Does developmental and intellectual disability fall into service to underserved communities?

[PickaGodnPray]

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I have talked to a number of individuals on adcom committees about service to underserved communities, but one area that seems to be excluded consistently are individuals with developmental and intellectual disabilities. I am wondering if this is specifically just at the few schools I talked to and is sampling bias, or if this applies to other programs? If they are not typically included under the umbrella of "underserved", can someone comment on the reasons for this?

 

[polymerization]

I would say all of the above are underserved, and especially so, because they inherently need way more of every kind of service/resource imaginable; however, often what the system can provide them falls tragically short even when the system works well and is actively serving patients.

The reality is very few individuals with profound disabilities have families well-resourced enough to be able to secure around-the-clock clinical nursing care, the PT/OT/ST/ABA they need to develop their physical faculties; or a patient, considered education to develop their intellectual and emotional faculties.

If you're working with these folks, good on you. I would have words for anyone who could sit across from me and confidently say the population of Down syndrome patients, for example, are not underserved. My guess is that there was some kind of miscommunication, because to make that statement would be flagrant and just factually untrue.

 

[PickaGodnPray]

If you're working with these folks, good on you. I would have words for anyone who could sit across from me and confidently say the population of Down syndrome patients, for example, are not underserved. My guess is that there was some kind of miscommunication, because to make that statement would be flagrant and just factually untrue.

See, that is my thought, but as someone who has worked with this population for years in research, clinical, and non-clinical capacities I have been told in feedback appointments I need more service to underserved groups and individuals different from myself.
I get there are more conventional ways to add this service like working with unhoused individuals and low SES families, but it still feels discouraging that people with developmental and intellectual disabilities are not always recognized within that same framework. It seems like an oversight given how substantial their barriers to care often are. It also ignores intersectionality of these disabilities which are compounded by SES.

 

[LizzyM]

Frankly, I think that some adcoms are into box checking and if they are looking at "volunteer, non-clinical" they want to see services to the unhoused, food for the food insecure, etc.

Keep in mind that teaching, research, clinical volunteering, or paid employment with these populations will not count as "non-clinical volunteering".

I also must say I got a bit of a chuckle at the comment that you were not volunteering with a group different than yourself.

 

[polymerization]

See, that is my thought, but as someone who has worked with this population for years in research, clinical, and non-clinical capacities I have been told in feedback appointments I need more service to underserved groups and individuals different from myself.
I get there are more conventional ways to add this service like working with unhoused individuals and low SES families, but it still feels discouraging that people with developmental and intellectual disabilities are not always recognized within that same framework. It seems like an oversight given how substantial their barriers to care often are. It also ignores intersectionality of these disabilities which are compounded by SES.

This is going to start off weird but indulge me for a sec.

I am fundamentally materialist, philosophically. To me, it really does all come down to money. We live in a capitalist society with a privatized healthcare system.

I bring that up because the kinds of families who accept volunteer care are people who would not otherwise be able to secure care by any other means in the open market. Additionally, the patient themselves, being profoundly incapacitated, is not gainfully employed, and cannot participate in the market at all—they are wholly dependent on the social safety net. That means, by definition, both the patient and their families are underprivileged vis à vis SES. It is possible some of those families might even be homeless and you wouldn't even know it.

In my eyes, you are working with low SES families. It just depends how you want to set the interpretive frame within your application (obviously to a reasonable degree, I'm not encouraging dishonesty).

When you talk about your activity, emphasize what you learn about these families in the little moments where you could see clearly how precarious their situation really was, above and beyond their child's diagnosis (although, of course, it's appropriate in my opinion to discuss how chronic illness with these particular manifestations could absolutely worsen anyone's financial posture, if there was one to begin with).

Unless it was a very well-defined, procedural role (like, I don't know, a clinical lab scientist or something where it would be really weird to talk about anything other than the tasks associated with that job), you have total control over what you carry away from that experience and what you choose to discuss.

I hope this makes sense. It's abstract because it really is a wink-wink-nudge-nudge. I am fairly positive you would have been better received if you had maybe not led with their diagnosis.

 

[Mr.Smile12]

I have talked to a number of individuals on adcom committees about service to underserved communities, but one area that seems to be excluded consistently are individuals with developmental and intellectual disabilities. I am wondering if this is specifically just at the few schools I talked to and is sampling bias, or if this applies to other programs? If they are not typically included under the umbrella of "underserved", can someone comment on the reasons for this?

Of course, they're included for most people who look at social medicine issues. (We cover this in Becoming a Student Doctor.)

I agree with @LizzyM that applicants need to show their service is more than just checking the box (working with those different from myself or underserved communities).

