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: Results and Conclusions

Iconic picture of a meal place setting with black lines on a yellow background

120 people completed my online Disability & Food survey. That's a pretty good number, and the final results look pretty much the same as they have looked all along, which suggests they aren't just random. I don't know that I have any stunning conclusions, but let's see the results and explore what they might mean.

Question 1 "How often do you have the following kinds of meals?"

Results:

  1. Home prepared and cooked (strongly weighted)
  2. Cooked and prepared by someone else
  3. Frozen dinners
  4. Home delivery or take-out
  5. Eating out at restaurants
  6. School, college, or workplace cafeteria
  7. Meal kits by mail
  8. Meals provided in a residential facility

Respondent comments:

Home prepared once & ate for a few days like lasagna- often

Eat what's ready: fruit, chips, etc. Also try to cook batch like soup, stew, etc that'll last for days. I forget to eat & cooking for 1 when can only eat 1/2 cup at a time takes more energy & pain than it's worth.

I live alone.

Medical Formula, by mail

I work at a restaurant and very often scrounge from food orders that were messed up or good that is made specifically for the crew to eat. Plus I get an employee discount. But then there are days when I am too tired mentally/physically or in too much pain to expend energy making something myself. I really need to invest in a good delivery service. Recently I've invested in a business that will send you meal cups in the mail (like 24 at a time) and you just need to add water. I got them thru Amazon. I know I spend too much money on eating out but it often simplifies things, as well as cleanup.

My partner does the cooking now that my physical health has deteriorated further.

The majority of what I eat is probably "snack" food. My condition uses up a lot of salt, so I eat a lot of salty potato chips and gatorade. Otherwise it's stuff I can either open up and eat directly (cheese sticks, canned olives, jerky, etc) or stuff that requires a quick zap in the microwave (pre-cooked sausages, gluten-free corn dogs, leftovers from a restaurant, etc)

I am celiac, so I prepare most of my own food so that I do not get gluten-ed.

I frequently eat shelf-stable food that doesn't need to be refrigerated because I know that sometimes I won't be able to leave my room. So I stock up on things like granola bars and beef jerky a lot of the time.

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

Thoughts:

I was surprised to see home preparation and cooking pretty far in the lead. I guess I assumed that disabled people would be less likely to do their own home cooking than most.

If you look a little deeper, you see that even though home cooking came out on top, only 40% say they do it all or most of the time, and most respondents seem to rely on a roughly even mix of home cooking, cooking done by someone else, frozen dinners, and delivery / take-out.

Several respondents note in their comments that they rely heavily on home cooking because of very specific dietary needs related to their disabilities. This is a wrinkle that I had not anticipated at all, probably because I have never had any health or allergy-related food restrictions myself. Nor am I a vegetarian. In fact, I've only recently started to think much at all about the quality or healthiness of my diet. I'm not sure if that's a privilege or a liability.

One thing that promoted me to set up this survey is the recent popularity ... at least in the media I consume ... of home delivered meal kit subscriptions, like Blue Apron and Hello Fresh. So, it's interesting that this option got the next to lowest score of the 8 options I offered. Maybe it's the high cost. For me, it's because the recipes all sound too fancy and hipster for my tastes. In all of the ads I've heard for these services, I have never yet heard a described recipe that sounded appetizing to me. Besides, they sound convenient, but probably still require a lot of labor before you can actually chow down.

Q2 Sources: "How often do you get your food from the following?"

  1. Supermarkets (very strongly weighted)
  2. Someone else shops for you
  3. Delivery from online shopping sites
  4. Neighborhood markets or farmer's markets
  5. Convenience stores
  6. Delivery from local stores

Respondent comments:

I V fluids via medical supply

I interpreted 'online shopping sites' to include online supermarket ordering and delivery.

Where your questions only go down to almost never it's actually never which you haven't got

Protein powder online. Shopping is usually once a month. Buy to last. Maybe occasional trip out. Shopping is painful.

I shop for my own groceries.

Due to coordination, vision limitations I cannot use the apps/smartphone/do financial transactions on smartphone or computer, which prevents me from shopping online and most delivery places. I often go hungry as a result.

