More About Home Care

Rick Perry loves the part of Obamacare Peggy Noonan hates

Ezra Klein, The Washington Post - August 22, 2013

Another followup on the Community First Choice component of the Affordable Care Act, from the "Wonkblog" …

"The program is so irresistible that even Texas Gov. Rick Perry is asking if his state can be part of it."

There's one aspect I'm still not clear about. From what I've read so far, Community First Choice will fund home care that is provided for pay by family members, but will require there to be a third-party involved who isn't a family member in order to guard against conflict of interest. That seems to be the case when the person with a disability is severely cognitively impaired and has a guardian. But what about the majority of home care users who make their own decisions? Will they have to have a third-party manager or watchdog if they want to hire their mother, father, sister, brother or spouse? Personally, I think it's a good idea, but I don't think it should be required. I've known people who are fine with everyday direction of their own care, but frankly could use some help and support to deal with really tricky personnel or administrative problems. I've also known plenty of home care users who are more than capable of running their own show, and dealing with whatever problems arise.

"Wonkblog" Kicks Ass

Peggy Noonan attacks Obamacare for doing what Peggy Noonan wants Obamacare to do

Ezra Klein, The Washington Post - August 20, 2013

This is an outstanding article that almost entirely clears up the apparent issue I wrote about a few days ago, about how Obamacare may or may not affect parents being paid to provide home care to their sons or daughters with disabilities. In short, the problem originally cited turns out not to be a problem at all, and it's possible that anxiety about the confusion was whipped up on purpose to discredit the Affordable Care Act itself.

Obamacare will extend good coverage of home care to many more people, in states where it is now absent or minimally offered. It will allow family to be paid care providers. At the same time it will require a non-family member to oversee design of the care plan, thereby at least partially solving the potential conflict of interest problem, as well as providing possible troubleshooting should family care take a sour turn.

I can't emphasize strongly enough that anyone interested in how the Affordable Care Act develops should read The Washington Post "Wonkblog" daily. They are providing in-depth, dispassionate, and very readable analysis of every aspect of the law, every step of the way. It's an essential resource.

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P.S.: If you want to know how some piece of health care policy will affect people with disabilities, check to see what ADAPT thinks. They know their stuff, and when it comes to partisan politics, they are entirely agnostic ... or to put it more crudely, they don't give two shits about Democrats or Republicans.

That Nasty Letter ...

As suggested by one of my Facebook friends, I'm not going to post a picture of the nasty letter from "one pissed off mother", aimed at parents of a child with autism who lives in her neighborhood. I will link to it, however, so you can read it if you want. Be warned: the letter isn't just insensitive, it is filled with hate and rage, and includes eliminationist language.

Ordinarily, I don't get into news stories and social media memes in which everyone piles tons of fairly obvious scorn upon specific individuals who are especially ignorant or depraved. I'm more of a systems advocacy kind of person, and hating on even very hateful individuals, I think, tends to divert energy away from dealing with institutional problems.

That said, I do think that this is an exceptional case. The letter clearly and specifically progresses from the writer's personal annoyance, directly to some very disturbing life and death ideologies. It's considered bad form to invoke Hitler in a debate, but in this case, the Nazi comparison is quite apt.

I'm not genuinely afraid that this signals some fundamental societal shift in that direction. But it does put the lie to a pretty common fallacy among some of us in the disability community, myself included … that ableism is mostly benign ignorance, and that people don't really "hate" us. "Pissed off mother's" letter is a useful reminder that not too far underneath our veneer of enlightened progressivism, there's still a lizard brain that is disgusted by and afraid of "others". And people who look funny, move funny, act funny, and sound funny are definitely "others."

Don't get me wrong, I'm grateful for the veneer, and I think lots of people don't react negatively at all to people with disabilities, even down in their lizard brains. But we'd be fools to think that a mere 50 or so years of relatively enlightened behavior and policy have entirely undone the impulses that led to forced sterilization, warehousing, freak shows, and the Nazi T4 program.

Midweek Musical Interlude

I'm listening to the new Superchunk album, "I Hate Music", so I figured it would be a good time to post their fantastic cover of The Cure's "In Between Days".

The Pros and Cons of Sexy Photos

This blog is pretty weak on photographs. That's partly because I'm a terrible photographer, and partly because I haven't completely figured out the legal and ethical issues involved in reposting interesting photos I see on other disability-related websites. Do I need permission to post them on my blog or website? Permission from whom? What if I provide a link back to the source, is that enough?

Still, just seeing the amazing photos other peoples' blogs and websites is part of what got me excited about disability art and expression again, after a long period of feeling stagnant about them.

For example, there's the Tumblr blog, Disabled People Are Sexy. It's worth a look.

What I like about these photos is that they call up lots of strong emotions in me … a wide variety of feelings, but none of them anything close to pity, revulsion, or depression.

