daily living
PDA Yay
Published July 27, 2009 @ 04:58PM PT
An article from the Star Tribune (MN) iPods may help Asperger's kids navigate life mostly highlights the use of iPods for social prompts (interesting correlation perhaps with the Scientific American story on verbal prompts for AS which deserves a post all its own). It may be fair to expand the scope of usefulness to Personal Digital Assistants (PDAs), prompts, and the autistic spectrum in general.
A PDA with calendar, tasks, and reminder capabilities can be great for those of us with little sense of time. Many organizational programs have graphical capabilities for people who don't resonate well with numbers or words. Notes, tasks, and reminders also can also substitute for short term memory. The awesomeness of PDAs with a built in GPS is invaluable for those of us with a tendency to confuse easily, especially in new places. PDAs that take pictures can help with memory, navigation, orienting in new places, all sorts of things. And PDA applications with favorite sights, sounds, and games can soothe the nerves. Best of all for anyone with executive function issues is that there is only one does-it-all device to keep track of, not a ton of separate calendars, notebooks, devices, etc. to lose, forget about, and curse.
As a long-time PDA user (as soon as they became marginally affordable over a decade ago), I am quite serious when I tell people my executive function skills are present not in my brain, but in my PDA.
The obvious point here is that a PDA can be an invaluable piece of assistive technology for autism-specific "stuff." Plus, PDAs are mainstream, even "cool," so there's no weird looks for using one.
The less obvious point is that it can be beneficial to think about what sort of tool can give a person a skill they don't otherwise have, rather than pouring energy into trying to find a way to make that person have the skill unassisted. What actually works is more important than appearances.
Down on the Urban Homestead (and in the Kitchen)
Published July 27, 2009 @ 12:43AM PT
In thinking about what my son might be doing and even where he might be living, I've been reading some about farms and intentional communities. One concern that's come up about such living situations, and about "intentional communities" in particular, is whether or not they're really segregated institution-like places, where individuals with disabilities live apart from the greater community.
The July 5th New York Times Magazine looks at farms in the city that are quite beyond the proverbial plot of vegetables. Street Farmer profiles Will Allen and his Growing Power farm in Milwaukee which has"14 greenhouses crammed onto two acres in a working-class neighborhood on Milwaukee’s northwest side, less than half a mile from the city’s largest public-housing project. A second article, Home Sweet (Urban) Homestead, looks at farming that's going on in "a gritty block in Oakland, Calif. — the kind of neighborhood that quickens your step even on a bright Sunday afternoon," in the "urban homestead" of Anya Fernald: "In Oakland, where backyard menageries and D.I.Y. charcuterie are the new garage band, the term 'urban homesteading' doesn’t need an explanation. 'It fits into the Oakland sort of self-defined vibe or aesthetic of doing things from scratch and being kind of hard-core,'" as Fernald is quoted.
Both articles are specifically about the numerous benefits---for health, jobs, self-sufficiency, more---of such urban farms. Reading about Fernald's "homestead" in Oakland, I'm reminded very much of the "urban farm" my grandmother, Ngin-ngin, kept going on the porch of her second-story duplex on Madison Avenue and in the yard below. When my father was growing up, they grew vegetables and kept chickens (all of whom wandered away one day when someone left the gate open; I've never been able to get the image of a line of chickens wandering the streets of Oakland by the Oakland Museum and the Alameda County Courthouse out of my head). Ngin-Ngin made everything, from endless types and amounts of food (I was going to write "Chinese food," but that seems somewhat repetitive in this case) to moonshine to clothes, blankets, you name it. (There's also a fireworks angle, but I won't get into that now; it is the fifth of July.) If she didn't get vegetables from the yard ("urban homestead"), they came from Chinatown's markets and, of course, from Tai Wah, which Yeh Yeh, my grandfather, owned.
Suburban New Jersey---I mean, this is the Garden State---offers a few more places to plant some seeds and let a garden grow. As I've learned from making brownies with Charlie, the process is the thing, and why not show him where food (well, some types of food) come from?
Charlie is definitely curious about food preparation.
Longterm Care: A Longterm Issue
Published July 23, 2009 @ 02:26PM PT
In Derby in the UK, the City Council is planning to turn a former Viking village into a day center for adults on the autism spectrum. As reported in yesterday's Derby Telegraph, plans are in the works to close two smaller centers and use the funds from selling them to renovate the Viking village. On the one hand, the opening of a new facility that might offer better options seems hopeful, but locating it in a site meant for tourists (and a "failed tourist attraction" at that) has some unpleasant connotations. Will the new facility be integrated into the surrounding community, or is it set apart and separate?
Here in New Jersey, Disability Rights New Jersey is suing the New Jersey Department of Human Services on behalf of the family of a 41-year-old man who lives at the Hunterdon Developmental Center in Clinton, yesterday's Star Ledger reports:
Rosamund and Daniel Caliendo of Hampton said they arrived at the Hunterdon Developmental Center in Clinton for a holiday party on Dec. 1, 2007, to find their son, Damian, in his electronic wheelchair facing a wall with the chair's front wheels suspended in the air and the tray table jabbed into his stomach.
Their son, who cannot speak and is diagnosed with cerebral palsy, a seizure disorder and other medical conditions that required neck surgery a year earlier, "was scared to death he was going to fall," his mother said. No one at the party came forward to explain what happened to Damian, who has lived at the institution for 30 years. The family believes an employee placed him in an unlawful restraint to punish him. They filed a complaint and demanded an investigation.
The Caliendos were only given a summary of the report.
I'd be tearing my hair out if that was all I was told I could know about such a document regarding my son.
