ELIZABETH, NJ - Having reached a dead end in his career, Thomas Corea decided to become a stay-home dad when his son, TJ, was 18 months old. Not long after that, he and his wife, Carol, discovered TJ was on the autistic spectrum. Thomas Corea has been the family caregiver for his son, now 26, ever since.
While Thomas Corea is a very positive person – he is a musician by trade – he often found it daunting to deal with the system that is in place to provide people with disabilities and their families the supports they need.
“Unless you stand on a mountain and scream, you get nothing,” he said. “You try to keep your head above water and their head above water to keep them safe.”
According to estimates from the National Alliance for Caregiving, 65.7 million Americans serve as family caregivers for an ill relative or a relative with a disability. Per the Administration for Community Living, research indicates family caregiving takes a significant emotional, physical and financial toll. With nearly half of all caregivers over the age 50, many are vulnerable to a decline in their own health, they say. Studies show that coordinated support services can reduce caregiver depression, anxiety and stress.
To ease that stress, Thomas Corea turned to Community Access Unlimited, first for direct support services while TJ was in school, then for respite services when he turned 21. Monique St. Claire is the family’s support counselor, providing the family with 6.5 hours of respite support one day each week. St. Claire takes TJ on short trips, such as to outside events.
“TJ’s mother and father need a break because he takes a lot to handle,” St. Claire said. “I’m getting him out of the house and giving his parents respite…He gets frustrated when he doesn’t get what he wants. But I can reason with him and then he says with a sweet voice, ‘Okay.’ It’s very endearing.”
St. Claire’s support became even more important when Covid-19 hit the United States and all TJ’s other supports stopped. St. Claire is back to visiting weekly.
“He lost all his routine,” Thomas Corea said. “He lost his sense of day and night. He needs constant attention…Now that he has it back, he’s back to normal.”
Kareem Colon has an intellectual disability, epilepsy and several other health issues. He needs constant care, including with eating, personal care and behavioral assistance. His father, Benny, is his family caregiver. While Kareem was still in high school, Benny visited the school once a week to learn how to care for his son once Kareem turned 21 and graduated.
After graduation, Benny Colon first looked into a Day Care program for Kareem but quickly realized his son would not receive the care he needed.
“They told me he would have one-on-one attention,” he said. “Then when I went to sign the papers they said it would be one-to-three. That wouldn’t work.”
That is when Benny turned to CAU for assistance getting the support services to which Kareem is entitled. Andrea Stuart is the CAU support coordinator for the Colon family, helping Benny Colon identify and secure the best support services that meet the needs of both Kareem and his family, including community-based supports that also serve as respite for Benny.
“Any time I have a problem I call Andrea,” Benny Colon said. “If I need extra help, she’s there. So far it’s been 100 percent good. They know what they are doing.”
While Covid ended Stuart’s regular visits with Kareem and the Colon family, she stays in touch with Benny Colon to make sure the family is getting all the supports they need.
“Kareem is a great person,” Stuart said. “He’s very lucky to have two parents who love him and care for him and make sure he has everything he needs.”
Stuart also provides support coordination services to the Marrero family. Yahveh Marrero has an intellectual disability and other health issues. His mother, Yolanda, and sister, Yolivette, are his family caregivers, Yolanda taking care of Yahveh’s personal care and Yolivette focusing on outside services.
Stuart guides the women in securing community-based supports, such as activities for Yahveh outside the house to provide Yolanda and Yolivette Marrero with respite, in-home tutoring and music therapy, and helps them coordinate medical appointments.
“Andrea is amazing,” Yolivette said. “We call her or email her and within 24 hours she gets back to us. She’s always giving us a lot of information to get the best services Yahveh can get.”
Added Stuart, “Yahveh is great. He’s very nice and friendly. His momma and sister always make sure his needs are met. I enjoy meeting with them.”
November was National Family Caregivers month, a time to celebrate the commitment and love family caregivers show for their loved ones and the sacrifices they make. Yet CAU’s St. Claire and Stuart both think family caregivers such as Thomas Corea, Benny Colon and Yolanda and Yolivette Marrero should be celebrated every day of the year, especially for braving through the Covid pandemic.
CAU plays a major support role for thousands of family caregivers and has not abated its services during Covid. Yet the agency is facing drastic increases in expenses related to the pandemic and is asking for help, particularly on Giving Tuesday, the Tuesday after Thanksgiving. Giving Tuesday is a global movement of giving first established as a counterpoint to Black Friday and Cyber Monday.
“CAU is working hard to keep our members and staff safe during the pandemic and we continue to incur significant expenses, such as personal protection equipment,” said Bernadette Griswold. “We are asking people to consider becoming a monthly donor – 100 percent of their donations will support ongoing safety measures and program expenses as we continue to support individuals and families with special needs in New Jersey.”
Griswold said there are three ways people can support the agency: volunteering their time, advocating for CAU members, or donating directly via the agency’s website or choosing CAU as their charity of choice on Amazon Smile and eBay for Charity. To learn more, visit https://www.caunj.org/support-us/.
To learn more about CAU, visit www.caunj.org or follow the agency on Facebook, Twitter and Instagram. Learn more about supporting the agency and become a monthly donor at www.caunj.org/support-us/.