Of course, sexy pictures of people with disabilities may simply objectify and marginalize in their own way, just as pictures of pitiful children in braces did back in the days of Polio, and toddlers with leukemia do today on Facebook. The difference, I think is that it seems at least like the people in the "Disabled People Are Sexy" photos want to be photographed, want to be seen. Being in these photo shoots seems to be liberating for them, not humiliating. Hard to say though. It's probably a good idea to keep an open mind in every way with these pictures.

To that end, I also recommend reading a reply by the blogger to a negative comment:

"To The Anon Who Had A Problem With Me Reblogging Posts".

How Do You Fire Your Family?

Federal officials reverse course on disability provision of Affordable Care Act

Yuxing Zheng, The Oregonian - August 16, 2013

I think people who use in-home long term care should be allowed to hire family to provide care if that's what they want. My only questions for those who do would be:

Could you fire your Mother, Father, Sister, Brother or Spouse if they were doing a crappy job?

and

How will you feel about living with your family, depending mainly on them for your day to day needs, when you are 25, 30, 40 years old?

Accessibility vs. Accommodation

Accessibility is what we should expect to be ready for us without asking or planning ahead. It can be provided by following an easy to implement set of standards and practices that make "adaptation" unnecessary. We can benefit from accessibility without announcing or explaining our disabilities.

Accommodation is for adaptations that can't be anticipated or standardized. They are different for each individual. Although we should expect there to be a general willingness to accommodate us wherever we go, we can't expect actual, specific accommodations unless and until we ask for them. We do have to announce, and may have to explain our disabilities a bit in order to get accommodations.

Accessibility is the baseline of equal service, and accommodation is the second step to take when accessibility alone isn't enough.

Wedding Toast

I attended a wedding yesterday of a fantastic young man and woman … the bride being my brother's wife's daughter. The ceremony and reception were both held at a fairly high-end Vermont resort, and apart from the fact that the festivities themselves were beautiful, the accessibility and accommodations were really very good.

In fact, there's not a whole lot to report, except for some small details so I'll just bullet point them:

• When I checked in to get my hotel room on Thursday, the desk clerk showed me on a facility map where my room would be and how I could drive my car around to reach it. He said he'd have someone meet me over there to get my luggage out of my car. Before I could even get halfway there, the guy flagged me down and said they had reassigned my room to a location they figured would be easier for me during my stay … closer to the action so to speak. Plus, the room as an upgrade, for which they did not charge me. They did this without asking me. People with disabilities usually say that people should ask us before diving in to help, but in this case, I appreciated it.

• There were a lot of small changes in level throughout the resort, but they all were either without steps at all, or steps with accompanying ramps.

• The only bona fide barrier I saw was at the place where guests exited the reception hall to walk across to where the outdoor ceremony was held. There were three steps. I don't especially need a ramp for just a couple of steps, but I did notice it. The steps were pretty shallow though, and I'll bet that they have a temporary ramp available if alerted in advance.

• The bride's grandmother was there using a wheelchair most of the time. She and hurt her knee recently. From where I was sitting for the ceremony, I couldn't see how she handled the steps, and I think she may even have walked "down the aisle" on someone's arm. I might have been offended on her behalf if she were a full-time wheelchair user, but somehow the fact that her impairment was temporary made me think differently about it. For a temporarily disabled person, I guess I'm more understanding of the desire to shed the trappings of impairment and make a "normal" appearance in situations where everyone is watching.

• I didn't notice any ableist social blunders at all, from either the guests or the staff.

I really think that when it comes to big, complex social events like weddings, a relative lack of small annoyances has just as much positive effect as the absence of major barriers and offenses.

A Big Victory for Disability Rights

Disabled Veteran Wins Landmark Discrimination Suit Against FBI

Erik Sherman, AOL.Jobs - August 13, 2013

Outstanding news! This has all the elements to be an excellent case study for ADA and disability rights training. It seems like an especially sharp and clear example of a person with a disability being held to an arbitrary and unnecessary physical requirement, not to mention intimidation and gratuitous personal prejudice. It's the kind of situation where a lot of people would start out assuming the FBI was right, but as soon as the specifics are revealed, it becomes clear that they weren't just wrong, they were villains.

Pass The UN Treaty

Obama on Disability Treaty: 'Get It Done' - Disability Scoop

Hellomynameismaddy - August 13, 2013

I've been thinking about writing a pitch for passing the UN Convention on the Rights of Persons with Disabilities, but never seem to find the time and tolerance to deal with the forces of stupid that defeated its ratification by Congress the first time. This linked Tumblr post is a terrific summary that will serve the purpose.

Of course, I just have to add one more point ...

As noted in the post, one of the biggest reasons ratification failed is because homeschoolers … especially Christian conservative homeschoolers … were told that wording in the treaty about "best interests of children" would be used to overrule parents' decisions about raising their children with disabilities. I don't think that it's enough just to point and laugh at this idea. If you have a child with a disability, you don't have to be a fundamentalist Christian or an ideological conservative to develop an ambivalent attitude about government programs and public schools. Let's just say that Special Education as it is practiced is complicated, delicate, often infuriating to deal with, and produces often disappointing results. Which is not to say that it is wrong or evil or corrupt, but that it is difficult, sometimes impersonal and unresponsive, and weighed down by administrative burdens and old paradigms. Lots of parents, frankly, don't trust their schools and the governments that fund them, so it probably doesn't take much in the way of conspiracy theorizing to get their hackles up. Plus, parents of kids with disabilities tend to feel scrutinized and judged even more than most parents, so I think that they are susceptible to political campaigns aimed at fanning their distrust of any sort of authority.

