Mother asking state to extend stipend for disabled daughter
By JOSIE ALBERTSON-GROVE
Jun. 11, 2018
TORRINGTON, Conn. (AP) — Robin Andrighetti left her white clapboard house before 9 a.m. May 29 to drive into Hartford. Her eyelids drooped — she did not get a lot of sleep over the weekend, between caring for her rambunctious 10-year-old daughter and worrying about that morning's hearing at the state Department of Children and Families.
Andrighetti was going to beg them to keep sending the monthly $2,000 checks she has come to rely on for her daughter's care.
Ten years ago, Andrighetti was single, 47, and unable to have children of her own. She longed for a child and applied to be a foster parent after her own health kept her out of the Peace Corps, she said. She wanted to make a difference for children somehow, even if she could not work in orphanages overseas.
She heard about a baby girl in the custody of the Department of Children and Families.
"I was told by DCF that nobody in the state wanted to meet this child," Andrighetti said. Her heart went out to the infant, and she went to see her at the neonatal intensive care unit at Yale New Haven Hospital. "I went down and sat with her in the rocker every day," Andrighetti said. "I just told her that I was going to take her home and love her."
The fact that the baby was deaf and had eyes clouded with glaucoma did not deter Andrighetti. She was not worried about her cerebral palsy, or her microcephaly, a disorder that meant the baby's brain was abnormally small. Andrighetti loved the baby and wanted to adopt her, even though caring for her would be challenging and expensive. She named her Zoe and adopted her in 2009.
It can be hard for the Department of Children and Families to find people willing to adopt children with complex medical needs, said Gary Kleeblatt, a department spokesman. "As part of that effort, we offer subsidies to pay for the expenses of caring for the child," he said. The department works to find families willing to adopt children without receiving a subsidy, but if a family cannot be found, according to a department policy manual, the department can offer a daily stipend.
But, Kleeblatt noted, those stipends are not supposed to function as income for a family.
In the 2018 fiscal year, the department made more than $334 million in similar payments to foster and adoptive families, almost 38 percent of the department's $884 million budget. The department sometimes makes payments to children without medical issues, ranging from $25.99 to $28.52 per day, depending on the child's age.
Andrighetti received a stipend of $47.10 per day from the department to care for Zoe. Andrighetti also received $200 per month to cover the cost of transportation to and from Zoe's many doctor's appointments, and $338 per month for day care.
These amounts were fixed in a contract between Andrighetti and the department, in what's called an adoption subsidy agreement.
The department and Andrighetti review the agreement every two years, to make sure the payments are still appropriate. Every time the agreement was renewed, Andrighetti asked for and received the additional $538 she had been receiving since 2009 — the funds designated for transportation and for day care.
Life went on for mother and daughter.
Andrighetti said she and Zoe's doctors did not expect her to live this long.
"We've surprised two doctors," Andrighetti said. "They call her a miracle child."
Zoe's vision improved and she got cochlear implants to help her hearing, but she still has trouble walking because of her cerebral palsy. She cannot speak and has developmental delays, but she started attending a school for children with special needs in 2011.
Andrighetti bought a house in April 2017 after years of renting apartments. Zoe loves to climb up and down stairs, so Andrighetti wanted her to have stairs of her own. And her daughter can be loud, so it seemed like a good idea to not share walls in an apartment building. A modest house with a little fenced-in backyard seemed perfect.
"I have our lives planned, our futures planned, on this amount of money," Andrighetti said.
In March, the department told her that the day care subsidy, the $338 she had been receiving in addition to the daily stipend and medical expenses, would no longer be granted. The department had reviewed Zoe's file, and realized she was no longer going to day care.
Zoe had stopped going to day care almost seven years ago.
On the subsidy review forms, Andrighetti said she reported to the state, over and over, that Zoe was in school full-time. Andrighetti never sent the department a receipt to show Zoe was in day care, but the stipend kept coming.
Andrighetti said she needs the additional money. She has had to use the money for Zoe's growing medical costs, she said.
Andrighetti said losing $338 from the monthly stipend will send her life into chaos. She believes she will lose her house, because she cannot afford both a mortgage payment and the cost of caring for Zoe.
Andrighetti drove to Hartford May 29 to ask the department to continue sending the money. Four department employees sat across from Andrighetti in a small beige conference room, fluorescent lights buzzing overhead. A mediator sat at the head of the table.
The department's contends that because Zoe no longer goes to day care, Andrighetti should no longer receive the day care stipend. "We also are responsible to be good stewards of public resources, and so if a family no longer needs a special additional service for some reason then we naturally will stop paying for it," wrote department spokesman Kleeblatt in a statement.
In preparing for the hearing, Andrighetti looked to other parents of adopted children with complicated medical conditions for help. From another mother, she learned that since December 2014, the department has been paying higher stipends for children with more complex health conditions, sorted into four levels, with each level getting a higher daily payment. Children adopted before the new system was implemented, including Zoe, were not evaluated for their levels of medical complexity.
Andrighetti thinks Zoe's various health conditions mean she should be getting at least $55 per day, the department-set level of payments for children with the second-highest level of medical complexity. The daily payments top out at $82, for children with the greatest medical needs.
To qualify for the higher daily rate, Andrighetti will have to present a doctor's evaluation of Zoe to the department, and will likely have to go through another hearing.
Money is tight. Andrighetti is a single mother. When she adopted Zoe, she was working full-time as a licensed nurse practitioner, but now, she only works two days per week on the third shift. She cannot work full-time because it is hard to find people who can care for Zoe, she said. She has had trouble finding work daytime work in her field, she said, and is not sure she could realistically work during the day, because she often has to pick Zoe up from school early, either to go to an appointment, or because her daughter's high energy has become aggressive.
Andrighetti started classes toward a nursing degree in 2015, hoping to get a job as a school nurse. But she had to drop out to care for Zoe during a hospitalization, she said.
She trusts few other people to care for her daughter. Andrighetti said nurses and babysitters have occasionally hit Zoe or let her fall when she was left alone with them while Andrighetti was at work — she said she knows because there is a camera in Zoe's room.
She loves to work and wishes she could work more, she said, but caring for her daughter is more important.
Andrighetti is waiting to hear the department's decision, but she cannot imagine she will continue receiving the day care subsidy.
She is trying to figure out how to ask for a higher daily stipend, to cover Zoe's growing medical costs, which she thinks will only increase as Zoe gets older. "Zoe's prognosis is guarded," she said. Doctors are not sure how long she will live.
"I'd do it all over again," Andrighetti said. "But next time, I'd think with my head instead of my heart."
Information from: Republican-American, http://www.rep-am.com