I wonder if there’s another website like How to Get On on the web. I highly doubt it.
One of the many striking images on How To Get On. (Art by Olivia Colleen Smith)
Sleepy Girl’s How to Get On, a website devoted to “How to Have a Great Disabled Life” is one of the most sheerly valuable sites I’ve ever come across.
Sleepy Girl has an unusual and much needed talent: she loves diving deep into federal and state bureaucracies and coming out the other end with clear, easy-to-understand guides for the rest of us.
If there’s some sort of aid program or innovative way to help people with ME/CFS, FM, POTS, etc. manage financially or just manage, she’s going to find it.
Disability
Getting disability is only part of her immense site but the Disability section provides a window into just how complete and comprehensive this site is. The Disability section is nicely organized into 4 parts:
- The Basics.
- Improve Your Chances.
- What in the World is Going On? (Navigating SS Disability).
- What else can I apply for?
Each section contains numerous subsections. The Basics section, for instance, contains 9 subsections. one of which provides a long list of tips on how to fill out the crucial and daunting “Adult Function / Activities of Daily Living Report (SSA-3373-BK) required for disability.
The Improve Your Chances section has a section on “Getting Great Documentation” (getting that right is critical), which itself has many sections including:
- 21 Sample Doctor Letters for Disability – doctors’ letters for disability which worked, plus standard letters from Dr. Lapp and Dr. Rowe.
- How to Get the Medical Tests You Need (for a variety of conditions).
- How to Get Your Doctor to Fill out the Disability Paperwork.
There’s the immensely important:
- How Talking to Your Doctor Can Help (or hurt) Your Disability Case which includes the crucial advice to read your medical records and how to get your doctor to help your case with his/her notes.
Plus, SleepyGirl provides dozens (yes, dozens!) of disability success stories to keep you inspired on the sometimes arduous and treacherous path to disability.
- Dandelion Switches Doctors – It was the smartest decision I ever made in my life. If I had stayed with that doctor, I never would have gotten approved. I’m certain of it.
- Sweet Pea Gets Disability in 4 Months (without a lawyer!) – Don’t assume that our doctors are knowledgeable about Social Security and know what to do. We need to be our own advocates.
- Jasmine Wins Her Case Despite “Normal” Test Results – Like many people with Chronic Fatigue Syndrome, nearly all of my tests and blood work came back normal, and I could not afford any fancy testing.
- Buttercup Makes the Best Disability Application Ever Seen – My mom was right: you have to do everything yourself.
Housing, Caregivers, etc.
The Sleepy Girl Affordable Housing Survival Guide contains dozens of sections. The How to find a Caregiver or Home Aide, which itself many sections, including contains six sections on “How to Find a Great Aide”. (Did you know your spouse can sometimes qualify?)
How to Be Poor In America
My favorite section, though, is “How to Be Poor in America“. Check out a smattering of the pages in this section:
- How to Get Free Transportation to Your Doctor.
- How to Get Free Medical Travel.
- How to Get a Disability Parking Placard.
- How to Find Help with Car Expenses.
- How to Go to the Dentist When You Can’t Afford to Go to the Dentist.
- How to Get Free or Cheap Lab Tests.
- How to Pay for Medical Equipment (like a Wheelchair) Without Insurance.
- Programs that offer assistance with vet bills.
- Good News! $10 Internet! For Real!
Where else can you find a “How to Be Broke and Medicated” section? (It contains 10 ways to get discounts on drugs, ways to escape co-pays, deductibles and premiums, and success stories from people who got meds real cheap and more.) Check out one person who was able to cut her medical bills by 80%.
Then, there’s Jane’s story. Jane is completely disabled and poor (income = $10,000 a year), yet she’s not living in some trashy, run-down care facility. By using different programs to help out, she lives in an apartment with a full-time live-in aid. She’s found a way to get assistance with doctors, drugs, supplements, equipment, food, heating, internet, etc. It’s all out there. Find out how she did it here.
Conclusion
Art by Robin Mead
It would take hours to go through this immense and beautifully done site. (The site is adorned with striking paintings by Robin Mead, Elizabeth D’Angelo and others.)
Devoted to finding any way possible to get people with ME/CFS/FM and similar diseases help, How To Get On is a unique treasure – definitely something to give thanks for this Thanksgiving day.
Thank you, Cort!
Thankful for u, your team, your page and all your postings especially this one!??
Happy Thanksgiving to you
and yours!
Happy Thanksgivings to All!
Thanks Lora! I hope everyone had a good thanksgiving.
Thank you so very much for this invaluable information- I agree the success stories are uplifting in a time that is scary in America for the poor, the ill and disenfranchised. Hope you had a nice thanksgiving and so grateful for this.
I second Lora’s thanks, for all you do all year long.
Thanks!
What an uplifting site – I love the colours and Sleepy Girls whole approach to this territory.
I was on the lone parent payment until it was decided to ‘activate’ us!
Stress levels rocketed – I felt like a wild animal hearing the hunting dogs closing in on me. Fairly sure it made me worse over the last few years…
I didn’t even attempt to apply for disability as the first thing they would have done would be to give me a form to fill in and take to my doctor – who thinks I’m a depressed and overly anxious middle aged woman…
I just didn’t have the energy/stamina to deal with all of that – too overwhelming to even think about.
So I now work part time as a caregiver – hourly visits and a bit of a break driving to the next person. I really enjoy it most of the time but it’s just about all I can do. The house is a bit of a tip etc
I do receive help with rent and my son and I have Medical cards, which allow us free doctors visits, medications are €2 each for most things, two free dentist visits per year and eye tests/glasses. Hospital clinics are also free.
If the profile of ME/CFS is raised up a bit in the medical profession, I might see if I can apply for assistance as a back up.
I felt totally demoralised applying for benefits but I had to get over that to survive. Sleepy Girls stunning site cheers me up ?
One of my favorite parts of the site are the success stories – and there are lots of them. Really uplifting stuff – stories to give us comfort when the “the hunting dogs” feel like they are closing in and all looks dark. 🙂
Lily is my hero. I’m so proud to call her my friend.
What an amazing site! It’s humbling how much information has been gathered there by someone coping with a terrible illness herself. The clear bright colors of the art are also inspiring. I’m giving thanks that so many of us with ME/CFS are mobilizing online and sharing stories, advice, support.
And I also give thanks to Cort, whose sites (PR and now HR) have been places I’ve turned to for help so many times over the years. Thanks, Cort, for your sustained dedication to making the world a better place for us all!
Thanks Troon. How To Get On is a truly amazing site! I was blown away by how comprehensive it is…I don’t know how Lily or Sleepy Girl does it. Figuring out that stuff can be mind-numbing but Lily apparently thrives in that arena – and in creating easy to understand guides to all sorts of options for people with ME/CFS/FM etc.
Plus over time it’s turned into a community site with lots of people providing their experiences. How nice it is to have all the inspiring art as well 🙂
I read this blog last night, clicked through to some of the “helpful”
How To Get On articles, and presto, this morning I got a voicemail from a company that contracts with the Social Security Administration for the sheer purpose of getting SSDI recipients back to work!!!
Who is this woman with her cute kitty pics?
She TRACKED me down using my IP address, likely through the SSDI database for my state, and left a detailed message explaining how if I use this program I won’t lose my benefits or Medicare. OR BE SUBJECT TO A REVIEW OF MY SSDI!
That sure feels like a threat to me.
I’ve NEVER received a call like this before.
Coincidence it is NOT.
I’m sitting here with a Google engineer who just walked me through exactly how this type of tracking works. It’s pretty shocking. And pretty disgusting.
I’m not going to call the contractor, since I’m too sick to work and don’t anticipate that changing any time soon.
But if I ignore this call will I be *targeted* for an SSDI review?
Cort, can you explain this?
I’ve had the same type of call explaining the program in which SSDI recipients may do some paid work without losing benefits. I’ve also received literature with the same information mailed to me in the past.
I have never visited the website Cort mentioned. I thought it important to mention this because it may or may not be a coincidence that you received the call after looking at the website. I would hate to think of your holiday season be tainted with anxiety over this! In my own experience, I think I received maybe two or three more mailings last year, which I threw in the trash. I haven’t heard anymore from SSA about it in 2019.
Happy Thanksgiving, Cort, And thanks for all you do! Blessings to you and all the many readers of this important site.
Editing to be more complete: my call and literature also stated (as your recorded message did) that if I used the work program, I would not lose my benefit or Medicare or be subject to review of SSDI. I didn’t use the program. I did come up for review. Passed review.
I don’t understand. Are you suggesting that someone with How to Get On gave your IP address to a private company associated with the Social Security? Or something else?
Since How to Get On is devoted to finding ways for people with ME/CFS/FM etc to take advantage of federal, state and other programs, (not the other way around) I find that really hard to believe.
I get how disturbing this must be but I find it hard to believe a) that anyone was working on Thanksgiving when you visited the site, or that your data could be so quickly entered into a system and then have someone call you so rapidly. I think it must be an unfortunate coincidence.
That said I’m afraid I have no idea what to do with it. If, though, the goal was to get you to work a bit without losing your benefits maybe its fairly benign (???)
To clarify, she herself didn’t call me. A government “contractor” called me.
Sickening.
I also got a call earlier this week from a contractor for the SSA with the same offer of assistance to return to work IF I am able and interested in trying to return to work. I have not visited the “How To Get On” site, at least not in the last six months, and the message from the SSA contractor was completely non-threatening.
I am floored by how beautiful and thoughtful this article. Cort, I cannot thank you enough for your generous spirit and heart in everything you do.
Diana Nelson, and Mark C, thanks for responding above. Hopefully, that clears that up.
???
That makes two of us floored – me – by your website 🙂 Thanks!