Giving Tuesday

Today is Giving Tuesday, which I guess is a special day meant to follow the commercialism of Black Friday, Small Business Saturday, and Cyber Monday, by encouraging people to give to charities. It reminded me of a post I wrote in May, about how to choose a disability-related charity:

Choosing A Disability Charity

Disability Thinking - May 13, 2015

I tried in that post to be fairly neutral on what kind of disability work is most valuable, and instead focused on effectiveness and simply being aware of what kind of disability-related goals you want to support. In other words, I didn’t really make any value judgments. Today I’m going to go ahead and talk about what kinds of disability work I value, and why.

There are four main kinds of non-profit disability work I will list them in order of my personal preference.

Advocacy and Policy

- Helping disabled individuals fight discrimination, improve physical accessibility, and navigate bureaucratic barriers.

- Shaping all kinds of policies, regulations, and laws in ways that expand opportunities and make life better for disabled people.

Advocacy and Policy are my top priorities. I believe that most of the problems disabled people face are systemic rather than personal, and that making better policies and practices regarding disabled people does the most long-term good for the most people. It also happens to fit my personality, which is unsentimental and analytical, so I just "like" advocacy and policy wonkery more!

Services and Support

- Helping disabled people solve everyday problems directly and indirectly related to their disabilities.

- Providing disabled people with the financial support, technology, and direct personal assistance to achieve and maintain their independence.

Services and support address individual needs, especially when they are tailored to each person's situation and directed as much as possible by the person using the service. I feel it is important to support these services because individuals should not have to wait for that perfect accessible world in order to enjoy independence and fulfillment. I'm not into fancy, elaborate programs, and I'm dead set against segregated, sheltered ones. But certain basic services, like income support and home care, are massively valuable.

Awareness

- Informing people about disability issues and the experience of living with disabilities.

- Increasing social acceptance and reducing prejudice against disabled people.

Although social acceptance is important, and being treated cruelly because of your disability is terrible, I am skeptical about the effectiveness of most kinds of "disability awareness" campaigns. For one thing, I'm never quite sure what, exactly, people mean by "awareness." Disability awareness campaigns also tend to be rather simplistic, setting too low a bar for what it expects from people.

Medical Research

- Learning more about specific medical conditions that produce disabilities.

- Developing therapies and cures that might lessen or cure disabilities.

I value all kinds of scientific research, and in some cases, better therapies and treatments can improve disabled peoples' everyday lives. Too often, though, the search for a "cure" seems like a boondoggle. The rhetoric for these campaigns is often so negative about disability itself that they actually make it harder for us to achieve social acceptance. Basic research should be funded objectively, not based on who has the saddest stories, the cutest poster child, or the slickest marketing team.

I'll add one more recommendation, which was also in my May blog post ...

There are few more important principles of the disability community than: “Nothing about us without us.” Whenever possible, support disability organizations led by disabled people, with disabled on their boards, and disabled people in upper management and on service-providing staff. If nothing else, you should seriously question the commitment and relevance of a disability organization that resists or downplays inclusion of disabled people in leadership roles.

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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.

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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.

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On Social Security Reform

Yesterday afternoon I participated in a Twitter Chat on “Social Security Reform," hosted by Career ACCESS, an initiative to boost employment of young people with disabilities.

The Twitter Chat was mostly about gathering ideas about what the problems are how to fix them. Here is a Storify, created by Career ACCESS, with a sample of what the participants said:

This is a great start. It got me thinking about the different reasons people want to reform Social Security. We are not all on the same page on this. I have noticed that depending on point of view, calls for Social Security Disability and / or SSI reform usually have one or more of the following goals:

Ensure greater financial security for disabled people

We can pretty much assume that most disabled people want this, along with anyone else who actually cares about Social Security’s core mission. It is also an interesting opening for testing some of the new thinking about ideas like Guaranteed Income and the effectiveness of alleviating poverty by simply “giving poor people money,” instead of always trying to craft newer, more elaborate social programs.

Make it easier and more beneficial for disabled people to work and pursue careers

Disabled people want this, too. But so do a lot of social workers and others who believe strongly in the moral, spiritual benefits of work, apart from the financial security that comes from a secure, well-paying job. This point of view has the potential to get a little problematic, because it sometimes leads to some shaming of disabled people who aren't working. However, it is also where liberals and conservatives in disability policy find the most common ground.

