Category: power and policy

Reflections on Eicha, Tisha B’Av and Jewish Meaning-Making

Last night, I had the privilege of attending a reading of Eicha for the first time in two years. Recited each year on Tisha B’Av, the annual fast day in memory of the destruction of the Temple and the beginning of the Jewish people’s Exile, Eicha is more popularly known in English-speaking culture as the Book of Lamentations.

COVID had kept me away, and in returning I found myself reading with new eyes. Rediscovering a religious text is supposed to be a profoundly spiritual experience. But my immediate reaction was quite different. Despite my best efforts, I found myself recoiling in disgust. Eicha is a very graphic representation of the aftermath of the destruction of Jerusalem. Listening to it as liturgy is hauntingly beautiful, but the text itself is disturbing, deserving of a trigger warning for painfully detailed description of slaughter, famine, cannibalism, and wanton destruction.

Aside from the violent imagery, Eicha also makes extensive use of the traditional interpretation of the Exile: as divine punishment for failing to abide by G-d’s law. “We have transgressed and rebelled, and you have not forgiven.”

This is a common theme in Jewish liturgy: “because of our sins we have been exiled from our land and sent far from our soil”. It represented the dominant interpretation of the Exile for most of Diaspora Jewish history. In some ultra-Orthodox sects, the Holocaust itself is blamed on the Jewish people prematurely seeking to return to the Land of Israel prior to the messianic age, a horrific divine punishment for failing to maintain obedience to this holy decree.

Of course, to any modern eye, this explanation stinks! The destruction of the Temple and subsequent Exile was the result of larger geopolitical circumstances, including the overwhelming power of the Roman Empire and the particularly ill-timed Judean revolt led by Simeon ben Kosevah (messianically dubbed by his supporters as “bar Kochba”, or son of the star). It had nothing to do with acts of sin – only hard realities of poor politics and superior military force. This is precisely the sort of victim-blaming that modern discourse winces at.

Nonetheless, the narrative makes a great deal of sense in the context of rabbinic Judaism’s status as a diasporic religion. Faced with little secular authority and the need to encourage religious observance on the part of a scattered people, the destruction of the Temple was framed as a moral failure. This was practically useful and psychologically necessary. Having experienced a cataclysm that could not be fully recovered from, it was necessary to ascribe it meaning to construct a future from the wreckage.

Once we start to think about religious texts in this critical light, it is difficult to stop. The deliberate construction of moral lessons – meaning-making – is one of the most important roles of religion. Consistent with the instrumental purpose of ascribing causes to Exile, different generations of Sages offered wildly different explanations for the destruction of the Temple, likely dependent on the changing lessons they wished people to take from it. Various Sages place blame on sinat chinam (baseless hatred), inadequate religious observance, lack of shame for engaging in sin, failure to pay adequate respect for one’s social superiors and – in one somewhat self-interested explanation – insufficient deference being given to Torah scholars.

My favorite explanation brings us back to politics. For an ancient text of rabbinic law, the Talmud can be surprisingly practical, directing particular ire on those who prioritized religious zealotry over badly needed pragmatism.

When the Romans besieged Jerusalem, the Talmud tells us that the city’s storehouses held supplies to sustain the people for twenty-one years. The rabbinic Sages urged making peace with the Romans, fearing their superior military might. This proposition was refused altogether by the zealots of the city. Filled with the confidence of their righteous cause, they wished to leave the city’s walls to do battle with the superior Roman force.

“You will lose,” warned the Sages, suggesting they wait out the siege at the very least. But confident of divine deliverance, the zealots refused this prudent course of action. To force the people to fight, they burnt the storehouses, destroying the food supply and beginning a devastating famine.

Rabbi Yohanan ben Zakkai, predicting Jerusalem’s fall, sent for the leader of the zealots, Abba Sikkara. He came to him, whereupon Rabbi Yohanan asked, “Until when will you do this and kill all through starvation?”

Abba Sikkara, like many radical leaders aloft on events they no longer fully controlled, sought to absolve himself of all responsibility: “What can I do? If I say something [to my fellow zealots], they will kill me!”

Rabbi Yohanan asked Abba Sikkara to smuggle him out of the city, whose exits were now guarded by zealots committed to prevent any from fleeing to safety. He justified this request on the grounds that “it is possible there will be some small salvation” if he might escape to keep the rabbinic tradition alive. This Abba Sikkara agreed to, and together they hatched an ultimately successful plot to remove Rabbi Yohanan from Jerusalem disguised as a corpse.

This is a remarkable story, made even more so by the fact that the authors of the Talmud identify with Rabbi Yohanan! He is the hero of our story! Not the zealots, committed to bravely fighting for freedom against the Roman Empire’s legions. No, the Talmud bids us to see ourselves in the intellectual, who lets himself be carted out of the city while playing possum. Even by modern standards, Rabbi Yohanan is far from a traditional protagonist.

Continuing in that spirit, at least one Talmudic author defends the later tactical decision of Rabbi Yohanan, offered his choice of gift by the new Roman Emperor Vespasian, to make the relatively modest request that the Romans spare the academy at Yavne, from which the rabbinic tradition of present-day Judaism emerged. Had Rabbi Yohanan instead asked Vespasian to abandon his military campaign against Judea altogether, we are told, such an outlandish request might not have been granted, and the chance for even this small salvation would have been needlessly lost.

An exercise in meaning-making, yes, but these sections of the Talmud also represent a very cogent reflection on the nature of power and strategy in the face of overwhelming, unbeatable odds.

The rabbinic tradition is usually skeptical of conducting oneself with the expectation of direct divine intervention. Having experienced the disastrous failure of the Bar Kochba revolt, the rabbis of the Talmud counseled a very practical approach towards power relationships, free of the suicidal messianism that had led to the Exile. With very few exceptions, Jews are expected to keep both ourselves and our tradition alive, not deliberately seek martyrdom. There is much to learn from here. The grubby practicalities of disappointing but productive compromises are better than romantic failure in pursuit of a perfectly righteous cause.

There is a deep physicality to Tisha B’Av, especially this year. Eicha opens late in the evening. I am seated – very uncomfortably – on the wooden floor of a dark room. I have joined others to read by candlelight about gruesome acts of violence. My back aches, my eyes squint and I must constantly slap my legs to keep from them losing feeling. I am here because it is the first in-person egalitarian Jewish service I know of since the onset of COVID. My own synagogue is not yet doing in-person services, Zoom does nothing for me, and though my relationship to religion is complicated, I am starved for spiritual connection.

Speaking of hunger, the hot and muggy temperature of the room reminds me that I have just begun to abstain from food and drink. As the sweat rolls down my forehead, I start arguing with myself about whether to maintain my fast for the traditional 25 hours or instead resume eating and drinking in the next afternoon, as some do in acknowledgment of 1948’s restoration of Jewish sovereignty. Is it appropriate to place religious significance on a comparably recent political event? Shouldn’t some acknowledgment be made of partial restoration of what was once lost? Religion is supposed to be timeless! But relevant to the present day!

Thinking back fondly to the two slices of pizza I had eaten before sunset, I feel utterly incapable of weighing the matter in a truly impartial fashion. I am already exhausted. And yet, as the recitation begins, there is something stirring in me.

Whether or not one fasts, the physicality of Tisha B’Av is a powerful experience. We render ourselves vulnerable to meaning, making our minds a canvas onto which we paint significance intended to stay with us throughout the year. This observance is best understood as a delivery vehicle, a capsule that can be filled with a different payload in each Jewish community and in each generation. Intensity of experience makes the soul receptive – without any specifics as to what we are receptive to.

There is nothing inherently manipulative about this – or if it is manipulative, it is not necessarily a bad thing that it is so. Observance offers a container for personal growth – how we define that growth depends on what meaning we pour into that container. This is how we decide what kind of Judaism we want to practice. The law is alive, subject to interpretation and, by interpretation, change. In choosing which of many competing Jewish sources, communities and leaders to place our trust in, we select what meaning to expose ourselves to. Some are healthy and some are hateful. It is in choosing which is which that we express our values.

Good meaning-making, like good ritual, serves a purpose. It is a mistake to think that religion holds no practical function. We turn to it not just for spiritual fulfillment, but also in order to frame decisions that have implications for our day to day lives: how we relate to each other, how we relate to the larger world.

In modern day America, religion is often made use of as an offensive weapon, to force the dictates of a single sect onto the rest of us through aggressive policymaking and culture war shaming. The reaction against this tendency has led many of my class and social background to feel understandable discomfort with letting religion play a role in so-called regular life.

Even most Jews, whose religion is particular to our tribe and seeks no observance from the gentile majority, often feel uncomfortable with being too explicit about religious inspiration for day-to-day living. This is thought to belong to the ultra-Orthodox and the Christian Coalition. Religious experience is seen as safe only when cordoned off into its own sphere, severed from the realities of modern life. Only thus can we protect ourselves from the harms of excess zealotry and the rejection of liberal modernity’s many wonderful gifts.

I think this is a mistake. To be clear, I have nothing against the fine and illustrious traditions of Jewish atheism and agnosticism. Indeed, I applaud the spectacular ability of so many of my people to take G-d out of religion without becoming anything the Christian world would understand as secular. To be a Jew is to confound modernity’s categories! But I believe that specifically religious forms of Jewish meaning-making offer something valuable and are perfectly reconcilable with the tolerance and inclusivity we prize in modern liberalism.

In experiencing religion – truly experiencing it, as a force with relevance to our daily existence – we can choose what kinds of meaning we make. The container can be filled with the fiery passion of resistance or with moralistic preaching against personal immorality. It can be used instrumentally, to encourage obedience and promote social cohesion. Or it can be used as an end-unto-itself, in pursuit of that continuity which is its own kind of fulfillment. We can pour into it any set of values we wish – so long as we are prepared to live with the consequences.

We make ourselves receptive – be it for personal growth, communal expression, or self-sacrifice to a larger cause. What we use religion for should be our choice. But we must take seriously the tremendous burden that comes with a tool capable of shaping our inner life and that of others.

Today, for me, Tisha B’av is an opportunity to ponder the merits of pragmatism. It makes me think about my father’s parents, who were born into a country that epitomized the nature of Exile. Romania was the last European country to emancipate its Jewish population, opposing doing so until after World War I. It was only when the Paris Peace Conference required Romania to offer citizenship to its Jewish population as a precondition for receiving new territory that this changed – despite intense Romanian resistance. My grandparents were born just as this reluctant reform came into effect.

What followed was a period of great change for Romanian Jewry. Having received citizenship, Jews started to enter professions that had previously been forbidden to them (backlash ensued). In time, Romanian Jews became involved with politics. Under the Romanian Monarchy, one of my grandmother’s cousins, a sixteen-year-old boy, was executed for his involvement with the Communist Party. Somewhat ironically, when the Communists later came to power, other members of my family were arrested and jailed for Zionist activism.

All the while, Jewish life became more and more untenable, leading to the Second World War, when Romania stood as Nazi Germany’s ally and collaborated enthusiastically in the murder of between 280,000 to 380,000 Jews in territory under Romanian control.

My grandparents lived through this time. They survived the war. Finding the new Communist regime as inhospitable to Jews as many that had come before it, they finally left Romania. After a brief period in Italy, supported in part by the Hebrew Immigrant Aid Society (please donate!), they made their way to the State of Israel and there set about starting anew in their forties.

I think about the ingenuity of that generation, who collected languages and passports in the knowledge that any one of them might save their lives and that of their children – and knew that, in Exile, no single one of them could be counted on to do so. I think about their pragmatism. My grandparents were not zealots. They simply wanted to build a better life for their family. In pursuit of that goal, they started over with nothing in a new country. They rebuilt themselves in middle age, like so many others of their time, because they wanted their children to live with something other than the ever-present fear that defined the Romanian Jewish experience. I admire that.

There is a school of thought, popular in the first half of the twentieth century, that says that my grandparents’ departure was a betrayal. They should have stayed and fought for a better Romania, goes one version of this argument, calling on them to educate the people who persecuted them so that they could all greet each other as comrades. Leaving Romania was a failure of solidarity, so to speak.

Alternatively, it was the view of the Romanian government that emigration constituted desertion of the international Communist project. Having received a publicly funded education in Romania, they were legally obligated to stay and help build the worker’s state. It was for this reason that my grandparents and other Romanian Jews were only permitted to leave after the State of Israel and the international Jewish community purchased their freedom with cash, shipments of heavy equipment and – perversely – pigs and other livestock. This was also the reason my grandparents were required to leave behind almost everything they had when they left the country. To be a Jewish refugee from a Communist country required paying for the privilege.

I don’t think my grandparents owed anything to Romania or Communism or any combination of the above. I have a hard time believing any Jew owes anything to any part of that blood-soaked soil called Europe. But even if I did, I think I would still admire their pragmatism in placing a better life for their children over the propagandistic calls of national and international solidarity. I admire them for this, as I admire the many Jews who came before them, who put survival over the ecstasies of martyrdom in a holy cause. This is the pragmatism of Rabbi Yohanan ben Zakki. The pragmatism of those who reject zealots.

In life, even amidst the security and comfort of modern day America, there are times that call for martyrdom and times that call for pragmatism. It seems to me that religion should be prepared to offer something meaningful to each of these difficult moments. It is a mistake to turn to religion only when we are ready to die for a cause – sometimes, religion can teach us how to live for one – or even how to abandon one not worth fighting for.

Jewish life and Jewish ritual offer Jews a pathway to shaping our own souls – but it is still up to us to choose what kind of Judaism we will select to do so. There are many options. My Judaism tells me that, even in heartbreaking calamity, our responsibility is to chart a path towards a real and living future.

Being a Disability Rights Voter (Why I’m Voting Rushern Baker)

I’m not quite a single issue voter, but when it comes to primaries, I’m pretty close. Needless to say, the main issue that helps me decide which Democrat to vote for is disability rights. I’m not under any illusions – most primary voters aren’t moved by the issues that I am. But that motivates me to let disability issues influence my vote more than ever: after all, if even disability rights advocates don’t vote based on our issues, how can we possibly convince politicians to care about them?

Hillary Clinton’s strong disability policy proposals, for which she consulted with a broad array of disability rights leaders, led me to prefer her over Bernie Sanders. Even though many felt that Sanders was the more progressive candidate, most disability advocates have long experience with the reality that disability rarely makes the list of standard progressive priorities. The surest assurance that a candidate will endorse disability rights friendly policies isn’t their alignment within the Democratic Party’s internal political conflicts: it is the specific promises they make to people with disabilities and our families.

It is with that in mind that I have decided to vote for Rushern Baker over Ben Jealous in this Tuesday’s Maryland Democratic Gubernatorial Primary. I will, of course, vote for Jealous in the general election if he should win the nomination. But after reading each candidates’ health policy proposals, I find myself both concerned with some of Jealous’ positions and cautiously optimistic about Baker’s.

Ben Jealous’ Support for Expanding Nursing Home Funding Could Harm People with Disabilities

The central component of Jealous’ health policy platform is to implement a single-payer health care system in Maryland. Although single payer and “Medicare for All” has become the rallying cry of large parts of the left, those phrases alone provide relatively little information about what a health care system would look like. It is possible for both single- and multi-payer systems to improve or worsen Maryland’s health care relative to the status quo – and anyone who works on health policy is aware that full implementation of single-payer would require significant changes from the existing Medicare program. To his credit, Jealous provides details about his single-payer proposal: MD-Care. This gives us a chance to evaluate them.

