shook me. It broke my heart,” she said.

Afterward, Dr. Cornacchia resolved to prevent such misunderstandings in the future. “I volunteered for things like Special Olympics. I wanted to share my love for individuals who are not like everyone else — not everyone understands or sees how beautiful they are,” she said.

During her residency training, Dr. Cornacchia had the opportunity to work in Baylor College of Medicine’s Transition Medicine Clinic in Houston. The clinic addresses the needs of adults with a chronic childhood disease or disability who will still require treatment but for whom pediatric care is no longer available. Diseases and disabilities may include conditions like autism, cerebral palsy, genetic disorders or spina bifida. What struck her the most about the experience was how poorly prepared she felt to care for this underserved patient population.

“These patients are well above the cutoff for being underserved,” she said. “They need more time and more resources. Doctors need more training to treat them. Because of their challenges as adults, these patients end up hopping from provider to provider — the stories are heartbreaking,” she said.

Fortunately, today Dr. Cornacchia is in a position to change that.

As an internist, she spends part of her time in Geisinger’s Comprehensive Care Clinic, which was founded by Thomas Davis, MD, to care for adolescents and young adults with pediatric-acquired chronic medical conditions. In addition to seeing patients, Dr. Cornacchia also acts as a preceptor for Geisinger Commonwealth School of Medicine third- and fourth-year medical students. Earlier this year, she and a group of Geisinger Commonwealth students received a grant from the National Curriculum Initiative in Developmental Medicine (NCIDM) that will be used specifically to better prepare medical students to treat patients with intellectual disabilities and developmental disorders (see box below).

Geisinger Commonwealth student Doug Wells was a member of the team that prepared the grant application. “The whole idea of the grant is to help medical students get comfortable with patients with intellectual disabilities and developmental disorders (IDD) early in their training,” he said, adding that residency — or even a third-year rotation — is far too late in training to meet such a patient or the first time. “With the help of our community partners, we’ll make sure first- and second-year students meet standardized patients with an IDD and talk about this patient population in their case-based learning. Dr. Cornacchia will also teach clinical skills to third- and fourth-year students at the Comprehensive Care Clinic.”

School of Medicine rising fourth-year student Avisha Shah has learned from Dr. Cornacchia in the clinic. She said her discomfort with people with an IDD took her by surprise the first time she had to examine one of Dr. Cornacchia’s patients. “I found it hard to connect,” she said. “I never learned how to conduct a physical exam on someone in a wheelchair. It’s hard to continue with an exam when a nonverbal patient grows agitated when you are pressing on the abdomen. Dr. Cornacchia helped me so much. She is truly inspiring. She takes her time and asks questions about social and personal issues that might affect how compliant the patient will be with the care plan — will they take their meds, do they have transportation?”

Ms. Shah said she has observed Dr. Cornacchia apply the tenets she teaches her students — lessons Ms. Shah knows will serve her well in residency. Dr. Cornacchia described her approach, saying her first goal is to get to know the patient better. “Before science, medicine is an art,” she said. “You should always talk to the patient, even if they are nonverbal. They can sense and understand that you want to connect. You will learn so much and enjoy treating your patients more when you talk to them. I want to know what the patient likes and doesn’t like, what they look like when they are at baseline, what they look like when they feel good.”

Ms. Shah said she learned this first step from Dr. Cornacchia’s example. “We had a nonverbal patient who would cry every time you touched her. Dr. Cornacchia learned that she liked to knit, so now the patient knits scarves while we examine her. When we see her, Dr. Cornacchia asks about and compliments the scarves. It’s made a huge difference,” she said.

The next step, Dr. Cornacchia said, is to understand that quality of life is important to everyone. “My patients are not trapped in a body. They are beautiful and joyful,” she said. “And it’s our job to help them meet their goals. Students must understand that there are things we can’t change, but that we can help — we can do things to help patients swallow more easily, have therapy on their hands, walk with braces. We can prevent infections in our patients who are dependent on ventilators or feeding tubes. We can address social and mental health issues like depression and PTSD. These patients have such complexity. We can’t fix everything, but we can improve things so that our patients reach their full potential.”

Ms. Shah said her time with Dr. Cornacchia has taught her to make care delivery as personal as possible and to find ways to bond with her patients. “You can only learn to do this through experience,” she said. “I don’t know what my specialty might be in the future. I’m open to everything, but I aspire to be a doctor like Dr. Cornacchia. She is so caring, humble and patient. She taught me to have confidence when I see a patient different from how I am. I’m ready to take on that role as a doctor and I’m glad I didn’t have to wait until residency to learn these lessons.”