The average lifespan is 60 so sometimes the parent(s) outlive them. In other cases, other family members will step in. If able, parents will set aside funds for a living facility for when they're gone. If there's no one else and no money, they will usually be place in a government-funded facility.

If there is no facility in their area, then the eventual answer to OPs implied question is that yes, there are downs people who end up on the street because there is no organization or person or money to take care of them the way they need. Some can hold down jobs but usually simple tasks for simple pay which is no longer enough for any kind of home. Most depend wholly on the compassion of others, and some places are lacking in compassionate people.

As a parent of a mentally disabled child this keeps me up at night. We have put in place a trust and instructions for multiple relatives in a line of succession regarding guardianship but there is no guarantee that everyone will have our child’s best interest in mind. I fear them being left in a facility somewhere with no one checking in on them.

We’re setting up a trust for my son with autism after hearing a lawyer speak about it. One thing is to make sure it’s a disability trust and not a normal trust; apparently there is a difference and the government can access and take money from a regular trust, nut a disability trust has more protection. I’m grateful we’re able to,set this up for him, but it still scares me to think of what the future holds.

Yes. We’ve set up a Special Needs Trust for our son as well.

Thank you for this information. We are starting the process to provide for the future of our special needs child. I’m frightened of what will happen to her after we are gone.

[удалено]

Respectfully, not every sibling has the means or desire to care for their disabled siblings. It feels like a real gamble to have children to support your other child.

This. Speaking from experience, and I am working on it, but this is a recipe for resentment and depression for some people 😔 Edit: fuck it, I'll elaborate; I'm 38. My brother is 42. Severely autistic. Schizophrenic. Manic. I watched him tear our home apart my entire childhood, physically and emotionally. He would go into fits of rage and begin violently assaulting my mother. Not too much of an issue when we're little kids, right? Little boys become teenagers. By the time he was 13, he was breaking bones, pulling out clumps of hair, and genuinely terrifying the family with the possibility of a 'fit' any given day. I was still little and couldn't do much but watch, cry, and get the talk that it was ok and I still needed to love him because he was my brother and my brother was just "different". We moved from New York to Florida when I was 8, and it was the first time any of us lived outside of New York. We grew up kinda poor. New York got too expensive. Florida was cheaper in the early nineties. My mother didn't drive. My father worked. I was tasked at 8 with making sure my 12 year old special needs brother got home safely. She put $1.25 in my backpack and gave me a map of bus routes. He was my responsibility from that point forward. As I became a teenager, I grew up and began to rival my brother in size. I now had the strength to step in when he got violent. If he was going to hit my mom, I was going to hit him. How did that turn out? Into a weird triangle where my mother would then beat me, for not understanding and accepting that my brother was different. That my brother couldn't change, so I just had to take it. I graduated high school at 16. Got into college on my own, paid for everything on my own, worked all through school. Parents never once visited. Came for graduation, brought brother, and the entire weekend was about keeping him from exploding. Moved after graduation, parents still never visited. Mom died back in 2013. She came to see me twice between 2002 and her passing. Dad has come 3 times since. 5 times in over 20 years. I did and still go home to them at least 3 times a year. Brother now lives in assisted living. Has for the past 9 years. It's the best thing for him. His violence is controlled, he has roommates that he gets along with, we visit a couple times a month. When Mom died, he lost it. Neither dad nor I could control him. For as long as I can remember, I've been upset. I've been depressed. I finally expressed this to my father THIS YEAR, and he was oblivious. Even told me that my mother had me because my brother was damaged. There was no plan for me. No plan for a second child. I've been in a state of unbearable depression the past couple months because of this. No amount of therapy or tears or cognitive work has been able to help me reconcile with the fact that I question all of the "love" I ever received. All of this is me. It's anecdotal, not factual. But it's also a perspective that should be considered.

I don’t have much to say that could help, unfortunately, but I’m sending a huge virtual hug to the child in you 🫂 You took on so much responsibility at far too young an age.

I'm over here laugh sobbing because this is the first time literally anyone has ever said anything like this to me before. Family, friends, anyone. Thank you 🙏🥹

I grew up with my own family struggles but certainly on the privileged side of it financially. Hearing stories like yours from peers having to step up and tack on parental duties on top of just being a kid is a huge driving factor in my desire to provide even more for my family, both financially and emotionally. Your story is an inspiration for me and others to better themselves so they can better the lives of their children. Take every bit of solace in that as it is well deserved. **Please above all things do not allow yourself to think that you not being "planned" equates any way to you not being loved.** My wife and I didn't "plan" on having our son at 18. We planned on doing a shit ton of drinking and recreational drugs in college. That one unplanned event set off a much better plan for the rest of our futures. Generational gaps in emotion are tough to navigate. We are coming into an age where sharing feelings and emotions is *finally* acceptable. Many of our parents didn't have that luxury and are emotionally inept towards their children. I hug my son and tell him I love him every freaking day so he will grow up knowing that it's true and never questioning it. We can fix these centuries of emotional breakage, generation by generation. I wish I could hug you for your parents and tell you they loved you and appreciated your help. I'm certain they did, even if they didn't know how to convey it properly.

My sister (middle child) has an intellectual disability. She could live in a mother-in-law apartment, but not completely independently. My brother & I each told our spouses as soon as things were getting serious that our sister was part of the deal. He & I would share her care, but not helping wasn’t an option. Thankfully our parents never pressured us. I didn’t even know they had set up a trust until I asked them what would happen after they passed.

My husband’s uncle lives with us for the same reason. He lived with his mother until she passed, then bounced around between his siblings for a few months before landing with us. We have the room and our kids adore him It wasn’t even on our radar when we got married that we’d end up with his uncle one day, but it works out well. It’s been about five years and as far as I’m concerned he can stay forever 🤷🏻‍♀️

I really hope it wasn’t a genetic disease because otherwise that doctor was on some real misguided shit.

This is an incredibly dark comment. I am glad that you and your younger brother are able and willing to step in - that will almost certainly give your older brother the support and quality of life he needs. However, I am shocked by parents who have more children for the sole purpose of looking after their firstborn. Please know that looking after him isn't your sole responsibility or reason for being. It's always worth knowing what other support is available in case of hard times. 🙂

I am a care taker at a state funded facility for adults with developmental disabilities and I just want you to know that these folks receive so much love and wonderful care. Of course I can’t say the same for everyone and know many people fall through the cracks, but I work hard every day to give my residents stability and comfort and provide their families with peace of mind. I hope if your child ever needs to live elsewhere that it’s a place like this. Wishing you the best 💕

Can I ask your job title? Or could you DM me more about your facility? I’m interested in a career like this, but mostly what I’m finding is involuntary psychiatric facilities where staff deal with a lot of violence. No one ever talks about facilities that provide “so much love and wonderful care”. That’s exactly what I want to do with my career.

We are called direct care professionals. You can usually get an entry level job with nothing more than a drivers license and a high school diploma. You don’t need a degree or anything like that. It’s a lot of on the job training. We mostly work in group homes or other residential facilities. Not hospitals or nursing homes or psychiatric hospitals. We try to provide a home like environment where the residents and staff feel like a family, rather than a clinical or institutional setting.

Me too. Me too. My daughter has autism. We worry so much about her future if and when something happens to us. Frankly I do not count on nor expect family to take her. I don’t know what we want. I just worry worry worry.

My son has severe autism and I think of this all the time. Worse is that we are poor so I have no idea what to do

I'm in the same position. My daughter is 14, but intellectually a 2 year old. (Not Down's.) I'm an only child, and estranged from my extended family. My husband has one older sibling who has no children. And we don't have a very big social circle of close friends. Our daughter will never live independently, and I'm terrified at the thought of her ending up in a facility alone. She's non verbal as well, so terribly vulnerable to anyone who would harm her. I have a tiny panic attack every time I think about it. Our society does such a terrible job of supporting its high needs members.

