Disability Attendent Care-caring for the disabled

I'm writing this blog post out of complete frustration and hopefully as a means of some-sort of cathartic release knowing all to well that those readers of this who will be most effected to want to do something about it will sadly be unable to offer any assistance.  Those whom have within their power to do something, I hope never read this for in all likelihood, it will be their desire to make things even more difficult for me than better.  For those of you who do not normally read my blogs, you will need a bit of personal background information I normally loathe to post in public forum, but in this particular circumstance I feel I must in order to clarify my need for writing this post.  To make a lengthy background as simple as possible, I am thirty seven years old now and in a wheelchair as a result of a medical condition called Spinal Muscular Atrophy which is a form of muscular dystrophy that impairs an individual's muscle strength to the point that one can not walk, stand, nor raise one's arms.  In other words, for personal care such as bathing, dressing and going to the bathroom, one in my circumstances requires assistance from another individual.

For most of my life, the assistance required for me to function in a relatively normal life has always been provided by both my parents.  They have always been there to help me in the mornings, provide for my basic needs until I was seated in my power wheelchair, at which point I was mobile and as independent as a typical person could be provided their were unable to walk.  I earned a college bachelors degree, graduated perhaps not at the top of my class, but not too far from it.  Went on to earn credits in computer programming as well.  All was going well... I had a good job, was earning a decent living... but a dark cloud loomed that I could see threatening my future.  Time.  My parents were  aging, and soon I would have to find other means of getting washed and dressed...simple basic functions that one simply must do to live.  

It is here, this simplest of problems that has confounded me, and now seems to be an insurmountable challenge.  As I wanted more independence after graduating college, I began to look into attendant care with the hope of living independently before I even began my first year at Loyola.  There is a problem in this however, and it is one that no one considers.  First of all, attendant care is not cheap.  Even if the attendant you are trusting with your life makes minimum wage, and I assure you they all do, the agency they work for charges a much higher fee.  After-all, they must hire, schedule, and train workers who often tend to move on quickly to better more fullfilling higher paying jobs.  They also must protect themselves from lawsuits as it is, by its nature, a risky industry caring for people who are physically incapable of caring for themselves.  If you don't hire through an agency, then it is completely up to you to find someone else to care for you in the event that person is sick or ill or simply forgets to show up.  So, suddenly you find that it cost more to pay for the attendant to come to dress you for work then you actually make working.  The cost varies, but typically the first hour of attendant care is around $55, slightly less for second hour, and much more on nights, weekends or holidays if you can get anyone at all.  You can't hire by the half hour, and so, in my circumstances, to get washed, dressed, and put in bed at the end of the day is approximately three hours every day.  If, by some good fortune, you are in a high paying field, the other problem is simply getting an attendant to match your schedule.  Whereas mom and dad had no problem waking at 4:30 in the morning to get me to work by eight, most attendants don't start work till after 9 unless you are very fortunate.  Naturally, clients who have been with agencies longer get more choice with their schedule than new clients.  So, unless your job has both flex time and pays a ridiculously high salary, one is left to try to find some government assistance.

No health insurance covers attendant care.  Not Medicare, not Medicaid, not Blue Cross and Blue Shield, not even the Platinum insurance that the wealthy purchase.  Going to the bathroom and getting dressed, being seated in a wheelchair are not considered a medical necessity. will die if you don't do those things eventually... and if you get sick enough the insurance will pay for your ambulance ride to the hospital... but when you get home, your on your own.  So... what about government programs for the disabled?  Every state touts their programs for the disabled...especially those that keep the disabled employed and off of social security or disability.  Unfortunately, while these programs will think nothing of writing huge checks to make sure someone who is an alcoholic can get a college education, they will not pay for attendant care.  Attendant care it seems is not considered 'work related'.   I struggle to imagine a workplace allowing an employee to work for them naked sitting in their own poop... but it is not considered relevant to employment.  Oh, and alcoholics by the way are considered to be disabled, as are drug addicts and anyone with carpel tunnel syndrome.  So, most of the disability funds go to them instead of things like...oh I don't know...wheelchairs and ramps.

