Medical Motherhood
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How to use ChatGPT to simplify the stuff you need to do for your disabled child

How to use ChatGPT to simplify the stuff you need to do for your disabled child

The new AI could save you time and mental effort in so many ways

woman in brown coat carrying child in orange and white striped polo shirt
Photo by Joice Kelly on Unsplash

Life is just too darn complex.

I say this a lot, but it’s true. Especially for those of us raising disabled children, the web of rules, restrictions and justifications we have to crawl through can often be downright suffocating.

Wouldn’t it be great if you could just have a robot do all that for you?

Well, an all-powerful solution may still be a ways off but ChatGPT may be the next best thing. For those who haven’t heard about the artificial intelligence (AI) program taking the world by storm, this is a free website that anyone can use to generate schedules, recipes, essays, emails, just about anything. The interface feels just like chatting with a human. You simply ask it questions and converse or make corrections.

The writing it produces is shockingly human-like — which is certainly causing concern about the potential for plagiarism, fraud and realistic fake news — but I think it can also be used for good. I can’t think of a greater good than snipping the strings of the web that ensnares disability families so that they can spend more time on the stuff that really matters: their kids.

Some caveats before we get started. Chat GPT is owned by OpenAI, which is a private company that uses open source code. There is a risk that your account could be hacked and OpenAI does plan to monetize its currently free tool. You should use discretion about what you put in to ChatGPT and how much you trust what comes out of it. Also, it is in high demand, so save any conversations you want to keep with it in a separate document and you may have to reload your conversation if it has an error.

After I made the following list, I asked ChatGPT itself how it can help and it generated the following. This is an example of what it can do.

Shasta: What are some ways that you, as ChatGPT, can help families of disabled children? What are some things they could ask you to do in order to simplify their lives and advocate for their children's needs?  ChatGPT: As ChatGPT, I can assist families of disabled children by providing information on resources and support services that are available to them. I can also help them navigate the complex systems and processes that are often involved in accessing services and benefits for their children. Additionally, I can assist with research and provide information on educational and therapeutic interventions that may be beneficial for their child. They can ask me to help them find and understand information about specific disability-related topics, such as educational laws and regulations, financial assistance programs, and medical treatments. I can also help families to understand and communicate their child's needs, and provide advice on how to advocate for their child's rights and best interests.

Pretty cool, huh? Ok, without further ado, here are eight human-generated ideas for how to use ChatGPT to simplify the complexities of medical parenthood. Just remember: always read and edit what it produces to make sure that it is true and what you really mean to say.

  1. Write a nicer email to your kid’s teacher. Ok, we’ve all been there. You found out something happened at school and you are livid about it. Or, perhaps more often, something that was on your child’s Individual Education Plan didn’t happen and you are livid about it. The first draft you want to dash off is not going to build any relationships and — if that’s where you still need to be to advocate for your child — you might need help getting to the point with a little more grace. ChatGPT can take your expletive-ridden tirade and turn it into a pleasant but firm request and opportunity for partnership.

  2. Figure out what to cook for dinner with what you have — even for special diets. After Christmas, we still had a lot of ham. So I asked Chat GPT for ideas of things to make with ham that were still healthy but didn’t have too many vegetables as the people I live with are not big fans. The five ideas it came up with would have been yummy to me but one eater is gluten-free and my family prefers Asian cooking so I followed up with that request. Chat GPT gave me more suggestions and then, when I asked for it, the recipe for a simple fried rice dish that was a big hit. This all took seconds. That saved me time, money and a headache.

  3. Decide what to do this weekend, even for kids with mobility or other challenges. Though I vastly prefer my account of fun and accessible things to do in Portland, as it was more thorough and didn’t include a permanently closed site like the ChatGPT list did, it is remarkable how fast it came up with ideas of places to go with kids in wheelchairs. It does not know current events, but it is good at generating ideas within the parameters you give it.

  4. Figure out what that Latin word means in your child’s medical records. Yes, we all know the dangers of trusting Dr. Google, but with even medical students using ChatGPT to learn (and cheat), it does seem like a good way to get some information before your next appointment with an expert. I would also say that it might be a good way to write up a short summary of your child’s medical history from notes — as our complex kiddos always seem to need — but because I don’t know where the information goes or what might be done with it, I would caution against providing it a full list of diagnoses. It’s important for us to keep control of our children’s sensitive data in this brave new world….

  5. Figure out what that document really says. ChatGPT can help interpret bureaucratese for you. Say you have a document like oh… say… the expenditure guidelines for the Medicaid waiver that your child is on. You can send Chat GPT the link to it and ask it to tell you what it says in plain English, which it will do. Then you can ask follow up questions, like “will it pay for a swing that my child needs” and it will give you a fairly reasonable answer of why it might and why it might not. You could also ask what it will pay for and it will give you a list of examples and requirements. Keep asking questions to drill down into what you need. Is this better than a knowledgable and skilled human case worker who wants to help navigate you through the system? Absolutely not. But it is very helpful for learning more about the system, just in case you don’t have one of those.

  6. Help you write the parent input section for an IEP. Again, use discretion about what details you provide the robot. You can simply ask for an example parent input section. But, ChatGPT did tell me that it does not have the ability to collect or store information typed in the chat box. If you feel comfortable offering information about the types of diagnoses, challenges and strengths your child has, you’ll be amazed at how well written its accommodation requests are. Then, you can tailor the outline to your own child’s situation and needs.

