More Debate Coverage

My review of the 3rd Democratic Presidential Debate is up at the Center for Disability Rights blog:

The Full Plate and The Missing Topic

… and Emily Munson’s take on the same debate:

Three for Three: All the Candidates Disappointed

It’s interesting that we both took notice of the candidates’ campaign against opiates. It might be a thing, and it’s certainly the kind of issue that can unique disabled people across party and ideological lines.

----------

[Facebook] [Twitter] [Podcast] [Support]

More Debate Coverage

My take on the 5th Republican Presidential Debate is up at the Center for Disability Rights blog:

Safety At All Costs: Safety At All Costs Republican Presidential Debate: December, 15 2015

Emily Munson also wrote about the same debate for CDR:

Republicans Strategize and Engage: The National Security Debate

Our politics are different, but I think our posts go together pretty well.

----------

[Facebook] [Twitter] [Podcast] [Support]

Mocking Trump

Check out my take on Donald Trump’s weird gestures over the Thanksgiving Weekend, at the Center for Disability Rights blog.

----------

[Facebook] [Twitter] [Podcast] [Support]

More Debate Coverage

My review of Saturday night’s Democratic Presidential debate is up at the Center for Disability Rights website:

Disappointing, But Not A Waste Of Time

November 17, 2015

There’s also a great piece on the same debate by Emily Munson:

Explosions, Verbal And Otherwise

November 17, 2015

----------

[Facebook] [Twitter] [Podcast] [Support]

Debate Coverage

I have started writing blog posts on the 2016 Elections for the website of the Center for Disability Rights in Rochester, New York. Go check out my first two, about the 3rd and 4th Republican candidate debates.

And How Will That Work For Disabled People? The 3rd Republican Debate

October 30, 2015

It’s Up To Us

November 11, 2015

I’ll be writing about the 2nd Democratic debate this coming Saturday, November 14.

----------

[Facebook] [Twitter] [Podcast] [Support]

Throwback Thursday

One year ago in Disability Thinking: Questions For Candidates.

These questions hold up pretty well. Disability issues don’t change all that much from one election to another. General Election years are a bit different, but I expect most of these issues will still be relevant next year.

---------- 

[Facebook] [Twitter] [Podcast] [Support]

Disability Politics

I am working on some kind of blog post or article on evaluating election candidates from a disability policy perspective. I’m not ready yet to come out with a definitive list of questions we can pose to candidates, but I have a few preliminary thoughts:

- One of the biggest barriers for the disability community in mainstream politics may be that most of us find it hard to connect our lived experience of disability with either concrete policies or political philosophy. It's second nature for disability activists, but most of us aren't activists. Most disabled people just live their lives and deal with barriers and frustrations in very immediate, personal terms. We need to get into the habit of asking ourselves what kinds of public policies would improve our lives as disabled people. We need to practice asking ourselves, and each other, so we become better equipped to ask the people who want our votes.

- Disability issues should rank higher on the priority lists of candidates, political commentators, and the voting public. However, I don’t think disability will ever rank among the most important and widely discussed issues in American politics. I’m not even sure it makes sense for us to argue that disability should be a top concern.

- I do think it's realistic and completely appropriate for the disability community to someday be a more widely recognized constituency than we are now. Candidates should care about connecting with us and developing distinctive policies that address our needs and concerns … not because they matter much to the country as a whole, but because we are a bona-fide “special interest group” worth courting. There’s nothing inherently wrong with being identified this way. Our concerns are more important than people realize, but they are mainly our concerns, mostly affecting disabled people and their families. Disability issues don't have much relevance for everyone else. That doesn’t mean they are unimportant.