So what else is there to do?  The only programs remaining are for those individuals who are in poverty.  If you have absolutely no money, no savings, no income, no assets (that includes the house, car, TV and radio you have) there are precisely two programs available in the state of Maryland, and I suspect in most states there are none.  The department of social services through the department of aging will help pay for an attendant at their whim (presumably based on need) when they have a budget to do so assuming the individual has less then twenty thousand in assets.  Thus budget varies year to year, and at most, it will pay for an attendant to come a couple days a week.  So...what are you suppose to do the other one to six days a week they don't cover an attendant?  Well...according to them, I can call 911 and go to the hospital at which point they will send me to a nursing home along side dementia undoubtedly featured in some sixty minutes episode.  This program is really nothing more than something put in place for senior citizens who needed someone to come and do laundry once a week and make sure grandma wasn't sticking her cat in the microwave.  This is the program I am now on, and they just cut back my services from five days a week to four due to budget cuts.  The second, and mind you, only other program is called The Living at Home Waiver Program.

The Living at Home Waiver Program is this vastly under funded program whose purpose was not to help the disabled so much as to try to reduce how much the states had to pay through Medicare for nursing home care for senior citizens.  Someone did some math and figured out that it is cheaper to keep grandma at home than pay for her to go to a nursing home.  The program's use for people my age with disabilities never factored into the development of this program which was created some time in the late 1980s or early 1990s.  As the program is meant to save the state money, this means they want to make sure that the individual applying for the program is absolutely penniless and therefore could no longer afford the nursing home for which the person was already in.  Unlike the program from the department of aging, this program will cover as much attendant care as the person needs to keep them out of a nursing home.  The rule for acceptance in the program is that the individual can not have more than two thousand dollars in assets total... not a house (but a place to live), not a vehicle, no stamp collections, no coins of value, no paintings by Monet or Van Gogh, valuable jewelry etc etc etc.  Of course, at the time this rule was written, two thousand dollars was a good deal more than it is today, but the provision, when it was written, did not take inflation into consideration... and it would require an act of congress to amend it.  Today, my disability check runs just a little shy of that amount.

So, in desperation, I guess it was about twenty years ago now, I applied for the Living at Home Waiver program that I thought I would never have to call upon.  Upon applying, I was told that the waiting list for acceptance into the program was long, and that the number of people needing to be in the program far exceeded its budget.  In other words, the only way to be bumped up on this list was for someone receiving this program to die... unless of course more money became available.  For years, I would check my number, and it never moved.  I worked for a time, did what I was suppose to, tried to gather a savings and worked hard.  One day it dawned on my however just how futile this was, for no matter how hard I worked, I was not going to earn enough money to be able to hire a caregiver when I needed one.  The long hours working, and the stresses of the job took a toll on my health.  When I lost my first job, I actually did seek a therapist to talk to about my concerns to no avail.  I tried to talk to my parents to try to plan for the future, but as this was a future without them in it, for a time when they could no longer care for me, it was not a discussion they wanted to have.  A lot has happened in twenty years.  Now, my dad can barely lift me.  My mother had a severe stroke, and she too is now in a wheelchair.  My oldest sister, who has the same condition I do recently had to resign her job as an art teacher due to a health issue.  As for me, I long ago did the math and realized that the health risk of continuing to work in a high stress job, and the difficulties my parents faced getting me to that job was futile if I was only going to have to bankrupt myself in time to get attendant care.

So, to speed my story up, about twenty years go by.  With the first major downturn in the economy sometime after 9-11, I decided to go on disability, and so I've been drawing down my savings since then.  But, I get tired of people asking me, what it is I do for a living? Why am I not applying for this job or that job?  What do you do all day?  Regardless of one's reason for being unemployed, there is always a sortof resentment or social attitude that such a person is either lazy, stupid, or scamming the system if they say they do not work.  People seem to qualify and quantify others by the job they do.  Unemployed is about the same social status as saying that you just got released from jail.  Since I am a fairly good artist, and while I know that if I go to a typical job, I loose my attendant care, I decide to start selling my art through a little online store I call DarkRubyMoon.  It doesn't earn enough to get me into trouble with the attendant care program I am currently in, and if anything I am loosing money to keep it running.  But at least I can proudly answer when someone ask me what I am doing and say I run my own business.  Once again, I can qualify who I am in a socially acceptable way, I am an artist, even though that designation still ranks along side trash collector and janitor in social ranking.

My grandmother who was now 100 had severe dementia.   My dad was now caring for her on top of caring for my mother and sister.  Through the department of aging, an attendant came five days a week and on a temporary basis, funding for the other days was paid for through a grant after it was discovered that several million dollars for the disabled had gone unspent.  That money had to be spent this fiscal year or else it would be gone, and so for once, that agency actually had some money to spend.  Those extra days however are numbered and short as I had already allotted my share for disability equipment I needed before the attendant care situation had become critical.   Even with this help, my dad is stretched to the limit of what he could handle.  Then, miraculously, I get word that my number had finally come to the top of the list for this Living at Home Waiver program.  Apparently, so many people like me had been on the list so long that they were being forced to review those on the waiting list. I thought at first that this was the answer to my problems.  At least I would be taken care of seven days a week.  Right around this time, I get a packet of forty pages of forms to fill out to be approved for the program.  The questions are invasive and detailed.  They want to know every thing I own, every penny I have.  By this time, my accounts met the criteria, but just barely.  Two thousand dollars is not very much.  We fill out the forms and send them in to meet the very short deadline, lest I get placed back on the bottom of a twenty year waiting list again.  A nurse or someone with the program comes out for a visit.  I think things went well and fill out more forms releasing more information.  Shortly after my grandmother's funeral, I get another letter from the department of this Living at Home Waiver that investigates the applicant's finances.

"In order for us to determine continued Medical Assistance eligibility for the above client, you must supply the following information by the requested due date."
"Account verification: checking statements 09/12, 08/12, 09/11, 09/10, 09/09, 09/08, 09/07 Verification of EE bonds."
"Identity: social security card, birth certificate and photo ID, medicare card."
"Please return this information by 09/30/2012 or the application for Medical Assistance may be denied or closed on 09/30/2012 per Maryland Regulation, COMAR"

I looked at the due date.  It was written 09/14/2012 and I had not received the letter in the mail until less than a week before all this information was due.  As it turned out, I had only just that prior week gone to the bank to try to cash out the bonds they wanted copies of to discover my license had expired and was no longer valid.  We rush that week to try to acquire all this information... bank statements all the way back to 2007... look for my social security card and birth certificate that was no longer in the safety deposit box... go to DMV on a crowded rainy day with tornado alerts in the area to renew my ID.  We get everything together and send it next day mail.  Try to get through on the phone to the person on this letter requesting all this information to no avail.  No returned calls.  My DarkRubyMoon store operates through CafePress... how was I suppose to give them documents related to this?  Was I going to be forced to shut down my store in order to meet the asset criteria and once again define myself as just being 'unemployed'?

So I call the financial requirements office which is called Division of Eligibility Waiver services or DEWS for short.  If your disabled, you soon become overwhelmed with acronyms.  Currently, I have a case worker in DDS, DAS, and formerly in DORS...along with probably a half dozen other ridiculous acronyms.  Each one has a case worker, each case worker over-worked and very kind and wanting to help, but each with their hands tied  and no resources.  Anyway, I call to ask if they got the forms.  Answering machine... please leave a message.  I leave my name and number and request some acknowledgment that the information was received.  No calls.  Leave another message.  No return calls.  Finally, another 'coordinator' for the program calls to setup an appointment.  He wants to visit me to fill out more forms.  Well... at least I think that if they are coming out to fill out more paperwork, then they must have gotten all the financial information and I am still on the path to being approved.  More forms to fill out.  Waivers and legal documents releasing even more information.  I think that is it... that the process must surely be over, and in the nick of time.  The Department of Aging who had been paying for my attendant care, due to some budget cutback had reduced my attendant care by one day a week.  The funding for the secondary program covering the remaining days is nearly over.  My sister is about to go in for surgery, and my dad, whose health is questionable, is already beyond his limits, often with only two hours of sleep a night.

