I spend my days listening. Listening to the most desperate, most disadvantaged, most exploited, most helpless citizens in our state. Persons with disabilities, in short. I take calls from all over the state, from those with disabilities, family members, friends, neighbors, caregivers…just about anyone who somehow rubs up against the “world” of those with disabilities.
It’s depressing work, yes. Often deeply so. The situations I’m presented with are incredibly hard, emotional, painful…think “last-ditch and beyond.” Unfortunately, there are times when I can do nothing substantive. It’s hard not to become bitter or disillusioned about our society as a whole when all you hear are the misery, the pain and the frustration almost universally presented to me every day. There’s not much good news in my day to day working life. Pretty much never any victories or successes, at least that I hear about.
And my role, you ask? My title is “Disability Specialist.” I’m one of only three people in the whole country, who, by job description, is tasked to listen and advise. The listening is the harder of the two. Hearing the stories I hear would take almost anyone to a new emotional low damn near every day. Exactly how I get through the days without crying all night is not something I understand. Somehow, I just do, I guess. Although, some days are worse than others.
In this state it truly sucks to be disabled, infirm or elderly. There’s no state level disability, no Medicaid for you unless you’re drawing Social Security Disability (SSDI) or the OTHER benefit, SSI, or Supplemental Security Income. For most, it is NOT “supplemental.” It’s all they get. And it ain’t “security,” for sure. It barely qualifies as “income,” get right down to it. I must hear the term “fixed income” a dozen times a day sometimes.
The callers come in various flavors. Those new to the game are disillusioned, confused, unsure. Those who’ve been in it a while are usually very angry, often militantly so. Those in between range from passive and resigned to defeated and desperate. Some have “entitlement fever.” A very real phenomenon, believe me. I can usually tell what “group” they’re in within a minute of answering my phone.
Most, I willingly help. Some, I tell the facts of life in the REAL world. The smallest segment includes those I’d like to seriously smack and tell them, “The state does NOT owe you a living! Deal with it!” Some have never worked a day in their lives, mostly because they CAN’T, no matter how much they might want to. Others have worked all their lives, have hit hard times, and are disoriented, confused and unable to grasp what’s happening. And, of course, there’s the group that thinks the state owes them everything from a warm bed, to food in their belly to transportation to the market…or the strip club.
Virtually every human services agency in the state knows our phone number. If they don’t want to take the time, they routinely send the caller to us, often blind transferred and the caller hasn’t a clue how or why they ended up talking to me. Often, they’re told before being transferred that we can fix it all, make it better, take away the pain, give them money, fix their house, give their landlord hell, clean up their kitchen, find them a job, pick them up some apples on the way home! So, my first job is usually disappointing them by telling them the truth. “No state agency is going to do that for you.” Not what they want to hear. “But, the last person I spoke to said you could!” When I ask who that person was, they have no idea. When I tell them again that it ain’t gonna happen, they STILL claim they were told I could put Humpty Dumpty back together again. Hope is hard to kill sometimes, and it’s something I really dislike doing.
And, I have to do it way too often. To nice people in horrible situations, awful circumstances not of their own making, more often than not. Happenstance shows no favoritism, knows no distinctions and is about as random as it gets. One day they’re fine. Employed, whole, thriving, or at least surviving. The next day, they’re disabled, permanently injured, unable to use a limb or two, blinded, deafened, paralyzed, brain damaged, deathly ill or missing pieces and parts.
The other state agencies…that’d be the ones who are SUPPOSED to help these folks, send callers to me. I often wonder why. I think I’ve at least partially figured it out. They are burned out, themselves depressed and distraught because THEIR agency won’t or can’t help. The money just isn’t there. And, whose fault is that? The agencies say it’s the Legislature. The Legislature says it’s the lack of Federal money. The non-profits say that donations have dried up. The for-profits won’t touch you unless YOU can pay, regardless of Medicare, Medicaid, Social Security, Worker’s Comp or Unemployment. A fistful of fingers all pointing to other agencies, other programs…even other states.
