Disabled make pleas for state assistance

Advocate staff photo by ARTHUR D. LAUCK -- Sabrina Smith, right, with her son Michael, 8, asks Friday for more money be added to the state budget to help the disabled.
Advocate staff photo by ARTHUR D. LAUCK -- Sabrina Smith, right, with her son Michael, 8, asks Friday for more money be added to the state budget to help the disabled.

One lived a normal life until a bullet to the back of his head during a hunting trip left him blind and partially paralyzed. Another’s disability materialized shortly after he took his first breath in the delivery room.

The common thread weaving Dylan Brown and Benjamin Sirmon together is that their families want the state’s help in caring for them. Their parents pleaded with legislators Friday to whittle down a waiting list for services provided in the home to people with disabilities.

“I’m not here to complain. I’m here to make changes. I’m not looking for pity. I’m here to open your eyes,” Hillary Sirmon told the state Senate Finance Committee. At her side was her 15-month-old son, Benjamin. A portable ventilator pumped air into his tiny lungs.

For more than four hours, committee members listened to parents, battered women, the disabled, food bank officials, students and others plead for a stake in the $25 billion state operating budget for the fiscal year that starts July 1.

The committee will amend House Bill 1, the main budget legislation, Wednesday and send it to the full Senate. The bill is before the Senate after changes made by the House. A final version must took shape within the next two weeks.

In addition to funding schools, hospitals and other general public expenses, the budget contains dollars for a variety of needs. Safe havens are funded for battered women. The state uses money to give parents of disabled children a break from roles as 24-hour caretakers. Students receive vouchers to go to private schools. The state generally also finds money every year through the state construction budget to fund projects important to legislators’ districts.

The budget initially proposed by Gov. Bobby Jindal contained cuts to domestic violence programs and senior centers. With the governor’s backing, the House unraveled those reductions.

Sharla Sossamon, of Dutchtown, asked the state Senate Finance Committee Friday to keep the funding intact.

Sossamon said she lived in an abusive marriage for two years before fleeing to Baton Rouge’s Iris Domestic Violence Center with a toddler. At the time, she was pregnant with her second child.

“I’m frustrated that often in our society, saving lives is less of a priority than a soccer field or a fishing pier,” she said.

Sossamon thanked the committee for meeting on Memorial Day weekend and asked legislators to remember the battles not fought on battlefields, referring to relationships that ignite into violence behind closed doors.

Earlier in the day, Sirmon got an opportunity to tell legislators about her son’s struggle with myotubular myopathy, a muscular disorder that greatly reduces his life expectancy.

As a physical therapist, Sirmon said she thought she understood what parents with disabled children endure. She said she truly had no idea.

Benjamin has been on a waiting list since May 2012 for the state’s assistance with expenses such as modifying the family car to make transportation easier for him.

“At the time, the wait exceeds my son’s life expectancy,” Sirmon said.

Vernesa Roy’s 11-year-old daughter, Corina, has been waiting eight years for services.

Roy, of Kaplan, said her daughter is autistic and needs constant prompting, from reminders to focus on her schoolwork to a gentle nudge to the table for supper.

“Fortunately, Corina can walk. She talks sometimes, (but) not (with) a lot of eye contact,” she said.

Roy said she could use financial assistance for therapies and a babysitter who understands autism.

Dylan Brown’s family could not make it to the State Capitol so Michelle Bass, of Baskin, told legislators his story.

Dylan was 19 when he was shot in the back of the head while duck hunting. His brain was crushed, triggering a stroke that left him paralyzed on the right side. Surgery left him blind.

Three years later, his family wants to keep him at home but struggles to care for him. Dylan has been on a waiting list for the state’s assistance since December 2011.

“Dylan would not want you to feel sorry for him. We love him and are glad to have him in our home, and he has a good attitude,” his father, Ken, wrote the committee in a letter read by Bass.

State Sen. Ed Murray, D-New Orleans, listened to the families’ concerns Friday and then posed a politically charged question.

Murray asked if Medicaid expansion would help them.

Medicaid is the health insurance program for the poor that is paid for by federal and state governments. The federal Patient Protection and Affordable Care Act, called Obamacare, would expand Medicaid to include people who previously made too much money to qualify, but not enough to afford adequate health coverage. However, Jindal has rejected the expansion. Democrats like Murray want to reverse the governor’s decision.

Kay Marcel, who represents the concerns of families with disabled relatives, seemed flummoxed at first by the question.

Marcel, of New Iberia, said the expansion might help the state Department of Health and Hospitals cope with budget cuts.

Then she considered the question further, adding that the expansion would put a Medicaid card in the hands of more children and give them access to the program’s services.

“That’s quite an array of services,” Marcel said.