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As Autism Ages: What's Your Biggest Worry?

FutureMy oldest daughter is about to turn 24. My baby is 18. My head is spinning with questions about how they will live. Where they live. With whom will they live. Social security assists them - but would never support them here in Connecticut.  I'm not thinking about when I die - there's too  much to do right now to build a life for them. A safe, fun, meaningful life they can enjoy.

It's time for a new conversation. The experts are few and far between. This autism epidemic is bursting into adulthood and systems are not in place. We'll have to build them.  You know that. I know that.

What are your most pressing concerns for your child today? In 1 year. 5 years. I can't think much past 5 years right now.  We need to talk about this. It doesn't matter how you think your child became autistic.  The fact is, all of our kids will need support, whether going to college and then employment or a day program and every stage in between.

Let's start.   Kim



So much to do right now , make a plan ,use a map , clear aims and objectives available to start with! ie
[1] A safe fun, meaningful life family can enjoy .
Good clear aims and objectives !
Helen Sanderson Associates provides basic training in putting it all together for assessments ,goal planning and plans of action implementation of goal plans and the evaluation /review process to consider what's working what ain't working for the person with the individual personal care plan.
Helen Sanderson Associates provides a lot of free information online ! other organisations must be available surely ? providing the same?
[1] first step, get a copy of your and your childs full medical records Uk charges about £50 max 2013 price?
Consider your own resources in terms of skills knowledge and life experience !
Easy Peasy ! consider a lovely pot of home made soup on the stove?
perfect example of reverse goal planning
what's in the soup What's the recepie /
last step will be check the seasoning?add the parsley for taste and appearance decoration /
so what type of salt and pepper was used ? table salt or what type of salt ?
what type of pepper ground or crushed fine or coarse crushed?
What type of parsley used to garnish soup and add flavour ?
dried from a jar or fresh? flat leaf or curly? plain supermarket or home grown or purchesed organic?
Think about your best recepie for a pot of home made soup from scratch to dinner table not difficult ! most families have the skill, knowledge , for individualised care planning families are the experts and in a great position to direct care plans .
Go practice think of your faviourite dinner and go write how it got from an idea to being on the dinner table !
You have just done a plan, and made a map using reverse goal planning, well done. easy peasy!


But they are the sweetest things in the world; what would I do with out them?
My world would end.
But what will they do with out me?


Ya All, were do I even begin?

I got two, okay. Both high functioning. Remember there are other injuries that manifest as other mental health problems and not just autism. Or maybe our girl has some form of autism and I just don't know what that looks like?

At any rate they will never qualify for any kind of services. They have no drive, no ambition. Isolated, alone, no desire to get out and meet the world. Scared, want it safe, secure.

Don't seem to know the real world will still come in on them and eat them alive if they don't have money or the ability to pay the bills. And lazy. Is that the mitochondrial thingy showing up? Won't learn to cook and would starve before they -- well if not for me they would not find the kitchen for all the dirty dishes. Never washed a dish. Never dusted and won't. Won't pick up unless I plead and beg and out right cry. They are well into their third decade heading into the fourth decade of life. Folks this is not normal.

cia parker


SSI reduces its payment by one dollar for every two dollars in wages the disabled person earns. Do they do that for the SS income they get from a deceased parent as well?

Is everyone here aware that in most states autistic people don't even make minimum wage? In many places they get paid maybe a dollar an hour, or even less if it's piece work at a sheltered workshop. The day program I referred to had one of those as well, I had never seen one, it was like a high school gym with no windows, and a lot of little tables with handicapped people doing jobs for companies like 3M.

Right now C is in a school to work program, doing janitorial work at the county family services agency for two blocks of her school day (three hours). They're supposed to be working on soft job skills as well. She likes it. And is earning minimum wage. It's all very depressing, and I wish I knew how it was going to turn out. After reading J.B.'s How to End the Autism Epidemic, especially the studies on how aluminum in vaccines causes autism, a logical progression of them, with the most recent only from this year, 2018, I'd say that we're nearing the end of this phase of the debacle. Yeah, it's going to take TRILLIONS to compensate all these victims, as J.B. says. They'll probably set up a special tax to take back 90% of the pay outs.

cia parker

From what I've read, Camphill homes (Waldorf) sound very good. Employment on-site, rotating among baking goods to sell, weaving things to sell, working in the shop, working in growing crops and animal care. Vegetarian meals, which is a problem now that C. needs a grain-free, casein-free diet. Little individual homes. I wish there were more of them. I read that they don't get government funding because they're in the country, not in the city where the residents are "included" in the community. But that could change.

C. wants to live somewhere else when she graduates next year. We looked at one facility for handicapped people, but the presumption seems to be that they're competent in most ways and can deal with the bus schedule taking them to set places once a week, if they want to go. They have only one room (two if they have a certified need), and have to deal with groceries themselves or, I guess, through the family services agency. I didn't think it was suitable. We also toured a facility that charges minimum one hundred a day for more care than my daughter needs. As was said here, no OTC supplements allowed without a doctor's permission, which is bad since C. now decides herself how much she needs of Miralax, Benefiber, Natural Calm, milk of magnesia, and so on. It's not cut-and-dried. And they have mandated monthly drills for about ten different types of emergencies, not just fire and tornado, which seems silly. Hazardous waste spill! Panic in the streets! A van takes them wherever they want to go. We're going to tour a small building of apartments kept by the family resources agency, I think it's four apartments per building, and there's a caregiver who drives them here and there. One mile from here.

