Disability, and one's response to it, doesn't happen in a vacuum. There are many resources and individuals out there that can make the difference between unnecessary pain and worsening impairment on one hand, and better functional outcome with mitigation of needless suffering on the other. People who have lived it know much of this all too well, but I can give some places to start.
KOSABILITY REPRINT digs into our archives covering five years of previously published KosA diaries. This week, we thank Ralphdog for writing this diary that, two years after it was published (3/3/13), still gives useful advice.
We find that many diaries offer valuable information and insight new members may have missed and old members can revisit. For each reprinted diary, KosAbility tries to contact the original diarist for use permission and to ask if they wish to update information and participate in new comment discussions.
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Full disclosure: I (Ralphdog) have been a rural family physician for almost 30 years. Our area is economically very depressed, the community small, our hospital even smaller. The biggest employer in town went under years ago. It's a very different world from metropolitan or affluent suburban areas. Yet, even here, there is a surprising depth of resources available for individuals suffering a disability, whether temporary or long term.
I'll start with what I know best, of course. A caring primary care provider can be immensely helpful. Most of us are experienced in dealing with all aspects of illness/injury/disability, from treating the primary medical issues to dealing with functional limitations to contending with symptoms & side effects of both conditions and their treatments. Specialists often lack the training (or the interest) to manage the aggravating nuts 'n bolts issues of impairment, though there are some wonderful exceptions. Ideally everyone would have access to a physiatrist, or physical medicine specialist, who is expert in maximizing functional outcomes and dealing with impairment. But in our for-profit health care system physiatrists, much like geriatricians (physicians specializing in care of the elderly), are undervalued and underpaid. Because their reimbursement is so poor, and their work so labor-intensive, they generally must be subsidized by a larger institution, and this is precisely the kind of expense being squeezed out of existence by for-profit health care. Consequently because there are so few of them, they are grossly over-committed. There are several in my urban referral center, but they're all overworked and almost impossible to get an appointment with.
Next, and to my way of thinking even more important, is a good social worker. Many folks have the notion that social workers are quaint all-purpose go-gooders who mostly give hugs. Not so! The social worker I have the privilege of working with is my 'go-to' person on almost everything. She knows every program, every service, every facility and agency in the entire county, and many of them in neighboring counties. If a patient can't drive anymore (a huge problem in our rural area), she'll know how to get them to that specialist appointment 50 miles away. She knows who to call when my patient can't pay the utility bills or can't afford a critical prescription. She has the county Medicaid office on speed-dial. She knows all the county social service workers personally. She will frequently suggest to me programs or agencies (like, say, Catholic Charities or the Lion's Club) that I would never think of to get a patient needed eyeglasses or urgent transportation.
Next: Social Services. A tragic reality of America's threadbare for-profit health care system is this: disabled individuals almost invariably suffer downward socio-economic mobility. Become disabled, lose your paycheck, lose your mobility, lose your health insurance, then lose your house...it's simply inhuman, particularly when contrasted with (say) Canada or Europe. But there it is. So disability often means becoming acquainted with your county social services office. It's the go-to place for access to Medicaid application and other state and county level services. In many counties it's right next door to the Social Security (Federal) office, where you apply for SSI disability, which is the point of entry to Medicare for the permanently disabled. The folks working there try hard, but a grim reality is that every time a Republican legislator rants about cutting government 'waste', he means firing a few more clerical workers in the Social Security office, which makes processing times even longer. In our area it's now running over 4 months.
There are huge differences here from State to State. New York is very aggressive in linking disabled children to Medicare & Medicaid, both to make sure they get needed care and to leverage Federal resources. Other (generally redder) States do their best to make this very difficult, to hold down their own Medicaid costs, patients be damned.
Next up: medical equipment suppliers. This is a lot more important than you might think. My sole first-hand experience of disability was arthroscopic knee surgery. Crutches? Very helpful. Properly fitted crutches adjusted to exactly the right length? Priceless. Most communities have a range of suppliers ranging from the Evil Empire (cough-WalMart-cough) to chain pharmacies to local outlets. Guess who does a much better job? And who will track down that special knee brace you need? Probably not the local branch of a chain. In our area there's a stellar family-owned pharmacy that responded to the pressure of the chains by specializing in equipment and personal service. I can call them at 8 pm on a Saturday, and they will find my patient that obscure device in a matter of hours. Like I say, priceless.
Physical therapy: this is a big resource for all sorts of issues, from recovering from a knee replacement to dealing with chronic pain, to basic physical conditioning and exercise. One frustrating reality is that many insurers have vastly increased co-pays for PT visits to the point where patients simply can't afford to attend more than a handful of visits, regardless of need, leading to utterly unnecessary suffering and preventable disability down the road. Makes me crazy. One uncomfortable reality is that physical therapists and therapy departments vary widely in quality and skill. Some are just reading off the instruction sheet, while others are highly experienced and will pick up the phone to tell me what's wrong with my PT order and why the patient will do far better with another regimen. They are invariably correct.
