A Primer on The Privacy Act of 1974

Given the release yesterday of a “medical record” by the nation’s top politician, we couldn’t think of a better time to discuss one of the most important pieces of legislation to ever get passed into law. While all of the statutes we have lately discussed are, we argue, vitally important to every American, we think that in a visceral sense, understanding this statute is a very good way to see how, where and why all of the others work (or don’t) both individually and together. It is also a statute that applies to every American regardless of race, gender, sexual preference or disability.

In broad terms, The Privacy Act governs the collection, use and dissemination of personally identifiable information by the federal government. It also requires (with a few specific exceptions) that release of said information by the government may not happen without the specific written consent by said individual. Obviously, this also extends to medical records, even as HIPAA flows from this statute and extends it in a particular arena.

The Act also requires (remember this was immediately after Watergate) that any individual could request any and all government held files and further permits individuals to request amendments to such records if they are incorrect.

Where this statute becomes germaine for our purposes specifically, is that it deals directly with a tangential issue also addressed by HIPAA and the ADA. Specifically, the Privacy Act not only builds on the Constitutionally protected right to privacy, but also creates the ability for individuals (for example) on a government-funded health insurance plan, to be able to demand that medical records accessed by the government be updated and kept current. It also means that individuals on government healthcare have the right to expect that their disabilities (for example) not be used against them when seeking employment.

There are those who might find the argument that disability is as much if not greater a “liability” as race in seeking equal opportunity in America offensive. However just a comparison between the state of the PWD vs. the African-American community (which is statistically about half the size of the PWD community even as it also includes minorities of course) shows that the former is in far worse shape due to discriminatory attitudes and practices that are so ingrained that they are often invisible to those not affected. Starting with (for example) the fact that the federal Department of Labor does not have or even attempt to officially track statistics on the real unemployment rate of this community. Discriminatory attitudes are also on prominent display at the Department of Education, where for example in North Carolina, any “gimp” with an entrepreneurial bent (no matter what kind of disability they have) must take a psychological test before being given grants or loans from the Department of Ed. We understand that ink blots for one are inherently fascinating to headshrinkers if not bureaucrats, but don’t really see how this predicts entrepreneurial ability much less success. This treatment stands in stark contrast to the way the “able-bodied” are treated not only by the Department of Education but all other federal and state agencies. Imagine the outcry if the SBA (for example) implemented a similar across-the-board approach to the average entrepreneur.

Under Constitutional rights to privacy, individuals are supposedly protected by “tort” law to guard against false statements and premises made against them. In the case of the PWD community, where “ability” is frequently dismissed or ignored in favor of focusing on the disability, there are very few remedies and rights that ultimately escape without the shadow of doubt and/or prejudice.

And amidst all the overtones of the current discussions of Obama’s heritage based on his skin color if not his “ability” to get into some of the nation’s top schools and offices, we can’t help but think, what if he had a disability instead of extra melanin in his skin?

A Primer on The Civil Rights Act of 1991

Along with the passage of the ADA, another piece of legislation passed about the same time (The Civil Rights Act of 1991) guarantees PWDs the same Constitutional protections as minorities – specifically that they are worth the full “value” of a white man.

The Act was originally passed in the Reconstruction Era and until 1991 only applied to minorities. Ever afterwards, it also applied to the PWD community, even though legal challenges if not a broad understanding of the statute remains oblique and largely untested.

What the statute also essentially does is address not only the “contractual worth” of PWDs, it also ostensibly creates economic “rights” or an economic “floor” for PWDs. This means that, for example, a PWD may not be hired at less than the minimum wage (for example).

What it also does, however, is create mandates for the government where goods and services vital to maintaining that “contractual” worth are provided to this community.

Starting with, of course, healthcare.

While a great many of the failings of the ADA remain to be addressed thanks to aggressive federal push back in the courts (for example), one of the most instructive things to come out of the last twenty years of litigation under the Act was attempts to “define” a covered disability.