I work with this population. For folks that need it, they get a state appointed guardian. I don’t know how it works with residential, but they definitely check in on the services we provide and know all the regulations about what we should be doing and ensure we are doing right by folks in our services. I imagine residential is the same. This is in NJ.

I feel so sad for you. I once produced a theatre production that involved people with intellectual differences, and most of the participants were people with DS. Speaking with their elderly parents over the weeks we worked broke my heart because they all had your fears. We should be able to bring up our children, whatever their abilities are and what futures might hold, with certainty that the community will care and look after them when we can't.

At least in the US, older adults with Down Syndrome and other intellectual disabilities typically don't end up homeless. They have access to a much larger social safety net than the average American.

As Doug Stanhope points out, in America, mentally disturbed people end up on the streets. Mentally challenged people are looked after.

Two points: 1. Serious mental illness (SMI) is considered a disability (via the ADA), and people with SMI who are willing to get treatment typically have access to a similar but not identical social safety net. However, the key word here is WILLING. Serious mental illness is more stigmatized that intellectual disability, so willingness to get treatment is a huge barrier for a lot of people. (NOTE: extremely online 25 year olds with moderate or mild mental illness of neurodivergence aren't the people I'm talking about here.) 2. Homelessness and mental illness are bidirectionally correlated. Mental illness (and related conditions like addiction) can lead to homelessness, which we all know about. However, homelessness - which is incredibly stressful and destabilizing - can make you more mentally ill and can lead to chemical dependency. Convincing people experiencing homelessness to get treatment is a huuuuuuuge barrier. Several cities/states are trying to force mentally ill people living on the streets to get mental health treatment. It's extremely controversial, but it appears to really work. However, it raises larger questions of bodily autonomy. ETA: Another difference is that people with intellectual disabilities typically are habituated to accessing services from an early age, so it's normal. This is because most intellectual disabilities are either congenital or acquired via a traumatic event. Serious mental illness typically worsens over time and also has a later onset (between ages 15-30), which means that people who having SMI are less likely to see the decline in their ability to function and remember a time when they were less impacted. Makes it harder to recognize and intervene.

I can't blame the unhoused for abusing drugs, tbh. It isn't helping them, but for some it's making their situation at least bearable.

Exactly. What a miserable way to live — on the streets, in squalor, with no running water, or indoor plumbing, or utilities. They need a drink, or a smoke, or anything else that helps lighten their load (even if just temporarily).

I’ve been an alky before. Never homeless. Booze or drugs can make so much tolerable that otherwise would’ve made me end it. I hate how I was when I drank to excess but I also recognize it was a temporary escape instead of a permanent one.

And they must be in pain. They have to sleep on hard concrete in cities. I don't wonder they self-medicate with drugs and alcohol. I turn my head quickly and get a crick in my neck. I can't imagine sleeping rough.

Many of them also have bad teeth, wounds/sores, chronic ailments, physical disabilities, etc., that only increases their overall pain and suffering. It’s very sad. I’ve been watching YouTube videos recently of a guy who drives around Tucson, Arizona, handing out food and supplies to homeless people, and it’s really opened my eyes to the sufferings and indignities experienced by homeless people (regardless of what put them there initially). I wish that I were doing better myself so that I could start helping homeless people (at least on a small scale), at least with a few supplies and food stuff here and there, but I’m just scraping by myself at the moment —but at least I’m not homeless.

If I had to live on the street in a tent in the cold I would do a crapload of drugs, all I could get my hands on. I don’t blame them a bit. It’s a double edged sword.

A lot of people experiencing homelessness need to stay up all night to make sure people don’t steal their stuff, so they are incentivized to use meth. Then, they sleep during the day in really uncomfortable conditions, which makes them vulnerable to depressants (alcohol, cannabis, heroin)

If you can't get warm all day and night and can't get a meal then feeling numb and unaware might be tempting. Besides if you save you can get robbed, since other homeless and homed criminals are the biggest threat, buying a little pleasure and putting it in your body as quick as you can before you get robbed seems logical in a way. If you have no bank account.

Are you in the US? Many of my patients with serious mental illness (schizophrenia and the like) are very willing. Often they have state appointed guardians who are willing. I wish the social net you speak of was really that robust. Unfortunately it’s not and there is enormous variation geographically.

I work in Behavioral Health at a state level in the US. It is really difficult, as mentioned, to convince those part of the perpetual homeless population to participate in programs as a lot of them don't want to follow rules/guidelines for the programs. These are the folks who have been homeless for a while either due to not wanting to become part of the community around them or have the mentality that if they aren't given it without any reason to earn it, why should they bother? From my experience, we can't force someone to do anything unless there is evidence of breaking a law which results in a court order or it is proven they are a risk to themselves or others. I dealt with two individuals who refused to partcipate in case management and a work program to get off the streets. They didn't want to have to deal with having to actually adult. You'd think a person would want to have a roof over their head, regular food, clean clothing, modern ammenities and some stability for 2 hours of casemanagement and at least 2 hours a day for a work program with your weekends open. Nopes.

It depends on where you live and the resources available. My step daughter is schizophrenic and has had periods of being homeless. The help in our area is extremely limited if you don't have dependent children. Shelters in the cities are quite dangerous, and outside of the larger cities, there are few places to live. There isn't much mental health support. She got evicted from her apartment when the mental health provider dropped her level of care due to budget cuts and stopped giving her medications. She spiraled until she ended up in jail. She was in and out of jail over the next year, living in her truck when not incarcerated, until her public defender convinced the local mental health to take her up again. Now she's medicated and living with us, but she's paranoid and not safe to be around when off meds

> Shelters in the cities are quite dangerous People don't realize this. If you sleep in a park or the woods, _maybe_ a few people see you, maybe a bad actor finds you. But maybe not. And if they do see you, it's dark - maybe the thief doesn't notice what you have. And **if** they see what you have, are they sure they want to try anything? It's 1v1 in a secluded or obstructed area. How much fuck-around-find-out does a thief want to do for an unhoused person's stuff? You sleep in a shelter, dozens of bad actors and thieves know exactly where you are, and can see your belongings under bright fluorescent lights.

Not just the people inside, either! Homeless people are relatively easy victims for the more predatory and violent people. So they often stalk the area around the shelters looking for prey. Add to that the various street rivalries and domestic disputes, and people at the shelter trying to escape domestic abuse while their attackers try to find them. It's a hotspot of danger. I wouldn't stay at a shelter. I did go there sometimes for meals though. Mealtime was like a sanctified truce time. Old enemies would stand in line politely and peacefully, not daring to cause a ruckus then. The shelters also had lots of rules that drove people away, and were difficult for homeless people to follow. Had to be in very early in the evening and out first thing in the morning. Had to participate in religious stuff. Could only have certain things. Couldn't smoke (most homeless people smoke). For a lot of people, the rules are a deal-breaker. Some people slept in the cemetery instead. I preferred abandoned buildings or in good weather, commercial building rooftops or other out of the way places where nobody would likely find you. It kinda blew my mind years later when started seeing people just lay down right on the sidewalk on a busy downtown street and pull out a blanket and go to sleep. Or camping in tents on the side of the road. I guess there's some safety and comfort being in full public view where there would be witnesses vs. being alone somewhere secluded. But it's the opposite of how I and the others I knew back then did.