Reduce overall Social Security Disability spending

It’s far from clear that Social Security Disability is too expensive or running out of money. The most we can say is that disability benefits are, at times, more costly than some people, maybe most people, think they should be. But who's to say what is the “right” amount to spend? Maybe we're not spending enough. That said, if reforms that accomplish the first two priorities also happen to “bend the cost curve," even a little, that would be a good thing for everyone.

Crack down on fraud

Evidence … as opposed to resentful perception … suggests that there is actually not much fraud at all in Social Security programs. Still, a simpler system, with fewer obscure rules, programs, and eligibility criteria might actually save money and reduce the opportunity for actual, bona fide fraud. Not to mention errors, which may be as much of a problem as fraud.

Confine disability benefits to people who are *really* disabled

This what you hear from people who divide recipients into two categories. There are deserving disabled people, and then there are lazy people and scammers, along with with people who have these weird conditions nobody heard of until a few years ago. They are convinced that common sense is all you need to tell who IS and ISN’T really disabled. Some people really believe this. For others, the argument may be a more socially acceptable substitute for what they really think, which is that the whole program is creeping socialism and should be abolished.

I hope Career ACCESS does more of these Twitter Chats. If they do, I hope more people will participate. We need as many disabled people as possible to keep the reform process on the right track.

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See June 6, 2015 Followup

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Choosing A Disability Charity

Choosing where to donate to charity is tough. Here's a simple guide to help

Dylan Matthews, Vox.com - April 10, 2015

I have been meaning to post something about choosing a disability charity or organization for quite awhile. I endorse the advice in the Vox.com article. For those interested in disability matters, I strongly recommend that potential donors and supporters consider the following:

Find out how organizations spend their money, and choose an organization with priorities and interests that match your reasons for giving. Think about what kind of work you want to support. For instance:

- Money, adaptive equipment, and direct services to individual disabled people and their families.

- Programs and facilities that serve groups of disabled people.

- Public education and awareness campaigns aimed at changing attitudes and improving social acceptance of disabled people.

- Organized advocacy for specific changes in laws, regulations, policies and practices that affect disabled people.

Consider giving to an organization concerned with all kinds of disabilities, not just one condition.

Think about whether you prefer to support a locally-foucsed, independent organization, or a more high-profile, recognized organization with a state or national scope.

Seriously consider giving only to organizations with disabled people on staff, in leadership, and on governing boards.

Look very critically at how organizations talk about and portray disabilities. Do they depict disability as a heartbreaking tragedy, a hellish existence, or as something manageable through thoughtful support, social understanding, and good policies? Ask yourself how you would feel about how organizations talk about people like you if you had a disability.

Finally, let me add a couple of thoughts on staff salaries and overhead. Full disclosure ... I speak from my over 20 years of experience working at a disability non-profit organization.

Obviously, you want to watch out for "non-profit" organizations that pay stunningly high salaries to executives, consultants, and even board members. On the other hand, it’s important to keep things in perspective and not relegate all charitable work to second or third-class status in the wider economy. If you care enough about something to want it dealt with effectively, then you should pay enough to attract talented people, and make it possible for them to stick with the organization. That means paying people enough for a decent living for themselves and their families. That goes double for disabled people who work at disability organizations.

In fact, an organizational budget that seems to be heavy on salary and overhead may not necessarily be wasteful. The costs of counseling, education, organizing, and advocacy, are almost entirely in salary and benefits, along with offices, supplies, and perhaps mileage reimbursement, (for home visits), for those staff. If you prefer your money to provide material benefits directly to disabled people, then look for organizations that do more direct services and administer “pass through” funds directly to individuals.

I strongly prefer organizations “by and for” disabled people. I like organizations that do a lot of advocacy, especially fighting for better policies and practices. I split my interest about evenly between responsive, plucky local groups and truly effective and innovative national organizations. These are my personal preferences, but I do recommend them to others as well.

Still, the most important thing is to decide exactly what you want to do in the disability cause. “Giving to the disabled” doesn’t have to be confusing, but it isn’t as simple as stuffing a dollar in a can, either.

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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.

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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.

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Tax Day Tips

Understanding Disability: Tax credits available for those with disabilities

Andy Winnegar, Santa Fe New Mexican - April 5, 2015

It’s a bit late to post about this, since US Tax Returns are due at midnight tonight. However, there’s always next year. I get the feeling that some of these tax provisions for disabled people, and especially the ones that help businesses improve accessibility, are underused.