- Most campaigns for national office eventually get around to issuing disability-related policies and positions. Most include “People with Disabilities” on their websites, usually on a drop-down menu of issues or voter groups. Some campaigns take longer to do this than others. Some do it better than others. The real problem is that what they say tends to be generic and non-specific, more about using the right code words and endorsing the usual disability activist themes than about suggesting actual policies. I may feel differently by November 2016, but right now I would much rather hear appalling stuff about lazy cheaters on Disability from someone like Rand Paul, than entirely predictable, or maybe patronizing fluff from a candidate I would otherwise probably vote for. There are legitimate differences of opinion on disability issues. It is better for all of us to discuss them openly and "have it out" than to stick only with candidates who use the right words and an encouraging tone, but have nothing to say.

- Our top priority should be to force candidates to explain how their political philosophies would translate into different approaches to disability policy. If Donald Trump’a positions on disability issues turn out to be not much different than Hillary Clinton’s, or Marco Rubuo’s than Bernie Sanders' then something is wrong. If, on the other hand, we can easily identify which of two unlabeled disability statements is Trump’s and which is Clinton’s, then we will have made some progress, no matter what the policies actually say.

- Despite what I said about disability being a “special interest,” we should connect the dots for voters and candidates between disability issues and the more widely discussed topics that dominate election campaigns. Disability issues connect naturally and in illuminating ways with entitlements, poverty and inequality, employment, healthcare, transportation, education … not to mention infrastructure, law enforcement, and civil rights. Of course, it’s been said a thousand times, but it’s worth repeating that many key disability issues are also aging issues, which demographics suggest should be a much bigger deal in politics as it is.

There will be more about all this from me, I am sure.

----------

[Facebook] [Twitter] [Podcast] [Support]

Keep Your Eyes On The UK

There’s probably going to be some kind of engineered showdown over funding Social Security Disability here in the United States. Disability activists are going to be pulled in a few different directions. Should we join the effort to “reform” the program and risk validating benefit cuts and narrowing eligibility? Or, should we line up to defend the program as it is, and miss the opportunity to reduce work disincentives and make other improvements we’d actually like to see?

Before we get too far down the road, we should pay careful attention to what’s been happening with “welfare” cuts in the UK, including cuts specifically affecting disabled people:

"One thing the welfare bill accomplishes is to put people who have failed a fitness to work test on to the same payment as people who have passed it, like some tent-revivalist preacher tipping sinners out of wheelchairs and screaming “Walk!” Who would have thought that electing people who hate the welfare state to run our welfare state could go so badly? In practical terms this change means people with things such as MS and Parkinson’s will lose £30 a week. That extra £30 a week was there because, sometimes, chronically ill people’s bodies don’t work so well and they might have to get a bus or a cab or pay the babysitter to stay for an extra hour so they can get to and from the latest humiliation from the Department for Work and Pensions."

This is from an angry article in The Guardian about the Labour Party, the UK’s main left-of-center party that historically has fought for the welfare state and defended the UK’s poor and working class. It’s roughly … and I mean very roughly … equivalent to the US’s Democratic Party. Yet, apparently they are pretty much going along with the Conservative Government’s austerity policies, which include a two-faced stance on disability policy.

Publicly, they use the language of empowerment and confidence in disabled peoples’ ability to work and be self-sufficient, while policy-wise they cut benefits and make everyone who gets benefits prove to poorly-trained bureaucrats that they really do need their government support. Meanwhile, they nudge and wink and tisk-tisk about “welfare scroungers."

It sounds familiar. The same kind of thing could easily happen here, if we aren’t very careful.

By the way, £30 a week, £120 per month, is equivalent to almost almost $47 per week, $187 per month. That's more than the cost of a few lattes.

----------

[Facebook] [Twitter] [Podcast] [Support]

What’s The Next Big Victory for the Disability Community?

The Supreme Court’s decision affirming gay marriage nationwide has me wondering whether there are remaining unresolved issues that are as significant for disabled people as gay marriage is for the LGBTQ community.

The Americans with Disabilities Act of 1990 qualifies. So does the Olmstead Supreme Court decision that came out of the law later. Although full implementation is very slow and ongoing, those are milestones of our past. What big items are on the disability community's "To Do List?"

