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”
What is filicide?
In the past five years, over fifty [70+ as of 01/03/16] people with disabilities have been murdered by
their parents, relatives or caregivers in the United States alone.
These acts are horrific enough on their own. But they exist in the context of a larger pattern:
- A parent kills their disabled child.
- The media portrays these murders as justifiable and inevitable due to the “burden” of having a
disabled person in the family.
- If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they
are sentenced at all.
- The victim is disregarded, blamed for their own murder at the hands of the person they should
have been able to trust the most, and ultimately forgotten.
- The media sends a message that if you kill your disabled child, you will receive attention
and sympathy. The justice system sends a message that if you kill your disabled child, your
punishment will likely be minimal.
- Parents of kids with disabilities see these messages.
- A parent kills their disabled child.
What does the term “filicide” mean?
“Filicide” is the legal term for a parent murdering their child. In the disability community, “filicide” is
used when talking about a parent or other relative murdering a child or adult relative with a disability.
This toolkit is specifically about filicide in the disability community. When we say “filicide,” we are
talking about a pattern of violence that starts when a parent or caregiver murders their child or adult relative with a disability and continues in how these murders are reported, discussed, justified,
excused, and replicated.
How common is it?
We don’t know. Filicide in general is very difficult to track, and filicide in the disability community is
notoriously underreported. We are aware of over 50 filicides in the United States from the last 5 years
where the victim was disabled. We know that the numbers we know of are much smaller than the
Why are we only talking about filicide against people with disabilities?
Typically, when a child without a disability is murdered by their parents, everyone stands united in
condemnation. No one attempts to understand, justify, or explain the murder. No one expresses
sympathy for the murderer. No one argues that every parent has had moments or thoughts like that.
No one understands. No one suggests that if the child had been easier or the family had had more
support, this could have been avoided. The crime is punished harshly, and the victim is remembered
When someone with a disability is murdered by their parents, the opposite happens.
Why does it happen?
Because we live in a world where disabled lives are valued less than the lives of people without
Because we live in a world where people think it is better to be dead than to be disabled.
Because we live in a world where killing your disabled child is excused, minimized, and normalized.
Because we live in a world where this is okay.
Frequently Asked Questions About Filicide
- Isn’t this caused by lack of services?
It’s absolutely true that people with disabilities and our families don’t get enough services. But that’s
not what causes these murders.
There are thousands of families across the country with insufficient or nonexistent services who
refrain from murdering their disabled family members. In addition, most high-profile cases have
occurred in upper-middle-class communities and have been committed by parents who either refused
services, or had more family services than is typical. This is not about services. Suggesting that
murders could be prevented with more funding holds people with disabilities hostage: give us what we
want, or the kid gets it!
When disgruntled employees take guns into their workplaces and murder their colleagues, we don’t
use that as a launching point for a conversation about how Americans need better employee benefits
or more paid leave. When students shoot people in their schools, we don’t use this as a launching
point for a conversation about anti-bullying policies. This doesn’t mean that we don’t care about
worker’s rights or student safety; it means that these are separate conversations, and combining
them makes excuses for murderers. We feel that drawing a line between filicide and lack of services is
- Is it a hate crime?
Yes and no. A hate crime is a crime that is motivated by bias; disability hate crimes are defined as
crimes that are committed because of a bias or prejudice against disability. Filicide in the disability
community is almost always about the person’s disability, so in that sense, yes, this is a hate crime.
Legally, disability-related hate crime can only be persecuted on the federal level if it is inter-state, and
individual states vary in their state-based hate crimes laws. Check your state to see if filicide related
to disability can be considered a hate crime under state law; if not, consider lobbying your state
legislature to include disability in your state’s hate crimes statute, or to adopt one if your state does
not have one.
- Why is it bad to try to understand why someone might do this?
Filicide is a horrifying act, and wondering how someone could do this is a natural response. But when
we progress to saying “I understand why someone would do this,” or “but you have to understand,”
we are not just saying that we have thought about what motivated the killer – we are saying that the
killer’s actions make sense to us.
Our society’s reactions to filicide reflect our beliefs about disability. When parents of kids without dis-
abilities murder their children, we are universally united in condemnation. It is only when the victim
is disabled that we pause. It is only when the victim is disabled that we are encouraged to understand.
This is a double standard, and it reveals dangerous things about our beliefs.
When we say every parent of a disabled child has had moments like this or walk a mile in our shoes or the
system failed everyone or but you have to understand how hard it is, we are excusing a parent murdering
their child. It does not matter how many times we say not that I would ever condone this: if we attempt
to make a parent murdering their child understandable, if we ever attempt to position it as a
comprehensible or inevitable or normal thing, if we take and normalize the perspective and the side of
abusers and murderers, we are minimizing and excusing this act. Doing so puts the lives of disabled
people everywhere in danger.