First, the good: Jealous likes Maryland’s All-Payer Rate Setting system, which requires hospitals to charge patients the same price regardless of their insurance. This is one of the best aspects of Maryland’s health care system, and Jealous is absolutely right that it makes Maryland a better fit for a single-payer experiment than other states. Jealous also supports expanding the All-Payer model to non-hospital providers (something that could be done with or without single payer). This is a good idea that could seriously improve access to physicians and other non-hospital providers for those on Medicaid. Jealous deserves serious credit for a sophisticated understanding of the unique circumstances of Maryland’s health policy. He provides a detailed analysis of how the state might approach a policy goal that most candidates just toss around as a buzzword.

Unfortunately, that sophisticated analysis is worryingly absent on the single most important issue for people with disabilities: long term services and supports. Jealous’s health policy platform has only one mention of this issue:

“Today’s nursing homes are far different than those of the past. Our unique All-Payer Progression Plan and the ACA are driving rapid changes to our healthcare delivery system. Marylanders from all walks of life rely on these facilities, but Medicare only covers the first 100 days of stay and then other payers, often Medicaid, must pay the bill. MD-Care will look to ensure that vulnerable residents, parents or grandparents, young adults paralyzed from a motorcycle accident, or siblings with a developmental disability, can afford the around-the-clock quality care they deserve. Care delivered by home health aides and assisted living facilities will also be explored.”

As many readers of this blog know, many seniors and people with disabilities depend on Medicaid-funded services to pay for services to help with things like getting dressed and out of bed, assistance in other activities of daily living and more complex support needs, like help finding and keeping a job or navigating life in the community free of danger. Historically, one of the disability rights movement’s most important goals has been moving people and money out of nursing homes and other institutions into community-based supports people can receive in their own homes.

These issues were dramatized last year by ADAPT’s action against Trumpcare’s severe cuts to federal Medicaid funding. While many progressives loudly cheered ADAPT’s activism at the time, most were unaware that the organization has a long history of protesting both parties on this issue. ADAPT and other disability rights activists don’t just stand for protecting Medicaid funding – they also stand for changing how it is spent. Nursing homes and institutions segregate people with disabilities from society, depriving people of autonomy and the kinds of basic choices about when to eat and sleep, who to talk to and how to live life that others take for granted. Throughout the country, disability rights activists have clashed with the nursing home lobby on how to allocate public funding.

Expanding funding for nursing home stays would increase the likelihood that seniors and people with disabilities would face institutionalization. Jealous affords home care services only the most cursory reference and groups them with assisted living facilities – congregate settings that often have more in common with nursing homes than true community-based services. He makes no reference to Maryland’s Community First Choice state option, the state’s community-based attendant care program for people with disabilities, one of only five nationally. While Jealous took the time to put together a detailed vision for the future of Maryland health policy, he largely ignored the issues that people with disabilities care most passionately about. Worse still, his only substantive comment was a full-throated defense of the nursing home industry that has opposed disability rights activists at every turn.

A call to expand nursing home funding is an especially bizarre position to take in a state like Maryland, which is behind on community services for seniors and people with physical disabilities. Maryland spent 56.2% of its Medicaid Long Term Services and Supports (LTSS) expenditures on community-based care in 2016, putting it 18^th in the country – not great, but not awful.

But this broad number hides the significant disparities between populations in how Medicaid allocates LTSS dollars. The State has done a fantastic job at shifting towards community-based care for people with developmental disabilities, spending 97.8% of its funding for this population in the community (placing Maryland 7^th in the nation). This success hides the state’s failure for people with physical disabilities and seniors, who receive only 28.5% of their funding in community-based supports (32^nd in the nation).

This has concrete consequences. According to the Kaiser Family Foundation, as of 2016, 23,000 Maryland seniors were on a waiting list to receive community-based services. This means that 23,000 seniors must either spend their lives in the isolation and loneliness of a nursing home, rely on uncompensated family caregivers, or risk going without support altogether. Contrary to Jealous’ platform, nursing homes remain isolating and overused, unnecessarily segregating tens of thousands of Marylanders from their families and communities.

Maryland’s relatively poor record at supporting seniors and people with physical disabilities in the community makes Jealous’ call for expanding nursing home care and his relatively cursory acknowledgement of community-based options inexcusable. Though it may sound complicated and obscure, this funding is the main source of almost all of the services Marylanders with disabilities rely on. It represents one of the main areas of state policymaking under the Governor’s control, encompassing almost 30% of Maryland’s Medicaid spending and impacting tens of thousands of people across the state in life-changing ways.

Despite a very sophisticated analysis of the state’s medical system, Jealous and his team are either woefully ignorant of disability services or weirdly passionate about nursing homes at the expense of in-home support. Either way, I can’t justify voting for him in the primary.

Rushern Baker’s Health Policy Platform Emphasizes Home and Community Based Services

Baker’s approach to health policy is considerably less ambitious than Jealous. Rather than propose a single-payer plan, he talks about building on the Affordable Care Act with incremental measures, like allowing Marylanders without insurance to count their penalty payments towards next year’s insurance premiums. Interestingly, Baker saves his most detailed proposals for disability and aging services:

“Improve Support For Long-term Care And Caregivers

Maryland can do better supporting individuals and families who find themselves thrust into the role of caregivers. More and more people find they must manage multiple medications, administer injections, provide wound care, operate highly specialized medical equipment, manage special diets, and constantly paying attention to the psychological well-being of a loved one who is battling a disease, aging, or catastrophic physical disability. Unfortunately, demands from work and life obligations don’t slow down and often pressures increase as finances become strained. Rushern Baker knows the battle as a primary caregiver for his wife Christa who suffers from early-onset dementia. While he’s blessed to have great support systems and coverage, he interacts with and reads emails from many who feel forgotten and need help.

Here’s what he’ll do as Governor:

Maryland can update their Medicaid programs to make sure that home- and community-based services are available, especially training and emotional support for caregivers.

Maryland can “use their licensing and certification authority to marshal a well-trained care delivery workforce” and increase the choices people have in residential settings, especially availability of advanced health monitoring and sanitizing technology as well as qualified visiting aids and nurses.

Maryland can and will evaluate and incentivize the private sector to offer more flexible work arrangements for caregivers especially telecommuting; innovate shift arrangements and use of leave.

Maryland must reevaluate its options to make sure their insurance regulations allow “a range of accessible products” which can make life easier for both patients and caregivers

Maryland can and should support access to 24-hour caregiver support services such as consultations via web video, emotional consultation, and evaluating our lending and residential health care modification standards to assure inspections, cost, and execution put the needs of caregivers and patients first.”

Baker offers a far more detailed proposal on this issue than Jealous does. He seems familiar with the existence of Home and Community-Based Services (HCBS) and describes ways in which he would improve them, whereas Jealous limits himself to a throwaway comment that “home health aides and assisted living facilities will also be explored.” The emphasis he places on community services is a marked contrast to Jealous’ passionate defense of nursing home care.

Baker’s platform here is by no means perfect. He doesn’t commit to ending Maryland’s waiting lists for HCBS and focuses his rhetoric on “caregivers” rather than people with disabilities ourselves. There is definite room for improvement. But one is left with the impression that Baker is invested in improving access to HCBS for people with disabilities and understand why people with disabilities and families want support to stay at home, not nursing homes.

This matters – disability rights activists are very familiar that the general progressive stances of a politician won’t necessarily mean they support our issues. Unfortunately, disability remains left out of much of left politics. To evaluate a candidate’s likely actions on disability, it is important to look at their actual promises and commitments to the disability community, not just their broader ideological stances. Some have taken time to learn about our issues, either out of personal investment or solidarity. Some have not. This should matter to us.

Whoever wins the primary, I hope they will work with state disability rights leaders to craft a more detailed message to the disability community. Both major candidates could stand to improve. Nonetheless, no issue is more important to the disability rights movement than continuing the fight to bring people with disabilities out of nursing homes and into our own homes. On this issue, there is no contrast. Because of that, I look forward to voting for Rushern Baker for the Democratic nomination for Governor of Maryland this Tuesday.

Don’t forget to vote!

Watch the Appointments

Betsy Devos prepares for her Senate Confirmation hearing for the position of Secretary of Education — Betsy Devos prepares for her Senate hearing for the position of Secretary of Education

Today was the first full day of the Trump Administration. I’ve just arrived home from the NYC portion of the Women’s March, and as we all settle in for Day Two of our nation’s first ever post-modern Presidency, a few thoughts come to mind. We each have a moral obligation to oppose Donald Trump’s threat to democracy in the domains we know best, and for me, that’s disability policy.

As I discussed in Vox the day after the election, our goal for the next four years should be to make disability a big part of the progressive pushback against Trump – and in doing so, strengthen the ties between disability advocates and other progressive leaders to make sure we’re ready for what comes next. The Trump Presidency will be a disaster for people with disabilities – but with the right tactics, we may get the silver lining of finally bringing disability into the mainstream of the progressive coalition. So let’s get to work.

With that in mind, it’s worth thinking about how to read the tea leaves on what to expect from the Trump Administration on disability. We already know that Trump intends to block-grant Medicaid, repeal the Affordable Care Act, and utterly decimate the funding base for disability service-provision over the next several years. To a significant degree, that’s not personal – it’s just conservative orthodoxy.

To be clear, these policies represent a horrifying loss of critical consumer protections and hundreds of billions of dollars in funding for disability services. They are the most consequential issues for disability rights advocates – because their passage will put the lives of hundreds of thousands of Americans at risk. Still, most of those promoting ACA repeal or Medicaid block granting are doing so out of the GOP’s usual approach of right wing copy-paste legislating. The impact on people with disabilities is far from their mind or comprehension – and so we have to look elsewhere to discover the Trump Administration’s more considered intentions for disability policy-making.

Personnel is policy

The vast majority of policy-making doesn’t take place in the White House. The federal government is a massive place – over two and a half million people work for the executive branch (not counting military personnel) and any administration must produce countless thousands of pages of policy and regulation in any given year. No President could manage all of this on their own, even with their White House staff. The President must appoint several thousand political appointees to manage agencies outside the White House and implement an agenda on his behalf. Unlike civil servants, who stay regardless of who wins an election, political appointees leave when their President’s term runs out, if not before, and are replaced by the incoming President. These appointees receive some broad supervision from the White House, but are mostly left to their own devices when they don’t need to propose a new regulation or make a budget request.

And so, the first big sign we’ll get about how the Trump Administration intends to approach disability policy-making will come in their appointments to the federal government’s key disability policy positions. The Assistant Secretary of the Department of Education’s Office of Special Education and Rehabilitation Services, the Assistant Secretary of Labor for the Office of Disability Employment Policy and a small collection of about a half dozen other jobs will give us our first real sense of who Donald Trump intends to be on disability issues.

There is a significant possibility that the Trump Administration will appoint people to these positions in the same way that past Republican Administrations have. Typically, the President delegates filling political appointments to an Office of Presidential Personnel, tasked with filling and as-needed refilling the various political appointments that keep the government running. Republican Presidents usually fill disability appointments from the ranks of prior Republican administrations, legislative staff for GOP Members of Congress, state disability policymakers, the occasional conservative think tank figure and other members of the conservative ecosystem with an interest in disability of one type or another. These appointees range from the highly competent, knowledgeable and motivated (there are a few Bush and Reagan administration officials on disability I continue to have immense admiration for and work closely with) to the in-over-their-head hacks who have a personal connection to the President and needed to be stuck somewhere. And everything in between.

As filling appointments go, this would be the best case scenario under the Trump Administration. We’d likely get some disasters muddling their way through, some good people doing the best they can as the White House undercuts them by slashing budgets, and various twists on the same general theme. Disability rights advocates have a lot of experience working with Administrations staffed under these circumstances, and can make lemon from lemonade even with the less competent political appointees. Everyone has a learning curve – you make it work.

However, this is only the best case scenario. To understand the worst case, we need to take a step back and think about Trump’s only real statement on disability issues as a candidate. Politicians take a lot of flak for lying on the campaign trail, and in Trump’s case it is most deserved. But you can still learn a lot by seeing where a candidate’s mind goes instinctively when asked a question – sometimes, it reveals a rare area of genuine conviction.

In eighteen straight months of campaigning, Donald Trump’s only real statement on disability policy was his passionate defense of the discredited hypothesis that autism is caused by vaccinations. On multiple occasions on the campaign trail and during debates, Trump returned to this theme. Before and since the election, his campaign has interacted with prominent anti-vaccine advocates like Andrew Wakefield and Robert Kennedy Jr. As far as disability policy is concerned, autism anti-vaccine myths are the only thing that we know that Donald Trump has strong personal opinions regarding. And so, if Donald Trump decides to take a personal interest in his appointments to disability policy jobs, we know exactly who he’ll be listening to.

In the last several years, the “fringes” of autism advocacy have united together

This is much worse than it seems. One of the most interesting and concerning trends of the last eight years is the growing alliance between the autism anti-vaccine movement and the pro-institution developmental disability lobby. During the years of the Obama Administration, disability rights advocates scored a number of key victories around community inclusion in residential, day and employment services. Federal policy promoted bringing people with disabilities out of institutions and sheltered workshops and into integrated community living and supported employment settings. Needless to say, this sparked something of a backlash.

Throughout the 1980s and 1990s a vocal contingent of parent advocates affiliated with groups like Voice of the Retarded (VOR) and others agitated passionately against the closure of state institutions and the shifting of people with disabilities into the community. Some of these groups received substantial funding from public sector labor unions concerned that their members would lose their jobs if the state shifted residents out of institutions and into the community. However, in most cases, the families involved had excellent intentions yet were deeply misguided about the value of community living.

The research shows an overwhelming degree of support for the value of community living over institutional ones. In most cases, families who are worried or concerned about community living reconsider after their child enters the community and accesses adequate supports. For example, a comprehensive study of parental attitudes and outcomes to community inclusion around the closure of the famous Pennhurst institution in Pennsylvania saw a dramatic shift in parental opinion after their relatives entered the community. From 55% of families strongly opposing community placement prior to their relative leaving the institution, only 4% continued to do so after their relative had entered the community. The same study found that, while only 19% of families surveyed strongly agreed with community placement prior to relocation taking place, a full 66% strongly agreed with it afterwards.

The pro-institution lobby has always had a certain degree of relationship with the autism anti-vaccine movement. For example, a 1993 editorial from Bernie Rimland – founder of the Autism Research Institute and a prominent evangelist for anti-vaccine pseudoscience – warned parents to “Beware the Advo-Zealots” promoting community living for adults with developmental disabilities. But as de-institutionalization has progressed and the autism vaccine causation hypothesis has been conclusively discredited in the eyes of the public, these two “fringe” movements in disability advocacy have begun to come together.

Several years ago, VOR began collaborating closely with Age of Autism and other anti-vaccine groups, accurately recognizing that those who refuse to believe the overwhelming evidence on vaccine are unlikely to believe the equally overwhelming evidence in support of community living. The relationship is close and ongoing, with VOR and other similar parent groups successfully enlisting anti-vaccine parents in efforts to oppose shifts away from sheltered workshops, the expansion of rights for individuals living in group homes and other restrictive service-provision environments and further efforts to shift state and federal funds away from institutional care and towards community supports. As a result, there are rapidly expanding social, professional and financial relationships between anti-vaccine and pro-institution advocates. While anti-vaccine parents continue to hold a variety of views around inclusion in residential, educational, day and employment settings, there is an increasing likelihood that the leaders of the anti-vaccine movement will have considerable sympathy for pro-institution policy-making preferences.