Some of my Twitter friends and fellow disability bloggers are noting that many disabled people still can't marry, for legal and bureaucratic reasons. For example:

@POTUS next step is to remove the penalty so people with disabilities can keep needed services and still get marry http://t.co/TKYXHdSYAb

This tweet referrs to “marriage penalties” built into Social Security and other income support programs that make it practically impossible for many of us to marry. Then there are the developmental disability support programs and "group homes" that discourage or outright prohibit marriage and cohabitation.

In both cases, it's not that marriage is illegal for disabled people, it's more like an official disincentive, sometimes an extremely powerful one, that makes marriage a practical impossibility. IF you choose to get married or live together as a couple, THEN we will reduce or stop your support services.

In both cases, it’s also entirely possible to fix the situation by passing laws to address the problem directly. A law could make it illegal for developmental disability programs to refuse service to clients/consumers who decide to marry or live together. A law could specifically affirm cohabitation rights in any sort of long term care facility, including “group homes.” A change in law or regulations could make it so individual Social Security benefit amounts and eligibility for other programs wouldn’t change when recipients marry.

As potential victories go, these are bit wonkish and hard to explain. They aren't as emotionally resonant as yesterday's marriage equality victory, but they probably should be.

A few other longstanding disability issues come to mind.

Ending developmental disability exceptions to minimum wage would be another major victory for the disability community, and possibly more feasible than closing all sheltered workshops. Decisively undoing work disincentives would be fantastic, too, but probably complicated and hard to achieve in a political environment where lawmakers think we are paying out too much in disability benefits. Progress there may have to come piece by piece, one careful legislation at a time.

“Entitlement” is a dirty word these days, both politically an socially. But we might want to rethink that, an explore whether disabled people should have an absolute entitlement to certain key assets … health care, higher education, a drivable car. Solidifying a right to any one these would be a major victory and game-changer for disabled people.

Most of the rest of our problems are either social, and not responsive to legislation … like everyday ableism and workaday bureaucracy, or related to existing laws that suffer from partial enforcement … like the accessibility provisions of the Americans with Disabilities Act and the Olmstead Supreme Court decision.

Aside from dealing with marriage penalties and barriers, and aside from better ADA and Olmstead enforcement, what new disability rights milestones are on the horizon? What major, specific changes do we want to celebrate in the next few years?

----------

[Facebook] [Twitter] [Podcast]

Social Security Reform - Followup

Report: Social Security Overpaid Disability Benefits by $17B

Stephen Ohlemacher, Associated Press - June 5, 2015

It looks like there is somewhat more credible evidence now that at least some of the concerns about Social Security Disability are warranted. $17 billion is a lot of money, though it’s worth noting that this is the estimated total overpayment over ten years.

Still, it underscores the importance of disabled people being involved, and maybe taking the lead, in reform efforts. The article mentions the agency recovering $8.1 billion in overpayments, but it costs money to recover overpayments, and “recover” means forcing beneficiaries to pay the money back, with interest. In cases of outright fraud, I don’t have a problem with that. But what about people who are disabled and just worked a few too many hours a week that never got processed properly, or who forgot to report some paychecks, or, let’s face it, maybe never fully understood the whole wage reporting / Trial Work Period / Ticket To Work apparatus and made some easily overlooked but highly costly mistakes?

That’s why simplifying the whole thing appeals to me, along with online reporting of earnings or some kind of automatic tracking that works in concert with the IRS, which gets regular wage reports already. These can sound kind of Big Brother, but I would much rather focus on improving real-time accuracy all around than go for more punitive measures that will satisfy Rand Paul and Orrin Hatch’s craving for pounds of flesh, but perhaps do little to make the system better.

And then there is the sad example of the United Kingdom, which has been putting its disabled people through the ringer for two or three years now, to try and squeeze out the “scroungers” that Daily Mail and Telegraph readers are certain plague their system.

We will need to beware of being co-opted, and of legitimizing really bogus ideas about disability, but who better than disabled people themselves to offer constructive criticism and ideas to make Social Security’s disability programs more efficient and effective?

