An unimaginable dilemma: relinquish parental rights to get your child needed help

LOUISVILLE, Ky. (WAVE) - The happiest day of their lives unfolded in a couple of seconds when Andrew took his first steps.

“We were told from birth that Andrew would never walk,” Andrew’s father Jeremy Haydon said. “Never stand on his own. Never do anything. Years and years of tortuous physical therapy, muscle training, strength training, he walked and that was a beautiful moment for us and we thought there is hope for him.”

The lowest point happened years later when a Louisville doctor stepped out in the hall and made a call to an out-of-state facility.

“I’m quoting him at this point,” Haydon said. “He said, ‘We have a Tasmanian devil on our hands and we’re not equipped to handle the situation, can we please send a referral.’”

Jeremy Haydon’s son, Andrew, isn’t the Tasmanian devil. He has a myriad of severe health conditions after a stroke at birth.

“He’s autistic,” Haydon said. “He’s non-verbal. Cerebral Palsy.”

After Andrew was born, Jeremy’s mother quit her job to help care for him. His wife and grandparents are on the support team too.

“This bed enables us to put him in, zip him up, so he can’t get out and hurt himself,” Haydon said while explaining the special in-home equipment he has for Andrew. “That’s kind of a two-way system where I can see him, hear him, watch him. I can also communicate with him, because one thing he does not want is other people in here with him.”

But Andrew isn’t in his room anymore.

“Things are going downhill for us, and we are consistently reaching out for help that we are just not able to get,” Haydon said.

From Medicaid to waivers, Andrew was approved for every kind of specialty care you can get in Kentucky. But they can’t get any specialty care in Kentucky, so Andrew is at Cincinnati Children’s Hospital now.

“He has approval for everything,” Haydon said. “But we’re not able to access many of those resources because it needs to be contracted to a third-party company, and these third-party companies either say they can’t support Andrew’s needs because of his behavioral challenges, or they don’t have anybody. They blame it on staffing, blame it on pay, hourly pay, no one will do it for that amount of money.”

He desperately reached out to everyone he could think of, all the way to the Governor’s office, and got a call back from the autism council.

“Told me Kentucky is a way under-resourced state for caring for children with special needs,” Haydon said, recounting the conversation. “And he said it’s not uncommon for parents to have to sign their children over to the state, put them in the state’s care, in order to get them the care they need.”

“So the answer to your inquiries was you need to sign your child over to the state?” I asked.

“Correct,” Haydon said.

“Do you view that as outrageous or did you actually consider it?” I asked.

“For a split second, I have considered it,” Haydon said. “I have considered it because it’s my only option at this point, because Andrew needs the help and I can’t provide it. But then I start doing research and connecting with different organizations and talking with other parents and I find that this is a very common thing for parents in Kentucky, that they often times have to sign their children over and put them in the state’s care in order to get help.”

That sounds unbelievable. I’ve covered child welfare issues for decades in Kentucky and never heard of having to sign over your parental rights to get the help you need.

So I ran this case by Kentucky Youth Advocates, and they told me they’re working other cases right now just like this one.

“The level of need has increased while the level of services has decreased,” Kentucky Youth Advocates Executive Director Dr. Terry Brooks said. “And you put the two together and what we’re approaching is this emerging crisis. That is a decision that no mom, or dad, or grandpa or grandma should ever have to make. You should never have to relinquish your kid in order to help your kid, as long as you’re doing the right thing.”

That’s the perplexing paradox here. Bad parents who lose their children to the state get their kids’ needs met. But good parents going through the proper protocol can’t get the help they need.

“So in many ways, you’re being punished for doing the right thing,” Brooks said. “The irony in the case you’re talking about is had there been maltreatment or abuse or neglect, he would’ve already lost custody, so it’s as if that family is being punished for trying to deliver to that little boy.”

A few days after that interview, Brooks, who was already scheduled to testify before the state’s Child Welfare Committee, brought up the issue.

“We’re looking at three parallel cases for members of the General Assembly, and there’s also a Louisville media outlet looking at a fourth case, and they’re all identical,” Brooks said at the Frankfort hearing. “For some reason, what the parents face is to get the medical help they need, the only achievable way to do that is to give up custody.”

Meanwhile, Jeremy Haydon and members of his family have been making several trips per week, for months, to Cincinnati Children’s Hospital to see Andrew.

“We’ve been advised to think about moving to another state,” Haydon said. “Moving to Ohio, Indiana, because those states are very well resourced for special needs children. We’ve lost all hope. We’ve lost all hope. We’ve lost all faith.”

I reached out to the Kentucky Cabinet for Health and Family Services one week ago for comment on this dilemma. I have not received any answers.

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