For example, in my state, if you sustain a “traumatic brain injury,” or a TBI, then you are sent OUT OF STATE once you are stabilized! Why? So that state level Medicaid won’t have to pay for your treatment, rehabilitation, long term care or benefits. Or this one…Medicaid won’t pay for “out-patient” procedures that would prevent hospitalizations. Nope. You must be admitted, THEN they’ll pay. Couple thousand bucks a day to keep you there, which Medicaid does not pay in full. The rest is up to you! And believe me, Medicaid often pays a SMALL percentage of the bill, but the hospital can charge whatever they want, leaving you and yours to go into huge debt, collection agencies calling day and night, unlawful harrassment and all the rest. All because what they needed originally, a relatively simple out-patient thing, isn’t covered by Medicaid.
The list goes on…and on, and on. There are dozens of instances or situations I could cite where people are just flat given misleading information by the very agency tasked, BY LAW, to assist them. They’re told they don’t qualify when they clearly do. They’re told to call back later. The numbers they’re given don’t answer or if they do, it’s a voice mail system, from which calls are never returned. One agency in particular, who shall remain unnamed, ROUTINELY sends callers to me for cases they are CLEARLY and SPECIFICALLY tasked to handle. This agency only handles five different diagnoses, and yet they get fully 80% of the health care dollars given by the Legislature. And then, they avoid caring for eligible recipients and instead, give them MY phone number.
At that point, despite my anger, I have no choice but to refer them back as this is the ONLY state agency that handles developmental disabilities, autism spectrum disorders, spina bifida, cerebral palsey and Prader-Willey Syndrome. The ONLY agency, mind you. Any other agency will slam the door in their face as soon as they discover the diagnosis.
So, I educate the consumer first. Advise them that THIS agency or THAT agency IS the RIGHT agency, despite what they’ve been told. I give them the state headquarters phone number and the name of the big cheese. I give them the consumer complaint number for investigation of offices and agencies that don’t do what they’re supposed to do. Sometimes, we get involved, too. WE call, ask some very pointed and difficult questions. “Can you identify who is giving this erroneous information?” “Is it your policy to turn away qualified applicants for services?” “Do you realize you are violating the law by refusing to serve these clients?” And, my favorite…”I intend to officially notify the Attorney General’s Office of this violaton. Are YOU the point of contact for the investigation?”
There are more subtle ways employed, too. A case comes to mind involving interpreter services for the deaf. A state agency sent a letter to a deaf client, telling them they would have to provide their own interpreter for an interview on an issue. State law dictates the AGENCY is responsible for providing interpretive services. Interestingly, the letter sent to the individual was unsigned, no signature block or name, no email address, no phone number, no identification of ANY kind regarding WHO was making this illegal demand of the consumer. Very deliberate, very knowingly illegal, and totally immoral.
A couple of phone calls to the Secretary for this agency resulted in written and verbal apologies being issued, interpretive services WERE provided and every office of this very large Agency state-wide was formally notified to abide by the law!
Bottom line, head’s rolled, people were fired and the policy of deception was spotlighted sufficiently to prevent any OTHER office from trying the same tactic. Yes, interpreters are expensive, but it is incumbent on the STATE to provide this support and service, regardless of budget constraints.
That’s definitely not the preferred solution, but sometimes it’s all that can be done. Luckily, it doesn’t often come to that. It’s a very small percentage of people, usually in management positions, who are trying to shave their budget, and the workers end up between a rock and a hard place.
You may have noticed I’ve not mentioned the state I’m in. Let’s just say you can’t go any further South from “my” state. Not without getting your feet wet. Or, right now, covered in oil.
As we Boomers age, more and more of us are going to become incapicated to the point of being a “person with disabilities.” It’s almost inevitable. Personally, I’m scared to death! In many ways, I’d prefer to either move to another country or just flat check out, rather than deal with Medicare, Medicaid, Social Security and all the other agencies that are seemingly dedicated to making life absolutely miserable for the retired, the elderly, the disabled, the infirm and the medically needy.
And THAT, fellow Boomers, is how it is.