Assumptions to be Challenged
•Seclusion and restraints are therapeutic
•Seclusion and restraints keep people safe
•Seclusion and restraints are not meant to be punishment
•Staff know how to recognize potentially violent situations
[Facts About Seclusion and Restraint]
•Seclusion and restraints are not therapeutic. There is actually no evidence-based research that supports the idea that restraints are therapeutic.
•Seclusion and restraints do not keep people safe. The harm is well documented; not only the physical harm, but also the emotional and mental harm. Restraints actually harm and can cause death. Broken bones and cardiopulmonary complications are associated with the use of seclusion and restraint (FDA, 1992; NYS OMH, 1994).
•Even though most staff would say that seclusion and restraints are not used as punishment, 60-75 percent of consumers view it as punishment for refusal to take meds or participate in programs.
•Holzworth and Wills, 1999, conducted research on nurses’ decisions based on clinical cues with respect to patients’ agitation, self-harm, inclinations to assault others, and destruction of property. Nurses agreed only 22 percent of the time on what constituted a violent situation. The longer nurses have worked in mental health positively correlates with greater consistency in determining potentially violent situations.
•In 1998, the Hartford Courant completed a series of investigative reports concerning the use of seclusion and restraints and found an alarming number of deaths. The majority of deaths related to seclusion and restraint are a result of asphyxiation or cardiac-related issues.
•Even more disturbing was that many of the deaths were unreported. Few States require the reporting and investigation of a death in a private or State psychiatric facility. The Harvard Center for Risk Analysis at the Harvard School of Public Health estimated that the annual number of deaths range from 50 to 150 per year—which translates into one to three deaths every week (Weiss, 1998)
I try to keep this blog pretty neutral on political issues, however I am also becoming increasingly aware of the general public’s gross misunderstanding of why ADAPT and other disability groups are protesting so prominently against the senate’s healthcare bill- and it’s a lot more complicated than preexisting conditions and losing insurance.
If you can make it through this, there are cute puppy photos of VSEPR at the end (from when he was an 8 week old ball of fluff).
I will start by saying I, like everyone, am quite biased on this subject. I am disabled, I am involved with several disability advocacy groups, disability activism groups, and disability coalitions. I am close to people with all sorts of disabilities. And many of them are a part of the community doing wonderful work because of medicaid.
There’s a perception that institutionalizing people with disabilities (physical and mental) is a thing of the past. And that institutions and nursing homes are significantly safer and more dignified than they were “way back when”. Neither of these are true, and a big part of whether someone who is disabled is a part of the community or is locked away in an institution has to do with where you live and your access to medicaid.
Medicaid is the primary insurer of low income individuals and individuals with disabilities, and almost half of children born in the US. Without the Affordable Care Act (ACA/Obamacare), it is often the only insurer for people with disabilities.
On a federal level, medicaid must cover the cost of a nursing home, but individual states can elect to offer what are called waivers for home-care for “non-skilled” and “skilled” medical care. “Non-skilled” is typically an aide who helps an elderly person or person with a disability function in the community but not providing skilled nursing. This can look like anything from helping someone with a physical disability dress and feed themselves to transporting someone to community events to attending doctors appointments to simply using the bathroom. “Skilled” care might be an in home nurse for maintaining IVs and IV medication or nutrition, in home physical therapy, helping with feeding tubes, or any number of other things an individual may not be able to do effectively by themselves. These services are what allow many disabled people and elderly people to stay in their homes and a part of their community. Private insurers generally do not pay for these services long term. Disabilities, however, exist long term.
Without medicaid waivers, becoming significantly disabled and not having access to a very dedicated family or an enormous amount of money to pay for these services means you are sentenced to live in an institution, away from the community.
The federal government is not saying “no” to waivers with the AHCA, they are restructuring the way they pay for medicaid. Rather than reimbursing states for how much medical care actually costs, the federal government would only pay a set amount per person (like a block grant). So, states that currently offer waivers would no longer be reimbursed for those waivers and often don’t have the budgetary means to offer them. This means that more and more people with disabilities will likely lose their access to the community and ability to live independent, dignified lives if the AHCA is passed. I, and most of the protesters, believe the right to get dressed and go to work, use the restroom, and be bathed without being institutionalized is a basic right that should be protected by the federal government. The AHCA deeply threatens that.
This is just one aspect of why this bill scares me and so many other people with disabilities. The bill and the issues surrounding it are complex and take years to understand. There are many problems with insurance and our healthcare system and medicaid is no exception, but in my opinion, gutting medicaid is not the right answer.
Help us be a part of society and contribute by educating yourself on this and expressing to your representatives how you think they need to vote to protect your community’s needs.
