Providers: Don't forget to continue to document stable/lifelong disabilities

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. 

Disability nonprofits and other advocates: Stop promoting this idea that people should provide their own accommodations

I am getting quite frustrated with leading U.S. disability nonprofits platforming these parent-led initiatives that focus exclusively on parents providing their child's accommodations with absolutely no mention that this is to be a last resort when a program is not following the law and a family still wishes to be included. I'm seeing disability nonprofits posting on social media about parents spending extensive time modifying materials for extracurriculars and providing inservice trainings about their child's disability, and this is being promoted as normal and encouraged. I'm seeing things like "tips for success at summer camp for kids with [disability]" that focus on the parent providing all of the accommodations and modifications as well as the general staff training around disability, not just the training specific to their child's equipment and methods. 

Of course I am not going deny the reality that disabled folks and their friends and family frequently end up providing their own accommodations, nor am I going to suggest that any one individual should stop doing this in any particular situation. Of course people make the informed choice every day to provide their own accommodations so they can be included somewhere, and it would be ridiculous to suggest that someone forgo every service or experience just to make a point. All of us who have a less-common need or someone in our lives who does are all-too-familiar with the idea of "having a super low bar" and frequently settling for things that really aren't ideal. 

And of course it's a normal and natural part of interdependence that most disabled folks who go into a restaurant or museum with family or friends are going to have those people provide most of their accommodations such as reading things or reaching things rather than requesting that the staff do it. The point here of course is not that friends-and-family-as-accommodations is necessarily a bad thing. 

What's missing here though is that so many of these resources don't once mention that if you're in the U.S., and you're dealing with a business open to the public, the place most likely has to provide accommodations. There are only a few rare exceptions. Most businesses are not aware of these obligations, and frequently will ask someone to bring their own accommodations. They e-mail back someone stating they need to communicate in writing and say their business only uses the phone for that ("you'll need to have someone make the call for you then"). They state they don't have screen-reader-accessible versions of the forms they haven't updated in 20 years ("someone can help you fill it out"). 

The other thing with the ADA is that enforcement is difficult. In most cases, what people do is go somewhere else or provide their own accommodations. I don't begrudge anyone for not formally pursuing ADA violations. 

However, I also am a behavior science person. I can tell you with a high degree of certainty that most people are not in the habit of just doing whatever the hell they want until someone in authority stops them. Most people overall want to do what's good and helpful and prosocial, but also tend to do what's normative and what's been modeled for them.

If someone works at a summer camp and their experience is that disabled kids have their parents provide all the accommodations and train their staff, they have no reason to understand that this is unjust and shouldn't be happening. There is no reason most people would know that the ADA obligates any public place to spend some degree of time and money to put accommodations in place -- even if they looked at most of the ADA materials put in place by the government and nonprofits, these are mostly about structural access requirements and they're going to believe that the ADA only tells places to have wheelchair ramps and lowered water fountains. When a parent comes in and makes a request under the ADA to have the camp provide a low-cost or no-cost accommodation such as having their staff watch some YouTube videos about accommodating the disability and providing large-print materials, this may be the first time the camp director has had anyone make this type of request, and the camp director may in good faith tell the parent that that sort of thing is provided by parents. If the camp director follows disability organizations on social media and is seeing them post content about parents modifying the materials for summer camp with no mention that the camp is obligated to do this...ugh. 

So again, in this situation I wouldn't begrudge the parent who makes the materials and sends their own aide for a weeklong day camp on their child's favorite topic rather than not attending or attending but being excluded. As much as I know that people often end up providing their own accommodations, I do absolutely encourage parents to initially send in ADA letters stating what is needed and reminding the organization of their obligations, and to model this human right for their children. I encourage families to push this to whatever extent is safe for their family -- especially when dealing with a well-funded organization with a high degree of community exposure -- by doing things such as contacting their regional ADA Technical Assistance organization and forwarding the e-mails clarifying what the organization's obligations are.

If you see these posts, please do some advocacy by leaving them a polite comment that they need to remind parents that summer camps, sports teams, music schools, YMCAs, etc. (basically everywhere except for religious organizations performing religious functions) are covered under Title III of the ADA, and they should be providing these accommodations.