What happens to mentally retarded people later in life?

I’ve seen some adult retarded individuals working at Wendy’s or Taco Bell, but I’ve seen far more that are younger.

If an individual has a retarded child, what can they expect for their child’s future? What is typical for retarded peoplesa lives?

In addition, is the lifespan shorter for retarded people? I’ve never seen(to my memory) an elderly retarded person.

I appreciate any information.

Also, I assume Humble Opinion is the forum for this, not GQ as we aren’t truly dealing with facts.

Mentally disabled Americans (you’re going to get some flak for using ‘retarded’) do have a shorter life expectancy (about 50-60 years versus the national average of 75), in part because of various physical problems attached to their mental ones (e.g. people with Down syndrome are more likely to have thyroid disease and diabetes), but also because they often lack access to adequate medical care.

The mentally handicapped people I know have all been lucky enough to have living parents who care for them well into their own old age. There are also pretty good facilities and schools in my area, but damn they’re expensive. Not quite sure what happens if they have no support system. If they’re not outwardly handicapped, I imagine they end up on the street. Otherwise, some sort of gov’t-operated home, maybe?

I work for a company that provides supported living services to mentally disabled people. Many such people live in the community. They are provided services according to their needs as determined by a team of people that includes the consumer. The services that are provided can include housekeeping, meals, personal care, etc or can be restricted to transportation and assistance with appointments and shopping. It depends on the level of functioning of the consumer - how independently he/she is capable of living. In some of the homes I oversee, we provide 24/7 services that include total support and supervision; in others, we only provide limited service for a minimal amount of hours a week. (The smallest contracts that I know of are around 3 hours a week.)

Individuals who are more involved behaviorally or medically might live in an ICFMR (Intermediate Care Facility for the Mentally Retarded). Those facilities usually have 24/7 nursing care available and more behavior support and supervision than can be provided in a private home. I don’t have direct experience with an ICFMR but my company has a few in other areas.

Most of the consumers we have are employed at sheltered workshops, which allows them to earn some (usually very little) money. When those consumers reach the age where others are retiring, they are offered the chance to attend a senior program sponsored by the workshop instead of working. I know a charming woman in her 80s who refuses to give up working to go to the senior program, saying that she likes to keep busy and would be too bored. She doesn’t earn much, but she’s happy.

We do have some consumers who work in the community, and those jobs are usually support jobs such as dishwashing or making salads in a restaurant, carry-out in a grocery store, or janitorial work.

Many of our consumers are middle-aged to elderly and the only consumers I’ve known who have died have been younger people who died from causes that strike the general population equally. My company, when we are contracted to help the consumer access medical care (in some cases we are not, when there is family involved who prefer to take care of that themselves), requires that our consumers get annual physicals and dental exams, and we also assist with medical care and medication administration as needed by the consumers.

Sorry for the long post; I live this stuff 24/7 (I’m on-call all the time)!

My family are members of ANFAS, the local “association of families and friends of mentally disabled people”.

One of the lines of work of this and other Spanish associations of/working with/for disabled people is as-independent-as-possible living arrangements (if the disabled person and his parents are able and willing to live together that’s fine… but if he wants to live in a care-managed apartment or on his own, the possibility exists); also taking care of “what will be of him when I’m not here any more”. All of those associations provide jobs for their clients: bookbinding, sales of lottery tickets (the ONCE lottery), sewing… And one of the big points is getting people evaluated on what they actually can and can’t do, doing your best to drop prejudices off a bridge. ONCE is more focused on physical disability; they can be called to help adapt workplaces for a disabled person, for example.

We’re going through an “interesting” situation right now (think Chinese curse): the mother of one of our Downie friends is in the early stages of some sort of dementia; she gets lost in places she’s known her whole life, doesn’t remember how to read a clock… All her children are worried about it, but getting L to understand it isn’t being easy. She’s been his strength for 40 years; now she can’t any more.

There are two sides to this coin. While some Developedmentally delayed individuals [the proper nomenclature doesn’t usually include “retarded” BTW] live a good life it often takes a lot of money for them to live a life that is meaningful to them and their parents. I’ve worked in state funded group homes and worked in private facilities, the private specialized ones tend to be slightly better but that can depend on level of need, level of experience with the staff and a whole gamut of other things. Many high functioning developedmentally disabled people go ont ot live good lives, some lower functionng ones do not. Unfortunatly the almighty dollar bill has a lot fo do with quailty of life.