As is so often the case, the key here is "Nothing About Us Without Us." Usually that's quoted in situations where disabled people are omitted or kept out of important discussions and decisions. In this case, it's probably up to us to join in. Failure to do so may be just as harmful as if we were being kept out.

----------

[Facebook] [Twitter] [Podcast]

Should We Help "Reform" Social Security Disability?

Rand Paul: Advocates for the Disabled Should Help Brainstorm Ways to Cut Social Security Spending ... Kinder, gentler, cheaper (maybe).

David Weigel, Bloomberg Politics - May 12, 2015

I don’t for a minute believe Sen. Rand Paul really wants to reform Social Security Disability in any way a disabled person would like. He’s been trafficking for the last few months in the worst kind of divisive rhetoric about people who are and aren’t “truly disabled”, and philosophically, I suspect he just doesn’t think government should be giving disabled people money at all.

Eschaton’s take on this is pretty straightforward, and I pretty much agree with him.

That said, I also agree in a very narrow and limited way with Sen. Paul when he says that any reforms to Disability should happen with input from disability advocates. I don’t know if he’s aware of the phrase, “Nothing about us without us,” but that’s one way of looking at what he’s saying here.

In fact, it seems to me this is one of the big reasons why disability program reforms in the UK went sour. The major reason of course is that it was motivated most strongly by the Tory government’s drive to cut spending, and also by a strong dose of the same kind of ableism Sen. Paul has been peddling, (see “truly disabled” above). But I suspect it was even worse because there was little or no input from the UK disability community about what changes they would actually like to see in their disability support programs.

The thing is, we have ideas, and no, they don’t consist only of “more money please." We may not be as concerned with saving money and obsessed with catching cheaters as conservatives seem to be, but we do have ideas about how Social Security Disability can help foster greater independence and financial self-sufficiency. If anyone is really, truly concerned about bending the curve on Social Security Disability costs, they might try being patient about it, limiting their expectations, draining the venom out of the conversation, and asking disabled people what would work best to help us become more independent.

As it happens, there is going to be a Twitter Chat on Social Security Reform on June 1 at 1 PM Eastern, using the hashtags #SocialSecurityReform and #CareerACCESS. It is organized by disability advocates, and will probably be a good opportunity to “brainstorm” ideas and see what others are thinking. The National Council on Independent Living Annual Conference will also include a forum on Social Security Reform.

On the other hand there's always a chance, a pretty good one actually, that Sen. Paul and his colleagues just want to beat up on poor people some more, especially the ones they don’t immediately understand, like people with hidden, ambiguous, harder to pigeonhole disabilities.

That doesn’t mean we shouldn’t offer real, good faith ideas when we have them. I think we should, not to make it easier for Rand Paul to bully disabled people, but sometimes good policy cam grow out of dung.

----------

[Facebook] [Twitter] [Podcast]

Poly Sci For Disabled People - Part 3: Government and Bureaucracy

This is the third in a series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 3: Government and Bureaucracy

- Because so many of our support services come directly or indirectly from government, we tend to blame “government” in the broadest sense when things aren’t going well, or when we feel humiliated by the systems that are supposed to support us. Some of the most anti-government people I have met are people with disabilities who rely on government for their everyday well-being.

- When bureaucracy becomes frustrating, we may look towards more private solutions … such as private schools, charities, and religious organizations. These all have a role to play, and can help keep larger, more established programs, including government agencies, on their toes.

- These different directions also coincide with some of the major mainstream political parties and philosophies commonly debated. Conservatives and Republicans tend to distrust government solutions and hold up businesses and private charities as better avenues to meet human needs. Liberals and Democrats tend to view government approaches as more likely to do what needs to be done consistently, and to remain accountable to citizens.

- It is important for disabled people to evaluate the role of the government and private sectors in terms of which is best equipped to meet disability-related needs reliably, consistently, for everyone ... not just here and there or for a lucky few who make the right connections.

