In a few short weeks, Donald Trump will become our next president. As a disabled woman, I am terrified by what Trump’s presidency means for me and my community.
Throughout his campaign, Trump paid little attention to the disability community. Policies for people with disabilities were not part of his platform. Indeed, Trump’s only real mention of people with disabilities was when he mocked a disabled reporter — and then repeatedly denied having done so.
While Trump has been nearly silent on disability policy, he has been quite vocal on his intent to dismantle the health care system. His pick for secretary of the Department of Health and Human Services, Rep. Tom Price, is vocally anti-Obamacare, and favors cuts to Medicare, Medicaid, and Social Security.
And Trump’s nominee to head the Centers for Medicare and Medicaid, Seema Verma, is also an Obamacare foe. Previously, Verma worked with Gov. Mike Pence in Indiana to develop “the most far-reaching Medicaid experiment under [Obamacare] that the Obama administration has allowed.” Based on the idea that beneficiaries should be responsible for their health expenditures, Indiana’s plan requires even the state’s lowest-income residents to pay a premium. Paying even a small premium may be cost-prohibitive for some people with disabilities who are often living below the poverty line. Does inability to pay mean we lose benefits essential to our lives?
These two choices show that the Trump administration’s health policies could have devastating consequences for people with disabilities.
How Obamacare changed the lives of people with disabilities
Access to adequate health care is a longstanding problem facing the disability community. Although having a disability does not necessarily mean one is unhealthy, people with disabilities are at greater risk of experiencing poor health. I have arthrogryposis, a physical disability that affects the way my joints and muscles developed. I use a wheelchair and have limited use of my arms and legs. My disability is purely physical and has no direct bearing on my health status. Nonetheless, my ability to receive adequate and accessible health care has always been a challenge. As a child, my family had to fight to get me health insurance coverage because of my “preexisting condition.”
As an adult, my struggles have related to physical access as well as bias among health care providers. For instance, as a power wheelchair user, it is always a battle to find doctors with large enough exam rooms to accommodate me. Discrimination and bias have been equally problematic, particularly with regard to reproductive health care. Shockingly, many doctors have offered me hysterectomies based on an — incorrect — assumption I do not intend to have children.
My experiences are not unique. People with disabilities often encounter physical as well as programmatic barriers to accessing health care, such as inaccessible communications (e.g., refusal to provide sign language interpreters for deaf individuals, Braille documents for blind persons, or information in plain language for people with intellectual disabilities).
For people with disabilities who are multiply marginalized (e.g., people of color with disabilities, LGBTQ individuals with disabilities), the struggles are even greater — these people face “double discrimination” owing to their multiple identities.
Health disparities among people with disabilities are also a result of access to insufficient health insurance coverage. However, insurance-related barriers have lessened thanks to Obamacare.
Obamacare has several significant provisions for people with disabilities, many of which I personally have benefited from.
Because of Obamacare, insurance companies can no longer deny me coverage because of my preexisting condition. Although Trump says he intends to keep this provision, how he would do so raises serious concerns. Insuring people with preexisting conditions is expensive. Obamacare addressed this through its individual mandate: If both healthy and unhealthy people pay into the program, the costs will balance out.
However, by repealing Obamacare, the individual mandate will be gone, and presumably only those with the greatest health care needs would obtain insurance coverage. Trump proposes a “high risk” pool, a program specifically for people with preexisting conditions. Since these programs take on the most expensive consumers, though, they are costly. As such, the federal government would likely take on additional expenditures to cover people like me.
Obamacare includes many other important provisions, such as removing limits on health benefits, decreasing costs for people with Medicare, and requiring standards for accessible medical diagnostic equipment (e.g., scales, exam tables, mammogram equipment). I have often been prohibited from receiving certain exams and procedures because my doctor’s office lacked an accessible exam table and scale. Now, because of Obamacare, I have the right to receive quality, accessible health care services.