A Trump Administration that believes that vaccines cause autism insults Autistic people and can do tremendous harm to public health. But at the end of the day, defending vaccine policy is not a core interest of disability rights advocates. There are others for that job, and compared to other areas Trump is engaged in, it is not even a top five concern.

But once we take into account the “congealing of the fringe” that’s taken place in autism and developmental disability politics over the last decade, an anti-vaccine President is a much scarier prospect. After all, the people that have Trump’s ear on disability aren’t just anti-vaccine – they also hold views that promise to reverse decades of federal policy promoting inclusion and access to the community for people with disabilities.

If Donald Trump turns to his anti-vaccine friends to fill disability policy positions within his Administration, he will be getting names prepared to reverse the most cherished victories of disability advocates around closing institutions, expanding community services, shifting people out of sheltered workshops into integrated employment and expanding choice and control people with disabilities have over their own lives.

So watch the appointments carefully, and be prepared to respond. For some positions, a Senate confirmation process exists that will afford an opportunity to investigate the views and qualifications of Trump’s nominees. I can speak from personal experience that the anti-vaccine and pro-institution wings of the autism and disability worlds are not reluctant to use this process to advocate against nominees who don’t match their views (as is their right). We would benefit from following their example.

For other positions, no Senate confirmation requirement exists – meaning that disability advocates will need to make their case to the press and the public in order to sound the alarm bells as quickly as possible. Highlighting the ways in which pro-institution political appointees may threaten to reverse hard-won Obama Administration victories on disability rights may help limit the damage – or at least educate progressive advocates from other communities about these issues. That education may matter quite a bit when the next Democratic President gets inaugurated (swiftly, and within our days).

It is my sincere hope that this speculation all proves unnecessary. If we’re fortunate, the first round of Trump disability appointees will show us their personnel policy on disability is similar to Bush and Reagan before him. But if we’re not, it will be more important than ever for the disability rights community to be ready. When it comes to community living, Donald Trump can be as dangerous for people with disabilities as he is for so many other parts of the country.

Labor and Disability Rights: A Chicken and Egg Problem

Last week, the Department of Labor issued a new rule raising the salary threshold below which workers are entitled to overtime pay. This is a pretty big deal – prior to now, only those making below $23,660, about seven percent of the workforce, were eligible for overtime. Thanks to the Department’s new regulation, as of December 1st workers making below $47,476 will now be eligible for time and a half pay when they work more than 40 hours a week.

More prominent commentators have written about the potential impacts of the rule far better than I, but on balance, it seems like a step forward for working Americans, whose wage growth has stagnated for decades. The rule has a particular disability element, however. The Department of Labor coupled the rule with a time-limited non-enforcement policy applying to most residential based providers of Intellectual and Developmental Disability (I/DD) services. Essentially, for the majority of agencies providing services to people with I/DD, the Department of Labor will decline to enforce this new overtime threshold for the next three years.

The non-enforcement policy (which, full disclosure, ASAN joined other groups in advocating for), raises interesting questions. Why are Medicaid-funded employers different from other ones? What rationale justifies different rules applying to them, albeit only temporarily? Others have written on the hypocrisy of progressive organizations seeking to maintain unfair labor practices inconsistent with their stated principles. Is this just another example of a right for me but not for thee?

On balance, I think not. Agencies providing community services to people with disabilities are uniquely situated among employers, in that virtually all of the funding they receive comes from state Medicaid programs. Unlike private business, for whom added labor costs can be covered by reducing profits, or donation-supported non-profits, who can cultivate new donors, most disability service-providers rely exclusively on Medicaid reimbursements set by state government. Where the state chooses to raise rates in line with new labor regulations, this isn’t a problem. Where it does not, however, small and medium sized providers are forced to scale back services to the people they serve in order to stick around.

This isn’t the first time that this issue has come up. In 2011, the Department of Labor proposed a new regulation drastically narrowing an exemption to the Fair Labor Standards Act known as the “Companionship Exemption”, allowing home care workers to be paid without regard to overtime and minimum wage law. Under the new rules, promulgated in final form in 2013 and having recently come into effect in late 2015 after an extended court battle, the Companionship Exemption no longer applied to the vast majority of workers providing services to seniors and people with disabilities in community-based Medicaid programs. For the first time, federal labor law would apply fully to this population.

While the application of minimum wage requirements was not a significant burden (most states already required this in state law), requiring time-and-a-half for overtime was. State Medicaid rates to agencies (and individual budgets for people with disabilities who self-direct their own services) had never taken into account the need for overtime costs. Furthermore, given the low rate of pay most support workers receive and the difficulty in finding a good interpersonal “match” between worker and client, it has long been commonplace for workers to work well in excess of forty hours a week.

Without access to new Medicaid funds, agencies and self-directing people with disabilities would be unable to cover the cost of overtime, raising the potential of cutbacks in worker hours and/or services received. Such cutbacks could lead to people with disabilities forced into nursing homes and institutions as a result. Disability rights advocates (myself included) were justly concerned, and many fought hard against the new rule. Considerable controversy ensued.

In so far as the Companionship Exemption regulation planned for the likely impact on providers supported by state Medicaid programs, it did so in the expectation that it would force a crisis, triggering necessary state reforms. This way of thinking is simple: if provider agencies were forced to pay overtime on hours worked above forty hours a week, they will successfully pressure their legislators to allocate funds to cover their added costs. Under this formula, new labor law and the additional Medicaid funding needed to pay for it are the proverbial “chicken and the egg”. One has to come first – and proponents of the Companionship Exemption rule hoped to force the new funding by requiring that overtime be paid. And in some cases, this is exactly what happened. Unfortunately, not every state responds the same way to a crisis.

Some states have simply declined to allocate new funds to assist agencies to comply with the rule, working under the assumption that agencies will act on their own to prohibit their workers from working above the 40-hour threshold. Many of these states have directly prohibited worker overtime in self-directed programs, where people with disabilities manage workers without an agency. These worker hours caps cause serious problems for people with disabilities. The new caps threaten long standing support relationships and force many – particularly those in rural areas or with specific cultural and linguistic competency needs – to struggle to find new providers (a problem MySupport, a new tech platform some colleagues and I developed, is designed to help solve, I should add). Workers are also worse off, facing a cut-back in hours and a reduction in income as a result.

And because of a long standing labor law doctrine called “joint employment”, which stipulates that entities that play a significant role in designating working conditions or wages may also be considered employers even if they are not the entity signing paychecks, a number of states realized they had to limit the number of hours a worker could work for any Medicaid-funded recipient of services within a self-directed program. Not only could workers not work more than forty hours a week for a single client under these rules – they can’t work more than forty hours a week for any client funded by the Medicaid program, since the state is considered a “joint employer” with the person receiving services. Since collective bargaining agreements and state-designated wage rates can tip the balance into a state becoming a joint employer, this is causing some states to consider rolling back such measures, leaving labor rights worse off in these jurisdictions.

What lesson should we draw from this? Should Medicaid providers be permanently exempt from overtime obligations and other aspects of labor law? No – such a policy would not only be unfair to workers, it would be terrible for people with disabilities. Already, publicly funded community based services struggle to attract an adequate workforce, with sky-high turnover rates and workers living in almost as much poverty as the people they support.

It is no accident that the Department’s non-enforcement policy represents a delay rather than an exemption of the Department’s enforcement of the new overtime rule. The intent behind this measure is to allow state legislatures sufficient time to allocate new funding, allowing the implementation of these labor protections to be put in place in a responsible way, without harming those receiving services.

In fact, one can argue that the Department’s non-enforcement policy really doesn’t go far enough. After all, the Fair Labor Standards Act is not enforced solely through government action. Private citizens can bring lawsuits for unpaid wages any time they want, and the Department’s non-enforcement of the new rules does not change their applicability to I/DD service-providers. And, of course, eventually, the Department will enforce its own rules, and there is no guarantee states will do the right thing and raise rates before then.

Since the fight over the Companionship Exemption rule (and as efforts to raise state and federal minimum wage laws proceed), disability rights advocates have been discussing the need to tie Medicaid rates to new labor laws. Some more progressive states have passed state statutes doing so already. But this is a national problem, and it requires a national solution.

At the federal level, there are a variety of avenues that could accomplish this. The most reliable would be a change in law. Congress certainly has the authority to require states to adjust Medicaid rates in line with minimum wage and other labor law modifications, and perhaps offering an enhanced Medicaid match rate for labor law changes originating at the federal level (like an increase in the national minimum wage). Should such a measure prove politically difficult, it is possible that more limited progress could be secured through administrative action from the Departments of Justice and Health and Human Services.

After the promulgation of the Companionship Exemption rule, DOJ and the Health and Human Services Office of Civil Rights issued a Dear Colleague letter to the field instructing states that they may need to provide for reasonable modifications to caps on worker hours in order to comply with their obligations under the ADA and the Supreme Court’s 1999 Olmstead v. L.C. decision. The letter states that states must provide for, “reasonable modifications to policies capping overtime and travel time for home care workers, including exceptions to these caps when individuals with disabilities otherwise would be placed at serious risk of institutionalization…[but] whether a reasonable modification is needed and what the modification should be depends on the specific factual circumstances.”

A series of enforcement actions to better articulate the parameters under which states must offer an exceptions policy (and the circumstances under which it would be triggered) would go a long way to making this guidance more meaningful to the lives of people with disabilities. Still, exceptions to worker hours caps won’t fix the bulk of the harm caused by the overtime rule. What’s needed are changes to state and federal law to require Medicaid rates to rise automatically when labor law increases provider costs.

Such a policy would address the conflict between labor and disability rights advocates. We should be able to find a way to protect both of our interests. Labor must realize that forcing a crisis in disability support is an irresponsible and dangerous way to secure new funding – and disability advocates should join forces with unions to build a viable political coalition for planned and responsible increases in worker compensation.

Workers providing disability services deserve the full protections of labor law and people with disabilities deserve adequate access to community support from workers they trust. It’s past time that we put in place policies that protect the rights of both workers and people with disabilities.

Donald Trump Wants the Disability Vote – Don’t Give it to Him

Late last night, Senator Ted Cruz ended his campaign for the Presidency. While Cruz himself was by no means suited to be President, his departure from the race makes something that would have been unbelievable a year ago a certainty: Donald J. Trump will become the Republican nominee for President of the United States.

Even the once formidable Republican Establishment is rallying around Trump. Shortly after the results of the Indiana primary were announced, the chair of the Republican National Committee, Reince Priebus, tweeted his support and called for the party to unite behind a man who has built his campaign on the rawest kind of hatred, prejudice and xenophobia. Ari Fleischer, George W. Bush’s Press Secretary, tweeted his support for Trump only two months after condemning his refusal to denounce David Duke and the Klu Klux Klan.

How did we get here? Many are asking that question, and better minds than mine have put forward a wide array of theories. But there’ll be plenty of time later on to try and figure out how a vulgar reality television star who built his candidacy on the most outrageous sort of lies and authoritarianism became a major party nominee for President. Now, our focus must shift to ensuring that he does not win the general election.

Because make no mistake: Trump is dangerous, and while the smart money remains that the Republican party that was foolish enough to select him will lose by historic margins in November, we underestimate him at our peril. He is cunning, shameless and extraordinarily talented at becoming whatever it takes to win. People underestimating Donald Trump is what got him this far. Those of us who see what a disaster Trump would be for the United States of America and the world need to not make that mistake.

At times like this, it’s incumbent upon every reasonable person to do their part. We all have to speak out, to whatever small section of the electorate listens to us, about the danger that Mr. Trump poses to the American republic. Others will speak about how Trump threatens racial and religious minorities, democratic norms, journalistic freedom, basic standards of human rights, long-standing American commitments to our allies abroad and much, much else. As a lifelong disability rights advocate, my role is to speak – solely in the capacity of a concerned citizen – as to how Trump threatens the disability community.

It’s a more important task than many people realize, in part because people with disabilities have not been the main target of Trump’s demagoguery. Despite a reprehensible episode last year where Trump engaged in a cartoonish mockery of a journalist’s physical disability, the bulk of Trump’s attention has not been on the disability community. And this is exactly the danger. To those of us who have been watching closely, there is significant evidence that Trump is likely to make a play for the disability vote before the general election is over.

Already, his campaign has tried to reach out to parents of autistic children who buy into the long discredited myth that autism is caused by vaccinations. As far back as the second Republican primary debate, Trump linked autism to vaccines, going on to spout the long discredited idea that “autism has become an epidemic…Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control.” Never mind the overwhelming scientific consensus against vaccine causation of autism, or the significant evidence that shows that autism has always existed in the general population at comparable rates to the modern day. Never mind the despicable premise that subjecting children to the risk of death from fatal illness is preferable to even a fake risk of having an autistic child. Trump saw an electoral opportunity, and he took it.

With some results, it must be said. Just this past month, Bob Wright, the founder of Autism Speaks, tweeted his enthusiastic support for Trump. Since then, former Autism Speaks executive and failed Republican congressional candidate Elizabeth Emken joined the Trump campaign as a spokesperson, appearing on national television to defend Trump’s comments and claim the vaccine issue was still an open question. Trump has become the enthusiastic candidate of anti-vax parents, receiving endorsement from several blogs associated with the anti-vaccine wing of the autism parent movement.

Trump has also made symbolic gestures towards the veteran community, which includes a significant number of people with disabilities. While these have generally been rejected by the more respectable veterans organizations, he’s doing so because he sees an opportunity and a need. Having nearly won the Republican nomination by showcasing his willingness to trample upon those sectors of society that are weaker than he is, he knows that in order to win a general election he will need a fig leaf. An image as a candidate that stands up for disabled children and wounded warriors is a useful one to project. Every credit he gets in that column will help offset his reputation as a bully displaying his machismo by attacking immigrants, minorities and women. It’s important to deny him that opportunity.

The truth is simple: Donald Trump has an abysmal set of policy positions when it comes to disability. Nowhere is this more clear than in his own campaign website’s policy statement on health care. Here are four areas where even Trump’s meager written statements on policy issues threaten to make things worse for people with disabilities:

Donald Trump will Bring Back Health Insurers Discriminating Against People with Disabilities

“Completely repeal Obamacare. Our elected representatives must eliminate the individual mandate. No person should be required to buy insurance unless he or she wants to.”

When the Americans with Disabilities Act passed in 1990, people with disabilities were protected from most forms of discrimination – with one notable exception: insurance markets. From 1990 to 2014, when the Affordable Care Act came into full implementation, disabled Americans could be denied access to insurance coverage or charged exorbitant rates above the non-disabled population in order to access health insurance. The ACA changed that, banning pre-existing condition discrimination and requiring insurers to serve all who sought their services.

Early in the Republican primary, Trump claimed to want to protect people with pre-existing conditions from continued discrimination. But his health plan includes no such provision to do so – and promises to completely repeal the Affordable Care Act. What’s worse is Trump’s promise to eliminate the ACA’s mandate that individuals buy health insurance. While unpopular, the individual mandate is the only realistic way to make a ban on insurers discriminating against people with disabilities and other pre-existing conditions viable. The House Republican leadership knows this – which is why Speaker of the House Paul Ryan has recently called for bringing back pre-existing condition discrimination in the Republican alternative to the Affordable Care Act.

What the individual mandate – and the use of pre-existing condition discrimination before it – is designed to do is simple: ensure that people don’t wait till they’re already sick to buy insurance. Without it, the health insurance model doesn’t work. Insurance depends on large numbers of healthy, non-disabled people paying premiums against the risk of future illness. By planning to repeal the ACA, Trump shows that he will not keep in place President Obama’s policies protecting people with disabilities from discrimination in the insurance market. By promising to eliminate the individual mandate, Trump proves that he will provide no new such policy himself.