- Probably the most common model in the United States is disability services provided directly by local, private not-for-profit organizations, funded and overseen by state or federal programs. It’s a hybrid public / private model with both advantages and disadvantages. One of the disadvantages is that it is easy to become confused about who, exactly, is responsible for good or bad services, and who, exactly, we should be talking to to make changes.

- It is also important to think about the limits of the for-profit business model for providing vital services. Disabled people are equally valuable as human beings and citizens, but our disability-related needs aren’t always … or even often … equally profitable. Someone is always coming up with new ways to make meeting human needs "pay off” in the conventional sense, but it rarely works out as well as planned, and in the end, people on the receiving end tend to be left holding the bag, without backup.

- Another reason disabled people sometimes turn against government programs is that even when they try to do the right things, they tend to do them in top-down, impersonal, ham-fisted ways. Sometimes that’s unavoidable. Closing large institutions and sheltered workshops is going to be traumatic for some disabled people and their families no matter what. However, disability policies do better when they are developed under the guidance and leadership of disabled people.

- “Nothing about us without us,” isn’t just a nice thing for disabled people, it’s essential for making good disability policy and services.

----------

[Facebook] [Twitter] [Podcast]

Poly Sci For Disabled People - Part 2: Rights, Not Privileges

This is the second part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 2: Rights, Not Privileges

- As disabled people, we sometimes get confused about the difference between rights and privileges, between accommodation and favors.

- Because equality for disabled people usually requires being treated differently, you will sometimes hear accessibility, accommodations, and supports described, in a mean way, as “special privileges.” The idea is that things like handicapped parking, workplace accommodations, and financial supports make our lives easier than everyone else’s. 

- You have the right to accessibility and individual accommodations to your disability. These are not privileges you have to earn. They are not favors you have to rely on kind people to do for you. They get you closer to equality, not superiority or higher privilege.

- You earn human kindness and friendships by being a nice person. You may find you can earn an easier life, including some luxuries, by hard work and ingenuity. But you don’t have to earn your continued existence, or equal respect and opportunity.

----------

[Facebook] [Twitter] [Podcast]

Poly Sci For Disabled People - Part 1: Money

This is the first part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 1: Money

- Fighting for money may be our least favorite activity. We would rather be fighting for accessibility, equal opportunity, and respect. Yet, we have to keep doing it. For most of us, money is our most useful adaptive device, and for many of us, it’s very, very hard to get enough of it purely through individual effort.

- “Benefits” and "Entitlements” aren't dirty words. You may be entitled to certain benefits because of your disabilities, and also because you are a citizen. You are not a second-class citizen because you need support from your fellow citizens, even if you need a lot of support.

- There are always better ways to spend money supporting disabled people, but don’t let anyone weigh whether supporting your needs is “worth it” to the taxpayers. For one thing, you are a taxpayer, too, whether or not you have a job.

- Money paid to you in benefits is not “lost” or “wasted” in any sense. It is exactly as valuable as money you earn. It buys things you need, and the people who sell those things to you make profits and feed their families with the money you pay them.

- Even if you don’t have a job now, chances are that you had a job at some point in the past, and may well have a job sometime in the future … maybe a good job, with good wages. If and when you become more financially independent, you will pay in more taxes to support your fellow citizens when they need it.

- You will hear people suggest that there “isn’t enough money” for the things disabled people need to live in health and dignity, to make the most of ourselves. Keep in mind that it is all about priorities. No matter what happens with the economy, programs and people that we really care about most get the funding they need. There is no reason why disabled people shouldn’t as well.

----------

[Facebook] [Twitter] [Podcast]

Poly Sci For Disabled People

Introduction

Last week The Daily Dot posted an article I wrote, A 2016 candidate's guide to the disability vote.

My aim, frankly, was to get a bunch of stuff off my chest about how politicians handle, mishandle, and squander what could be a real and powerful “disability vote.” Next week, starting Monday, I am going to do something similar here on the blog, aimed at disabled voters and prospective voters.

