Category: economics of disability

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

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 18th 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 7th 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 (32nd 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!

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.