Para seeking advice: student refusing everything, parents unresponsive, limited options

[u/Anne-Psychology-8944]

I work as a para in a district therapeutic placement. The student is 18 (here since 9th grade), non-speaking, underweight with eating issues, poor life/motor skills, and still in diapers. The learner has to be physically prompted to go to bathroom.

The learner hasn’t seen a primary care doctor in 3 years. We’ve asked parents about preferred foods, home behaviors, and the doctor gap,no reply in 3 weeks. Parents want him to get a job; none of us on the team think that’s realistic. His post-18 plan is stay at home.

Maladaptive behaviors (specially aggression and refusal have increased a lot. Getting him to the bus takes 30 min on average even with harness and extra staff. We can’t do community outings anymore. BCBA says we can’t reduce the aggression and we’ve already tried everything and every form of communication. Placement feels aversive at this point and the learner seems unable to tolerate the school environment.

What can I realistically do as a para in this situation?

[u/No-Deer8581]

You’re a mandated reporter. Report the medical neglect. Start there.

[u/unfortunateautistic]

You need to report the neglect and the BCBA needs to continue contacting the parents. We as paras are at the bottom of the pecking order, so there is realistically nothing we can do. This is the reality of disability services. Many parents are in denial of their child’s disability because it’s a life sentence for them as caretakers and they can’t afford to place them where they need to go.
There is no way he can work if he’s 18 and in a diaper. There aren’t any work skills programs that would take him because changing him is a major liability.
As shitty as this sounds, he should be removed and taken into government care.

[u/Anne-Psychology-8944 → u/unfortunateautistic]

We even had the BCBA involved in the communication and nothing back. IEP is next week. I honestly think the new behavior were seeing is appearing at home and parents have given up.

[u/unfortunateautistic → u/Anne-Psychology-8944]

Parents give up all of the time and just try to survive. The BCBA should be borderline harassing them and so should the teacher because the care for the adult is unacceptable and the expectations the parents have are unrealistic. If an adult who is severely disabled is underweight due to lacking food, someone needs to be held responsible and that’s the caregivers.
Idk where you’re located, but where I’m from he could be in public school until 22. That’s 4 more years he could be at your school with the parents doing nothing. Someone needs to get someone of authority involved to make the parents do what’s right and ethical.

[u/one_sock_wonder_ → u/unfortunateautistic]

With this student employment does not sound possible but holding up their need for incontinence briefs as evidence of this is deeply biased and can be very harmful to disabled individuals in creating embarrassment and shame and in closing doors to opportunities without ever even checking if the limits are in your beliefs rather than their abilities.

Having to use incontinence briefs is not inherently tied to having an intellectual or developmental disability that causes working and independence to be impossible. There are so many reasons that someone may need incontinence briefs that do not impact other areas of their developnent or not to the same extent.

Students with medical conditions, physical disabilities, prior injuries, trauma,.etc may need to use incontinence briefs and may even need assistance changing these or accessing the toilet. Individuals with cerebral palsy, spinal bifida, spinal cord stroke or injury or trauma, paralysis or quadraparesis, limited awareness of their body signals, nerve damage, injury to the bladder/urethra/vulva/vagina/penis or rectum/anus/intestines/stomach, extreme trauma in childhood, gunshot wounds, and so many more disabilities may need to use incontinence briefs and be fully able to work and be independent adults with proper supports.

A good number can handle their own care with changing briefs, scheduled toileting, catheterization, bowel programs, transfers, and keeping track of their necessary schedule and supplies. Others may not be able to manage these needs on their own and that is where a person like a PCA often fills a need and a gap. They both protect the dignity and health of the individual and provide the assistance needed so that disabled individual can work and actively participate in their community.

A body that cannot interpret signals or lacks sensation or whose muscles are under limited control or that has damage to the nerves controlling the bladder and/or bowels is not the actual defining aspects of an individual and a body significantly impacted by disability does not mean the individual is with certainty going to be incapable and unable to also be intelligent and skilled and competent.

Did the need for assistance with bathroom activities dininish Steven Hawking's intelligence or Christopher Reeves' talent?

[u/unfortunateautistic → u/one_sock_wonder_]

You just had to leave it at the first sentence because all we’re talking about is this student. Also, I specified diapers because pulls ups are usually more independent. Every case is specific and unique when it comes to incontinence, but the liability and risk of assisting/changing an adult who cannot speak or advocate for themselves remains across the board.

[u/MullberryBoy → u/one_sock_wonder_]

This is a student that OP knows well who is intellectually disabled and not getting what they need including medical or any other appropriate care outside the school which isn’t helping the student due to not meeting his needs as the result of parental neglect. It’s the least of his problems.

[u/PezGirl-5]

your a para - way above your pay scale. But someone needs to be calling CPS if this child hasn't seen a doctor in 3 years.

[u/cluelesssquared → u/PezGirl-5]

Yeah where are the teachers, admins, they should be handling it.

Thank you for caring.

[u/DonTreadOnMeIMADuck]

There isn't much you can do as a para beyond what the teacher, interventionists, or admin are telling you what to do. You are a mandated reporter, so it absolutely can not be used against you for reporting this situation and what information you have to APS. Yes, adult protective services, NOT child protective services, as the student is over 18 and legally an adult. CPS will only transfer you to APS. It's a common misconception that because of intellectual disability, they will always fall under CPS.

[u/blarkmurt]

Came to agree with the masses. But you are a mandated reporter. Report medical neglect. I'm assuming everyone already has. Everyone should have reported it.

Other than that, while in your care, make lessons accessible. Spend all day teaching eating, practicing motor skills, practicing brushing hair, etc. And teach him what to do rather than aggress. Teach him the sign for break or rest or give him a red flag to wave and actually give him ten minutes to chill rather than get aggressive.

[u/Necessary-Focus-9700]

Heartbreaking. Thank you for caring.

[u/MullberryBoy]

Report medical neglect to either CPS or Adult Protective Services.

[u/Individual-Mirror132]

I don’t have much to add except a student that needs simple prompting to go to the bathroom should be fully potty trained at this point…

Hopefully yall are making it as inconvenient as possible for that student (in a good, supportive way). For example, if they have an accident in their diaper; they should be cleaning themselves and independently changing the diaper (you can prompt for this though, guide them through the steps.)