Disabled people in the U.S. constitute a potentially significant bloc of over 18 million votes ... worth real time and effort for politicians to court. And that's not even counting family, friends, and "allies" who aren't disabled, but may think about disability issues when they vote. We can only fulfill the possibility of real, notable power if we think deliberately about how our experiences and needs relate to politics and policy-making. That means knowing something about how politics work, being familiar with political ideologies, and relating them to the disability experience.

Now, I love politics. It's like a hobby for me. So it’s easy for me, even enjoyable, to think and speak and write about these things. However, most people find politics boring at best, at worst vaguely dirty and definitely disappointing. Whatever you feel about politics though, it does affect your everyday life, even if it isn’t always apparent exactly how.

Over the next week, I’m going to explore some ways that political ideas intersect with our lives as people with disabilities. I hope this will help us engage in politics in a meaningful way. More than that, I hope it will help break down some of the barriers and internal discouragements that tend to make us feel weak, powerless, and needy in the face of “big time” issues and politics. The fact is, we are strong even before we band together … at least as strong as any other constituency you can name. Clarifying a few key issues can, I think, make us a little more confident that we have something to say, and a defensible position from which to say it.

These are definitely going to be my personal opinions, but whether you agree with them or not, I think they all raise important questions disabled people need to consider before voting, especially in the run-up to the next U.S. General Election in November, 2016.

----------

[Facebook] [Twitter] [Podcast]

"The Daily Dot" Article

A 2016 candidate's guide to the disability vote

Andrew Pulrang, The Daily Dot - April 21, 2015

----------

[Facebook] [Twitter] [Podcast]

Making Accessible Campaign Propaganda (ahem) Materials

'Candidates should encourage disabled people to vote' Minister says

BBC News - March 26, 2015

I am not aware of anyone in the United States making a high-profile, publicized attempt to produce political campaign materials specifically for voters with intellectual disabilities. It sounds like a worthwhile thing to do, and a pretty interesting task.

For one thing, there are so many types and shades of intellectual disability ... which I believe is what the BBC means when they say, "learning disability".

And how, exactly, does one "translate" a party platform so that intellectually disabled people can understand it? What does "simplifying" mean? Do you take out all the metaphors and colloquial phrases? Do you use shorter words and fewer compound sentences? How does "large print" help an intellectually disabled person with (most likely) normal eyesight?

Or, is it about more than grammar and font size? Are there social studies texbooks designed to teach adults with intellectual disabilities what "liberal", "conservative", and "libertarian" mean? Do you try to alert intellectually disabled voters to opaque, misleading slogans that all sound good, even when they contradict each other?

I would really like to learn more about this.

----------

Facebook

Twitter
Disability.TV Podcast

For Senate

Iraq War Vet, Double Amputee Tammy Duckworth is Running for Senate

Mark Murray and Carrie Dann, NBC News - March 30, 2015

As a Democrat and a disabled person, I am very excited about Rep. Tammy Duckworth running for Senate. I think it’s also interesting that her opponent, Sen. Mark Kirk, is also disabled … recovering from what I recall was a very serious stroke. How will the disability factor play out when both candidates are disabled? Do Duckworth and Kirk have different perspectives on their disabilities? Do they talk about them differently from each other? Or, will their individual approaches to disability just cancel each other out, making disability entirely irrelevant? I look forward to finding out.

I am also thinking that it might be fun to start following all of the major 2016 election campaigns that include candidates with disabilities. I don't tend to think that having more disabled people in Congress or more disabled Governors would necessarily make for better policy, but more of us being in office might have broader, more abstract positive effects on the disabled community.

In any case, following the races might be fun.

----------

Facebook

Twitter
Disability.TV Podcast

The Politics and Policy of Home Care

OHIO GOVERNOR KASICH'S PROPOSAL WOULD INSTITUTIONALIZE PEOPLE WITH DISABILITIES

Jane Hash, The Mobility Resource - February 28, 2015

I’m sure there are all kinds of quasi-budgetary, quasi-reform proposals currently meddling with generally functional home care systems in other states. I’m blogging on what’s happening in Ohio for two reasons.

