The Waiting Game
Lawrenceville, Georgia (Senate District 5)
It’s a stormy, gray day in early June. Mateo Hasani just graduated from high school. He and his mom, Aida, sit at home. Their little beagle, Jacku (pronounced “Jake-oo”), barks eagerly and fervently at the door. The increasing barometric pressure outside is enough to give anyone a headache.
(Story continues below after slideshow.)
Mateo is a 22-year-old man with cerebral palsy, epilepsy and a significant intellectual/developmental disability (I/DD). He and his family—mom, Aida; dad, Agim; and younger brother, Frank, now a sophomore in high school—live in Lawrenceville, Georgia. Aida says that Mateo is very friendly, maybe shy, and he never complains. Even when he had to get shots when he was very little, she would cry about it more than he would.
The Hasani family is originally from Albania. They’ve been in the United States since 2002. They did not move here directly from Albania, however, as they took Mateo to Italy when he was two-years-old “to do something better for him.” They went to Treviso, Italy, because there was a center called Nostra Famiglia, Italian for "our family," that worked with children with disabilities, providing long-term therapies. Mateo benefitted from multiple modalities of physical and speech therapies while he was there. Aida compares it to a day program in the United States, but there they had doctors and nurses as full-time staff.
Back in Albania, there is a lottery for people to apply to become permanent US citizens. Mateo’s father, Agim, won the lottery, so the family decided to move here. They were happy to have the chance to come to the United States. The family are all citizens now, and they have been since 2007. Their first home was in Atlanta, where they lived for about two years. Then they moved to Lawrenceville in 2005, when they bought their house. The Hasanis chose Lawrenceville because both mom and dad work for Publix. Aida works in a nearby Publix store as a cake decorator, though she’s had other positions, including floral specialist and cashier. Her husband is a truck driver, so their proximity to the Publix warehouse nearby is especially important. Because of their ongoing difficulty securing care assistance for Mateo, one of the most challenging aspects of their lives is having to negotiate with Publix to maintain opposite schedules so they can trade off with Mateo’s care. “It’s been hard from time to time,” she says. “They want you to be available all the time. But right now, we are good how we are because we’ve both been working for Publix for a long time.” She likes working in the bakery department because it’s always morning shifts.
Mateo was born in Albania in 1997. It was a hard year in Albania; there was a lot of political unrest. He was born full term; however, the doctors said that he had ingested some fluid in the womb. While he was fine on the first day, on the second day, a cascading set of problems began, and Mateo began having trouble breathing. He was in the hospital for 10 days. When he was released, Mateo’s primary doctor said he would be fine, but another doctor disagreed and predicted that Mateo would continue to have difficulties. Aida says, “We believed what we wanted to believe, of course.” She says that Mateo was a pretty baby. Nothing appeared to be wrong with him, so it was easy to believe he was fine.
Seven months later, Mateo started having seizures. “The news to us came slow, you know, that he wasn’t like every other child.” When she thinks back, Aida came to realize that Mateo was likely having seizures long before she understood it. Mateo's seizures were tiny and imperceptible, as he would hold his breath and roll his eyes. She didn’t know what it was she was witnessing. Then, when he was 7 months, Mateo had a long seizure that lasted for several minutes. They rushed to the hospital, but he continued to be very sick. The doctors thought they were losing him. Ultimately, he survived and came home again.
Unfortunately, Mateo continued to have seizures. When he was 2-years-old, they moved to the Nostra Famiglia facility in Italy, where he received new medications and shots. The new treatments halted Mateo’s seizures for a while.
When they came here, the doctors wouldn’t continue Mateo’s medication because it had potential side effects, including blindness. His seizures returned. “We’d been fighting all these years with medications, constantly changing,” says Aida. When he was about 7, Mateo even had a VNS (Vagas Nerve Stimulator), which stopped working after just one year, even though it had to stay in his body without working for several more years until it could be surgically removed again, around the age of 13.
Doctors say Mateo will never be seizure free, but they try to keep it under control as much as they can. He has many smaller seizures every day. Recently, after returning from a trip, he did something alarming—he stopped eating. He wouldn't open his mouth to receive the soft foods he eats at all. His parents took him to the doctor to see if he was sick, where they ran several tests. Because Mateo is unable to communicate, they do not know why he did not want to eat. If the problem persists, they might need to have a gastrostomy tube installed.
Although Mateo has been through a lot of speech therapy, they have not been able to establish any sort of facilitated communication strategy for Mateo. He has a big smile, though, and will follow you around the room with his eyes at times.
Mateo went to Oakland Meadow School in Snellville, which is a school for children with various disabilities. Many of Mateo’s friends, like Benjamin, were behind him in school, so they did not graduate with him. Mateo was in a regular high school for six years. That was hard because they began each day very early, starting with the bus arriving at 6 a.m. Because Agim worked late hours, he would just stay up and go to bed after Mateo left. “That was a nightmare for us,” says Aida. As soon as they heard about Oakland Meadow, and the fact that their hours were 8:30 a.m.-4:30 p.m., Aida says they thought, “Oh God, we’re gonna do this.” Right away, she started the paperwork for his transfer. He was able to enjoy going there for his final two years of school.
The Hasanis have been waiting for a Medicaid waiver for Mateo for six years now. Aida says, “They always say it’s whoever needs the service the most. At this point, I think Mateo does too because he’s out of school.” Every time she would call previously, she was told, “Call us six months before he gets out of school.” Now, here they are with Mateo out of school. Nothing has changed.
