Category: Leaving NCD
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.
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.
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.
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.
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.
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.
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.
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!
Leaving NCD: Accomplishments and Disappointments from Five Years of Public Service
Today is my last day as a Member of the National Council on Disability. In previous years, Council Members were never quite sure of when their final departure would be, as they served until replaced by the President. Since the passage of the Workforce Innovation and Opportunity Act cut the Council down from fifteen members to nine, I have a more definite departure date than some of my previous colleagues.
While I would have been glad for the extra time, I also appreciate the opportunity to reflect on my last five years of public service. One of the frustrating aspects of government work is the need to constantly be moving from one crisis to the next. Because of that, opportunities for introspection are fewer than I would like.
I owe a profound debt of gratitude to President Obama and his team for inviting me to serve on NCD, and an equally great debt to the extraordinary staff and fellow council members at NCD who I had the privilege of working with. Very few people have the opportunity to serve in government, even in a part-time, advisory role. My service began when I was only 22 years old, making it even more unusual. Fortunately, in the five years I spent on NCD, I was almost always treated like an equal by my more senior colleagues, many of whom brought decades of policy experience of their own. I also had the honor of being entrusted with leadership roles on some truly fascinating projects and policy committees during my tenure. Because of those experiences, I have decided to start this blog with a series about a few of the areas of work I'm most proud of – as well as the areas I most regret not getting a chance to act on.
I have the pleasure of spending my last day on the Council working. Today, I'll be speaking at a congressional briefing on mental health policy in my last official Council appearance. As a result, I'm going to schedule my first blog post to launch the day my term ends (I didn't write this today) and hope to have some interesting feedback by the time I return home this evening.
Before I begin, I want to preface this blog project with some information about my intentions. As a rule, I don't want this blog to be self-promotional or too focused on my work. I have created it very specifically because I want a space to write that is not within an official organizational context. Anything that you read here is me and me alone, and should not be attributed to ASAN, NCD or MySupport. It is also my sincere ambition to turn this into a place where I can write about (and have) passions that are entirely disconnected from disability advocacy. If you subscribe, be prepared to hear my opinions about topics like Star Trek tropes, Jewish culture and religion, travel stories and even occasional forays into cooking food (G-d help me on that one).
At the same time, I've felt for a long time that there is a disturbing disconnect between well-established practices and norms on the part of professional disability rights advocates and the information available to the average member of the disability rights grassroots. We spend a lot of time communicating with people about why we must change the status quo, but give them very little information as to how that can be accomplished. At best, we will occasionally tell them who to call and provide a few talking points, but very little is transmitted that might allow a person to begin doing serious disability rights work outside the direction of a national organization or association.
This often leads to misunderstandings and significant tension between those employed to work on disability rights advocacy full-time and the people they represent and must mobilize to pressure policymakers. It is also the cause of a great deal of just plain ineffective advocacy on the part of both the grassroots and the professionals. I also believe it may be part of the reason why service-providers have much more political power than self-advocates and even families in most state and local disability advocacy. To address that, I am going to try and write about work I did on the Council giving as much detail as I can to the underlying "how to" of what I was involved in, not just the why.
While there are certain constraints that anyone involved in the policy process has to operate under regarding what I can and cannot discuss publicly, I will try and be as open and straightforward as I reasonably can. It is my hope that one of several functions this blog can serve is to explain the mechanics of effective public policy advocacy to a public that may not have access to the extraordinary teachers and mentors I have benefitted from over the course of my last five years on NCD and my last ten years doing disability rights activism.
With that in mind, below are the areas that I hope to cover in describing my time on the Council. Posts will be whenever I have time and on no set schedule. If reading about these look interesting, feel free to subscribe to get an e-mail update when I post.
Sheltered Workshops and Supported Employment
De-Institutionalization and Community Living
Parenting Rights of People with Disabilities
Social Security Reform/Protection
Disappointments
Educational Achievement and Inclusion
Mental Health Policy and Support
SSI Asset Test
Department of Labor overtime rule
Post-secondary education access
I have scheduled my first blog post in my "Leaving NCD" series to post tomorrow, after my final day on the Council. I'm going to start with a post on one of the areas I'm most passionate about and still engaged in with ASAN: sheltered workshops, sub-minimum wage and supported employment. Check back here this evening for a look.