The ADA Restoration Act will address many of these issues, we hope, but taking from that line of reasoning, we contend that in fact, since so many people with disabilities require medication to manage their disabilities so as to not meet the federal standards of being “disabled” that this is actually a very interesting legal space right now. Specifically, using that logic, a person with a disability who can manage their disability with medication (starting with diabetes) is therefore guaranteed a certain “floor” of medical service. Without such service (including access to medication, regardless of the ability to pay), such a person very well may be “disabled.” With it, they will be a PWD, able to take their rightful place in society in every place the “able-bodied” now participate. As such, the state has a vested interest if not obligation (starting with a fiscal one if not a civil rights based one) to insure, if not is forced to require, unimpeded access for every PWD to state provided medication to preserve their “contractual value.”

We realize that for the non legal eagles reading this, this may all sound like complicated legal mumbo jumbo.

However in the middle of budget battles, from the federal to the state level, we think this is an important point to raise.

Particularly as we have a service provision model which not only addresses it but creates a very powerful “fix” that will reverberate both directly on the bottom line and in indirect costs that we anticipate will become increasingly obvious as we begin service provision.

The Missing 20%

According to data we have seen, the “disabled” (or PWDs) account for a full 5% (or one third) more of the Medicaid (or government healthcare benefit) recipients in North Carolina than the “elderly” (those over 65). The former are about 15% of recipients, the latter only 10%. We are going to extrapolate this data as a roughly equivalent “national” average even if the numbers in other states are higher or slightly different.

However, in light of just this fact, it boggles the mind that the most frequently cited users of government health benefits are “the elderly.” This is in fact how so much of the current budget debates and fights over “Medicare” or “Medicaid” are framed.

The reality is that the people most affected, for the longest period of their lives by both government benefits and “Medicare” (which is essentially the same as “Disability”) are in fact completely left out of the debate if not invisible. That’s a pretty big exclusion. National figures of PWDs put this population statistically at 20% of the country. About twice as large, we add, as the African-American or LGBT population and certainly one, across all age demographics, that will compete with the Boomers in terms of size if not wealth or relative health.

These are also people that, in fact, the Boomers have systematically ignored for the last 20 years since the passage of the ADA.

As both populations reflected in the data sets are relatively “stable” (in other words, most people over 65 receive Medicare and unfortunately most PWDs under 65 are still kept out of the job market, so this figure is also fairly reflective of overall PWD numbers), these two figures are a fairly reliable indicator of the total size of the population itself and “steady-state” recipients (in other words people who are not likely to move off the roles without significant policy in place to address it). The reason why PWDs have such an appallingly high rate of poverty if not unemployment (90%) is an issue we won’t discuss here, but we want to put our stake in the ground as recognizing it.

However more to the point, PWDs are also the largest “consumer” of government benefits of all those that receive them. Over 40% of the money spent on government healthcare in-state flows to this population. To put this in comparison, the “elderly” only account for about 26%.

This means a couple of things. It means that current efforts to “reform” the system, whatever it is called, must be systematic.

It also means that nobody is going to really affect the budget all that much if the debate only focuses on the recipients of government health benefits over 65. No matter how big and bad the Boomers like to think they are. Specifically, “vouchering” care is a drop in the bucket to the real, ongoing needs of a large segment of the population which statistically also uses such benefits, conceivably, for most of their lives – not just post-retirement.

For the uninitiated, this could seem like one of those “kick the can down the road” discussions. Unfortunately, anyone concerned about the budget these days (and let’s face it, we all are) needs to understand how imperative real reform is. It literally affects the Constitutionally defined “worth” if not “contractually defined value” of many human beings in this country. We’ll skip the wonky discussion of the implications of the 1991 Civil Rights Act in this blog post and how it intersects with the ADA, but we’ll come back to it later. The reality is that government healthcare benefits, particularly for PWDs are in fact part of such individuals’ implied contractual rights with the state if not tie into the perceived “worth” of a PWD per the Constitution.