Today, I get an email that was the catalyst for this long rant.   


I am not sure what the hell "Large sums of money" is as the account dwindled from a 2007 balance back shortly after employment of around twelve thousand dollars to the less than two required for acceptance in the program.  Money covering things like food, paying parents rent, specialized equipment for disability etc.  I am sure within those years there may have been questionable expenses that I don't care to share with the world, like loans that did not get repaid nor ever will to the overpriced computer I write this upon now.  Now every transaction I am going to have to account for in order to get help.  Did I buy a dirty movie in 2009?  How do I explain that loan I made or purchase I had forgotten?  The invasion of privacy is just too much.  It is bad enough that I have to bankrupt myself in order for random strangers (as nice as they may be) to come into my home to dress me when I am most vulnerable, but on top of it to go through the degradation of explaining every financial transaction made since 2007.

And, that is the situation I find myself in now.  Again, I want to re-iterate that I write this long rant not because I am seeking sympathy nor do I want donations nor is there anything anyone who reads this that can do anything to help.  If someone from one of these agencies reads this post, the only ones with any power to change things, it is their job to find within this post any reason for denying me of services.   Showing how the system works is a big no no, and they will try any means to make sure that they do not have to pay for any services at all.  As difficult as my situation is, the reason I suspect that the rules for such a program are so tough is that so many people even far worse off needing the assistance I seek, and therefore it is the job of the people running the program to ensure the little money available goes to those in most dire need even if it means creating a dire need amongst those rejected. Therefore, it is my hope that no one from any of these government agencies ever read or get whim that I have posted such a thing.  

Sending me donations or money or any such things would only make my situation far worse.  If I did seek donations, that would automatically push me above the two-thousand in assets I would need to get assistance, and unless someone is planning to give enough for me to hire a life-time of nurses aids, such a donation would be detrimental.   Sympathy, while appreciated on some level doesn't really help anyone.  I've never heard anyone ever say, my situation was improved by your sympathy.  If my paper somehow angers you enough that you want to get active in politics to create some changes, while I would commend you on your desire and wish you the best of luck, there are some things one should know about the political structure of our country that I am assure most are not aware.  Politicians, left or right, Republican or Democrat, regardless of whom is elected have almost no power to make any changes in our system.   I say this as someone who use to work in a government agency for the Governor's Office on Disabilities years ago.  Sadly, out of necessity, it has been this way since perhaps the time before the civil war as the government is a system, a machine, complex and compartmentalized with no one understanding anymore how the individual parts work or what they do.  Sure, politicians control still the purse strings, dividing the money tax payers give to those departments they want to see do more, and less money to those departments they want to see fail or dissolve completely.  They can either turn the engine on, rev it up, let it idle, or starve it of fuel, but as for the real mechanism, they have no more control of it than a monkey on a Ferris wheel.  Sure, politicians can make promises to fix things and make changes, and many are in fact well intentioned, but the truth is they have little power over the things they run.  Each department of government regardless of what it is for, albeit for disability services, programs or whatever it may be is run like a separate company or institution, each with systems and rules in place, each with their own small hierarchies overseen by other hierarchies within hierarchies.  These departments remain from politician to politician, and are controlled by directives set in place that often takes acts of state congress to alter.  The mechanism of politicians directly overseeing anything disappeared with the invention of the steam engine, long ago when one could still walk in and shake the governor's hand.  Established by laws politicians can't and often shouldn't mess with, they are in  themselves self-serving in that they try to remain employed and grow, and have little control over their own automated functions established under the very rules for which formed them.  Elected officials can merely give more money to these government organizations in the hope they will help more people, or starve them into destruction where they cease to help anyone.  How they function or use that money is often outside their direct control.

So, like most blogs, I write this to no one but myself, for no one but myself, not in the hope of changing things or altering them.  I write solely because I feel I must, even if the words are heard by no one but me.
Uploaded 10/28/2012
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