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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Long Term Care ≠ Nursing Homes

The way America pays for nursing homes is a disaster. So how do other countries do it?

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?

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"

A Cripple with a Care Plan

Smart Ass Cripple - July 9, 2014

Not Another Peep Out Of You

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 …

Checkered Progress on Disabled Care Despite Ruling

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.

NCD Statement on the 15th Anniversary of the Olmstead Decision

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.

15 Years After Olmstead – Our Commitment to Community Living

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!

Olmstead 15th Anniversary [Part One] - How Much Progress Has Your State Made?

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

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

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!

Common sense won over the New York State Nurses Association!

Protesters end week-long occupation of NY nurses union office

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 ...

A Ventilator In A Fraternity House

A personal perspective on home care, flexibility, and common sense

"CFC requires states to provide assistance with Activities of Daily Living (ADL's), Instrumental Activities of Daily Living (IADL's) and health related tasks (like medication administration, tube feeding, and vent care) to assure that people have the services and supports they need to live in the community."

"Although New York State has a Nurse Practice Act (NPA) exemption for its consumer-directed program, it needs to amend the NPA to allow attendants under a more traditional agency model to provide assistance with health related tasks with training and supervision from a nurse." -- Community First Choice In New York.

I first experienced the weirdness of this kind of well-meaning but blinkered medical rule when I started using a ventilator at night in the late 1980s, at the same time I started college, exactly the same time.

When I first got my tracheostomy and ventilator in August, 1985, I was in the hospital of course, since trachs require surgery. For as long as I was there, at that hospital, at that time, I had to be in the Intensive Care Unit. Not because I needed that level of care … within days of starting to use the ventilator I was back to almost normal health … but because non-ICU nurses weren’t “qualified” to even touch a ventilator. So, there was the odd spectacle of me attending my first week of college classes by leaving ICU in the morning, going to classes, and coming back to the ICU at night.

That lasted a week, and might have lasted a lot longer, but luckily I was able to move instead into the college infirmary. The college's medical director ran the facility, and had the authority to look at my situations and needs, and agree that I could handle my own ventilator, with help from the infirmary staff, if needed. 

This was still not quite “independent living”, but it was pretty close. I stayed there for a full semester, still going to classes. Actually, it was a great way for me to learn all about the ventilator and tracheostomy care, in a partially medicalized setting where there was competent backup. Mind you, it wasn’t “qualified” like the ICU staff, but they were clever enough to assist me in operating the ventilator, should I occasionally need assistance.

Next semester, I moved into a regular dorm room. There were other students throughout the building, but essentially I was living alone, with my ventilator which I used every night. I didn't have any daily assistance of any kind, nursing or otherwise. I had support of the ventilator company, which made Respiratory Therapist visits every month or so, and supplied me with replacement components, taught me how to clean what needed cleaning, etc. It all worked fine.

In my Sophomore year, I moved into the fraternity house I had joined, and as far as I know, nobody had a coronary or gave a stern lecture about how irregular and unhealthy it all was. This was only a year after the majority of hospital staff had been deemed unqualified to so much as turn the ventilator on. Yet, I lived in that fraternity house until I graduated. Granted, the house had a reputation for being the opposite of the Delta House of “Animal House”, but still. The contradiction was not lost on me.

The key was that I had the physical ability to operate the machine. If I had needed someone else to do so at my direction, I don’t know what would have happened. Given the setting, it would have been an obvious thought to hire a fellow student to help, but would that have been allowed? And if not, why not? If I had the mental ability to take care of my own ventilator, why wouldn’t I have the mental ability direct someone else to do it for me?

As it was, it all might have collapsed anyway if not for key decision-makers being flexible and willing to think "outside the box." Should they have stood fast? Did bending, then changing the rules rob nurses of their proper purview? Did allowing a rank amateur (me) to take care of myself ruin my health? Would I be healthier now if I had a nurse visiting me every day, twice a day, to hand me a breathing tube and push the on button on my ventilator? Such nurses would be paid, of course, but would it be a good use of their time and training?

It took flexibility and a willingness to go with common sense, not the jealous guarding of professional turf or terror of liability, that enabled me to live a fully integrated life ... the kind of life ADAPT is fighting for now.

"We've been dicking around too long!"