The biggest factors with my taxes are my copious out-of-pocket medical expenses, which are directly related to my disabilities, and the Earned Income Tax Credit. Your mileage will vary, of course.

I recommend checking out both of these IRS forms, one shorter and more simple, the other more detailed.

IRS Pub. 3966: Living and Working with Disabilities

IRS Pub. 907: Tax Highlights for Persons with Disabilities

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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.

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Wanted: Finance Guru For The Disabled

This blogger retired at 30, and he wants to show you how you can do it too

Danielle Kurtzleben, Vox.com - February 25, 2015

(Note: This article isn’t about making money as a blogger, it’s about a more general strategy for handling money, saving, and investing).

I am tempted to say that personal finance advice like this is irrelevant to most disabled people, especially those of us who are unemployed, underemployed, and rely on benefits for a significant portion of our incomes. Still, a lot of what the man says about frugality is applicable to us, maybe even more than to higher income folks.

Are there any good, level-headed personal finance gurus out there who have done the research to figure out ways to do more than survive financially, for disabled people with low incomes, benefits rules to follow, unreliable capacity to ramp up work as needed, and fixed disability-related expenses? Are there any geniuses out there who have solved the puzzle of how to get ahead when you are disabled?

Without digging too deeply, it seems to me the biggest barrier we face is the disincentive to invest and build wealth. I think a lot of us could do so modestly, slowly, partially by cutting back on comfort products like this guy suggests, if it wasn’t counterproductive to invest at all. The ABLE Act is the best attempt so far to remove that particular glass ceiling, but a lot of people won’t be able to use it because of the age when their disabilities set in. And in any case, it’s more of a workaround, not a direct change in benefit programs’ asset limits.

Surely there must be someone out there who could come up with a better system for handling money than most of us use. This guy’s retired. Why doesn’t he take a few months … just out of curiosity … to see what he can adapt for us? Or, maybe the wisdom likes scattered among all of us. Maybe if we share our individual “one weird tricks” we might come up with something.

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Some Thoughts On Employment

nTIDE Jobs Report: New Year Shines Bright for People with Disabilities Finding Employment

Penny Gould, Research On Disability / UNH - February 6, 2015

Comparing the employment data in the infographic above to a similar report from last September, it does look like more disabled people are getting into the job market … some actually getting jobs, others actively and intentionally looking for them. That’s good news.

I guess I’m part of the trend. After a year and a few months without paid work, I got a part-time job tutoring students in writing at a local community college. Right now it’s the perfect job for me, given my health and the state of my disability. You could say I am “under-employed”, but I am participating in the labor market and satisfied with my current situation.

Of course the big picture is that by every measure, employment for disabled people has been extremely very low for decades … probably for as long as anyone has bothered to collect statistics. What could possibly change those numbers dramatically? What could we do to bring “employment” and “labor-market participation” for people with disabilities up to, say, 50% or higher?

I used to think that the gold standard for disability employment was the traditional, 9-5, full-time job, in an office. I thought anything less, or anything less traditional, was a defeat or a cop-out. I still feel that way about sheltered workshops, “enclaves” (where all-disabled work crews go somewhere to do a job, basically in isolation), and businesses set up specifically to employ disabled people. In some cases, it feels like an important principle to stick to. In others, well, maybe it’s just a prejudice for me.

The thing is, I’m starting to think that the key to really moving the needle on employment for disabled people is to be open to a wider variety of work models. Part-time. Flexible schedules. Consulting. Working from home. Freelancing. Jobs crafted to fit a particular person’s abilities and talents. Seasonal employment. These kinds of models, coupled with firmer income support programs to fill in the gaps and self-adjust with the ups and downs of erratic employment, could make a real difference.

Which is not to say that anyone should assume that any of us has to work in some non-traditional setup, just because we have a disability. Plenty of us, maybe most of us, are fully capable of doing traditional full-time jobs The viability of “lesser” options should never be an excuse for relegating any of us to them if we want more. Also, non-traditional models need good policy development and vigilance, to make sure they don’t end up being exploitive.

It’s been a long time since I talked at length with a Vocational Rehabilitation Counselor. I wonder what they are thinking these days?

