“Well, that was school. I learned a lot.” This is what Ned once imagined Nat might be thinking as he rode home from his very first day of school, back in 1993. The school was located in a junior college in the adjacent town; it was a mixed-disability class, as well as having typically developing children. Ned told me that he had no idea what Nat might make of school — it was such a big concept to understand for a three year old, especially one with “Expressive Language Disorder and Autistic-Like Symptoms.” (This was his very first diagnosis; I almost like its quaint and evasive character, in the way that I can look back on almost anything from that long ago with fondness: awww, such a little innocent naive diagnosis.) Even though we prepared him with a Nat Book (known to most people as Social Stories, but the Nat Books were invented by me; I did not know about Social Stories back then) complete with pictures of the teachers, classroom, building, and bus, Ned wondered if Nat might think that “school” was just that one day.
Ned stayed hidden in the hallway those first few days of Nat’s preschool. He hid so that Nat could forget about him and get used to the teachers there. He stayed a long time, listening to Nat cry. It broke his heart, but he knew that they both had to get through it. Plus those first few days were just for an hour or two, of transition, so Ned recently realized that he must have been staying in the corridor for a while because the schoolday was so short.
“Debi [the teacher] finally got Nat to look at her and stop crying, by quoting the commercial from the MassMillions Lottery,” Ned reminded me of this fact recently. I had forgotten that Nat was entranced by the lottery commercials back then, and he got the words “MassMillions” mixed up with “Maximillian” in that Nat way of his that was wrong yet made sense. “And the winning Maximillian number is…” Nat has always had terrific teachers. Except for one or two bad apples, the entire bunch was pretty much wonderful.
Will, Nat’s current teacher, called me the other day to set up a meeting so we can discuss the transition process for Nat’s graduation from school. The school is always so thoughtful and mindful of process. I remember how terrific they were getting Nat accustomed to the idea of living in The Residence. They used souped-up versions of the Nat Books, they used countdown calendars, they set up visits and dinners to The House. Nat was comfortable with the people and the place by the time move-in came.
His last day will be November 11, 4 days before he turns 22. We chose this day because it is a Friday, and Fridays make the most sense to be end days. We can then have his ceremony and party that afternoon. He will most likely spend his first days of Autistic Adulthood living with us at home, while we get the Group Apartment ready. We have settled on a 3-roommate group home in an apartment nearby. We have two other young men that we are hoping will become Nat’s roommates; their parents have to figure out how they themselves can prepare for this big change, as well as their sons. Our service provider is about to start recruiting a live-in caregiver. We have chosen Nat’s Day Program, in a nearby town. This program has many ties with local businesses like Shaws Supermarket, and we imagine Nat will have a lot of worthwhile stuff to do with his time there. I’m pretty sure the day program would likely begin the following Monday, November 14. Unless we decide to take Nat on a little vacation first, to celebrate his achievements.
Tonight Ned and I were talking about Nat’s imminent graduation, because we realized it was the same day as a friend’s annual dance party. We figure we can do both. One year we brought Nat to the dance party, and he loved it, of course. The way he dances is to hop straight up and down. “I wonder what Nat’s going to think that day,” Ned said. He paused a beat and then said, “Well, that was school. I learned a lot.”
We both laughed.
Very frequently I write about the federal government’s Medicaid and SSI programs. I am passionately supportive of these social programs, but I don’t often show you why. What, exactly does a program like SSI (Supplemental Security Income) do for someone like Nat, with a significant disability? The government’s own website states: “The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.”
Limited income and resources. It is no news that people with developmental disabilities are seriously under-employed. Seriously. Here is what Dr. Peter Gerhardt, Autism Guru, has found in his 30 years of work in the field of autism adulthood & transition: “67% of families surveyed had no knowledge of available transition programs and settings; 83% relied on family members as their primary source of transition planning assistance; and 78% were unfamiliar with agencies or professionals that might assist in job development; only 19% of individuals with autism were employed at the time of the survey with 74% of those employed working less than 20 hours per week; 85% still lived with parents, siblings, or older relatives.”
Someone like Nat, if it came down to it, could live with his family, of course. But the last time we tried that, Nat became very unstable and anxious, which led to outbursts of aggression and screaming. Now, I love that guy with every cell in my body. But I also love the safety of my family and I have found that other settings support him better. I was lucky. I had options, mostly because I live in Massachusetts, which has some of the better benefits and supports for autism. And mostly because I have the energy and time to educate myself about programs for Nat. Many many others do not.
