Monthly Reading List

Monthly Reading List

This is my first attempt at a monthly reading list. I plan on making it pretty much the same as the Weekly Reading Lists of the past, only monthly. First, a word about selection criteria ...

The five articles on each list won't be "the best" disability articles I've read, though I'm not likely to post items I think are bad. My selections will be based on a combination of quality, relevance for the month just passed, and content that happens to interest me.

Now, here's the list for June, 2017. All of them are about one topic ... the House and Senate health care bills, especially their implications for disabled people who rely on Medicaid.

Medicaid is My Lifeline
Erin Hawley, Easterseals Blog - June 13, 2017

Erin briefly and efficiently describes in detail how she uses Medicaid-funded home care, and links that to current proposals to cap and cut Medicaid.

Cerebral Palsy Didn’t Stop This College Junior. Obamacare Repeal Might
Jonathan Cohn, Huffington Post - June 17, 2017

This article caught me by surprise. It starts out as a fairly typical story of an inspirational disabled person, almost an inspiration porn story. Then it pivots to show how stories of disability success and virtue also depend on programs like Medicaid that require activism and political support.

Medicaid is a Disability Rights Issue
Erica Mones, Running with Crutches - June 19, 2017

Erica's blog post directly confronts conservative misconceptions about Medicaid ... especially the kinds of casual statements disabled people hear from friends and relatives who should know better, but don't.

Why Disability Rights Activists Stormed Mitch McConnell's Office
s.e. smith, Rolling Stone - June 23, 2017

s.e.'s Rolling Stone article connects all the important dots on this issue ... explaining the widely misunderstood links between disabled people, Medicaid, home care, and the struggle to stay out of institutions.

I'm a Republican and I depend on Medicaid
Jonathan Duvall, Pittsburgh Post-Gazette - June 24, 2017

I'm not going to suggest that the same arguments against Medicaid caps and cuts have more validity coming from a Republican, but they may carry a little more weight for conservatives, and with people who speculate that opposition to these proposals is partisan in some invalidating way. Also, I appreciate Jonathan making the point that far from being a ticket to idleness, Medicaid enables disabled people to work. In fact, it's usually a prerequisite to even attempting to work.

An App For That? Follow-Up

Yellow and white iconic symbol for electronic home automation

A couple of weeks ago, I posted about disability-related apps in the Apple App Store. I noted then, as I have a few other times on this blog, that Apple keeps teasing the idea that there are ways you can control all sorts of household devices with an iPhone app, but that it's strangely hard for consumers to figure out exactly how.

Yesterday, I found an additional resource right there on the Apple website. It's a whole subsection of the iPhone Accessories area, just for Home Automation. A few more puzzle pieces fall into place. There are appliances you can buy that connect with some sort of router-like device, which in turn can be controlled through an iPhone app. It’s easy to imagine how this might be really useful to people with significant physical disabilities.

The problem is that there still aren’t many appliances to choose from, and some of them seem more like novelty items than useful utilities. They’ve got lights, door locks, smoke alarms, and thermostats. That’s pretty good, but what window and door openers? What about setting and adjusting clocks, stoves, and ovens from the iPhone? What about emergency response systems?

And I’m still quite puzzled why Apple and other allied appliance companies don’t mention how their products can enhance disabled peoples’ independence. Are they afraid that will stigmatize the whole line … that people would conclude these are all products just for disabled people? Plus, the whole business still seems way too fragmented and cryptic.

What they should do, (Apple, or any other company in the field), is assemble three or four complete packages of products at different price levels. Offer one low-cost package for small apartments, one medium-priced package for an average family house, and an expensive set for bigger houses and more bells & whistles. Pay one price, and get everything you need to set up a living space controlled from an iPhone app … no guesswork, no hidden purchases, total compatibility.

If buying these devices were that simple, I could easily imagine health insurances, including Medicaid and Medicare, paying for them, especially if doing so would reduce the hours of home care a disabled person needs. $1,000 or so for a package of off-the-shelf environmental controls is cheap compared to an hour or two a day of additional home care, in perpetuity.

So, we seem to be getting somewhere with smartphones and environmental controls, but the whole thing still lacks focus. If you’re reading this and you have experience with environmental controls as adaptive tools for disabled people, tell your story in the comments!