Generally, it’s not pretty. Unless there’s a lot of money in the family, there is usually a lot of stress on the person’s aging parents, and then on the person’s siblings, and even, as in my case, the person’s nephews and nieces. Private or government-supplied homemakers, transportation, etc., helps, but it’s not usually enough.

My experience is that it doesn’t end well, and it can cause pretty severe cracks in the rest of the family. Whether the person is living independently or in a home of some sort, there’s not a lot of happiness involved for anyone.

In situations or places where there are no resources at all (government, family, private), which probably describes over half the world, I can only imagine how bad it is.

It really depends on the area and on how high functioning the individual is. My brother in law is mentally disabled and works and lives in a supervised apartment situation. He works at a sheltered workshop environment and gets paid and his apartment is shared with one other man and 2 social workers. The social workers use it as an office in the daytime and make sure all of the needed chores are done, bills are paid, etc then when he and his roommate get home, they’re on their own. They take turns preparing simple meals and things like that.

The community center he’s associated with is nothing short of amazing. He goes bowling regularly, goes to all of the local fairs and events, has had several big trips (he’s a NASCAR fan and went to a few races with some of the workers), and is generally a very happy man. He is actually coming down to visit us next year. One of his aids will get him to the airport and on a plane and we’ll go get him. He’s functional enough to fly alone, but not to understand how the ticket works or where the gates are, etc.

So it depends entirely on level of functioning and location. He’s lucky enough to live in a very rural town in upstate NY that evidently cares very much for it’s disabled population. The facility he lives in is top notch. Not everyone is nearly so fortunate.

I forgot to add: He’s now 39 years old, so I can’t speak for what happens when he’s older than that. There’s never been mention of him leaving the facility or anything.

I have an aunt who is mentally disabled who is almost 60 now. She can hold down a job as a busperson in a nearby restaurant that she is able to walk to. She lived with my grandma until she passed away, now she lives by herself in a small condo. After my grandma passed, the responsibility fell to my mom and her brother to watch over her. I imagine that if for some reason she outlives both my mom and my uncle, the responsibility would fall to one of us kids, but that seems unlikely as she is the oldest of the 3.

Parents with children that have special needs often set up specific trusts or leave details in their wills about how the child should be cared for until the end of their life. Money does come into play, as well as how independent the person is. As others have said, often there are accompanying health issues where the person does not have a normal life expectancy, but not always. My dad is an occupational therapist and does work with group homes of varying quality where many types of handicapped people live when they don’t have family that can care for them.

The term “mentally retarded” is perfectly well accepted here in VA - the name of the state agency is “Commonwealth of Virginia Department of Mental Health, Mental Retardation, and Substance Abuse Services.”

My wife, who is a LPC, worked for nearly 10 years in a hospital for the mentally retarded and brain-injured in South Carolina and I recently asked her this very same question. She responded that provided there wasn’t some underlying medical condition, the patients (some of whom had been there since birth) usually lived just as long as people without the same issues. One elderly gentleman she worked with had been brought there as an infant because he was the result of incest. As far as she could tell, there wasn’t anything wrong with him at all. This was before the Reagan administration pushed for de-institutionalization, which was a positive in some cases but probably resulted in some people who needed the highly structured environment being pushed into the streets to fend for themselves.

My mom’s sister is 61, but mentally and emotionally, she’s a child. She’s already lived far longer than anyone expected, what with her bad heart and diabetes and several other conditions. She lives with my mom, and should she outlive her, one of my sisters will take over her care. Unless her health issues become more than a non-medical person can handle, she’ll be with family till she dies.

My closest friend manages a group home for aging mentally retarded men, one of several in the metro Atlanta area run by an organization called Enable (which also has homes for elderly MR women). On average I’d say the MR’s I’ve known are older in “real age” than their normal abilitied contemporaries for a variety of reasons (they obviously didn’t exercise much and often there’s a physical component to their condition, and some have just had hard lives). Mostly they have the same health needs as other aging people, though obviously certain diagnoses have more. One of his clients is a 76 year old man who’s in near perfect health, while a 57 year old man with Down’s Syndrome is by far the oldest in “real age” at the group home (it’s very rare for a Down’s Syndrome person to make it past 50).

