Housing
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.
Homelessness & Disability
Published July 18, 2009 @ 02:46PM PT
More than 40 percent of the homeless population in the US are persons with disabilities, the July 16th Disability Scoop reports. The 150-page 2008 Annual Homeless Assessment Report was issued by the Department of Housing and Urban Development. From pp. 27-28:
Among adults, 17.7 percent of the U.S. population had a disability whereas an estimated 42.8 percent of sheltered homeless adults had a disability. A disability, particularly one relating to substance abuse or mental health issues, can make it difficult to work enough to afford housing. Indeed, the higher share of adults with disabilities in the poverty population (30.7 percent) relative to the U.S. population is an indication of this difficulty. People with disabilities are an even higher share of the homeless population than the poverty population, suggesting that disabled persons face additional difficulties in gaining access to permanent housing. People with disabilities may have difficulties searching for a unit or finding a landlord willing to rent to them. Their disability may make it less easy to accommodate them without adaptive supports [my emphasis].
Also, the ability of SSI and SSDI to avert homelessness among persons with disabilities is uncertain. In 2009, the average monthly SSI payment was $50416 (or about $6,048 annually) and the poverty rate for a single-person household was $10,830. Accordingly, the average annual SSI payment is about 44 percent below the poverty level, and thus people with disabilities who lack a sufficient work history to qualify for SSDI—common among people with severe mental illness or substance abuse issues—are more susceptible to deep poverty.
As the phrases I highlighted from the report suggest, not being able to work (or not being given the opportunity to work regardless of one's skills) can make affording housing difficult (impossible); further challenges remain as far as having access to housing, not to mention housing with accommodations and adaptive supports. Dora has written about the crucial importance of the Community Choice Act in providing long-term in-home supports for persons with disabilities, to provide a way out of institutions and nursing homes. And, too, the reasons for persons with disabilities not working or not looking for work are "because they are lazy" but, for instance, "being unable to both manage basic life activities and work at the same time; i.e. not an issue, just a fact for some."
The Homelessness blog at Change.org has an additional assessment of the 2008 report and notes that what especially needs to be looked at is performance. Certainly there are programs and initiatives set up but what is actually working, and what is not?
The Road to Hell Is Paved with By-gone Attitudes and Turkey Feathers
Published June 18, 2009 @ 10:55AM PT
The exploitation of developmentally disabled men at a turkey farm was blogged earlier this year at autism, human trafficking, and animal rights. Developmentally disabled men were paid as little as 44 cents an hour and lived in a bunk house that was shut down by the fire marshal. There is no part of this that is not clearly exploitative.
And yet--the man who ran the operation, Kenneth Henry, continues to insist the operation was philanthropic despite ongoing, serious investigations. Some quotes, "These boys cannot take care of themselves...The constant care is the part that nobody wants to talk about." and "The boys take pride in their work. They don't think they're being exploited." and "It was a lot better than letting them rot in a state institution."
So what did "the boys" (who are, in fact, grown adult men) think? For a change their opinions were actually included. The men miss their friends, but none of them miss the work. If given a choice, "turkey slaughterhouse" would probably not be a top item.
Is there a limit to what should be considered an acceptable price for "constant care?"
Is exploitation only an issue when a person knows they are being exploited?
What is it that separates an institution from community living?
From within the social context Kenneth Henry grew up in, he may well be convinced that he did well for "his boys." But it would be nice to think that our culture's attitudes toward human rights has evolved just a little in the last 50+ years since Henry and Johnson first conceived their turkey farm arrangement. The fact is:
There is no acceptable price for one's humanity.
There is no excuse for exploitation.
What separates an institution from community living isn't what the building looks like or what it is called or who administrates it or how clean the rooms are. What separates an institution from community living is a person's right to choose where they live, where they work, and how their needs are managed. What separates an institution from community living is self-determination.
Time to start putting both the daily operations of Henry and Johnson's turkey farm and the sociocultural attitudes that such arrangements grew out of to rest.
Words (or Lack Thereof) from Obama and Harkin on CCA
Published June 16, 2009 @ 10:20AM PT
In a letter on June 3 to Senators Edward Kennedy and Max Baucus, President Obama wrote about health care reform from a systems-y and big picture perspective that sounds like it makes a lot of sense, for example, "In short, the status quo is broken, and pouring money into a broken system only perpetuates its inefficiencies."
However, the letter focuses nearly exclusively on general insurance reform and the desire to keep people out of emergency rooms and acute care units--and leaves out any mention of the CCA and long term supports and services. And as commenter Marsha Rose Katz on the JFA post points out, Obama has neglected in his letter the connection between adequate in-home support and keeping people out of emergency situations. This contradicts the idea that a big picture and systems-y perspective is truly in operation. One can't hope to accomplish the kind of reform in Obama's letter without addressing the CCA or long term supports and services. Katz also brings up the fact that continued neglect of CCA or similar bills is in violation of the Olmstead decision.
By contrast, Senator Tom Harkin, who sponsored the CCA and the Community Living Assistance Services and Supports Act (CLASS), has been working to get CCA back onto the agenda. Harkin participated at a rally with disability rights leaders, and was quoted as saying, "As far as I'm concerned, there is no health reform without the Community Choice Act." From the article on Harkin,
Harkin said President Obama is supportive of the Community Choice Act, though he told the senator the cost of the program must be addressed.
