My Obamacare Story

Tell the President your ACA / Medicaid Story! https://www.whitehouse.gov/obamacare-share-your-story

The White House wants to hear peoples' personal stories about the Affordable Care Act, a.k.a. Obamacare. I think I know what kind of stories they hope to hear, but the format of their inquiry allows for open-ended, freestyle response, so here what I submitted:

I have had physical disabilities all of my life. Until I was 22, I was on my father's health insurance. He was an independent pediatrician, and I'm sure paid for the family's health insurance out of pocket, though I have no idea at all how much he paid. From my perspective as a child and youth, as far as I know, we never had any problem getting my many surgeries, braces, hospitalizations, and therapies paid for.

Later, my father went to work in public health, and got the family's coverage through the county and later the state he worked for. When I aged out of family coverage, I was able to continue my coverage through COBRA payments, which were expensive, but necessary since going without health insurance was not an option, and a break in coverage would have created a "pre-existing condition" problem for picking up subsequent coverage.

When I finished graduate school I was able to get health insurance from my full time job. My disabilities were never an impediment to full coverage. I paid 20% of the premium for a pretty good plan.

In 2012, after a little over 20 years of full-time work, my disabilities altered and progressed in ways that made it necessary for me to stop working full time. I again continued my work-based coverage with COBRA for about a year. Then, through a combination of the Affordable Care Act and New York State's "Medicaid Buy-In" for working people with disabilities, I was able to qualify for Medicaid and continue to receive it while doing the part-time work that was within my capacities. Having gotten Social Security Disability, I also eventually was enrolled in Medicare.

At the moment, Medicaid and Medicare pay for the ventilator and oxygen concentrator I use every night while I sleep, and for medications I take every day to make my disability-related chronic health conditions controlled. These are life-preserving treatments, and they also make it possible for me to work to the degree that I can. Also, on average, I am hospitalized once every two years or so due to upper respiratory infections. There are effective treatments for this, but of course hospitalization is prohibitively expensive if paid for out of pocket. Without Medicaid, especially, I would be forced into a much more dependent situation and my health would deteriorate severely.

The Affordable Care Act was an absolutely crucial bridge from one work / health situation to another. And Medicaid itself is one of the main foundations of the life I live now. In the future, should I need everyday home care, I know that Medicaid will be there as no other insurance can ever be ... unless Medicaid is significantly cut or made into something less than a direct entitlement. The Affordable Care Act has been a tremendous benefit to me. And by making it possible for me to work to my changing capacities, it has enabled me to continue contributing to my community in the work I am able to do and the taxes I pay.

Disabled people in particular really need to talk in detail about not only Obamacare, but Medicare, Medicaid, and overall what health insurance means for us.

Click here to tell your story.

Disability & Food: First Survey Results

Iconic black and yellow illustration of a plate and eating utensils

On February 18, I posted a survey looking for data on the shopping and eating practices of disabled people ... or at any rate, of disabled people who read disability blogs. Today I'm going to share preliminary results from the 52 people who have responded so far. I would like to get more responses before commenting, so I am leaving the survey open for another week.

You can take the survey by clicking here.

If you have already done the survey, please share it with other disabled people you know, on other platforms.

Next weekend, I'll close the survey, post the final results, write a little about why I'm interested in food and disability, and offer some notes ... maybe conclusions, too ... based on the data and comments.

Here are the results so far:

Respondent comments:

What I can and can't eat, and thus how my food must be processed and prepared, is a huge part of my disability. I eat "frozen dinners" and packets of things I can heat in the microwave, but they all have to be prepared in my home from scratch, a few exceptions of specific brands of things in cans or boxes.

Only recently started cooking at home so much--started treatment for my undiagnosed ADHD in November at age 45. Now I can more easily plan to cook and get the right items purchased in advance, and make time to prepare it. I've wasted a lot of emotions and food over the years on good intentions and poor implementation.

Refrigerated, microwaveable meals Microwaveable boxed pantry meals

i mostly eat food that i get from the grocery store and that comes out of the package edible... like bread. or fruit. everything else, i cannot prepare

I get the majority of my groceries via grocery delivery service. I assumed that counts as home delivery but wasn't sure. That being said, while I do my own cooking, my mobility tends to dictate how elaborate my meal will be. Not that my meals are really that elaborate lol but how much spoon / labor will be involved. For an example, my kitchen is not fully wheelchair accessible, and so if I want to reach certain cabinets etc., I need to be able to get up out of my chair. So there are times, I just don't have access to certain foods in my kitchen and will eat whatever I can reach. For this reason, I very very rarely use the stove. Me and the oven are BFFs though lol

Respondent comments:

Staff take him shopping

I live in a city with multiple food coops. I shop there most often, but no one store carries all the foods I need in a week. Food shopping involves stops at two to four stores a trip. I do not drive and public transport is inaccessible to me. I need rides for all of this.

Respondent comments:

not sure where autism goes in here. also chronic illnesses

Chronic pain/traumatic brain injury

Autistic, and irritable Bowel Syndrome and PCOS. Not a fun combo.

Chronic illness- asthma

Medical conditions

Type 1 diabetes

Disability & Food

Yellow and black simple illustration of a plate and utensils setup

I want to write about everyday strategies disabled people use for shopping, cooking, and eating. I can write about what I do, but I'm curious about others in the disability community. So, do me a favor and complete this survey, so I can see what might be interesting to discuss.

Create your own user feedback survey

4th Blogiversary

Illustration of a yellow and white number 4 with a lit candle on the top

Disability Thinking is four years old today. The blog has definitely gone through phases. I started out trying to blog daily, because there didn't seem to me many disability blogs with new content every day. After the first couple of years, I stopped posting standalone photos, and started to go more towards posting better stuff a bit less often. Now I am trying to settle into a weekly schedule where I post something new and substantial at most twice a week.

I think maybe a year from now will be a good time to either stop blogging as I've known it, or recommit to a more frequent schedule and short, simple content that looks more like a diary again.

That's the great thing about blogging. The format is easy to change, and you don't have to run it by a boss or committee to do it.