We Must Take Disability and Aging Support Work Seriously


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Early in my career in disability rights advocacy, a friend approached me to talk about her son, Charlie. Charlie had a disability, like me – but unlike me, his disability came with impairments that prevented him from talking and sometimes caused him to hurt himself. His mother, my friend, wanted to make sure that the organization I was running at the time represented Charlie’s interests along with those of people like myself. I told her we certainly wanted to do that – but that it would be helpful if I could get to know her son in person to make sure I understood the kinds of needs he had.

Charlie and I both lived in the same town, and so I was able to meet him several times at a local mall and coffee shop. Each time, he was accompanied by his support worker, who helped Charlie navigate the world. Even though he didn’t talk, Charlie had a vivid and powerful personality, finding ways to express where he wanted to go and what he wanted to do at any given moment, even without any words. One of the things that struck me as I got to know Charlie was that a big part of his support worker’s job was knowing what not to do: while the worker was always ready to step in if Charlie was in danger, he was careful not to stop or even redirect him if he decided to move in a direction different from what they planned.

I learnt that this was an important principle in supporting Charlie in many things. For example, every week Charlie and his support worker would go to the local community pool building, where his worker would help bring Charlie to the front door, stopping next to the door open button placed there to facilitate wheelchair access. If Charlie wanted to go swimming that day, he would press the button. If he didn’t, his support worker would know that Charlie preferred to do something else, and they would go elsewhere. Thus was Charlie able to live a self-determined life, despite lacking any speech and having a significant intellectual disability. Because he had excellent support staff, Charlie was able to live in the community, make his own choices and participate in the same kind of activities as anyone else.

Charlie and I had immense differences – but there were also things we had in common. We wanted to explore the world around us, go places and see things with people we cared about and trusted. The things Charlie wanted were things all of us want. To get them, he needed very high-quality support and assistance. Though he passed away several years ago, I still think about Charlie whenever I think about how to approach support services for people with significant disabilities.

Too Often, We Don’t Take Support Work Seriously

America is in the midst of a workforce crisis in disability and aging services. From 2015 to 2050, the number of senior citizens is expected to nearly double, while the number of people over the age of 85 (a group with intense support needs) will more than triple during that period. As the population ages, the demand for support workers will only intensify. Meeting this need would be difficult even if we were starting from a stable base. Unfortunately, we are very far from that.

From 2005 to 2015, personal care attendants – the most common type of in-home support worker – saw their wages drop in real terms. The bulk of the in-home support workforce is part-time, and over half must rely on public assistance to make ends meet. Unsurprisingly, turnover rates are estimated at between 45 to 65 percent, meaning that people with disabilities, seniors and families face an ongoing battle to get access to support workers that can meet their basic needs, let alone support the kind of independence Charlie had.

We are taking one of our society’s most important tasks – the provision of assistance to people with disabilities and seniors – and rendering it employment of last resort. As the population ages and demand for support work increases, these problems will accelerate.

Recently, proposals to establish a federal “job guarantee” have referenced disability and aging support as an area to employ workers who cannot find jobs elsewhere. Increasing federal investment in support work is very worth doing. If those proposing a “job guarantee” really mean increasing federal funding for necessary labor-intensive activities, like child care and support work, such a measure would be welcome. For all intents and purposes, it would function like a permanent version of the Obama stimulus program, which expanded the federal share of Medicaid spending for several years to help avoid benefit cuts and resulting job losses. Such a program of federal investment would undoubtedly create jobs – but it would not in any meaningful sense be a “job guarantee”.

An actual “job guarantee” program would either require direct public employment or some form of private right of action for unemployed workers (akin to the original version of the Humphrey-Hawkins Act). Its purpose would be to ensure that someone – be it the government or publicly-funded surrogates – acted as employers of last resort for workers who – by reason of economic downturn or skills mismatch – could not find jobs elsewhere. The number of people employed by such a program would grow during economic downturns and go down as the economy improves – a true “employer of last resort” program. Including support work in such an effort could have serious unforeseen consequences.

Failing to Take Support Work Seriously Can Lead to Disastrous Policy Consequences

Disability and aging services are already seen as employers of last resort in many parts of the country. Most funding for long term services and supports (a term of art that refers to most services to people with disabilities and seniors receive, outside of education and traditional medical care) comes from Medicaid and Medicare. For individuals who will require support on a long-term basis, Medicaid is the primary payer.

