In line with current U.S. rumblings about our massively messed up health care system, here is my personal diatribe against insurance profiteering, and appeal for attention toward disability services. I don’t usually post negative stuff or rants, but we’re all angry and my story of disability resilience is part of the record submitted in support for a public option. Other Vision Losers may find comparable experiences and those not yet disabled may gain some insight about life becoming disabled in early retirement before Medicare in these dark ages of private insurance.
Note: there are many local geographic references, with some Prescott AZ Resources for Visually Impaired.
I have myopic macular degeneration, a lifelong progressive deterioration from birth or growth spurt causing elongated eyeballs and correctable near-sightedness until too much retinal atrophy. My last sliver of good vision left in 2005 taking driving, print reading, face recognition, and surrounding detail into a swirling world of haze. Glaucoma onset at age 60 now costs about $800/year in standard meds that control eye pressure. I have had no other treatments since 1998 with cataract removal following extensive surgery for retinal detachment in 1993. I currently have 3 retinal exams per year with the usual tests.
I am single, not a veteran, did not seek employment after job termination in 2005, preceding my eligibility for employment-based disability benefits by about 6 months. I easily qualified for social security disability at age 63 when I was using COBRA health insurance at about $7000/year.
I have basically provided my own rehab and general disability support, easily totaling over $15,000 out of pocket. Following legal blindness in 2006 I retrained myself in computer use and began seeking orientation and mobility training (OMT) for navigating with a white canes and crossing streets. After applying to AZ social services, I waited over a year for this critical safety and independence training with only one trainer in the county, who quit from low pay. Eventually, after crying at a local low vision information group, a school special educator gained state certification and provided a few lessons and a $35 cane. I am truly grateful for the trainer who kept me moving forward when I was becoming home bound. Second Sight local rehab and People Who Care provided low vision overviews but covering information I had already learned myself.
Health “Insurance” to Susan: Sorry, you own your disability until Medicare.
At end of COBRA in late 2006, I found it difficult to get response from United Healthcare (in Florida) on continued coverage but expected costs over $10,000. AARP insurance rejected me outright because of the 3 glaucoma meds which they would be forced to cover. My professional organization, IEEE, had just suspended its health insurance offerings. I was surprised to find no possible configuration of insurance for an otherwise fit pre-medicare retiree. Turning to a local broker, I found the only choice, at $3500/year, with Blue Cross of AZ which demanded waiver for related eye condition costs. Note that I would have become eligible for Medicare 2 years after admission to social security disability which turned out to be just after I reached age 65 anyway. Isn’t it ironic that the deterioration of a few body cells at the wrong time can alter one’s retirement resources by so many factors?
Like many people independently “insured”, I but down visiting doctors in expectation that any condition occurring after start of insurance would be considered pre-existing, i.e. subject to rejection or rescission. I was basically only covered for accidents. Ironically, my inability to gain OMT increased my chance of accidents out walking or getting around. Indeed, in 2004, a decorative rock near the Prescott court house sent me to the ER for five stitches at about $1000. Inevitably, disability increases medical costs, even for insured people, if the social context, the physical environment, and safety training are minimal or nil.
One effect of visual disability is the extreme difficulty of getting usable health insurance information. I’m as Internet adept as anybody, with email since 1977, but the Medicare, prescription drug, and health insurance websites and documents are painful to use, requiring hours of work and absorption of information in memory. Now, I’m good at web stuff, but filling outh pages of forms is beyond my ability, hence I resorted to a local broker to do this for me, accepting their offerings and trusting their advice. Note that I do have personal helpers, in-house teenagers, but not up to handling complex medical forms I cannot read to check. I also felt that prescription drug policies were partially hoax as I could not find a way to match 3 standard glaucoma meds with 165 choices all couched in weasel words. A consumer protection action could well be applied to make all policies simple enough that even a visually impaired non-Ph.D. had a chance.
My Personal Feelings
- The Medicare disability gap, no help for two years, is outrageous. Here is a mature individual adapting their personal life, trying to maintain productivity and independence, seeking but finding only minimal social services, with this gap at the worst possible moment. Who thought of that torture for the permanently disabled?
- Social services: rehab are available only if you’re working, want to work, veteran, in school, or really poor. Near retired are on your own. I called everywhere to find OMT and get in touch with local low vision education resources. I was willing to pay for a consultant to guide me at a faster pace, but no such person existed. There were none when I needed them, nada, just a waiting list. Eye doctors refer to low vision specialists, located in Phoenix, who pushes exorbitantly expensive optical devices. Instead, being a technologist myself, I attended an accessibility exhibition in L.A., found podcasts and product demos, and, at a cost of nearly $15,000, assembled my own assistive technology regime. I also began writing a blog at https://asyourworldchanges.wordpress.com to share my experiences with others in the same boat.
Just imagine how hard it’s going to be on both the services and citizens as more baby boomers lose vision and need both mobility and computing re-training? There are standard occupational and educational training programs but the jobs are ill-paid, yielding much better services in coastal cities. How many low vision people, other than me, will you see walking around Prescott, although an estimated 9000 in Yavapai County?
At this point, the most valuable service I’ve received is that $35 cane and a few lessons at crossing streets that, of course, lack audible signals or driver warnings. I truly believe that white cane is my ticket to the only freedom I can have. There is no viable public transportation, So I’m often using taxis if rides are not available. And notice that the Community Center, within walking distance of my home, has no sidewalk access.
In contrast, before the recession, I was formulating plans to move to Tucson where SOAVI offers regular services comparable to Lighthouse in major cities and welcomed my computing expertise as a volunteer. Retirement-rich Prescott is incredibly service-poor.
