Just Stimming…

A land we can share (a place I can map)

These things are not luxuries

with 4 comments

Historically, Washington, DC has only provided home and community-based services (HCBS) to people with developmental disabilities who also have an intellectual disability. This year, DC is joining most of the rest of the country in expanding eligibility to include people with developmental disabilities, like autism, who don’t also have an intellectual disability but still need help with daily living. I was asked to testify at a forum today about why this is so important. Here is what I said:

Thank you so much for having me here today. My name is Julia Bascom, and I am a DC resident. I’m a white woman with brown hair and glasses. I am autistic and I have other disabilities as well. When I heard that DC was expanding eligibility for HCBS to people like me who don’t also have an intellectual disability, I was so excited. I want to tell you what this policy could mean for people like me.

Because of how my autism works, I cannot live on my own. I need help every day. But it is not safe for me to live with my family of origin. When I first left home, I tried to live on my own for a few months. Even with my friends trying to help me, it was a dangerous situation. I struggled to take a shower, eat, or go to work. I became very sick, and very weak. I thought I was going to die.

Thankfully, I had a friend who was willing to become my roommate and provide me with daily , live-in support. For the last nine years, my friend has provided me with substantial support, every day. Because I have that support, it means that most days, I eat enough meals and at least one vegetable, take my meds, take a shower if it’s a shower day, and go to bed before I collapse. If I need medical care, I get it. These things have not always been true for me, and they are never things I can take for granted. My roommate’s support keeps me alive, and makes it possible for me to work and to have a good life.

The person who supports me deserves to be paid for the work that they do. But because I don’t have an intellectual disability–“just” autism–I haven’t qualified for DC Medicaid. So there isn’t funding for my support. I have to rely on the kindness of friends, and my friend who provides the bulk of my support has to work a second full-time job. This is wrong. And it also means that, if my roommate has to work an evening shift at their paying job, I might not be able to eat dinner that night. That’s wrong, too.

Sometimes people are surprised to hear how much support I need. I can talk and use big words, and I have a fancy job. This is actually pretty normal for autism–we have research that shows that autistic people with high IQs still struggle with things like executive functioning and daily living skills. So for me, that means I can do lots of policy work, but I can’t follow the directions to give myself a COVID test. My roommate has to help me. Every autistic person is different, but most of us need some help with daily living. If we need help, we should be able to get it. And we shouldn’t have to rely on unpaid friends and family members to be able to do things like take a shower or go grocery shopping.

I don’t like to talk about all of the things I can’t do, or all of the things I need a lot of help with. But I want you to understand how important expanding eligibility for services is. So here are just some of the things I need support to do:

–I need support to remember to eat enough meals during the day, to figure out what I can eat, and then to actually get the food.
–I need someone else to cook most of my meals.
–I need prompting to take a shower or brush my teeth.
–I need someone to make sure I go to bed. I need someone to remind me to change into pajamas and take my meds at night.
–When I get really upset or overwhelmed, I need someone to help me keep from hitting my head.
–When I get hurt, I need help remembering to get ice or a heating pad or take ibuprofen. When I don’t have that help, I do things like walk half a mile on a broken ankle.
–I need someone to go to the doctor with me.
–I need help running almost any errand. I need someone else to do the grocery shopping, because it gets too overwhelming.
–I need help scheduling appointments and filling out paperwork.
–A lot of the time at night, and sometimes during the day, I freeze in place and have a hard time moving. I need someone to prompt me and coach me to get me moving again. Otherwise I can be stuck in the same place for hours, not doing anything.

And until this new policy, DC didn’t think I needed any help at all.

This is not a list of everything I need help with. These are just some examples. But I hope these examples help you understand that the services that would be made available under this policy aren’t luxuries or things that are just nice to have. They are necessary for survival. Without support, I can’t have a good life. If I go too long without support, I could die.

A lot of the time, when Medicaid provides support, it only provides support for physical help, and only for things like eating, bathing, and transferring. If you need support besides physical help, or if you need help with things like cooking or going grocery shopping but not with eating itself, you might not qualify for Medicaid. Or, you might only qualify if you have an intellectual disability. When I’ve applied for Medicaid in the past, I was told I didn’t qualify because I don’t need very much physical help and my IQ was too high. But that doesn’t make any sense. If I can’t go grocery shopping and I can’t cook, or if I won’t eat without reminders, it doesn’t really matter if I can lift a spoon to my lips by myself. There’s not going to be any food on that spoon without support. And it doesn’t really matter what you score on a test if you can’t actually feed yourself.

I’m glad to see DC recognizing that, and making it more possible for people like me to get help without needing a certain IQ score. How successful this change is will depend a lot on the details. How are people with disabilities going to be assessed? Who will count as needing enough support? I believe this policy will fail if, when it’s implemented, it still leaves people like me behind. The assessments and tools that DC uses must recognize all the different ways people might need support with daily living, and not get distracted by other things.

In the end, I know I might not benefit personally from this policy even if it is done well. Because of the support my roommate provides, I can work a full-time job, and that means I make too much for DC Medicaid. DC is one of the only places in the country without a Medicaid buy-in for workers with disabilities, and I hope we can come back and fix that soon.

But even though I don’t know if I will personally benefit right now, I do know that I am not unique. Like I said earlier, most autistic adults need some kind of help with daily living. Some of them need a lot more help than me, and some of them need a lot less. Some of them also have intellectual disabilities and might already be getting services. The rest of us have been waiting. All across the district, autistic people and people with similar developmental disabilities are wishing we had the support we need to move out of our parents homes, work, and live good lives like our friends. Thank you for making that possible.

Written by Julia

May 19, 2022 at 1:26 pm

Posted in advocacy

4 Responses

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  1. Thank you so much for saying and sharing this.

    Eve Reiland

    May 19, 2022 at 8:33 pm

  2. A lot of this sounds like my son, if I don’t remind him there’s a fairly good chance he’ll forget to eat lunch since everyone does their own thing at lunchtime, he can cook noodles or baked beans or cheese on toast. Dinner we all eat together, but we still need to remind him several times to come to the table or he’d stay on the tablet/PC until after dinner was cold. Teeth and shower (especially hair washing) would probably never happen without reminders and he wouldn’t go to bed until he collapsed. He’s due to be reassessed for his ability to work this coming week to see if he continues to get benefits; but unless he could find a job where he’s supervised constantly that’s not something he’ll be able to do as he’s too easily distracted and often can’t see any good reason to do whatever it is he’s asked to do. He’s about to turn 18 and I’d love to think that he will be able to work since that would give him a much better life financially speaking, but I can’t see it at the moment. We’re not giving up though, we’ll continue to support him through the next 3 years at school and see what happens then. We’d also love if he could live independently since we won’t be around for his entire life, but he’ll definitely need support for that and there are limited spaces available in the programs that are run here and a lot of demand from people who have all sorts of disabilities.

    sewsable

    May 21, 2022 at 6:12 pm

  3. Reblogged this on How Autism Self-Advocacy Revolutionalized My Life and commented:
    So true, in so many ways!! And so well said. Just have to reblog this.

    Kim

    July 18, 2022 at 9:11 pm


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