This means that for wages to rise, the state must increase Medicaid rates and fund direct government expenditures. The bulk of Medicaid providers delivering in-home services to people with disabilities operate on minimal margins. As a result, there are comparably limited opportunities to raise compensation by shifting income within a particular agency from capital to labor. In most Medicaid-funded agencies, increases in worker compensation must be funded by an increase in Medicaid rates. Effectively, as the entity paying for service-provision and setting the terms under which it will be delivered, the state is the true employer of many Medicaid-funded support workers, even if they have a different employer of record.

Unfortunately, even relatively progressive states find it much easier to raise worker compensation through regulation, like minimum wage increases, than by direct government spending.

This can lead to some perverse policy consequences – in New York, for example, where the state legislature passed a $15/hour minimum wage for fast food workers, the average wage for most forms of support work has stagnated at below $12/hour. This creates a severe challenge for home care agencies and other trying to hire Medicaid-funded support workers.

This is not to say that fast food workers – and others – do not deserve a $15 minimum wage. All workers do. Instead, it should call attention to the ways in which taking a selective approach to minimum wage law can create serious labor market distortions. Support work will always face a risk in these kinds of situations, because it is disproportionately funded by direct state expenditures – thereby requiring an “on the books” investment from public coffers.

Other sectors, like restaurants or manufacturing, give policymakers the chance to raise compensation by regulation alone, without direct spending. In practice, the economic impact of raising worker compensation by direct spending of taxpayer dollars is similar to doing so by regulation. The economy only has so many workers, and increasing the cost of labor has an effect on prices and return on capital in much the same way that increasing spending requires additional taxes. But politically, direct government spending is often more difficult than regulation.

What’s more, even when support workers are included in minimum wage increases, states often choose to raise Medicaid rates only high enough to allow support work wages to comply with the new minimum wage, not maintain the relative position support work might have had previously. If in-home support workers were making $1-$2 above the minimum wage prior to a minimum wage increase, but are now only being paid minimum wage afterwards, the purchasing power of the disability and aging service sector has diminished significantly. While some may choose to use this as an argument against raising the minimum wage, a more obvious solution presents itself: accompany minimum wage increases with boosts to Medicaid rates, so as to allow support work to both comply with the law and maintain (or improve) its relative position in the economy.

This kind of solution can easily be prioritized when the point of a program is to offer the best possible support to people with disabilities. Maintaining a stable workforce is a necessary part of that. In the context of a job guarantee program, where employing workers during periods of economic downturn is the primary goal, maintaining the relative position of support work in the economy would be a secondary priority at best. Support work would be further cemented as an employer of last resort, with all the corresponding consequences to turnover rates and worker quality.

Prioritizing Employment Over Support Outcomes Can Cause Problems

The emphasis of the disability rights movement has long been on empowering people with disabilities to control our own lives and support. Similarly, unions work to improve the pay and working conditions of the workers employed providing support services. This creates many common – and some conflicting – interests.

Disability rights groups and unions have partnered in pushing state legislatures for increases in worker compensation. But historically, disability rights and organized labor have clashed as much as they’ve collaborated. Deinstitutionalization provides a clear example.

In 1975, the American Federation of State, County and Municipal Employees (AFSCME) issued a report entitled “Out of Their Beds and Into the Streets,” calling for a moratorium on the closure of state institutions and the resulting shift of people with disabilities into community life. AFSCME attacked de-institutionalization, then the major goal of disability rights advocates across the country, as mere cost-cutting. A wealth of research has since shown that people with developmental disabilities fared far better in the community than in institutions. The unions representing workers in institutions had a strong economic motive to oppose the shift to community based services, since pay and benefits were usually worse than those provided in institutional conditions. This led to severe conflicts between disability rights groups and public sector unions throughout the country.

These arguments, similar to those between prison guard unions and those seeking to reduce mass incarceration, have contributed to bad blood between unions and disability rights activists. They are also relevant to the job guarantee discussion. Including support work in a job guarantee system whose purpose is to maximize employment would likely exacerbate conflicts with disability groups whose interest is in maximizing the quality of support, not the job security of those providing it.