Donald Trump Proposes a Race to the Bottom in Commercial Insurance Benefits

“Modify existing law that inhibits the sale of health insurance across state lines. As long as the plan purchased complies with state requirements, any vendor ought to be able to offer insurance in any state. By allowing full competition in this market, insurance costs will go down and consumer satisfaction will go up.”

Allowing the sale of insurance across state lines is a pleasant-sounding policy idea that’s been rattling around conservative healthcare talking points for years now. It seems superficially positive – after all, increasing competition between insurance providers should serve to reduce prices. Unfortunately, the reality of this proposal would be to set off a race to the bottom for insurers to offer the least comprehensive benefit package possible.

Conservative commentators support the sale of insurance across states lines mainly because it would effectively render impossible meaningful state regulation over insurer benefit packages. State laws requiring insurers to cover particular benefits, like occupational therapy, pregnancy coverage, assistive technology or other health care services or devices would be rendered effectively meaningless by this proposal.

States which maintained these laws would only have their insurance purchased by those who required the benefit – leading to financial insolvency on the part of state health plans. (Once again, the fundamental premise of insurance requires some people to purchase plans that include benefits they don’t yet need and may never need.) Instead, the last plans standing would be those based out of states that allowed for cut-rate, minimal coverage, insufficient to meet the needs of children or adults with disabilities.

Such an approach would force millions of adults with disabilities and families with children with disabilities to limit their work effort in order to qualify for Medicaid or the Children’s Health Insurance Program. Ironically, one of the only things that could prevent such a negative trend is…the Affordable Care Act, which allows the federal government to set basic standards for what insurers must cover that apply nationally.

Donald Trump Promises to Devastate the Medicaid Program which Funds Most Disability Services

“Block-grant Medicaid to the states. Nearly every state already offers benefits beyond what is required in the current Medicaid structure. The state governments know their people best and can manage the administration of Medicaid far better without federal overhead. States will have the incentives to seek out and eliminate fraud, waste and abuse to preserve our precious resources.”

Once again, block-granting Medicaid to the states is a longstanding right-wing policy proposal. Currently, Medicaid works as a partnership between the state and the federal government. For every dollar that a state Medicaid program is willing to commit, the federal government will match it with a dollar of their own (and in most cases much more than a dollar, as the federal match rate is calculated based on the level of poverty within the state – poor states get more federal money). That means that as a state’s commitment increases, so does the federal governments.

This match is critical to ensuring that states are supported to do things like end waiting lists, expand access to critical services to seniors and people with disabilities and continue to maintain support for Medicaid during times of economic downturn. It also means that the federal government can offer incentives for states to change behavior in positive ways – for example, the Money Follows the Person program has helped tens of thousands of people with disabilities escape institutions and nursing homes by offering to pay a 100% match for the cost of their services for their first year in the community.

Unfortunately, Trump’s proposal to block-grant Medicaid would drastically change the nature of the Medicaid program. Instead of states receiving federal funds that match their own commitment, a block grant would lead to states receiving a preset amount of federal funding with no strings attached and no commitment to match additional state investments. This would mean that states would have relatively little incentive to act to cut waiting lists, expand services or maintain their programs when the economy and the state budget was suffering.

According to the Center on Budget and Policy Priorities, the block granting proposals included in the House Republican budget would cut Medicaid funding by $1 trillion over the next ten years. By 2026, funding would be at only two-thirds the level anticipated under existing law. As Medicaid represents the primary funder of aging and disability services in the United States, this is yet another example of the devastating impact Donald Trump’s election would have on disability policy.

Donald Trump Wants to Eliminate Critical Privacy Rights for People with Mental Illness

“Finally, we need to reform our mental health programs and institutions in this country. Families, without the ability to get the information needed to help those who are ailing, are too often not given the tools to help their loved ones. There are promising reforms being developed in Congress that should receive bi-partisan support.”

Over the last few years, as gun violence has become more prominent on the national agenda, many in the Republican party have looked for a scapegoat that can move attention away from gun control measures. They’ve found that in people with mental illness. The “promising reforms being developed in Congress” that Trump is referring to is the Murphy bill, H.R. 2646, the Helping Families in Mental Health Crisis Act.

This legislation would significantly limit the HIPAA privacy rights of people with psychiatric disabilities and would incentivize states to expand forced treatment. The bill also includes provisions that would expand institutionalization of people with psychiatric disabilities and make it harder for the federally-funded Protection and Advocacy rights protection program to provide them with legal representation to secure their civil rights. It’s likely that at some point in the general election, Trump will use this as a talking point to show his “support” for helping people with mental illness. It’s important that we not be tricked when he does.

There’s more to be written about this, to be sure. One can only imagine what the Donald would do to Social Security Disability Insurance or the cavalier attitude with which he would treat the educational rights of children with disabilities. But it’s important to start talking about this now, because the longer the race goes on, the longer Trump and his advisors will try and “evolve” him into a candidate that can win the general election. No doubt promises to be a champion for people with disabilities will play a part in that. When those promises come, be ready and be skeptical. Trump will want to buy the right to trample on the rest of America by offering a mess of pottage for the disability community. If we are so foolish as to accept, he will trample on us too.

Disability Wasn’t Mentioned in the State of the Union. Should We Care?

This past Tuesday, President Obama gave his last State of the Union address. As a policy wonk and a card carrying member of the politics fandom, I enjoyed it tremendously. As a disability rights advocate, I was underwhelmed. Except for a heartfelt section calling for more medical research on curing cancer, the President failed to bring up people with disabilities in his remarks. This is not altogether unusual. While President Obama will have many disability rights achievements as part of his legacy when he leaves office next year, he has rarely acknowledged the disability community in his remarks to the nation.

I have complicated feelings about that. After all, it isn’t as if President Obama has not done a tremendous amount for the disability community. The President’s Affordable Care Act is perhaps the single most important piece of disability rights legislation since the Americans with Disabilities Act (ADA) itself, though most people don’t see it as such. And yet, the benefits of the ACA are designed first and foremost for the general public, and it has been sold in those terms. Very few people think of Obamacare as a gift to the disabled. Perhaps that is as it should be. But the minimal attention paid to the disability community in President Obama’s public addresses does leave one with the impression that the White House does not view disabled Americans as a group worth pandering to.

It is not as if Presidents addressing the disability community in their State of the Union remarks has no precedent in modern political history. George H.W. Bush, who championed and signed the ADA, made reference to the legislation in three of his four State of the Union addresses. Bill Clinton used his 1999 State of the Union to propose a modest long-term care tax credit as well as to call upon Congress to pass legislation making it easier for disabled people to remain in the workforce. In his 2000 address, he followed up to commend Congress for passing that bill into law.

George W. Bush focused on a more specific part of the community, but still emphasized disability services in at least three State of the Unions, twice calling on Congress to re-authorize the Ryan White Act supporting individuals with HIV/AIDS, and held a legitimately impressive record regarding improving treatment for HIV/AIDS internationally. An earlier State of the Union referenced his New Freedom Initiative, a Presidential agenda for expanding disability equality (albeit one with rather limited outcomes).

What’s galling is that President Obama has an extraordinarily strong disability rights record, arguably far more so than that of most or all of his predecessors. The Affordable Care Act’s ban on insurers discriminating against people with pre-existing conditions is a potentially game-changing step for disabled Americans. The Obama Administration’s Justice Department has engaged in unprecedented enforcement of the Supreme Court’s Olmstead v. L.C. decision, a 1999 court ruling requiring states to offer community services to seniors and people with disabilities that sat ignored for most of the Bush Administration. And thanks to an executive order signed by the President in 2010, the federal workforce has reached a record high in employing workers with disabilities.

So does it matter that President Obama doesn’t talk about people with disabilities, if his disability policy record is impressive? I think it does. During my time on the National Council on Disability and in my ongoing work with ASAN, I’ve seen the policy process up close and personal. Many of us in the advocacy community are aware of how many of the Administration’s most important disability policy outcomes came from the personal commitment and expertise of senior appointees. As Assistant Attorney General for Civil Rights, Tom Perez made freeing people with disabilities from institutions and nursing homes a personal cause. Similarly, figures like Sharon Lewis, Sam Bagenstos and Patricia Shiu made aggressive enforcement of disability rights law a priority across every area they had responsibility. Much of the disability policy legacy of the Obama Administration can be attributed to the energy and vision they and others like them brought to their roles.

No doubt the President approved of those initiatives, and he deserves credit for appointing people who sincerely care about the community to important positions. Personnel is policy, after all. But not every political appointee comes with a personal connection to the disability community. Most take their cue from the White House as to which constituencies and projects should be prioritized on an agenda that can not possibly encompass every worthy cause. When people with disabilities are mentioned as a priority in a State of the Union, it lights a fire under every government employee. We need that kind of attention and focus.

Three Articles, Three Kinds of Advocacy

This past month, I published three articles on issues in disability policy. Looking back on them, I’m struck by how (by no particular plan) they reflect a very interesting breakdown of the different kinds of disability rights advocacy.

On December 9th, I wrote a piece for the Los Angeles Daily News on California’s crisis in inadequate funding for developmental disability services:

While the regional center system is admirable, California’s extraordinarily poor funding of it is not. For the last several years, it has become increasingly clear that a crisis exists in California’s developmental disability system, driven by low rates of provider reimbursement combined with a rapidly increasing cost of living. California’s rates are significantly below that of other large and western states, with the disparity between provider reimbursement rates and cost of living particularly drastic in the state’s major urban metropolitan centers. A review conducted by the National Association of State Directors of Developmental Disability Services found that ratios of service coordinators to people served ranked among the worst in the country. Advocates have been calling for additional investment — and now the state has an opportunity to heed their call.

This kind of work – lobbying for increased funding – is at once my favorite and also the most boring type of disability advocacy. Basically, it consists of getting as many people as possible to loudly nudge policymakers at around the same time. To some degree, crafting effective arguments and talking points about why funding increases are important for this particular category at this particular moment matters, but not anywhere near as much as capacity for organized loudness.

On the other hand, this is also the kind of advocacy that is the most unifying. Virtually every kind of disability advocate is welcome, because we all have a shared interest in securing more public funding for our drastically under-funded service system. Even if you believe (as I do), that certain types of services are inappropriate, harmful and should be phased out as soon as possible, the money to be saved from such measures is not sufficient to cover the gap between need and availability in high quality services.

Matt Carey of Left Brain/Right Brain, who shares my distaste for the anti-vaccine contingent in autism politics, expressed frustration that autism organizations who had turned out hundreds of protestors against California’s new school vaccination law were no-shows to the December 10th rally in Sacramento to increase funding for the state’s developmental disability services. I share his frustration. The amazing thing is, we actually mean it.

We would be absolutely thrilled if they did decide to show up in the future. These are groups who spend a good 90% of their energies advocating things that are morally abhorrent to our values – some of which have a habit of attacking my friends and I in very personal ways. But when it comes to fighting for funding for the systems we both depend on, our outlook is “Welcome aboard! The more the merrier!”

And this is as it should be. So long as we can all maintain a commitment to not trying to co-opt these kinds of events (something anti-vaxxers struggle with, to say the least), there is value in having neutral ground where we can all come together to support the public funding that makes arguing about what kinds of services and how they should be delivered possible. This can be somewhat hard to maintain at times: when I spoke at the Sacramento rally, I had to make sure to focus my comments on why the service system needed more money, not focusing on the parts of it, like sheltered workshops and group homes, that on balance could use less.

But if all parties can maintain that mutual respect, we can leverage our political strength far more effectively than otherwise. When we come together to ask the State for more money, I promise not to bash Autism Speaks on the steps of the Capitol building if you promise not to talk about the autism epidemic coming to steal our children in the dead of the night. We may then return to our regularly scheduled trench warfare. This is also as it should be.

II.

After the horrifying shooting in San Bernardino and statements from Speaker Paul Ryan and other Republican politicians that they intended to leverage it to try and pass Rep. Tim Murphy’s atrocious mental health legislation, I wrote a piece for the Guardian opposing the Murphy legislation and highlighting the appalling hypocrisy of politicians who blame mass shootings on people with psychiatric disabilities while cutting the Medicaid funding that supports mental health services:

While Speaker Ryan’s purported concern over the mental health of Americans is touching, it becomes somewhat disingenuous when one takes note of his proposals to drastically slash Medicaid funding – the single largest financing stream for mental health services in the United States. The Senate sponsor of the Murphy legislation, Senator Bill Cassidy, is also on record proposing significant cuts to Medicaid expenditures. Both stances call into question the degree to which improving America’s mental health services infrastructure is truly a priority.

Politicians who propose Medicaid cuts while arguing that the Murphy legislation is the solution to our gun violence problem seem to believe that the problem with mental health in America today is a lack of coercion, not a lack of funding. Their proposed policy recommendations suggest that they believe that we can cut funding and improve services, simply by depriving Americans with psychiatric disabilities of their right to decide how they receive care and who gets to know about it. This is an astonishing assessment; the only benefit of proposing such policies is the ability of politicians to be seen taking action without angering the powerful firearms lobby.

The main point of this article was to push back against the Murphy legislation, which would expand forced treatment while drastically reducing the HIPAA privacy rights of people with psychiatric disabilities and the ability of the Protection and Advocacy rights protection programs to represent them effectively. Since Speaker Ryan had announced his intent to try and move the bill as his main legislative response to the San Bernardino shooting, the political dynamics surrounding it were also very relevant.

This kind of advocacy – about how services and public funding should be structured – is very different from the first kind of advocacy. For one thing, it’s far more contentious. It usually involves pushing for change that threatens the established interests of existing provider agencies or that challenges ingrained assumptions about the capabilities of people with disabilities held by family members and professionals.

It can involve acrimony and anger, with groups and individuals who may stand side by side on funding issues suddenly working at cross-purposes. It drives policymakers absolutely bonkers, since they generally don’t know which disability group they should consider empowered to “speak on behalf of the community”. This kind of advocacy is controversial, confusing and often painful. It is also absolutely vital for the healthy evolution of disability services.

Contrary to those who see the sky falling in every drop of rain, internal political fights over disability policy are not new to the disability community. In the 1970s and ‘80s, for example, groups like TASH and the Arc fought pitched state-by-state battles with VOR and other pro-institutionalization advocates. Our modern system of community services and the growing number of states that have closed all of their large, state-run institutions for people with developmental disabilities is a direct result of that fight. If disability rights advocates were unwilling to court controversy by fighting with other disability groups, there could not be a disability rights movement.

On my last day on the National Council on Disability, I and a few other advocates spent about a half hour talking with Rep. Tim Murphy about his legislation. (Funny story: We ran into him while in a congressional office’s waiting room. Thanks to my prosopagnosia, I only figured out who I was talking to about five minutes after the conversation started. Not my finest moment.)

Leaving that discussion, we were convinced of two things: first, that the Murphy legislation was as ill-advised and pernicious as ever, and second, that Rep. Murphy was sincere in his rhetoric as to why he was introducing it. Like many psychiatrists (his professional background), Murphy actually believes that the problem with the mental health service system in the United States is that patients have too many rights and too much ability to refuse treatment. While he may be taking advantage of the public fear around mass shootings, he is doing so to advance policies he sincerely and honestly believes in.