One, I’ve been reading Tweets about home care in Ohio for months now, maybe a year. Two, this is the first full explanation of the issues I have seen so far. Three, it’s written by Jane Hash, who I met virtually when she discussed American Horror Story: Freak Show with me on my Disability.TV podcast.

It still amazes me that there aren’t more Republican politicians who buy into consumer-directed models of home care. It’s less bureaucratic, it relies on lots of individual responsibility, and, more cynically, consumer direction has an uneasy relationship with unionized nursing. It shouldn’t, but it does.

Of course, the sticking point is that it involves taxpayer money, comparatively large amounts of it, essentially being given, directly or indirectly, to low-income severely disabled people to manage home care for themselves. Personal responsibility may be a cherished value of conservatism, but giving poor people lots of money and services is definitely not.

I am curious about the issue of the alternative program mentioned, which would, apparently, make consumers the “employer of record”. In one sense, this sounds like a reaffirmation of consumer control. On the other hand, it makes it an all-or-nothing proposition … either you take ALL responsibility on yourself, or you give up all of it to a home care agency.

In New York State, where I live, consumer-directed home care typically involves non-profit agencies that act as “fiscal intermediary”. They don’t decide who to hire and fire, and they don’t train the workers. The consumers do that. But the agencies pay the taxes, cut the paychecks, and even provide decent health insurance to the workers, still at a lower cost and slightly better pay to the workers.

All of this aside, it seems like a bad idea to shake things up too often, even if it’s to implement possibly good ideas. Home care is an extremely delicate, intimate thing. If you’re able to find the right workers and create a healthy, functional system for your care, you don’t need loads of bright ideas imposed on you whenever its budget time again.

----------

Facebook

Twitter
Disability.TV Podcast

#SOTU4PWD 2015

Alice Wong of the Disability Visibility Project put up a terrific Storify collection of Tweets from last night’s State Of The Union Address, under the #SOTU4PWD hashtag.

Overall, I was very impressed with the Address. A lot of the policy initiatives President Obama talked about are right up my alley, politically. And truly, many of them would, if enacted, be especially helpful to disabled Americans.

That said, I was surprised that people with disabilities got only a very brief, basically positive, but rather sloppy mention at the end. Look, I’m not suggesting that it’s an insult of some kind that the President didn’t talk about long term care, the disability employment gap, or our apparently never-ending quest for better accessibility. Those of us who are disabled and who were motivated last night to participate in the #SOTU4PWD Twitter hashtag have an understandably skewed perspective on disability issues. Actually, it’s probably the right perspective, but most of our fellow citizens would find more detailed discussion of our issues incomprehensible.

Still, I am surprised that the President didn’t at least mention the ABLE Act, which he signed into law in December. While I have reservations about how the bill turned out in the end, it was a step in the right direction on an issue unique to disabled people, and the bill passed with rare bipartisan support. Since the President chose to make what sounded like a final, kind of wistful pitch for his original idea … more respect and cooperation in American politics … it seems strange that he didn’t cite it as an example.

A few folks on Twitter last night also mentioned how incomplete the President’s mention was at the end … “Americans with mental illness or physical disability,” an odd choice of words that suggests awareness of the need to be inclusive, but insufficient awareness to actually be fully inclusive.

Are we really surprised though? This is exactly the kind of incompleteness that characterizes ableism, especially in liberal, progressive, social justice circles. You have good intent, not enough knowledge, and yet, crucially, not enough motivation to ask anyone how to actually follow through in the right way. As I have said before, I don’t expect people to know this stuff … I just wish they’d take the time to ask.

I think the best thing about the evening was seeing so many disabled Twitterers making smart, pertinent connections to disability issue throughout the speech. This kind of engagement is how we will get to a day in some future January when a President will mention real disability issues, and understand not only how they are important to us, but to the rest of the country, too.

———————

Facebook

Twitter
Disability.TV Podcast