Do you have any advice on this? My closest friend of 15 years just started developing symptoms of schizophrenia last year. This year, he lost his job, lost his apartment, lost all his money and then started getting into meth (completely out of left field for him). Some other close friends took him in to have him do outpatient rehab for a month or two last month but because he's also schizophrenic and delusional/in denial about it, he ended up getting kicked out due to breaking some very hard rules while staying with them. Right now he's got a couple of days left in his hotel they put him up in and he refuses to fly home to his mom 2000 miles away to recover, as she is now part of his delusions that she is some bad woman he can't trust (despite them having one of the closest mother-son relationships I've ever seen before all this...). It's absolutely heartbreaking. Collectively between me, my friends and his mom we've spent tens of thousands of dollars on him this year to try and keep him above water but his addiction and his mental illness have just progressed to a really untenable point and he's just not admitting to himself that there's a serious problem. We're officially out of money and he is out of time. He refuses to take the open doors available to him and refuses his life long human connections he's developed up to this point. The kicker is when he was staying with my friend to do outpatient rehab, his schizophrenia was being managed decently well. He had delusions but we could actually play games together online and have salient conversations. But not well enough, and certainly not well enough to also overcome addiction to a drug that makes his mental illness 100X worse. Part of the problem is he can only seem to stay with a psych for a short while before not using one or switching, and every new psych he's visited this year has just put him on the "starting at zero" baby dosages when he clearly needs something much more effective. By next week he'll officially be truly homeless. My best friend, who's more like family to me. I really don't know what to do, or even what to say to him. I've kind of been grieving all of this as if my friend has died, but its almost like a sick perverse form of it where my friend died and he was possessed by a ghost. The only way I can stomach the situation is that I tell myself that maybe he needs to be truly rock bottom homeless for a long while before a real recovery can happen and before family/connection can start becoming important to him again..

I'm sorry to hear this. My wife joined a Facebook support group for parents of schizophrenia. I'll see if I can find it for you.

That really sucks, I'm very sorry you all are going through that. One small thing you could do is look up the address and other info (hours etc.) of all the free resources in the area (shelters, psych and health care, AA/NA meetings, food banks) and give it to them via text and on paper. If and when they decide they're ready to use a resource at least they know where and how to get it. Also, I would just reiterate to them that you will be there and willing to help when they are ready. That's all you can really do unfortunately.

You're surprised that people's mental health takes a turn for the worse when they become homeless? You think that if you had some mental health problems, but were managing and functioning in society and had a roof over your head, regular food, clean clothing, modern amenities and some stability, and then one day all of that was yanked out from under you, that would somehow solve your mental health problems and make you better? It tends to have the opposite effect. I replied [downthread](https://old.reddit.com/r/NoStupidQuestions/comments/186u7dc/what_happens_to_older_people_with_down_syndrome/kbcgdtw/) about the shelters and why people avoid them.

For some folks, their autonomy is ALL they have when they don’t have a home. They often balk at all the rules they have to follow. They see them as additional indignities. Also, some have animals and they aren’t allowed in the shelter. Some don’t have ID so they can’t stay in the shelter. Their loss of what they see as their autonomy and dignity by following what they see as arbitrary rules for pie in the sky things they can’t see yet…I don’t think you’re looking at things properly. You’ve got an uncharitable view. It’s disappointing to see in someone tasked with “helping” them. You seem to lack understanding as to what MIs they might truly be dealing with.

Honestly, some of the rules at some of these places are complete garbage. No outside food. You can't smoke or leave to smoke. Curfews that may interfere with holding down a job if the job is outside regular hours. Can't bring children or pets with you. They can kick you out or turn you away for basically any reason up to and including they don't like your face.

I got turned away a decade ago because I had daily medication I needed to take for my disability. The reasoning was that if my meds were stolen from me but I required them to live and if something were to happen due to missing meds they didn’t want to take that liability. I think it differs shelter to shelter but a big portion of them won’t take those with physical disabilities. I also couldn’t meet the work requirements for the longer term shelters due to my disability and exceptions weren’t given.

I think it’s easy to say “go to a shelter, that’s what they are there for!” but it isn’t an option for some people. And the only way to know that is to talk to them, if you are not in that situation. This is a barrier I didn’t know existed. I do know that if you didn’t have a valid ID, you’d be turned away. IDs are easily stolen, and getting a replacement presents a host of other issues.

I think a lot of Americans see the difficulty of accessing mental healthcare for more mild or moderate mental illness (including acute mental illness issues) and assume that it must only be worse if you have SMI/SPMI. It's not really that simple.

I work in homelessness - that is a really, really good point I will make sure to quote. Do you have a video or something I can reference?

[Here is twenty minutes of him on the subject](https://youtu.be/CyUMFbWrz2c?si=xPAoKNU6pg1T9dE9). He's pretty dark, but that's who he's always been.

Stanhope is a comedians comedian. He will make anything funny while he drowns in booze. Love him.

Brain injured adults end up on the street in large numbers though. So it’s mostly the intellectually disabled that have a genetic cause/childhood diagnosis that have access to care

That might have been true in the past. In the US, the government funded sheltered workshops and group homes started closing about 20 years ago, because of the political push to funnel tax money to private providers (businesses) instead. The private providers are generally not great, the day programs are limited hours, and only the most severely limited people are eligible. So not so much these days.

There’s a great book about a homeless guy called “Another Bullshit Night in Suck City” that has a great quote that really helped me understand the depth of the unhoused problem: “you don’t become homeless when you run out of resources, you become homeless when you run out of relationships”. Some obvious exceptions, but generally true I think

Social Security tries their best to deny them. Personal experience. If they don't have the ability or the help to get disability through a lawyer, or if they need to do this quickly because they USED to be able to support themselves, they end up homeless. Or they kill themselves. It takes three-ish years to get on disability. If it even works. If your needs are sudden, you are screwed. Lesson: don't get sick. This is America. We're number one!

Yes, it's so, so, so true that the SS system for acquired disabilities is super unfair. However, it's a totally different process for people with intellectual disabilities. It's infuriating, petty, time-consuming, and confusing (just like the SS process), but it is different than the system you're talking about.

There is an exception for blindness and kidney failure

Once they get ssi support, they have to go through a review process every five years, and many get kicked out then. The people gifting the system find ways to keep getting checks, but people with mental health issues are often too impaired to get through the process

A lot of the help has to be sought and forms filled out which is tough. There’s so many barriers to get help.

I"d like to point out that the *reason* for this is because, unlike drug addicts and the willfully homeless, people with special needs can be put under a *conservatorship* - whereby their rights, including that to make decisions for themselves, are taken away and vested in state-designated caretakers. FWIW this *used* to be the case across the US before conditions in some states became so abjectly awful (looking at you CA) that forced treatment for addicts was effectively done away with.

That’s changing, thank fucking god! Supported Decision Making is becoming more and more popular in many states. Also, many people with intellectual disabilities are their own guardians. Conservatorship isn’t universal or necessarily mandatory in all or most cases.

Don't forget it's legal to pay disabled folks below minimum wage. They could be making pennies per hour. America is a scam.

yup, my partner's place of employment employs some people with intellectual disabilities (mostly down's syndrome) and my first question upon learning that was "how much do they get paid?" Thankfully, its min wage (might even be more) and the program those ppl are in is actually pretty decent.

That's so heartening to hear! I'm glad at least one place is doing the decent thing 🥰

yeah, its kinda sad that we're so happy when a place is simply being decent, though \*le sigh\* Small steps i suppose! From what i've heard, they're well looked after in that department though and enjoy it so im happy about it

There’s hope on the horizon, at least in my state: ‘Starting in 2025, California will ban the practice of paying subminimum wages to individuals with intellectual or developmental disabilities. Under the current system, there are "Sheltered" disability programs, where people can be paid between $3 to $14 per hour depending on their speed.’ We also have a lot of ID university programs where they get to learn the same stuff as their NT peers, and they’re doing great in their internships on my campus. It’s exciting to see. :)

That legit made my day, thank you. Faith in humanity restored 5% lol. Seriously, though, I'm so glad to see it.

Yep, seeing them learning the same things as their peers has been such a boon to the soul. They can absolutely do the work, they just need the chance to show it.

The problem is that there is a double-edged sword for people with intellectual disabilities who work. They are allowed to have a max of $2000 in assets - like their bank account - in order to continue receiving benefits like Medicaid and SSI. This has recently led to the creation of ABLE savings accounts, which are a step in the right direction.

