MaineLonghorn, I have an important piece of advice for you regarding social security as you advocate for others in your path. My husband is on SS for a constellation of medical issues (not related to mental illness) that are complex. Each one is non-disabling, but the constellation creates the need for disability. He also had a private disability policy, which we were supposed to be paid from as well (another story). We received SS on the first attempt!!! We retained a lawyer for the private policy, and he was absolutely shocked that we received social security benefits from a single application because of the complexity of my husband’s case and the challenges of the system. They actually awarded it in SPITE of their own doctor’s recommendation that it was necessary (an incredible sham of an exam).
I credit one book for our success, and recommend it to everyone I know who will listen. The book is called Disability Workbook for Social Security Applicants by Douglas Smith. You can get it from Amazon or his website, but be sure you get the most recent edition as it is based on SS forms. Ours is the 8th - there may be a newer one by now.
These are the most important lessons that I learned: #1: Do NOT EVER do an internet based application (contrary to the advice from SSA). Use this book, fill out the painstaking forms included in the book (or if you are like me, turn them into Word Documents) and take them to the SS office. Sit there with the officer and let him type in the information you have provided. They block out an hour for these appts. If you have precompleted the seven expanded forms in this book, they can spend the hour simply transcribing without having to ask you questions. MUCH faster for them. We literally sat almost in silence, which was GREAT as he kept talking about how noone ever comes with all of the information he needs organized. He then attached copies of our worksheet forms, which are basically expanded versions of his SS forms. #2: Diagnosis only matters if it is one of the automatic qualifying diagnoses, such as Stage IV of some cancers. For everything else, functional abilities are all that matter. The more specific your descriptions of the functional limitations, the higher probability of getting coverage. We have yet to run into a doctor that knew this. Be very, very, specific about what you can and can not do on a daily basis. #3: There is no way that the vast majority of disabled folks could complete this task. One person, preferably someone who lives with them, needs to spend the 20 hours ish painstakingly filling out the forms about little things like whether they can read and act on the mail, who prepares meals, etc.
Hope this is helpful. It is shocking how many people I know who deserve SS, but can’t get it. The other lesson that I have learned is that with SS, the chances of success rise with appeals.
@shoot4moon, thanks for an excellent post. I’m going to print it out right now. We were fortunate and were approved on the second try (it would have been the first except for a mistake I made about stating my son’s 529 account was one of his assets - it was actually mine). I filled out the forms myself. I included all pertinent records and wrote long, detailed explanations of my son’s limitations. SS sent an appointment date with a psychologist, but they cancelled it at the last minute (well, actually they didn’t get word to me in time, so we figured that out when we got to the guy’s office and he wasn’t there). That scared me, but I guess they decided my documentation was enough, and they approved him.
I agree that most disabled people, including my son, would never be able to go through this process by themselves.
When I hear about SS fraud, I can’t figure out how people manage it, when it’s so hard for truly needy people to qualify!
My niece has still not been approved and it’s been 15 years with many exacerbation and 2 cancer diagnoses during that time.
Carolina Mom, that makes me really, really sad. I have heard stories like that along the way, and am shocked at how little our doctors know about the process. I was a one woman teaching tool, as even our super fantastic primary said "Oh - I doubt he will get it. His diagnosis isn’t in their book. When I explained that with the exception of a few diagnoses, it’s about functional abilities, he was an interested listener, and I could tell he was reevaluating several cases in his care. In our case, SS’s own doctor stated that he didn’t qualify, and they ended up approving it. (Doctor consult was 20 minutes in the office, 10 of which was with a nurse performing routine tests. We had a two paragraph letter that I had basically crafted on the table listing the eight diagnoses that preclude work. The doctor glanced at the letter, saw the words “quad rupture” and asked him to put his hands on his hips and lean backwards. For those of you not in medicine, the quad is the muscle in the front of your leg that allows you to lift your knee - nothing to do with your back or hips. He indicated that he was walking fine, although he did not take a step in his presence and had a substantial limp. He had never heard of the primary diagnosis, and dismissed it. It was a pretty sad commentary.
@shoot4moon What is terribly frustrating is I am in healthcare and have worked with both mentally and physically ill patients who are less disabled than my niece who receive substantial disability checks.
I was glad they DIDN"T end up evaluating my son in person, because at first glance he seems like he’s doing well. It’s not until he feels the least bit of stress that he decompensates. That happened last week, when he was at our house with all of my visiting family. The stimulation was too much for him and he started acting oddly. The doctor bumped up his meds temporarily and he was fine. I cannot imagine him being able to hold a job, though.
Thank you for sharing this. It is so moving. Your son is an amazing person and I learned a lot from his words. Sending best wishes for his continuing journey, and your family’s.
Thank you everyone on this thread. I am a social worker who started in the geriatric field. I recently (18 mos ago) started working with the mentally ill, my case load is primarly those diagnosed with schizoaffective disorder and bipolar conditions. Ages range from 21 to 60 or so. This thread is teaching me things I never learned in college a million years ago and so much of what I can use day to day now.
@MaineLonghorn your son writes extremely well and has a story to tell. I’m so glad he (and you) see the benefits of sharing his story. I personally am very grateful. I don’t know if its the right thing to say but I always tell me clients on a bad day “keep your chin up, see the sun shine, there’s so much good, keep on keeping on” (and call me if you need me!).
I commend you, and your son for so bravely sharing his story. It is hard for me to read. As the daughter of someone who had what I believe was schizoaffective disorder, after the passage of years looking back as now an adult, it provides a new frame of reference and insight.
It hit my mother much later in life. For most of her early adult life she was simply hyompanic but at some point, a switch flipped, in her late twenties/early thirties. Things were so different then and as a teen I tried to help her as she was diagnosed manic depressive and at the time, unipolar. She was medication averse and at the end of the day, beyond my ability to help. I spent much of my early adult life trying to fix others since I couldn’t fix my mom.
I commend you for helping your son to find the help he needs but most importantly, your son. For acknowledging he needed help. For being willing to accept that help and to adapt to his changing needs for continuous improvement. I have often felt, rightly or wrongly, that to an extent mental illness is like addiction. Both are a disease. And until that disease is identified and understood and a treatment plan put into place, the disease can win. But once one knows and accepts that it is a disease and a treatment plan must be put in place and adhered to, it becomes a decision. A decision to choose health or to let the disease win. It is not an easy choice. it needs support, patience, persistence and resilience. Backsliding is a constant threat. But it can be managed and it can improve. I am so thrilled for your son to see him choosing life, choosing health and winning the war.
Can’t delete comment. Don’t have good ways to express myself except that I am glad my taxpayer money helps support public programs and support.
What a cool and courageous dude you are.