LINCOLN, (Neb.) In Nebraska an estimated 3,400 children are in the foster care system. According to the Nebraska Department of Health and Human Services, nearly 400 of them are waiting to get adopted and most of them have special needs. The Johnson family adopted three of those children.
Lisa and Jamey Johnson’s home is filled with smiles. Zach, Jayvion, Jazmyn have been a part of their family for a few years now. Their mother Lisa says it all started with her oldest daughter Lacy. “All eyes turned on her and her giggle and her smile,” said Lisa.
Ten years ago Lacy died in a car accident. Before she died, Lacy begged her parents to foster children with special needs. This inspired Lisa and Jamey to expand their family to nine.
While Zach, Jayvion, and Jazmyn may never be able to tell them in words what this means to them. Jamey says they tell him everything he needs to know by things as simple as a smile.
Challenges with Adopting Children with Special Needs:
Being a parent is a full-time job. Jamey Johnson’s job starts around 6 a.m. with Jayvion’s trache care.
Jayvion is a spastic quadriplegic with herpes encephalitis of the brain. His little brother Zachary has a severe traumatic brain injury from his birth mother beating him. Both boys eat five times a day through their feeding tubes. And while five-year-old Jazmyn doesn’t need a tube, her mother Lisa has to feed her, change her diapers, and help her walk.
To a certain extent the Johnsons knew what they were signing up for when they adopted their children. What they weren’t prepared for was all the paperwork and appeals they would have to make to get their children what they need.
Lisa says she spent three years carrying her children up and down the stairs, waiting for a stair climber.
Occupational therapist Michelle Wiggins has spent nearly 15 years helping appeal Medicaid denials. “Unfortunately there really isn’t a solution for the equipment while they’re waiting for it to arrive. They just have to make due,” said Wiggins.
The Johnsons have won many of their appeals, but finding time to spend together as a couple is difficult. “I’d be happy just being able to sleep in,” said Jamey Johnson.
Every month DHHS provides 48 hours of respite care for Zach and Jayvion. Jazmyn does not get this care, because the department considers her too high functioning. But because Jazmyn has kleefstra syndrome which allows her to operate at the level of a 12-month-old, no daycares in her community will take her.
Head of the Division of Children and Family Services Doug Weinberg would not comment specifically on the Johnson family, but did say his department reviews adoption cases every year. “At any point in time an adoption family can come to us and ask for additional assistance or review of that agreement,” said Weinberg.
Lisa says she did this, with no luck, turning this full-time job into a job that runs 24/7. “We would do it all over again, Just wish we had more help,” said Lisa.
Last year the Johnsons got a subsidy to buy a van with a lift for their boys. This was a one-time subsidy and tagging it would cost a few thousand dollars, which the Johnson family does not have. Because of this, for the last year their van has sat in their driveway unused.