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ABLE Act Wonkery

Law Creates Special Savings Accounts for Disabled People

Ann Carrns, New York Times - January 30, 2015

This is an unusually complete explanation of the new ABLE Act. Although it is written entirely from a money / personal finance perspective, it’s one of the few articles I have seen that gives anything close to equal weight to the idea of disabled individuals opening and using their own accounts for earnings.

Most stories about the ABLE Act focused almost exclusively on families setting aside money to “take care of” disabled loved ones. That’s certainly one of the intended uses of the law, but its one that assumes a more passive role for the disabled person. In fact, the ABLE Act should be very helpful to disabled people who have the opportunity to work and earn.

Of course, it is worth repeating and lamenting that all of this is only available to people disabled before age 26 … a somewhat last-minute restriction cuts out thousands of disabled people who could have benefitted.

Still, if this thing works out well, it could be expanded down the road.

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Disability Fight: Followup

Rand Paul: Disability Insurance Wasted On People With Anxiety And Back Pain

Igor Bobic, Arthur Delaney, Huffington Post - January 14, 2015

Pretty much like I said …

Sen. Rand Paul couldn’t have laid out a more appealingly wrong case that Social Security Disability is broken:

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting your disability check. Over half of the people on disability are either anxious or their back hurts. Join the club,” he added. “Who doesn’t get up a little anxious for work every day and their back hurts. Everybody over 40 has a little back pain.”

The problem isn’t that he is wrong, that, in fact, many people are severely debilitated by “anxiety”, and that “back pain” can be devastating. The problem is that what he says here is exactly how a lot of otherwise decent people really think about disability, and about Social Security Disability. In fact, there are probably a lot of disabled people who think this way, too.

The other big potential problem is that Rand Paul, specifically, gets way more benefit of more doubt than most Republicans, because he’s a “Libertarian”. He’s a U.S. foreign policy skeptic. He’s a rare, if inconsistent voice agains the National Security State. He’s favorably disposed towards pot legalization and against the War On Drugs. Sen. Paul is an appealing figure to people who crave someone with a “different” approach to the usual issues, but who aren’t that interested in following ideas to their logical policy conclusions.

I don’t know how to combat this kind of rhetoric, but we’d better figure out soon, because I think we’re going to hear a lot more of it in the near future.

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The Coming Debate Over Disability

Social Security disability payments will be cut by a fifth if Congress doesn’t act

Max Ehrenfreund, Washington Post Wonkblog - January 7, 2015

Funding for the Social Security Disability fund may be the next big political issue facing the disabled community. If so, this Wonkblog article is a great place to start, as we prepare to counter a wave of vague but heated fraud accusations, and divide and conquer rhetoric. Those of us with the more on-the-nose, obvious disabilities will be told that we are not the targets, it’s those lazy, cheating slobs with heart conditions (snort), breathing problems (scoff), back pain (guffaw), and anxiety disorders (raspberry) who are gaming the system.

We need to be on guard against these arguments, because they are wrong. And, while some people talking about widespread cheating and abuse of Disability certainly believe it, I’ll go out on a limb and suggest that a significant number of ideologues know it’s largely bullshit.

We will need to remember that there has always been a core minority of people who think that government support benefits like Social Security are bad … not badly managed, not at risk from cheaters, not too expensive … but BAD, even when done properly. They think the government shouldn’t be involved in supporting individuals at all. They think that it’s bad for poor people to be given money for no work. They think it’s bad for the our moral character. They think it leads people to think that society owes them a living. They believe that two or three generations of social welfare programs have resulted in a lazy, weak, entitled citizenry.

It might be an intriguing discussion for cocktail parties, but we are a step closer now to ideas like this being put into policy. Something like this has already been happening for a few years over in the United Kingdom, with pretty ugly results, built largely on anecdotal newspaper reports of a few disability “scroungers”.

We will need to watch out for the next year or two, is all I’m saying.

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ABLE Act Followup: I Guess I'm In ... It's Your Call

I just got an email alert from the Center for Disability Rights, asking people to call their Senators and encourage them to vote “No” on S. 313, which is the Senate version of the ABLE Act. The email provides a good overview of what’s wrong with the ABLE Act at this point:

There are two major problems with this bill:

1. It caps eligibility by age. Only people who have acquired their disability before age 27 would be eligible. There has been no logical explanation for this arbitrary number and the Disability Community does not accept leaving anyone with a disability behind.