My conjecture of why it's not considered: partly lack of research because developmental/intellectual disabilities are extremely broad and diverse. Any approach is probably going to be at an individual case basis, not something that is immediately connected with broader societal/social determinants, even if it might be tangentially related.

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I also just reorganized a section in Becoming a Student Doctor on caregiving. I'm pretty sure we can agree we do a poor job supporting caregivers or anyone with chronic illnesses or disabilities.

 

[PickaGodnPray]

I bring that up because the kinds of families who accept volunteer care are people who would not otherwise be able to secure care by any other means in the open market. Additionally, the patient themselves, being profoundly incapacitated, is not gainfully employed, and cannot participate in the market at all—they are wholly dependent on the social safety net. That means, by definition, both the patient and their families are underprivileged vis à vis SES. It is possible some of those families might even be homeless and you wouldn't even know it.

In my eyes, you are working with low SES families. It just depends how you want to set the interpretive frame within your application (obviously to a reasonable degree, I'm not encouraging dishonesty).

No, you are absolutely correct, as many of the patients I saw in clinic with these disabilities were on Medicaid. To take it a step further, there are few specialists in my state for intellectual/developmental disabilities (IDDs), making it even harder to access the resources these families need to help their child thrive (let alone get the time off of work).

I hope this makes sense. It's abstract because it really is a wink-wink-nudge-nudge. I am fairly positive you would have been better received if you had maybe not led with their diagnosis.

I think this is the problem that I have with the system and why I asked the question in the first place. The question is not if these children are underserved, they very much are, but why they are not counted as medically underserved populations. It goes deeper than AMCAS, but as someone who is only an applicant, I am limited in the amount of impact I can have in advocating for these individuals. I can volunteer and help advance research as much as I want, but to make actual impacts on patients by providing healthcare outreach, introducing policy changes, and ensuring that disability is recognized as a fundamental component of health equity, I need to be part of the system that shapes those decisions.

I think you are right that if I led with talking about the buzz words adcoms love I would jump through the hoops required to obtain a favorable outcome, but I also don't think I should have to twist my application in ways that makes these children's stories invisible. Isn't that the entire goal of medical schools now? To ensure all communities are represented and have the support that they need?

 

[LizzyM]

I'm surprised that @PickaGodnPray is focusing on children but perhaps that is the sub-population they're working with. I was thinking more broadly about children and adults with developmental disabilities, many of whom are institutionalized when they reach adulthood. I can't imagine that volunteering with institutionalized adults would be seen as other than non-clinical volunteering.

With kids, it could be a gray area if you are coaching a sport, tutoring after school, or being a buddy to a middle class kid with a disability. I think that many middle class families that could afford to pay for services, will happily accept volunteers interacting with their children in roles as t-ball coaches, scout leaders, or after school tutors, etc.

 

[PickaGodnPray]

I focused on children more for simplicities sake, my own work has included all age groups in numerous settings. Part of that has come from those institutionalized as parents pass or are unable to care for them due to extenuating circumstances. Others are clinical by playing/supporting children in hospital settings.

Overall, I think a major step in the right direction would be to formally designate individuals with developmental and intellectual disabilities as a medically underserved population, allowing them access to the funding and resources that accompany that status. For example, Down syndrome is underfunded in terms of research despite being the most common form of intellectual disability and numerous individuals from this population are excluded from clinical trials and (at one point) even treatments.

My long term goal is to help in obtaining these resources for patients and families while pushing into the direction of understanding biological barriers to independence due to intellectual disability. Through this type of empowerment, we could help navigate both systemic and biological limitations these patients and families face in advocating for their independence. Perhaps then we wouldn’t have to institutionalize just because of neurodivergence.

 

[Med Ed]

I have talked to a number of individuals on adcom committees about service to underserved communities, but one area that seems to be excluded consistently are individuals with developmental and intellectual disabilities. I am wondering if this is specifically just at the few schools I talked to and is sampling bias, or if this applies to other programs? If they are not typically included under the umbrella of "underserved", can someone comment on the reasons for this?

The issue is the language, which is subtle but important. Medical discussions that involve the word "community" typically mean a group of people living in a certain locality. The people living in an underserved area are by definition underserved.

In contrast, people with developmental and intellectual disabilities would be more commonly described as being a population. Individuals within that population may or may not be underserved.

Addressing healthcare needs in specific locality will have challenges that are distinct from providing them to a specific patient population, and vice versa.

All that said, I do understand that the word "community" has multiple definitions, I'm just telling you how I think the stereotypical adcom will apply the term.