This is absolutely true in particular for adults with IDD as compared to young children. The lack of adequate healthcare to this all too often devalued and marginalized population is not new, nor has it been debated or discussed and written about over many decades. What was really lacking was the will and the desire to make a difference that would change the status quo. A broader and more collective effort needed to be done.
Finally, in 2001, Surgeon General David Satcher brought a good number of dedicated people together to shine a light on the issues and concerns of health disparities for those with IDD. Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation was published in 2002. No one had any doubt that people with IDD have unique and often complex healthcare needs that were not being addressed and that these issues and challenges greatly impacted one’s quality of life, as well as that of families and caregivers supporting them.
The blueprint was only offered as a guide and it was left to those who were leaders, and dedicated to make a difference to fill in the gaps in helping to provide the much-needed awareness, education, training, and curriculum on IDD health. The turnaround in helping to close the gap began right away during the time of the initial Surgeon General’s conference. A number of medical care providers and oral health providers who had a great interest and had experience in IDD health got together and decided to make a difference by deciding that a national IDD healthcare organization needed to be formed in order to provide the structure and guidance to help lead the way in ultimately being able to reduce IDD health disparities. The American Academy of Developmental Medicine and Dentistry (AADMD) was born a year later. Much was needed to be done to reduce the many disparities in IDD health and decisions were made by the AADMD to embark on a number of directions to help offset the inequities of care.
Healthcare providers lacked the training, they lacked the personal experience in understanding the values and issues and concerns of those with IDD and their supports, they lacked a fair and adequate reimbursement for the complex and timely assessments, and care practices that are often needed to provide appropriate care.
As a neurologist practicing in southern New Jersey, I have had an interest in disability health as well as in geriatric care for the general population who had neurologic complications. I learned of the AADMD shortly after it was formed, and I quickly joined to add my voice and energy to the cause.
Our organization recognized that to make a stab at getting healthcare providers to engage and be supported in caring for those with IDD, it needed a national direction. It was known that there was federal mandate for selected populations who were designated as being a “Medically Underserved Population” or MUP. Health Resources and Services Administration (HRSA) is within the US Department of Health and Human Services Administration and they have created the MUP and its specific guidelines. People with IDD have not been designated officially as being MUP despite the data to the contrary. Much effort by the AADMD has gone into pushing for this designation to be applied to those with IDD because it would enable healthcare providers to be provided with loan forgiveness, research into IDD health, and more. Current groups of people that have been designated as being medically underserved include homeless, low-income, Medicaid-eligible, Native American and migrant farmworkers. Currently there is a bill sitting in Congress that may make this action possible.
Additionally, the AADMD has aggressively engaged in IDD healthcare curriculum development thru medical schools, nationally as well as through its various partnerships with a number of IDD advocacy groups in supporting IDD health such as Special Olympics, National Alliance of Direct Support Professionals (NADSP) , Developmental Disability Nurses Association (DDNA), and many more.
The work in trying to bring IDD health education and knowledge to the great number of US healthcare organizations is daunting. An exception is with US dental care IDD education. The national dental school deans have all agreed about the need to have IDD oral health training and education be a part of all dental students in their training which is a mandate. But this is not true at all for all of the medical primary healthcare and specialty healthcare professional organizations. There is currently no IDD healthcare training on adult oriented issues at all across the country within any university, academic center, or medical school that provides any real depth to it that would make a clear dent in improving care.
As a neurologist, I belong to and work with several neurology focused professional organizations. The largest organization that all neurologists are members of is the American Academy of Neurology (AAN). It was founded in 1948 and has 36,000 members. It has annual meetings, has a strong neurology advocacy voice, it helps to create neurology curriculum, and guidelines of care for all neurologic complications. The AAN is recognized across the world as being the go-to neurology professional organization and has a large number of international members. What it has not had, until recently, is any dedicated focus on the specific neurologic issues and concerns that face those adults with IDD. Epilepsy, movement disorders/spasticity, aging and dementia, as well as behavioral challenges and autism, are all frequent complex health issues frequently encountered by many with IDD.
