Category: Uncategorized

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.

I.

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.