As House Republicans deliberate over their efforts to ram through a repeal of the Affordable Care Act that slashes $880 billion from Medicaid, one might be forgiven for believing that the only threat to the health care of low-income Americans and people with disabilities is coming from Congress.
No such luck.
Tuesday night, Secretary of Health and Human Services (HHS) Tom Price and Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma issued a letter to the nation’s governors laying out their vision for Medicaid. In the letter, they indicate a willingness to waive longstanding rules that are designed to protect low-income Americans from coercion, poverty, and exploitation.
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Price and Verma assert that “rigid and outdated implementation and interpretation of federal rules” hinder the Medicaid program from accomplishing its goals. They reiterate a popular (and false) conservative talking point that by providing states additional funds to expand Medicaid, the Affordable Care Act discouraged them from addressing the needs of people with disabilities on traditional Medicaid. Finally, they lay out HHS’s willingness to grant almost every ill-advised “flexibility” request in the right wing’s wish list on Medicaid—many of which place people with disabilities, seniors, and low-income Americans at extraordinary risk.
Making Medicaid Harder to Access
The letter indicates the Trump administration would be willing to let states introduce premiums and higher cost-sharing for Medicaid beneficiaries. These measures were rejected under the Obama administration, since they interfere with the program’s ability to serve low-income people. But based on Price’s letter, they now look likely to sail through.
In particular, Price and Verma suggest states may wish to apply for permission to allow “emergency room copayments to encourage the use of primary and other non-emergency providers for non-emergency medical care.” It’s a laudable goal, but in rural areas where there is a shortage of clinicians who accept Medicaid patients—a common problem due to the program’s low reimbursement rates—emergency rooms are often the only practical option for low-income people. Policies that make emergency room visits more expensive are likely to simply discourage people from seeking necessary care.
Price and Verma also suggest states explore charging Medicaid beneficiaries premiums. Such measures ignore the underlying reality that Medicaid serves the deeply poor, who cannot sustain these costs by definition. Still, the suggestion is familiar to Verma—under her leadership as a health policy adviser to then-Governor Mike Pence, Indiana introduced monthly premiums in 2015. Failure to pay them was grounds for losing coverage, or having less access to vital health care services.
This newfound flexibility would also make it possible for states to enact damaging policies that they have been requesting for years. Arizona, Indiana, Kentucky, Montana, and Arkansas have all previously requested permission from the federal government to impose work requirements on Medicaid, which would deny people access to the program unless they are employed.
Arizona is also pursuing a five-year cap on Medicaid benefits. Under the plan, an individual must either be working full time or be receiving disability benefits from the Supplemental Security Income (SSI) or Social Security Disability program in order to keep Medicaid benefits past the five-year cap.
Both work requirements and time limits are likely to disproportionately impact people with disabilities. Even though the time limit proposals provide exemptions for people who are receiving benefits through SSI, many disabled adults qualify for Medicaid on the basis of their income—not their disability status with the Social Security Administration. That’s because many disabled people are unable to navigate the Social Security Administration’s complex bureaucracy or, particularly among people with psychiatric disabilities, may not be fully aware of their own disability. As of 2009, 1 in 5 adults eligible for Medicaid on a basis other than disability (2.3 million people) and 1 in 10 children eligible on a basis other than disability or child welfare assistance (about 3 million children) had a mental health diagnosis.
As for work requirements, people with disabilities are more likely than other Medicaid recipients to be unemployed. These measures would place them at risk of losing the health care coverage that would help them enter or return to the workforce. Indeed, where Medicaid has been expanded, research has shown that participation in the workforce for disabled adults has increased.
Weakening Protections Against Institutionalization
In their letter, Price and Verma also indicate an intent to weaken vital Obama administration protections for seniors and people with disabilities.
In 2014, the Obama administration issued a rule designed to protect seniors and people with disabilities who receive home and community based services. The Home and Community Based Settings Rule helps ensure that when states fund community services for people with disabilities, they do so in a manner that promotes integration instead of replicating the isolation and control of institutional environments.
The Settings rule requires every state to ensure that those receiving community supports have the right to do basic things like invite visitors into their own home, choose when they eat or what they do during the day, have legally enforceable rights under a lease, and possess options as to where to live other than group homes and other ‘disability-specific settings.’ States have until 2019 to comply with the Settings rule, and a broad range of flexibility to implement it in a way that best meets the needs of their residents.
The rule is designed to protect individual liberty, so that Americans will not lose control over their most basic choices by virtue of old age or disability. Prior to the Settings rule, states were moving to fund community-based services on the grounds of old institutions or by organizing segregated villages “clustering” adults with intellectual disabilities all in one place, limiting contact with the broader society. The Obama administration rightly recognized that these “gated communities” grouping people with disabilities together to get services were institutions by another name, so it limited states’ ability to fund them with scarce community services dollars.
But Price and Verma intend to move the implementation date from 2019 to an unspecified period in the future. Beyond that, their letter also calls for rolling back federal oversight, placing individuals with disabilities at greater risk of warehousing by state governments that are too often willing to defer to service providers about the level of rights their disabled residents should be afforded.
Elsewhere in the letter, Price and Verma express interest in revisiting 2016 Obama administration regulations governing how and under what circumstances states can contract out the operation of their Medicaid programs to private insurance companies, while fast tracking further state requests for “flexibility” in Medicaid.
Advocates at the state level must seek to organize in order to stop the worst of these ill-advised “flexibility” requests that are emerging from state legislatures and state Medicaid agencies. And governors in both parties must be told in no uncertain terms that taking advantage of the Trump administration’s offer to allow the gutting of Medicaid will not be viewed kindly by their voters.
Though this administration fails to recognize it, the rights of people with disabilities deserve federal protection. Just as states frequently fail to protect the rights of racial and ethnic minorities, women, and the LGBTQ community (all constituencies who are also under attack by the Trump administration), so too are state governments frequently willing to compromise the rights of disabled Americans for the sake of cost, convenience, or prejudice.
We can’t afford to be flexible when it comes to freedom and basic access to health care for every American.