By Cheryl Green, Filmmaker and Blogger at Who Am I To Stop It
If you have had a brain injury or you know someone with a brain injury, you’ve got some insider information when it comes to filling out multi-page forms and applications: it’s really hard to keep track of all the pages and pieces! If it’s an application for Social Security benefits, then there are a lot of pages and pieces on your plate. And every single one is critical.
Social Security benefits applications are lengthy. A lot of people applying for benefits feel stress directly from their disability or because their finances are strained. Stress can make anyone forgetful or sloppy. If you are already forgetful, disorganized or have trouble keeping track of steps, you need some good strategies before your start an important process like this.
- Make your own master list or chart to keep track of everything you need to write down, collect and send to Social Security Administration (SSA). Note the due dates for sending those things in. Check things off when you have sent them in! That way you won’t wonder if you really did send them or only dreamed it.
- Keep all the letters from Social Security and your representative (such as a lawyer or other kind of representative) in a safe place. These are not the kind of papers you want to just stick in your regular piles. Store them carefully so you can find them quickly.
- Get someone to help you. It’s not cheating. You will answer all the questions from your own experience. The person helping you can check to make sure you answered every question. Take it from me, it is actually normal for us people with brain injuries to forget our own story. There is a lot to recall and put into the application and you need to be thorough.
- Read every bit of paperwork SSA sends you. I mean every bit. If you can’t read, can’t read well or are not able to pay attention and remember what you read, go back to step #3. Get someone to help you!
- ALWAYS flip over SSA letters and read the back. There is very helpful information there. That’s where they give instructions on how to appeal your case if you disagree with something SSA decided. You should appeal, not start a brand new application if you disagree with the decision. Appeals have deadlines, too. Put those dates on your master list or chart.
- Keep on top of all of those due dates. SSA has to be serious about their deadlines because the application process is complex and a lot of people apply. Don’t miss them. You don’t automatically get an extension for being forgetful, confused or feeling spacey, even if those are some main reasons why you might be applying!
- Recognize that the bigger and more complex a task is, the harder it is to keep track and finish it (or even start it). Break things down into manageable pieces and steps and complete each step.
- If it is difficult for you to keep control over your emotions, be aware that this process can bring up a lot of feelings for some people. You have to write about all the doctors and clinicians you have seen, the impairments you have and the daily challenges from your disability. Not everyone enjoys doing that.
- When your representative or doctor tells you something that you need for your benefits claim, get it in writing. For some people, audio recordings may be helpful. That way, if you forget the details, you still have a record.
- If you don’t know who can help you, check with a family member or close friend who knows you well. Also, the state Brain Injury Alliances and Associations often recommend lawyers and agencies who specialize in working with our population. Sometimes an Independent Living Center in your area can help out.
Because our disabilities often include cognitive, physical, emotional and sensory challenges, we sometimes have a harder time filling out long applications than it seems like we should. We require lots of patience and understanding, lots of repetition and, well, lots of repetition. So as you fill out your application, give yourself structure by setting out all the pieces and deadlines before you start. Review them as you go along so you don’t miss anything.
What I find important is that after a brain injury, your impairments do not make you a weak, needy or incomplete person. If you are too impaired to hold a full-time job right now, that may or may not be true in a couple years down the road for some people. Do what you need to do to take care of yourself and get or keep stable housing and supportive people around you. If you choose to apply for Social Security benefits, then keep in mind that if SSA determines you have a disability, that does not mean you are a less valuable person in the community.
Cheryl Green, MFA, MS integrates her degrees in performing arts and speech-language pathology to explore how story can be used to break down stigma and barriers through film, blogging and podcasting. After a traumatic brain injury in 2010, she began making films that combine personal narrative and self-advocacy to create dynamic, artistic tools for disability justice. She is on the board of Disability Art and Culture Project and served on the board of Brain-injury Information Referral and Resource Development (BIRRDsong). She volunteers with National Black Disability Coalition. Cheryl also blogs about disability in film and media at www.WhoAmIToStopIt.com and podcasts at www.BlogTalkRadio.com/brainreels.