Family of Chesapeake man with brain injury struggled to find him services before his fall to death – Virginian-Pilot

CHESAPEAKE

Leslie VanCleave wishes she could erase the image from her mind.

Its the moment right after she checked the hotel bed, saw that her 25-year-old son was missing, then checked the bathroom empty then the balcony, also deserted.

She wishes she had stopped right there in the panic to find him and had not taken the next instinctive step of a mother: looking over the balcony rail to the sidewalk below.

Thats where, on April 11, her son had fallen to his death off the third-story hotel balcony in Ohio.

Now Leslie and her husband, James, are planning a Saturday memorial for a son whose short life was sweet but difficult, particularly in the years since he suffered a traumatic brain injury at the age of 14.

In a sense, his fatal fall began that Halloween night in 2006.

The family had spent more than a decade trying to piece together services for Derek. The latest effort had fallen apart, which was why they took him on vacation instead of leaving him home with caregivers.

His story is not just about a tragic, split-second accident. It also provides a long view into the world of families struggling to care for children with brain injuries.

My heart breaks for them, said Joann Mancuso, program director at the Beacon House clubhouse in Virginia Beach, which serves people with brain injuries. They did not deserve this; it was a lack of services. Every system failed them.

Among those failures, she includes her own program, which could not accept members with disabilities as severe as Dereks.

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Dereks story has themes common in the field of traumatic brain injuries: the classic symptoms of anger, poor decision-making skills and lack of impulse control that led him down dangerous paths. Caregiver help that came and went in the blink of an eye. Parents doing their best in a situation where they often felt alone dealing with around-the-clock needs.

On that night in 2006, Derek was hit by a truck while running across a street in Deep Creek. He was in a coma for two months, and his family was told, at one point, to say their goodbyes.

He pulled through, though, and then spent three months in a rehab unit in Charlottesville. When he came home, he used a wheelchair, had trouble talking and became frustrated and aggressive when he couldnt communicate or do the things he once did. Noises and certain smells would overstimulate him and cause him to lash out.

The act he often turned to: grabbing and twisting someones arm.

The VanCleaves constantly fought insurance companies and agencies for more help. Jim was in the Navy at the time, so they were covered by Tricare. When Derek was in high school, he became so unmanageable that he spent 13 weeks at Portsmouth Naval Medical Center while the system figured out what to do with him.

Psychiatric care was not the right treatment since he didnt have a mental illness. Marylin Copeland, a longtime advocate for those with brain injuries, reached out to Jim Webb, then a U.S. senator from Virginia, who helped the VanCleaves get their Tricare insurance to cover a two-year stay at a cognitive behavioral rehab center in Wisconsin.

At Lakeview NeuroRehabilitation Center in Waterford, Wis., Derek learned techniques to handle his frustration and how to function in the world. His family learned how to avoid triggers and to work with him so he wouldnt become aggressive.

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When he came home in 2010, he was much improved but still needed a lot of care, such as constant monitoring because of his impulsive behavior. An example: He got up in the middle of the night once to get something to eat, dropped a jar of jam on the floor, then started eating it, glass shards and all, even though his family ran down to offer him something else to eat.

Sometimes he would wander around outside at night. One time, he disrobed. Another time, he didnt like a smell in the family car and tried to jump out while it was moving.

While attending Grassfield High School, he received at-home services related to the Individual Education Program he qualified for because he was disabled. But like many young adults, that changed in 2014 when he graduated.

The minute he crossed the stage, those services were gone. It was all on us, Leslie said.

The family scrambled to fill the gap. They had applied for a Medicaid waiver for the developmentally disabled in 2010. At the time he was one of 600 on a waiting list. He was able to get an Elderly or Disabled with Consumer Direction waiver, but the services were not nearly as extensive.

Leslie, 48, and Jim, 51, tried to find people with the right training as caregivers, people who were willing to deal with Dereks sometimes-aggressive nature. Leslie is a nurse at Childrens Hospital of The Kings Daughters, and Jim is an administrator at a Sentara pediatric practice.