Look, I’m not going to reblog every new post about the ADAPT protest in Albany, NY. If you are reading this you can follow events as easily as I can on the Community First Choice In New York blog. But I just had to post this YouTube video of the protesters, who are escalating their occupation of the New York State Nurses Association.

The man who says, “We want them to move the Assembly now. We’ve been dicking around too long!” is Bruce Darling, Executive Director of the Center for Disability Rights in Rochester, and someone I knew when I was an ILC director in New York State. This brings back memories, though none quite like this!

By the way, Bruce was probably speaking off the cuff, but “We’ve been dicking around too long!” could be the new official slogan of the disability rights movement.

Blogging The Protest

Community First Choice In New York

The protest in Albany continues, and now they have a blog, linked above. Given how easy it is to set up a free blog, I’m amazed more protests don’t do this. Twitter seems like the best way to update people as events unfold, but you can’t have detailed policy discussions or manifestos in 160 characters or less. Blog entries can be as long as you want, the print can come from anywhere, and adding photos is dead easy.

This is just really cool.

Albany ADAPT Protest Update

My local Center for Independent Living, the North Country Center for Independence, posted an update on their Facebook page, from the Albany, NY ADAPT action at the New York State Nurses Association I wrote about yesterday. I’ll just quote the whole message sent out from the protest:

"The ADAPT activists who have occupied the offices of the New York State Nurses Association appreciate the outpouring of support from the disability community and others across the nation. It has been over 100 hours since members of NYS ADAPT started the occupation of the NYSNA offices because the union opposes amending the Nurse Practice Act to allow attendants to do health related tasks. Throughout the occupation, we have negotiated with the nurses union in good faith to get their support for nurse delegation so people who need assistance with health-related tasks - including medication administration, ventilator care, assistance with catheters, suppositories and feeding tubes - can get that assistance in the community from attendants."

"By allowing advanced home health aides to do health related tasks, New York State will be able to implement the Community First Choice (CFC) Option. This Medicaid State Plan Option would assure that any individual eligible for institutional placement is able to access services and supports to live in the community. Under CFC, NYS would receive additional federal funding and would significantly expand the services and supports for people with disabilities living independently. Additionally, after expanding the availability of services, it is estimated that CFC at full implementation would generate an extra $340 million a year, every year."

"On Wednesday, when we first arrived at NYSNA, there was significant disagreement about the provision of assistance with health related tasks, and we were concerned that NYSNA’s advocacy was focused on preventing people with disabilities from getting assistance with key health related tasks to live independently. We explained that full implementation of the Community First Choice Option means that no person with a disability should be forced into an institution because they cannot get assistance with health related tasks."

"Through our negotiations, we secured a statement from NYSNA supporting the rights of all New Yorkers to be independent in their own homes, and the rights to any and all care needed to maintain that independence. In that same statement, NYSNA said that “To be clear, NYSNA fully supports the implementation of the Community First Choice program.” NYSNA also proposed alternative legislative language amending NYS education law to allow advanced home health aides to do health related tasks. We are now being told that NYSNA’s language creates a contradiction between education law that would authorize nurse delegation and the Nurse Practice Act in health law that precludes this."

"We are not union lobbyists or lawyers; nor are we governmental officials or legislators. We are people with disabilities who want to secure our civil right to live in freedom in the community. We are also activists, and we will hold the union, legislature and our governmental officials accountable."

"We have fought for 24 years to secure the right to live in the community rather than be forced into institutions. We will not wait any longer, so NYS ADAPT is continuing our occupation of the NYSNA offices."

DEMANDS

"Because of the legal problems that appear to be created by NYSNA's proposed language, NYS ADAPT demands that NYSNA immediately provide a compelling legal analysis demonstrating that their language does not - in fact - create a contradiction between health and education law. If NYSNA is unable to provide such a compelling legal argument, it must agree to address the contradiction by supporting the addition of a “notwithstanding clause” to their language or support an amendment to the Nurse Practice Act."

"NYS ADAPT further demands that the New York State Assembly Democrats ensure the civil rights of people with disabilities by supporting budget language that authorizes advanced home health aides to do health related tasks, and if necessary, amends the Nurse Practice Act in order to fully implement the Community First Choice Option, end the Medicaid institutional bias, and FREE OUR PEOPLE!"

Some of the folks from the North Country Center for Independence are planning to join the protest for awhile tomorrow. I’m hoping they’ll send some photos and Tweets.