Grow my own food - very often

Local non chain shops, butcher, fishmonger , greengrocer ( fruit, veg & healthy groceries e.g.. GF products, ) good quality and locally grown organic produce etc quality breads, sheep/goat yoghurt etc.

The only money I have for buying groceries is my food stamps, so I'm very limited in where I can buy food. If I eat out it's always my partner paying.

I am celiac, so I prepare most of my own food so that I do not get gluten-ed.

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.

Thoughts:

Supermarket shopping comes out on top, by a very wide margin. Again, that surprises me. I probably should have added a question or two about transportation and geography though. Most people consider supermarkets the best and most economical place to get groceries, but I wonder how many disabled people can't use them easily because they live in places without supermarkets and lack transportation to get to them.

The next two most heavily weighted categories ... someone shopping for you and takeout / delivery ... both rely on others, and probably also can be done without leaving home. These are the kinds of options that one would expect to be popular among disabled people. But again, they're not as heavily relied upon as one might conventionally predict.

Respondent comments bring up diet restrictions here, too, but also limited income and physical inaccessibility as factors that shape and restrict how people get their food supplies.

Q3 Disabilities: "Which category(s) best describe your type of disability? (check any that apply)"

97 with physical disabilities
51 with mental health disabilities
31 with sensory disabilities
20 with other cited disabilities
19 with cognitive disabilities
15 with learning disabilities

Respondent comments:

developmental disorder

Language

Severe food, environmental (including inhalant) allergies--often requiring hospitalization

Autism

Autism (unsure where to put that)

Eyes fatigue easily, and after many years of difficulty and little help due to invisibility of my disability (which is TBI) I am exhausted and don't h ave energy for interacting with others, constantly teaching, explaining etc. since no one understands.

chronic illness

In addition to mobility disability, have medical conditions affecting diet

hearing loss, food allergies

health disability, autistic

Autism, then not listed above- 1 of my kids is autistic, one has Down syndrome, both have anaphylactic food allergies, I have a medical concern that requires me to eat a totally different diet than my partner and kids

Visual

Autistic with sensory sensitivities, IBS, Coeliac, Lactose intolerant, Hypothyroidism, Chronic Fatigue Syndrome, Cancer survivor surviving radical surgery, heavy duty chemo, radiotherapies, Restless legs Syndrome, insomnia, and more, GAD

Food allergies play a major role in my eating/shopping habits

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

Thoughts:

I probably should have included a few more disability types, since there is a lot of overlap and ambiguity among these very broad, generic categories ... particularly mental health, cognitive, and learning disabilities. I also wish I had added a chronic illness category for people with conditions that more readily fall into that category.

On the other hand, I think allowing people to choose more than one category means we get a pretty good picture of who is responding, and the vast majority of respondents had some kind of physical disabilities, sometimes along with others.

So?

Those are the survey results, in detail and summary. But what about my own shopping and eating habits?

I do most of my grocery shopping online with delivery by mail. I order once a month. I've only been doing this for about 4 months though. Before that, I shopped at a supermarket about once a month, and picked up things at convenience stores here and there. Even though I drive, my shopping was definitely too irregular, physically difficult, and unnecessarily expensive.

Before I started grocery shopping online, my biggest problem was getting fresh fruit and vegetables, buying household supplies in bulk, and getting anything large or heavy ... like big bottles of milk, juice, or soda, or big bags of sugar (for my twice daily tea).

I eat frozen dinners about half the time. A quarter of the time I eat take-out, and another quarter is conventional home cooking.

Speaking of fruit ... and the mini-controversy last year about whether selling pre-cut or packaged fruit is wasteful or accessible ... I do buy pre-cut fruit and bagged salad, as well as large boxes of single-serve fruit cups.

I often think about these new meal kits by mail services, but I never seriously consider them because they are expensive. And anyway, their big selling point seems to be that you don't have to worry about ingredients or portion sizes. I used to have that kind of problem, but at this point I know pretty much what I will and won't actually prepare and eat. For me it's not hard to figure out. But for others it might be more of a thing.

Conclusions:

I don't really have any, except for this:

If I had unlimited power and resources to make one radical change in American society, I sometimes think I would institute free public breakfast buffets. Two things make me think about this:

TV shows about the British upper class, where everyone just comes to the dining room in the morning and the servants have laid out a full range of breakfast foods on a big sideboard.

