I by no means mean to insult or offend anyone and I do not intend to break rule 10, but his question has been bugging me all day.
I’m talking about people with an IQ score of less than 40. Do their parents take care of them? Do they go to some sort of home similar to the ones dementia patients go to?? Do some of them die from genetic related reasons?
How do most people with severe/profound intellectual disabilities live their adult lives?
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Blissfully unaware of the current shit storm in which we’re living.
They become The President, twice.
My mental disabled brother, was cared for by my parents till they passed away. Now he lives in a group home, with 24 hour care. Most people like him get government aid.
Adults grow old taking care of their adult children who cannot grow old. Love and compassion are strong motivators. Every year, you grow increasingly more concerned about what will happen when you are no longer here.
One day at a time, i’spode
They just kind of don’t. I work at an arcade and we have a lot of people with autism from every end of the spectrum come in. You have those that fit right in and I couldnt tell you who the counselor is because everyome seems “normal”. Then you have some that come in wheelchairs, bibs, and just mutter nonsense. They are literally spoonfed and in diapers and that’s unfortunately just their life.
Group homes or at home with caretakers
I know a mechanic shop that hired a super disabled person and let him live in the apartment above for free so sometimes miracles happen by kind human beings
I worked with adults with developmental disabilities and delays for years. Typically what happens is an organization provided round the clock support. This means a social worker or advocate stays with the individual 7 to 8 hrs per day. When the shift was over, another person would come in to relieve. We were available in the home and accompanied them at work. The goal was to support but not do everything for them. I worked with folks who had the intellect of a person anywhere from 3 to 10 years old. Hope that helps.
A lot of it depends upon the resources available to the person and/or their parents, the severity of the disability, and if their are also severe health issues that need to be taken care of too.
Whether or not the person lives at home, in a group home, or in an independent setting, is dependant on the same basic factors. If someone is disabled to the point they can’t really function, they will get Social Security Permanent Disability, which will help cover a portion of their living expenses. They also (ideally) would have access to a DSP, which is a Direct Support Professional, that helps them with daily tasks like getting to appointments, shopping, hygiene, etc.
One of the more interesting aspects is that for the most part, the DSP has to respect the autonomy of their “clients” even if that means allowing behavior that’s potentially harmful. (Drinking, Drug Use, Poor Eating Habits) Since the person is an adult, and has the rights to do more less what they want, the DSPs role is mostly to assist with tasks, more than life guidance.
It’s an extremely challenging job (DSP) not only because of the line you have to walk between helping, and interfering, but because you also have to be trained in how to deescalate (sometimes physically) someone that maybe be in mental health crisis, lashing out violently towards the DSP, or others.
This is an excellent question that Reddit is uniquely equipped to answer.
They are what brings money on my table.
I work with severe handicapped people.
Am on work right now, but they still are sleeping, I love my lazy saturdays.
My niece is profoundly intellectually disabled at age 24. She cannot read or write and functions somewhere around the age of 4. She speaks but not well and is autistic with a genetic anomaly. She will lice with my sister until my sister dies and then will probably end up in a state run facility, assuming the still exist.
If no one were to provide care for her she would have the ability to feed herself but not much else. And only if the food were easily prepared.
I have a neighbor who daughter has Down syndrome. She lives in a group home. There are a couple guys who work at my local grocery store, I don’t know their living arrangements. One of them loves riding his bike around town. In two weeks my wife and I are going to a friend’s daughter’s graduation. She seems like she’s at a level where she won’t be able to have a job but could live in a group home with support. It’s a range.
Even though what they say doesn’t make any sense, some of them can be really entertaining to the point that they gain a following and get elected President of the United States. Then they get to live in a special white house where everyone takes care of them and tells them they are smart.
So, fun fact: most cognitive tests won’t give you a score less than 40. At that point, the test can’t be used and we do different assessments.