Post Chat: #CripTheVote #DIAchat

#CripTheVote logo with a ballot box with four disability symbols on the front

I just want to leave a brief post to say that this afternoon’s Twitter chat on the Disability Integration Act was fascinating, informative, and emotional. Once again, we got an almost even mix of useful information, new perspectives and ideas, and compelling personal stories … this time all related to disabled peoples’ struggle to get and maintain home care and housing in order to leave an stay out of institutions. It’s hard to imagine a more fundamental issue for people with disabilities.

Disability Integration Act logo

There should be a Storify available shortly, probably posted tomorrow. In the meantime, check out some links about the Disability Integration Act, offered during this afternoon’s #CripTheVote chat:

Long Term Services and Supports (LTSS) Issues for People with Disabilities

The Disability Integration Act (DIA) S.2427

Update: Sunday, May 15, 2015:

Here is the full Storify of yesterday's #CripTheVote Twitter chat on the Disability Integration Act. Thanks again to our guest, Stephanie Woodward of the Center for Disability Rights, and my #CripTheVote partners, Alice Wong (@SFdirewolf) and Gregg Beratan (@g.beratan):

The Politics and Policy of Home Care

The word Advocacy on a page being highlighted by a green highlighter pen
Jane Hash, The Mobility Resource - February 28, 2015

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

One, Ive 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, its 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 arent more Republican politicians who buy into consumer-directed models of home care. Its 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 its to implement possibly good ideas. Home care is an extremely delicate, intimate thing. If youre 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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Long Term Care ≠ Nursing Homes

black and white photo of a pad and pen on top of a computer keyboard
Sarah Kliff, Vox.com - December 14, 2014

Sarah Kliff, who is in my opinion one of the very best journalists on the health care beat, has a very interesting article at Vox.com about how countries pay for “long term care”. Those of us with disabilities and related to disabled people certainly know what a mess it is, but sometimes we don’t know why, and non-disabled people mostly don’t have a clue. Worse, it seems like even the social democracies of the developed world, who usually do human services better, don’t have long term care figured out either.

I hope we get a followup article to this one, because unfortunately, the article equates “long term care” with “nursing homes”. The title says it’s about paying for nursing homes, but the article is about long term care. They aren’t the same thing. Nursing homes is one model of long term care. Others include agency-based and consumer-directed home care, “assisted living”, “retirement communities,” and probably other models, too. It is very dangerous to keep equating the problem of long term care with it’s most outdated, expensive, and, frankly, most hated solution … institutionalization in nursing homes.

In fact, the woman who’s story Kliff cites, a woman with paralysis “from the waist down” is far more likely to need home care than a full-time nursing home. Plenty of people paralyzed “from the neck down” live in their own homes, too, with visiting care and personal assistance. In most cases, this more targeted type of care is at the same time less expensive and less restrictive. The CLASS Act, which Kliff also cites, would have helped with home care as well, and the Community First Choice program is helping in several states as we speak.

Again, this is all stuff that means a whole hell of a lot to people with significant disabilities, and virtually nothing to everyone else … even though it should be common knowledge to everyone. I hope to see more of this kind of work from Vox, and a bit more care in defining the scope of definitions and discussions.

Overtime Pay for Home Care ... What's Your State Doing?

Green highlighter highlighting the word advocacy
A message for readers in the USA ... though others may find it interesting:

Is your state ready to start paying personal care aides overtime, starting January 1? How will your state's home care programs meet the new Federal overtime requirements? Will they fund the higher cost to maintain current hours of service for everyone? Or, will they try to shave and cut hours of care to stay within existing budgets?

Disability advocates tried very hard to get the new Federal overtime regulations for home care workers postponed, so that states could adjust and ensure that services to disabled people aren't disrupted. However, time has run out. Now all states need to look at how they will meet the new requirements while avoiding unintended, but very possible, negative outchomes such as:
  • Reduced hours of services to disabled people, even though their needs haven't changed.
  • Fewer people approved to receive home care.
  • Disabled people forced by reduced care to move back into institutional settings, or delay returning home from them.
  • Fewer hours and fewer overall job opportunities for home care workers.
Let's be clear about this. If states do adjust their budgets to accommodate paying home care workers overtime, without reducing services, that could be a big win for everyone. Disabled people who rely on home care generally support their aides being paid better. What we are worried about are the unintended consequences of adding a higher pay requirement to a program that relatively few people in government fully understand. They mean well, but it seems like they just don't get how the economics of home care, which is paid for mainly by state governments which each decide their own policies and budgets. For the most part, home care recipients have no ability to simply decide to pay their workers higher wages or overtime. It isn't their money. It's mostly the states'. Now, all 50 of them need to pass legislation to meet the requirement without harming disabled people or their home care workers.