Recognizing this is important, in my opinion. Not because I think it makes Murphy’s bill any less of a disaster to mental health policy, but because it should remind us that one does not need to wait for a mustachioed villain maniacally cackling over their evil ways to find an enemy worth fighting. Many of the people promoting the most horrifying, dehumanizing, dangerous things for people with disabilities are sincere, well-intentioned and nonetheless horribly, tragically wrong.

III.

Yesterday, I wrote for the Guardian again (they have great editors) about the London Sperm Bank’s policy of refusing donations from autistic donors and those with other neurological disabilities:

Reproductive technologies are being used to remove autistic people from future generations, not just to create “designer babies”. Privately run sperm and egg donation programmes, IVF clinics and laboratories around the world are making decisions that could eventually change the human race.

Last month, I joined more than 180 progressive academics, scientists, activists and public intellectuals in an open letter expressing concern over how new gene editing techniques allow for heritable human genetic modification: changes to the human genome that could irrevocably alter the future generations of humanity. New technology is emerging that will allow for “designer generations”….

Disability has always been contextual. Many individuals who are today diagnosed with learning difficulties or intellectual disabilities would not have been considered such in a society before universal literacy, for example. Tomorrow’s social and technological progress may lead to still new disabilities. demonstrating that the quest to eliminate disability will always be a moving target. Such changes may leave humanity less equal, less diverse, and perhaps even less human.

This is a very different kind of advocacy than the previous two. It isn’t about what level of funding disability will receive or what kinds of services people will get. In this particular case, it’s about what kind of people will be allowed to exist – but that isn’t the only thing that fits into the broader category it belongs to.

On the Council, we referred to this as “looking around the corner” work, enabling us to prepare for ways in which broader societal changes might impact people with disabilities. Within it, we included things like making sure that self-driving cars were accessible, that evacuation efforts after natural disasters included people with disabilities, or that wellness promotion initiatives in workplaces did not result in discrimination.

Sometimes “looking around the corner” topics became such a present issue that that name wasn’t really a good fit anymore, as in the case of physician assisted suicide or accessibility of ride-sharing apps. But in a broader sense, this advocacy is about how society at large will approach disability and disabled people within the context of technological innovations and other new developments that are not exclusively about us, yet nonetheless impact us a great deal.

It is hard to do this kind of advocacy, in large part because it brings us into contact with forces well outside the disability world. The truth is that while institutional inertia and state fiscal woes limit the availability of public resources, there aren’t usually strong lobbying efforts opposing disability services funding. That doesn’t mean it is easy to get – but there isn’t exactly an opposition. And in fights over service quality or type, we know our opponents intimately, often on a first-name basis, as they are our partners in other kinds of advocacy.

When we deal with this third type of advocacy work, we often find ourselves facing opponents (and needing to recruit partners) from outside the disability space. In doing so, it is suddenly all too apparent how small our world is and how comparably weak the disability community is as compared to other stakeholders and social movements.

It is an open secret amongst Washington, DC’s disability leadership that we are not really a viable political constituency. We could be – the numbers certainly justify it – but compared to the level of organization, money and mobilization in other minority communities or on the part of major industry groups, we are tiny. Trying to ensure that the needs of people with disabilities will be met on advocacy issues that merit the attention of the big political players is often a humbling experience.

Three articles, three kinds of advocacy. We all engage in different mixtures of the above, but I think this captures the gist of how disability advocacy can be classified according to type. What kind of advocacy do you engage in? Do you focus on just one of these categories or split your work across two or three? Are there others that I haven’t listed here? Feel free to weigh in in the comments. 🙂

P.S: Even though this is a personal blog, I would be remiss in my role as a non-profit employee if I failed to include the traditional New Year’s Eve fundraising appeal. If you feel like any of these kinds of disability rights work are important, consider donating to support ASAN’s end of year appeal. Any donation you make prior to midnight tonight will be matched by a generous anonymous donor. You can see more about ASAN’s work by checking out our annual report, available here.

Dealing with Accidental Discrimination

One of the core principles of disability rights activism is that lack of access for a person with a disability is a form of discrimination. Someone who holds a public event in an inaccessible building, or refuses to provide large print or braille materials, is not only violating the law – they are discriminating against a person with a disability. We use that word – discrimination – advisedly, intending with it to draw a direct parallel to someone operating a Whites-Only lunch counter or tacking on to their classified ad “Irish Need Not Apply”. And there is good reason for that – from the perspective of the person being excluded, there is little difference, and the less malicious intent of the person doing the discriminating does not change the nature of the exclusion.

But not every form of discrimination is the same. Civil rights law has long recognized the difference between disparate treatment – when someone engages in intentional discrimination against you because of your race, sex, orientation, disability or other protected class – and disparate impact – when an ostensibly neutral policy has a disproportionately negative effect on a specific protected class group. For example, a landlord that refused to rent to black prospective tenants would be engaging in disparate treatment discrimination. In contrast, a public housing authority that only awarded low-income housing tax credits – used predominantly by racial minorities – only awarding allocating those credits for use in predominantly black inner-city neighborhoods (leading to residential segregation) might be disparate impact discrimination.

Disparate impact discrimination, which can occur without ill intent on the part of the person discriminating, is not unheard of in non-disability civil rights law – the Civil Rights Act of 1964 has long recognized it and the Supreme Court ruled on a case earlier this year affirming the Fair Housing Act covered this kind of discrimination.

Social justice theorists often refer to disparate impact as institutional discrimination. To make things less clunky, let’s refer to disparate treatment as malicious discrimination and disparate impact as institutional discrimination.

Institutional discrimination is written into the Americans with Disabilities Act to a much greater degree than in other civil rights statutes, which generally require some form of class action litigation or statistical analysis showing widespread negative results before a disparate impact claim can be made. The ADA, in contrast, allows for an individual redress of institutional discrimination – the right to demand a reasonable accommodation from an employer, program or place of public accommodation.

The requirements of the ADA do not only prevent covered entities from refusing to hire or serve a person with a disability out of an irrational prejudice or whim. They require those hiring or operating a business or organization to actively work to make themselves accessible, even if it involves changing practices or architecture that were previously thought to be neutral. Under the ADA, not discriminating is more than just stopping a refusal to hire or serve a person with a disability. To truly not discriminate, one must take steps to remedy the institutional barriers that exist – from stairs to inaccessible communication methods – in a place of business. And unlike other civil rights statutes, an individual can assert the right for a business, school or program to make those changes, without having to prove that they impact a larger group of similar people to do so.

In many ways, that makes the ADA one of the most progressive civil rights laws this country has ever passed. It also means that sometimes, figuring out the right ways to handle institutional discrimination we see or face in our day to day life can be more difficult. After all, for a person to stop engaging in malicious discrimination all they have to do is…well…stop doing it! It’s easy! Getting them to decide to do the right thing may be more difficult, as is figuring out what to do when one suspects malicious discrimination but cannot prove it, but from the perspective of the discriminator, stopping malicious discrimination is comparatively easy.

Comparatively easy. Compared to what, you may ask?

Compared to stopping institutional discrimination. Someone engaged in institutional discrimination may not be aware of what they are doing until told. They may require convincing, or point to superficially valid non-discriminatory rationales for why they are doing what they’re doing. Sometimes, as with the failure to hold an event in an accessible location, they have no real excuse for their ignorance. Twenty-five years after the ADA, you’d be hard pressed to argue that any organization holding a conference or other activity open to the public should be failing to recall the basic accommodation of “hold this in a place wheelchair users can enter”. But there are other kinds of institutional barriers that an event organizer might legitimately not have heard of – and when those come up, it may not be possible to remedy them right away.

Conflicting Access Needs

A year or so ago, the National Council on Disability held an event in Atlanta on the school-to-prison pipeline and disability issues, focused on the issues impacting minority students of color with disabilities. The event was well attended and featured a wide variety of interesting and informative discussion on an issue that too often goes overlooked.

There was just one problem: the sound system was slowly killing me.

I don’t know if it was crappy microphones, feedback on the speakers, or demonic possession of the venue but every other person who spoke was accompanied by the dulcet tones of a horrific high-pitched screech. To make matters worse, what was head-splitting agony for me was only a mild annoyance to the other, almost exclusively non-autistic, people in the room. After an hour of the administrative staff trying and failing to fix the feedback, I asked if we might consider turning off the microphones altogether.

“We can’t – the CART transcription is being done remotely, and if we turn off the microphones the Deaf and hard of hearing Council Members and attendees won’t be able to follow the event.”

Meeting my access needs would result in a lack of access for someone else. I tried taking breaks, walking in and out of the room, pacing back and forth in the hallway, listening from across the hall, but nothing worked. By the afternoon, I had no other choice but to make an early departure.

You could very easily imagine how this situation could have played on social media.

“The National Council on Disability made it physically painful for autistic people to be in the room at their event!”

“NCD’s school-to-prison pipeline event didn’t accommodate autistic people!”

“NCD forced its autistic member to leave its school-to-prison pipeline event!”

“NCD tortured its autistic member out of the room!”

All of these statements, with the possible exception of the last one, are technically accurate. But in an important way, they aren’t honest. Figuring that out would be nearly impossible for the average person hearing about the situation second- or third-hand, who wouldn’t necessarily know about the conflicting accessibility issue. This is part of why resolving single cases of inaccessibility via public campaigns is so difficult, and why advocacy organizations typically look for patterns of behavior or specific policies to focus on, to ensure that a problem is systemic in nature and requires pressure rather than education to rectify. Sometimes access is harder than it looks – and while proper planning should catch things like buggy speakers and microphone feedback before the event starts, not every access problem can be fixed in the moment on the spot.

To take another example, at the Keeping the Promise Summit, convened by the Autistic Self Advocacy Network, Self-Advocates Becoming Empowered and the National Youth Leadership Network, autistic activists came together with activists with intellectual disabilities to come up with a unified definition of what is and what is not Home and Community Based Services (HCBS). The resulting document served as one of the inspirations for the very impactful Center for Medicare and Medicaid Services HCBS Settings rule, now transforming state service systems across the country. But it almost never happened.

SABE recommended a moderator for the event that they knew and respected. But when the event opened, most of the autistic delegates in the room found the person intolerably condescending. “She’s talking down to us,” many of our representatives complained to me, and asked me to confront her about our feeling that she was preventing the discussion of more complicated topics. With great indignation, I did so – only to learn from one of SABE’s leaders that many of the delegates with intellectual disabilities needed the moderator’s approach of repeating each topic under discussion in extremely plain language.

Later during the summit, the agenda called for us to split into small groups to talk about the dimensions of community living in more detail. Near the end of lunch, SABE’s leader came up to me. “We need to stay in a large group session – our members have trouble keeping track of the discussion in small groups. They go too fast!”

“Hang on a moment! We put small group discussions on the agenda specifically because many of our people feel uncomfortable speaking up in a large group format. If we stay in the large group, a lot of our people won’t know when it’s okay to talk and so won’t get a chance to participate. If you cancel small group discussions, you’re not respecting our access needs!”

What followed was a rather fascinating sight – the Presidents of North America’s two most prominent self-advocacy organizations stood in the center of the room yelling at each other. In that moment, I am certain we each saw in each other everything that had frustrated us all our lives.

I saw in him the tendency, very common then and still present today, of many in the Intellectual and Developmental Disability (I/DD) community to look at autistic people without intellectual disabilities as not really disabled, and thus not necessary to accommodate or think seriously about the access needs of. I’m sure he saw in me the many erudite experts whose jargon and unwillingness to explain themselves in simple terms were denying people with intellectual disabilities the tools they needed to have more than a token seat at the table. We were both loudly demanding our rights all over each other.

At the end of it, we managed to talk the situation through and kept the small group discussions – but dispatched several self-advocacy organization leaders to circulate among each of them to make sure everyone understood what was going on and that the pace was not moving too fast. We ended up working very closely together many times in the years to come, and are still in touch today.

Both the ASAN and SABE representatives could easily have gone home after that event loudly proclaiming that the other side was full of bastards that didn’t care about their access needs. That came very close to happening. But it didn’t, because we were both more committed to figuring out a middle path that would be imperfect for both of us but allow some degree of access for everyone in the room.

After the event, we kept the commitment by coming up with a modified means of communication that involved Skype calls with both voice and text components, to account for the discomfort SABE representatives had with text-based communication and the similar discomfort ASAN’s representatives had with conference calls. That system was definitely more time-consuming and cumbersome than I would have liked. But without that kind of creative back and forth to come up with imperfect solutions, the Keeping the Promise report would never have existed.

Does that mean we shouldn’t assert our accessibility rights? Of course not – after the incident in Atlanta, I made sure that future NCD events had a working sound system free of static, and strongly expressed my frustration with the prior event being inaccessible to me. Does it mean that people should only pursue official legal investigations as redress to institutional discrimination? Probably also no. Most people don’t have access to those means of justice, and they can be costly, time-consuming and ineffective. But it does mean that we should look for patterns of behavior before calling out someone accused of institutional discrimination as a bad actor, callous to the exclusion they are causing.

This is part of believing in institutional discrimination – believing that it is something that takes time and effort and creatively to fix, and that even good people can struggle in that process. Particularly when one is asserting an access need that is new and unfamiliar, it can take time to figure out a way to meet it. At times, it may be impossible to be accessible to everyone all the time right away. Figuring out a way to acknowledge this while still maintaining constant pressure for as rapid as possible a solution is one of the central dilemmas of disability advocacy.

Managing Undue Burdens

I remember a local autistic activist organizing a one day film festival approaching me in an extremely distressed mood. He had realized that while they had put in place captions and were prepared to make an American Sign Language interpreter upon request for the event, they had just realized that they had no plan for audio descriptions for each of the several movies they planned to show throughout the day. What if a blind person showed up? Should they should cancel the event?

We spent some time talking, and eventually worked out a few strategies recognizing that professional grade audio descriptions perfectly synced to the movie’s timing were probably beyond the abilities of a local self-advocacy group’s film day. If requested, another attendee could be present to describe uniquely visual content to a blind attendee or a description of it could be e-mailed in advance. Ultimately though, I explained that the ADA generally requires that an accommodation request be considered in light of the resources of the group it was being made to. That’s why it’s called “reasonable” accommodation – the extent to which an accommodation is or is not reasonable is dependent on the circumstances of those who would have to provide it.

Sometime after this, an activist campaign led by a blind comic book fan successfully pressured Netflix to audio-describe their original television series Daredevil and eventually all of their original content. This occurred after the film festival inquiry came to me, but I could very easily imagine the organizer coming to me and asking, “How is our failure to audio-describe any different from theirs?”

To that, I would likely give a simple response: “You’re not Netflix!”

The ADA explicitly recognizes something called the “undue burden defense” – the idea that employers and places of public accommodation aren’t required to make accommodations that would pose an undue burden on them – a concept that is very much tied to specific circumstances, like the cost of the accommodation, the organization’s size, number of employees, budget and other relevant factors. In short, the local film festival with the $1,500 budget has a very different set of obligations than the multi-billion dollar company.

Of course, Netflix would like to claim they’re not Netflix either – witness Uber’s continued disgraceful attempts to present themselves as ‘just a technology startup‘ and not subject to the ADA’s requirement to provide wheelchair accessible transportation. Claiming an undue burden has a justifiably bad rap – it is the first refuge of every corporate scoundrel trying to avoid even making an effort on disability accessibility.

