Improving care for adults with intellectual and developmental disabilities

In 2021, the American Academy of Neurology (AAN) announced the formation of a new group within the organization: the Adults with Intellectual and Developmental Disabilities (IDD) Section of the AAN. With the goal of providing resources and training to improve the care of children and adolescents with intellectual and developmental disabilities, the section is led by Seth M. Keller, MD.

Infants, children, and adolescents with DID often face comorbid conditions such as epilepsy, cerebral palsy, and autism, and are most often cared for by pediatric neurologists. Although, when these young people become adults and transition into adult neurology care, they often face challenges, as these neurologists have historically been ill-equipped and under-educated on how to care for them appropriately.

At the 2022 AAN Annual Meeting, April 2-7, in Seattle, Washington, NeurologyLive^® sat down with Keller, a board-certified neurologist in private practice with Advocare Neurology of South Jersey, to discuss the needs of these patients and the goals of the section, whose leadership also includes Vice President Bhooma Aravamuthan, MD, DPhil.

NeurologyLive^®: Could you provide information on the section for adults with intellectual and developmental disabilities at the AAN?

Seth M. Keller, MD: The section itself represents the population of adult patients with intellectual and developmental disabilities. For example, these would be people with autism, cerebral palsy and Down syndrome, who have suffered from a range of neurodevelopmental disorders since birth. Our section focuses on the issues that concern them as they move from the pediatric world to the adult world. Their types of complications, which are quite complex in this patient population, include epilepsy and various seizure disorders, but also movement disorders and spasticity. I focus not only on epilepsy myself, but on the aging population, those with the same type of condition, developmental disabilities, who are older adults. For example, one thing that is very, very prevalent in the developing population, particularly in people with Down syndrome, is early onset Alzheimer’s disease. For people with Down syndrome, it’s a really trying and difficult situation — 60% get Alzheimer’s disease before the age of 60. It is a real challenge and a tragedy when these difficulties arise in this population.

From your perspective in the field, as it relates to neurologists and clinicians, do you think the voice of the patient still needs more presence in the room?

Let me put it like this. When children have developmental disabilities, they are brought in with their advocate parents, who have a very strong and loud voice for their children. And so, in pediatrics and pediatric neurology, in particular, there’s often a lot of attention for developmental disabilities because the parents are front and center and because pediatrics has education and training, they have centers, you can get board certified in pediatrics for developmental disabilities. The challenge is that when they grow up, when they get to 18, they see adult providers—adult neurologists—and that’s basically where things hit the wall . This is because adult neurologists, essentially, receive no education or training in medical school, they receive no residency or fellowship training, in dealing with the neurological complications of adults with IDD. A lot of it really starts in the transition process, trying to find a supposedly good or competent adult neurologist who understands people with Down syndrome, understands people with cerebral palsy, who understands people with autism who develop neurological complications and trying to find an adult provider. It was very difficult. There have been articles written about this not only by the AAN, but also by other organizations like the Child Neurology Foundation, which are trying to help understand. The problem is that there is a lack of education and training for adult neurologists.

How is this transition process different for this patient population? Are there ongoing efforts to address these specific challenges?

There is not enough. I would like to admit that a lot is being done, but at this moment the creation of a section has arisen in this situation to be able to address these questions. One would be the complexity of seizures, and there would be a number of people who have syndromes. You and I were talking earlier about the different: Dravet syndrome, Lennox-Gastaut syndrome, tuberous sclerosis complex—to name a few—these different syndromes are essentially genetic. These genetic syndromes are not really appreciated or well known by adult neurologists.

The other complexity is that adult neurologists may not really value them as people of value or in need of equity in care. And that’s the other part about it. They may not be able—because they’re not really trained to see an adult with a developmental disability—to provide care. To treat someone—it’s a bit of a philosophical comment—and to treat a patient, you can of course know about a drug, you can know about a disease, you can order a test, but to really provide care to them, you have to be able, on some level, to connect with them as a person of value. And I’m not trying to throw anyone under the bus about this, but you really need to connect with them. There can be a disconnect between a neurologist or any other health care provider – not just neurology, really any health care provider – about connecting to someone who is not a small child, is not with his parent, someone you may not have the “warm and fuzzy” as much as possible with a child.

There are also many common behavioral issues. People may suffer from autism, seizures, or other types of common behavioral problems. The physician and neurologist may not have this level of comfort and be able to manage or cope with many behavioral issues concurrent with their neurological complication. The other aspect is that the caregivers sometimes may not be the mother and the father. There is a decent percentage of adults with developmental disabilities who may not be living with their mom and dad anymore. But if they are, they may be elderly parents or live in a group home, and the health care provider or neurologist may not be able to appreciate who the support provider who accompanies them. A direct support professional, who is this person? What are they doing? What is their decision regarding their ability to have a voice or a proxy for them or not?

Then try to get feedback and try to get information from patients, to whom you are not able to provide much information because they may be verbal or non-verbal badly. There are a number of complications that can make the neurologist uncomfortable, especially when he receives no education and training, and almost tries to deal with them as he would with someone else. one who does not have an intellectual disability when there are lots of difficulties or challenges that are different from normal and typical populations.

How are we going to settle this?

Education is part of it. There is a very important and valued nature for equity of care for diverse populations at AAN, and there is no other patient population that truly has so many equity and access challenges. quality services than adults with IDD. Right now we’re working very closely, which is a wonderful thing, with the AAN to sort out exactly that. In our chapter and with the leaders of our chapter, which is growing across the country and internationally, we try to be there as a voice. That’s why we are a chapter, we try to be there as a voice for adults with IDD, so we can make sure they have that voice talking about what it means to get an education and what it means to get trained. But how do we get it? In addition to our annual meeting, how can we get printed materials that neurologists, through their training, can learn from? Additionally, we truly, deeply appreciate the importance of advocacy, whether it’s a parent organization or an organization that supports various syndromes, like the Dravet Syndrome Foundation, the Lennox-Gastaut Foundation, or ‘others. We really appreciate that these foundations, these organizations are extremely important. I would say we really wouldn’t do much without helping with education and training without working with them in partnership on how we move forward. They live in there. They wake up, go to sleep every night and take care of these people while we go to see our next patient. So really, for us, we really have to make sure that everything we do is a discussion, talk to these various organizations and work with them at all levels.

Transcript edited for clarity. Click here for more AAN 2022 coverage.