A Cold War Heats Up

Disability rights activists' encampment goes on

Jordan Carleo-Evangelist, Albany Times-Union - March 23, 2014

This Times-Union article does a very good job of explaining the fairly technical, obscure, but extremely important reason why 14 disability activists are camped out this weekend at the offices of the New York State Nurses Association:

"The group took over the union's lobby Wednesday to protest NYSNA's opposition to an amendment to the Nurse Practice Act that would allow a new category of workers, advanced home health aides, to perform some jobs currently restricted to nurses.

Expanding responsibility for those jobs — like administering medicine and assisting clients with ventilators — would make it easier for those in need of those services to continue to live in their homes rather than being prematurely forced into skilled nursing facilities, the occupiers argue.”

There’s also this ...

The nurses are protecting their own profession. If less-trained, lower-paid aides start being allowed to do medical-ish tasks, it threatens the job market for nurses. It’s the same with doctors and nurses. Nurses often argue, with good reason, that a lot of things doctors do for a higher price can be done just as well by Nurse Practitioners, for comparatively less. But doctors tend to resist that, in part because they are protecting their own market. Some nurses may actually believe that only they can help disabled people take pills and operate ventilators safely, but I suspect what they really care about is the prospect of a “race to the bottom”, with all kinds of medical institutions relying more on lower-skilled people they can pay lower wages. That is definitely not an irrational concern.

As for disabled people who need daily assistance, it’s not that they hate nurses, or want them to have fewer jobs and lower pay. Most really smart home care users understand that all sorts of home care providers should probably be better paid overall. The problem is that the more of our daily care has to be done by top-level professionals, the less likely we are to get that care in a way that enables us to live freely and independently.

Then there is this.

I use a ventilator at night. No rules or regulations prevent me from living alone and operating the ventilator for myself, even though I’m not a nurse. I’m just me, and years ago a Respiratory Therapist showed me how to run the machine I rent from his company. He visits me once a quarter to make sure everything is working okay, but other than that, I’m on my own.

The key difference is that I am physically able to operate the machine myself. At issue here are people who are just as smart as me, but can not, literally, push the buttons, turn the knobs, and attach and detach the breathing tubes for themselves. Their physical disabilities prevent them from operating the machine themselves. They need someone to be their arms and hands … under their direction. The same goes for medications. I can take my own meds. If I couldn’t physically open the bottles, pour a glass of water, and pop the pills in my mouth, I’d need someone to do these things for me. But, I would be responsible for which pills to take when, not the person fetching my water.

The nurses association is saying that in these cases, the people helping us have to be nurses, who are at the higher end of the training and pay scale, not “lower level” home care aides. Part of the rationale for this, I suspect, is the idea that it takes more than simple, direct instruction to handle a ventilator or administer medications. They would perhaps say that it takes general medical knowledge and professional judgment. Nurses are not just servants, doing our bidding. They are managers, who run our care according to the rules and procedures of their profession, and improvising as needed with their professional level of judgement. That's pretty great if you have the flu or pneumonia, or are recovering from surgery, but for everyday routine personal care, turning a machine on and off, or handing you a pill, a nurse is more than you really need.

That is the real difference between the disabled protesters and the nurse’s association. Disabled people just want help to do things they would be doing for themselves, if not for their impairments. Doctors and nurses are geared to delivering and supervising total care for profoundly sick patients. These two things look the same, and include many of the same tasks, but the relationships are very different.

I hope that this protest ends in success. More than that, I hope everyone involved finds a way to defuse what could amount to a zero-sum Cold War between disabled users of home care, and professional nurses. Both have important interests to guard. It would be nice if they found a way to do it without penalizing or scapegoating each other.

Addendum:

This is a good opportunity, also, to once again praise ADAPT's political skills. This all started earlier in the week with angry Tweets and behind the scenes advocacy with New York State Assemblymember Deborah Glick, a liberal Democrat, who to many peoples' surprise, blocked what looked like easy passage of the Nurse Practices Act changes this is all about. Later in the week, ADAPT pivoted its efforts when, I presume, they found that Glick was doing this to support the NYS Nurses Association. In political terns, it looks like Assemblymember Glick chose a very established, known-quantity liberal constituency ... a nurses union ... over a chronically misunderstood, overlooked, and mishandled component of the progressive coalition ... the disability community. I think ADAPT was right to shift it's focus to the nurses. However, I hope Assemblymember Glick and other progressive lawmakers get the message too, that they have a lot to learn about the disability community, and about the implications of our vital interests.