"Now we have a president of the United States on our side," he said.
I hope that Harkin is right and the lack of mention of CCA in Obama's letter to Kennedy and Baucus (as well as the sneaky elimination of CCA from the White House agenda) doesn't mean the president has abandoned us. However, time, and more importantly actions, will tell.
More on Farms & Intentional Communities
Published June 15, 2009 @ 02:09PM PT
A couple of weeks ago I posted about one parent's hopes to create an "intentional farming community" where her autistic son might live some day. An enlightening exchange followed about such intentional communities: While they sound like a good idea, might such communities simply be another way to segregate individuals with disabilities? Are individuals with disabilities truly given the chance to communicate whether or not they actually want, and "intend," to live there?
Yesterday's Journal-News (Ohio) describes efforts to create a "sprawling farm with gardens, horseback riding and an activity center" as "a unique home for adults with autism .... in Madison Twp." Safe Haven Farm is house up to 24 adults in 6 new houses, with one staff person for every two adults.
But how much will the farm be part of the community? It's noted that:
To assuage neighbors’ concerns, planners say most of the land will be either a farm or woodland, with tree buffers shielding the view of houses from other properties.
Sounds like someone(s) would prefer not to know about Safe Haven Farm, and its residents, or at least to keep these safely hidden away?
Should This House Become a Residential Facility?
Published June 05, 2009 @ 02:16PM PT
Residents of Black Rock, Connecticut, have expressed concerns about plans to turn a "landmark mansion," the Chimneys, into a residential facility of individuals on the autism spectrum aged 17-21. A non-profit, the Intellectual Disabilities Education Association, Inc., plans to open a school for about 50 students, yesterday's Connecticut Post reports.
My first thought on reading the article was that this was a case of N.I.M.B.Y.. But some of the objections have been raised by parents of autistic children themselves; objections range from concerns about I.D.E.A.'s tax exempt status to the location of the mansion. I.D.E.A. has so far "not shown that their students was accredited by either the city or the state, and that they would be receiving more than just training skills, which is part of the group living definition." And:
Andre Ruellan, of Gilman Street, said schooling for his two autistic grandchildren has cost their parents $75,000. "It's really something very terrible and very expensive. Economically, there may be something more. They may be able to make a profit. I feel like it will fail eventually," he said of the IDEA proposal.
Nancy Hadley, the city's former director of planning and economic development and moderator of the BRHA meeting, said the taxes on the property now are more than $50,000, but the IDEA proposal would take the property off the tax rolls.
City resident Joel Gonzalez said he has a 7-year-old autistic daughter. "This is the worst place you can put an autistic facility. My daughter is fascinated by water. This place is right next to the water," he said.
It's Gonzalez's comment that I particularly concur with. Put Charlie near a body of water and it's more than likely that he'll try to put himself into the water (further reasons as to why I'd never want to have a house with a swimming pool). The property in question is quite large, apparently having (as the photo shows) a swimming pool and
22 interior rooms -- including 11 bedrooms, eight full baths and two half-baths -- a sweeping staircase, a 54-foot long reception hall, a six-car garage, built-in swimming pool and servant's quarters
Sounds like it would at least have to have extensive renovations prior to being converted into a residential facility?
Further reason to worry about the options for Charlie when he is older.
(Is this all getting too depressing or what?)
(On the other hand, now that I think of it, he might like learning how to paint and assist in fixing property.......hmmm.......)
A Time of Perpetual Transitions: Adolescence
Published June 05, 2009 @ 12:35AM PT
The University of Georgia has received a four-year, $800,000 grant from the U.S. Department of Education to be used to train teachers to teach high school students on the spectrum. Exactly what that training will involve isn't too clearly specified; according to yesterday's Fort Mill Times:
The university will use the money to fund fellowships for graduate students to take specialized courses and spend time in public high schools in Gwinnett, Clarke and Madison counties through UGA's Collaborative Adolescent Autism Teacher Training program. The university had been focusing on teachers who work in elementary-age classrooms but wants to expand its reach to high school.
Yes----as my son has advanced from elementary to intermediate to middle school, it's often seemed that (after Early Intervention and preschool) there's a tendency for people to throw their hands up in the air and say, "Now what? We don't know?". I know that parents of newly diagnosed, young children feel lost and helpless (we certainly did). Early Intervention is pretty well established here in New Jersey (I even drove by a sign yesterday for a center that provides "Early Intervention" specifically). When Charlie was about 7, there was a lot of confusion about what sort of classroom he needed (he still needed 1:1 teaching and ABA, among other things); the result of this was that we moved to another town so he could be in their ABA program. He's almost made it through his first year of middle school and talk about tough!
Aside from the usual "stuff" (never a dull moment around here---what would life be like without seeing the phone number for the school flash on my iPhone screen), he transitioned to a huge (1400+ students) middle school and became an adolescent seemingly overnight, or at least there were times this year when Charlie seemed to have grown an inch in the past 24 hours. Now we've thinking a lot about sex education and safety.
So it's great---it's necessary---to be training teachers to teach high school students on the spectrum but I'm going to make a big plug for more training for the middle school years. After the past year, I've started to feel that these are the make it or break it years, so to speak.
Being in middle school = adolescence = being in a state of perpetual transition.