So they knew what they needed, but the low caregiver reimbursement rate of the waiver meant people were continually cycling through the job, leaving the family in the lurch.

Anyone who has promise doesnt last long, Jim said.

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The family had planned a family vacation to Ohio with their youngest son, Alexander, 14, and Leslies relatives.

About two weeks before they were to leave, they received a call from Dereks caregiver, saying Derek had grabbed her arm. She went to the emergency room because she thought it was broken.

Jim and Leslie reported the injury to police, which they hoped would spur an emergency custody order so Derek and the family could get more help. They took Derek to the ER. Someone from Chesapeake Integrated Behavioral Healthcare, the city agency that provides public behavioral health services, conducted interviews there in a visit that lasted nearly all day.

A date was set for April 12 to see whether Derek could get one of two available slots in the city for a developmentally disabled Medicaid waiver.

They were maybe going to help us after three years in crisis mode, Leslie said.

In the meantime, they were left to find caregiving help on their own. The VanCleaves discussed whether to cancel their trip once again but decided to take Derek with them.

We never get away, Jim said. We have a 14-year-old son who deserves a life. We had made reservations, which we had moved and moved and moved.

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Even on the trip there, they ran into trouble. At one point, Derek grabbed Leslies hair because he was angry about something, and they had to call the police. They laughed it off when they got back on the road, however, with Leslie saying, Its not a VanCleave vacation until the police are called.

Once they arrived at the Kalahari Resort in Sandusky, Ohio, the family set about having fun. Having Derek there meant more work for the VanCleaves, but everything went smoothly, and they enjoyed playing in the resorts water park, eating out and taking family photos.

Derek has a heightened sensitivity to noise, so the dozens of children screaming and playing in the water were sometimes difficult for him to handle, but in general he did well and seemed to enjoy the visit.

He charmed the waitress, ordering cordon bleu using a French accent.

Jim remembers thinking, as they packed up on April 11, that it had been a successful vacation. He and Alex went to get trolleys for the luggage. Leslie was packing the final few items, and Derek was sleeping on the bed.

I walked away for a minute, and he was gone, Leslie said. I think he was mad at construction workers outside and was going to kick some butt for making noise.

Everything Derek did was over the top, Jim said. He was probably going to lean over and give them the finger.

Like so many times before, Leslie conducted a quick search to find Derek.

Leslie covers her face with her hands at the memory of the moment she looked over the edge of the balcony, hoping to see nothing: He was laying there like something out of a CSI crime scene. I was going to run downstairs and pick him up and hold him.

As Jim and Alex returned with the trolleys, they heard Leslie screaming.

A 911 call alerted a dispatcher: A guy fell off the balcony. Hes not moving.

Emergency responders arrived to find Derek had suffered a head injury so severe they were unable to revive him. The Erie County Sheriffs Office investigated. Chief Deputy Jared Oliver said Tuesday they are still awaiting some medical reports, but no foul play is suspected.

The family returned to their Chesapeake neighborhood off Mount Pleasant Road the following day, racing home so their older son, Robert, who is 27, would not find out about Dereks death through the media.

It was also the day they were to find out whether Derek would get the Medicaid waiver.

In the time since then, the parents have fielded visits and calls and Facebook postings from friends, family, former caregivers and teachers of Derek, who loved music, tattoos and concerts.

They spool through a long list of what ifs.

If he had slept five more minutes, we would have been in the car coming home, Leslie said.

If Derek had had the right services, hed be here today, Jim said.

Mancuso said she hopes legislators will hear the familys story so theyll see the need for more services for people with brain injuries: Id love to say this case is unique, but it is not. You hear over and over again that people are left without resources. And its a 24-hour-a-day, seven-day-a-week job.

A Saturday memorial at their home will celebrate Dereks life.

He was the most awesome kid ever, Leslie said.

He taught us to persevere, Jim said. He taught us to fight. He redefined our sense of happiness.

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Family of Chesapeake man with brain injury struggled to find him services before his fall to death - Virginian-Pilot