Motel chains that offer free breakfast.

My life would improve enormously if I could easily got to a big breakfast buffet every morning and just dish up a plate of whatever looked good. You could do the same thing with lunches or dinners, but for me, breakfast is the thing. I love breakfast food, but it tends to be labor intensive, and my body is at its worst in the morning. It's the time I need good food the most, and am least equipped to prepare it.

What new kinds of food or shopping services would improve your life and independence? What changes have you made in this area that have made a difference in your life? Are these strictly matters of individual planning and innovation, or are there larger-scale systemic changes that would be both feasible and helpful to disabled people?

Share more of your comments below! And thanks for helping with this survey!

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

Disability Debate Questions

Circular logo of the Open Debate Coalition

A bipartisan group of organizations has set up a website called Open Debate, where you can submit questions for the next Presidential candidates debate, and vote for questions others have submitted. The debate organizers will consider the top 30 questions as of Sunday.

As organizers of #CripTheVote, Alice Wong, Gregg Beratan, and I have submitted this question:

Obviously, we'd like everyone to vote for it, to give it a fighting chance of being asked at the next debate. A high vote total would also be helpful in demonstrating the importance of this issue, even if it doesn't make it into the debate. Please do follow the link and vote for our question if you haven't already.

You should also type "disabled" into the search feature of the Open Debate site and see the other disability-related questions that others have suggested. You can vote for as many as you want.

For what it's worth, here are the other issues I voted for:

This question roughly matches up with the top issue in the #CripTheVote Disability Issues Survey. Check out the results here.

Employment is obviously a huge issue, especially for disabled people.

At the moment, this question is within striking distance of actually making the top 30, and it would be interesting to see how Clinton and Trump would answer it.

This is not a familiar issue outside the disability community, but in many ways it's a perfect example of bad disability policy that absolutely doesn't have to be bad, and could easily be changed.

This question refers to another fairly specific issue, a bill in Congress aimed at improving home care and helping people get out of nursing homes nation-wide. It's an important initiative that I suspect will be the next big push forward for disability issues in Congress.

So, vote for the issues you care about, and if you want to pose a totally new question of your own, go ahead! On Sunday night we will see how our questions shape the next debate.

 

#CripTheVote Disability Issues Survey Update

#CripTheVote with logo featuring ballot box with 4 blue disability symbols on front

Now that the #CripTheVote Disability Issues Survey has passed the 400 responses mark, it's probably a good time to take another look at the results so far. The last time we looked, we had about 300 responses. It's notable that 100 more responses resulted in fairly little change overall ... with a few exceptions.

Question 1: Disability Policy Areas in priority order: (1 = top priority, 10 = lowest priority)

1. Health Care
2. Civil Rights / Discrimination
3. Accessibility
4. Employment (Employment and Accessibility traded spots)
5. Housing
6. Education
7. Long Term Care / Personal Assistance
8. Benefits
9. Transportation
10. Assistive Technology

Notes on Question 1:

Honestly, this first broad category ranking question is probably not that useful. The categories are so broad that they all seem equally important. However, the top three or four issues do seem to make sense as high priorities for the disability community. It's surprising that Long Term Care / Personal Assistance ranks as low as it does so far. Maybe that's because people don't immediately recognize what the term actually refers to. Also, Accessibility and Employment have swapped their 3rd and 4th place spots since last month, but remain close together

Question 2: Disability Policy Ideas: Respondents asked to choose 5 out of 15 specific ideas. (Percent of respondents who chose each one, in order of popularity, most to least)