What about the multitude of others who do not have a family, or whose family has to spend significant resources getting help for their disabled relative? Or who don’t have those resources, even? A few months ago, I went to an Autism Focus Group that was all about developing recommendations. Most of the folks in this group were adults with autism. They were living on very meager incomes. Many did not have cars. Many did not have jobs. Many lived with their aging parents. One lovely and socially skilled young woman was trying desperately to find a job, asking me for any help I could give with my networks.
Usually the SSI check per month, for someone developmentally disabled, is around $700. Your food and rent comes out of that and all else comes out of that. You probably apply for food stamps, and also use whatever public transportation is available. You also apply for the disabled person’s discounts that are offered in various places. That is, if you know that you have to apply, and if you are capable. Perhaps your guardian will know. Perhaps not.
Oh, and by the way, if you are on SSI, you are not allowed to save up the checks. You can’t have more than $2,000 in your bank account at any time. You need that money, every last bit of it.
So? Get a freakin’ job!
This is the refrain of the ignorant. Remember, you can’t have more than $2000 at any time. If you earn more, you lose SSI, but you may qualify for a different program, SSDI, which I don’t know enough about to cover here. And as for work, remember the unemployment problems in America. We all know about the unemployment rate these days. We all know about how any family struggles if they are jobless. What do you think happens to the jobless who have serious or even moderate developmental disabilities? The higher-functioning the individual, the higher the expectations; at the same time, they are eligible for fewer programs than someone like Nat. They are caught in the middle of needing to work but not quite having the social wherewithal to convince an employer. It is an employer’s market these days, too.
Having SSI qualifies you for Medicaid, which pays for insurance and other programs, like Day Habilitation. DayHabs are usually the one entitlement these adults have. They have a place to go from 9-3, M-F. DayHabs have activities organized, and some even have the resources to go on outings and do volunteer work. But many don’t. Many rely on sheltered work within the facility. They also rely on television. And still, they are lucky to have that, to have professionals to care for their needs during those hours. Medicaid pays for that.
How do these folks get caregivers and staff in their homes?
Medicaid has a program called Adult Foster Care. If you qualify — and you need to demonstrate severe daily living skill deficits — you might be able to receive $9000-$18,000 a year which must go to the live-in caregiver. If your disability is that severe, do you think it will be easy to find a qualified caregiver who wants to live with you, and earn such a low salary for such a demanding job?
Again, you are incredibly lucky if you qualify for that. Many do not. And many do not even know about it (see Dr. Gerhardt’s research, above).
How about housing? Where do you live, on such a limited income? Thankfully, this country has the Mobile Section 8 program that subsidizes your housing, which is utterly necessary in this day and age of expensive real estate and rents. But here’s the rub: there are years-long waiting lists for Section 8, and the disabled are competing with homeless families and seniors!
How about Project-based Section 8? You can only get those if you are working with a service provider who can buy the house in the first place, or with a landlord who is willing to be a designated Section 8 landlord. Or you buy the place yourself. But remember what your monthly income is…
So? It’s not my responsibility! Let private organizations help them instead! Government is too big!
This is what many in the Tea Party and other groups say. It is simplistic. We all benefit from the large military and roads. We all benefit from federally protected banks, public education. Those are big government programs, too. You can’t have it both ways. And as for relying on the private sector and charitable institutions, you have to think this through: If private organizations could do it, they would, but how can you if you have to rely on the ups and downs of individuals’ ability to donate, in this economy? And what if one organization makes rules that are skewed to favor some and not others?
But there’s so much waste in those social programs!
Really? Do you know how much waste there is? Where are the statistics and studies on that? Show me how a typical DayHab wastes its money. Show me how easy it is to get SSI, if you don’t meet the requirements. and do you know how scrupulously they monitor your bank account, month after month? I know this as Nat’s guardian, from personal experience, that they look very closely.
We all need to look closely at the sweeping generalizations we hear from politicians. You can go and see the good of these programs with your own eyes. Find a DayHab near you and visit it. Talk to an adult living on SSI, and find out the facts. It is possible to piece together a life with these programs and help from family, but without that, you have lives falling to pieces.
The Sunday September 18 New York Times ran a beautiful, accurate piece on being autistic and making your way in the adult world. I expect we’ll see a lot more of this kind of piece in the years to come. The article took my breath away because, of course, there are so many similarities to Nat and his friends’ lives. The wave is a-comin’… this country had better learn how to swim. And that means holding close to the programs that make it possible for adults with developmental disabilities like autism to contribute to society rather than talking to themselves on street corners (not that there’s anything wrong with that, unless it means you are indigent and unsafe). Medicaid and SSI and Social Security are not programs to be toyed with; just consider what else would happen to these vulnerable but viable human beings without them.
We have a generation of young disabled people who have grown up with education, therapy, medication, inclusion, and optimism. Who knows what they will be able to do for the world if they can lean on the rest of us for a little balance.