There are also ISL homes, in which private families house and take care of disabled residents. I don't know if state funding is available to pay for them, I think it may be. I don't know how much they get paid. I'm sure quality and responsibility of caregivers probably varies widely. We got on a Section 8 lottery list. This all seems so jack-leg. So if you don't win the lottery, then what?

We looked at one day program last week, but it was for more severely affected individuals. When we went the participants were just in a room with a basketball game on TV, which no one was paying attention to. They have a bus and take them bowling every Monday, to the library every two weeks, and seem to have a number of activities going. But it would be depressing for C., not as affected as the others, who were all visibly not normal, even in physical appearance, while C. is. There are two more day programs here, all new or not more than two years old, one of them very large but ten miles away. Surprising that most people aren't aware of the large number of residential facilities and day programs springing up all around them to serve this huge and growing population. I don't know what's going to happen when there aren't enough capable, compassionate typical people to pay into the system and fund them.

At a housing meeting, they said that group homes for only one kind of disability (like autism) don't get federal funding, which demands a variety of disabilities at each facility. The first building we toured takes paraplegics and schizophrenics as well as developmentally-disabled people, but I think that would be dangerous. Again, from what I could see, the residents were largely independent and mentally competent.


My 18 yo son worked as a floater for a not for profit agency running several group homes before starting college. They are desperate for staff. Desperate. The job doesn't pay well and is stressful and hard -- it requires dedication, imagination, intelligence, patience, diplomacy, physical strength and dare I say it, love. It doesn't pay well, even at managerial levels, and people burn out fast. But residents still need care, 24 hours a day. As a teen with minimal training, my son was often on his own with two or three charges, even though he wasn't supposed to be. Staff turnover is upsetting for the residents who bond to their caregivers and rely on routine. We have to push for better recognition of direct care workers, better pay and a better career path. Even in the best of settings, it is the staff who will have the most impact on our loved ones lives when we can no longer care for them.


Biggest worry? How to trust anyone.
I have a girl with autism. She was abused by the teacher in her kindergarten class.
How can she protect herself in the work force? How can she protect herself in a shared living environment? When we're gone, who will be helping her to protect herself?
I read so many stories of abuse by the very people that are supposed to be helping and protecting those with special needs.

Vicki Hill

Most people think of SSI as the only money source for their children. But when the first parent starts to draw Social Security (even at the age of 62), the disabled adult child draws half of that Social Security amount (as if the person had retired at age 65). When a parent becomes disabled or dies, that goes up to 75% of the parent's Social Security amount. This is known as RSDI. And after 2 years on RSDI, the person with a disability qualifies for Medicare. Medicaid then becomes secondary. (Depending on the state, it may take some paperwork to make that switch; check with a local advisor.)

For many, this will be more money, and better health coverage, than when they were on SSI. Still probably not enough...but the gap isn't as huge, long-term, as most people assume.

Group homes are generally required by state law to have residents out of the home a certain number of hours or days per week. Thus, residents generally attend a day hab, volunteer program, or other outings into the community.

FWIW, my son (age 30) moved to a group home in May. It was HIS choice...and he likes it there. He just felt it was time to be away from Mom and Dad. We still see him about once per week but, for him, being in a group home is a big step for independence. He uses Uber to get to his day program...but then, he is capable of getting out of a car and going inside the building without supervision. I know not everyone with autism can do that. (The group home takes more impacted residents to a different day program...but that program is not appropriate for my relatively high-functioning son.)

I've heard all the bad things about group homes...but this one works for my son. I like the idea of intentional communities, but reality is that the government leans strongly towards group homes. I doubt if we can completely switch that leaning in my lifetime, so I would encourage support for more funding for group homes, which could allow more people to access them and demand a higher level of care.

One thing to keep in mind as we all demand more accountability from group home organizers. Rules that 'protect' our adult kids can also limit them. My son used to do some simple (microwave) cooking in our home; the group home cannot permit that, as the state fears that he might burn himself. He had some leeway over when he needed over-the-counter medicine, but in a group home, that is locked up and a nurse must first okay. Sometimes there is a trade-off between safety and independence.

Aimee Doyle

My son is 29 and he is in a good day program where he volunteers 25 hours per week. He lives with us currently. But moving forward, I worry about where he will live - he's not capable of independent (or even semi-independent) living. Group homes aren't quite appropriate either. Even with employment supports, I don't think he would ever be eligible for competitive employment.

I also worry because autism is so isolating. He doesn't really have friends or a community. He does have family, but they have their own lives. After we are gone, who will take him to Special Olympics? Who will make sure he has recreational opportunities? Who will play games with him or take him to Disney-themed events? Who will take him for hikes in the woods? We do all this for him, and it's like having a job. We drive him everywhere. I can't really imagine anyone else having the time to do these things for and with him, and paid caregivers vary greatly in terms of how much they care and how much they do.

Life is more than housing and employment. These are important, and certainly aren't addressed adequately. They need to be. But the larger picture of having friends and being part of a community isn't even really discussed at all. In so many group homes, I see residents just watching TV. Technically they are "in the community" but they are certainly not part of community life. And they don't seem to interact much with each other, either.

Mark Wax

The answer is intentional communities. Not the dark, barred windows of yesteryear, but bright professionally staffed campuses that are run and look much like today's community colleges and assisted living facilities. Easily accessible, fully integrated within everyone's view and reach. Isn;t that a true solution: lifelong learning with appropriate guidance. The costs are no different than long term care facilities. There are many communities that already have the core competencies of the autism programs of special schools provided by NFP organizations. The federal government had no qualms about placing excise taxes on vaccines to provide immunity for the makers. Why can't we make sure our Social Security is a true "insurance" program? Surely, the profit motive can stand down for a brief moment in American history.

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