1. Hire and appoint more disabled people to government and policy-making positions. 54.14%
2. Pass the Disability Integration Act to promote independent living instead of nursing homes. 49.62% (moved up from 4th place)
3. Require disability awareness training for law enforcement. 48.37%
4. Ban payment of subminimum wage. 47.37% (moved down from 2nd place)
5. Change Social Security to reduce or eliminate work disincentives. 45.11%
6. Defend Social Security and Medicaid / Medicare against political attacks. 44.36% (moved up from 7th place)
7. Strengthen enforcement of accessibility standards. 43.36% (moved down from 6th place)
8. Eliminate use of physical restraint and isolation in public schools. 34.34%
9. Eliminate the Social Security “marriage penalty.” 28.07% (moved up from 10th place)
10. Strengthen voting rights and accessibility. 23.31% (moved down from 9th place)
11. Strengthen the rights of parents with disabilities. 23.31%
12. Review and reform guardianship laws relating to people with disabilities. 16.54%
13. Increase federal share of Special Education costs. 16.29% (moved up from 14th place)
14. Ban or phase out sheltered workshops. 15.04% (moved down from 13th place)
15. Strengthen enforcement of “most integrated setting” regulations in Special Education. 14.54%

Notes on Question 2:

The 2nd and 4th most popular policy positions have both received attention over the last week from Hillary Clinton, and to some extent Bernie Sanders' campaigns. Clinton and Sanders have both come out against payment of subminimum wage, and today Clinton specifically declared her support for passing the Disability Integration Act (DIA). The DIA is pretty consistent with Sanders' general political views, but given how important and fragile access to home care is for so many disabled people, disabled voters are going to need more specifics from him on this issue especially.

In fact, all of the top issues on this list are ripe for any of the remaining Presidential candidates to embrace or at least address with specifics. The top six alone would make a very credible disability policy agenda. Yet, it's remarkable how few of these issues can be found on any of the candidates' websites or in any of their official speeches ... even when they do address disability issues directly. Maybe sharing the results of this survey can suggest ways that candidates can re-calibrate and update their appeal to disabled voters.

Question 3: What best describes your interest in disability?

56% I have a disability
21% I have a disability and disabled person(s) in my family
11% There is a disabled person(s) in my family
6% I work in the disability field
5% Just interested

Notes on Question 3:

The ratios here have remained pretty much the same throughout the life of the survey. It's still mostly disabled people, with a some decent additional representation from families and professionals. It's about what we hoped for.

Top Disability Issues

#CripTheVote with logo of a ballot box with 4 blue and white disability symbols on the front

Here is another look at preliminary results of the #CripTheVote Disability Issues Survey, with data updated for today, March 12, 2016. I’ll go through each question, show the chart of results, and add some notes to think about.

So far, the survey has 306 respondents. It will stay open until April 30, 2016, so if you haven’t voted yet, you still can, and I, along with my #CripTheVote partners Alice Wong and Gregg Beratan, will post updates as more votes come in.

Click here to go to the survey
Click here for a text-only version of the survey

It’s probably also important to note that this is not a scientific, professionally designed or administered survey, so the results are at least somewhat skewed towards disabled people already fairly tuned in to disability issues and advocacy … and of course, limited to people using the Internet.

Click here if you prefer to see the survey results in text-only format

We will continue to refer to these survey results in future #CripTheVote chats and events.

Question 1: Please rank the following disability policy areas in priority order, from 1 = highest priority, to 10 = lowest priority. You can only assign one unique priority number to each topic.

I’m not sure now how useful this question is. We wanted to divide the universe of disability issues into 10 broad categories and get some idea of which ones are most to least important. One thing to remember is that they all matter, even the ones with the lowest priority. And every category was ranked “most important” by someone.

One reason why Health Care and Civil Rights / Discrimination sit at the top of the priority list may be that both are factors that relate to all other disability issues, while the others are just a bit more specialized.

Question 2: The following area disability policy ideas that emerged out of the first two #CripTheVote Twitter chats. Please choose 5 out of the following 15 disability policy ideas you feel are most important.

For this question, we got more specific, asking respondents to choose just 5 out of 15 real or hypothetical ideas for policy change. Again, we aren’t suggesting that ideas with fewer votes are no good or unnecessary. The survey results simply suggest which specific initiatives we would most like to see candidates embrace … and ideas we think have a fair chance of being approved and implemented.

There are two big surprises for me in these results. First, I am surprised and impressed that hiring and appointing more disabled people to policy making positions got the most votes, and by a fairly large margin. One could argue that improvement in just this one measure can result in improvements to all areas of disability policy. Second, I am sort of astonished that getting rid of sub-minimum wage got so many votes, while getting rid of sheltered workshops got so few. Not that these are contradictory results, just that these two advocacy goals are usually talked about together. Does this reflect a true difference in priority, or rather some confusion over what each of the two issues mean.