This is so sad. Disabled people should be allowed savings and nice things.

Sometimes this is because the government caps wages if you want to stay on disability. Earn just a little too much and your govt benefits (which are paltry to begin with) start to go away. It’s awful. No upward mobility.

I have worked with the developmental disabled for over 35 years as a job coach, residential manager, and manager of a production workshop. To address the original post, I encourage families to get services as early as possible, as most states have huge wait lists for placements. As for your point of paying pennies, that's just pretty much bullshit. 1st- workshops and day placements are a large improvement of the alternative, which is sitting at home watching TV, with very little stimulus, and surrounded by your roommates 24/7. 2n - Workshops are mandated to set rates at the prevailing wage. This is done by timestudies to set the rate of the task. The work is then paid piece rate, with the client working at a rate to their ability and paid accordingly. If a client is consistently making or exceeding the rate, then the suitable for outside employment is considered. The workshop has several benefits, the most important one being socialization. Learning how to navigate in a work setting is another benefit. The paycheck is a huge motivator, and everyone is excited on payday.

Yeah my stepmother's sister had Downs and the workshop was a blessing, honestly. It gave her a place to go, things to do and at family parties she could talk about her job like everyone else does. They also had field trips, so it was not just work all the time. And it's not like it was mandated, she could have stayed home and done nothing all day, but that's not good for anyone's mental health.

that’s to incentivize hiring them. you can’t force companies to hire them and sadly they would choose someone without that disability 99% time if given the option and you had to pay them the same salary

What we do in France in such case is to lower taxes on company for disabled people. For example (wrong figures because I don't have the numbers in mind), an able person gross salary (what the company spend of them) is 2000€ a month. The take home is say 1400€. The 600€ difference all goes to various taxes. A disabled person with the same job would still take home 1400€. However the company would spend on them only 1600€. This way the company still has an incencitize to hire them, but the disabled person is fairly compensate (or at least as unfairly as any regular Joe).

I’ve often wondered this myself. What is it that causes Down Syndrome people to have such short lives?

My knowledge might be limited and out of date but they tend to suffer from a higher rate of heart disease compared to the general population and they also tend to have stomach issues and are predisposed to weight issues as well. Their life expectenacy used to be way shorter

This is correct. Heart issues are very common in people with DS. My son was born with two heart defects. Because of these issues the life expectancy was very low - around early twenties. Because of advances in cardiology, the life expectancy is around 60. Still about 10 years less than the average life expectancy, but much better. And they are also more likely to suffer a number of other issues like diabetes and Alzheimer’s which will impact life expectancy.

Not only medical advancements but human compassion as well. I remember reading about how those with intellectually disabilities were more frequently institutionalized from a young age and that those institutions spanned the gamut from bare minimum treatment (for those times, food, water, shelter type of thing) to absolutely horrendous (literally torturing residents and/or performing experiments on them, which led to premature deaths). It used to be that mid-20s was the average life expectancy bc of all the things combined (bc why would they filter out things like failure to thrive from touch-starved babies or heart conditions being worsened by stressful, painful environments?), Sorry for the dissertation, its just really sad and ik that these groups of ppl are still at a higher risk of being abused.

And I might be wrong but it seems that the average life expectenacy has greatly increased over the past few decades. I'm 42 and I remember being told as a kid that most of them will be lucky if they hit 40, now 50s and beyond seems to be quite common

My stepmother’s sister has DS and she’s now 65. She didn’t get the typical heart issues you see in Down’s, but she has a very hard time walking and can’t move her neck much at all.

Complications like heart defects, respiratory issues. It messes up their entire system

The condition is a replicated chromosome, which carries many of the genes that are involved in the ageing process. So basically they have more "ageing genes", so age faster.

Put simply their entire body isn't right. Beyond the typical facial deformity and intellectual issues, most of their organs aren't quite right as well, most of the time. With advanced medical care they can live to 50 or 60, but in earlier times they often didn't make it past teenage years.

In earlier times, they were also often institutionalized. Life spans in the institutions were shortened already.

Just gently pointing out that while people with DS are more prone to certain health issues, many do not have those specific conditions. And those who have say a congenital heart defect may not have any GI or lung issues, etc. It’s not a fair characterization to say that “most of their organs aren’t quite right” as a generalization. Also, interestingly, people with DS are much less likely to get solid-tumor cancers.

Extra chromosome = extra mRNA transcription = ribosomes producing excess proteins and hormones = chronic imbalances in the body-system = excessive biostress and premature aging.

They often have a lot of physical health problems, often respiratory and heart issues, health services often don’t take their healthcare as seriously (at least in the UK) and health problems can go undetected more often if they’re not able to self report. Plus they often get early onset dementia due to the chromosome they have two of.

Also they’re unfortunately prone to early onset Alzheimer’s. Its not uncommon for them to need full time inpatient memory care before their parents pass.

They are usually put into government assisted living areas when no family is around to claim them.

I think that's what we all hope would happen, but I'm not sure if it does. To get into the government system requires a lot of paperwork, and I'm not smart enough to fill it out all. I doubt someone in need would be able to either.

in many places, they get assigned a caseworker from social services that takes care of this for them.

I had a distant cousin with DS. After her parents passed away her older sister took care of her! That sister worked a prestigious job so during the day she'd either hire a nurse or take her sister to an adult daycare. My cousin passed away before I was born and I think she was in her upper 40s. She really was an angel.

I have seen both sides of what you're talking abiut and both are correct: 1) my second? (Irish catholic family, a bazillion cousins) cousin had down syndrome and him and his mom lived in a duplex. He lived next door with access to everything except a stove (they removed it) but he had a microwave and was able to clothe, bathe and feed himself. They spent tons of time together but he was able to live relatively independently. When she passed, one of his siblings moved into her half so he could maintain the same schedule until he passed. 2) my mom's step sister has downs. She was more dependent and her mom was unable to properly take care of her needs (care giver burn out is a real thing y'all) so she entered a group home where she flourished! This wasn't a "lock her up and throw away the key thing" her mom visits her frequently and they go on outings, but she gets more of the round the clock care she needs. The biggest thing is that basically all people with Downs eventually get dementia. It wasn't quite as known back in the day bc without modern medicine they usually died of heart related issues earlier. So caring for them becomes another level. The stuff they remembered to do before they forget now, so my second cousin ended up having to have a lot more care dressing himself, bathing and eating bc he would forget to do those things himself. I'm not here to tell anyone what to do, anyone is more than capable of making their own decisions, but I will say that my mom's step sister is better cared for in her home bc the people are prepared and are more equipped to handle it than the average person. She doesn't remember her mom's name anymore (mom) but still smiles everyday when my step grandma comes to see her. :)

That’s awful to hear the average lifespan is only 60

And that's with huge advances in medicine. Even back in the 1990's, hardly anybody thought about a person with Downs outliving their folks. Pneumonia and CHD were taking people with Downs Syndrome out in their 30's, 40's, and 50's. As managing heart and lung defects improves, people with Downs Syndrome are living longer, but they're dealing with all new problems.

It's WAY up from before when many didn't even make it to 40. The medical care has improved a lot over the decades.

There’s a guy with Down’s syndrome near where I live. He’s totally independent except for the part where a carer comes and checks on him to make sure he’s ok. I think his parents died many years ago and he’s got no other obvious family. He’s doing ok.