That's a tall order, politically, and like it or not, it puts disabled people in the middle, in a situation where doing what many would consider "the right thing" ... paying home care workers overtime as other employees are paid ... isn't really up to them, but where they could easily bear the brunt of the decision either way.

Anyway, if you care about home care and its vital role in supporting independence for people with significant disabilities, find out who's working on this in your state right now and ask what you can do to help.

"Smart Ass Cripple" & "The Mouth"

Recommended Links
Smart Ass Cripple - July 9, 2014

Harriet McBryde Johnson, Mouth Magazine

I hesitate to write about the negative side of disability. People are already predisposed to think that disability is more horrible than it usually is. They don’t need to hear more depressing, horrific stories. However, I think it is important to note that in both of these articles, powerlessness and fear stem as much, if not more, from how people and “systems” deal with disability, than from disability itself.

To get the help they need to live independently and productively, people with significant physical disabilities have to run their lives by committee, and prove their worthiness in ways few non-disabled adults are required to do. And, in moments of crisis and our greatest need, our wishes and knowledge are often overlooked or ignored. One can argue that we wouldn’t be in these positions if not for our disabilities. On the other hand, there is no valid reason why our disabilities should require us to surrender our autonomy or safety. To the extent we do, it is because of how other people, and society at large, choose to deal with disability.

Anyway, these articles moved me in different, though equally powerful ways.

(Thanks to Emily Ladau at Words I Wheel By for recommending the "Mouth" article).

More About Olmstead

Because there's always more to say about Olmstead …

Matt Sedensky, Associated Press / ABC News - June 26, 2014
"Brent Kaderli has a wheelchair-accessible van waiting in the driveway, a hospital bed in a spare bedroom and an electric lift that's left unused. If the 30-year-old quadriplegic had his way, he'd be living here, in his father's house, with help from aides. Instead, he is in an institution, hoping each day for a place that feels more like a home …"
“… Progress has been made in every state to keep more aged and disabled people in their homes and communities, but only half of Medicaid spending goes to such care, with the services routinely denied by a system that favors institutions even though they're typically more expensive to taxpayers.”
This is a very thorough article, making a good case that politics and profit, not health and safety are the main reasons why nursing homes and institutions are still the “default” option for Medicaid long term care.

National Council on Disability - June 22, 2014
"Even as we celebrate the 15th anniversary of the Olmstead decision, NCD recognizes that there is more work to do. As courts continue to apply and interpret what Olmstead means and how best to implement practices and policies that reflect its core principles of self-determination and inclusion, NCD offers the following guidance to facilitate and foster ways that people with disabilities can work, play and contribute to all aspects of American life alongside our non-disabled peers.”
The National Council on Disability highlights how the Olmstead decision is also changing disability policy in employment, and in services to people with developmental disabilities.

The White House - June 20, 2014
"All indications are that we are heading in the right direction. We are working to address many of the most imposing barriers facing those who want to live on their own: finding affordable, accessible housing and improving access to quality support and services tailored to each person’s goals …”
“… Can people eat food they like, when they want to? Choose their roommates? Have guests visit when they want? Come and go from their home as they please?”
The White House shares some individual Olmstead success stories, and focuses on affordable, accessible housing, a key component and often a key barrier to people who want to leave institutions and live in their own homes. The statement also notes recent changes in the definition of integrated, independent living. It has less to do with whether you rent or own, live with others or not, or how much daily help you have … and more to do with whether you in a household, or are a patient, resident, or client.

Olmstead, with Charts!

Information Bulletin #390
Steve Gold - June 20, 2014

This past Sunday was the 15th Anniversary of the U.S. Supreme Court decision in Olmstead vs. LC and EW ... or just Olmstead for short. It is an imperfect analogy, but not too far off to say that Olmstead is to people with disabilities what Brown vs. Board of Education is to racial segregation.