There are absolutely things we should understand about filicide. There are absolutely people with
whom we should empathize. We should understand that filicide is not committed by loving parents.
We should empathize with the victims. But to say, “I don’t condone the murder but I understand it,” is
to say, “This is bad, but it isn’t so bad if we put it in context.”
We do not believe that this is a good way to talk about murder.
- But anyone who would kill their child, or try to kill their child, must have
a mental illness. Doesn’t that change how we should think about this?
Filicide is not a symptom of mental illness. Filicide indicates a decision to murder. These decisions are
deliberate and often premeditated for days or weeks. The perpetrators of filicides are often evaluated
and found competent to stand trial.
Saying that only mentally ill people would commit a murder can make some people feel better, but it’s
not true. People with mental illness are no more violent that the general population – but, like people
with developmental disabilities, they are often the targets of violent crimes. When we’re talking about
cases where people with disabilities are murdered by parents, invoking mental illness is just a way of
blaming one group of people with disabilities for the murders of other people with disabilities, and
shifting the blame away from the person who is actually responsible – the murderer.
How do we talk about this?
Names: to discourage copycats, don’t use the full name of the murderer. Do use the name of the
Sympathy: as with any other murder, do humanize the victim. Do unequivocally condemn the
murder. Do mourn the victim. Don’t sympathize with the murderer.
Be mindful of anti-disability bias: don’t imply that it is better to be dead than disabled, that
disabled people experience a lower quality of life, or that we cause other people to suffer. Do use
respectful language, and do consult with people with disabilities.
Focus: don’t give the murderer a platform. Do center the victim.
Don’t refer to filicide as mercy-killing.
Don’t talk about services in the context of filicide.
Do be mindful of the potential for copycat murders:
- avoid using the killer’s name or giving them a platform
- focus on the victim, and
- avoid grisly sensationalism.
Do write about filicide against a disabled victim the same way you write about any other filicide.
How Can We Prevent This?
1. Change the conversation
Center the victim. Condemn the murderer. Refuse to “understand,” excuse, justify, minimize, or
normalize a parent killing their child. Refuse to accept this. Refuse to allow this to become our new
Call for these crimes to be prosecuted to the fullest extend of the law, similarly to other filicides.
Demand that people with disabilities have equal protection under the law. Consider lobbying your
state legislature to include disability in your state’s hate crimes statute, or to adopt one if your state
does not have one.
3. End ableism
Challenge ableism (anti-disability bias and prejudice) everywhere you see it. Challenge the idea that
it is better to be dead than disabled, that disabled people are a drain on society, that disability means
suffering, and that disabled lives are not worth living. Promote inclusion, community integration,
If you think you are going to harm your child or adult relative, turn yourself in. Call 911 or child
protective services and say “I am thinking about killing my child.”
5. Community reporting
If someone you know is talking about killing their child, turn them in. Often in the wake of a filicide
people come forward to say that days or months before the murder, the perpetrator made a comment
to them suggesting that they were contemplating homicide: “I’m despairing about my child’s
condition – I think this is the end for him,” or “kids like mine should be put down,” or even “I am
thinking about killing my child.” In addition, report any indications you might see of child abuse or
child neglect. Abuse and neglect of children and adults with disabilities is very common and extremely
under-reported, and many filicides are preventable escalations.
What do I do if this happens in my community?
1. Get the language right
Change the conversation: challenge poisonous ideas and help prevent copycat crimes. Read “How do
we talk about this?” for more.
2. Hold a vigil
Mourn the victim and call for justice. See our vigil guidebook at the end of this toolkit for more.
3. Watch the media
Encourage journalists to speak to disabled people, follow best practices for preventing copycat crimes,
center the victim, and treat this filicide like all other filicides. Refer them to this toolkit. Push back
when they make mistakes.
4. Push back
If someone attempts to justify, minimize, or normalize the murder, challenge them. Don’t let them
interpret your silence as agreement.
Call for the harshest possible sentence under the law. Emphasize that people with disabilities have a
right to expect full and equal protection under the law.
6. Call for hate crimes legislation
As appropriate, advocate for expanding state and federal hate crimes legislation to include disability
and filicide against disabled victims.
7. Hold the justice system accountable
Contact your local protection and advocacy agency, your local FBI field office, and your district
attorney. Let them know that the disability community is watching. Let them know that we are
outraged. Tell them to do their jobs.