Susan's Blog

Saturday, August 22, 2009


People say I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will live as one.
–John Lennon

I don’t think I said it clearly enough in the last post. What I want is not to have to be in The System anymore. I don’t want to have to worry about what The State will be able to do for Nat, and what he will be able to do in The World. I am so sick of the world and the state and the system. The system says that you can’t save up the money you get in SSI; you have to spend it all on your kid’s needs. But if he doesn’t need quite that much, the Social Security Administration will not decrease the amount; they will just take it away. You can’t just let the money accumulate beyond $2000. You can’t find a good investment for it and dedicate that entire thing to your child’s future. Either he spends it monthly, all of it, or it goes away. But if he has qualified for the entitlement, why not be able to invest it? Why should the Federal Government care if we use it monthly or in a few years, once it has increased in value as an investment? If he is entitled, by virtue of his disability, to a certain dollar amount per month, why can’t that entitlement remain as long as the dividends and principal go for that same individual?

Or how about this one? The State did not give one bit of doo doo when Nat was under 18 and getting medication. Once he turned 18 and we became his formal guardians, we have to apply to a judge yearly for his medication to be approved!

Why does the state care to the point of absurd micromanagement, and completely look away on other things?

For this and other reasons, I want a better system. I want to make my own system.

Just like when Nat was little, I want to keep him near me, and keep the world and its corruption away. Now I don’t have to keep the world away but I think maybe I want to keep the government away. It’s just too hard, and it’s just too messy.

How then do we set him up so that he’s okay, even when we die? How is the state going to do that any better than I can? And Karl Taro Greenfeld makes an excellent point in his book Boy Alone: When the parents die, even if the sibs can take care of the autistic sibling, he will lose some love from his life. Siblings cannot love him like his parents. Something like that. Very dark, but in some ways, its brutal simplicity resonates with me. I never assumed Max and Ben would take care of Nat one day. I just have not yet planned for that moment, other than by having a will. I joke with people when they ask me my plan for Nat: “I plan on not dying.”

Dying aside, I just want to simplify things. I want to scale back. I want to find a group of parents like us with kids like Nat and all together buy a house nearby with 5 bedrooms, let’s say. One bedroom for the live-in. A back-up staffer for when the live-in is sick or on vacation. Parents rotate who is the back-up back-up, so every four days Ned and I would be the back-up back-up. There would always be someone available to help out.

Four families would have to pay that person’s salary and all the food, etc. Each family would have to manage their own kid. Each family would have to book the fun events, get the kid a job (if that’s what they want to do), keep track of appointments.

Anyway, it would be the live-in’s job 1) to keep the boys safe; 2) get them to appointments; 3) get them to where they need to go; 4) get themto exercise and to have fun; 5) find other similar houses for broader socializing.

What would a live-in, well-trained person earn? The four families would divide that income into 4. Every year it would cost that much. That’s a lot. That’s one of the biggest problems.

Maybe there would be one extra part of the house, an apartment, that generated income. In my town, you can also rent out parking spaces for $100 a space.

Or what if the house was not as nearby as where I live, but was more rural? Like a 45 minute drive? What if it were like a farmhouse? What if there was a small farm that could generate a little income, like a greenhouse and a farmstand, tended by the kids? A horse to ride, ducks and chickens to tend.

Maybe one or two of my sons would decide that they wanted the simple life as well… Stranger things have happened.


So go ahead and do it. I mean it, start planning on how to make that vision you have a reality. Eunice Shriver did it with Special Olympics. You have the same kind of vision. Join with others who feel the same and go about doing it.

— added by Penny on Saturday, August 22, 2009 at 8:01 pm

You may want to check out camphill villages. I have actually visited some and they are lovely and the residents are engaged in meaningful work (farming, making, woodworking). There are some on the east coast.

I don't know the details on how much they charge, but it don't look cheap. Susie

— added by Susan on Saturday, August 22, 2009 at 9:33 pm

Here your child must have less than $5000 to his name to qualify for ODSP – your SSI.

I've fixed the will to a Henson trust which means he gets the money but technically it's the trustees money…. It's complicated. So he gets less than $5000 in cash each year but they can purchase special items from that trust on top of that amount for him…. confused yet??

Then there's the "out of will" trust, (fancy name) that I haven't done yet… these little projects with the lawyer aren't cheap… to do the same while I'm still alive and when we die it rolls into the Henson trust.

I'm with you… I'd love to be out of the 'system'.

— added by farmwifetwo on Sunday, August 23, 2009 at 8:00 am

One thing, Farm wife, that you should know for the future: SSI is Social Security Income, and it is a Federal, not state, program, based on severity and permanence of disability, not on financial need. The other entitlement you are talking about is probably a state one. In either case, however, there are very unfortunate limitations and complications that go with the system!

— added by Susan Senator on Sunday, August 23, 2009 at 9:42 am

The complications to our system make my head hurt! I recently refiled for SSI because my husband has so little work now we probably fall within the financial requirements again. I used to get it when Jarrett was younger, but then Mike changed jobs and made too much money. I filled out the disability report online and the instructions say to call and speak to someone (to get the forms you have to sign, make an appointment to go over everything). I got a person who was totally not understanding what I was telling her ( we used to get benefits, lost them because we made too much money, now we don't make as much money so I'm refiling). First, she told me I had to be over 65 or disabled (I know that!). She seemed to think that I thought being poor is a disability and suggested applying for food stamps at our local health department. When she finally seemed to comprehend what I was saying (which I had been saying over &over; & over) we managed to get an appointment scheduled for over the phone ( our "local" social security office is absurdly far away and I don't know that I would have the fuel to travel that far). I have never understood why the office that is consider your local office isn't necessarily the one closest to where you live. We lived in Queen Anne's County in Maryland when we received benefits before and the Annapolis office was about 20 minutes from our house but the "local" office for our county was Elkton which borders on ridiculous since it's about a 2 hour drive from there. I have not been able to understand why you can't save a signifigant portion in trust for your child in case it is needed. When (if) Jarrett's DVDs become a money making enterprise, most of the earnings beyond production costs will be placed in a trust fund to be used as needed for his future needs.

— added by cameramom on Sunday, August 23, 2009 at 11:25 am

See what I mean??
I think that the SSI Nat gets is different from what you are getting, because Nat was 18 when we applied. I think when the kid is under 18 the rules are different. I was told it was not about income, although we did have to make sure that Nat had $0 in his name. So, like Farm Wife we have had to consider trusts and that sort of thing to protect Nat's future.

— added by Susan Senator on Sunday, August 23, 2009 at 12:16 pm

In Maryland, once you get SSI, you get Medicaid, and then you get all the meds for next to nothing – no judge needs approval. Check out how that part works with his health insurance.
My friend and I have already begun discussing getting an apartment for our sons. His recreation counselor has suggested a less expensive model for the nights – remote monitoring, though I think this will only work if the residents all sleep through the night, which thankfully both sons do.

— added by suzette on Monday, August 24, 2009 at 12:01 pm