Because Mateo does not have a waiver, he currently receives some services through the Community Care Services Program (CCSP) of Georgia. The day program they found is the only one that CCSP will cover, and Aida has just gone to visit the site this week. One thing she notes and wonders about with this program is that everyone there is much older than Mateo. One participant uses a wheelchair, but everyone else is mobile. Her primary concern is that she likes for Mateo to be able to get down into the floor in a clean environment so that he can relax and move around to different positions. That’s what he does when he’s home. He doesn’t like to feel confined to his wheelchair all day long. She says that the staff were open to helping make this happen for him. Still, she’s a little concerned because what she saw there was bare floor. At school, Mateo had mats he could hang out on, and Aida hopes that the day program will purchase something similar for him there.
When he’s at home, Mateo has a huge bed in his bedroom, which his father designed and built for him. It provides a comfortable environment for him to be able to change positions as much as he likes. He also likes hanging out in the living room with his family as they watch TV. He sometimes sits on the couch when he’s there with them.
The family are Christian. They appreciate the ability to turn to God when they need but have not found a faith community in Lawrenceville. They still return to the one they love down in Atlanta when they can. The folks there were nice to them, especially as they struggled with practicing English and trying to find the right school for Mateo. People from the church helped them a lot during that time. There’s one family in particular with whom they still keep in touch.
If given the chance to speak to a legislator, Aida would say, “Imagine if it were your child. If it were your child, what would you do?” She and her husband were just recently speaking about this with each other, and they said they feel like no one understands them unless they’ve had a family member with I/DD. She says they do everything they can to make sure Mateo is included, to make him feel like everybody else. People with I/DD should not be excluded from everything else a normal child can do. “It happened to me, but it could happen to anyone else,” she says.
Regarding the Medicaid program, Aida wants people to know that, when Mateo turned 21, a lot of his benefits stopped. Of course, they were told that he would be eligible for a waiver when he turned 22, but that hasn’t arrived. What’s supposed to happen during that gap year? For instance, nothing is paying for his diapers or other supplies. “It’s one of the worries of parents,” says Aida. “What’s happening for our kids? Mateo didn’t stop needing diapers because he turned 21.”
She doesn’t think she should have to call the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD) over and over to make the waiver happen. Maybe it’s time for everyone to raise their voices. She also wants to be clear that they are super thankful for the services they are receiving through CCSP. Aida had surgery last fall, and they never could have made it through without the nursing care they were provided to help with Mateo during that time. That said, it’s always hard to trust a stranger to come into your house and take care of your loved one, particularly when your loved one is unable to communicate on his own behalf if something goes wrong. The Hasanis were assigned their staff via an agency. Aida didn’t get to pick the person who came, although she says she has no idea how she would have gone about choosing. “I have gone through I-don’t-know-how-many nurses.” Right now, they only have two nurses, one who comes in the morning and one in the afternoon, a few hours each. Sometimes staff members are late or don’t show up, which can throw off the rest of their day. Hopefully the wait for the new day program will not be that long. In the meantime, Mateo is going to be home all day.
Aida’s family still lives in Italy, and her husband’s family is in Albania, though both sides of their family have come to visit for extended periods of time to help out with family transitions, like when Mateo’s little brother, Frank, was born. Aida shows a picture collage she made for Mateo’s graduation, which features images from his whole life. She points out one from a time when Mateo was very ill and had gotten very thin.
Aida especially wants to emphasize the shortage in respite care. “I don’t know if there are other families... We don’t have relatives here... We have to take Mateo everywhere.” Georgia Community Support & Services has given them 240 hours they can use every year. It’s the first year they’re getting this service.
Like so many parents of people with I/DD, Aida wonders what will happen to Mateo after they die. It’s always been their concern. How many places are out there for these types of adults? “We are thinking about it, but without a waiver...?” she trails off, looking out the window. “Care is about $5,000 per month. We want to start thinking about it. These are the things that are our greatest concern.”
Mateo’s brother, Frank is 7 years younger and has indicated he’d be willing to help with Mateo’s care down the line. Their situation has had a significant impact on Frank’s life. No one could take him to sports or other activities he wanted to do. Aida feels sorry sometimes that Frank didn’t get to really be a kid, but she is hopeful now that Mateo is out of high school, Frank will be able to enjoy more of his adolescence. He too has joined the family business and is working part time at Publix.
* * * * * *
A return visit on a bright Saturday in fall reveals that some things are status quo, while others have changed in Mateo’s life, neither of those exactly for the better.
In July, Mateo got really sick and needed to have surgery on his sinuses. He was in a lot of pain, so much so that he didn’t sleep for three days and three nights, having to rest with his head raised to assist with drainage. Because of the delicate nature of his healing process, Aida and Agim took turns sitting up with him, holding his hands so that he would not hit his head, as that’s one of his repetitive behaviors.
In a terrible twist of disappointment, the day program that Mateo was poised to enter didn’t work out. Down to the week before he was to start, all of a sudden, Aida’s phone calls about lining up his transportation stopped being returned. It turned out that this program was not approved for funding by CCSP, so Mateo could not go. Now, they are back to waiting for the Medicaid waiver to come through before he can go to the day program.
There is a silver lining, though. Aida says that there are indications that Mateo’s waiver is likely going to be approved soon. She says that someone told her recently his name was on a list—the good kind of list.
You can tell that Aida’s very tired from the harrowing summer they’ve had. She had to take 10 days off for Mateo’s surgery, which was all of her vacation time for the year. She didn’t even tell her family back home that it was happening because she didn’t want to worry them. Her mom kept telling people, “Aida took a vacation, but she didn’t go anywhere!” Aida laughs ruefully at the thought.
Aida still wishes that more people, especially those who are responsible for making decisions about the resources that impact her family’s life, would have the opportunity to really see what their lives are like. “Nobody believes it until they have it on their own skin.”
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey