I am encountering documentation from a number of well-meaning providers who seem to be 100% following the social model of disability and the recovery model in their notes. Their notes focus entirely on what is important to the person and contain only positive comments.
While I very much support the overarching sentiment here, this type of documentation is not helpful, and can be harmful, when someone needs to document their disability for accommodations or benefits. I'm seeing notes for people who have significant functional deficits, but have figured out their life around these and aren't distressed by it, with absolutely no mention of these. I once completed an evaluation for a family with a teen who has some pretty significant support needs. As with most teens, this person stopped receiving any services around 10, as they had made all of the progress they were likely to make with communication, motor skills, and so forth. The documentation from these services was all framed positively and referred to the teen graduating from the services and having met all goals. The documentation from their ongoing medical providers reported they had graduated from these therapies without any further clarification.
This teen was denied a number of case management and vocational support services, as the medical documentation indicated "doing great with everything."
Remember, most decisions around service eligibility are made by a someone who isn't a clinician, and if they are, they are usually a nurse or physician of a random specialty who isn't versed in developmental/rehab-type services. These people's viewpoint is usually that if someone wasn't doing expected things (working a typical job, independently taking care of household/community tasks, etc.), the ongoing providers would of course have documented this as a crisis and would have mandated intensive services to push those skills.
My recommendation would be to ask the individual or family if they will be needing documentation at any point that documents their disabilities. If so, we might provide a periodic summary that lists what the person does not do or does with extensive accommodations, while keeping our notes in general focused on stability and quality of life when this is the case. I might write something more verbose that captures these dialectics, stating clearly that the person is unable to do X task due to Y conditions, though is fully able to meet their obligations by hiring people, living with someone, etc. We might also ask if the person finds it validating to have documentation that there are things they are unable to do; many disabled people are looking for this and find it helpful, provided it is done in a supportive manner.
Also, remember that for minors, we need to be spelling out when functioning does not meet age norms. Most professionals who are not developmental folks (and certainly most non-clinicians who are determining eligibility) have no idea really how very early most skills occur in developmentally typical children. A number of non-normed checklist tools seem to operate on an idea that people are completely dependent for communication and self-care tasks until 18. Given how many children are carpooled and playdated thus not given opportunities for independence (yet have the motor and cognitive skills to easily learn these tasks if taught them), age norms are particularly important. If I state that a 10-year-old (who has had OT, whose parents have worked extensively on tasks due to the disabilities) is not independent with certain hygiene tasks, the child is likely to encounter gatekeepers whose thinking is that their most 10-year-olds cannot do those things. In this instance, it actually is more effective to use a normed ADL tool and state that hygiene skills are around an age equivalent of 5 years. If the child is using adaptive materials (checklists, color-coding, magnifying mirror, electric toothbrush, adaptive grips), I will state this, and the estimated age equivalent possible without adaptations.
Additionally, we need to remember to ask about and document measures of functioning that are slightly outside of our usual area of focus, but aren't out of our scope. For instance, as LMHCs, while we might be seeing someone for anxiety around a specific issue, if they have an ongoing disability that means there are certain things they don't do, do with accomodations, or do differently than others, we should be documenting this. Reviewers are quick to note that our documentation did not mention that the person only travels with an aide when discussing anxiety in crowds, or takes paratransit to work when we discussed getting out the door on time.
If we are working in settings that only require a comprehensive evaluation be done once (or don't really require it to be comprehensive), we need to make even more sure that our notes refer to things that haven't changed, but still aren't typical. Disabled folks will need to bring current records to school and work that document that they're still disabled. Professionals who are not developmental/rehabilitation folks don't understand that most skills for disabled folks don't change a whole lot after elementary school or so. I see reviewers saying that documentation described extremely impaired self-care abilities due to motor skills during an evaluation at 13, but the person is now 17 and isn't receiving services to work on motor skills, thus their inference is that the skills must be normal.
I still have never figured out whether those checkoff lists for physical exams or mental status exams are looking for whether the item being assessed is typical, or is normal for the person. I can't tell you how many times I've seen physical exams that list an established diagnosis of hypotonia, then muscle tone is checked off as normal. Or vision is checked off as "normal" in a visually impaired person who presumably wasn't having double vision or any signs of acute problems. Some assessment forms used in community mental health (IYKYK) only have ways to indicate how much of a "problem" a particular skill area is.
I dealt with an issue in which a family had a youth who had been born with a limb difference, which hadn't been noted in any medical records other than at birth. The parents were high-functioning in terms of getting services they needed in place without involving their pediatrician, and the child and family had never raised any concerns about needing medical attention or assistance in getting accommodations for the limb difference. This doesn't seem like a problem on the face of it; no medical needs were present, and we should support body diversity, right? It did become quite a problem when something unrelated the child said was misinterpreted by a school staff member (a "my dad would kill me..." type comment), who decided to report to CPS that the child was being physically abused. CPS visited the home, found a child with a missing limb, requested medical records only from the pediatrician and not the specialists, and found that all of the physical exams listed "extremities: normal."
Also, with a situation like this, while the Americans with Disabilities Act guidance discourages organizations from requiring documentation for accommodations when a disability is obvious, most places want "something on file." When they need to provide this documentation, this family should be able to download their child's last physical, which should list the limb difference and if the child uses any type of prosthetic.
Regardless, if we are going by "normal for the person," we need to put something in notes. If I'm seeing an autistic person who generally has a rather flat presentation that isn't concerning, I can check off "full range of affect" and "congruent facial expressions" if I am working somewhere that uses a prefabricated assessment, but then should put in notes "presentation is fairly flat at baseline, is nonconcerning, is appropriate for an autistic person." If I just check that it's normal, someone might review that note, meet the person, and deduce that it's new or unusual that they seem fairly flat.
Remember, people in general are really ableist, and they expect that healthcare professionals especially share these worldviews. These people have a terrible time wrapping their minds around a note that describes someone as happy, healthy, and successful even when it does clearly spell out that the person does not walk or read. If we don't even document the things the person can't do, they will completely make up their mind that someone being described as stable and functional is obviously nondisabled.