Politicians know this, but they can't say it or even hint at it because they simply can't be heard criticizing or questioning the infallible wisdom of parents. 

It's not the concern that's laughable, but rather the fact that the possibility of this treaty having any of the rumored effects is so remote as to be nearly zero. Meanwhile, around the world, real-life policies and cultural traditions impose truly medieval hells on millions of children with disabilities, sometimes with full support of parents who literally may not know any better, or who have less than zero influence over anything … a level of powerlessness that the most beleaguered advocate in the US can't begin to fathom.

Anything that alleviates this by pointing in a better direction is worth doing.

ConfessYour ...

I'm doing some grant writing work today and tomorrow, so not much blogging from me. In the meantime, here's something to think about.

Over the weekend people were riffing for awhile on the hashtag #ConfessYourUnpopularOpinion. Most of what I saw was TV and movie critics talking about highly acclaimed titles and actors they actually don't like, but it got me thinking of how this could prompt a rich conversation on disability life, culture, and issues.

What beliefs on the subject do you have that you think others with disabilities would disagree with?

I'll bet that a lot of us would be surprised to find that at least some of our opinions aren't as "unpopular" as we think they are.

Keyword Search

I really think that my much discussed (by me), and perpetually in development website is going to focus a lot on disability in popular culture … TV, movies, books and comics, music, radio and podcasts, etc. On a moment's notice, I can generally brainstorm maybe 30 - 40 shows, films, and characters with a disability disability connection, but I figured it might be interesting to do some keyword searches on the Internet Movie Database, to see how many references turned up for some of the main disability-related terms:

disability - 670

handicap - 194

deaf - 213

blind - 248

I've got some catching up to do.

The President's DAV Speech: Pretty Good

I thought this was a very good speech. He didn't break any new ground, and there weren't any flashes of great insight, but the speech was very well balanced. I'd say roughly 60% of it was about specific policies 30% was inspirational, bordering on sentimental, and only about 10% of the speech was what could fairly be called political … in the sense of serving the President's agenda. I don't know what people there thought, but I think that's a very fair balance.

The policy portion broke down into 5 main priority areas:

1. Adequate budgets / resources … a somewhat political pitch to end the sequester and get Congress to make a real budget deal.
2. Ensure veterans health care … including specific reference to Agent Orange, Gulf War Syndrome, PTSD, prosthetics, mental health and the suicide epidemic, help to caregivers and families, and new efforts to provide more targets healthcare to female veterans. The Affordable Care Act was mentioned only as a reassurance that it wouldn't change anything for veterans who already have insurance, but might help those who don't acquire it.
3. Reduce the claims backlog … reductions have not moved as fast as he wanted, but the backlog is shrinking. Also spoke of improving enrollment systems so that now and in the future, claims will be processed correctly, the first time.
4. Rights and dignity of disabled veterans … ending homelessness of veterans, and mention of the need to pass the UN Disability Treaty, another somewhat political pitch, but not heavy handed.
5. Education and jobs … efforts to curb shady education pitches, and increase Federal hiring of disabled veterans, including a push for a Veterans Job Corps that would organize public service around the country.

Some other things I noticed in the speech:

• I wonder why Sgt. Perez didn't choose to have his leg amputated, rather than endure over 30 surgeries? I believe that in many similar cases, the recovery is much faster and more complete.
• Come to think of it, none of the individual stories in the speech included making effective use of wheelchairs or other assistive devices, except temporarily on the way to "recovery".
• American Veterans Disabled For Life Memorial??? Is that really its name? Why "for life?"
• "Rather than be defined by what you lost … by what you can't do … you inspired Americans by what you can do."
• The President made several references to veterans helping each other … by telling stories of three DAV employees, and by other examples of peer support, including disabled veterans reaching out to people injured in the Boston bombings … "Dedicated not just to your own recovery, but to taking care of each other."
• Regarding the suicide epidemic, the President said he wanted to make sure that, "Those who are hurting know that asking for help is not a sign of weakness; it's part of staying strong.
• Towards the end, the President did mention people getting on by using prosthetics, wheelchairs, walkers, homes adapted for accessibility, and one-on-one personal care. And at that point I realized that he didn't make a single reference or even hint at older-style permanent VA hospitals or institutions. It was all about people going home again, still recovering, but in their own homes and communities, with their families.

Good job, I thought, with an audience that's not a guaranteed slam dunk for any President. I'd like to see President Obama address a broader disability audience. Also, as I wrote a couple of weeks ago, I wish they could figure out a way for him to attend a breakout session or two at these types of conventions … so he could hear some of what rank and file members are learning and worried about.