'I Don't Want to Lose My Kids,' Widowed Dad Says

"This is how my life goes: One step forward, 10 steps back," a visibly frustrated Richard L'Ecuyer said. 

The Lake Parsippany father of three special-needs children is filled with worry about his disabled children's well-being, his own health and the family's existence.

Most recently, L'Ecuyer, 49, wondered how he would overcome obstacles in his fight to obtain legal guardianship of his now-18-year-old son, David, who is severely autistic, very limited in his ability to communicate and unable to care for himself.

That issue seems to be moving toward resolution, he said. 

"I got some help from a lawyer, and it looks like the guardianship will go through soon," he said. "That's a relief. But there are so many other problems, and I don't know what I am going to do.

"Things are going from worse to worst."

Primary among L'Ecuyer's worries is how he can possibly take care of his health without health insurance.

"I need to be healthy to take care of my kids," he said, noting that the COBRA insurance he receives through his late wife Pamela, who died two years ago, will run out in five months.

"Getting insurance for me would cost $2,500 a month," he said, his voice rising. "I can't afford that. I can't work—I have three kids who need me at home. The house is paid off, but they're messing around with my Social Security benefits. And David loses his [state Department of Disability Services] benefits—including the diapers he needs—once he leaves [his special-education school, the Regional Day School in Morris Township] or turns 21, whichever comes first. I can't even get a straight answer as to when his benefits run out; it could be as soon as the end of this school year.

"I may have to sell this house," he said, wiping away tears and speculating that he would have to shelter his family in a mobile home.

That family includes his mother, David, and his siblings, 11-year-old Joseph (a.k.a. J.J., who suffers from Type 1 diabetes), and Tiffany, 14, who was born with microcephaly, a genetic brain disorder.

L'Ecuyer and his wife adopted the children when they were young, saving the kids, he said, from having to be institutionalized.

The father said his children are thriving in his care, and proudly showed off the awards the couple won from the state for taking on the challenge of three disadvantaged kids. But since his wife's death, which forced him to leave his job, and the loss of her income as a geriatric nurse, he said the L'Ecuyers have struggled financially.

"I don't have a lot to live on," he said, "just $994 for my Social Security benefit and Medicaid for the kids and their benefits."

As far as the subsidies, L'Ecuyer said they are hard earned.

"We're saving the state millions, because David and Tiffany would be in a home, if not for us," he insisted. "And if things don't work out, they still could end up in an institution.

"I won't have it. These are my kids. I love them and they need me. They belong with me. But how do I do this? There's no way I can afford my health insurance." 

He added that he is working to be proactive in getting himself to a healthier place. L'Ecuyer said he has lost 16 pounds and is working to get his Type 2 diabetes under control.

The stress he is experiencing doesn't help, though, he said.

"I have a hard time sleeping at night from worrying. How do I come up with money? What happens to my kids if something happens to me? As it is, it looks like I am going to have to let our [part-time] babysitter go."

And the sitter appears to be needed sorely. David, his disability aside, is a grown man. Though his father and grandmother insist that he is a loving, nonviolent boy, he has a man's strength, which makes him difficult to control and keep safe at times. During Patch's visit to the L'Ecuyers' small home, he had a hard time sitting still in a chair and frequently emitted unintelligible vocalizations, which demonstrate the extent of his ability to communicate.

"My mother is getting older and her health isn't the best either," L'Ecuyer said. "We need the sitter's help, but I don't know how much longer we can afford her."

Another problem he faces, he said, is a lack of Internet access.

"I'm trying to do research to find some options, and without the Internet, I can't do it here. When I can get to the library, I use theirs, but you can imagine that it's tough for me to get out of the house."

L'Ecuyer said he has received assistance in the past from Mayor James Barberio's staff and from the governor's office, and he hopes to reach out to Newark Mayor Cory Booker for ideas. At this point, though, he suspects the government is tapped out when it comes to ways in which it can assist the family.

Which leaves the harried dad at a loss.

"I don't want to lose my house. I don't want to lose my kids. What do I do?"