In Baby Teeth, Links Between Chemical Exposure in Pregnancy and Autism
America, July 4, 2018

Disability Scoop on Making Group Homes Safer

Home heartNote: Many of us are starting to think about where and how our children will live as adults, as we grow older, and after we die. Group homes are one option. But are they in any way appropriate for adults who may have moderate to severe behaviors, and/or who are not "compliant?" The world of special needs is not as it was 25+ years ago when most consumers had down syndrome or an intellectual disability or cerebral palsy, spina bifida and other diagnoses. Autism is the new kid on the block - and no one knows quite what to do with or for our kids. When consumers are not compliant, staff can become angry and belligerent and retaliate. It's a frightening prospect. Adults with autism may be excluded from any funding by virtue of IQ and yet, be unable to live independently. What of them? If the goverment tasked with taking on the autism epidemic via IACC is any indication of actual progress for us? We're in for a world of hurt, and so are our kids.

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Feds Urge Steps To Make Group Homes Safer

Five months after a scathing report found that injuries, serious medical conditions and even deaths of those with developmental disabilities living in group homes often go overlooked, federal officials are responding.

In a four-page informational bulletin issued this week, the Centers for Medicare and Medicaid Services’ Center for Medicaid & CHIP Services said that it “takes the health and welfare of individuals receiving Medicaid-funded Home and Community-Based Services (HCBS) very seriously.”

The agency described its new bulletin as the first in a series of guidance documents it plans to issue in response to a January joint report from the U.S. Department of Health and Human Services Office of Inspector General, Administration on Community Living and Office for Civil Rights.

The findings were based on an audit of emergency room visits from group home residents in a handful of states, but investigators said that media reports from across the country suggested the problems were widespread.

Ultimately, the report recommended that states adopt model practices for better oversight and that the Centers for Medicare and Medicaid Services establish a “SWAT” team to address problems. practices, the bulletin noted....

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Someone

A recently proposed budget contains huge cuts to Medicaid as well as very substantial cuts to Medicare and social security. This is to balance the massive tax breaks given to the billionaires, to get Sheldon Adelson another casino. I am not sure why disabled kids should foot the bill. Also their parents have frequently spent a lot of money on them and will need social security and Medicare--and not the "privatized" new version proposed which is just a plan to bilk money out of the system for profit. Be aware. If you see this about to happen, speak up and make some noise. This could be a disaster for autistic kids down the line if it is allowed to proceed. They are blameless and will need all the help they can get.
Modeling group homes on Camphill is a great idea. Perhaps some group will emerge to set this in motion--they will certainly deserve federal funding.

Aimee Doyle

@Cia - "At the cost of billions and billions and billions of taxpayer dollars until the vaccine epidemic is halted, plus eighty some-odd years."

Cia - you're right about the cost. Not sure that the money will be appropriated for our kids, though.
Once a child is vaccine-injured the outlook is grim. The recovery rate from autism is under 10%. And I've seen that voters (and their Congressional representatives and Senators) seem extremely reluctant to spend money on the disabled. This happens in both red and blue states, although to a somewhat lesser extent in blue states.

Here are some examples. The Individuals with Disabilities Education Act (IDEA) was signed into law in 1975 and it has NEVER been fully funded; last I checked, not one state is in compliance with IDEA. Medicaid (on which my son wholly depends for his day program and his health insurance) is under attack. I've heard that cuts are proposed to Social Security (my son has been receiving SSI for a decade). And how much does NIH spend on autism research, compared to other childhood disabilities and diseases?

I've talked to people - relatives, friends, acquaintances, colleagues - about this issue. Some people seem genuinely baffled about the need to spend on the disabled; as a relative of mine said to me one time, "In the midwest, we take care of our own. We don't rely on government or anyone else." I sort of get that, but not every family can homeschool, not every family can provide PT-OT-Speech, not every family can provide wraparound care for their disabled child through that child's lifetime,and not every family can provide a job for their disabled young adult or recreational opportunities, or health insurance without relying on organizations of some sort. In fact probably most families cannot, all on their own, fully provide for the needs of their disabled young adult(s).

Vaccine issues matter - but for those who are already injured - education, treatment, therapy, care, jobs, recreation, etc. also matter.

cia parker

The Waldorf communities are guided by the religious philosophy of anthroposophy, which provides a moral structure and guarantee (to the extent that anything can be guaranteed). The publicly-funded homes which we're going to need would not have that, but could try to use the basic model of a variety of employment opportunities, rotated for interest, offering products for sale to the community. Here an autism advocate suggested that empty dorms on the university campus be used as autism residences. Built-in cafeterias where GFCF/grain-free food could be provided to the residents. And yes, at taxpayer-expense, free food for the rest of their lives. Deal with it. Many volunteers available, special ed students and frat/sorority students who could take the residents out for all the built-in recreational opportunities of any university campus. Integrated into the community. The employment opportunities a short walk away, with the shops selling the products on-site.

