How to Have a Great, Disabled Life

HOW TO GET ON

A self-advocacy guide for anyone who is homebound or bedbound in the US. Special focus on folks with Myalgic Encephalomyelitis (sometimes called “Chronic Fatigue Syndrome”). If you are not lucky enough to have ME or CFS, you are still welcome to use this guide. Enjoy! 💛 💚 💝 🍭

DISABILITY GUIDES

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AFFORDABLE HOUSING GUIDES

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HOME CARE GUIDES

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FINANCIAL SURVIVAL GUIDES

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HOMEBOUND GUIDES

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HOW TO GET ON . . .

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HOW TO ESCAPE . . .

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IN THE TIME OF CORONAVIRUS

We’ve created some guides for everyone (not just disabled people):

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LIVE LIKE A SPOONIE

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49 thoughts on “How to Have a Great, Disabled Life”

  1. I don’t know who is running this website but your information is amazing. I haven’t found anything like this out there. Please keep it up. People who want to do something to help people in need should take you as a prime example.

    Like

  2. Who created this site? I want to thank you with every platitude I can imagine for this incredible effort. This is the most important resource I’ve ever found to help my two daughters with ME/CFS. I’m amazed at how quickly you provide uptodate info especially in the midst of this crisis. Heroic, magnificent, more appreciated than I can tell you.

    Liked by 1 person

  3. Whoever runs this website/guide deserves major kudos. This is by far the most helpful and competent resource for the disabled at a time when the concerns of the disabled seem to be largely neglected. Thank you.

    Liked by 1 person

  4. Currently, I’m at a women’s shelter in NYC. We’ve been moved to a hotel because of covid, but we’re still 2 to a room, and many women, including my roommate, don’t wear masks in the rooms. Our beds are 3 feet apart, it’s impossible to follow social distancing protocol this way.

    Yesterday my outside advocate told me he made some calls and found out I was approved for a Section 8 unit, which is amazing, especially in New York City, and I thank this site for giving me the confidence to continue to pursue it after being told no one in NYC was getting Section 8 anymore.

    Liked by 1 person

    1. Wow! Just wow! And congratulations! Now make sure you USE that Sec 8. (Is it a subsidized unit or a voucher?) Many people get the opportunity and lose it because they don’t follow through, can’t find help moving or paying move-in fees (there are programs to help with the fees), etc. Whatever you do, DO NOT lose this opportunity. It may be your GOLDEN TICKET to keep housing and never become homeless again. (From someone who has BTDT & watched others fall back through the cracks in the system.)

      Do you know HOW they were able to fast-track you into a Sec 8 unit? (I do homeless advocacy and am always trying to gather real-life stories of what programs and actions “work” and what doesn’t, to try to advise the funders in my area in how to make our system better.) You can contact me directly at nodo (dot) boho at gmail

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  5. it is 3am my mind is racing as usual lol and am trying to qualify for disability your site was the first one that had useful information broken down into a way which i could understand and trust me I will be refering back to this web page because right now my case is in the hands of my father who has hired me a lawyer i have never spoken to so i dont know what is going on

    Liked by 2 people

    1. Thank you for this lovely comment. We don’t accept any payment, but if you come across someone else who is disabled and in need someday, and you can share resources or help with them, that would be wonderful.

      Liked by 1 person

      1. Suggestions: Set up a nonprofit org. There are DIY books, even some NPOs that teach how to start & manage an NPO…you’re good at research, I know you could do it. You could set up a Patreon account or do some direct payment app on this site. The money could go to help some other disabled folks that have web, researching, writing, etc. skills to lift the burden on you, expand your “reach”, “advertise” your platforms to get this info to more people*, etc. There may be times when you need a break or health issues get in the way…having a little extra “cushion” might make it easier to get help keeping this going while you recuperate.

        * Share the info. Toot your own horn. Speaking as a former President of a large metropolitan Housing Authority region-wide Residents Council, there are tens of thousands of disabled and low income people who need and are looking for a resource like this. Also, their case workers, homeless advocates, “faith-based” (church/temple/mosque) homeless support groups, Tent Cities, etc. could use it to help the people they are trying to support. Not all Housing Authorities have Resident Councils, but the ones that do exist would surely welcome knowing about your websites. (Quarterly Press Releases?)

        There’s also newspapers affiliated with Housing Authorities, or NPOs that publish & distribute newspapers serving low-income housing residents. I would love to see you write some simplified articles (maybe just lifted from your website) and sent out to all the “street papers” (“syndicate” it if you can). Here’s a start https://www.realchangenews.org/ (While you’re there, sample some of my friend’s columns: “Adventures in Irony”. He and his wife have been writing for years, both disabled and absolutely brilliant, and very funny writers.) Include a little promo about you with your URLs. (Info + advertising!) You might even pick up a little money for it as a paid writer.

