Ethics in IDD - ideas/suggestions for creating training?

[singasongofjoy]

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Hi all. Helping a colleague brainstorm to create a training specifically geared at ethical considerations, conundrums, best practices in the Autism/IDD world. Really want to include some small group scenarios/activities/discussions. It's intended to cover the lifespan, though my brain is a bit stuck right now in recalling situations outside my most common age range - I can think of scenarios from my own experience around transition age - e.g., when guardianship and various alternatives are and are not formalized, or when one parent/guardian is on board and another is not, and some others, but would love to hear about any unexpected situations you've perhaps come across or heard of, areas you'd think don't get enough discussion or wish there was more available training / discussion on, tips and best practices to help others avoid common pitfalls, or any ideas more broadly for such a training. Feel free to PM if preferred, and thank you for any ideas/suggestions!

 

[borne_before]

I do these evals all the time:

• I never make guardianship recommendations in my reports- that's a legal thing to me. I do document impairment, though.
• I have a tough case right now with a kid with FASD/ADHD and his parents want guardianship.
  • Prior evals, including a neuropsych eval, a couple of years ago diagnosed with ID. (FSIQ = 71), but VCI in the low 80's. The killer thing was adaptives were like (around 80's, with some 70's) - not low enough to warrant an ID dx in my opinion.
  • Kid doesn't want guardianship - but very protective parents doo. Testing at school is even stronger.
  • My testing shows 80 vci, 77 pri, 77 wm, and 86 psi with an FSIQ of 75.
  • My adaptive are a 72 overall with low average social skills, low conceptual skills, and very low practical skills.
  • I think he's got adhd, but he is untreated. He also is a strong athlete and has a GF.
• I've done several ID evals on adults with ID, but they squeaked through the cracks bc of socioeconomic disadvantage. How do you treat these adults? Is consent is actually informed???
• OMG you can talk about the ethics of familial ID! I'm doing an ASD on a kid, where BOTH parents have documented IDs. I have to go very slowly to make sure that consent is actually informed.
• What to do when services depend on ASD (e.g., a kid gets more quality services when they have ASD versus ID) and how that can change the assessment dynamic from "let's find out together" to "I want my kid to have ASD because they really need extra help."
• I work in a healthcare setting where everything is free if you are seen at one of our clinics. In the greater community, there are like 6 month wait lists for evals and no one takes insurance. What about multiple relationships? Some of my colleagues wont assess a medical assistants (who make like 13 dollars and hour) for an ASD eval for fear of that. What would you do? Early intervention and access to healthcare is important for outcomes... (I'd see the kid as long as I do not work super closely with MA, be careful about privacy at the company picnic/etc, because morally, I feel compelled to help get the kid identified as early as possible in a manner that lessons the financial impact in the most equitable manner).

I think that a lot of people probably don't diagnose ID when they should because it can be a tricky conversation to have with parents, especially when the kid is young. I also see a lot of reports where they correctly caught it, but kinda glossed over it during feedback.

BTW- here is my outline of the ID talk

1. draw the bell curve and show where the kid falls on it for both adaptive and cognitive functioning.
2. explain that scores below 70 in both areas mean that he has an intellectual disability, which used to be called mental ******ation (no one knows what ID or IDD actually is).
3. I basically tell them that most people when they hear ******ation think of someone with a Down syndrome. I explain that they typically have what is called a "moderate" level of ID/MR.
4. Explain that there like 5-10x as many people out there with a mild ID compared to those with a moderate ID and you run into them all the time and they appear pretty normal, if not a little immature or slow.
5. They still don't have any way to to contextualize that. So I say "typically someone with a moderate ID can read at a preschoolish level with a ton of instruction by the time they are 22ish. Someone with a mild ID can read at the 2nd to 4th grade level, with a ton of instruction by the time they are 22ish."
6. They still don't understand what that really means, so I anchor it by explain that most magazines/newspapers are written at the 4th grade level.
7. I further explain that we don't really know what causes it, unless there is a genetic cause, or something else. However, it WAS NOT caused by anything the parent did. You were not a bad parent, it's just that learning is really hard for your kiddo.
8. So, let's focus on helping them be as independent as possible, instead of trying to get them to do complex math.
9. Many ppl with a mild ID have a job (not conceptually focused work though), get into relationships, and live pretty independently with some supports for more conceptual tasks. They do pretty good before school and after school. But, schooling is absolute hell for them if the focus is on academic achievement.
10. Most parents already knew the results and are pretty validated by them (also, tell the parent you are testing for ID at the initial).

 

[MAClinician]

In my geographic location, a lot of kids who get the ID label are either identified through school testing for IEP or the pediatrician sent the child for a developmental evaluation due to concerns. The outside evaluations generally explain things to parents better than the schools do, at least around here. So maybe a scenario where the parent receives testing from a school psychologist that they don’t fully understand and bring to an outside provider?

Discussion around independent living skills for IDD individuals across the lifespan and what types of resources/supports are available?

Another common scenario I have come across is when parents with ID end up with child protective services in their life because of allegations of neglect or abuse. And the neglect is often related to the ID parent’s difficulty managing household tasks, keeping up with appointments, or other parenting skills that might come easier for a non-ID parent. So how to support a parent with IDD that may also be involved in with child welfare system? Also, when the kid is smarter than the parent and savvy enough to get around whatever limits the parent tries to set...ethical considerations around that maybe?

And intimate/sexual relations is another area. Once had a 20 year old with ID who was having sex with people she wasn’t very familiar with...and the parents were concerned about harm to the client and pregnancy/STI etc.