Transportation. Huge issue. For the 'temporarily able', hopping in the car and heading to the grocery store is no big deal. But getting on a bus with a wheelchair? That's a lot tougher. And in rural areas like ours, there's no regular bus route. We do have small buses that will take folks to the grocery store or the doctor's office with a two day notice. But they don't run after 4 pm, and you have to be ready when they arrive. If that doesn't work, the Office for the Aging will often find a volunteer driver for such little trips.
Speaking of which...Gotta know the details of what's in your area. (Here's where the social worker is worth her weight in gold.) Our county has a very active and supportive Office for the Aging, which coordinates all kinds of services for older citizens. It provides counselors to walk people through their Medicare options. It gives presentations on stuff like avoiding phone scams and contractor fraud. The office includes Adult Protective Services, which helps address unsafe or abusive home situations. And the Office for the Aging sponsors a number of Senior Nutrition Centers that make sure seniors who are interested get a hot lunch (and some social engagement) 4 days a week. They interface with Meals on Wheels to deliver food to folks who are home-bound. My lovely wife is site coordinator for the county's busiest Senior Nutrition Center. They do great work.
Friends & family: it goes without saying that a colossal amount of un-reimbursed care and services end up being provided by family members and friends. Some states are starting to experiment with innovations like Medicaid reimbursement for some of that care, as it saves a boatload of money over the long haul by keeping folks out of (much more expensive) institutions.
Lastly (for now), you'll probably need an attorney at some point. You can generally do simple things like designating your health care proxy by yourself; it's very simple here in NY State. But as soon as you start getting into issues like home ownership and resources versus Medicaid eligibility, you'll need an attorney with some skill, experience, compassion and interest in dealing with such nettlesome problems. Once more your saintly social worker likely knows which attorneys are going to be helpful and which are best avoided.
I guess that's it for now. This is far from an exhaustive list, and the details vary from State to State. But there's often more services & resources available to you than you know.
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COMMENTS FROM ORIGINAL PUBLICATION (commenter's name in parenthesis)
(allergy woman) If you have any drug allergies, don't just rely on your physician to convey that to your pharmacist. If you can, talk directly to the pharmacist her/himself and double check when you pick up your prescription that the person who made up your prescription knew about your allergies. I had a sulfa drug derivative prescribed for me at one point, and only a lucky break from the pharmacist saved me from a life-threatening allergic reaction.
(Ralphdog) In the error prevention literature, it's called the 'Swiss cheese model'. Each step in a process has some potential for error. (Doc forgets what you're allergic to. Pharmacist is distracted and doesn't notice.) They're like holes in a piece of Swiss cheese. And each step in the process is like another slice of Swiss, stacked one on top of the next.
The goal of designing the safest possible process is to make sure that 1) the holes are as small as they can possibly be and 2) the holes in the various steps don't line up so that harm can reach the patient.
(DrLori) Anyone who's applying for SSD. Be honest. I am not implying anyone would lie to get disability benefits, quite the opposite, in fact. When we're facing disability, we're programmed to make light of our difficulties, to say, "yes I'm in chronic pain, but it really isn't that bad..." or "Well, if I get the chance to rest, yes I can walk four blocks...." Stiff upper lip, no self-pity, no whining and all that.
The system takes your self-effacement as an indication that you really don't need help. When you meet with the SS administrator, it helps if you can bring someone with you, someone who won't mind telling the admin that, really, you lie on the floor to ease the pain in your back about every hour or so, or you can't manage more than a block before your knee goes out. And you have to steel yourself to report your condition unflinchingly.
(emeraldmaiden) Absolutely. This is of vital importance for anyone who is applying for SSDI. I helped my sister with her application, and she got (and gave me) good advice: Don't self-efface. Own the pain, and express how it feels.
Don't just say "my _ hurts", specifically describe the loss of activities. "I can no walk up or down stairs unassisted." "I can't hook my bra strap behind my back without help." "When I wake up, my hands are swollen, stiff, painful, and I cannot begin to get dressed for X time." This is what we did on my sister's app and she did get approved the first time. My sister has rheumatoid arthritis, and went from nursing to clerical to SSDI in the period of about eighteen months because of its progression.
(chicating) I think I should put in my plug for Independent Living Centers again. Because it can help to talk to somebody who's been there, and if they're biased, it's probably more in your direction than saving an agency $$. [Editor's Note: This website has links to all the independent living centers and associations in the US and its territories.]
(askyron) If I may add to your list: people who've been there before you. Parent groups, support groups, and therapy groups all give you multiple resources that you could spend forever looking for. I remember after we went to our first pediatric neurologist and were horrified, we were told by other parents that nobody went to him, and we should go across the bay to the one there. The first of many good pieces of advice from other parents.