SALT LAKE CITY (ABC4 News) – Approximately 11 percent of students enrolled in Utah schools have some type of disability, according to the U.S. Department of Education. Depending on the severity, the cost to raise one of these children with special needs could double compared to those without a disability.
East Carbon resident Brandi Cross-Young knows the financial struggles first-hand. Living in rural Carbon County comes with its challenges, leading Young to make the two and half hour drive up to the city for her children’s therapeutic needs. For four to five days each month, she and her three children call the Ronald McDonald House in downtown Salt Lake City ‘home.’
“The specialist care that my kids receive or that they need, there’s not those specialists in Carbon County,” said Young.
Her three youngest children were all diagnosed with various developmental, mood, and neurological disorders, all of which require regular and specialized treatment and therapy.
Young explained 17-year-old MaKinzey has bipolar disorder and depression; 12-year-old MaKiley has an intellectual disability paired with attention deficit disorder (ADD), short-term memory, and slow processing disorder; and 8-year-old Bentley has autism, attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), disruptive mood dysregulation disorder (DMDD), anxiety, and sensory processing disorder.
“It was a relief to get a diagnosis, but at the same time, it’s a big worry because you don’t know how your child is going to be. Are they going to be able to function as an adult? Are they going to be able to be a productive member of society? The worries pile up on top of the relief, so it’s a mixture of emotions,” said Young. “It is a lot of stress, a lot of anxiety, and a big emotional toll. I probably honestly spend every other night crying just because you don’t know what your outcome is for your child.”
Buddy Pohl, a special education attorney said Utah falls behind the national standard for the Individuals with Disabilities Education Act (IDEA). After he and his wife found out their child had autism, he left his job in tech to pursue a career in law. He said late or no intervention for children with special needs leads to long-term consequences.
“Eighty percent of our incarcerated population has some form of disability. If we were involved earlier, we would reduce the prison population,” he said. “If you take a low-income family that didn’t get the support, education, and intervention they needed, the children might grow up, behave inappropriately and get charged with a crime or self-medicating with illegal drugs. They end up in a much lower functioning state and they end up costing society a lot more.”
Young said her son’s elementary school is not providing the services recommended by his psychiatrist and pediatrician to be successful in the classroom.
“There’s no single point of contact where a family can go and the schools are actually very bad about early intervention. The schools are the primary resource and they are underfunded and under-intervening,” said Pohl.
Like many other families with special needs children, Young and her husband decided she would be a stay-at-home mom to give them the care and attention they need.
“I can’t work because honestly if I did, I would get fired. I get called to Bentley’s school multiple times to calm him during a meltdown or to help de-escalate a situation. So I wouldn’t be able to hold down a job,” she said. “Also, we drive up to the city monthly for appointments and we end up spending nearly a week here each time. To take that much time off work isn’t feasible for an employer.”
Additionally, the costs for special needs health care can be crippling. Pohl said providers are few and far between, leading to higher prices and less availability for appointments.
“Provides have hearts of gold. I’m not complaining about them. But they’re terribly overworked, so the waitlists to get in are phenomenal. The frequency they can see clients just due to the amount just isn’t there,” he said. “With my son, even after he was diagnosed and we were ready to go to a provider, it took us six months or more.”
Young’s insurance covers 80 percent of their medical bills and Medicaid covers the other 20 percent, but only for Makiley and Bentley. That’s not until after they meet their annual deductible of $4,000 each year. Even though her husband is the sole provider for their family, they still over-qualified for food stamps by $60.
“That’s ridiculous. Like if only they knew what we had to spend out to do these special things, but they don’t even consider that. They don’t even consider that you have special needs or that you have disabled children, they just look strictly at income and that’s it, there’s no special circumstances,” she said. “It’s also really tricky because if my husband works over the allotted amount of hours or if he gets a bonus, they’ll kick us right off of Medicaid and we won’t receive SSI.”
She said their only other option is financial assistance from the Division of Services for People with Disabilities (DSPD). But there are currently more than 3,200 hundred families on the list with a wait time of ten years.
“For most families, it’s financial ruin. The financial burden is huge because every penny you have is going to that child,” said Pohl. “The divorce rate for families with special needs children is astronomical. The burden from finances place children at risk of abuse, which is not uncommon.”
For families like Young’s, it required tremendous sacrifice.
“It would be nice to be able to buy your kids a new pair of shoes, to be able to do this, to be able to do that. But their medical and mental needs come first before anything else. It takes twice as much to raise a special needs child as it does to raise a regular child,” said Young.
According to Utah Senator Allen Christensen, approximately $3 million in new funding go to DSPS every year. But Young believes it’s not enough.
“The funding for DSPD needs to be increased even more. That would help so many more families take the stress off.”
The Youngs are now working with Pohl to get Bentley the services he needs and resources into schools for students beginning at a young age.
“Families are the ones that know the challenges best. A lot of these schools have this approach of, ‘We’re the professionals. We’re going to tell you what we’re going to do,’” he said. “But they don’t know what’s going on in the child’s life. The parents are the ones spending time with the child and they’re going to be the ones that will care for their children throughout their life.”
Young said what motivates her to be the voice for her children and other families with special needs is the progress she’s seen through the therapy and treatment they’ve received.
“I really hope that I’m opening the doors so other parents with special needs can realize…don’t be bullied. Don’t back down. If you or your doctor and you feel that your child needs services, push for them. Keep pushing, don’t give up,” she said.