Toms River Mom seeks help with a van to accommodate the twins’ wheelchairs
TOMS RIVER, NJ – Marisa Maltese lives in a continuous Catch-22.
She hates asking for help, but the special needs of her 6-year-old twin sons, Noah and Gabriel, who suffer from spastic quadriplegic cerebral palsy, put her in a situation where she must rely on help to meet those needs. needs.
Toms River’s mother values her autonomy, but to get the help her sons need, she has to give up much of the autonomy people cherish. Above all, when she asks for help, the agencies that are supposed to be there for her sons are slow to respond, if at all.
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“Nobody is listening,” she said.
“I have been trying to contact the state for assistance with modifications to my vehicle to make it wheelchair accessible,” Maltese wrote in a GoFundMe campaign she set up asking for help. assistance with modification costs. But she couldn’t get an answer.
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“Nobody works for the state. Nobody answers you,” she said.
He was offered prices of $78,000 for a van with modifications, as the need for a wheelchair accessible van became paramount to transporting Noah and Gabriel to school, doctor’s appointments and even for family outings.
“I’m a hustler,” Maltese said. “We are doing what we have to do to get through this. For me, even asking for help is a lot.”
She just wants someone to listen to her, which was a problem before Noah and Gabriel were born. It was a birth that the Maltese said almost did not survive.
Noah and Gabriel were diagnosed with spastic quadriplegic cerebral palsy when they were born. Spastic tetraplegic cerebral palsy is the most severe form of cerebral palsy, affecting the muscles of the arms and legs as well as the torso and face. It has multiple associated conditions, and the majority of cases are caused by brain damage “before, during, or shortly after birth,” according to the Cerebral Palsy Guidance website, a reference for families of people with cerebral palsy.
Maltese, who has an eldest son, was 30 weeks pregnant with the twins and had placenta previa, a condition where the placenta covers the opening of the cervix. One Sunday, she wasn’t feeling well and called her obstetrician because she was worried about the symptoms.
“I was out of breath and feeling really anxious,” Maltese said. “I knew something was wrong,” but the obstetrician told her not to worry and that he would see her two days later at her appointment.
The next morning, Maltese said, she had to be rushed to the emergency room at the community medical center.
“I had hemorrhage all over the room,” she said. She was transferred to Monmouth Medical Center in Long Branch, and the boys were born this afternoon. They nearly died too, she said.
“They had to be resuscitated right after they were born,” Maltese said.
“Nobody wants to listen to you,” she said. “You know your body and you know when something is wrong. My babies wouldn’t be like this if someone had listened.”
Maltese said she tried to take legal action but was unable to find a lawyer willing to take on the case.
“I love my babies and they are beautiful,” she said, but Noah and Gabriel face significant challenges and will require lifelong care due to quadriplegic spastic cerebral palsy.
When they were little, it was easier to carry them around, but now the boys weigh over 40 pounds each, making it harder to continually lift and lift them from their chair like she does on a day out. typical school.
“Every day we transport our children to my vehicle where I drive them to school, I take out the wheelchairs they have in the back of my van, I assemble them and I bring them to school “, Maltese said. “When the bus drops them off at the end of the day, my husband drives them back into the house, dismantles the wheelchairs and puts them back in my car to repeat the routine the next day.”
“It’s getting a little physically difficult for me and my husband to be able to keep doing things this way,” she wrote on GoFundMe.
The search for a van was downright daunting, Maltese said.
“I’ve contacted several handicapped vehicle carriers and they pretty much all start at $78,000, which I think is awful considering you’re dealing with people with disabilities,” she said. . “Where can someone get the money to be able to drive a modified vehicle for that amount of money?”
More frustrating, she says, is that no one seems to hear what she says about the family’s plight.
“When I call for help, they ask me, how much to put on a vehicle?” she says. “They don’t listen.”
The financial situation is the biggest challenge. The rush of meeting their family’s expenses leaves little money for much else.
Increasing his income is a trap because it would make Noah and Gabriel ineligible for some of the programs and help they currently receive, including Social Security disability insurance.
“We are not allowed to own property. We are not allowed to retire,” Maltese said, referring to herself and her husband, as per rules for boys to receive SSDI. The couple are legally divorced but live together; he helps with the boys but is unable to work, she says. They do not own their home, nor are they eligible for SNAP benefits.
“The SSI won’t help you if you have anything, even if the boys have a permanent disability,” Maltese said, adding that the boys weren’t getting the maximum benefit. “Their SSI pays the rent.”
The COVID-19 pandemic has forced Maltaise to close the hair and nail salon she owns, Guys and Dolls Hair Salon on Jamaica Boulevard, which primarily serves residents of the age-restricted vacation town in Berkeley. When she was finally able to reopen, she had lost many of her customers and the recovery was slow.
But getting a modified van is a necessity, not only so she can transport the boys in their wheelchairs, but also so that she has a fold-up seat where she can change their diapers in private while they’re somewhere. Few public toilets are equipped to allow parents to change children who are not babies.
This is just the latest lesson on how difficult it is for families to get help for children with disabilities. Maltese said the obstacles she faced, particularly in her dealings with the state, were persistent and varied.
“Parents of children with disabilities really need to work for what we need for our children,” she said.
She tried to get part-time nursing help with the boys, “but they want you to have them around the clock,” Maltese said. “I don’t need it in our house when we sleep.”
Maltese tried to have a ramp built on the side of the house to make it wheelchair accessible. It came to nothing.
“They (the state) wanted three offers,” Maltese said. But contractors were slow to respond to his messages asking for estimates. “It takes a lot longer (to get answers) when the entrepreneur knows he will wait for the state to pay him.”
The van’s situation has worsened because it cannot get answers from the state. His current van has over 46,000 miles and the state will not pay for modifications if the vehicle has over 50,000.
That’s why she tries to find an already modified van and hopes someone will hear her plea for help.
“While this is the situation of no one but mine and my family, financially there is no way we can afford such an expensive necessity,” Maltese said. “I work really hard to take care of my family, so it makes me feel uncomfortable to ask for help, but at this point I have to do what I have to do so I can help my boys trying to live. as much as a normal life as I can.”
In addition to the GoFundMe, a fundraiser has been set up for May Day at the salon, 730 Jamaica Blvd. There will be food prepared by Zi Marie’s and music by The Midnights. Donations of $50 are requested; call 732-281-8907 or 732-684-8912 for tickets.
GoFundMe is a promotional partner of Patch.
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