And on the other other hand, it's possible that the new center in Derby might be better than alternatives. The July 20th Disability Scoop reported that some two dozen families in Canada have had to relinquish their parental rights and, in effect, make their children with severe disabilities wards of the state.
We've got too long a way to go to figure out appropriate, safe, sufficiently staffed and well-supervised options for individuals with disabilities who need this care, and to make it clear, families and caretakers must be included in every way.
Financial Abuse
Published July 14, 2009 @ 04:00PM PT
Abuse most commonly conjures images of physical or sexual violence or verbal taunting. But there are many types of abuse, and one that's come up here before but never in its own post is financial abuse.
In Austin (TX), a woman who ran several group homes has been accused of exploiting residents by opening up credit card accounts in their names and using those accounts to make her own purchases. The woman, who has a list of prior convictions mostly for theft, is still at large.
This has echoes of the woman who stole thousands from the people she "helped" with their finances, local to me (OR). That woman was convicted and sentenced to a year in jail.
Such things don't only happen to people who are unable to manage money independently either. One of the panel speakers at the Megaconference personal care assistant session is completely capable of managing her own finances under typical circumstances. But a PCA once feed her double medication until she became so disoriented that the PCA was able to extort literally all of her money. The speaker ended up having to file for bankruptcy.
What to do about this? Especially for those of us who have no clue how to tell if finances are being managed properly or not?
A background check of the sort that any federally run service organization requires would have helped out with the woman in Austin. But not with the woman in Oregon who had no prior crimes and worked for a reputable service organization.
What else can we do to protect ourselves?
Quality Staff or Any Staff?
Published July 14, 2009 @ 09:22AM PT
Quality Staff or Any Staff?
The California Regional Center which both Kristina and I blogged about in rapid succession last week has decided to return the money to the state. Whether this decision was good or bad--like the initial decision to spend the money on staff pay raises--is (as I stated in my last post and readers also pointed out) ambiguous.
On one hand, there is a connection between rate of pay and quality of worker. Additionally, there is a connection between rate of pay and employee morale. Even someone with no sense of money, number, or time like me has been known to do crappy work with a bad attitude when being insufficiently compensated for the work, financially or otherwise. Just loving the work isn't always enough, and not everyone in the service field really loves the work either. And, trying to avoid personal details here, my experience has been that $60 an hour assistants are a whole lot more helpful to me than $10 an hour assistants.
On the other hand, it doesn't matter how quality the staff are if you don't actually get any staff. So having any staff to pay at all is arguably a prerequisite to discussions about pay raises. (Cuts to services of course affecting the providers and the end users alike.)
Is it better for a small number of well paid staff to provide services to a small number of individuals but at the expense of quantity? Or is it better for a large number of poorly paid staff to provide services to a larger number of individuals but at the expense of quality?
What's best of course is a large number of well paid staff providing services to a large number of individuals--both quality and quantity.
But does that ideal have any real impact on the reality of the situation in California? Are there any "good" answers regarding the situation in California?
Where Should the $$$ Go To?
Published July 10, 2009 @ 02:09PM PT
Should 350 employees of the Fresno-based Central Valley Regional Center have received bonuses of $1400 each, at a time when the state of California is facing a major fiscal crisis----a crisis that will most likely substantial cuts to programs for individuals with developmentally disabilities? The July 7th San Jose Mercury-News reports that all of California's Regional Centers were forced to cut their budgets by 3 percent, after the legislature was unable to fix the state's budget deficit.
"We're not saying that their staff don't deserve raises—our staffers would love a raise, too," said Ron Killingsworth, who represents the Central Valley Caucus of the California Disability Services Association. "But to spend half a million dollars on employee bonuses when we're facing huge cuts to programs for the developmentally disabled? We just don't understand."
The grandfather of a 9-year-old autistic girl, Chuck Genseal, is quoted as saying "'They're giving their employees bonuses at a time when the disability community doesn't know if they're going to have a safety net at the end of the week.'" Regional Center administrators argue that the bonuses will help employees with increased health-care and other costs and that "'there are tough times ahead.'"
The parent (bill-paying, bank account balance watching) part of me says, of course, the dollars should go to the people who need the services---seems like a no-brainer. Then other realities come to mind, like the therapists who've told us they had to stop working to "find a better paying job," or my extreme annoyance at seeing how much 1-on-1 aides earn---the very individuals who spend hours after hours with my son, patiently teaching him, helping him through his anxieties, and much more---versus, well, people who choose other more "prestigious" careers. If there aren't staff for programs, doesn't that mean there won't be programs? Or could the funds have been given directly to individuals with disabilities, so they could get the supports and services that they need?
And were individuals with disabilities asked about what they thought about all this?
West Virginia Legislation to Establish Trust Funds
Published July 03, 2009 @ 02:20PM PT
Yesterday in West Virginia, Governor Joe Manchin signed into law new legislation that is designed to encourage the creation of trust funds for the future support of children on the autism spectrum. As reported in Metro News, under the new legislation, families with autistic children will be given a tax credit of up to $2,000 a year for contributions made to trust funds which are to be used when the children become adults; this new legislation is the "first of its kind in the country." Says Barbara Becker-Cottrill, Executive Director of the Autism Training Center which is located at Marshall University in Huntington:
"When you have a child with autism, you've got, really, constant worry about what's going to happen to your child when they become an adult......It's 24/7 concern and, then, the true worry is what will happen to them if you're not there to care for them and love them?"
....
"This bill will provide, not just the tax credit for families in the here and now, but I really think it's going to give our families a sense of security, a sense that the future is a little brighter for their child when they become adults."
That's the kind of forward-thinking legislation one hopes to see more of, for the times when children become adults, when everything isn't shiny anymore.