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  6. I cannot thank you enough for making the lists of sample housing letters.
    It’s hard to put this stuff into words when you have no prior knowledge. I’m sure you know that, otherwise this list wouldn’t have even been made!
    Thank you. 💓

    Liked by 1 person

  7. I have problems with my housing coordinator with the same issues there have been several errors made on my rent calculations through the years by the same person ,I’ve literally have had to ask for a meeting with a supervisor present to get my rent calculations corrected .Every year it becomes a extremely stressful time for me having to even ask any questions.

    I find not only solice from your publications on section 8 housing laws and example letters ect. but I realize I have the right to be heard without fear of loosing my housing by simply stating the truth.
    Thank you so much.

    Liked by 1 person

    1. You’re not the only one! I Kudos to you for checking your rent calculations and going over her head to get justice.

      I had a Leasing Assistant Manager who did the recertifications and insisted she had 18 yrs with the Housing Authority and “got training regularly” insist on unneeded documents, etc. holding up my recert. The second year she did it, they told me I’d be doing my recert with someone else. We went into a private side room & I met an experienced, smart Manager from another building. I asked “Are you taking over the recerts…or are you here just for me ?” She tried to hide a wry grin and confirmed, “Just for you.”

      As soon as she starting turning the pages of my recert packet and I explained the clash I’d been having, she saw that I was not a “problem tenant”, just a smart, informed one. She immediately said, “We don’t need that…the HUD regulations say…” I was so relieved…I told the Manager, “Tell HER that!” I’d been citing those same HUD regs and trying to reason with the other gal to no avail–she wasn’t understanding them or logical enough to see that she was asking for redundant documents, that would be a lot of extra work to get. I don’t know how many other residents were put through that by her and other incompetent staff, or even if she was set straight and stopped doing it.

      Teach your fellow residents! If they’re messing up with YOUR rent, chances are they’re doing it to others.

      Like

  8. I have been reading your articles since I first found out that I would be more than likely homeless in October. I know it may sound repetitive but seriously thank you for writing the articles and putting the information out there because before finding your website/ articles I was feeling very devastated and hopeless and I just didn’t know what to do. It seemed like there was no way to get more information but reading them has given me some hope and definitely has provide me with more information than anywhere else. I hope you keep writing the articles because You are making an impact on people’s lives especially mine. So from the bottom of my heart thank you and I appreciate what you are doing.

    Liked by 1 person

    1. DO NOT give up and do not rely on the social service or homeless system to get you out of your situation. They may, but you cannot count on it. Even you get help, double and triple-check what they do as the ball can get dropped, communication crossed, deadlines missed, and YOU will be the one paying the price! Become an expert in “the system”–housing, benefits, whatever it is you need–so you will know the proper procedures, agencies, programs, qualifications to get help, etc. You may quickly find you know more than the overworked, undertrained, underpaid case workers who are supposed to be helping you.

      If you can, double up to share rent, rent a room, get creative…avoid homelessness if you possibly can. And DON’T get evicted. Don’t let them FILE for eviction. Get out voluntarily, throw your stuff into storage if you can. Eviction (even just an initial filing) can keep you from renting regular housing for YEARS! If you become homeless, try to find a 24/7 shelter or Tent City. Night-only shelters will wear you out, keep you sleep-deprived and schlepping your stuff with you all the time. Your physical and mental health will suffer. Make it your mission to work every day on income (getting benefits, working temp, selling your replaceable stuff, whatever) and housing (get on ALL the subsidized housing lists–nonprofit-run, public housing, Sec 8 if available, etc.). If you don’t, homelessness will quickly become quicksand pulling you in and keeping you there, while the days turn to months to years. (I’ve seen it happen….) Please don’t let that happen to you.

      Good luck! My thoughts are with you.

      Like

  9. God is indeed good! Just by chance and entering the correct wording on google this page came up. I have saved this blog in my bookmark. I myself am going through the process, through my employer of trying to get on LTD. My STD just stopped and now I am waiting patiently for the review for my case. I am blessed to have this through my employer, as most companies don’t offer LTD. On Oct-2019 I was rushed to the hospital and found out my lungs collapsed, and was then given my painful diagnosis of LAM. It is a very rare lung disease that effects mostly women. There is no cure and there is only a few treatments, one being a lung transplant. I am alive so I am blessed! The information on this blog is so helpful during this time. It gives so much information. Thank you for doing this and I thank God for the technology to be able to read this. I still have so much to read but wanted to say thanks! 🙂

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  10. I just want to say thank you. I got my reasonable accommodation approved because of this site. It helped me a lot, people in my family wouldn’t help me. I did exactly what was told on the website that was include for reasonable accommodation for kids with disabilities. thanks for creating this. it’s a blessing.

    Liked by 1 person

  11. This site has just been so inspiring and overall, super helpful. I just wanted to thank you! It has such a kind tone and is simply informative, which is really nice when you are going through the stress of the SSDI application process. Thank you!

    Liked by 1 person

  12. This website is a GREAT RESOURCE!!!
    It is my go to place for everything disability. If you or someone ya care about is thinking about applying for Disability, please go wander around and read the numerous articles.