Starting with, we argue, allowing as many of those currently on “Disability” to have every opportunity, including training, education and structural access to employment (if not real prosecution of their rights under the ADA) so that America may finally address its last great discrimination story. Not to mention start to address budget cuts in a real way and “right” the structural problems with the economy. Nothing close to this mindset exists right now in the official halls of power. One of the many reasons we decided to start this company (apart from the business case that exists) is to also bring attention to the unbelievably horrific realities of most of this population – suffering that is absolutely unnecessary if not immoral.

The reality also is that the many problems of “Medicaid/Medicare” actually work in concert to also rob PWDs of the ability to work, simply because the system is so beyond awful at the moment that it usually takes a significant amount of time to get care – so much so that it could easily impinge on the ability to find and keep employment (of any sort.)

The hidden story of the “missing 20%” in current budget discussions is also one we are working to highlight simply because it is also another “fix” that we support. It’s a far more complicated one to address, however, from the policy level, particularly in such a highly-charged debate where brinksmanship and lack of details about goals seems to be more important than focusing on the underlying issues required to create real change.

For those used to Washington politics, the response to this assertion may very well be “what’s new?”

In such a cynical and jaded echo chamber, we do actually think we do have something new.

We also think however, particularly for an administration that promised “change we can believe in,” that this is a very good place to start listening.

A Brief Primer on the ADA (The Americans With Disabilities Act)

There are several laws that protect people with disabilities (PWDs) that are not widely understood.

The ADA is perhaps the most widely cited. This is the landmark civil rights bill passed in 1990.

Today’s blog will discuss the basic premise of the ADA and provide a very (brief) description of its major tenets.

The statute was essentially designed to be “Title VII for PWDs.” Unlike Title VII, the law does not however just cover discriminatory attitudes as they occur between two individuals – the law targets other things too – like infrastructural barriers. Unlike Title VII however, PWDs under the ADA do not get any kind of affirmative action protection.

Despite its relative weakness in comparison with Title VII, however, the ADA goes much further than its immediate predecessor. Unlike The Rehabilitation Act of 1973, the ADA also requires the states to comply with federal standards. In this, it very much takes its language from the broader civil rights movement protections. It also expands the coverage of its protection beyond government to the private sector. That said, this is the least successfully implemented or litigated civil rights law to date enacted. Twenty one years after the first President Bush signed it into law, the approximately 20% of the American population that has a disability remains largely marginalized. Most PWDs subsist in abject poverty on a government stipend called SSDI or SSI and “Medicaid.” According to both advocacy groups (such as Easter Seals) and indeed unofficial estimates from the Department of Labor, more than 90% of this population also remains unemployed due to no fault of their own. Because the law is both so poorly understood if not enforced, the overwhelming majority of ADA litigation never sees the light of day. Fewer than 1% of ADA cases are ever won in federal court.

In 2008, President George W. Bush signed The ADA Restoration Act, a bill designed to restore much of the protections of the original bill after almost twenty years of litigation and decisions by the courts that rendered the protections supposedly offered by the Act almost impossible to litigate if not null and void when it came to employment. Chief among those issues was the federal definition of what a disability was – which had become so narrow that it didn’t cover the population it was designed to protect.

We think that the combination of the ADA Restoration Act and two huge populations of people with potentially new disabilities will begin to change that. The first population is of course vets from both Iraq and Afghanistan. The second of course are Boomers, who are starting to show signs of age-related disabilities. Combined with the twin forces of a larger demographic (along with planned budget cuts to “Medicare”) we believe that this statute may finally come into its own. What is being left out of the conversation in Washington these days is that there are civil rights implications (both under Title VII and even more specifically under the ADA) that prohibit certain services from being eliminated. This is why we believe that our service provides a much needed solution to many of these problems – and for both stake-holders and the government. Medical services (for one) can not just not be eliminated in the face of budget cuts, they are required under civil rights protections as part of the “contractual” right of being a citizen per the Constitution. Therefore, the task ahead for those like us is to figure out ways to make such service provision the most efficient and cheapest it can be while still providing a required floor of service. We intend to set our standards, for one, very high. The same, in fact, as we provide for the “able-bodied” we also plan to serve.