Question 3: If you have any specific disability policy ideas you don't see on this survey, write them here!

We will do another post soon summarizing and discussing the over 100 unique comments and ideas respondents added.

Question 4: What best describes your interest in disability?

We wanted to make sure we could keep track of whose opinions we are seeing. What you see here is that a hefty majority of respondents have disabilities themselves, while we also have some perspective from families and professionals.

The best result of all is that these results suggest some meaningful and feasible directions that candidates could take in developing their own disability agendas. There’s nothing “official” about this survey, and several other disability organizations have their own agendas that are great and probably better researched than ours. But I think our survey offers some valuable insights and specifics, both for disabled voters to think about and candidates for office to embrace.

After our initial posting of the survey, we added a text-only version, thanks to some requests to make the survey more accessible. It’s a lesson we will act on going forward. And we welcome feedback of all kinds on this project. Please share any thoughts you have on the survey and its results. You can leave them in the comments section below.

Flirting With Unwellness

Photo of red pills being spilled onto a table, along with Scrabble tiles spelling "SICK"

Don't expect much blogging this week. I'm fighting off a winter cold / flu / bronchitis. I feel like I am operating at about half capacity, and doing what I can to avoid a worse, longer bout of whatever I've got. 

If I have energy and time left over from napping, I'll probably put it into my next podcast episode, which I had planned to put out on Friday, but may not be ready until Saturday or Sunday. 

If you want to read something, browse around some old stuff in the archives, go visit the new #CripTheVote Facebook Page,  or do the #CripTheVote Disability Issues Survey.

#CripTheVote Disability Issues Survey

Illustration of a row of check boxes with a pen marking one box

It’s not enough for candidates to mention disabled people. It doesn’t mean much when they say they support us. It’s an empty rant when we complain that we’re left out, until we say what we want. What, exactly, do we want candidates to do with disability issues?

What disability policy issues do you care about most?

What kinds of disability policy ideas do you want candidates to talk about and support?

If we could push just two or three high-priority disability issues into this year’s election dialog, what would they be?

Take the #CripTheVote Issues Survey, and help us zero in on the top issues we want to hear about from candidates for office.

It’s free, anonymous, and will stay open until the end of April.

Click here for the #CripTheVote Issues Survey

#CripTheVote Update

#CripTheVote - Our Voices, Our Vote - Americans with Disabiliities and Political Participation - Twitter Chats - March 9, 2016: Democratic Debate - March 10, 2016: Republican Debate - One-hour before each debate, TBA - Take our Disability Policy Survey: http://www.disabilitythinking.com/election-2016-cripthevote/

What’s next for #CripTheVote? Plenty.

1. Let’s try to get the next debate moderators to ask the candidates a disability policy question. Before the next Republican debate on Thursday, February 25, Tweet the moderators:

@wolfblitzer
@MariaCeleste
@DanaBashCNN
@hughhewitt
@CNN

For example:

Ask the candidates: What would you do to reduce the massive rate of unemployment among disabled Americans? #CripTheVote

Ask the candidates: 15.6 million disabled Americans voted in 2012. How would your presidency address their concerns? #CripTheVote

Ask the candidates: What do you view as the top three issues facing disabled Americans today? #CripTheVote

By the way, it's great to boost these kinds of messages by retweeting, but please also send your own proposed questions to the moderators. We want them to see lots of disability question ideas from a very broad and diverse disability community, not just a handful of activists.

If we all Tweet together, we can be heard!

2. The next pre-debate #CripTheVot Twitter chats will be held on hour before the Democratic and Republican debates on March 9 and 10. Gear up for the debates with us, and share your ideas on disability policy issues and how to get the candidates more engaged with our issues.

3. In the meantime, take a few moments to complete our #CripTheVote Disability Issues Survey. Pick you top issues and priorities. We will discuss preliminary results on the 9th and 10th, and will keep the survey open until the end of April. Our hope is to use the results to push candidates at all levels to take notice of the issues we care about most.

Click here to to complete the survey. It’s free and completely anonymous.