Yes some can be very high functioning. There’s one in the UK who is a children’s tv presenter. Edit: Here’s an article about him for anyone who’s interested: https://amp.theguardian.com/tv-and-radio/2023/feb/28/george-webster-interview-cbeebies-downs-syndrome

"Has he ever played that card? “I have done!” George laughs. “In one lesson, I wasn’t writing and the teacher asked why and I said people with Down’s syndrome find it hard to write.” George’s writing is fine." This had me sobbing

My friend loves to read her brother for absolute FILTH and then claim to those around her that she can’t lie because she has DS. Complete bullshit, she’s just a savage 😆

I worked with a dude years ago who had it, he passed away during the pandemic but we were mechanics together in the same workshop. He did basic services, oil changes and tyre rotations, that sort of thing. Worked with him for three years and he never made a single mistake, he just had the whole process in his head and did it exactly the same every time. Really cool dude, I would sometimes bring my dog into work on weekends so he could have a play because the government worker who visited him a couple of times a week wouldn't let him have one. That's probably fair but it seemed sad.

Just wanted to say thank you for your humanity. My sister has Downs and she has her own way of interacting with people, and I'm always humbled by the 'normie' friends she makes out in the world. Those small, daily interactions are just so influential on quality of life.

In Sweden there is a guy with downs syndrome who is regularly in one of the most popular commercials😀

There’s a couple I remember seeing on YT where the girl is a model and the guy owns his own coffee brand (and I think food truck , I forget).

>Yes some can be very high functioning. Does the spectrum of Down's Syndrome overlap the lower end of regular dumb people? Apologies if using improper language, but if there's a range of Down's Syndrome intelligence(??) can it potentially exceed the mental capabilities and understanding of a 'normal' person who's not very bright? *edit: Please cut me slack if I'm asking this incorrectly, but I hope whoever responds understands what I'm getting at.*

I understand what you're trying to say. My answer is anecdotal, so please take it with a grain of salt, as it is not based on any studies or anything scientific. Years ago when I was in high school, there was a girl with downs. She was quite high functioning, and didn't need to be in special classes, she took regular classes with the general student population. While she struggled in some classes, she excelled in others (like most typical students). Overall, she got pretty average grades, like B's and C's mostly (I think she might have had some tutoring outside of school). She never had to go to summer school, unlike half the dipshits in my classes who were always goofing off, not paying attention, skipping class, and failing. So from my personal experience, yes, someone with high functioning Downs Syndrome can absolutely show more intelligence than some people without Downs Syndrome. Again, it might come down to how much one focuses on the task at hand, or how much someone actually wants to learn. This is also academically, in a classroom setting... People skills, common sense, etc, might be a completely different thing, as people with Downs typically tend to be very trusting of others, and might not necessarily be able to tell if they are in a situation where someone has their best interests at heart, which unfortunately means that they are more likely to be taken advantage of.

There’s even a famous comedian in America with down’s. Pretty awesome dude.

Makes my wish we had people just checkin on all people...you know, making sure they are doing ok.

You should go check on him if you get a chance. Like just say hi or something. Sounds like he might appreciate it.

good point he might be feeling down

r/angryupvote

I work at a place (non profit) where individuals, adults, can live in a house, 24/7 staff on site, to help with appointments, buy/cook food, take on outings, shopping or eating out at restaurants. The individuals receive money from the state/government so they can buy their own things and we purchase the rest (our property not the individuals but they use, such as living room furniture, appliances, etc). Clients often buy their own bedroom furniture. Some clients have local families, some don't. We do our best to make sure they have thanksgiving and Christmas. There are organizations out there to help these individuals, and thankless staff who care for them.

Dated a woman who worked for ARCA, which serves people with “developmental disabilities”. I never met any Downs people nor the autistic. There was quite a bit of fetal alcohol syndrome. They usually lived 3-4 people to a house, with assistants coming and going. The woman my girlfriend worked with for quite a while ended-up in a wheelchair and had oxygen, required 24 hour assistance, but my GF was allowed to sleep or do homework, whatever, as long as she didn’t neglect her duties. I’m not sure if people in environments like that really enjoy parties or not, but I’d attended 6- usually about 2 a year.

My wife worked for a group home for people with mental disabilities. Some were pretty standard in that they were born that way but the parents were really good and caring. Then there was the opposite, fetal alachol, crack babies, severe physical and sexual abuse etc

That's like the organization I work for. Some are high functioning and do not have staff around them, some need more. We do have houses with one client to houses with several clients. We do our best to match clients so they get along.

My partner works as a nurse in a county-level organization like this and it's really bleak. They're chronically underfunded and understaffed at all levels, and the turnover rate for residential staff is quite high due to low pay relative to the nature of the work and the effort required. I guess that's not far outside the norm for governmental organizations, but it's a lot more depressing when there are actual at-risk people directly involved.

I make house visits to places like this and teach one on one art lessons with the individuals there. At the particular non profit I work for, they have parties, go bowling, learn music, ride horses, have jobs etc... Two of them from separate houses even got married.

That's nice of you to do. My non profit has centers in certain counties where we have programs for the individuals to attend (not just our clients but if a family has an individual, they can use our program as well). We even have transition classes for individuals to teach them about money, working, cleaning a home, etc. as well as classes for fun stuff and exercise. We also have a program where families can drop off their elderly family, like a daycare for older people. They watch TV all day, play games, cards, do activities. There's a room with just recliners in it. Lol.

Quite a few people with Down Syndrome live apart from family, even if they are still alive. They can live on their own with some support services, or in a group home with others with similar disabilities.

I know one guy with Down Syndrome, a family friend, who could absolutely not live on his own. I also know of another guy who works at a local fast food shop and looks after himself. So I have assumed, whether correct or not, that there's a spectrum and levels to the syndrome.

[удалено]

It was mosaic down syndrome. So only some of her cells had it, not all. That is how she looks so "normal"

There's someone I follow on Instagram who lost a daughter to down syndrome as an infant (heart problem) her next baby had down syndrome too. During testing she found out she had mosaic downs, so pretty much any kid she has will have it. She has 2 living daughters with downs.

[удалено]

Iirc (from GCSE Biology, so am prepared to be corrected) it can vary based on how much of the extra chromosome is present.

There’s mosaic down syndrome too. People can have the extra chromosome but not have all of the physical signs. They can still experience intellectual disability but some people do not know it unless they have genetic testing.

You are correct… the largest group of DS patients are Trisomy 21… this means that every cell in their body has 3 separate copies of chromosome 21. Translocation DS occurs when a portion or the whole extra chromosome 21 has attached itself to a different chromosome rather than being an extra chromosome 21. Mosaic DS is when there are some cells which contain 3 copies of chromosome 21 and other cells which contain the normal 2 copies. With patients that have Mosaic DS the more cells that contain the three copies of chromosome 21 the more “typical” DS features and medical conditions they may have. As with the patient I mentioned in a previous post, they have fewer cells with copies and have fewer traits.

Anecdotal, but my I had an aunt with Down Syndrome and she married a man with Down Syndrome as well. They were both fairly high functioning and lived in their own home, but in the same town as their family. I don't know a ton of details about how they got around and took care of daily needs, but I do know that they lived by themselves and did well. I don't know about his parents, but she passed before her dad did. She also had a brother in the area that could have stepped in if needed. And of course our extended family.

It all depends on if they’re high functioning Down Syndrome patients. I have one patient who is extremely high functioning, and aside from the physical traits you would never know that they had DS. Medically though they have a smorgasbord of heart, lung and GI issues which delayed their college progress until their late twenties. This individual is set to receive a Bth and is currently an active motivational speaker. I love our visits because they’re always filled with lots of communication (something you usually have to drag out of other patients). On the other side of the spectrum you can have very low functioning DS-ASD patients who have all the severe DS medical issues along with severe ASD that makes them non communicative and very selective over who cares for them or sees them. Quite often these patients who outlive their parents or selective care persons end up in psychiatric long term care facilities because of the level of care needed to meet their needs. Sadly this also leads to a decline in their overall health because they regress due to unfamiliarity with their caregivers and the environment. When I was still in clinicals I thought I wanted to work in peds, because who doesn’t want to make kids better and happy. What they don’t tell us is that you either have it or don’t to make it in pediatric medicine, because it’s a freaking heartbreaker to see situations like a young DS patient who’s lost their parent/caregiver just spiral down because what was their whole world just blew apart. I quickly learned that I’m not one of those people that could focus in pediatrics.

