Disability is an Immigration Issue. Immigration is a Disability Issue.

One third of the US workforce that provides in-home long term care (LTC) to aging and disabled people, Medicaid Home and Community Based Services (HCBS) particularly, are immigrants.

1.5 million HCBS beneficiaries self-direct their services. And, although different states’ HCBS programs operate in different ways, self-direction generally means that the aging and/or disabled person (or the person making decisions on that person’s behalf), select the individuals who are paid to directly provide the LTC. In effect, the people relying on in-home services are “employers” and the direct LTC provider is their “employee”. Some state programs have systems where the HCBS beneficiary are “co-employers” with an agency that handles the payment management system for the direct LTC provider. Some state programs allow HCBS beneficiaries to exercise full budget authority including all aspects of employing their direct LTC provider. Regardless of the specifics of state programs, state programs which offer self-directed services center the HCBS beneficiaries as the decision-makers in “management” of the “workplace”.  The “workplace” is the HCBS beneficiary’s home. 

For years the #DisCo’ has engaged in full throated and aggressive advocacy for self-directed services, while responding to the workforce shortage has amounted to pointing to the shortage’s impact on the ability to live in the community and offering flaccid advocacy towards improving worker wages (but notably NOT improving working conditions) as a response. The #DisCo’s self-centered approach to the issue is best summarized by Alison Barkoff the Biden administration’s Principal Deputy Administrator for the now-defunct Administration on Community Living (ACL): “The shortage of direct care workers has become a national crisis and a serious civil rights issue. Increasing numbers of people with disabilities and older adults who want to live in the community – a right protected by the Americans with Disabilities Act and other civil rights laws – are unable to get the services they need to do so. The Direct Care Workforce Capacity Building Center is an important step toward addressing the challenges to recruiting, training and retention of these critical professionals and creating the robust, stable workforce we need to meet growing needs.”

Additionally, national advocacy organizations like Caring Across Generations have, in the past, floated the idea of a work permit visa program like the H1b program, which allows for employers to hire “nonimmigrant aliens” to address the yawning lack of home health LTC workers that will only grow larger as aging Boomers in need of LTC begin to outpace available in-home workers.

Although organizations such as Caring Across Generations spent the Biden years promoting strategies to address caregiver shortages across all industries that included the use of immigrant labor, these organizations are not stepping up to provide legal defense funds or support for workers being subjected to immigration enforcement activities. They offer no guidance documents for caregivers or the people who use them should an enforcement officer present at the workplace. They are singularly focused on preventing cuts to Medicaid- HCBS specifically.

Not a single guide or resource from the #DisCo has been released to remind self-directing aging and disabled people that current immigration profiling activities include their workers with immigration status, or making sure self-directing people know that they can protect their workers and refuse warrantless entry to their home as the workplace. Usually quick to offer a “statement of solidarity” or “joint letter,” the #DisCo has been remarkably slow to address actions that are deporting and ejecting the friends, neighbors, family members of, as well as the actual home health workers they employ. 

After decades of intimately correlating #BigDisCo’s civil rights movement work to the ability of HCBS beneficiaries to employ their own direct LTC providers and live in the community, not an institution, the current, unmitigated SILENCE on the attack against immigrants on the part of ANY disability advocacy groups or leaders is curious for one significant reason:

the chronic shortage of direct LTC providers shifting into a full-blown crisis will result in the institutionalization of HCBS beneficiaries.