Addendum #2:

Sponge-bathing in the restroom: Sit-in protest enters fourth day

Steve Flamisch, WNYT News Channel 13 - March 23, 2014

Another good article on the ADAPT protest. The key quote:

“ … the union has no desire to force anyone into a nursing home or other institution.”

That is a pretty standard spokesperson statement. It is also probably true. Yet, it also suggests a very common type of misunderstanding in the realm of disability rights and disability policy. Policies damaging to the the lives of people with disabilities are almost never intentionally harmful. Few except for extreme medical traditionalists actually want more disabled people in nursing homes. The problem is that policies intended to do one good thing  like ensure higher quality care … often end up also knocking over a different set of dominoes entirely … such as making home care impossible to pay for, thereby forcing people into nursing homes. In this case, as in so many others, it takes disabled people themselves to notice the unintended consequences of policies designed by people who, frankly, only have a rudimentary understanding of our lives.

Rule Britannia!

More safeguards needed to ensure rights for disabled, rules supreme court

Owen Bowcott, The Guardian - March 19, 2014

The UK Supreme Court has come out with a powerful decision affirming disabled peoples’ right to "liberty", regardless of their care needs. It is a decision that sounds similar to the United States Supreme Court’s Olmstead decision, but the language here is clearer and more easily understood by the average person, while Olmstead is strong, but constantly needs to be explained.

According to The Guardian, "In a test case on the conditions under which three individuals are living, the supreme court said that their medical conditions did not entitle the state to deny them their human rights."

The Deputy President of the UK Court said:

"If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person."

She added:

"The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.”

Traditionally, care and liberty have been regarded as competing priorities. The more care you need, the less liberty you can expect. The less care you need, the more liberty you have. This UK Supreme Court decision, like Olmstead, appears to break that connection.

The UK court says that instead of competing with the duty of care, ensuring greatest possible liberty is part of the duty of care. A person's need for care neither requires or justifies reduced liberty.

For example:

If you are a quadriplegic and need help with most of your daily routines, things might come to a point where care providers decide that the safest, most efficient way to make sure your needs are met is for you to be in a nursing home. Even if that’s not what you want, there are ways that you can be forced into this “choice”. Your care provider might refuse to provide care in your home, saying they don’t feel you are safe in your own place. Funders might decide that they would rather pay a nursing home fee than for home care visits. And if you have any kind of cognitive impairment, there will certainly be at least some “experts” who will believe that you should be more supervised. In all of these cases, the assumption is that you can either be free, or safe and cared for, never both.

This UK decision poses the radical but common sense notion that having freedom and choice is part of being cared for. Being able to live in your own place if you want iis as important as good nutrition, being able to go to the bathroom, and being free of physical abuse or neglect.

Unlike Olmstead, which didn’t spell out any particular actions to implement the principles it affirmed, this decision will apparently require each individual's care situation to be reviewed annually, specifically to determine whether the disabled person is being ensured an appropriate amount of personal choice and liberty.

I have to admit that I love that the pronouncement was made by the “Baroness Hale of Richmond”. It probably doesn’t impress most British people, but to me it sounds so much cooler and more weighty coming from “Lady Hale”.

Give Us Valets

I'm not feeling too well today, so I'm spending the day with some streaming entertainment from Netflix and Hulu. I am finally watching a fairly famous British TV show from the early '90s, Jeeves and Wooster, starring Hugh Laurie (who later played Dr. House on House), and Stephen Fry. Laurie plays a young, single, upper class flibbertigibbet named Bertie Wooster, and Frye plays his suave, outwardly deferential, but benignly cunning Valet, Jeeves.

I bet there are a lot of disabled people who would give up quite a lot of other supports if they could be replaced by a fully paid, full-time Valet. Or, to be completely proper about it, a Valet for men, and a Lady's Maid for women.