For example, people with disabilities have fought for the right to hire and fire their own support workers, a right that could easily come under threat under a program whose primary purpose is maximizing employment, not support quality. Increasing worker pay through more investment in the existing system of disability and aging services offers a win-win for both workers and people with disabilities. Guaranteeing people a job providing intimate levels of assistance to people who want to pick their own support workers does not.

Recent efforts to build common ground between disability rights groups and unions on these issues show that these tensions are not inevitable – but they require the consideration of factors other than maximizing employment to make them work. Working together, disability rights groups and unions have developed frameworks that allow people with disabilities to hire and fire their own workers, even as unions retain the right to negotiate pay and benefits with the state as a joint employer. Similarly, as unions have worked to organize workers providing community-based services, deinstitutionalization is no longer as adamantly opposed by the labor movement.

Disability rights and unions can and do have productive collaborations, so long as disability rights groups recognize that increasing worker compensation helps disabled people and unions recognize that the design and implementation of disability and aging services must be focused first and foremost on the preferences of those receiving support, not those providing it.

Recommendations

If advocates wish to include support work in a federal job guarantee proposal, they should do so by funding a permanent increase in federal investment in home and community-based services to seniors and people with disabilities. Under our current service system, this could take the form of an increase in the Federal Medicaid Assistance Percentage (FMAP) – the percentage of Medicaid costs born by the federal government – for community-based support, perhaps offset by a corresponding reduction in the FMAP for institutional care. Disability rights advocates have used such policy measures before in temporary or limited programs, like the Money Follows the Person Demonstration (which had the feds cover 100% of the costs of a person’s community-based support for the first year after they left an institution) or the Community First Choice State Plan Option (which increased the federal share by 6% for certain community-based attendant care services).

Creating a permanent FMAP bump for community-based support would inject billions of dollars into community-based services, expanding services to people with disabilities while expanding job opportunities for workers. This additional federal funding could be tied to maintaining worker compensation at a certain base rate, so as to ensure that the workers that provide complex and difficult assistance to seniors and people with disabilities are fairly compensated. While not a “job guarantee,” such an investment in one of the fastest growing areas of the economy would support the goal of full employment – without hurting people with disabilities through approaching support work as an employer of last resort.

If calling such an investment part of a “job guarantee” package makes it easier to pass, then this is relatively harmless, so long as it targets resources towards the existing service system and treats those providing support work as professionals.

Better still, such proposals should include measures to create more support jobs, by expanding services to people with disabilities who are not yet eligible for publicly funded in-home support. Today, the bulk of support work is uncompensated, in part due to income and asset restrictions on who can get Medicaid-funded services. The creation of a long-overdue universal entitlement to in-home support services would accomplish this goal.

Progressives should also look for opportunities to take into account the role support work should play in other priorities, including state minimum wage campaigns. State legislation and ballot initiatives to raise the minimum wage should incorporate corresponding increases in Medicaid rates for in-home support work, to avoid further exacerbating the workforce crisis in support work through wage compression.

This may require advocates to work across silos, putting forward proposals to increase spending on Medicaid at the same time and within the same legislative or ballot mechanisms as proposed changes to labor law.

Finally, progressive groups must invest in disability policy expertise. While many on the left were impressed by ADAPT’s leadership in the fight against Trumpcare, few have taken the time to understand the group’s opposition to institutionalization and activism against the nursing home lobby.

For most disability rights activists, securing Medicaid funding is only one part of a larger agenda of changing the way disability support services are delivered. Liberal and left think tanks, advocacy organizations and funders should reach out to disability rights leaders to explore how to build their expertise and competency with these issues.

The merits of a job guarantee program are well worth discussing (and beyond the scope of this article). Regardless, it is important that we do not fall prey to the fallacy of seeing aging and disability services as a place for make-work for those who cannot find employment elsewhere.

It is that kind of thinking that has brought us to our current crisis, where support work becomes the “employer of last resort” and seniors, people with disabilities and workers alike suffer from high turnover, inadequate compensation and insufficient policy attention. We can do better – and the first step is taking the people who do this work and those who need it seriously.

Ari Ne’eman is a longtime activist in the disability rights movement. He currently runs MySupport.com, an online platform helping people with disabilities connect with support workers that share their values, and is working on a book on the history of disability in the US for Simon & Schuster. Previously, he ran the Autistic Self Advocacy Network and served as one of President Obama’s appointees to the National Council on Disability.