  7. Coordinate a complex schedule. While ChatGPT cannot integrate with external tools like your Google calendar (yet), you can give it a list of complicated information and ask it to generate a schedule for you. Let’s say you have five different caregivers and they all have different availability and your child has therapy appointments every other Monday that a caregiver can’t take them to — put all that information into ChatGPT and watch as your headache melts away.

  8. Tell it your trauma story and maybe gain catharsis. In a nutshell, the trauma response means that we get stuck in a certain story or thought pattern, unable to see alternatives or a different conclusion. So, we repeat the same cycle over and over — reacting the same way to similar situations. One thing I tried with ChatGPT was to tell it about 200 words of my story and ask how the story ends. (I’m not the only one with this idea. A therapy provider tried it too.) It came up with a nice Hallmark movie-esque conclusion that I found very cheesy but also very charming. Who knows how my story will actually end. But I do like the future that ChatGPT described of a best-selling author who uses her experience to lift up and validate other families’ experiences while helping her own children succeed with an empowered relationship with their disabilities. Who knows? Maybe now that I can imagine it, it will be so….

Anyway, this is just the beginning. ChatGPT is a “language model AI” and so has limited capabilities. But a full AI will be able to integrate with other tools, like even schedule appointments for you!

A final tip: the thing you write to an AI is called a “prompt.” You can get better results the more information you give it and if you tell it what role you want it to play (“act as if you are a ______”).

What do you think? Will you try ChatGPT? Or does the technology freak you out? Leave a comment or reply to this email.

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Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Tennessee Lookout: “New law requires Tennessee Children’s Services to cover kids 18-21 leaving state custody

A new law taking effect this month requires the [Tennessee] Department of Children’s Services to add additional services for kids leaving state custody who are between the ages of 18 and 21.

The law requires DCS to pay low-income relatives of those children stipends set at 50% of the rate paid to foster parents while kids transition from teenagers to adults.

According to state estimates, more than 400 young adults will be enrolled in the extension-of- foster-care program in its first year. The state has budgeted $3.9 million to pay relatives caring for former foster kids in the program – an average daily rate of about $21 per family. […]

• From ABC 6 News (Iowa/Minnesota): “Lawsuit: Failures for Children’s mental health

A class action lawsuit has been filed against the state of Iowa brought on by a number of groups including Disability Rights Iowa.

It claims the state is failing to provide mental health care for thousands of Medicaid eligible children.

[…ABC 6 News reached out to Iowa’s Department of Health and Human Services, which responded:] “The state remains committed to serving all iowans with special health care needs, especially children. We take our role serving iowans seriously, as demonstrated by our transformational work over the past three years which will continue.”

“Without these services, kids really are failed over and over, over multiple years and then they graduate into the adult system and sometimes like the criminal justice system or mental health where even less is available to them, so it really is a sequence of failures that ultimately spiral into a place of these kids being continuously in trouble,” said Cathrine Johnson, Executive Director at Disability Rights Iowa. […]

• From Kaiser Health News: “To Attract In-Home Caregivers, California Offers Paid Training — And Self-Care

[…There are] many offerings from the California Department of Social Services that the agency says is necessary for attracting and retaining caregivers in a state-funded assistance program that helps 650,000 low-income people who are older or disabled age in place, usually at home. As part of the $295 million initiative, officials said, thousands of classes, both online and in-person, will begin rolling out in January, focused on dozens of topics, including dementia care, first-aid training, medication management, fall prevention, and self-care. Caregivers will be paid for the time they spend developing skills.

[…]The in-home assistance program, which has been around for nearly 50 years, is plagued by high turnover. About 1 in 3 caregivers leave the program each year, according to University of California-Davis researcher Heather Young, who worked on a 2019 government report on California’s health care workforce needs.

[…]Many caregivers who attended early courses care for family members with a mix of physical and behavioral needs. In fact, 3 out of 4 caregivers in the in-home assistance program are relatives of clients. But the state needs to prepare for a workforce shift, one that requires people to look outside their families. The number of California seniors is expected to be nearly 8.5 million by 2030, an increase of more than 40% from 2019. Many of them will be single.

[…] Recent surveys suggest that caregivers are likely to be interested in self-care. In a review of nonprofit caregiver resource centers in California, 35% of caregivers reported that their health had worsened while providing care, and 20% had experienced symptoms of depression. Some caregivers also reported being lonely, which could include lacking companionship, feeling left out, or feeling isolated from others. And a 2020 report by the National Alliance for Caregiving and AARP found that 26% of caregivers had difficulty managing their stress.

Robbie Glenn, a single father in Anaheim, attended [...a…] self-care class and learned to take time for himself. By day, Glenn cares for his 11-year-old son, Edin, who has birth defects from alcohol exposure and has nonverbal autism. Edin needs help going to the toilet and bathing. He has epilepsy and sometimes walks in his sleep. By night, Glenn freelances, doing post-production work, such as film editing and color grading.

Glenn now uses a timer to remind himself to take a break. “And,” he said, “I’ve been doing those breathing exercises a lot.”

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