FAYETTEVILLE -- Doctors told Amy Jamison-Casas that her 5-year-old son would spend his life in an institution, but Steven celebrated his 23rd birthday last month having never left home.
"It doesn't matter how good an institution is, someone who goes there leaves his family," Jamison-Casas said. "Steven has his family. He knows his sister. He has friends."
Steven has severe autism, a disorder of brain development that makes communication difficult, particularly verbal communication. His mother insisted on keeping him home but was reaching the end of her rope after the first three years. Steven couldn't be left alone for his own safety.
Jamison-Casas was a single mother of two and attending college to earn a degree in speech pathology.
"I didn't know what I was going to do," she said. "I was barely paying the rent and feeding the kids."
At that moment, she learned that after a three-year wait, she would be accepted into a state program that provides assistance to parents such as her. The program is the Arkansas Alternative Community Services Home and Community Based Medicaid Waiver. What it provides to a client is determined mainly by what the client needs, based on a state Department of Human Services assessment, said Melissa Stone, director of the state Department of Developmental Disabilities.
About 3,000 parents in Arkansas sit on that waiting list today, Stone said. The only way to move up the list is when somebody else leaves it.
"Right now, it's capped at 4,200," Stone said.
Gov. Asa Hutchinson wants to expand the program and cut the waiting list in half within three years.
"It's a major commitment I'm making as governor," Hutchinson told the Governor's Advisory Council on Medicaid Reform on March 30.
Expanding such assistance is part of his plan to introduce managed care to Medicaid spending, a plan that remains on hold while he seeks legislative support. The main proponents of a rival plan drawn up by legislators would also address the waiting list, although their plan does not set a definite goal, such as reducing the list by half in a specified amount of time.
The governor's intention to call a special session to approve his plan ran aground when legislative leaders told him they could not pass it without consideration of the other option.
His plan would hire a private company to manage the state-administered Medicaid program. The competing "Diamond Care" plan by legislators would leave Medicaid under state administration, but allow the hiring of private companies to administer some services.
The governor's plan would earmark at least $25 million a year collected through the state's 2.5 percent tax on insurance premiums, a figure that's less than the expected growth of revenue from the tax. The $25 million or more would be matched almost 3-to-1 by federal taxpayer money through the Medicaid program.
The total cost for the 4,200 people who are in the program now is about $190 million a year, according to state budget figures.
The governor said he has no intention of dropping his managed care proposal, but he has not announced any definite plans on when he will bring the matter up again. Sen. Missy Irvin, R-Mountain View, proposed an amendment to a budget bill on Wednesday to prohibit the state from using an emergency rule to implement managed care without legislative approval. The amendment failed in the Joint Budget Committee.
Helping hands
Nancy Ngugi of Fayetteville is a college graduate with a degree in applied psychology. She works full time through the waiver program, earning $10 an hour to take care of Steven.
"I had a client who didn't know how to chew her food," Ngugi said. "Everything you gave her to eat, she tried to swallow whole. You had to show her how to chew, to do it yourself and teach her."
"You should know you want to do this, not because of a paycheck," she said. "Some of these children are aggressive, and if you don't have patience, you're going to start this job and quit the same day."
It involves giving a lot of help and understanding psychology and, at the same time, requires tasks as menial as cleaning up an adult client who has soiled himself, she said.
Ngugi wakes Steven up in the morning and gets him showered, groomed and dressed for work -- a process that takes two hours. They then go to a park and have lunch before going to his job at Open Avenues, a nonprofit company in Rogers that employs workers such as Steven and contracts to do jobs with private companies. The work varies, Ngugi said. Sometimes the job is to take BBs, a shot used in air rifles, from large containers and put them in smaller packages. Steven works a two-hour shift.
"Now he has money and learns what to do with it," Jamison-Casas said.
The state operates five Human Development Centers for the developmentally disabled, and there is speculation on the effect of expanding the home-based program, said Amy Webb, spokesman for the state Department of Human Services.
The state does not expect the program to ever eliminate the need for institutions, Webb said. The human development centers provide a home to adults whose families are unable to care for them, or whose disabilities are too severe for a workable home or community-based option, she said.
Institutions offer around-the-clock supervision, something parents and other family members cannot provide at home without help, said Joey Astin of Forrest City, president of the Developmental Disabilities Providers Association. The association is a lobby of nonprofit groups that provide services to people with such conditions.
"This sort of thing can split up a marriage," Astin said. "The demands are that tough. A lot of times, the best service this waiver can provide is a bit of respite for the family involved."
Jamison-Casas agreed.
"You can go to the zoo as a family and, if the other kids want to go pet something in the petting zoo, you can let them go," she said. "You don't have to say, 'No, we can't do that.'"
Metro on 04/25/2016