I have worked with this level of disability my entire adult life and currently teach high school students who fall in the range you are thinking. IQ tests are not the be all to end all, but typically around the 70ish range it is much less likely that a person can live independently. There are a whole host of options:
-Live on their own with family support. I knew one family that put a mother in law house in their backyard for their son. IT gave him independence while allowing them to be right there to support him.
-Live with a roommate, family supports from nearby. A family I worked with both parents were intellectually disabled. Bot of their parents helped out although did not live with them, they were one of my favorite families to work with. So supportive of their kids. I’ll take a hundred parents like them any day over parents who are cognitively average/above average but who don’t care.
-Live with family. We work with our students to be as independent as possible within this setting (completing chores, making basic meals, having interests/leisure activities). That looks different for every student. One student, being able to lift their arms to help with putting on a shirt or scoop food with an adapted utensil to feed themselves may be our goals. For others, it may be completing chores, cooking simple meals, having a bank account, etc.
-Independent supported living. These are homes where people with disabilities live (typically with roommates). The level of support depends on the needs. Some may not have workers 24/7 but do have workers in and out each day to help. There maybe “sleep shifts” where workers are onsite but are sleeping in case of emergency. There maybe 24/7 awake support, or medical support depending on the needs.
-Group homes. I worked one in college. This is for the people who are the most disabled. I had some residents who could not even independently move most of their body.
Employment can look like typical employment (often minimum wage), supported employment which is a job in a typical setting specifically for those with disabilities and often includes more supervision, sheltered workshop (which also provides training similar to IEP services in school with the eventual goal of moving to supported employment) or none at all.
And yes, many of our students will die at earlier ages due to medical complications related to their disorders. But others will live a typical length of life.
My great uncle has a severe intellectual disability. His parents set up a trust fund for him before they died and gave my grandmother access to it so she could care for him. When she died, my dad took over that job. From what I understand, the fund isn’t enough for him to be in a professional setting, but just enough for his bills/medical stuff to be paid.
My uncle was taken care of by his mother until she died, and his sister after that until he passed away in his early 70s.
He couldn’t work, or speak normally, he couldn’t write or read, but he did draw pictures late in his life, and he had a pretty good memory. He couldn’t make even a sandwich, but he was pretty organized and liked to dress nicely. He was funny and liked to watch movies and joke. But only his family really understood his language and if he was joking. He was unable to communicate with other people, so family had to assist in translating him to doctors and new people. He actually was nonverbal in his early life, but he eventually started speaking.
People hated people who had disabilities when he was born back in the 1930s, and people gave his mom shit for letting him come out in public. They said she should keep him hidden away in the attic or get him sent off to an institution, but I guess she was too good a person to do that. Back then the institutions were horrific.
People are once again starting to act like they hate disabled people, and I don’t want it to go unnoticed. I’m not okay with going backwards here.
So, they either have caretakers, are taken care of by family, or they are institutionalized. It varies.
I’m a pediatric home health nurse and there are many ways they are cared for, usually the parents learn how to care for their disabled child firstly. Meaning if they need a tube feeding or respiratory treatments or even catheterizing. Insurance might pay for someone like myself to co,e into the home and basically provide respite care so the parents can work or do their errands etc. Or they may be institutionalized in a nursing home or an assisted living facility depending on what insurance covers and family’s wishes.
Happily
My sister inlaw (45) has an acquired brain injury from birth. She lived with her parents until her mother got sick about 5 years ago. She was transitioned into a “group home” (it is just her and one other lady a few years older than her in a house with full-time carers)
She moved into the house over a few months, it started with just going to the house for a few hours, then for a sleepover a few times, then she would stay a few days at a time before she moved in full time.
It was good for her because she didn’t have to watch her mother (my MIL) slowly die from cancer, and it gave her mother peace of mind knowing she was looked after. She also gained a huge amount of independence, but she does need full time care. She has the mind of a child, she has no concept of money and could very easily be taken advantage of. While she doesn’t need help with hygiene or feeding herself, she definitely needs someone to tell her what to do and how to do it at all times. She lives about a 10min drive from her father and sees him (and us) multiple times a week.
