OGDEN — At age 17, Andy Curry had a promising college football scholarship and life in Farmington, New Mexico, looked good for the nearly 7-foot-tall teen. But a four-wheeling adventure with friends abruptly ended when the vehicle in which he was riding fishtailed off a cliff. The accident broke his neck and left Curry a quadriplegic.
Curry did go on to college, but instead chose his academic home based on accessible bathrooms rather than competitive sports teams. He was coming of age soon after the U.S. Congress passed the Americans with Disabilities Act in 1990.
“It was the simple things, like can I make my bed? Those were the realities I was looking at while most students were considering everything else,” Curry said.
Curry earned a Bachelor’s degree in Psychology, with a minor in Counseling and Education, and eventually zeroed in on the independent living field. Now 44, he directs Roads To Independence (RTI), a nonprofit in Ogden and one of six such centers throughout Utah. RTI advocates on behalf of people with disabilities, organizes social events they can enjoy, and dispenses referrals, peer counseling, skills training and other key information.
RTI also helps match individuals to assistive technology equipment that can enable them to stay in their homes, on the job and out in the community.
“A lot of our services are there to keep people more independent so they’re using less support,” Curry said. “But the support is a safety net that can keep them from going into a nursing home or institution. And it’s a cost savings to taxpayers if they don’t have to go to those types of places.”
Curry also serves on a disability advisory committee for longtime U.S. Sen. Orrin Hatch and participated in a Senate briefing in mid-September about how assistive technology can actually reduce Medicaid spending.
At that time, Medicaid was threatened by the Graham-Cassidy bill that failed to garner sufficient Senate votes to pass later that month. If it had, Graham-Cassidy would have trimmed Obamacare’s Medicaid funding and distributed it to states in the form of block grants that would terminate after 2026.
Now Medicaid faces renewed attacks in the GOP 2018 federal budget plan and also under a tax reform bill Republicans hope to pass by year’s end. The Associated Press reported Thursday that the U.S. House of Representatives passed a $4.1 trillion budget plan with deep cuts to those social programs and it’s expected to trim about $1 trillion from Medicaid over the next 10 years.
According to U.S. Census estimates for 2016, roughly 26,422 of Weber County’s 244,403 residents have a disability.
Of that number, 77 percent are old than age 35. Of the remaining 23 percent under 35 years old, 340 are under five years old; 2,326 are ages 5 to 17; and 3,289 18 to 34. Disabilities include hearing, vision, cognitive, ambulatory, self-care and independent-living difficulties.
Curry likened the somewhat nebulous budget plans from Congress to a game of whack-a-mole: “It feels like a backdoor way to make the cuts they want. It’s been very frustrating,”
But in the midst of continuing uncertainty over what will become of the so-called safety net, Curry is sure of one thing, that “there are tons of people this would directly affect.”
Battling the odds
Misty Hearnesberger works as a receptionist for Roads to Independence. At the age of 2, she was diagnosed with Cerebral Palsy, a neurological disorder that affects body movement and muscle coordination. But more than three decades later, she has a college degree, is a licensed Social Worker, lives on her own, and gets around using either an electric or manual wheelchair along with public and private transportation.
Medicaid cuts would directly affect her, Hearnesberger said.
“I have aides that come in the morning to help me get ready for work. Without that personal attendant care (funded by Medicaid), I wouldn’t be able to go to work and offer my help in the community to others with disabilities.”
Hearnesberger loves her job, in part because she had to navigate much of that confusing territory on her own.
“Sometimes people don’t know what’s available, and I like being able to share my knowledge and make it easier for them,” Hearnesberger said. “I had to find out a lot of it the hard way. But I’m so independent to begin with, and I’m very determined.”
Jimmy Jones lives in Tremonton with this wife and three children but works in Ogdne as a tax examiner. Now 36, Jones was also 17 when a vehicle rollover accident broke his neck and rendered him a quadriplegic.
“The accident left me without the ability to use the majority of my arms and left me with no use of my hands,” Jones said. “I had to learn everything over again. I had to learn how to do simple motor functions without being able to move my fingers.”
The former farm kid used vocational rehabilitation for his first two years of college, but paid for the remainder on his own, earning a Bachelors degree in Business Finance. He uses a vehicle retrofitted with hand controls to get to and from work.
Jones said that many people don’t realize that serious disabilities also mean needing extra medical attention from time to time.
“The reason I’m on Medicaid is because it’s the only insurance that will pay for home health aids to come in and get me up and put me to bed so that I can go to work, be fully independent and maintain my quality of life,” Jones said.
In addition, his disability leaves him with a diminished immune system “to where a common cold could lead to pneumonia.” In the past, he has required hospitalization because of that.
“Medicaid eases the financial burden that can affect me with the many risks that go along with my disability,” Jones said.
As a full-time employee, Jones said he’s required to pay a monthly spend down for Medicaid benefits — usually $725 per month unless he gets an extra paycheck and then it jumps to $1,600.
But to Jones, that spend down is well worth it.
“It is a cost that I would gladly bear because of the many things that add up while having a disability,” Jones said, naming off prescriptions, home care aides, wheelchairs and replacement parts, hospitalization if necessary, and supplies that the average person doesn’t have to worry about.
“I realize that if I didn’t work, these benefits would be given to me free of charge,” Jones said. “But I like being a productive, taxpaying individual. Losing Medicaid would severely hinder my way of life as they help me to get up every day so that I can go to work. And, in my mind, I’m paying my share both as a taxpaying citizen as well as paying a monthly premium.”