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Health & Fitness

How Our Government has Failed Disabled People Since the 19th Century

An introduction to the issues disabled New Yorkers face and have faced.

As the title of this post suggests, disabled people have faced severe discrimination, abuse, and tribulation from within our own government and society, and it has been de jure, or "by law," since the mid-to-late 19th Century. In fact, when I bring this up, many of you will probably either dismiss it outright, choose not to care, or act like I'm some sort of monster who's "endangering the children" with my words. However, the fact is, what I am writing about is the millions of New Yorkers who are disenfranchised, forcibly silenced, robbed, beaten, raped, and even murdered, and have done absolutely nothing to deserve it, other than being born.

It may not be an arrestable offense to have a disability, but under Medicaid as it is and was, and even as it would be once Cuomo's reforms are implemented, your tax dollars go to make their lives a Hell on Earth, and make them prisoners whose differences are their only crime.

Naturally, the history for this goes back quite a ways, as with most other forms of endemic discrimination. Since as long ago as the 18th Century, people with disabilities, or who otherwise didn't quite fit what society wanted, such as teenage mothers, rape victims, openly gay men, transgendered people, or sometimes even just law-abiding nonconformists, were labelled "insane" and thrown into institutions for the rest of their lives, where they were warehoused with criminals, people with various actual mental illnesses, people with impairments and disabilities of all sorts, and so on. They would be subjected to conditions even animals couldn't survive in, be experimented on, beaten, sexually assaulted, raped, tortured, and even outright murdered, all with impunity.

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Nobody even wanted to know what went on in these asylums. This began in Europe, but picked up in the United States almost simultaneously. It was only the beginning.

Towards the end of the 19th Century, after the Civil War and Reconstruction had ended, the US had begun a new fad called "Eugenics," wherein they believed that every manner of "deviant behavior," disability, and so on should be addressed preventatively. This was done via court-ordered vasectomies and tubal legations not only for those who were born with disabilities of some sort, but for those who committed any of a wide variety of crimes, and in some cases, family members who were of sufficiently close blood relation. Eugenics programs were implemented in almost every state, and New York was among the first to have one, and the last to eliminate theirs. The justification given for this was that it was "for the good of society," and thus countless lives were discarded without thought or effort accorded to them. The concept spread like wildfire throughout a nationalist Europe in the build-up to World War I, and was the primary backing Hitler provided for the Holocaust.  In fact, before he targeted anyone else, he had people with disabilities exterminated en masse in Germany's institutions, until the Pope caught wind of it and he was pressured to stop.

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Even after World War II, and the anti-eugenics movement that ensued as a backlash against Nazism, people with disabilities continued to face as much, if not more discrimination than the gay and black communities of that day, and they often considered each other brothers-in-arms in the struggle for civil rights.  

Disabled people still could be denied employment, housing, or even the physical ability to access public locations, with no repercussions. They could even be barred from going to school, regardless of what they COULD do, simply because of something they couldn't.

It wasn't until 1975 that Congress passed the Education for All Handicapped Children Act, or EAHCA (later replaced by the Individuals with Disabilities Education Act, or IDEA), which stated that ALL children have the right to a free and appropriate public education, regardless of their disabilities or differences, and that if a student has differences which require accommodations, then they are entitled to get those accommodations so that they can learn.

Although the EAHCA and IDEA protected disabled children from being closed out of school and granted them services, it didn't help them when they became adults and wanted to find work, live on their own, and generally be productive members of society. It wasn't until 1994 that the Americans With Disabilities Act (ADA) would be passed, which would have to be amended in 2006 to undo several years of court cases designed to undermine the intent of the law. However, even with the ADA, people with disabilities still face tremendous discrimination when seeking services, simply because of the way in which programs like Medicaid are structured.

The way Medicaid is structured, there is something known as an "institutional bias." Funding is guaranteed to institutions, nursing homes, group homes, and other "facilities," which have historically warehoused the disabled and elderly since the bygone era I described at the start of this blog. There is some funding for services and accommodations to be provided in our own homes and communities, but not much. In fact, those services are part of a "waiver," which is always full beyond capacity, and for which even the waiting list is often impossible to get on.

Medicaid beneficiaries are most often forced to go into a "residential setting" against their will, because they don't have the money to sustain themselves without supports, and are often too severely impaired to work, either physically or neurologically. In the late 1990s, a nation-wide study was conducted which found that over 85 percent of abuses which take place in these facilities never get reported.  

Back in March, the New York Times released the findings of their investigation of New York State's group homes, and found that despite a state law mandating that all reported incidents must be referred to local and state law enforcement, fewer than 5 percent ever were. The CSEA also was found to be aggressively protecting employees who were verified as abusing group home residents.

The crimes ranged from physical assault to rape and murder. Almost all of them got away with it, with little to no consequences, and in all honesty, this likely would have happened even without the union's interference. When someone screams in a group home, nobody cares. When someone dies there, nobody notices.

The laws that were intended to "fix" this are already on the books.  More laws, "stricter" laws, won't fix this. There is only one real solution that would work, and it would not only save the lives of MILLIONS of New Yorkers who are suffering in these hells with picket fences, not only dramatically improve the quality of care and services for everyone who uses Medicaid, but save New York State taxpayers over $1 billion per year.

The way to fix this is to utterly replace the current funding system with the one currently used for "self-determination" and the Home and Community-Based Services Waiver program. In that, every individual, in addition to the standard Medicaid services, receives an individualized budget which is assessed based on their needs, and used to pay for (if they can't work) their living arrangements, any services they receive which aren't completely covered, basic transportation, and so on.

Right now, this state spends $4,556 per person per day on the institutionalization of the disabled (Poughkeepsie Journal, Nov. 1, 2010). That adds up to over $1.6 million per person per year. What I'm proposing would cost less than $100,000 per person per year, even with severe medical or supervisory needs taken into account. It's also been proven by studies to provide a better quality of life and quality of care, in every single case, than any institution, nursing home, or "group home" setting.

I proposed this to the Medicaid Redesign Team in January and was ignored. However, unless this is done, the abuses that began in the past will continue with impunity, and the Willowbrook scandal from almost 40 years ago will have meant nothing. I urge you to contact the Governor and your legislators, and speak to them about this critical issue.

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