My FIL wanted to keep her home with him, but my MIL wanted to be involved in the transition and she didn’t want her husband to have to deal with all this as he aged.
My husband and I were never asked to take her. My inlaws said she is not our responsibility. And her care would fall on me. I already care for my husband who is physically disabled.
In Australia we have a thing called the NDIS. It covers all the cost of care for people living with every type of disability you can imagine.
Not very well
My very disabled relative is taken care of by my slightly less disabled relative, their sibling. They live with their uncle and get some logistical support from my parents and aunt.
Very disabled relative gets social security. Less disabled relative is paid a small amount by the state to care for their sibling.
Severe to profound intellectual disability is below 35. Someone with a 40 IQ would struggle communicating on a complex level, and would need more support than a typical person, but theoretically could still be able to take care of themself independently and may even be able to live independently. Everyone is different and some may function better than others even at the same IQ level.
About 3-4% of people with intellectual disabilities have it on a severe level (below 35 IQ) with 1-2% having it on a profound level (below 20). These are the people who cannot take care of themself independently and need 24/7 care. They will most likely be taken care of by family and if there is no family for whatever reason, they will be taken to live in a group home as a ward of the state.
Government income.
My uncle in law had Down’s, he lived with his parents until they passed away and then he lived with his brother. He did a little “job” which was basic tasks in a program and he lived to be somewhere in his fifties until he passed away.
Taking care of people is hard work but it’s what you do for family.
All of the above.
I work in a group home where we assist people with ID to live as close to independent lives as they are able. Some of them are more self sufficient and only need a low level of care, and some need full assistance, and everything in between. Some people still have a close relationship with their families, and some haven’t seen their families since birth.
In Australia there are care homes where disability support workers stay so they have 24 hour care looking after medications/food/self care as needed as well as community connections.
Some become president.
My brother is intellectually disabled and he lives with my parents, he can do most self care tasks but can’t cook, he busses to and from his “day base” which is essentially just a daycare for adults they sometimes have outings and they teach some life skills, he can bus to other activities like church or sports but he’ll never be able to drive. My parents were also quite strict about him being as independent as possible, eventually he’ll need to go into a home when my parents pass.
There’s also the option of residential homes, where they’ll have support workers come in and some are more independent than others so don’t need as much help getting around and doing things and some aren’t able to do anything by themselves so they have round the clock carers coming through.
I used to work with the people you’re talking about. Some of them did still live with their parents and attended day programs. Some lived in a group home setting with full time staff; a few even had close family members who visited frequently and were very active in treatment plans and behavioral therapy. Most had jobs of some sort. My primary responsibility was to go into the community, find those jobs, and provide workplace support for these individuals. One client in particular comes to mind: non-verbal, paralyzed except for one hand, used a feeding tube, the works. He loved slamming buttons with his good hand, so we rigged up a letter folding machine with a giant red button he could press, and once a week his caretakers would drop him off so we could sit and fold all the outgoing mail for the local American Cancer Society office. Afterwards he went to the park with his grandparents if the weather was nice, otherwise he got to watch tv or listen to music. Not sure if that fully answers your question, as the millions of people who live with disability are not a monolith, but in short, they go to work, hang out, and live very much like anyone else (albeit with a different support system).
If only we could be as happy in our world as they are in theirs…. ponder that
There are several options such as state hospitals for severe intellectual disabled individuals, licensed group/host homes paid through Medicaid, or their elderly parents/family caring for them.
They run for, and win, political office
>Do their parents take care of them? Do they go to some sort of home similar to the ones dementia patients go to?? Do some of them die from genetic related reasons?
Yes.
My sister has a profound intellectual disability and cerebral palsy.
I’ve also worked in residential services for people with developmental disabilities.
It depends on your country, and if in the US, state.
Federally, adults can get Medicaid (healthcare) and SSI (welfare). If there is a profound enough disability, then Medicare gets thrown into the mix.
My state has supported employment and day programs – this can vary from making art, to admin, to essentially licking envelopes (employment), and day programs, which are kind of like daycare.
