by Erin Croyle and Dana Yarbrough
Are humans inherently good or evil? It’s a question nearly every philosophy or political science student has debated. And one you might answer differently if you are affected by disability.
A friend of mine was recently at a leadership academy where they posed this question. She was the only one in her class who chose evil. She works in intelligence, so I asked her if it was her job or advocating for her child who has a disability that shaped that view. She said hands down the experience with her child; because of how people treat him she has learned she cannot trust anyone.
Let’s face it, if you or someone you love has a disability, by default your guard is up. Everything seems like a battle … filing appeal after appeal for denied services; having to describe in humiliating detail all the things your child can’t do so they can receive the services they are entitled to under federal and state laws; seeing stares and hearing comments from people in stores over your child’s looks or behavior. We are told people care and they want the best for us. But is that really the case? Let’s take a look.
The healthcare battle is a prime example. Families are literally fighting for their lives right now. Proposed changes to healthcare could create panic and chaos for people with disabilities who use Medicaid as primary or secondary insurance, their families who support them, and the providers paid to provide necessary services. More than 80% of Medicaid’s budget funds health care for the disabled, elderly, and children. Many in Congress are supporting a plan that fundamentally changes Medicaid by reducing Medicaid’s budget by a projected 35% over the next two decades. Because this is such a large reduction, states would have little option but to raise taxes, pay doctors less, limit who gets coverage, cut back on services—or perhaps do all at once.
The Kaiser Family Foundation, a trusted resource for politicians and the media, reports that nationally Medicaid covers more than three in 10 nonelderly adults with disabilities. With proposed Medicaid cuts, states could face increased costs associated with rises in uncompensated care and spending in state programs. Federal funding reductions over time may lead states to consider cuts in Medicaid eligibility, benefits, and provider reimbursement. Those are significant implications for people with disabilities because while some services, like hospital care and nursing homes, are mandated under federal law and can’t be cut, advocates warn that since other services that are essential to disabled people are technically optional, they could be the first on the chopping block.
Here at the Center for Family Involvement I have distinguished, accomplished colleagues who rely on personal care attendants to assist them with transportation, communication, and other aspects of daily life that those without disabilities take for granted. My colleagues would be essentially stranded without those supports.
My own family would be severely impacted by these proposed cuts. My 7-year-old son has Down syndrome. He also has complex medical needs, which require monthly IV infusions. Medicaid serves as our secondary insurance. We could not afford these treatments without it. Before he started these infusions he was repeatedly hospitalized with pneumonia.
Americans have spoken over and over. The Kaiser Family Foundation cites that 80% of Americans (and 2/3 of Trump voters) have favorable opinions of many individual provisions in the Affordable Care Act. And in a survey conducted by the Kaiser Family Foundation in April, only 12% of U.S. adults said they wanted to see the president and Congress decrease spending for Medicaid. In fact, 40% said they preferred to increase Medicaid spending, while 47% said they wanted funding levels to be kept about the same.
We have seen people with disabilities arrested at the U.S. Capitol. Phone calls and emails to members of Congress are clogging their systems. We have shed tears explaining how terrifying these devastating cuts to healthcare funding and services could be.
The changes to the bill have been rejected multiple times since March. Even if the most recent proposed bill fails, its creators have promised it will come up again when they have to pass a new budget.
Politicians keep promising us everything will be OK; that they have their constituent’s best interests in mind. But, have they unintentionally misled us? Or as pointed out in this clip from Jimmy Kimmel, intentionally lied to us over and over again?
This feeling of betrayal isn’t just related to health care. We fought to have our children accepted in the schools and celebrated when the Individuals with Disabilities Education Act (IDEA) was passed in 1975. Under IDEA, all children are guaranteed the right to a free and appropriate public education (FAPE) in the least restrictive environment (LRE). But the interpretations of these rights vary widely from school to school.
Parents feel like they need to put armor on before they head into an IEP meeting. And why shouldn’t they? Finding a parent who has never had a single issue with a school is like finding a unicorn. It doesn’t exist. Even schools with the best intentions often don’t follow protocol.
Relationships with schools are filled with fear, mistrust, anxiety, and cynicism.
One parent told us her child’s teachers boasted about a visual schedule that was used and updated everyday. When she visited the school, the schedule was tucked behind a flag collecting dust.
Another reported she was promised her child would be in “the general ed classroom as much as possible.” The reality: the student was with her peers for lunch and encore classes.
A Charlottesville area mother described her experience enrolling her daughter into Kindergarten, “It felt like the county representative showed up to our IEP meeting and had a quota and was getting commission for every parent she convinced on using the self-contained classroom. Our daughter (who has Down syndrome) deserved at least a chance to enter kindergarten with her peers. The county rep disagreed and her argument against inclusion was over the top and insulting.”
Who hasn’t been to an IEP meeting when it’s clear part of the team has met without us?
Who gets the feeling the only time the IEP is read is when it’s being written?
Who has been told that a self-contained classroom is the best setting for their child based solely on the disability rather than the child’s abilities?
Who gets the impression that their school’s priority is to do what’s easiest and most affordable for the school rather than what is best for the student?
Even in the best communities we have a long way to go with acceptance. Accessibility issues are rampant. Homeowners and businesses let plants and clutter protrude onto sidewalks making it hard for wheelchairs to pass by. Aisles are too narrow. Doors are too hard too open. Bathrooms are located at the bottom of stairs.
Our neighbors think it’s OK to park in a disabled spot “just for a second” or justify using Grandma’s placard even though she’s staying in the car with no intention of shopping.
Recreation centers separate their patrons with disabilities from the rest of the crowd. Therapeutic rec programs have no qualms with putting kids ages 2-18 together and somehow call it “mainstreaming.”
If a child misbehaves in a store parents get the shame stare; that look that says your parenting is to blame for your child’s actions.
We get pushback for asking friends or family to not use the r-word.
We get offers of help and talk of support, but often when we actually need help … we get silence and averted eyes pretending not to notice.
Let’s face it, we hear a lot of talk and see little action; a lot of empathy in theory, but not in practice.
We hear a lot of lies. We witness a lot of ignorance. We experience betrayal because many Americans believe their number one right is putting me first.
But none of these are reasons to give up. They are reasons to fight harder.