2. It includes budget cuts to vital services for people with disabilities. One group of people with disabilities should not have to sacrifice such services in order for another group of people with disabilities to have what they need to survive.  Things that would be cut if this version of the ABLE Act passes include:

Specific oral medication that many dialysis patients with End Stage Renal Disease (ESRD) take would not be covered by Medicaid until 2024.  People will die because of this.

Vacuum Erection Systems (VES) would no longer be covered by Medicare.  This seems trivial, but it is assistive devices such as this that allow some people with disabilities the opportunity to have a family – the same right able-bodied people enjoy.

As I have written about recently, I am upset by the last-minute changes to the bill … both for their practical consequences, and because I think it signals a failure of cross-disability collaboration. That said, I can’t quite bring myself to ask Senators to vote no at this point. If I thought there was a real chance to revisit the changes and fix the bill, I would urge them to vote it down, but especially with two-house Republican majorities on the way I don’t see that happening.

I do hope that Senators who have supported this bill will take a good look at the limitations, and realize that they really are more than just the usual compromise all bills go through before they are passed. The age limitation, especially, fundamentally changes the bill, by cutting out entire portions of the disabled population. I think I would rather have seen the ABLE Act account limits reduced … either to a bit less than $14,000 per year, or to a lower total account limit than $100,000 per person.

So, go ahead and pass the ABLE Act. See how the model works. Make the case for expanding it to the whole disability community. Build on it, or adjust as needed to make it better. But let’s not let Congress and the media celebrate this “rare example of bipartisanship” without acknowledging how it got done. And, next time a bill like this comes up, let’s all make it clear that we won’t accept “divide and conquer” anymore, or be talked into throwing disabled people a bit different form us under the bus.

If you want to contact your Senators anyway, click here to get started.

Notes On A Vox Article

How Medicaid forces families like mine to stay poor: “You’ll have to get rid of everything.”

Andrea Louise Campbell, Vox - December 9, 2014

It is important to highlight really informative articles on disability that appear in mainstream publications. The general public knows very little about what life with a disability actually entails. Unfortunately, most stories about disability in newspapers, magazines, and news programs focus on individuals and emotion, at the expense of information on broader policy and how it works … and fails … for disabled people across the board.

This Vox.com article is very informative and as far as I can tell, accurate. More importantly, it provides a very good explanation of the income “trap” that so many disabled people find themselves in, because essential supports are part of income-tested programs for the “poor”.

A few thoughts on the article:

- The article is excerpted from the author’s book. It mentions the Affordable Care Act, which suggests that it is fairly recent.

- I was surprised to see no reference to the ABLE Act, a bill very likely to be passed and signed into law in the next few days that would provide at least a partial way around the asset limits described in the article. Unfortunately, recent amendments to the bill might leave the article’s subject, Marcella, out entirely, if she was over 26 years old at the time of her accident. (The article doesn't mention her age, but suggests she was a young adult). If nothing else, the amendment is a good example of how the “social safety net” grew in such a piecemeal way … with lots of arbitrary limits and loopholes added simply to reduce cost.

- Ms. Campbell takes extra care to explain how income and asset “tests” reward low income rather than high. She implies that most sensible laypersons will find this counter-intuitive and strange. It certainly is maddening, but I don’t see why it’s so surprising. Almost all social assistance in the United States is based on economic need, rather than neutral characteristics like disability alone. It’s the way most American voters think they want it … help for people who need help, not for people who don’t. If you make more money, you need less help. That’s the idea anyway.

- Personally, I would prefer a lot less means-testing, even if that meant relatively well-off disabled people getting help, especially for supports almost nobody can afford, like home care and assistive technology. Barring that, though, I think the system could be made fairer and more humane just by revisiting where all the income and asset limits are set, and comparing them to current cost of living in various regions. We don’t necessarily need to overturn the whole system. Making in more economically functional for individuals and families would go a long way.

The ABLE Act ... Last-Minute Limitations On A Good Idea

House OKs Bill to Widen Federal Help for Disabled

Hope Yen, Associated Press / ABC - December 3, 2014

I was excited about the ABLE Act from the moment I first heard about it, about 3 or 4 years ago. The ABLE Act is intended to address an economic barrier well known in the disability community and virtually unknown outside it. In order to keep Social Security, and often Medicare and / or Medicaid benefits many people with disabilities absolutely need to survive, they can’t accumulate over $2,000 in savings. This means, among other things, that families have a hard time giving extra financial support to members with disabilities, and adults with disabilities risk losing secure benefits whenever wages they earn get “too high”. Essentially, millions of disabled people are punished for working too much or too hard, or for being thrifty, or saving for an important item, like a car or a house.