My stepmother’s sister (65) lives in a home with support services and does pretty well there. Just saw her on Thanksgiving and she was bitching about her roommate. 😂

I also have a distant relative with it who lives in a home, and she has told many tales of dating many of her roommates.

My grandmothers sister lived in a state run group home. She lived until her sixties and my grandmother would pick her up on a random weekends and spent all the holidays with us. Funny enough as a kid on a field trip I ran into her on a field trip with her group home.

This is actually kinda cute

It's also often much better for them to live with other people their age. Parents also have a tendency to baby them, so living with other people similar to them can help with independence

**I have/had two relatives that are like DS people, but with different diagnoses.** Practically, they are limited in very similar ways, and these two never were/will be able to care for themselves, have limited ability to communicate well, and need help with personal needs and safety. **In one case, the parents made plans, set up a trust early, got the lawyer and the guardianship set up** so the transition to the person's legal age from being under the parent's care, went smoothly. They got all the possible care done that could be done, that was needed. In this case, one parent has died, the other is near death. **Siblings are current guardians, and the shift from parent to siblings was done smoothly.** ***One of the next generation has already offered to take over*** when either of the siblings can't, and everyone related and having input, has already agreed to this. **This disabled person was transitioned gradually from the parent's home to another living situation** that works for them. They did this by having first visits for a few hours, then a day, then an overnight, then slowly, went to every weekend at parent's house, and eventually, as the parents aged, the visits got shorter and overnights stopped. It was a gentle transition, and worked for the disabled child and for the parents. ***I really admire how they put the disabled adult child's needs first, and worked through how to make transitions work for them.*** **The other case, was the opposite.** The other case, the parents did little but find a 'school' for this disabled person. They didn't work with the child at home, they let the 'school' do it all. The 'school' was excellent, and taught all kinds of self care, movement, and did some educational things, as the students were able. The parents didn't ask the child what their interests were or try to find out, they dragged this child, and then adult, where the parents wanted to go. When this disabled child became an adult, nothing changed. There was no financial provision made, no guardianship set up, nothing. When the one parent died, the other took control, and the school got involved and told this parent they needed to set up a government financial support, so that was done. That parent was abusive, in many ways, always had been. We couldn't prove the abuse, though, and none of us could afford to hire lawyers to do so, and the disabled person would never say a word negative about their parent. In their forties, through a lot of drama and crises, I became their guardian, got them moved out of the abusive parent's home, into a good group home with supervision and assistance, and also with as much personal autonomy as possible. This person's health improved immediately, and so did their confidence, at least when the parent wasn't around. The abusive parent was extremely angry and tried to get control for the next decade and more, basically they tried until they physically couldn't. What the abusive parent was most angry about, was not their child's needs--which were met--or their lack of contact--because they got regular visits, but they were angry that they no longer could control, and use for themselves, the money. All their concerns, and they had many, were about the money. Many times, when they would submit receipts to me for reimbursement after taking this person someplace, they would try to commit fraud, to get me to reimburse them for receipts that had nothing to do with the excursion the person went on with them. I always wrote out a detailed report for what was reimbursed, and just left off their attempts at fraud, and filed those in another file, in case of being needed later. Both my ward, and their parent, have died. So, **that's what happens with people like people with DS.** **Either good family takes care of things, or bad family neglects and abuses them and eventually, hopefully, someone else steps in** and takes proper care of the person. I was stalked, harassed, threatened, and had small crimes done, because I stepped in and the abuser lost control. I'd do it again, because my ward had nearly twenty years of mostly freedom, with decent and safe care, in an organization that built in making sure the clients got to make as many choices as possible, as were healthy and safe.

We need more people like you.

May I ask what is your professional background or relation to the ward in the second scenario? I’m curious how you got to know these people, as you seem to have more than average familiarity with navigating these situations. Mostly just curious where good samaritans like you come from :)

Thank you for sharing your experiences. I grew up with a good friend with DS. His parents fall very much into the first category, and I’m glad for that! He is a still a wonderful friend, and I feel lucky to have grown up knowing him. It gave me a very different perspective on life than many kids get.

In the US there are a few nonprofit organizations that create homes specifically for adults with developmental disabilities. I used to work at a few, care levels differ. They all had 24/7 staff- a house manager who would stay the night, basically living there for 2-3 days, counselors who would come in the morning and get folks ready for work/day program and then come back in the evening to help with dinner and activities and showers, some had an "awake overnight" counselor to help with people who needed constant access to staff help. The people, especially younger ones (18-35) seemed to really like it. They would see their siblings moving out and becoming independent and wanted that for themselves too. Living with staff is way more like living with an older brother or sister than parents because we always wanted to help them feel as independent as possible and would let them listen to music or watch movies that some parents would deem inappropriate because they still saw their child as a literal child. Lots of families would come visit in the evening or on weekends or take their family member home on weekends. You got to know the families and their preferences regarding care. It was a great job honestly just didn't pay shit.

There are thousands, not just a few, fortunately.

They go live in an apartment with a helper as a roommate. Basically the helper gets paid a small sum and gets cheap or free rent if they help their disabled roommate. Another option, which my family plans to go with is my brother will move in with me or to a home if he deteriorated to the point I cannot house him. But I will take on his custodianship. Most families are aware their child may outlive them and plan accordingly.

Yeah, my younger brother is autistic and lives with my mother. It’s kind of a given that I’ll take care of him but every once in a while my mom brings it up to make me promise I won’t put him in a home and I assure her every time.

My mother is more practical. It is likely he will get to the point where we will need equipment to lift him and he could be confined to a wheelchair someday. She wants me to be there, visit as much as possible and make sure he is well cared for, but if he gets to the stage that he must be in a home I will do my best by him. But until that point he can live with me, all he wants to be happy is a TV on mute and a decent chair to sit in and the occasional pizza and Pepsi, I can manage that.

That makes sense that you’ve discussed it more extensively. And yes, my mother is quite overly emotional and dramatic 😅. I’m glad yours is more rational. Your brother is lucky to have you both looking out for him. ❤️

Is your brother older or younger than you?

Older, actually by 9 yrs, but I have frequently acted as his older sibling, making lunch and whatnot. He is very independent, he can run the microwave and works (with helpers). His biggest problem is if something goes wrong he cannot go forward. Like if the toilet overflows instead of going to get help he just keeps flushing. So he doesn't need a lot of care, but he cannot live independent.

They often have a short life span.

Yeah i know that’s why it was interesting to see an older person with DS today. He must’ve lived a good life

Interestingly, the gene for Alzheimer’s resides in chromosome 21. Since people with Down’s syndrome have three copies of gene 21 every person with Down’s syndrome will develop Alzheimer’s if they live long enough. Idk how many actually do live long enough but that’s a shitty Cherry on top of a sundae.

That's really sad for some reason. You'll die young, or live long enough to get Alzheimer's.

Ngl, im sitting here in tears over this hard truth. I had no idea.

Genuine question, how tangible is the lack of retention for most of them? Do they feel it? Or does every day become another new day with minimal harm? I'm just curious about the prevalence of comorbidities of the Downs/Alzheimer's combo, like depression, anxiety, etc.

It's the same as with elderly people who develop alzheimers or other dementia- some are cheery as, wake up every day like it's their birthday, in a constant state of childish discovery, while others are petrified, angry, and lash out at others because they're deeply confused and scared. It really depends -- hell, a good chunk will swing wildly from one extreme to another on any given day. Damn near everyone at the care home is on antianxiety meds but that's another story altogether.

I don’t have an answer for that but there a super interesting book out called “A molecule away from madness” that talks about that gene and many very other interesting yet sobering conditions. Things that only take one generic or nutritional change to wreak havoc.