And as promised, puppy pictures:
It is not ~only natural~ to suddenly have to be taken out of your home, away from your independence, family, friends, pets, etc., because of who you are. American society largely thinks it is, but it’s not. Losing these things is devastating to anyone. It’s also totally unnecessary. There is nothing magical about places like nursing homes and other institutions that make them provide something that can’t be provided to us in our own homes. We’ve just been culturally conditioned to believe there is. I’m on my state’s developmental disability Medicaid waiver program and everyone here is scared shitless of what could happen, both to disabled people and to the jobs of the people who currently provide us services. (My home care agency is one of the largest employers in the county. This stuff affects (both disabled and nondisabled) staff, case managers, administrators, etc., not just (disabled) clients.) Disabled people are often the first people who start dying (and putting us in institutions kills us faster, this is known – even aside from the other things we stand to lose, of which I’m not sure if losing my cat or my freedom is worse) as a result of budget cuts when times get tough in a country. Wherever you live, don’t let us disappear without a fight. We are not tragic figures who need to accept that we’ll live in institutions forever and/or die before our time because that’s Just How Things Are. We’re people just like you who it harms just as much to forcibly imprison us against our will just because of how our bodies/minds work, and if you don’t think that’s what it means you aren’t paying close enough attention.
All of us have been brainwashed to some degree to accept this state of affairs but it is in no way normal, natural, inevitable, or right. I am still angry that when I was a young child, my neighbor disappeared forever and was sundered from most of her family relationships in any real way, and nobody thought there was anything massively messed up about this. She had severe MS that came on suddenly. She never left the nursing home. Her family occasionally visited her. People think this is normal, so they get sad, but they don’t often get mad. People think that our disabilities are to blame, that this is the only “cost effective” way we can exist, and that “cost effectiveness” is an okay way to judge ethics even though we don’t judge other accommodations for the limitations of nondisabled people that way.
(Don’t believe me? Calculate up how much money is spent on walking people who expect chairs and benches to appear every single place they go, on sighted people who need lighting to navigate in the dark, etc. That’s not a joke, it costs a crapload of money but since they are accepted by society as normal, nobody forces them to live in special places that are the only places that have lights or chairs. Nobody then blames them for being unable to handle a world with no lights or chairs – the world outside these few special institutions that have funding to give them lights and chairs. If this sounds ridiculous to you, it is – but it’s equally ridiculous to act like having a feeding tube or a wheelchair means you need to live in a special designated place for people with feeding tubes and wheelchairs, away from everything and everyone familiar that you care about.)
So please. If you’re sleeping here, wake up to the fact that none of the way disabled people are treated by most of American society is even slightly inevitable. Wake up to the fact that there are already alternatives – these are not a hypothetical utopian world, they exist now. And don’t go back to sleep. Don’t watch us die and get disappeared into institutions – both are already happening and can happen more – and do nothing about it. Unlike most oppressed groups, disabled people are a group that anyone can join at any time in their life with no warning at all. And whether we were born this way, acquire disabilities, or both – we are still human, we still have all the same innate wishes for life that everyone else does, and it still harms us just as much to decide that we’re not capable enough for normal society and need to be put away for our own good or to avoid becoming burdens or other BS. And this state of affairs is not a tragic and sad inevitability, but rather an injustice, a horribly widespread crime against humanity, that needs fighting, fixing, and changing. And needs to be prevented from getting worse and worse.
I know it is hard to face this. I know that denial is easier – especially if you’re not disabled and think that if you just do such-and-such a thing it will never happen to you. Especially if your fear of disability is still bound up with a fear of death – since so many treat the two as nearly identical, or disability as innately worse than death (so why help us live good lives, that’s ~impossible~, right?). Just please, please pay attention and do something. Even if you’re not disabled now, likely you or someone you are close to will be within your lifetime, and wouldn’t it be better not to have to fear being abandoned or institutionalized (or both at once) when the inevitable disability happens? And not to have such a fate treated as the sad but inevitable thing you must accept as a consequence of changes in your body that you had little to no control over?
not to make a million posts about the same thing but if you support someone’s right to say yes to something but not their right to say no you don’t actually support their ability to make choices
i’m just saying it would be cool if supporting the self-determination and autonomy of mentally ill people included extending that autonomy to decisions about medication
i’ve seen people support self-determination in the form of self-determination in the form of being able to self-diagnose, the right to have access to treatment, etc
but then those same people are silent about or actively oppose people having the right to refuse treatment
EDIT: i’m not implying everyone who supports self diagnosis or the right to access treatment also opposes the right to refuse treatment. i’m just saying there are some people who are hypocritical and support autonomy w/r/t one and not the other
“I can’t do this thing”
“if you REALLY can’t do that thing, you should be imprisoned! checkmate”
I don’t hate allistic people, but I don’t think they should be allowed to drive. With their constant need for eye contact, I’m afraid that they’ll take their eyes off the road just to make eye contact with their passenger, causing them to crash.
I don’t hate allistic people, but I’d be reluctant to hire one. With their constant need for conversation, I’m afraid that they’ll frequently stop working to have a conversation with their coworkers, and because they must make eye contact, they won’t be able to work and talk at the same time.
I don’t hate allistic people, but sometimes they just require too many accommodations. For example, they throw a massive temper tantrum whenever one person wants to be left alone. They’re also unable to understand that they can’t relate to every single person’s experiences.
it pisses me off how opposing the sexual, physical and emotional abuse of mentally ill people in institutions isn’t seen as an integral part of fighting ableism against mentally ill people, so much so that you can actually be called ableist just for talking about this kind of abuse even happening
like what kind of understanding of ableism against mentally ill people are you working with if “opposing the institutional abuse of mentally ill people” = “ableism” but “actively supporting, endorsing and defending the institutional abuse of mentally ill people and the institutions that perpetuate it” = “spreading Mental Health Awareness”