In its Olmstead decision, the Supreme Court applied the Americans with Disabilities Ac, an act of Congress in 1990, in a novel way. It found that "long term care" is a service, like any other, and that state governments that fund long term care must be sure to offer the service in the "most integrated settings", i.e., in peoples' own homes, not just nursing homes and institutions. It also affirmed that a person's choice of where and how to receive long term care services should play a role at least equal to the opinions of doctors and social workers. Finally, the decision ... and the President's Executive Order in 1999 which endorsed strengthened it ... underscored that states and localities might have to change their long term care programs and practices, even to the point of complete overhaul, in order to comply. "The way it's always been done" would no longer be an acceptable limitation, and "We don't offer that kind of service here" could no longer be an excuse.

Let's put it another way. If you, or your disabled child, or your aging parents, need help with everyday self-care every day, or several times a week, and your county or state says the only way they can get that help to leave their home and go into a nursing home, assisted living, group home, or other institutionalized facility ... that is a violation of their civil right to choose getting care in the manner and place they choose. It doesn't say they can't go into the "old folks' home" if they want to, but they can't be forced to just because nobody can or wants to figure out another way for them.

Most people, given the choice, would rather live in their own homes than nursing homes. With this Olmstead concept asserted at the highest level of U.S. law, the expectation was that more people would get care in their own homes and fewer in institutions.

A good way to measure how Olmstead has changed long term care for disabled people is to look at how Medicaid spending on long term care overall is divided among institutional care and community care ... between "facilities" with numbers of "beds", and care provided to people in their own homes and apartments. Steve Gold, one of the foremost advocates and policy analysts on long term care, recently published national and state-by-state data on community vs. institutional Medicaid spending, comparing 2000 with the latest complete data for 2012. Here, in chart form, is some of what he found:

Nationally

2000 Medicaid Average Spending on Long Term Care, United States, 81.3% Institutions, 18.7% Community - 2012 Medicaid Average Spending on Long Term Care, United States, 61.2% Institutions, 38.8% Community
We still spend a good deal more than half of Medicaid long term care dollars on institutional care than we do on providing care in peoples’ own homes, but there has been a 20.1% shift towards community-based care. That’s a pretty big shift that almost certainly is the result of policy changes and peoples’ choices, not changes in peoples’ physical needs. In other words, it’s a shift that has occurred because we wanted it to occur, and made it happen.

States

2012 Medicaid Spending on Long Term Care, North Dakota, 86.0% Institutions, 14.0% Community - 2012 Medicaid Spending on Long Term Care, Minnesota, 34.6% Institutions, 65.4% Community
There is a vast difference among the 50 states. It’s interesting to note that the two states at the opposite ends of the spectrum are the neighboring states of North Dakota and Minnesota. North Dakota is still much more invested in institutional care, while in Minnesota, institutional care is still substantial, but also a clear second to community services, a still a rarity when in most states, institutional care still outweighs community services. Finally, it’s encouraging to see that while some states have made only modest changes, and others have a long way to go, every state has improved it’s balance in favor of community care.

Again, these different numbers can’t be driven by differences in need … disabled and elderly people most likely have the same kinds of needs and preferences in both states. Such a huge difference in spending must be due to different policies, and policies can be changed.

What it means for people is that more of the people who need long term care … children, young disabled adults, and people with disabilities from age … now are able to get it in their own homes, and fewer wind up in nursing homes or other institutions against their wishes. That is progress, and it’s far more dramatic than any chart can fully demonstrate.

Victory In New York State!

Advocacy topic icon
Common sense won over the New York State Nurses Association!

Jon Campbell, Politics On The Hudson - March 26, 2014

“ADAPT has raised important and valid concerns about access to care and the ability of all New Yorkers to live independently in their own homes, and we feel that our proposal fully addresses these concerns,” the union wrote in a statement before the end of the sit-in."

"Darling said the group will now return its focus to the state Assembly in an attempt to get them to back the change before the state budget is passed. Cuomo and state lawmakers face a Monday deadline to pass a spending plan for the 2014-15 fiscal year, which begins the next day.”

Tweets:

ADAPTerBruce: Nurses association supports nurse delegation! ADAPT heads to the NYS Assembly!  @NationalADAPT

NationalADAPT: VICTORY: we who believe in FREEDOM will not rest till we have a CHOICE; COMMUNITY CHOICE! #FreeOurPeople

Now for the New York State Assembly ...