Toms River Mom Seeks Help With Van To Accommodate Twins' Wheelchairs

Toms River NJ

24 April, 2022

5:30 AM

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TOMS RIVER, NJ — Marisa Maltese lives in a continual Catch-22. She hates to ask for help, but the special needs of her 6-year-old twin sons, Noah and Gabriel, who have spastic quadriplegic cerebral palsy, put her in a place where she has to rely on assistance to meet those needs. The Toms River mother values her self-reliance, but to gain the assistance her sons need, she has to give up most of the self-reliance that people cherish. Most of all, when she does ask for help the agencies that are supposed to be there for her sons are slow to respond — if they do at all. "No one listens," she said. "I've tried to reach out to the state for help with modifications to my vehicle to make it wheelchair accessible," Maltese wrote in a GoFundMe campaign she set up to seek help with the expense of the modifications. But she hasn't been able to get a response. "Nobody's working for the state. No one's getting back to you," she said. She's been quoted prices of $78,000 for a van with modifications, because the need for a wheelchair-accessible van has become paramount to transport Noah and Gabriel to school, to their doctors' appointments and even for family outings. "I am a hustler," Maltese said. "We do what we have to do to get by. For me to even ask for help is a lot." She just wants someone to listen, which has been a problem since before Noah and Gabriel were born. It was a birth Maltese said she almost didn't survive. Noah and Gabriel were diagnosed with spastic quadriplegic cerebral palsy when they were born. Spastic quadriplegic cerebral palsy is the most severe form of cerebral palsy, affecting muscles in 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 birth, during, or shortly after," according to the website Cerebral Palsy Guidance, a reference for families of those living with cerebral palsy. Maltese, who has an older 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 concerned 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 scheduled appointment. The next morning, Maltese said, she had to be rushed to the emergency room at Community Medical Center. "I was hemorrhaging all over the bedroom," she said. She was transferred to Monmouth Medical Center in Long Branch, and the boys were born that 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 you when something isn't right. My babies would not be like this if someone had listened." Maltese said she has tried to pursue legal action but was not able to find an attorney willing to take on the case. "I love my babies and they're beautiful," she said, but Noah and Gabriel face significant challenges and will require lifetime care because of the spastic quadriplegic cerebral palsy. When they were little, transporting them was easier, but now the boys are more than 40 pounds each, which makes it more difficult to lift them in and out of their chairs continually as she does on a typical school day. "Every day we carry our children to my vehicle where I drive them to school, take out the wheelchairs that they have in the back of my van, put them together and wheel them into school," Maltese said. "When the bus drops them off at the end of the day, my husband carries them back into the house, disassembles the wheelchairs, and puts them back into my car for the routine to happen again the following day." "It's getting to be a little physically challenging for me and my husband to be able to continue to keep doing things in this way," she wrote on the GoFundMe. The search for a van has been nothing short of disheartening, Maltese said. "I've reached out to multiple mobility vehicle carriers and they pretty much all start out at $78,000, which I think is horrendous considering you're dealing with people that have disabilities," she said. "Where can anybody come up with the money to be able to drive a modified vehicle for that amount of money?" More frustrating, she said, is no one seems to hear what she says about the family's family predicament. "When I call to ask for help, they ask, how much do you have to put down on a vehicle?" she said. "They don't listen." The financial predicament is the biggest challenge. The crush of meeting their family's expenses leaves no money for much else. Increasing her income is a Catch-22, because doing so would make Noah and Gabriel ineligible for some of the programs and assistance they receive now, including Social Security Disability Insurance. "We're not allowed to own property. We're not allowed to have retirement," Maltese said, referring to herself and her husband, under the rules for the boys to receive the SSDI. The couple is legally divorced but lives together; he helps with the boys but is unable to work, she said. They do not own their home, and they don't qualify for SNAP benefits, either. "SSI won't help if you have anything, even though the boys have a permanent disability," Maltese said, adding the boys do not receive the maximum benefit. "Their SSI pays the rent." The COVID-19 pandemic forced Maltese to shut down the hair and nail salon she owns, Guys and Dolls Hair Salon on Jamaica Boulevard, which serves primarily residents in the nearby age-restricted Holiday City at Berkeley. When she was finally able to reopen, she had lost many of her clients, and the return has been slow. But getting a modified van is a necessity, not simply to be able to transport the boys in their wheelchairs, but also one that provides a fold-down seat where she can change their diapers in private when they are out somewhere. Few public restrooms are equipped for parents to change children who are not infants. It has been just the most recent lesson in how difficult it is for families to get assistance for children with disabilities. Maltese said the roadblocks she encounters, particularly in dealing with the state, have been persistent and varied. "Parents of disabled children really have to work for what we need for our kids," she said. She has tried to get part-time nursing assistance with the boys, "but they want you to have them around the clock," Maltese said. "I don't need them in our home when we're sleeping." Maltese has tried to get a ramp built onto the side of the home to make it wheelchair accessible. That has gone nowhere. "They (the state) wanted three bids," Maltese said. But contractors have been slow to respond to her messages seeking estimates. "It takes a lot longer (to get responses) when the contractor knows they will be waiting on the state to pay them." The van situation has been aggravating because she cannot get answers from the state. Her current van has more than 46,000 miles, and the state will not pay for modifications if the vehicle has more than 50,000. That is why she is trying to find an already modified van, and hoping someone hears her request for help. "Although this is no one's situation but mine and my family, financially there is no way that we can be able to afford such an expensive necessity," Maltese said. "I work very hard to take care of my family so this does make me feel uncomfortable to ask for help, but at this point I need to do what I have to do to be able to help my boys try to live as much of a normal life as I possibly can." In addition to the GoFundMe, a fundraiser has been set up for May 1 at the salon, 730 Jamaica Blvd. There will be food catered 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 Patch promotional partner. Sign up for Patch alerts and daily newsletters here, or download our app to have breaking news alerts sent right to your phone. Have a news tip? Email [email protected] Follow Toms River Patch on Facebook.