I regret that so few other low vision people in the Prescott area can receive comparable training. I also note that there is no computer training I am aware of nor any exposure to assistive technology comparable to the audio reading, book services, and more available to veterans and students. As a technologist, I found my own resources, and I am proposing such information through courses at OLLI at Yavapai College.
- How it feels to be a citizen deprived of health insurance “choices”.
- Not health but rather,
corporations insurance. They determine the risk pools, not the forces of demographics and society. Some person pushed around the paper to deny me coverage for my pre-existing condition and, at AARP, of any insurance. Managers and policy makers determined that, no matter what else about my health, I would reduce profits in annual exams. I’ve read that about 400,000 health corporation employees spend their working hours paid by premiums to deny insurance to citizens in order to pass profits to shareholders and corporate bosses. This is as evil a form of capitalism as could be imagined with no innovation, public service, or redeeming values, just pure profiteering.
- Even more insulting, as a “self-pay” I got to fork over for the full rate rather than any reduction negotiated among doctors and insurers. Luckily, I had only year and a half of routine exams for my “pre-existing condition” but lived in fear of a major treatment that could run into $10,000s.
- I am appalled at state politicians and tax payers who refuse resources to
our system of social services so starved of trained rehab people that low vision individuals sacrifice safety and independence that probably lead to higher medical costs, e.g. $1000 when I tripped over a decorative rock down town Prescott.
- I also resent second class status as a citizen who has for nearly 20 years supplemented family members in and out of personal difficulties, but now becoming taxpayers. I was a willing safety net, but there’s no net for me.
- A visiting friend recently got excited at the national anthem played at the square, but I could find no feeling of national loyalty, only sorrow for myself and the many other disabled people I know who, with great resilience, overcome disability but always end up with less financially and more aggravation and deprivation from lifetime medical services. You own your pre-existing condition, so it goes, but why should the U.S. support a medical industrial complex that profits from exclusion of persons with disabilities.
- Finally, I know all too many people who remain mired in companies they dislike, submitting to discriminations practices, enslaved due to health insurance.
- Not health but rather,
Abolish the profiteering, paper pushing, intrusive health insurance companies and provide full support for a public option. No country can claim it is “good and great” when its health care system is rotten and wasteful at the core. Why fight terrorism abroad and still facilitate slavery and profiteering from illness and disability in the home system?
Additionally, extend the notion of health support to include the social services, rehab specialists, training centers, and public support that keeps people with disabilities productive and not needing more costly medical services. Just adding 3 more rehab people to the Prescott area would add, what, maybe $300,000 or about one middle-class house or a $1 more taxes. Now, realize that everybody will be disabled eventually and these specialists are even more essential.
Note that the disability I describe is a “social construct” as much as an individual condition. I have rather resiliently responded to my condition with great personal growth while the insurance and social services have constituted far more challenge and distress. I have only faced the full force of this dysfunctional system for about 10 of the 15 years of my progressive disability while many others have a lifetime. I have come out with a sense of service to others exhibited in my blog writing, advocacy in social media, and participation in lifelong learning distance education opportunities at Yavapai College.
Fix the system by abolishing private health insurance, acknowledging that this impoverished dogma of capitalism is far worse than any possible replacement that serves all the people. Apply the funds, after retraining insurance paper-pushers, to building a disability friendly society that, like the curb cut, will improve lives for everybody.
Addendum: So now we know, sorry,, the nation cannot afford health insurers!
Many U.S. citizens have lost our innocence about capitalism watching the fiasco of Wall Street bailouts and, now, the role of the medical-industrial-government complex in our personal lives and 1/6 of the national economy. So, it’s now established baseline that acceptable universal health care can be provided for 3% overhead, i.e. Medicare. And, facts vary, but let’s assume premiums carry 20% overhead, including profits to shareholders, bonuses to executives, salaries to underwriters (i.e. those who deny insurance or claims), adjusters who hassle doctors and their administrators over claims, processors who actually do work comparable to the Medicare 3% overhead. Oh, yeah, also lobbying, lawyering, and the usual industry hobnobbing at expensive places. All this, when in many locations there are near monopolies or few competitors. And more along the lobbying vein are the subsidiary think tanks that produce reports to influence legislators.
Can the U.S. economy actually sustain 20% versus 3% overhead costs? Wouldn’t we be nuts to continue such a costly system? Well, not if it were geared toward innovating and modernizing health care records and studies of comparative treatment effectiveness. But that’s not happening, at least for the benefit of the citizenry. No innovation, inhumanc3e denial of services, isn’t this just pure profiteering?
Here’s a counter-proposal if U.S. citizens cannot give up on capitalism in its most appropriate context, as argued by NYTimes columnist Paul Krugman. Knowing 3% overhead is the baseline, allow 5% of premiums for profit private companies. That’s all, covering administration, executive salaries, and dividends. Sorry, insurance industry investors, and I’m probably one somewhere in my diversified portfolio. Profits have been inflated, costs have not been controlled, it’s time for reparations after the war on those with pre-existing conditions. But won’t the health industry go nuts and up their charges? Well, let the insurers and health care providers go to negotiating like other claims, rather than allow the insurers to have the final call. Now, let’s slice off another 1% of premiums into a fund to improve healthcare delivery, doctors’s lives in underserved districts, the social service gap I’ve described. Isn’t that a better trade-offhann corporate bonuses or deniers’s salaries?
Bottom Line: If the for-profit insurers’ cannot even come close to a current public option, i.e. Medicare, the country cannot afford to subsidize their dogmatic capttalism. For those who cannot abide government-run systems, give a private option capped at a reasonable level of 5% overhead, stripped of denial privileges and forced to innovate and streamline to survive.
August 19 2009
Susan L. gerhart, Ph.D.
blog “As Your World Changes”, ‘Adjusting to vision loss with class, using technology’