In my state, there are residential programs which support people who live on their own in the community and also run group homes for people who need more care.
I live in a blue state with decent services, and it’s shit. Direct support can get paid less than fast food. Places are usually understaffed and undertrained.
My parents are middle-class and are currently, and inadvisably, taking care of my sister by themselves. Eventually, depending on the state of the govt, she will go into a group home, and I hope to live in an attached house or nearby.
I am hanging on to being middle class. If they get rid of Medicaid, then it will only be a matter of years before my sister and I are homeless. I cannot afford her medical care. If state programs dry up, then we will be entirely reliant on the kindness of friends and strangers, because there will be no one to take care of her. I will either need to take care of her or hire someone to take care of her while I work for marginally more money.
She’s 3 years older than I am, so I can’t take care of her forever. Without social security and Medicaid, we will be completely reliant on charity or will die in the street. Maybe that’s what RFK jr’s camps are for.
If social security and Medicare remain, then she could have an okay-ish quality of life, and I will be able to support myself, or at least only have to worry about myself.
Certified Individual Residential Alternatives, “Group Homes”.
They get SSI and Medicaid.
My relative lived at home until his mother was too disabled to care for him. He had a failed stay with a sibling before entering an institution. Shortly after that, most institutions were closed and he started living in group homes. He lived in two group homes and had a much more enjoyable life because he was expected to contribute through chores and they did outings to beaches, camping in the woods, etc. He spent the end of his life in a nursing home due to a severe health decline.
In my country, there are both institutions and many small assisted living homes.
There was one of the latter on the street where I grew up.
It was a normal house and they seemed to live as normally as possible.
They lived 5 people there, who were 3-5 year old intellectually. They had carers who were there with them.
During the day, they went to “work” at a day facility.
They seemed to thrive and were nice and harmless.
I think it is the best way these people can live.
My aunt lived with my grandma and then we got her set up in a group home. I work in healthcare and lots become homeless. Parents are going to die, so get backup systems in place before that.
People with profound disabilities often can not live alone they either live with family or have caregivers who take care of them. Sometimes, they are placed in homes or facilities if they require round the clock care.
My youngest son is 5, but he will likely never be able to live alone due to his profound autism
My 65 yo sister lives in an apartment with a caregiver because of my dad’s military retirement.
A lot live with family if they can, but many move into group homes or assisted living facilities that are set up for long-term care. Some do have medical complications depending on the cause of their disability.
They look forward to the next mcu movie or series of love island
My child has an IQ in the 40’s and I plan for them to live with me as long as I’m alive (Lord willing) and then hopefully a family member (several have said they would)
My cousin has a severe learning difficulty, he must be well into his 40s but is mentally no older than 7 – such a lovely person. He can’t talk well (only actually over the last few years it’s come along) and his parents are the ones who can translate that. He’s always lived with his parents, he used to go to a daycare but they took funding away so my aunty took her retirement and looks after him FT. He spends a lot of time doing jigsaws with his gran, my nephew is 9 and they like to play with trains together.
I work with people with intellectual disabilities, the answer is it really depends on their disability and how much they can take care of themselves, whether they have severe problem behaviors, and just plain luck.
Many people who are lucky enough to come from good families able to care for them live with family for as long as possible. Institutions are less common now, but there are smaller groups homes and other supported living situations. That’s often not such a great situation because you have a revolving door of underpaid staff. Some stated have foster care like options where the individuals can choose host homes.
They often don’t live as long because being intellectually disabled they ooften make poor life choices like eating only junk food or smoking. Also they aren’t always able to communicate health issues well so things get missed until it’s too late. And many in this population are given a lot of psych drugs to manage their behavior and those take their toll on the body.
Where I am, there are day programs, organized activities, and various types of sheltered workshops and assisted employment setups to help them live more meaningful lives. A lot depends on whether they have good advocates in their lives to get them access to these.
They run for Congress.
Parents, group homes and jail.
