The White House was basked in blue light on April 2 to honor Autism Awareness Month. Along with the color change, President Donald Trump sent a tweet asking Americans to “Light it Up Blue” with him.
But simply shining a light on the issue doesn’t help solve the problems those with autism — or any other disability — face.
My step-brother, Alex, has Asperger’s syndrome — a relatively mild form of autism spectrum disorder. Alex has an amazing mother, my step-mother, who spent his childhood taking him to doctors to treat all of the complications that come along with having his disability.
He had life threatening allergies, physical ailments, sight troubles, social problems, developmental issues, but Alex got treatment, and now is employed, against all odds. Even with a job, Alex needs financial assistance because of the overwhelming cost of living with a disability — an estimated $1.4 million over his lifetime, according to Autism Speaks.
In his 2017 budget proposal, President Trump asked Congress to cut $15.1 billion from the Department of Health and Human Services. Proposing that the government limit funding for the agency tasked with understanding and researching autism seems like the wrong step.
Even worse? Trump has been incredibly inconsistent on his revised vision for Medicaid coverage and Social Security disability benefits — programs that offer a lifeline to those with disabilities. Over the last three months, Trump has gone from advising Medicaid funding be overhauled to saying that he will leave both programs “untouched.” As for Social Security, candidate Trump said he’d “leave it as is,” but his party has pushed for Social Security reform since a failed attempt by the Bush administration in 2005.
Although Medicaid is best known for offering health care for the poor, it also offers coverage to individuals with disabilities like autism. Currently, Medicaid is funded by the federal government with no set limits on the amount each state can receive. However, Trump’s overhaul plan would create “block grants” for each state, which creates hard funding limits.
Faced with a spending cap, some states would need to supplement the lost federal funds with their own money, or be forced to find efficiencies or cut benefits. And while cutting money from the program seems to be the most knee jerk reaction to any problem, taking away money from those who have no other option is a deadly proposition.
Every single day, my stepmother worries about complying with regulations and filing paperwork to preserve the financial assistance Alex relies on. Medicaid isn’t a perfect system, but it is his saving grace. Losing the coverage it provides would mean a dramatic change in quality of life for not only Alex, but for our family as well.
Unfortunately, the hoops to jump through have become walls to break down — and that’s the real disservice to our country, not the funding. Reform should make it easier for families to recieve benefits, not limit the money they could recieve in the first place.
Instead of promising a one-size-fits-all block grant approach, President Trump needs to go beyond token gestures to raise awareness and save those drowning by no fault of their own.
As someone who has seen the disorder up close, like so many have in our country — please President Trump, don’t forget those most in need of assistance.