Imagine how much physically disabled people and chronically ill people would be able to accomplish with someone who would not only make us our breakfasts and help us get ready in the morning, but also make our transportation arrangements and either accompany us on our daily travels, or else stay behind, tidy up, and have a cup of tea ready for us when we come home exhausted. It's not just an amusing fantasy. Lots of severely disabled people have personal care aides that do some of these things. But a Valet or Lady's Made is different, and this Jeeves fellow seems like the perfect model. Among other things, he subtly sets his employer right when he's not at his best, (face it, we've all been there), but he never scolds, never lectures. Above all, Jeeves is always on the alert to make his employer's life go more smoothly.

I think that this old-fashioned model of personal service is a better model for most home care situations than, say, nursing. What most of us need every day is facilitation, not treatment. If this is "privilege", I think we disabled people need more of it.

How To Tell If It's An Institution

Some signs that a place might be an institution

Social skills for autonomous people Tumblr blog

The first thing I thought of when I read this post was a speech I heard at an Independent Living Center conference, I don’t know how many years ago. The speaker was talking about how institutional care facilities for the elderly and for people with cognitive impairments were becoming more sophisticated in how they marketed themselves. They had caught on to the fact that people no longer just accept nursing homes and large residential facilities, and are looking for care solutions that feel more “home-like”.

As a result, the lines between true Independent Living and “prettied up" institutional care were being blurred. They still are. And many people with disabilities in need of daily assistance are genuinely confused about what is “independent” and what is “institutional”. The speaker ended her talk with a bullet-point list of questions a person might ask themselves to realize whether or not they are living independently. I don’t remember all or even most of the list, but here are a few I do recall:

"Do you own the utensils you eat with?"
"Do people have to knock and wait for you to answer before coming into your room?"
"Do you have a lock on your residence with a key that you hold and control?"
"Do you choose the people you live with, or whether or not to live with anyone at all?"
"Do you decide what and when to eat?"
"Do you own the sheets and pillows on your bed?"

When I heard these questions, it felt like a bubble popped in my head. All of a sudden I realized that independent living wasn’t about the number of roommates you have, whether you rent or own, or even whether you live on your own or with your parents. It isn’t about doing what you want or some concept of “control”. It’s about ownership, privacy, and personal boundaries. It’s more about “how” and “who" than it is about where. You can't fake these things with extra potted plants or ice cream on Sundays.

If you’ve never even come close to needing extensive daily care, you may not understand how important this is. If you have spent time in an institution, or have come close, I hope this rings true to you.

Nursing Homes vs. Home Care, Explained by ... Al Jazeera?

Young, disabled and stuck in a nursing home for the elderly

Ashley Cleek, Al Jazeera America - October 2, 2013

This is the best, most thorough news story about Medicaid, nursing homes, and home care that I've ever seen. The only real problem with it is that it could lead people to think the problem is unique to Alabama. It's not. Every state has a different ratio of Medicaid spending for nursing homes vs. home care. Some are are better, some are worse. A few states are really ahead of the curve. A few are far behind. But, it's a problem nation-wide.

Activist and disability policy wonk Steve Gold has some comparison data. It's a few years old now, and the presentation isn't very pretty, but it illustrates the point pretty well. If, in fact, nursing home care and home are are such fundamentally different services … are "apples and oranges" … then how do states manage to have such radical different allocation ratios between the two? Peoples' needs aren't that different, and none of these states have massive die-offs of elderly and disabled people. Some states just manage to do as well or better with home-based services, while others are either scared to, or are in the pockets of nursing home companies, or both.

I would also add that it isn't just "young people" who want … who need ... to get out of nursing homes. Almost nobody should be in a nursing home, and 95 year olds can benefit from home care as well as 35 year olds.

As a side note, if this is typical of the quality of journalism Al Jazeera offers on domestic topics, then I really hope they make a go of it here in the US.

Nightmare Scenario

It looks like we have just seen the end of the first round of what may be a long-term struggle between people with disabilities who use home care and the workers who support them and their labor organizations. For people with disabilities who also care about fair pay and respect for low-paid workers, it's a nightmare scenario that's been brewing for a long time.

As I understand it, this is the issue. Home care workers have previously been exempt from some (or all?) minimum wage and overtime rules. On the face of it, that seems unfair, and especially unjust treatment for people who provide such an essential and liberating service. Plus, if we want home care to grow, so more people with disabilities can live independently, outside of institutions and mommy and daddy's homes, then in the long run, better pay ought to make it easier to expand that labor pool, and get better workers into it.