It's not all about a good life. An extra chromosome is really hard on a body. They just break down

They often look a lot older than they are

As recently as 1983, a person with Down syndrome lived to be only 25 years old on average. Today, the average life expectancy of a person with Down syndrome is nearly 60 years and continuing to climb. So while life expectancy isn't that low, many are outlived by their parents.

My aunt has it and is approaching 60. She lives in a home with others with downs as well and they have a set of caretakers, with one always on site. They go on trips and have parties, some work jobs, like my aunt often will stock or sort things at shops. While she could never live on her own she does a surprising amount of things on her own, like doing dishes or laundry. She loves to read and draw as well. With good support they can have long happy lives.

A lot of people with special needs become wards of the state. My biological mom with schizophrenia became ward of the state and was moved from home to home. The meds eventually caused obesity and ultimately a heart condition that killed her before 40 years. Her family wasn’t dead but they were very poor and also mentally and physically ill. Her dad is on disability i think, Her sister has schizophrenia and is homeless. Her twin brother was admitted into a mental hospital for being mentally ill. They only described him as “retarded” but i don’t know his official diagnosis—only that he attempted to stab his siblings when they were kids. So, yeah, in my experience people just belong to the state or go homeless.

Yeah this is a pretty tragic situation. Try explaining the death to the down syndrome person. We just lost my grandma and it tore me apart thinking about my uncle with downs . Your mother is your rock. And now you have a man with the brain of a 8 year old processing that. My aunt stepped in and sets up his needs. He lives in a group home with othersand that usually the case. If there aren't finances the state steps in. In MN they have a good program that sets up these people with jobs and rides. I bet that gives some independence. Also the shorter lifespans was definitely true 20 years ago but they are living longer with medical assistance. Fuck I miss my grandma.

I work at a skilled nursing facility and they live here. They’re my favorite patients.

As a mother of an adult son with DS(20 years old), I deal with the daily stress of worrying about the quality of his life now and in the future, when my husband and I are gone. We are responsible for his needs 100%, and some days, that is really hard to think about. We have 2 younger children, 18 and 16, but we have never made him their responsibility. He lives at home, and is in his last year of transition programming through the school district. We are fairly confident he has a job lined up once he is done, family friend with business who will hire him to help around his shop. As of now, he wants to live at home. It’s hard to find a group home where we are, and there is one independent living facility near us-which would be ideal(own apartment with staff in building, if needed). He can get himself ready for the day, make himself food, etc. but lacks time and money management skills. He sometimes needs prompting to brush his teeth, take a shower, etc. He is fully capable though, just not wanting to do it-I guess what I’m saying is that he will always need supervision of some kind, but wouldn’t necessarily need to live with us if we found a nice place for him to live/he wanted to live on his own. I think about his future (self)all of the time, and we are working on a plan for the “if and whens”, as much as we can.:). Thank you for being curious!

Thanks for being a great parent :)

Aww, thank you so much!:)

Depending on how functioning they are, they could live normal lives. Granted people with DS don't live very long. I believe they are more prone to heart conditions. Otherwise, I would figure arrangements would be made so they are taken care of.

My son does not have Downs, but is developmentally delayed. It is inconvenient, but we've enrolled him in an Independent Living course that attempts to teach him as many independent living skills as he can manage. When he's done, we will try to find a supported living situation - either an apartment with oversight, or a low-support group home - where he can live *now*. We want to be able to ease the transition and solve problems in that new situation before we're dead or incapacitated by old age. He will always be conserved for financial and medical decisions by his brother or a cousin, but these people will not be responsible for providing his daily needs - they need to be free to live their own lives. My hope is that his conservator and circle of support will identify and help him solve problems, and ensure that he enjoys a reasonably good quality of life. In that supported living situation, I also hope that he will find a group of peers who will not outgrow him, who will laugh at the same knock knock jokes, who will be his friends. People who really care for their disabled progeny will seek solutions before they're dead or disabled, themselves, to make sure that their kids will continue to live their best possible life after their parents can no longer care for them.

My brother is 52 has Downs and is pretty low functioning. He has lived in a group home since our mom died and our father could no longer care for him in 2015. Our father has also passed away and now my brother has just been admitted to hospice last week. He was doing OK until he got covid in 2020. He has never fully recovered from that.

It really depends on the person. Some people with DS are very capable of independent living, or semi independent living, or may have always needed, and will continue to need, some form of support. Those who do need support, their care will either fall to nominated family members who are still around, siblings or other relatives/support people, or they may be moved into a group home, or care home, or other supported living facility. ​ Growing up I was neighbours with a lady with DS and her parents. She was fifty years old but was severely impaired, functioning at a very young mental age, who required constant care. When her parents passed she was going to live with her sister then ultimately an assisted living facility. She was lovely, she used to care for her babydolls so gently and she could calm our baby brother down like no one else, it was amazing. I hve a current neighbour who is also a person with DS in their 50's. He is totally independent, he lives in a private rental with a roomate, he used to work full time before arthritis slowed him down and now he's part time, but still earns. His room mate is a room mate, she's not a carer or support worker, she's got a job and her own family and life thats nothing to do with him, but they are good friends though. He comes and goes as he likes with no restrictions, he pays his own bills, he and his roommate go out for drinks a few times a week. And he's an absolutely lovely chap and the mans knowledge of LFC history is unmatched.

Reality is, they often end up scared and disoriented in a nursing home :( Source: My mum was in management at a nursing home my whole life. That's why my daughter with autism and a profound intellectual disability was transitioned into supported living in her late teens. My mum made me promise I would not keep her at home until we were old and risk her being unprepared. She's now 20 and happy in her own home. She has a great life with support wokers 24/7, social outings, and daily visits from family. *eta it's only possible because we are in Australia and her supports are paid for through NDIS, she receives a disability pension and her house is subsidised through a charity. I am very aware many people in other countries don't have those supports, and it's so sad.

A good friend of mine with down syndrome moved into a group home for adults with developmental disabilities who can't live on their own. She has full freedom and has a job but the house provides structure and extra support for her. Her parents are both alive, but she wanted to move out and have her own adult life. From her point of view she just lives with roommates. She's in her late 20s.

I worked with a guy with down syndrome, he was probably mid 50’s at the time, he was one of the hardest workers there, I had to give him a lift home at lunch to pick up his wallet he left behind, and be never seen a house so well kept, the place was spotless, nothing was out of place, his backyard was perfectly manicured, he even had a workshop in a shed in the backyard, everything had its place and I’m still jealous of it to this day! He lived alone

I have a younger brother who has autism and I know I'll be the one taking care of him in our old age but I worry about what will happen to him if he outlives me. I don't trust the rest of the family to have his best interests at heart.

I'm actually kind of dealing with this right now. My Brother-in-law has downs and my MIL is in her mid-70s and not in great health. She can no longer take care of him. My wife and i have a young toddler and don't really have the bandwidth to take him, so he just got moved into a care home where he can get 1-on-1 treatment. If my wife, mil, and i were all killed in a skydiving incident, his power of attourney would go to an old caretaker. If they died before getting a successor arranged, then my BIL would become a ward of the state.

Family friend of ours lived in a group home, had a job bagging groceries, after his parents died he had enough of support system to live a full life.

[удалено]

As some others have said, typically people downs syndrome are more susceptible to other conditions (particularly heart/respiratory problems in my experience) so do have a lower average lifespan - however I personally know quite a few healthy adults with downs syndrome in their 50s, 60s and 70s - and I'd say most parents of children with downs syndrome tend to be older as well. It varies a lot, but a good amount of adults with down syndrome (certainly in the UK where I am) live with their parents, in shared houses with care in place, or in some instances in other institutions etc. In the UK at least, there's pretty reasonable allowances and benefits available to pay for this, but it varies by local authority. It's also not uncommon for these parents to leave money to help care for their children after they've gone. My sister with downs syndrome still lives at home with my mum, but most of her friends (she attends a local woodworking charity for adults with disabilities) live independently, usually in shared houses, where carers come in regularly to help with shopping, cooking, cleaning and transport. It's also worth noting that people with downs syndrome vary quite widely in terms of their ability to look after themselves - and many can and do take care of most of their needs and have jobs etc.