Medicaid expansion improved employment rates for people with disabilities
Obamacare doesn’t only have important implications for the health of people with disabilities; it also has improved employment. This is thanks to Obamacare’s Medicaid expansion, which provided additional federal funding to states that expand eligibility rules so more people qualify. A recent study found people with disabilities who live in states with Medicaid expansion are more likely to work.
Before Medicaid expansion, in many states, if you earned any income, you were no longer eligible for Medicaid. This meant that people with disabilities had to choose between getting out of bed and having a job. Medicaid expansion allows states to increase the amount of money people can earn working (the limits are still fairly low) while receiving Medicaid benefits. Hence, people with disabilities are able to have a small income and still keep their vital insurance. This is surely a win-win: People with disabilities get to work, which in turn means we get to pay taxes!
Medicaid expansion isn’t an issue for me because I live in Massachusetts, a state that has had a program similar to Obamacare for more than a decade. Nonetheless, many of my friends in other states are very worried, rightfully so, about what will happen if Medicaid expansion goes away.
Despite Obamacare’s obvious importance to people with disabilities — and millions of Americans — Trump has repeatedly said he will “repeal and replace” Obamacare. Unfortunately, this does not seem like it will be a broken promise. Just this week, Mike Pence told Republicans in Congress that Trump intends to issue an executive order repealing Obamacare on his first day in office.
Repealing Obamacare is also a priority for Republicans in Congress, who have begun actions to do so. Notably, however, no decisions regarding a replacement have been made, which could leave many uninsured and in grave danger.
To make matters worse, Medicaid and Medicare — the two main insurance programs for people with disabilities — are also on Trump and Congress’s chopping block.
Indeed, the GOP platform signals the party’s intent to make significant changes to Medicaid, declaring, “As the dominant force in the health market with regard to long-term care, births, and persons with mental illness, [Medicaid] is the next frontier of welfare reform.” Congress has begun to “zero in on” Medicaid, examining ways to cut the program, and that is terrifying for the disability community.
Although he said he wouldn’t cut Medicaid, Trump did endorse the idea of Medicaid block grants, which allow the federal government to limit federal Medicaid funds to a set amount given to the states, rather than the current federal commitment, which is more flexible. Price also likes the idea of turning Medicaid into block grants, so this concept will likely gain traction.
Changes to Medicaid and Medicare will likely have drastic consequences for the disability community. If these vital programs are cut, we will suffer “bigly.”
For instance, Medicaid is the only insurance program that covers long-term services and supports, which provide people with disabilities in-home assistance with personal care and everyday tasks. Without these services, people with disabilities will be forced to live in institutions or nursing homes.
My state has a Medicaid “buy-in” program that allows people to earn an income and still receive benefits by paying a premium. Because of this program, I am able to work as an attorney. Without this program, I would literally be stuck in bed. Unfortunately, this type of program is considered “optional,” which means it could easily be eliminated if Medicaid funding is cut. Rather than be a productive, taxpaying member of society, I would be institutionalized.
Cuts to Medicaid would also result in the unemployment of hundreds of thousands of personal care assistants and home care workers.
Price is not the only Cabinet nominee who raises concerns for me. Indeed, Trump’s selections signal that people with disabilities will have bigger barriers to employment, housing, and education. Trump’s pick for attorney general has a long history of opposing disability and civil rights.
What do we do now? We fight.
Perhaps naive, I — and many in the disability community — never expected we would be in this situation. Now that Trump has done the unimaginable by winning the election, we are left scrambling. What we anticipated to be four years of even greater access to services and rights is now quite the opposite.
As we strategize on ways to combat changes to disability policy, we must work together with other marginalized communities. While the needs may be different at times, we must unite. Now, more than ever, we cannot give up!
For more than a year, I have feared a Trump presidency. Nonetheless, I held on to a small bit of hope that he would at least nominate Cabinet members who “got” disability. As Trump continues to make nominations, it is clear that hope is lost.
Robyn Powell is a disability rights attorney, PhD candidate at Brandeis University, and freelance writer. Her work has appeared at the Establishment, the Huffington Post, Bustle, and xoJane.