On Tuesday, September 17, 2013, the Obama Administration's Department of Labor announced adoption of new rules that will make minimum wage and overtime laws apply to home care workers. The new rules are set to go into effect January 1, 2015. I'm a progressive, and this seems to me like a very good thing.

There are two problems with this for people with disabilities.

First, all indications are that the knock-on effect of higher pay will be that state governments … which overwhelmingly are the funders of home care … will cope with the increased cost by cutting hours of service, and / or tinkering around with their own rules so that workers simply won't earn overtime, and people with disabilities (and home care agencies) will have to hire more people for limited hours. This, in a marketplace where most agencies and individuals find it extremely hard to hire, train, and retain enough workers to do the job. In theory, and in the long run, perhaps it will all even out, as home care becomes a less strenuous and more fairly paid line of work. But in the meantime, how many people with disabilities are going to wind up back in nursing homes because "oops", they or the agency just can't find enough staff to provide their care?

The other problem is more of a political one. It seems like the Obama DOL went out of its way to avoid dealing meaningfully with the disability community's concerns. They even did the most insulting thing of all … holding a "listening session" timed so that it would be functionally meaningless, just so they could say they consulted us. I know we're not supposed to hold political grudges when the real problem is human suffering, but why did they have to be insulting? I get that there's a possibly insoluble conflict between too goods here, but why not just acknowledge it, tell us we're going to lose this one, and pledge to help make the states whole, so nobody loses their independence? What about paring the DOL announcement with something we've been looking for on the subject of home care, like solidifying and expanding consumer direction models of home care?

I can't help thinking that once again, part of them problem is that home care … especially home care directed by individuals rather than agencies … is still considered a weird anomaly in mainstream politics and policy. Politicians and policymakers are used to refereeing clashes of Titans … like Health Care Unions! vs. Nursing Home Corporations! They probably saw "the other side" in this matter as the bigger home care agencies, not 35 year olds in wheelchairs or grandmas with bad hips or Alzheimers.

Whatever the explanation, I would think that the next steps should be:

1. Document every single case where someone loses meaningful independence due solely to the changes, and lay them on the feet of the Administration, and,

2. Try to come up with a creative way to preserve the best changes for the workers while making up for the increased cost and undoing the administrative disruption as quickly as possible.

We can't just become the Chamber of Commerce and oppose every proposed improvement in the pay and working conditions of home care workers. In the context of modern capitalism, we are natural enemies, but as people actually live their lives, people with disabilities and home care workers are natural friends and allies.

People with disabilities need smart, ethical, contentious people to get us out of bed, dress, and wipe our butts. We want home care workers to be our "Pit Crews", as Smart Ass Cripple calls them ... not our serfs.

But, a little meaningful consultation would have been nice.

A little background:

Minimum Wage and Overtime Pay for Direct Care Workers

U.S. Department of Labor

Cost of caring for elderly, disabled Californians to rise

Chris Megerian, Los Angeles Times - September 17, 2013

ADAPT tells President Obama and Labor Secretary Perez "Stop making decisions about us without us!"

ADAPT, (American Disabled for Attendant Programs Today)

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Addendum:

Here's a good overview of the issue from Disability Scoop. Among other things, it shows that two very strong and reputable disability organizations have different opinions on this.

Best Nursing Homes vs. Home Care Statement Ever

Guest essay: Curtail the use of nursing homes

Chris Hildebrant, Rochester Democrat and Chronicle - September 7, 2013

Chris Hildebrant's essay here is the best explanation of the nursing homes vs. home care issue I've ever seen.

Numerically, this issue probably affects a fairly small number of the total population of "people with disabilities". It really only directly impacts people who can't physically function day to day without help from another person, people who can make great use of in-home personal care, but too often wind up in nursing homes, simply for want of a properly designed and adequately funded alternative. What makes the issue so important is how much stagnation and suffering it causes to put people with disabilities in nursing homes, and how unnecessary and wasteful it is.

This should be a much bigger deal for everyone with a disability, including those of us who aren't (yet) at risk of being placed in a nursing home.

More About Home Care

Rick Perry loves the part of Obamacare Peggy Noonan hates

Ezra Klein, The Washington Post - August 22, 2013

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

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

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

"Wonkblog" Kicks Ass

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

Ezra Klein, The Washington Post - August 20, 2013

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

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

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

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