The higher functioning guys are all quite content to happy. I’ve worked with elderly MR men and women myself in years past in group homes and same story- in fact some were exceptionally happy because they’d lived through the snake-pit years of Mental Health organizations and the group homes were paradise in comparison. One thing I have noticed, though, is that several of the elderly MR have higher sex drives than people of equal age and normal intelligence, both male and female. (We had a 70 something lady at one of the group homes I worked at who was one of the randiest old broads I’ve ever known, but a total charmer.)

Most people with Down Syndrome, the most common form of mental retardation, develop early-onset Alzheimer’s disease, usually presenting in their 40’s or 50’s. This may contribute to why it is unusual to see elderly individuals with mental retardation out and about.

Yes, I was going to add this myself. I have had a number of patients who are mid level functioning, worked in group workshops, lived in group homes etc, who become managability problems as they age and they get early onsett Alzheimers disease starting in their 40s or 50s. Some of them end up in Long term care facilities, some in psychiatric hospitals, some manage a long time in group home settings with very patient and tolerant staff. A lot depends on the involvement of families, etc.

Ten years ago I worked in a group home for clients with developmental disabilities, there were two ladies there of about the same age, but that was where the similarities ended. One had grown up as a very catered to and loved pet in a warm and involved family, who ultimately had A. go to a group home so that the parents could get some rest and so that she would develop some independence. (A was about 45) B had been institutionalized from birth to her late 30s and then ended up in community care when that institution was closed. B. was not very verbal, not sociable, very angry and brooding.

On the other hand, I still see a woman I have known for over 30 years who went to our church around town. She has some form of developmental and intellectual disability, and is a “little person” but she goes everywhere in town on the busand participates in everything, despite being unable to read. Ive known who she is since I was a very young girl and I still occasionally see her out and about. She would have to be at least in her 70’s now, and the main thing is I am amazed that even in the 1970s for someone like her to live in the community was a very uncommon. Yet there she is.

As a public librarian, I see a lot of people who don’t have anything to do all day but hang out at the liberry. Some of our regular patrons are mentally handicapped people who do not work. I know at least a few of them live in group homes or similar institutions and come and go freely (specifically there’s one lady who I know has a bus pass) but either can’t or don’t work. Additionally, I’ve seen adults with mental disabilities being taken on “trips” to the library with counselors or caretakers of some sort; I spent a good hour once helping a man on one of these outings type his resume. His address was some sort of institution and he was seeking work. I’ve also known adults who live at home with parents or other caregivers, of course.

In other words, it depends.

ETA - one of my favorite Onion articles:Developmentally Disabled Burger King Employee Only Competent Worker .

At the air base where I work, lots of older mentally disabled people are employed as janitorial staff. I assume they work for a gov contractor. They work all over the base, including secured facilities.

I am curious if this is a nationwide thing on federal installations.

Thanks for pointing that out. I’m a teacher in Michigan, and mentally retarded is also acceptable. It does pack a bit of a “punch” that disabled may not, but it isn’t rude.

Words like “retard” or “idiot” are considered rude, but not mentally retarded.

I should hope Dopers are above “giving me flak” for using a term other than mentally disabled.

Thanks for the information, everyone! I used to live in China and often wondered what happened to mentally retarded people there in their old age, since the system is not as developed.

That article struck me as too close to reality.

My understanding is that all counties in NY are required to fund their local Arcs. The name has changed recently. When I first started going to local Arcs it was an acronym, using rather outdated terminology. The goal of the various Arcs I’ve seen was to place those consumers who were high functioning enough with real jobs in the mainstream world. And, for those who couldn’t work in those environments provide a place where they could go and do something for some pay.

Typical jobs I saw the Arc members doing included preparing rag bags from donated clothing, going through salvage lots to see what could be sold to vendors, and occaisionally some crafts work. One of the businesses that the local Arc runs that I know of is a flower shop, but that wasn’t something I saw since it isn’t run out of the main Arc facility I went to.

There is a federal procurement program (http://www.abilityone.gov/jwod/index.html) that funnels work to nonprofits that employ people with disabilities. Basically, the rationale is that if the federal government needs to buy something, it should try and buy from organizations that employ people with disabilities, since it might take some of the pressurer off other government programs that are designed to support people with disabilities. It’s a relatively small procurement program, but a lot of their contracts deal with janitorial and mess hall work.

I work with a group in a federal building on occasion and the people in the cleaning staff that come in at 4:00 every day are mentally disabled, although they seem to be fairly high functioning.