Here in Germany, there are group homes run by Diakonie or Lebenshilfe ( I worked in one). Each resident gets their own room with a bed, desk, Armoire closet and usually a TV or stereo. They can work at the Werkstatt for a few euros per hour. The residents eat together, have fun movie nights in the living room, do sport, sing songs together and have outings. They are usually sweet and funny people, with unique personalities. It was fun working there. It’s a pity that many poorer countries don’t have these things. I shudder to think how these handicapped people are treated in some places!
Most people with intellectual challenges aren’t severely disabled, which is great. But the ones that are do all of the above – live with family or group homes.
I work for an organization that provides homes and supports for people with Intellectual and developmental disabilities. There is a wide spectrum of independence among our clients. Some need 24 hour care and others just need help with managing finances or doing basic chores. Its mostly paid for by SSI and state funding. We’re based in Oregon. That said most people in that situation are either supported by family or end up homeless on the streets.
My SIL is in her 40s, but illiterate and mentally around 8-ish. She lived with her parents off and on as an adult but they found she flourished better in a group home where someone can give her attention round the clock, not for any medical reason, but more because her behavior was better when given full time attention and consistent routine.
She currently lives in a small home run by a single woman with one other disabled resident in her care, and goes to a day program during the week. She receives state funding and my husband oversees her care and finances (ssi and supplementing when she needs more that her ssi doesn’t cover.)
We’re fortunate that my SIL has plenty of other family, not just us, so she will always have someone overseeing her care, but that’s not the case for a lot of people. I think they’d otherwise end up in a large state run facility, with maybe an overworked case worker as their only means of advocating for themselves.
Trigger warning- mortality/suffering
In some situations if government care can’t happen- the disabled person is at the mercy of charity.
Meaning- this is why medical science is trying to reduce the amount of disabled children born to impoverished groups.
Also, in some cases, these people die either by natural causes or “misadventure”….
There was a disabled woman in my town and I’d see her out wandering. I assume she eventually died of either exposure or old age. There was barely funding for law enforcement so neighbors would return her if she came to someone’s house.
The answer to this depends on how the family feels and also what resources they have access to regionally and also money wise.
My friend’s disabled brother lives in a full time residential facility where he has a “job” – I’m not sure exactly what it is but he is able to do certain tasks. (Like in Louisiana they help recycle Mardi Gras beads by detangling them and sorting them.) Friend’s brother comes home sometimes for weekends or special events.
Another friend of the family is almost in her 20s with a severe intelectual disability and she lives at home with her mother as her full time caretaker and probably will for the rest of her mother’s life.
Other families will have a caretaker move in with them (expensive option). They will have someone else cover weekend shifts for when the main caretaker is off.
Like elder care, it depends on their support system, finances, circumstances, and environmental factors/how the person was raised.
I have worked with mentally ill, the elderly, disabled individuals, or what American society would consider “the vulnerable population” most of my adult life. Every situation is different, but like the rest of us,if you don’t have familial support and loved ones, along with a decent amount of money, the outcome is pretty bleak. Because these people cannot care for themselves, they are at the mercy of others, whether it’s family, a group home/facility, or the system/state.
These groups of people are often taken advantage of/mistreated due to not being able to advocate for themselves. Sometimes, family can be the biggest obstacle and abuser in their life, But often times It’s the system failing the individual. Facilities and agencies are short staffed and underpaid, so the quality employees are often burnt out and jaded.
Due to these jobs being easy to acquire and paying slightly above minimum wage, They are also filled with unqualified employees who do little more than fill a space. But, due to short staffing , these employees aren’t correctly handled, and their behaviors often slip through the cracks.
It will vary depending on the individual, but they probably have a carer
In Canada, my cousin was cared for in an institution for a time and then Catholic Social Services cared for him in a group home. He was lucky in the home- some of the most loving and caring people looked after him. It took me about 50 years to find him due to horrible family. When I did, they showed the same love to me.
My friends work for a company that cares for people with intellectual disabilities & have three adult men that live with them full-time.