This can be done, should be done, will eventually have to be done. At the cost of billions and billions and billions of taxpayer dollars until the vaccine epidemic is halted, plus eighty some-odd years. I vote we bankrupt Merck, Glaxo Smith Kline, etc., and make their millions go as far as possible.

cia parker

Benedetta,

My mother was like what you described. She reacted to a diphtheria shot when she was four (shortly after they put mercury into it) with bowel disease (an enema every day for the rest of her life, and she lived to 84, the last fifteen years with mercury-induced Alzheimer's) and Asperger's. Once she said her mother had been anxious about her future and was relieved when she got married to my extremely friendly, outgoing, loving father. I asked why she had been anxious, and my mother said she didn't know. Now I realize that it was because of what no one could put a finger on, she was very intelligent, hard-working, responsible, but didn't enjoy conversing with people, and so she didn't. I called her church when she was put into a nursing home, and the pastor said that he had tried to find her friends at church who could organize some kind of outreach, but he said that he had found that she didn't have any friends at church. After a lifetime of attending church every single week, regularly attending women's meetings at church and sometimes sponsoring meetings at our home, for which she baked refreshments. A Mexican friend who visited said she was cold. Emotionally unexpressive. Now I recognize that, as in myself, my brother, and my nephew, it was Asperger's caused by the vaccine mercury (and probably aluminum too). Her sister once told me that she had always been a worrier, anxious. All because of that vaccine. Well, plus yearly flu vaccines with mercury from about 1980 on.

I have said that I cautiously recommend the DT series after two, even though the diphtheria vaccine greatly degraded her quality of life and the flu vaccine caused Alzheimer's, the loss of her intelligence, memory, and mind, and then paralysis, general paresis of the insane as they called it in mercury medications for syphilis days. I continue to cautiously recommend it, but absolutely always without mercury (more than the unavoidable trace amounts). But every parent must research this and decide for themselves. And vaccine encephalitis may turn out to be a problem even without pertussis, we would have to track it and add whatever data we got to the hopper. But dying in agony of tetanus or diphtheria is not good either.

Aimee Doyle

@Jonathan - The Camphill communities work beautifully, but given that 50,000 autistic minors graduate to adulthood every year, there aren't nearly enough of them to absorb the "tsunami".

So true, Jonathan. According to Wikipedia, there are only ten US states that have Camphill Communities, although states likes Pennsylvania and New York each have several. I wish there were one in Maryland.

Jonathan and Cia are right, too, about the current law which requires group homes to be "fully integrated" into the community. From what I've observed, group homes may be situated in a community, but often are not part of the community life and activities.

Grace Green

Jonathan, I suppose your laws must be slightly different from ours in the UK, although I'm not completely in touch with what the situation is here at the moment. I have heard that recently workers who volunteered at the Camphill communities have been told they will have to be payed, and many in the movement believe this will destroy the ethos of the communities. I suppose we are going to have to stand up to TPTB, or try to get round the regulations somehow. Come to think of it, I'm a housewife and work where i live. Does that mean I'm institutionalized? Probably!

Jonathan Rose

Grace, you're absolutely right, the Camphill Communities are absolutely wonderful. Our youngest daughter has spent her first year there, and it's ideal for her: immensely dedicated staff, organic food (mostly home grown), and training in genuinely productive craft and agricultural work.

Despite their great work, however, bureaucratic rigidity is making life difficult for these communities -- because they're defined as "institutions". That is, their residents live and work in the same place. Ostensibly to avoid the evils of the old state hospitals, we now mandate that the handicapped be "integrated into the larger community" by placing them in group homes. But as we see, these group homes have only replicated the abuses of institutionalization. The Camphill communities work beautifully, but given that 50,000 autistic minors graduate to adulthood every year, there aren't nearly enough of them to absorb the "tsunami".

cia parker

There's an excellent Camphill (Waldorf) home in Minnesota, with a model which should be used everywhere. Individual residential cabins, meals served in common, there are a weavery, a bakery, a farm with crops and farm animals, and a shop where they sell the products produced to the public. Residents rotate among the jobs involved in the different enterprises. This model could be used everywhere, with supervision, of course. They have no other ideas, might as well try out this very good one. Their current idea is limited to janitorial jobs for the autistic. Right, mop a floor every day for the rest of your life. And they wonder why the employment rate among the autistic is so low. They've told me that with appropriate training, they're SURE that my daughter can learn to carry out her janitorial tasks independently, all by herself, every day. Their stupidity is amazing.