But at some point, it matters what is and is not true. Netflix legitimately does have the resources to audio-describe all of the original content it produces, and could probably put in place a reasonable timetable to get its non-original library audio-described as well (something it has already accomplished for captioning, thanks to the litigation prowess of the National Association of the Deaf). A local autistic film festival legitimately can’t get in place audio-descriptions up to the standards blind people have a right to expect – but can make sure that captioning is available for Deaf and hard of hearing viewers, because of the more established nature of that accommodation. Most DVDs come with captioning already enabled, making this a relatively simple task. In the event that there’s a desire to show a film that doesn’t come with captions built-in, there is a sufficiently large market for CART transcription that it can be made available even on a small film festival budget.

Often, the way to solve undue burden problems is to look at ways of elevating responsibility to a more powerful actor. For example, an emerging best practice in disability employment is the creation of Centralized Accommodation Funds, which take responsibility for paying for reasonable accommodation costs for all disabled employees at a company. This means that a particular manager is never at a disadvantage for hiring an employee with a disability who has expensive accommodation needs, such as a deaf person who requires regular use of interpreters or CART transcription. Rather than come out of the budget of the operating unit with the disabled employee, a centralized fund pays for the accommodation from the company’s broader budget.

But this isn’t always possible. Many smaller businesses don’t have access to sufficient resources for CART transcription at all staff meetings, in the same way that a local film festival on a shoestring budget probably can’t commission audio-descriptions for a full length movie. That’s why the ADA does recognize the concept of an undue burden, and requires that employers and employees go through an interactive process to try and figure out an accommodation strategy that matches the employee’s need with the employer’s abilities, resources and circumstances.

It’s very easy, at one level, to look at the undue burden defense or the interactive process requirement and say they’re mere concessions to political expediency. That a perfect world’s ADA would allow someone to simply name their preferred accommodation and place all the force of law and justice on their side until it was received. And certainly, a perfect world’s ADA would have many things that ours does not. An proactive inspections and enforcement mechanism, for example, so that disabled people do not need to constantly be in the business of making complaints to get the law enforced. Or an easier means of getting people access to legal representation, a hard task even for those with means, much more so those without. But I don’t think that the perfected ADA would allow for demanding any accommodation from any entity at any time and at any place.

We don’t want an Americans with Disabilities Act that has all the impact and meaning of the East German Constitution – full of fine-sounding rights that everyone knows will never be enforced. We want an ADA that is practical, pragmatic and ultimately possible for those bound by it to follow. After all, if following the ADA was not realistic even for employers and places of public accommodation making the best of efforts, we would hardly have the capability to respond forcefully to those who willfully violate it.

Instead, let’s recognize that stopping institutional discrimination is often much harder than stopping malicious discrimination – but is still necessary and worth requiring as a matter of morality, law and justice. We should never have to compromise our access needs or give up our rights to be included and treated fairly. Yet alongside that, it is in our interests to acknowledge that figuring out how to be accessible isn’t always something one gets right the first time, and so look for opportunities to build systems of collaboration and education alongside and in addition to our confrontational advocacy, so that our enmity may seem more impactful in comparison to our friendship. If we can make our first instinct to teach, we can be even more sure of ourselves in targeting for more aggressive approaches those who deliberately refuse to learn.

(Almost) Everything You Need to Know About Sheltered Workshops: Part 2 of 2

Last Sunday, I posted Part 1 of “(Almost) Everything You Need to Know About Sheltered Workshops”. In it, we discussed why good people end up running bad services, how sub-minimum wage works, the problems with the sheltered workshop business model and how the National Council on Disability got involved in this issue.

At the end of our last post, the Council had just authorized a small fact-finding task force to learn about sheltered workshops and supported employment programs. Let’s pick up where we left off…

Why do families defend sheltered workshops?

In late 2011, the Council began a new initiative to understand the factors that drive sub-minimum wage for people with disabilities and come up with a plan to end it. We visited sheltered workshops and supported employment providers in seven states to inform ourselves on the issue before compiling recommendations.

To understand what NCD learned in those site visits, and the policy recommendations we put together for the Council’s later endorsement, it is important to spend some time highlighting where the opposition to sheltered workshop closure comes from. While some of it is driven by large provider agencies defending a business model that funds high salaries and subsidizes other less profitable programs, a lot of it is principled. There is considerable anxiety, particularly from families, about losing the functions that sheltered workshops currently serve. I’d like to highlight two reasons for this.

Sheltered Work as Respite Care and Day Habilitation

For a considerable number of families and a smaller number of providers we spoke to, the sheltered workshop was not viewed first and foremost as an employment program. For them, the workshop represented a place for people with disabilities to go to have something to do during the day, regardless of earnings. Many parents expressed concern that if their child did not have access to the sheltered workshop as a form of day activity, they would not be able to maintain their own employment. A common refrain was that if the sheltered workshop closed, “my son/daughter is going to end up spending their day on the couch watching television.”

Respite care, essentially giving a break to family members providing support to a relative with a disability, is a very real need for families whose adult relatives with developmental disabilities live at home, as is the case for almost three-fourths of adults with intellectual and developmental disabilities. There is a great deal of evidence supporting respite’s effectiveness in dramatically reducing institutionalization. One of the more recent studies I’m familiar with found that spending just $1,000 on respite care within the last two month reduced the risk of hospitalization for an autistic child by eight percent. (Of some interest to those reading this blog, the same study did not find access to behavioral interventions had any significant effect in reducing hospitalization.)

Access to respite historically took place out of home, and sometimes involved people with developmental disabilities being temporarily institutionalized, a model that certainly is not consistent with our values. In recent years, respite has shifted to a service that can be delivered anywhere, from in a person’s family home to at a volunteer or community activity of a person’s choosing. The point is to provide some form of meaningful engagement that can relieve family members of support work for a period of time. Many parent defenders of sheltered workshops look to them to accomplish this – in short, they want their children to have something to do during the day so they do not have to stay home to support them. This is not an unreasonable request.

Despite that, a sheltered workshop is by no means the only option for offering people with intellectual and developmental disabilities meaningful service-provision choices during the day. In the 1980s, then Assistant Secretary of Education of the time Madeline Will oversaw the creation of grants to states to establish and scale supported employment services. Supported employment brought supports like job coaching and other employment services to jobs in the community. Rather than workers with disabilities being forced to work in a segregated workplace in order to access employment supports, supported employment specializes in assisting those workers in finding a job consistent with their strengths, interests and priorities. Eventually, supported employment became a standard service option in most states’ Home and Community Based Services (HCBS) programs.

Supported employment includes not only assisting a person with a disability in locating a job, but also working with the job-seeker and the employer to craft job responsibilities that both match the worker’s strengths and the employer’s needs. The typical supported employment process begins with a “discovery” period, whereby a job-seeker with a disability is exposed to multiple different workplaces to help identify strengths and preferences, an particularly important process for job-seekers with communication disabilities.

Supported employment can also work with employers to adjust job descriptions and even craft new ones that meet both business needs and worker skill sets, far beyond the scope of what is legally required under the Americans with Disabilities Act. As of 2013, 113,271 workers with intellectual and developmental disabilities were receiving supported employment services on an ongoing basis to support their inclusion in the workforce.

The classic response to this is simple: not all disabled job-seekers will be able to find community employment. This is, of course, true. Significant disparities between state community employment rates of people with intellectual and developmental disabilities show that the right strategies can drastically boost the number of workers with significant disabilities who find community jobs. Still, just like the general workforce, not everyone will succeed. More sophisticated opponents of workshop closure have expressed concern that a person with a disability who leaves a workshop and does not find community employment will end up in a day habilitation center.

Day habilitation centers are segregated facilities where people with psychiatric and developmental disabilities often find themselves, performing make-work activities, arts and crafts and other things determined by a program schedule with little choice on the part of the people forced to spend their day accordingly. Day habilitation is not a new service – Medicaid funding to such settings predates sheltered workshops in many parts of the country. Medicaid got into the employment services business in the first place in large part to make sure that people with disabilities had an option other than day habilitation facilities.

Defaulting into day habilitation centers is a real concern for people with significant disabilities and their families. There is considerable evidence that facility-based day habilitation is worse than even a sheltered workshop environment, carrying with it all of the segregation without any form of training or economic renumeration. Still, this is not the only option for people with disabilities who do not find community employment. Using the same logic that brought employment services out of sheltered workshops and respite care out of institutions, more and more states are shifting how they deliver day habilitation services to more integrated models.

For example, the State of New Jersey sparked considerable outrage from provider organizations earlier this year when they proposed requiring that at least 75% of a person’s day habilitation services take place out of a separate facility. The state also proposed that there should “be no overall facility schedule for participants; each individual should have a unique schedule reflecting their interests and goals.” While the final plan backtracked somewhat from the proposal, the state still committed to moving day habilitation towards a more integrated model of services set by the preferences of the person being supported, outside of a segregated day activity center. Other states have been following similar paths. Vermont, which became the first state in the nation to eliminate the use of sheltered workshops in 2003, is one of a number of states to only deliver day habilitation within integrated settings. An integrated day habilitation program, where a person can choose how and where they spend their day, is a much better outcome than both a sheltered workshop or a segregated day activity center.

Many workers leaving sheltered workshops will find higher pay and better jobs in community employment. This may even be the case for most, depending on the workshop and the people served within it. Others may instead find that integrated day habilitation models offer a way to spend the day that is more meaningful and more integrated than a sheltered workshop environment. For much of the second group, sheltered work provided very little (if any) economic benefits. Someone compensated to the tune of a few cents an hour is hardly employed.

In these cases, sheltered work represented a form of backdoor respite care or day habilitation program: something for people to do during the day. And if the purpose of the workshop is not employment, the question that we have to ask is simple: can we not offer people better choices of how to spend their day than being shuttered in a facility pretending to perform manual labor? Of course we can, and in states across the country, we are. Lack of knowledge of those options represented one of the biggest sources of anxiety for families the Council met with in our travels.

Fear of Loss of Benefits

The second most common fear on the part of families (and even some people with disabilities) was the potential that workers may lose Medicaid benefits as a result of higher earnings outside of a sheltered workshop. Sheltered workshop employees are usually Supplemental Security Income (SSI) recipients, a program managed by the Social Security Administration that provides a small monthly check and immediate access to the Medicaid program for people with disabilities without sufficient work experience to qualify for Social Security Disability Insurance. While the higher paycheck that integrated work would bring could easily offset any reduction in SSI earnings, loss of access to Medicaid – the payer for the services that enable many people with disabilities to stay in the community with their basic needs met – would be catastrophic.

At one point, this would have been a very legitimate concern. Prior to 1980, SSI recipients who exceeded the income caps for the program could very easily get kicked off of Medicaid. In 1980, Congress passed the Social Security Disability Amendments Act of 1980, creating a three-year demonstration program allowing disabled workers to maintain access to Medicaid when their income rose above the level at which their SSI cash payments would be cut off. The program, referred to as 1619b for the legislative section that authorized it, allowed workers to maintain Medicaid eligibility if their continued employment would be seriously inhibited if they lost eligibility for Medicaid services. Congress later made this provision permanent in the 1986 Employment Opportunities for Disabled Americans Act, signed by President Reagan. The precise income level that workers with disabilities can earn up while maintaining Medicaid eligibility is set by a state by state formula calculated based on the average Medicaid expenses in that state, ranging from $27,244 in Alabama to $65,144 in Connecticut. Anywhere within that range is more than enough to allow the vast majority of those leaving sheltered workshops to maintain Medicaid access.

Other work incentive programs exist that allow people to maintain Medicaid benefits long after their earnings rise above the level at which SSI cash payments would be cut off. Section 201 of the Ticket to Work and Work Incentives Improvement Act allows states to set up a “Medicaid Buy-In program“, authorizing workers with disabilities to buy-in to Medicaid under terms set by the state. This represents a significant policy advance, as states can set income caps far higher than those under 1619b and can also waive the draconian asset cap for those using the Buy-In. To date, 46 states have made use of the Medicaid Buy-In. While each state sets different income, asset and other limits to the program, most states have left ample flexibility to allow workers with disabilities leaving workshops to stay on Medicaid.

During the Council’s site visits, we found limited knowledge of these work incentive programs, despite the fact the oldest of them were created over three decades ago. Many of the workshops had begun before the creation of 1619b – and some of the people with disabilities within them started working there almost as long ago. Even among younger workers and their family members, there was an understandable confusion as to how to navigate the fairly complex rules within the SSI program. Many people with disabilities had been sent into the workshop after achieving initial success in integrated employment because their family members were under the mistaken impression that their Medicaid coverage was at risk if they kept earning higher wages.

What practices promote better quality services?

I chose to focus on family member opposition in the previous section, but of course the Council spent time with many other stakeholders. People with disabilities expressed a consistent interest in earning more money and moving into more interesting community jobs, though many did express appreciation for the social opportunities even segregated programs afforded over what was available living at home. Service-providers usually defended whatever business they were in, whether that was sheltered workshops, supported employment or a mixture of both. This too was not shocking.

Of more interest were our conversations with state policymakers and advocates in the states who had succeeded in closing workshops while expanding supported employment. In these discussions, we learned a great deal about the strategies states could undertake to move away from the workshop model in a responsible way, without abandoning people with severe disabilities in the process.

Understanding Provider Business Models

Vermont was the state we learned the most about systemic change from. As mentioned earlier, the state had closed its last workshop in 2003, completing a process they had begun three years previously. Talking with leaders of the state Developmental Disability Service agency, I got a sense of the strong political will that was required to initiate that process in 2000. “We decided we would fund what we believed in and not fund what we did not,” commented one state leader, “That made the difference.”

To operationalize that belief required working with providers. Vermont had a number of advantages over other states, most notably the lack of a strong provider lobby to oppose the move. As a small state, policymakers also had the ability to build a relative consensus in support of shifting to integrated employment services. In a larger states like California or New York, the task of building political support for employment related systems change would likely be much harder.

Still, opposition to the transition existed. In early conversations with workshop leaders, one state policymaker recalled asking a simple question: “What if we just moved the folks who we can find jobs for in the community out of the workshop?” The answer came quickly from a workshop executive: the workshop’s economics simply would simply not work if that happened, because “with those people gone, no one would be available to do the work to meet our production contracts.”

This is a crucial point, and one that recalls the Congressional Research Service’s point about conflict of interest from Part 1. Sheltered workshop economics depend on their maintaining the employment of workers who likely could be supported to find jobs at or above minimum wage with community employers. Without that population, the workshop would not be economically viable and could not fulfill their contracts.

Because of that, one of the first and most important steps that states seeking to make progress on integrated employment need to undertake is a moratorium on new sheltered workshop placements. Without that, workshops will work aggressively to funnel capable workers with disabilities into their workforce, trading on the fears of family members and close relationships with schools and other public programs to do so. In short, as long as a sheltered workshop has an “open front door”, they will seek to replace those who leave with workers who might otherwise succeed in community employment.

It’s a rotten system, and one that should be shut down as soon as possible. Still, we quickly came to the conclusion that the focus of advocacy efforts to close workshops should work carefully to preserve the agencies running them. Many of the biggest workshop operators – Arc, Easter Seals and Goodwill affiliates, for example – were also the biggest supported employment providers in their area. Even where that was not the case, the agencies that operated workshops had often developed truly useful expertise in supporting people with significant disabilities in working productively.

With appropriate retraining and political will on the part of agency leaders, many workshops can and do “convert” to a supported employment model. To this day, the Vermont chapter of APSE – the country’s leading association of supported employment service-providers and supporters – runs an annual “Conversion Institute” devoted to teaching sheltered workshop leaders how to shift to a supported employment business model. If they can be convinced to evolve, today’s sheltered workshops represent vital elements of tomorrow’s supported employment provider network.

