This election cycle demonstrates that people with disabilities – along with most Americans – are seeking change. Broadly, the status quo is one in which people have trouble making ends meet, worry about ISIS-sponsored terrorism, and feel generally insecure about the future. For people with disabilities, this unease is heightened by a systemic preference for institutionalization, disrespect for autonomy, and a morality that questions the value of disabled lives.
Yet it is insufficient to merely demand that change occur. In keeping with the slogan “nothing about us without us,” people with disabilities have an obligation to formulate and advocate for policies that will improve their situation. When the disability community comes together and vociferously advocates for reform, real change is possible. As such, I offer five policy proposals that I would like to see candidates for federal office support:
1. Eliminate the federal carveout that permits employers from paying people with disabilities “special” subminimum wages. The Fair Labor Standards Act makes it legal for certified employers to pay people with disabilities less than minimum wage. In Indiana alone, more than 4,000 people with disabilities toil in segregated facilities for as little as one cent per hour. Sometimes these workers do jobs that don’t exist in the real economy – removing stickers from barrels or separating nuts from bolts. Other times, these workers do factory jobs that would cost an employer $15 or more per hour if the employee did not have a disability. Regardless, the employer reaps benefits from this labor while Vocational Rehabilitation and other agencies are “off the hook” helping these individuals find meaningful employment.
I offered this policy first, as I don’t imagine it being terribly contentious. Not long ago, AbilityOne was excoriated in the press for poor outcomes and alleged fraud. Democratic presidential candidates Hillary Clinton and Bernie Sanders have expressed the need to and subminimum wage employment. Republican presidential candidate John Kasich implemented Employment First policies as Ohio’s governor, mandating that state agencies automatically assume that every person with a disability is capable of competitive, integrated employment.
2. Amend Medicaid regulations to require every state to offer a consumer-directed care option. Getting consumer-directed care was a real battle for this author and is available in Indiana under only one waiver. Indiana has adopted some ridiculous rules regarding such care. For example, individuals (on the appropriate waiver, of course) that take showers can opt for consumer-directed care, while individuals (even if served by the waiver) requiring bed baths are prohibited from self-directing care. Personal care is an intimate service, and state officials should not be deciding who comes into my home. Or yours. Thus, I am looking for federal candidates who are willing to mandate that those needing long-term care services have the opportunity to self-direct them.
Support for this proposal should come from a range of advocacy groups. The disability community would win, and that its autonomy would increase. Caregivers would benefit, as disabled employers would have more say in the wages and scheduling of caregivers, allowing for greater remuneration and flexibility. The government also saves money in that corporate agency middlemen are eliminated from the situation.
3. Reform mental health programs to increase community-based options. I am not a mental health expert, so I would want to learn from individuals with mental illness before supporting any specific federal policy. However, when a new Indianapolis-based state-operated mental health facility was recently announced, I realized such resources could probably be better spent serving people with mental illness in their own communities. Congress – and presidential candidates – have done enough fearmongering in regard to mental illness; it is time to act.
It is important to note that any reform must respect the civil rights of those with mental illness. HR 2646, the Helping Families in Mental Health Crisis Act, gained a claim when it was offered by Representative Tim Murphy. Although I appreciate his willingness to offer substantive assistance, the Act would greatly diminish the Protection and Advocacy for Individuals with Mental Illness program. The consequences jeopardize the ability of protection and advocacy systems to investigate alleged abuse and neglect in state-operated facilities. Who else will come to the aid of the institutionalized?
4. Stop making it difficult for people with disabilities to get physician-prescribed opioid pain medication. Presidential candidates seem to believe that stopping opioid abuse is a great way to help people with mental illness. The problem is that those who need it – those with chronic, severe pain, often self-identifying as people with disabilities – are losing their ability to access the needed drugs. Given new Drug Enforcement Agency regulations, many physicians are unwilling to prescribe more than a 30-day supply of opioids. The result is that people who have difficulty and pain moving are often required to travel to their physician – opioid prescriptions require a wet signature; no faxing to the pharmacy – and pharmacy at least once a month.
I might think this was a scheme concocted by the pro-euthanasia campaigners. Taking away legitimately-obtained pain medicine seriously decreases quality of life for disabled patients. There is no reason these people should be forced to suffer, nor crave the permanent end to their suffering. As such, I am looking for a candidate with nuanced opioid policies, who will create exceptions for individuals for whom pain medication is the only option for relief.
5. Improve transportation options for people with disabilities by rewarding mass-transit initiatives. As Madagascar’s King Julian said, “I like to move it, move it! You like to move it, move it!” Unless we are talking about paratransit. Am I right? Reliable transportation is the key to so many valuable experiences – transportation to and from work, cultural events, a friend’s house. Yet many people with disabilities are without transportation, let alone transportation that is reliable and safe.
While the driverless car holds great potential for people like me who lack the physical strength and stamina to drive, mass transit is a very available solution. In Indianapolis, the Indiana General Assembly recently turned down a mass-transit proposal in favor of a bus line. Buses are problematic in that wheelchair-users have to find room inside, get tied down, and, of course, pray that the driver actually lets them on the vehicle. Mass-transit is a much more universal option. The most common criticism I have heard regarding light rail systems is the cost. As such, I would like the federal government to incentivize mass-transit options by offering grants to those metropolitan areas with solid mass-transit plans.
These are my modest proposals for improving the status quo for people with disabilities in the United States. What do you think? And what are your top five ideas?
Contact: Emily Munson