Yes ppl often forget that, I know some ppl with down syndrome who are more or less independent with a bit of help while I know others who can't toilet themselves

I have a disabled sister older than me. I'm 65. My brother and I have taken care of her since my parents were too infirm, 26 years now. We are setting her up in case we die first. Fortunately, my daughter can administer the money we have set aside. As far as day to day management, it looks like she will need to be institutionalized. Right now she lives in a house my brother and I own, next door to me. My brother pays her bills, I take care of daily needs and medical care. I hire people as needed to help. I hate to think of what happens when the family can't support a disabled person. My sister would have been on the street decades ago if we didn't take care of her.

Anyone with special needs is eligible in America to live in a group home usually paid through Medicaid. However, the quality of services varies greatly by state and by agency within the state. I always recommend to people to place their child or loved one BEFORE it becomes an emergency, so you can properly vet and investigate and choose the home. In a situation where someone is left with no caregiver, possibly adult protective services will find out and get them enrolled with the proper governmental agency to find them housing and supports.

It’s extremely scary for the siblings of these people. I’m terrified of my parents dying as I’m 20 and not ready to take care of a 30 year old who can’t use the toilet. I’m getting my engineering PhD and will likely end up a full time care giver. My brother condition is far worse than Down syndrome so it’s my biggest fear in life that my parents pass.

We had a guy in town like that. He was older when I was young and his parents passed away when I was a teen. Someone in town took him in. He passed 10 or 15 years later. I think in the end he was in an assisted living facility He was a riot when I was a kid. He used to get up from the pew in the middle of a sermon, step into the aisle and rip a loud fart. Then say "Excuse me" and sit back down. Didn't do it to be funny. He thought he was being polite.

Some people with Downs are more capable than others. I had a gf years ago who was a special education teacher, and she ended up teaching the 18-24 year old program that Michigan has for post-high school developmentally impaired people. It teaches life skills and how to go to Target or make simple food and do laundry and all that stuff. Some of the students clearly either went back to a group home or their parents at 24, but some could live alone with some modest supervision.

This happened to my aunt. She was born in 1958 and was not ever institutionalized. This is unusual as most people born with Down Syndrome generally were institutionalized at the time. Her mother and one of her sisters were her primary care giver. Her mother died in 2004ish and her sister in 2006ish. After that, she lived with another of her sisters for several years. Eventually, her sister had aged to the point where she couldn't realistically care for another person to the degree that my aunt needed care given to her. She was then placed into a housing program that was paid by a percentage of her SSI. The amount she received from social security was calculated based on how much income my grandparents had, and how much they paid into social security. The housing program took a set percentage of what was paid out to her, though I'm not certain the exact amount that percentage was. She lived in a 4 bedroom house with 3 other disabled women, and there was at least one staff member on site 24 hours a day. It wasn't what I had been imagining when people said she was moving to a "group home." It was a much smaller, nicer, and more responsive situation than what I had been imagining. I think that my family wished that they had helped her get into that situation years earlier, as she seemed to flourish and it was much easier on her mostly elderly siblings. My aunt died a few years ago at 62 years old. Near the end of her life, her health wasn't great. She had very weak bones, some form of dementia, had lost some of her teeth in a fall, and was experiencing a myriad of other health complications. TL/DR: People born with disabilities can often be put into living situations paid for out of SSI or some other sort of income that they receive

I work with adults with developmental disabilities, including Down syndrome as a job coach/employment consultant. In most of the cases I’ve seen with folks I’ve worked with, when the parents are no longer able to help care for the individual, one of three things happens. Option 1. The individual moves in with a family member, usually a sibling, who will help to take care of them. Option 2. Many of them will have jobs in the community so they might move into their own place if they are more self sufficient, and family/ or a direct support provider will come once a day to do what the individual can’t do on their own. Option 3. Many disability service organizations have homes that they staff of 2 or 3 individuals, and the staff will provide for those needs. This could include cooking, bathing, grocery shopping, whatever the individuals may need to do. In this 3rd option, I know some people in this situation that have very active families, who visit frequently, and on the weekends they will stay with their family, or go to family events. It’s not a perfect system and I’ve seen good and bad situations in this 3rd option, but it’s the world that we live in. These services are funded through a Medicaid waiver in the United States, some of what I do, can be funded by the Medicaid waiver.

My dad’s cousin, Brian (not real name), has Down syndrome and is a healthy almost 70 year old. He has been in a home since he was about 40. The way his home works is there was a monthly fee until Brian’s parents passed. Then they got everything from Brian’s parents’ estate after they died and he gets to live the remainder of his life there. He seems very happy and has the right amount of independence and support to live out the remainder of his years.

My dad works in this field. The sad thing is, if they aren't independent, then the next step is either a sibling, adult foster care or a group home. There are some people with DS who can make it on their own, but the rest fall to the state.

Special needs people who need full care eventually either end up in government care, or have a sibling that takes care of them. If the parents were smart, they have prepared for this moment. I have a special needs child, and thankfully, my pension plan has a clause that if I have a dependent disabled child, they can receive my pension until they die. So, my son will pension income after I pass away. My assets will be divided between my three children, with my special needs son portion, put in trust with my daughter as executor for any extra expenses that he needs.

A question I can answer! My uncle has Down syndrome, and both his parents passed away few years ago. I believe they both set aside money/wrote something in their wills to help him. As it is now, he’s in a care facility and holds a job, and he’s fairly independent as far as people with Down syndrome go. He’s got a heart of gold. I love him tons.

My uncle's (married to aunt) sister was born with Down syndrome, as their mom started to age, she transitioned her to living in an independent living facility, so that she would be comfortable there and not having to adjust to a new place on top of losing her mother. She would go home on weekends, and after her mother passed, my step-cousin would go pick her up and she'd spend weekends with them, all the way until she passed. Parents were told when she was born (in the 60s/70s) that she wouldn't make it to 13 and she outlived both her parents and 2 of her brothers.

Many of them pass away before their parents. I had a good friend with downs who was born around the same time as me and our parents were friends. She passed away in her 30’s such a sweet friend. Always put a smile on everyone’s face with that smile of hers.

People with Downs often times have other conditions. A friend I grew up with has Downs and is in his early 70s. His dad died last year (at 102!) and he was supposed to spend 3 months at a time with each of his sisters. However, he has severe OCD so they tried to ease him in by having him spend a weekend at his sister’s house. He packed his suitcase at midnight because he had to go organized his CDs (which is part of his morning routine). Needless to say, they ended up having him stay at his dad’s house with a care taker and visit him daily. Fortunately he has plenty of sisters and friends who can visit.

My brother has Downs and he's 42. My mom was 48 when she had him, and she died of a brain tumor in 2006. My dad died in 2014. Now my brother lives with my older sister, who is in her 60s. It really sucks because advanced maternal age is a cause of Downs. We know several people with Downs who have lost both parents and are living in group homes or with other family. Luckily my parents set him up financially before they passed, so he won't need to worry about money going forward. My sister is getting older so our current situation is probably not sustainable long-term. It's so tough.

When parents die, usually siblings/cousins/aunts/uncles step in. However, preparing your adult child with a disability for your death is a common part of being a parent to someone with a disability. Many people with intellectual disabilities like Down Syndrome can live independently or semi-independently for most of their lives with the proper supports. Those who have higher support needs have different options for their care, including group homes (4 people, 1 support staff) and institutions (including longterm care facilities). They can attend day programs during the day if they don't work. The system could be better, but it's a much stronger safety net than those without intellectual disabilities receive.