And things are heating up here. For the last couple of years year now most of the autism staff (speech etc.) in the public schools actually quit their jobs. The autism resource person in head of all autism programs in the public schools here just quit because he said he was being forced to do too many unethical things. One woman was heard to actually scream from the meeting room: "You don't CARE about the autistic kids, you don't care at ALL what happens to them!" Quite true, of course. The ones who care, quit. The ones in it for the prestige, the money, and the pharma carrots stay. Because it's totally obvious to everyone paying attention that autism is caused by organic brain damage, caused by vaccines. Until they recognize that and act appropriately, they're just spinning their wheels because that's what BP insists that they do. Step 1: teach the children English as a Foreign Language. The language circuits in their brains were broken by the vaccine encephalitis, but in many cases new ones can be made by simple language instruction techniques, modeling and practice. And then they can be used to support the development of higher-level thought, which might let them catch up developmentally. At this time, here, there's only useless "chat" therapy, but without the ability to understand and use the structures of English, it does no good. Textbooks written at the student's level of comprehension are forbidden. I was told at an IEP meeting that ALL students had to use the same grade-level textbooks, even the mentally- (whatever the acceptable term is now). And so FAAP (free and appropriate education) means one which benefits no one at all, which teaches the special-ed students nothing at all, and no one has any problem with that. The kids just sit there bored to tears and acting out, year after year, until they are allowed to escape into an attempt at a janitorial job. Where they fail yet again.

Another big problem is that by law they cannot have separate group homes for the autistic. And group homes have to be fully integrated in the community, not set apart. And that means, here, at least, that our only group home for the disabled has the paraplegic, Down's syndrome, autism, etc., but also the schizophrenic. That's right, it would make you hesitate to have your young autistic daughter next door to a paranoid schizophrenic? Tough luck, by law that's just the way it is.

Grace Green

I can only draw peoples attention again to the Camphill Community movement. I understand there are communities of this organization all over the world, including the USA. I'm sure it would be possible to extend the number of places if people here wanted to, and as the need clearly exists. The residents all do gainful employment suitable for their abilities, even if that is only washing up or weeding in the gardens. Shops are profitably run, and crafts produced as well as farms, and I can tell you the residents appear happy and fulfilled. Please look it up and see what there is near you!

Aimee Doyle

As an attorney, I've represented clients who have been placed in group homes. Here's what I've seen at some group homes here in Maryland. There is a tendency to "overmedicate" - particularly with residents who are runners, or who are too loud, or who have self-injurious or aggressive behaviors. Discipline can spiral out of control, and result in injury or death, particularly when restraints are used. Medical needs may go unaddressed. Residents who have parent advocates fare a little better - but none of us parents will live forever.

Group homes are not likely to be compliant with providing residents supplements or adhering to special diets, like the gluten-free/casein free diet. There are sad cases of overdoses of prescribed medication, or other cases of residents who miss doses of prescribed medication. The staff are often poorly trained and poorly paid; there is usually high turnover, and many of them work more than one job since they can't make ends meet. Residents rarely leave the group home except for work or day programs and spend a lot of time watching TV.

There may be exceptions to this (lawyers tend to see the problem cases) but I can safely generalize that state funded group homes generally don't have the resources to really deal with the issues our kids present. Increased funding would help, but there's a real reluctance at the state and the federal level to increase taxes for this purpose. And if your young adult is in a group home that you don't like, it can be very difficult to switch group homes.

Private group homes do exist, but they are extremely expensive - here in Maryland $100,000+ per year. I don't personally know any family who can afford that.

Someone

In recent years there has been a consumer mental health movement which involves paying jobs for peer counselors. I wonder if autism parents might start something similar and get in early to have input on group homes. If a segment of the money could go to pay some parents who are interested, I feel these homes would have a built in watchdog of sorts. If anyone is young enough and has the energy and inclination, perhaps this should be looked into. I think having a consumer group--probably mostly parents--could evolve as needs are identified.

Benedetta

Unlike the rest of the world, and the research done in the book that Dan and Mark wrote: "Denial"

In my area there were older people that suspect had autism. When I was growing up there were two neighbors, I need to look up these men's ages. I suspect the Typhoid vaccine which came before the pertussis vaccine, or the late 1920s combo DPT might have been what injured them.

They never married, there was something wrong that no one could put their finger one. They were nice, seemed a bit recluse, but loved to meet with the neighbors not on a social occasion, but when we were all working in the fields; they joined in and did their part. What we did was tobacco work which is almost all year long. They had a good IQ but highly anxious. . They never moved out of their childhood home and stayed there for many years. The trouble I saw with both of them was extreme loneliness, and isolation other than us who took them Thanksgiving, Christmas, and Easter meals.; other than us that they came over to help work. They watched for the smoke to start coming out of the stripping room which indicated to them that Dad was home,
They ran out of money in their old age and even if they had money transportation was a serious problem for them to get their groceries.

How can I stop that? How can I prevent that?

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