To encourage these transitions, states must clearly message their “seriousness” through a moratorium on new workshop placements and a set, time-bound schedule for phasing out the use of workshops for the existing population. State policymakers should not stop there, however. They have an even more powerful tool at their disposal: Medicaid reimbursement rates.

As discussed earlier, the majority of workshops and 14(c) certificate holders are also Medicaid providers. States can set Medicaid rates to sheltered workshop and supported employment providers to encourage the former to shift towards the latter. Some of this is as simple as paying more for supported employment and integrated employment outcomes than for sheltered workshops and segregated ones. (Several case studies on adjusting rates to incentivize employment are available here, for those with reason to delve into the details.)

A few states have adopted an even more innovative model, reimbursing employment providers for the number of hours that a worker with a disability works rather than the number of hours of job coaching or other services provided to them. The federal Center for Medicare and Medicaid Services will soon be issuing more detailed guidance on such “pay for performance” approaches.

Rate setting is a complex task, and generally benefits from some degree of external expertise. A number of national experts and technical assistance bodies are available to assist states in that process, like the State Employment Leadership Network of the National Association of State Directors of Developmental Disability Services or the Office of Disability Employment Policy’s Employment First State Leadership Mentoring Program, which pairs high-performing states with low-performing ones.

State policymakers need to ensure that service-providers are reimbursed at higher rates for people with more complex support needs. Many states use the Supports Intensity Scale for these kinds of determinations. At the same time, not all supported employment arrangements are created equal. Providers may feel an incentive to create small “mini-workshops” in the community through enclaves or mobile work crew models, unless their reimbursement models specifically incentivize supporting people to find employment most consistent with their interests on an individual basis (by paying higher rates for providers that help people with disabilities find jobs on an individual basis, instead of placing them in a small group cluster of jobs set aside for people with disabilities).

One of my Council colleagues represented a provider association in his home state of Massachusetts. Based on the experience he had during the site-visits, he began a dialogue with his state government and provider, family and self-advocate stakeholders on how to end the use of sheltered workshops in MA. The result – a blueprint on getting the State of Massachusetts out of the sheltered workshop business – ended up creating a concrete timetable for action in MA and serving as a rationale for the state legislature to commit bridge funding to help providers transition to supported employment models. In short, this has been done before – and we can do it again, where we choose to.

Get VR to the Table (Kicking and Screaming if Necessary)

States like Vermont and Washington, both of which had relatively high-performing employment service systems, also made sure to build strong collaborations with vocational rehabilitation (VR) agencies. VR, for all of its flaws, is the agency in state government with the most experience in disability employment and – your mileage will really vary on this, depending on the state you live in – the strongest relationships with the employer community. Technically, VR should be the first point of contact for helping people with disabilities find a job, while Medicaid funding can serve to sustain supported employment services after VR takes the initial steps of helping a person find a job and get acclimated to their workplace.

In practice, for people with intellectual and developmental disabilities, VR all too often deems them “unemployable”, leaving the Medicaid system responsible for paying for the full spectrum of employment services, from job search and discovery to ongoing service-provision. Medicaid is often ill-suited to this role, being predominantly a healthcare program, and the refusal of VR to serve this population results in Medicaid agencies needing to replicate skill sets that VR should already have. States are trying to address this by building memorandums of understanding between state Medicaid agencies – usually represented by the Developmental Disability operating division – and VR for the purpose of articulating how the two systems will work with each other and who will pay for what.

In the states we visited, however, VR and Medicaid still worked without consistent coordination – except where the VR agency had committed funding for joint infrastructure projects that gave it an incentive to serve people with intellectual and developmental disabilities, having already sunk money into preparing to do so. For example, Vermont prepared for its sheltered workshop closure by using VR funds to provide small grants to local providers to build supported employment programs.

There are a lot of things that VR and Medicaid can do together that would be nearly impossible for either to manage alone. In Vermont, we found that the use of VR funding for provider grants, combined with traditional Medicaid reimbursements to those providers, gave supported employment agencies the ability to “follow-along” with people who no longer required ongoing employment supports and be available in case people fell into crisis again. This would have been very hard to do with Medicaid funding alone, where expenditures usually have to be tracked to a specific type of service and beneficiary.

States need a clear set of “rules of the road” to allow both VR and Medicaid to invest in employment outcomes – and to allow both to take credit for successes and be held accountable for failures in the process. These things usually only develop when strong new leadership came into play, either from a Governor’s office or a particularly visionary VR or state Developmental Disability Services director. Without new leadership or external pressure, the existing VR system does not play well with others.

Leverage Federal Intervention

For the last fifteen years, advocacy efforts at securing more inclusive service options for people with disabilities have benefitted from a powerful tool. In 1999, the Supreme Court ruled in the landmark Olmstead v. L.C. case that people with disabilities had a right under the Americans with Disabilities Act to access any service that a state provided in a segregated setting in an integrated one as well. The Obama Administration’s Justice Department has been exceptional at enforcing Olmstead, bringing litigation that has forced states to not only close institutions but drastically expand community services across the country.

Though Olmstead was originally talked about mainly in the context of getting people residential supports out of institutions, the Justice Department has expanded the legal theory Olmstead uses to cover employment in recent years. In landmark cases in Oregon and Rhode Island, the Justice Department has required states to close new entrances into sheltered workshops, articulate a plan to shift people currently within them out of those settings and drastically expand available supported employment services.

Olmstead litigation is definitely “the stick” when it comes to incentivizing states to move away from sheltered workshops. But in my experience, it is one that is not always unwelcome. State leaders operate under any number of domestic political constraints. As such, they are often secretly quite pleased when the federal government relieves them of responsibility over deciding a difficult problem by requiring an otherwise politically difficult course of action.

While I wouldn’t go so far as to say that people in state government celebrate when the federal government sues them, it wouldn’t shock me if many are not altogether unhappy being forced to take steps they might otherwise find politically impossible. In our visit to Oregon, where the Justice Department’s litigation had recently begun, many of us sensed a cautious tenor of hope that the litigation would open up new doors to better services. In other states, fear of the Justice Department stepping in was prompting action that might otherwise not have been possible.

Engage with self-advocates and families

Change always has to be politically sustainable, particularly when it comes to disability service-provision. Wherever possible, provider associations should be worked with to convince them to cooperate with sheltered workshop conversion. Often, providers heavily resist change – in which case engaging with self-advocates and families becomes even more important.

Self-advocacy groups generally support these types of transitions – but may be too weak or dependent on provider organizations who provide financial or logistical support to effectively lobby. I’ve long argued that one of the most important things a state can do to prepare for progressive systems change is invest in the independence and self-sufficiency of a statewide self-advocacy association. By helping self-advocacy groups wean off the provider associations that often provide logistical support for meetings, transportation and other factors, self-advocates will have a much greater ability to pursue their own agenda to policymakers, even when it is at odds with providers.

Families will generally split on workshop closure. Some, particularly younger families, will be enthusiastically in favor of it. Others, particularly those whose children have been in sheltered workshops for a long time and remember the period before them, will be adamantly opposed. The states making the best progress on winning over families start from a position of understanding the major concerns that drive that opposition, as discussed earlier.

Clear and ongoing communication is necessary from the beginning of the process. Families need to hear clear solutions on what will prevent their loved one from being left without anything to do during the day if they don’t find a job. By beginning the process with a clearly articulated plan for expanding benefits planning, integrated day services and respite along with supported employment, many families can be won over. And of those that are not, frequently that transition will occur after the closure process has already taken place. In Vermont, we met with a mother who had led the charge against closing the state’s last workshop in 2003. Today, a decade later, her daughter was successful in supported employment, and her mother marveled at how experience in an integrated workplace had made her happier and more communicative.

Wherever possible, however, skeptics should be brought in to the process and allowed to brainstorm with state policymakers as to how to address their sincere concerns. Where opposition is implacable, state policymakers and advocates shouldn’t hesitate to go over the head’s of organizations that may be poorly representing their constituents and talk directly with individual family members and providers who are open to being convinced. Often, even opponents of workshop conversion will participate in a constructive planning process once it is clear that it will be taking place anyway.

Meaningful Integrated Day Services

Integrated day services, as discussed earlier, represent a crucial point on the employment and day services continuum. This is not just the case for people who don’t find integrated employment. Frequently, people with disabilities leaving workshops for supported employment find themselves working less than full time. Even if they are making more money working 5 hours a week at or above minimum wage than at 40 below minimum wage, many people still want additional service options to fill more of their day. If a person needs more intense support in order to access volunteer or recreational activities, it is important to have a funding stream that can provide that, lest someone be left without access to the community during the time they aren’t working. Integrated day habilitation can allow for that.

After the Council produced our initial report to Congress on phasing out sub-minimum wage, we began to work with congressional offices to craft legislation that would incentivize states to begin these transitions on their own. States respond to federal financial incentives, and we wanted to leverage the Medicaid program’s dollars to encourage states to pursue these transitions. The result, the recently introduced Transition to Independence Act (S. 1604), includes within it a strong definition of integrated day services:

(5) INTEGRATED DAY SERVICES.—The term “integrated day services” means services integrated in and supporting the full access of individuals with disabilities to the greater community to the same degree as individuals not receiving services that are provided consistent with all of the following:

(A) No overall facility or program schedule for the individuals receiving such services.

(B) Each individual receiving such services has a unique schedule reflecting the individual’s interests and goals.

(C) Activities take place on an individual basis or in small groups of individuals who choose to be served together.

(D) The majority of time spent receiving such services takes place within the broader community rather than within a single-site, fixed site, or center-based program for individuals with disabilities, regardless of the program size.

(E) The services are provided consistent with the requirements of section 441.710 of title 42, Code of Federal Regulations.

The purpose of this definition is to ensure that integrated day services are meaningfully different from the facility based programs of years past. This means more than just having activities take place outside of a fixed-site. It also means that people should be able to set their own schedules, pick their own activities and have the help necessary to make informed choices about those decisions. Too often, programs pass for “integrated” when they simply bus people with disabilities around to pre-arranged activities in clusters of individuals who didn’t choose to be served together. Integration isn’t just about location – it is first and foremost about choice, autonomy and control over one’s own life.

Will new Day and Employment Services support people with severe disabilities?

One more question often comes up during these transitions: will new day and employment services still serve the same people as the old system did? After all, if it is easier to support people with less complex needs in integrated settings, won’t providers focus most of their energy on the people who are easiest to assist?

This is a legitimate concern, albeit one that has been addressed successfully in other contexts. The closure of state institutions led to a similar conversation, with many opponents of de-institutionalization worried that it would benefit people with less complex needs while leaving those with more significant ones out in the cold. This did not occur, largely because of careful planning and investment that focused on ensuring the needs of all people with disabilities leaving institutions. A similar process can and is being implemented in states pursuing sheltered workshop closure and conversion.

In the de-institutionalization context, one of the most important tools for ensuring that people leaving institutions would be well served was the Money Follows the Person program. Created by the Deficit Reduction Act of 2005, Money Follows the Person authorized the federal government to cover 100% of the service costs for people with disabilities leaving institutions for the first year after they left an institutional environment. This ensured that people with disabilities leaving an institutional setting were at the front of the line for services, even if their state had a waiting list for those who had never been in an institutional setting.

While Congress has not (yet) created a Money Follows the Person for Integrated Employment, states can still imitate the policy implications of such an initiative, by requiring that those leaving sheltered workshops and facility-based day programs be put at the front of the line for new employment and day services. The NCD-inspired Transition to Independence Act would create similar incentives to Money Follows the Person at the federal level, by offering states bonus payments for shifting people in sheltered workshops and facility-based day habilitation programs to integrated employment and day services.

As mentioned earlier, many states use “tier” systems like the AAIDD Supports Intensity Scale to set payment rates higher for people with more complex needs. This is a critical component of making sure people with the most severe disabilities are not left behind. Case studies on this topic show that rates can be aligned not only with particular outcomes, but with the level of complexity of a person’s needs. Particular effort can be given to encourage certain provider agencies to specialize in serving people with “hard-to support” disabilities in integrated settings. Some states have even given start-up grants to provider organizations to focus on those populations, in exchange for agreeing to serve as providers of last resort. If rates are set high enough, providers can build a sustainable business model supporting people with very complex needs in an integrated, inclusive way.

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There are a wealth of other things that I could cover here, but I think we’ve probably covered enough for two (very long) blog posts. I have deliberately chosen to focus these posts on the issues that are most relevant to state policy, since I suspect my average reader is much more likely to be engaged there. At the federal level, the disability advocacy community remains actively engaged on things like putting pressure on 14(c) certificate holders with the ultimate goal of abolition, reforming contract preferences that continue to send hundreds of millions of dollars to sheltered workshops and shifting the incentives states operate under to encourage integrated employment outcomes.

If you are interested in reading more about those things, consider taking a look at the recently published interim report of the Department of Labor’s Advisory Committee on Increasing Competitive Integrated Employment of Individuals with Disabilities. Despite the clunky name, the Advisory Committee is the home of some of the most interesting discussions on disability employment policy today. For the severely wonk-ish amongst you, I highly recommend it.

A Note: Anyone who spends more than a few years working in public policy falls into jargon and inaccessible language, often without noticing it. If there is anything in this post that you don’t understand or don’t follow, feel free to comment with your questions. That also goes for those of you who have disagreements or conflicting views – I would love to hear from you too. As always, I reserve the right to moderate comments which are abusive, make personal attacks or seem to be made in bad faith.

(Almost) Everything You Need to Know About Sheltered Workshops (Part 1 of 2)

This was originally going to be one very, very long post. It has since been suggested to me that you may not want to spend your Sunday morning reading 7,000 words on sheltered workshops and disability employment policy. Tragically, there is no accounting for taste. 😛 I’ve split it up into two posts, the second of which will go live on Friday.

Let’s get started…

Disability policy is full of examples of yesterday’s innovation becoming today’s indignation. As my friend Anne Donnellan once put it, “The mark of anyone good in disability service-provision is that they’re at least a little bit ashamed of what they were doing twenty years ago.” The opposite of this is also true – many of the worst disability services come from becoming too attached to program models that were considered state of the art in previous decades.

There is a reason why my home state of New Jersey, which was wealthy and progressive enough to begin building special education schools for children with disabilities well before Public Law 94-142 required it, is today vastly behind when it comes to including students in the general education classroom. With all due apologies to Field of Dreams, the unspoken rule of disability service-provision is, “If you build it, someone is going to get stuck in there.”

A lot of things drive this. Some if it is economic – institutions, special education school and other facilities exclusively serving people with disabilities will generally face high fixed costs of operation, and will either require constant fundraising, unsustainable rates of state reimbursement or – most likely – the ability to spread those fixed costs over as many disabled people as possible. Other aspects of the problem are political. Any time you fund a new entity or class of providers, a new association and lobby will likely emerge to defend and advance their interests.

Lobbying to protect and expand funding is not a habit limited to segregated settings, but it does mean that states which built such settings a long time ago have a very hard time divesting themselves of them today. When I did work in New Jersey on special education policy, I could reasonably expect any state or county hearing on the topic to be packed with lobbyists from special education schools ready to oppose any effort to impose stronger oversight on topics like restraint and seclusion or educational achievement, let alone any kind of effort to return students to their neighborhood schools.