This is the real idea behind the ADA, which we intend to uphold if not set new benchmarks for in terms of not just cost and efficiency, but service provision and civil rights protection.

There are three basic parts to the ADA. These are described below.

Title I refers to employment. Specifically it prohibits discrimination in all aspects of retention, working or indeed termination. It also covers an issue which is rarely understood much less well implemented in most workplaces – specifically “reasonable accommodations.” Reasonable accommodations refer to the required steps that an employer must, by federal law, implement for an employee with a disability if they do not pose “an undue business burden.” Most accommodations are cheap to implement (costing less than $100). We think that the “greening” of both transport and real estate will actually create huge opportunities for many people (starting with small business) to actually start to be able to implement a much more structurally compliant world. The public sector, which remains the largest employer for PWDs, still only has less than 100,000 employees with disabilities at the federal level. Or to put this another way, about 1% of the federal workforce has a disability. According to statistics, most federally employed PWDs toil at jobs two pay grades below their able-bodied peers.

We intend to give PWDs first hiring preference. We also intend to be the first company to be owned and operated, if not largely staffed by PWDs to ever go public. We think we are the only private sector company in America of this mindset today.

Title III of the ADA refers to access to public space. This is where most of the most contentious ADA litigation has to date been successfully litigated, particularly in states like Florida and California. This is the part of the law that brought us “curb-cuts” (slanted access to sidewalks) as well as wheelchair accessible public transportation (for example).

Section 508 is another interesting section of the statute that will also become far more relevant to most people – specifically that all websites must create access. Online programming and websites can be made “accessible” usually with the addition of tags to programming text. This insures that people who are visually impaired (for example) will be able to use software programs to browse through sites. It also refers to things like subtitling of video – including online video – obviously an area of the world where there is limited closed captioning.

While this would seem to be ostensibly the easiest place to implement such measures, unfortunately cyberspace remains as largely inaccessible as the rest of the world. The UN concluded in a 2008 global study that less than 4% of websites were compliant with the U.N.’s version of the law. There is not a single smartphone that is technically ADA compliant although the software on them could make traveling through cyberspace much easier for many people. To test how “compliant” the major IT players are these days, imagine being blind and trying to figure out Twitter. Neither Facebook or Google are compliant either (and there are other issues and laws that these two IT giants also routinely violate). To see how well “closed captioning” actually works on You Tube (or doesn’t) click on the red “CC” button at the bottom of your favorite video.

The most significant development in this arena happened in the middle part of the last decade with a landmark, national class action suit against the retailer Target, which firmly applied this rule to private sector websites (in the past it had only been applied to government sites). There have been some other interesting cases where technology and telco (telephones) have also been the subject of successful settlements if not litigation, which include a class action settlement brought by the National Association of the Deaf against a major international Wall Street bank to allow the deaf to trade via phone (the company did not provide any accessible technology on its end.)

Perhaps the most powerful section of the ADA, however, is Title II, a still little-understood measure of the law.

Unlike the Rehab Act, and like Title VII, the ADA also applies to state governments. This means that, for example, a state is allowed to create “separate” facilities to serve people with disabilities, but they cannot be demonstrably “unequal.”

And this is where we expect to start a debate about both the state of the disability community and the services that so many of them are forced to rely on.

There is no question that Medicaid/Disability needs reform. Starting with service delivery. We argue that transportation is also a huge area where this reform should happen, and not just with the use of “green ADA compliant” taxis. That’s just the starting point.

