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.

Kinwell Medical Group’s new clinics exclusively serve Premera members; part of the health plan’s long-term strategy to address the primary care crisis

Mountlake Terrace, Wash., Jan. 18, 2022 (GLOBE NEWSWIRE) — Premera Blue Cross and Kinwell Medical Group today announced a collaboration to improve access to primary care in Washington. Kinwell Medical Group is opening primary care clinics across the state, which will exclusively serve people who have Premera Blue Cross, Premera Blue Cross Medicare, or LifeWise Health Plan of Washington plans as their primary insurance, as well as BlueCard holders.

This partnership is a key part of Premera’s strategy to address the growing crisis in primary care. By 2034, the United States is expected to face a shortage of up to 124,000 doctors, 48,000 of whom will be in primary care alone, according to a 2021 study by the Association of American Medical Colleges (AAMC).

While the study focuses primarily on future doctor shortages, Americans are now feeling the shortfall. According to a study conducted for the AAMC, 35% of people surveyed said they had trouble finding a doctor in the past two or three years. That’s 10 points higher than when the question was asked in 2015.

“If we are to live up to our mission to make health care work better, we simply cannot afford to sit idly by and let this crisis develop,” said Lee McGrath, vice-president. Executive Chairman of Healthcare Services for Premera. “That’s why Premera is working today to improve our members’ care experience and invest in educational programs focused on pipeline growth for future primary care providers.”

Kinwell Medical Group’s first two primary care clinics opened in December 2021 in Yakima and Wenatchee. Designed as integrated care centers, Kinwell Medical Group clinics provide on-site access to a variety of services. This will greatly improve customer service and reduce wait times for Premera members. Additional clinics will open across Washington this year.

“At Kinwell, we believe that alongside medical expertise, developing a true connection always makes a difference, and we are thrilled to provide this level of care to the Yakima and Wenatchee communities,” said Dr. Mia Wise. , president of Kinwell Medical. Group. “We want to provide personalized and sincere care by removing barriers for patients seeking to improve their health and create a real relationship with their healthcare team. We look forward to expanding our offering to communities across Washington State in the years to come. »

The collaboration with Kinwell Medical Group expands the concept first undertaken in Spokane. In 2019, Premera partnered with Vera Whole Health to open Vivacity Care Centers, which are primary care centers exclusive to its members. Today, there are four Vivacity Care Centers in Spokane County that provide Premera members with better access to primary care, an improved approach to their healthcare, and a better customer experience.

Investing in the Primary Care Pipeline

Although Premera is focused on the immediate need for access to affordable, quality care for its members, increasing the capacity of rural family medicine residencies remains important in long-term efforts to improve health care. for more than one million people living in rural Washington.

A 2017 study by the National Rural Health Association found that people living in rural areas have less access to primary and preventive care and are more likely to suffer from chronic disease, disability and premature death.

“If we don’t address the potential shortage of primary care providers now, rural communities will suffer the worst in the future,” McGrath said. “This will compound an already growing health equity problem. We need to invest in and develop educational programs that focus on both primary care and rural health care.

Since 2018, Premera has committed more than $58 million to improve access to care in rural areas. The company concentrates its investments in the following areas: recruitment and training of doctors, nurses and caregivers; clinical integration of behavioral health; programs to increase the capacity of mental health crisis centers in rural areas; and grants for small equipment to rural providers.

This included a recent $5.5 million grant to support Pacific Northwest University of Health Sciences (PNWU) rural family medicine educational pathway and training, which was developed in collaboration with MultiCare Health System, a leading organization non-profit health care. Premera also provided a $4.7 million grant to the University of Washington to establish the Rural Nursing Health Initiative to place current students in rural practices in Washington State.

Learn more about Premera investing in rural communities.

About Premera Blue Cross
Premera Blue Cross is a leading health plan in the Pacific Northwest, providing comprehensive health benefits and tailored services to more than 2.5 million people, from individuals to Fortune 100 companies. For more d information, visit www.premera.com.

About Kinwell Medical Group
Launched in 2021, Kinwell Medical Group is an exclusive physician-owned network provider serving people who have Premera Blue Cross, Premera Blue Cross Medicare, or LifeWise Health Plan of Washington as their primary insurance, as well as BlueCard holders. Kinwell is changing the conversation about healthcare to include wellness and prevention. At Kinwell Clinics, care is provided by Kinwell Medical Group clinicians. They are supported by an independent company, Kinwell Physician Network, which provides administrative and commercial services allowing Kinwell Medical Group to focus on what it does best: caring for patients. For more information, visit www.kinwellhealth.com.

The International Day of Persons with Disabilities celebrated on December 3 each year aims to raise awareness about disability issues and mobilize support for the dignity and well-being of people with disabilities. Many people see disability as divine punishment for the sins of the previous birth and offer sympathy to the disabled. However, such an attitude causes immense pain to mothers of children with this condition. These mothers devote all of their time to caring for their “special children” and have moving experiences. Among them is Sabitta George, famous actress, model and singer, well known for her role of “Lalithamma” in the television series “Chakkapazham”.

Sabitta left a thriving profession abroad and returned to her home state of Kerala on a mission. It was not to become famous as a celebrity but to change people’s attitudes towards disability. She also urges healthcare professionals to adopt a caring attitude towards people with disabilities.

Sabitta talks about her own experiences. For 12 years, she cared for her son, who was born disabled due to medical negligence in the United States. The celebrity shares her story with Onmanorama.