I have spent a lot of time thinking about this issue, because it drives one of the single biggest problems facing disability policy. While there are plenty of providers making small (or not so small) fortunes off of the suffering and segregation of people with disabilities, the vast majority of people defending outdated and overly restrictive forms of service-provision are not bad people. A lot of them are very good people. Many of them entered the disability service-provision space during the early waves of de-institutionalization, when little information existed about supporting people with severe disabilities in an inclusive way and models like group homes, sheltered workshops and segregated day habilitation centers represented the best alternative most people knew to the horrors of Willowbrook and Pennhurst.

Somewhere along the difficult path of building a scalable program model, their enthusiasm and passion turned to risk-aversion and an instinct to protect an established model they knew could provide a bare minimum of safety. Some evolved with the times, and decided to try new things to seek out more for the people they support, even if that involved some level of risk. Others didn’t. I think that was very wrong of them – but I also know that that resistance usually comes from fear or inertia, not malevolence.

I am certainly not one to canonize service-providers and family members for the simple act of working in the disability space (some might observe that my work in the autism world over the last decade has been about countering such undeserved sainthoods). At the same time, I have a real and genuine respect for those who chose to dedicate their careers to affirming the personhood of people with severe disabilities at a time when virtually no one believed in disabled personhood.

That is still something I respect, which is part of the reason I see organizations like Special Olympics or the Arc of the United States, both of which I have significant disagreements and significant collaborations with, as fundamentally different from Autism Speaks and other organizations who engaging with does more harm than good. Within the developmental disability advocacy community, we often find ourselves working against people who may have been our coalition partners on another day or another issue.

Nowhere is this more the case than with respect to sheltered workshops and sub-minimum wage. For reasons I am going to try and describe in this post, progress on moving people with disabilities out of sheltered work and into integrated employment is politically difficult and faces opposition from very well intentioned families and agencies. At the same time, a proper understanding of the motivations that drive this opposition can be an extremely valuable tool in defusing it. It also matters because there are real challenges in crafting public policy that moves away from sheltered workshops without abandoning the people within them. This is very possible and has been done before – but it means understanding the real and legitimate anxieties that people have about that process.

How do sheltered workshops work?

Sheltered workshops are work centers which exclusively or predominantly employ people with disabilities. Many hold 14(c) certificates, so named after the section of the Fair Labor Standards Act allowing certain employers to pay disabled workers less than minimum wage.

Today, approximately 228,600 workers with disabilities are paid under 14(c), the majority of which are paid less than the minimum wage (a minority of employers also use 14(c) certificates to pay under the prevailing wage rate required by federal contracts). While there are more workers than that in sheltered workshops, the population covered under 14(c) tends to be the most focused on by advocates, as many garner little economic benefit from their work, some making less than a dollar an hour. For those who are interested, the Congressional Research Service produced a long and interesting history on Section 14(c) in 2005, available here.

Table 1: Number and Percentage of 14(c) Employers by Type of Employer Type of employer Number Percentage Work centers 4,724 84.2 Businesses 506 9.0 Hospitals or other residential care facilities 294 5.2 Schools 88 1.6 Total 5,612 100 — This graph breaks down 14(c) certificate holders by type of employer as of 2001, when the Government Accountability Office conducted this study.

As indicated in the graph above from the Government Accountability Office’s 2001 analysis of Section 14(c), the vast majority of certificate holders are sheltered workshops (referred to by GAO as “work centers”), rather than private businesses. Since 2001, this distribution has moved very little, though the total number of certificates is about half what they were previously. Today, the majority of sheltered workshops are also Medicaid providers, receiving payment from Medicaid for providing employment and related services to their employees on top of whatever contract payments the workshop receives for disabled workers’ labor. The graph below (also from GAO) illustrates the breakdown of typical sheltered workshop funding streams. As you can see, few workshops could survive without funding from a state Medicaid agency.

Sources of Funding for Work Centers Funds from state and county agencies 46% Production contracts 35% Retail sales 9% Donations 2% Investment income 1% Other 7% — This pie chart shows the funding sources of the sheltered workshops surveyed by the Government Accountability Office in their 2001 report.

While workshops which receive Medicaid funding are nominally supposed to be preparing disabled workers for integrated work in the general workforce, this happens extraordinarily rarely. GAO reported that only 5% of the workers in centers they surveyed ever left the workshop for community employment. This does not appear to be for lack of interest on the part of the workers.

In a 2007 study in the Journal of Vocational Rehabilitation researching the preferences of workers with disabilities in sheltered workshops, researchers surveyed 210 adults with intellectual disabilities spread across 19 sheltered workshops as well as 185 of their family members. The majority of disabled workers and a slightly smaller majority of families expressed a preference for community employment over sheltered workshop placement. Interestingly, while youth and past integrated work experience greatly increased the likelihood that a person with a disability and their family members would favor community employment, severity of disability did not have a measurable impact either way.

More recently, research from Rob Cimera at Kent State University suggests that in so far as sheltered workshop employees do move people into the general workforce, they are generally not better for their workshop experience. After comparing 4,904 workers with intellectual disabilities who left sheltered workshops for supported employment services designed to place them in jobs within the general workforce to the same number who went straight into such services without a workshop experience, Cimera found the same likelihood of employment in both groups, with those who had never been in a workshop earning more money, working more hours and costing less to serve. For those interested in such things, Cimera’s analysis found the exact same outcome for autistic adults within his original sample.

What’s the problem with sheltered workshops?

Most of the public outrage around sheltered workshops has focused on the issue of sub-minimum wage compensation of workers with disabilities. There is a reason for that. Whatever you think the minimum wage should be (or even if you don’t believe there should be one at all), excluding disabled workers from its protections creates an inequity. Sheltered workshop employees can be paid as little as pennies an hour, deriving little economic benefit from their employment.

I recall one woman who I met when NCD sent a delegation to a Columbus, Ohio sheltered workshop to hear from workers, families and providers on this topic. She spoke about the joy she felt when she first started working there, causing her to tell her family that she was going to take them all out to dinner (as she put it, “nothing too fancy”) after she got her first paycheck. When that paycheck came, it was for only 38 cents – not enough to buy dinner, but more than enough to rob her of any sense of joy or accomplishment from her labor.

Sub-minimum wage employment typically works through one of two primary mechanisms – piece rate compensation or a commensurate hourly wage calculated via a time study. Under piece rate compensation, used typically in production or assembly work, a worker with a disability is paid per a unit of a product delivered. If the industry typically pays a piece rate, the rate is the same as that provided to the general workforce, with the caveat that workers who earn below the applicable minimum wage will not have their paychecks brought up accordingly.

Since piece rate compensation is relatively uncommon in the general workforce, most workshops who wish to use it will instead perform time studies, timing a non-disabled worker who is asked to represent “100 percent productivity” and then converting the number of units they are able to produce within a set time period (the Department of Labor’s technical assistance suggests 20-25 minutes is sufficient) to an hourly production standard. Workshops are then able to calculate a piece rate by dividing the prevailing hourly wage rate by the number of units produced by the model non-disabled worker. So if a non-disabled employee pulled in to perform a time study is able to produce 100 widgets an hour and the typical prevailing wage for widget production is $10/hour, the workshop may then pay a piece rate of $0.10/widget.

Commensurate hourly wages are calculated through a similar mechanism, except the employee with a disability is also measured by a time study, and is then assigned a productivity percentage for up to six months. To provide an example, a janitor who is observed and determined by a supervisor to be 25% as productive as a non-disabled co-worker being paid $9/hour would be paid $2.25/hour.

There are a lot of problems with this system, rooted as it is in an economy that is vastly different from the one most of us work in today. Non-disabled “model” workers in time-studies (who are often drawn from agency support staff) may be particularly industrious, setting a standard far higher than that actually used in industry. Alternatively, disabled workers being assessed for their own time-studies may simply be having a bad day, which could result in their being stuck with low wages for the next half-year. Particularly for workers with disabilities for whom high-pressure environments may exacerbate anxiety, motor issues or executive dysfunction, this seems to be a system designed to fail those caught in it. There are very few of us – with or without disabilities – who would perform well under that compensation approach.

More importantly, sheltered workshop assessments of productivity often leave disabled workers stuck in jobs they aren’t suited for. Usually, when a job isn’t a good fit for a particular person, they look for another one. If they can’t succeed in the workforce at all, they leave it and seek additional education or look for a meaningful non-work way to spend the day. For those in sheltered workshops, this is often not an option.

Workers with disabilities are frequently tracked into workshops straight out of school. In the Department of Justice’s investigation into Rhode Island’s Training through Placement and the Harold A. Birch Vocational Program at Mount Pleasant High School, they found an incestuous relationship whereby students leaving public school were tracked directly into sheltered work. Both the high school and Training through Placement maintained workshops, with the school acting as a feeder for the larger agency. To quote the Justice Department:

Students ages 14 to 21 with I/DD would participate in the Birch sheltered workshop for one or two 55-minute periods per day, sometimes to do work for TTP. At times when the Birch sheltered workshop faced deadlines, some students were removed from their regular classes and spent large portions of their school days in the workshop. Students were generally denied diplomas and received only “certificates of attendance.” Students at the Birch sheltered workshop were paid between 50¢ and $2 per hour, or were not paid at all, no matter what job function they performed or how productive they were.

The school provided virtually no opportunities for students to experience or prepare for real jobs and made direct referrals to adult sheltered workshops as the students neared the end of school. Because of the lack of integrated opportunities and direct referrals, invariably, the students would move on to an adult sheltered workshop, TTP, after they left school instead of to integrated work places….

…Many TTP clients had specifically and repeatedly asked for help to find and be supported in real jobs in the community. However, the state and city did not respond to their requests and did not make integrated employment services and community-based daytime activities available. For example, one person with I/DD, who has worked at TTP for approximately 30 years, said that he asked nearly every year to work in a hardware store, yet he was never assessed or received services or supports necessary for him to do so. When asked how he would feel about working in integrated employment, he said, “I’d feel I accomplished something . . . something to be happy about.”

This is not an uncommon problem. Even where schools do not possess relationships with particular workshops, state Medicaid agencies often set reimbursement rates for employment services that mean that workers who require support in order to find or maintain a job have little choice but to opt for a workshop placement. More importantly, workers with disabilities within workshops struggle to find support to leave the workshop environment, because the people charged with supporting their economic advancement are also their supervisors and have little incentive to lose their best employees.

The CRS report I mentioned earlier has a very useful insight, which I think captures the essence of the problem with workshops.

Institutional spokespersons, inevitably, wore two hats: first, as representatives of charitable institutions or related organizations; and, second, as employers of the disabled (or associates of such employers). In the latter context, they were employers of unorganized workers, by definition suffering a disability, likely disadvantaged economically, and perhaps unable effectively to represent themselves in the labor-management relationship. Calling upon the social services and sheltered workshop community for leadership had a certain logic: but, it also presented a potential conflict of interest. The pattern would persist to the end of the century.

At a basic level, sheltered workshops suffer from a fundamental conflict of interest. As a service-provider, the workshop is tasked with helping a worker with a disability to pursue their preferred career and maximize their earnings. As an employer, the workshop has little incentivize to lose their most productive employees or add to their payroll costs. Make no mistake: even non-profit workshops are businesses, and like any business, they will seek to maximize their profits and economic viability.

Workers with the greatest likelihood of success in the general workforce are those that workshop supervisors are most loath to part with, as they are depended on to allow the workshop to deliver on its contracts. Workers in sheltered workshops lack any recourse to improve their economic prospects – because the people whose job it is to assist them in doing so have a vested interest in keeping them where they are.

How did NCD get involved on this issue?

When I joined the Council in 2010, sub-minimum wage and sheltered workshops were both just emerging as issues on the national disability policy agenda. Attention to the issue had been raised by the Henry’s Turkey Service case, a particularly sickening instance of the use of 14(c) alongside wholesale abuse and theft from workers with disabilities in Iowa. Within the developmental disability advocacy world, attention was beginning to shift from the long-term project of closing large, state-run institutions. With over a dozen states having no such facilities anymore and many others being well on their way to join them, the de-institutionalization fight seemed largely won. The focus could now safely shift to opening up the workplace to people with disabilities now enjoying the benefits of community life.

Near the end of 2011, two significant developments occurred that elevated both sub-minimum wage and sheltered workshops to the Council’s attention. The first was the introduction of the Fair Wages for Workers with Disabilities Act, a bill proposing to phase out 14(c) over the course of three years. While the legislation didn’t have a huge chance of passage, it served as a rallying cry for the community and pushed organizations to take public positions on 14(c) who might otherwise have stayed on the fence.

The second was an informational bulletin on employment services released in September by the Center for Medicare and Medicaid Services, the federal agency tasked with overseeing Medicaid. The majority of sheltered workshops are Medicaid providers, with their business model dependent on being able to receive payment from a state Medicaid agency on top of whatever profits they realized from service and production contracts. The new informational bulletin did not cut off Medicaid funding to sheltered work – but it did state that it must be time-limited in nature. While the bulletin left to states how to define and enforce that time-limitation, it represented the first major policy statement from the federal government placing pressure on the sheltered workshop industry. Medicaid funds flowed to workshops in the name of “pre-vocational services” designed to prepare people for the real workforce. CMS’ new bulletin made clear that a workshop industry that kept its workers in the same place for decades on end would not be able to draw funds from Medicaid for “preparing” them for the real workforce.

The Council began to debate the issue of workshops, sparked by requests from the advocacy community that we take a position on the Fair Wages legislation. In the beginning, there was no clear consensus on the issue. While I and several other members with backgrounds in the developmental disability community felt strongly that the Council should endorse a phase-out of 14(c) (though not necessarily on the timetable set out by the Fair Wages bill), others were more skeptical. The provider associations that opposed eliminating 14(c) worked alongside the disability rights movement on 9 issues out of 10. When it came to advocating for increased funding for disability services or stronger enforcement of the ADA and IDEA, they were usually alongside us. For many figures in the community, there was understandable confusion on how to come down on an issue where people they considered close colleagues were taking diametrically opposed sides.

After some debate at our quarterly meeting in December 2011, the Council decided to convene a fact-finding task force of NCD members tasked with investigating the sheltered workshop issue and developing recommendations for a Council position. At the time, it felt like kicking the can down the road. I was unhappy that the Council didn’t take a more committed position from the start. However, in retrospect, the decision to convene a task force was one of the best things to come out of my time on NCD. Had I been successful in pushing through a brief Council position endorsing a phase-out of 14(c), we might have garnered some brief media attention and added our name to a growing list of other entities that had announced the same position. Instead, the task force set as its goal a comprehensive investigation of the sheltered workshop issue. That investigation would eventually give us the knowledge, legitimacy and consensus to not only recommend eliminating 14(c), but to put forward a real plan as to how it could be done responsibly and effectively.

NCD allocated funds for the members of the task force to travel to seven states between March and May 2012. Our goal to visit both sheltered workshops and integrated work sites and talk to the employees with disabilities, co-workers, family members, service-providers, policymakers and other relevant stakeholders in the area. The visits were educational, and not only for those members on the fence regarding sub-minimum wage. Even those of us already personally committed to 14(c) abolition learned a tremendous amount about the practical, policy and political steps that were necessary to accomplish that transition in a way that did not leave the people served by sheltered workshops without access to meaningful day and employment services. The information we received would give us a blueprint for writing recommendations on the sheltered workshop issue and gave me new insight into the challenges facing state policymakers in moving publicly funded disability services towards integrated employment outcomes. I’ll be sharing more details on those experiences – and any insights that came out of them – in Part 2 of this post.

Tune in Friday for reasons why families defend workshops, strategies states and advocates can use to move towards integrated employment and information on inclusive service options for people with disabilities who cannot yet find community employment. Till then, feel free to share and comment!