Navigating government services is difficult enough when you’re not pressed for your next meal or a growing stack of bills. The story of this father’s love and devotion to his son, who is afflicted with Duchenne muscular dystrophy captures the struggles of so many of those who fall through the cracks.
The story appeared in today’s Albany Times Union: Lonely search for help leads man to Capitol
Father who cares for ill son on scant government benefits makes appeal
DUANESBURG — Shawn Zielinski is on a mission to make some noise.
That’s why he’s not too proud to rummage for spent beer bottles and cans. And on Thursday he borrowed gas money from a friend — all to drive to the state Capitol to let people know why he’s at the end of his rope.
The 38-year-old Duanesburg resident is in a perpetual Catch-22. He is the full-time caregiver for his 14-year-old son, Tylar, who has Duchenne muscular dystrophy, a genetic disorder that slowly weakens the sufferer’s muscles. It is fatal. He was diagnosed when he was 5.
Thursday was Tylar’s birthday.
For staying at home to care for him, “the system” provides Shawn Zielinski less than $1,000 monthly to live on — including a meager $10 food stamp allowance. And to make matters worse, any increase he gets in one benefit or service results in a decrease in the other.
Zielinski was at the Capitol hoping to talk to state lawmakers about Tylar’s condition and how easy it is to get lost in the web of health care and social services institutions when caring for a seriously ill child.
Tylar, meanwhile, can speak for himself. For the last two years, he has been a New York State Goodwill Ambassador for the Muscular Dystrophy Association. He said his goal is to one day become a National Goodwill Ambassador and to meet Jerry Lewis, the host of the annual Labor Day MDA Telethon.
Last Thursday, he sat in the shade while his father quietly chatted with passersby.
The Zielinskis didn’t get to speak to any legislators last week. The Assembly and Senate were on vacation. But he was trying to get back today.
“There will be a lot of people there, and maybe I can make some noise about this while I still have my son,” he said.
Shawn Zielinski said it’s tough to get ahead when you’re at the mercy of “the system.” For example, he said he was recently awarded an additional $40 a week in child support from Tylar’s mother. As a result, he received a $40 a week decrease in Social Security benefits, and a $60 per month cut to his food stamps allowance. Those are deep cuts for a man whose adjusted gross income was less than $10,000 last year.
“I get by on $900 a month,” he said. “After I pay my bills, that leaves $10.”
His bills include one luxury item, cable television. Tylar’s physical limitations make his hobbies, which include video games and drawing, difficult. So television is a welcome diversion.
The father also cares for Tylar at home full-time. It is hard work.
“I have to pick him up every day and carry him through a 26-inch door frame,” said Zielinski, a lean man with bulging muscles. Picking up his growing son every day has taken its toll on his back, which is frequently aching.
Lawmakers said they are sympathetic, and have offered to help. Assemblywoman Amy Paulin, the chairwoman of the Task Force on People with Disabilities, said her office frequently handles calls from people in similar situations. She said that although Zielinski’s problems are with federal, and not state-run programs, state lawmakers still need to step in to make the entire system more manageable for families who care for sick relatives.
“There really should be a single point of entry” into the health care system, said Paulin, D-Scarsdale. She said she’s willing to speak to Zielinski to see if she can help sort out any of his specific problems.
It may have to be over the phone, though, rather than in person. As of Monday night, Zielinski’s van was having problems, and he said he may not make it to Albany today.
“I’m still trying, though,” he said. “I’m doing what I can.”