Costly medical error

“My first delivery was to the United States. The day before the scheduled date, I realized that the amniotic fluid was leaking and we immediately went to the hospital. On admission, staff tried to induce pain. Considering my state of health at the time and the weight of the fetus, there was little chance for a normal delivery. However, in many foreign countries such as the United States, all options for a normal childbirth would be explored during the first pregnancy. Cesarean section is the last resort, ”recalls Sabitta.

Even though the epidural injection was given, there was no sign of labor for 16 hours. But Sabitta felt that the fetus was becoming less active and that there were variations in its heart rate. She also saw the variation on the monitor and asked for the doctor’s attention. However, the midwife on duty ignored Sabitta’s request and inserted the fetal scalp electrode. In the process, the midwife made a mistake and cut the umbilical cord.

Sabitta began to bleed and the child’s life was in danger. Sabitta and her mother, herself a nurse, begged the midwife to call the doctor. However, again, the midwife did not listen to them and tried to hide her mistake.

“My baby struggled for almost three hours with the umbilical lifeline cut. Finally, our persistent requests brought in the doctor and the Cesarean was performed, ”explains Sabitta.

The newborn was almost dead and was placed on a ventilator. “The doctors only gave him three days of life because the internal organs were badly damaged. The functioning of the kidneys and heart has been affected. There was also clotting in the brain cells. The struggle during childbirth made my son a person with cerebral palsy, ”says Sabitta.

The baby lacked sight, speech and mobility.

From three days to 12 years old

After giving birth, Sabitta spent several days outside the ICU. “I had taken all the precautions during pregnancy, such as having nutritious food with all the vitamins to deliver a healthy baby. My son was indeed in good health until a few hours before his birth. But, after giving birth, he fought for life in intensive care, ”explains the mother.

As the doctors had predicted only three days of life for the infant, they suggested that Sabitta remove him from the ventilator afterwards. However, she refused. “We decided to keep him on a ventilator for a week. On the sixth day, two drops of urine containing blood were detected and the baby was taken to the NICU. Finally, after spending four months there, the baby came back to life. The baby named Maxwell – Max for short – then lived for 12 years with Sabitta.

Sabitta’s appeal to mothers and health professionals

Many people trivialize work by citing cases of delivery on the side of the road and in homes. However, this is a very critical process, says Sabitta.

“I tell surrogates to respond whenever they feel the baby in their womb is not doing well. What mothers feel is more often than not true. Others may not take them seriously, but mothers should strongly demand that the child’s condition be examined by health professionals, ”she said.

Sabitta also wants healthcare professionals to change their attitude. “Medicine requires the extreme involvement of those who work in the field. People in the industry need to show compassion and empathy, ”says Sabitta.

Support system in the United States

Sabitta was fortunate to have a good support system for people with disabilities in the United States. “Disability is not seen as a punishment for past life sins in the United States. People also don’t watch disabled children and mothers there, ”she said.

“Max had a pleasant face. I believe it was a gift from God. His birth was the happiest and saddest event of my life, ”says the mother.

“These children teach us a lot. I learned of Max’s patience and compassion. It took an hour to give her 10 drops of liquid food. Any rush could cause him to choke on the food. When he was two years old, a tube was inserted to feed Max. He was fed by the tube until his death, ”recalls Sabitta.

Only liquid food could be given to Max. Because his kidneys were damaged, Max took only skim milk, watermelon juice and grape juice.

Five years after Max was born, he had a sister, Sasha. To avoid Max’s fate, she was delivered by Caesarean section at eight months. “Sasha loved Max. I could devote all my time to Max because Sasha also sacrificed a lot. When I spent all the time with Max in the hospital and at home during his last days on a ventilator, Sasha m “Said not to worry about her and take care of her brother. Her words gave me a lot of courage and support,” says Sabitta.

An angel named Chella

To take care of Max, Sabitta was helped by Chella, a Mexican woman. “She had a very long name but we called her Chella. She didn’t speak English and I didn’t know Spanish. We still took good care of Max. I learned from Chella that language or nationality was not a barrier to helping others during a crisis, ”said the celebrity.

“When God challenges us a great deal, an angel is also sent for our help. I realized this truth thanks to Chella, ”reveals Sabitta.

Normal schooling

Children with disabilities should not be confined to their homes, says Sabitta. “Max studied at a normal school in the United States because the facilities there are extremely suitable for people with disabilities. In addition to a specialized classroom, school buses have ramps, ”she emphasizes.

At school, Max was fed by an assistant named Miss Hedda. “She was a good companion for Max. The curriculum in the United States also emphasizes caring for people with disabilities. The company is also very considerate without being sympathetic. It’s an atmosphere suitable for people with disabilities, ”explains Sabitta.

Max Home Foundation

“Training to integrate children with disabilities into the mainstream should start at an early age. Changes are needed in the education system for this. Other children should be familiar with the needs of their disabled peers. Max was taken to schools where I worked as a volunteer and the students read him stories. Although he couldn’t hear or see them, Max made it possible for other children to understand and accept people with disabilities, ”says Sabitta.

In order to carry out her disability support projects, Sabitta registered a foundation called “Max Home” in the United States. As part of this project, medical supplies are being distributed to disabled people in Kerala. “We never donate money, but our volunteers identify the special need and provide items such as specialized wheelchairs, water beds, breathing apparatus and hearing aids,” she says.

The funds for the foundation are provided by Sabitta from her savings and with the support of friends. “We do not conduct any fundraising campaign. Our activities are shared on a “Max Home” Facebook page, ”she says.