    Liked by 1 person

  13. My main resource for getting my student loans discharged and so many other things related to my illness has been “How to get on”. Invaluable

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  14. Hi there – Hope that you are hanging in there!  This is such a great resource, I direct people here when ever possible. Given my claim took 6 years & was overturned by the Federal Court, my attorney is making a substantial amount of $, which he deserves (approx 10x what the usual fee if it just goes to the ALJ level).  I am also asking him this – will get back to you – but wondering if you have ever heard of SS reimbursing me for this fee since it was such a prolonged mess bc of them.  I know that I get an extra $6,000 b/c of this delay, maybe that is in place of being given the opportunity to go after the big fees.  A most sincere thanks & all the best!

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    1. What I have always read (and experienced) is this:

      – lawyers who work “on contingency” don’t get anything unless you win, then they get paid from the “lump-sum” of your back benefits.
      – they can collect 25% (I think) UP TO a cap of $6000. I have never heard of SSA paying it or compensating YOU, but if you have this from a good source, perhaps it’s true.
      – if you have been on “welfare” (state “DSHS” benefits for people who can’t work) AND you end up on SSI, your DSHS/welfare provider can take back all the money they gave you during the time covered by your back benefits. If, however, you get SSDI, they won’t touch your money! (SSI is considered a sort of Federal welfare support for long-term/permanent disabled so it would be “double-dipping” if you got both. SSDI, on the other hand, is considered EARNED, and is treated like Social Security Retirement, with much better rules and protections.)
      – SSA fights most claims and drags it out. Many people give up or miss a deadline and have to start over. A six year old claim should net you a substantial sum, if DSHS isn’t taking a chunk and if your lawyers fees are capped.
      – Whatever you get will be given to you in chunks if you get SSI, but in one lump sum if you get SSDI. That money will be exempt from your benefit and housing calculations, but only for one year. After that, it is considered “Assets” and could disqualify you from Food Stamps, Medicaid, and make for a lot of extra paperwork if you’re in subsidized housing. People are often told to just spend it, which they are only too happy to do.

      My advice: keep it as your Emergency Fund, use it for things that will really change your life–a possible down payment on a home you can afford (mobile home or manufactured home, house in a cheaper area), etc. There are ways to do this…complicated (legal trust, trusted family members holding it for you) or simple (be creative cashier’s checks good for seven years, in a safe deposit box…for instance; buy something that doesn’t depreciate and can be “liquified” when you need the money). Consider this your personal lottery–this kind of money is not going to fall into our lap again. Use it wisely.

      Good luck!

      Like

  15. Has anyone applied for disability through the FEDERAL GOVERNMENT (FERS) and also through the SOCIAL SECURITY disability office? They have different legal standards. Thank you, KH

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  16. Love your artwork! I also followed your guide and after losing my 1st case, I reapplied and won using the advice. It was hard work, but worth it. Thank you.

    Liked by 1 person

  17. I just found your site today and it is an amazing wealth of information… Something I needed for years and never found when researching. I am trying to help my daughter with disabilities. Not sure where to submit a question… Thanks!

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  18. I wanted to thank you for your website, and posting on facebook as well. The images on your website are awesome. Color therapy! The resources are a Godsend.

    Liked by 1 person

  19. Hello,
    I’m a disability rights lawyer and just found your list. Many more people need to see it. Have you made any efforts to spread the word?
    Here are the types of organizations that could use it:
    — organizations that provide free legal help for people with disabilities
    –organizations that provide free lawyers for low-income people
    –Independent Living Centers
    –Public Libraries (and also public law libraries)
    –Fair Housing organizations
    –Colleges with Housing Offices that help students find/keep housing
    –nonprofits that help people with disabilities find housing
    –local governments that provide
    –colleges/universities that provide classes/clinics about disability rights
    –law schools that have disability rights classes or clinics
    –associations for tenant lawyers
    If haven’t tried spreading the word yet, I’d like to help you. I also suggest you place a sentence on your website home page that reads: “If you find these resources helpful, please spread the word to organizations in your community that help people with disabilities.”

    Finally, THANK YOU for the many hours it must have taken to compile your list — it’s fabulous!
    — Michele

    Liked by 1 person

  20. Thank you so much for creating this website! I’m helping my son apply for SSI and came upon this. You’ve answered all my questions and then some! And with beautiful art, and kind words. Thank you thank you thank you.
    Marian

    Liked by 1 person

  21. OMG I stumbled on this today and am blown away at the wealth of information you have provided. I am not, personally, disabled but encounter people who are daily. There are so many things in here that are useful. YOU ROCK!!!!!!

    Liked by 1 person

  22. Thank you to everyone here for all your hard work in putting this information together, It has been super helpful for me and others. I know what it takes to keep things like this up, and when you are ill, its even harder. You have blessed many and we are greatful.

    Like

  23. I’ve been reading your blogs over and over daily learning so much and thanks to you, just found out I got approved for SNAP after many failed attempts. There are a few benefits that I am attempting to now conquer as I am studying as much as I can from all of the posts, comments, etc on your wordpress.

    Like

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