The AAN, like many other healthcare organizations, has subsets within it that focus on particular diseases and many practitioners may specializes or have a special interest and knowledge within that area. The AAN has “Sections” which are a group of these specialty areas for which all AAN members can join and learn, network, be a part of advancing education and training relevant to that area of focus as well as to help plan for annual meeting events. The AAN has over 30 Sections that include Child Neurology, Behavioral Neurology, Geriatric Neurology, Genetics, Women’s Health, Multiple Sclerosis, Resident/Medical School Education, Ethics, and many others. None of these Sections specifically focuses or discusses adult with IDD issues but some may touch upon it a little but not in depth or with any consistency. Without this focus, the AAN has not had on its plate IDD in general, aside from what might be covered in pediatric neurology for those that have a IDD. The transitioning of care from pediatrics into adult care and focus on older adult neurologic issues has been threadbare in the AAN.
I decided to make a difference by going inside the AAN and creating a formal group that would be able to have a voice and would reflect the specific needs that so far have been absent. In 2014, with the advice and guidance of the AAN administration, I was recommended to apply for a Adult with IDD Special Interest Group (SIG) status. We had to get a petition signed by 50 other neurologists, write up a mission and, once we were able to accomplish that task, it was reviewed and approved a short time later. The SIG then enabled me to hold a specific course on “The Neurologic Complications in Adults with IDD” at the AAN’s annual meeting. It went well, but not much else was able to be done with this SIG in hand. I honestly felt frustrated, especially the following year when the AAN denied my request to hold another course on IDD at the annual meeting. I had to go back to the drawing board and come up with Plan “B”.
It appeared that one of the main problems was that a SIG held very little power like a Section, so we were recommended to switch our SIG status to become a new Section. This required a number of administrative steps, meetings, and finally a vote by a committee within the AAN to determine whether our Adult with IDD “deserved” to be a new Section. Drum roll please…
Yeah!!! We were accepted, and with this new title we were able to sit on equal terms with all of the other large and well-established and influential Sections.
The acceptance came May 2019 and, as it turned out, other Sections were thrilled we came into existence, especially the Child Neurology Section. The pediatric neurologists have been very frustrated that they could never find a “good” adult neurologist to take good care of their IDD patients. and that our new Section would ultimately help with that. The next step with our Section was what to do with this power and possible influence.
I am the official chair and leader of this group and began to find other like-neurologists who cared about the IDD population, with the realization that we needed a number of people with interests and experience in a number of IDD neurologic subspecialities, such as epilepsy, genetics, aging/dementia, resident training, as well in cerebral palsy and spasticity. These wonderful colleagues are from across the US and Canada. We meet monthly via Zoom calls with a specific agenda of making a change and difference in how Adult IDD neurologic education, training and care will be provided. We have also partnered with the Child Neurology Foundation (CNF) in working on a transitioning plan as well as a number of educational efforts.
We had put into place a terrific program for our 2020 Annual meeting in Toronto. It included a course on Epilepsy, a Section meeting with other colleagues, a Leadership meeting with other Sections, as well as a meeting that we set up separately to work with care providers and physicians in Ontario on a day-long conference to discuss and review the issues relevant to our Section, with participation by a number of my IDD Neurology leaders. We also had set up plans to be active in a AAN Brain Health Fair in Toronto that would also help engage the community. Then COVID-19 hit and it was all cancelled.
We have now regrouped, held a Zoom Section meeting to review our progress to date, with plans for the 2021 meeting in San Francisco. We have created a subgroup of neurologists specializing in IDD epilepsy and have successfully arranged a conference this fall at the American Epilepsy Society (AES) to hold a course on IDD epilepsy, and in addition we have met with leaders in Europe and elsewhere in the US to work on creating guidelines on IDD Epilepsy.
It makes a bigger impact if you have influence within a national specialty healthcare organization that is willing and open to the issues and concerns of those populations that have faced adversity, are vulnerable, and have health disparities. The AAN will be a better organization by looking at themselves in the mirror and want to be better. I am sure other organizations like the AAN would do the same. There just needs to a leader or group of leaders who are persistent with a compelling message and story to tell that includes having advocates alongside of them, telling their real-life stories and challenges that they have faced along the way. We are in a better position now than we were in 2002 when the AADMD was formed, but so much more still needs to be done.
ABOUT THE AUTHOR:
Seth M. Keller, MD is a board-certified neurologist in private practice with Neurology Associates of South Jersey. He specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (IDD) with neurologic complications. He cares for individuals with IDD both in the community, as well in New Jersey’s ICF/DD centers. Dr Keller is on the Executive Board of the Arc of Burlington County as well as on the board for The Arc of New Jersey Mainstreaming Medical Care Board.
Read the article here.