Since most people on “Medicaid” are in fact people with disabilities (on Disability Benefits), this of course profoundly if not disproportionately affects PWDs.

We believe that the ADA if not other associated legislation (the Civil Rights Act of 1991) requires the kinds of changes we have in mind.

What those are we will gradually elaborate on in future blogs.

The ADA is actually a very simple law. It requires that PWDs have the same access to life as the majority of the population.

We hope, not only in our service provision model but also in the car we use (the first ADA compliant taxi ever factory assembled) to continue to open doors for this community, as much as intend to provide top-quality “green” travel for the “able-bodied.”

Disingenuous “Budget Cuts” For “Medicare”

We, like just about anyone alive with access to media (old, new or somewhere in between) know that the hunt is now on for savings. And as usual, everyone is looking to “Medicare.”

We do feel we need to weigh in on this issue at the moment from what we hope is a strictly non-partisan “green” stance, however it is apparent to us that despite all the rhetoric, as usual, to date, there is more hot air than substance on all sides. We would say gas, but, well, we think savvy readers get the point and we wouldn’t want to get into any confusion about “good” gas and “bad.” We run into that problem enough as it is.

However, the reality is, beyond Beltway Contortions, is that “Medicare” actually refers to all government-sponsored health insurance. While the VA (this time) is apparently being saved from all consideration, in general, VA covered medical care is the same thing as HHS covered “Medicare” – as are “Disability benefits” and of course “Medicaid.” When it comes to healthcare, the benefits are all the same. We won’t confuse the uninitiated with a further discussion of the “dually eligible.” So many monikers, all the same deal.

This means, however, for example, that doctors are compensated under the same rate, and, to get to a point, so are drivers. Even more to the point, according to some interesting figures we have seen, historically, “the disabled” or as we refer to them, “PWDs” have actually been a higher driver of care costs than the “elderly.” (We refer to those folks these days as, um, “Boomers” however much we know they really hate that. No matter how cute Robert Redford looked on the cover of AARP’s national mag not too long ago.)

Snarking aside, that’s an awfully big segment of the population that is being rather systematically ignored. Annually, not just cumulatively.

Oops.

What this also means of course is that the current calculations of “getting rid” of Medicare if not “voucherizing” it essentially means that people who have had “Medicare” all of their lives or after a disabling situation or illness, will be essentially cut off after they reach 62. Sort of like a “Logan’s Run” on the far, far, side of 30.

We won’t even begin to think of weighing in on that score, however we did think it was appropriate to bring up a topic that is directly at our core mission and one which is directly related to that problem we just mentioned. Specifically, added to this very grim situation already is that there is a great deal of transportation now (supposedly) reimbursed by HHS.

We say “supposedly” because that is really what it means. And while we don’t want to get into any Title II discussions (for one) we believe that many areas are actually in danger of (unintentionally) violating Title II of the ADA with “budget” but not civil rights law compliant service cutbacks that affect the (unfortunately still too high) 90% of the 20% of the country with a disability who is also forced, for whatever reason, to also receive government benefits (known broadly as “disability”).

That’s where we hope we can really make our first impact. We also hope that we begin to make enough “noise” on the policy level (and we don’t care where, how, or with whom, as long as we can make our point) that draining the petroleum out of Medicaid (the blanket default medical insurance program we should probably all get used to referring to) is one of the best ways to immediately figure out ways to “cut it” while planning longer term service models (like ours we not so modestly suggest) to actually make the service itself if not the transportation that serves this community, the most efficient, best and cost-effective it can be.

After all, Title II of the ADA was designed as the “no separate but unequal” clause of the statute. In “Title VII” terms (which also apply here we hasten to remind any legislators reading this), this is essentially the “no white drinking fountain” clause of the ADA.

We think this makes the point without, say, sitting in any cafeterias marked “able-bodied only” and most certainly without posting a cartoon somewhere effective with two (non ADA compliant) drinking fountains – one for the “able-bodied” and the other for “gimps.”