The ABLE Act has until very recently proposed to raise the savings limit substantially, allowing disabled people and / or family members to put up to $14,000 per year, maximum total $100,000 away in special accounts for specific independence-enhancing purposes, without that money affecting eligibility for benefits, and tax free as well. It sounded too good to be true. While the bill worked it’s way through the process, I tried on several occasions to dig up a flaw or a misunderstood concept. Always, the answers I got were positive.

Yet, I had a nagging feeling there was going to be a “but” in there somewhere. And there is.

At some point fairly recently … I’m not sure when … the bill was amended to create an age limit on eligibility. It will now only apply to people with disabilities that begin before age 26. That means a 27-year-old paralyzed in a car accident would not be able to use the ABLE Act. As it happens, it also means that a lot of people who get MS won't be eligible, I would think, since that condition typically starts when people are in their late 20s and up. Not to mention people who go blind, lose hearing, have traumatic brain injuries, or any of a myriad of serious disabilities that don't always begin in childhood. All potentially deal with the same work disincentives, and all will now be ineligible for the ABLE Act.

I have also read that in order to make the bill “revenue neutral”, some other disability-related programs will be cut, though I haven’t yet seen the details on that. An organization I greatly respect, the Center for Disability Rights, wants the Senate to vote down the bill, or pass a version that doesn’t have an age limit, and doesn’t cut other programs. I am really undecided on whether to fully advocate that at this point. Let's just say I really hope that the Senators take notice of the changes and see that there's more to them than just the typical horse-trading.

In a practical sense, it’s awful to realize that this bill will basically be of no benefit to several whole subsets of the disability community, purely because of an arbitrary age limit, presumably set to limit the bill’s costs. In  a broader sense, too, I think it reflects another unfortunate thing about the ABLE Act’s history.

Fairly early on, the ABLE Act was endorsed by a wide variety of disability organizations … the “usual suspects” of disability activism you might say … but the real impetus for the bill has always seemed come from parents of disabled "children", and from one particular organization, the National Down Syndrome Society. Maybe when push came to shove, the strongest backers of the ABLE Act may not have given much thought to adults with later onset disabilities. They might have been, perhaps naturally, thinking in terms of developmental disabilities and other conditions most often associated with “children”, and not "other" disabilities like spinal cord injuries, traumatic brain injuries, hearing or vision loss, etc. I don't know what happened or who was involved, but I do notice that a tiny minority of disability advocates is even talking about this last-minute change. It looks very much like some sort of agreement was struck and a consensus arrived at that the cuts and age limit were "okay". Maybe they are worth it, but I have a feeling there weren't many people inclined to argue to the contrary.

Don’t get me wrong. I don’t blame advocates for maybe seeing this bill from a particular angle and fighting for it accordingly. What disappoints me more is the relative lack of enthusiasm and urgency the rest of the disability community showed towards the ABLE Act from the start. I just don’t think we had much of a voice at the table, so when the time came to cut deals, a broader constituency wasn’t there to speak up. I'm not saying other disability groups were excluded, just that they were, perhaps, not sufficiently motivated or focused.

I get the feeling that the newly truncated ABLE Act is going to pass, and that few people will notice how it was changed or what those changes say about how disability-related legislation is developed and advocated. The ABLE Act is being compared, mostly by journalists with scant experience covering disability politics, with the Americans with Disabilities Act. One difference with the ADA is that nearly the whole disability community … all ages, all disabilities … made it the top legislative priority, and for the most part prevented any particular disability sub-group group from being carved out. The ADA isn’t equally effective for all disability sub-groups, but the eligibility criteria were specifically crafted to be radically inclusive, (at least for that time), and to make no real distinction between physically, cognitively, sensory, or mentally disabled people, or between the elderly, adult, or children.

The ABLE Act is a step forward, because it sets up a mechanism to deal with a mostly unintended barrier to greater financial security. But it looks now like it will mainly benefit a vaguely defined “type” of disabled person, and their families, (read: parents), rather than the disability community as a whole … a completely unnecessary limitation on a good idea. That’s a shame and we all ought to be more careful next time not to let it happen.