FAMILY VS. STATE
‘Fancy cage’ or compassionate restraint? A family battles authorities
The sleeping area for Justine Wadsack’s daughter, Julianna, who has developmental disabilities, has become a safety battleground between the Tucson family and state health officials.
It was the way the bed looked. More like an oversized crib, or even a cage, than a bed.
Its tall wooden slats, locks and hinged doors screamed “restraint” to state health officials who saw it in the bedroom of Julianna Wadsack, a teenager with severe disabilities.
But to Julianna’s parents, it was a safe place for their daughter to sleep, a guard against her wandering when caregivers were pre-occupied, lest the child walk into walls or, worse, collapse on the floor from a seizure.
Their battle with state authorities over the bed that Julianna’s doctors had prescribed dragged on for 21⁄2 years, burned through $100,000 in attorney fees and challenged the notion of how much – or how little – restraint is allowed when caring for individuals with developmental disabilities.
A $25,000 bed for safety
The bed that dominates Julianna’s bedroom is no ordinary sleep system for a teenager. It’s a piece of durable medical equipment, designed to provide a safe environment for people with neurodeve-
lopmental disorders and obtained through a medical prescription.
Julianna has many of those disorders: cerebral palsy, intractable epilepsy syndrome, autism and severe mental retardation. She also has various physical disabilities, including scoliosis, blindness in one eye and limited vision in the other.
Her parents, Garret and Justine Wadsack, bought the KayserBettern bed in 2012, paying $25,000 through Garret’s insurance.
It has slats on its tall sides and on top to keep Julianna, now 15, from climbing out. It has locks on the hinged doors and an extra-long mattress that fits tightly against the rails to prevent an individual from getting wedged between bedding and slats.
For four years, the respite caregivers provided by the state’s Developmental Disabilities Division put Julianna in the bed at the end of the day and pushed the lock so she wouldn’t wander if she woke up. It also was a useful way to keep her safe if a caregiver needed to step away to use the bathroom, clean the room or prepare a meal.
But that changed in October 2016.
A cascade of complaints
It was a routine visit from a coordinator with the state’s disabilities division. She stopped at the Wadsacks’ Tucson home for an annual review of Julianna’s care plan.
Justine, who was busy supervising a contractor working on the home, thought it was odd that the coordinator left Julianna’s room after about 15 minutes with little comment.
Her concern mounted a week later when a Department of Child Safety investigator showed up, responding to a complaint about child neglect.
The next evening, officials with Rise Services Inc., the caregiver agency, showed up at the house and, according to Justine, insisted their staff no longer use the bed. They said they were prohibited from touching it because it is considered a restraint under state rules — even though they’d been using the bed and its locks for four years.
One of their caregivers told the Wadsacks she felt bad for Julianna because she was being kept in a “cage.” Justine fired her on the spot, offended that she characterized Julianna’s setting as a prison.
That same evening, three Tucson police officers knocked on the door, responding to a complaint about domestic violence and a child kept in a cage.
Both police and DCS dismissed the complaints. But the problems persisted.
After a visit to the family home, local DDD administrators insisted their rules barred caregivers from using the bed.
“This is crazy time,” Garret said of the cascade of complaints and investigations. “Let’s sit down and figure this out.”
Safety versus restraint
Reaching an agreement would prove elusive.
There were more calls to DCS, more visits by child-welfare investigators — 10 in all, each finding the complaint unsubstantiated.
The Wadsacks asked the Developmental Disabilities Division to lift the prohibition on its caregivers using the bed, or at least, to modify its use. They argued DDD misinterpreted the rule on restraint and, in the process, denied both Julianna’s rights and theirs.
DDD stuck by its position, arguing the bed was banned by a rule known internally as Article 9. R6-6-902. Prohibitions
A. The following behavioral intervention techniques are prohibited:
1. The use of seclusion (locked timeout rooms).
2. The use of overcorrection.
3. The application of noxious stimuli. 4. Physical restraints, including mechanical restraints, when
used as a negative consequence to a behavior.
B. The use of behavior modifying medications is prohibited
- Division of Development Disabilities
Gregory Stewart, then the DDD program manager for the Tucson area, explained in an email to the Wadsacks that because respite caregivers are there to supervise Julianna, the bed is unnecessary.
Other DDD staffers reiterated their view that putting Julianna in the bed and locking the doors, no matter whether for sleeping or short spells, violated Article 9.
DDD would not comment for this story, citing HIPPA, the patient-privacy law. The agency’s comments are drawn from voluminous filings in what became a drawn-out appeal.
An off-limits bed
The dispute dragged on for two years. The Wadsacks filed a grievance through the state’s internal appeals process. The state responded and a hearing was eventually held. What the Wadsacks saw as a needed safety measure for their child was portrayed by state attorneys as a “fancy cage” and an unnecessary restraint.
Meanwhile, the state-funded respite caregivers continued to work at the Wadsacks’ home while the couple worked — Justine as a Realtor and Garret as a physical therapist.
All this time, the bed sat idle until either Justine or Garret, who as the child’s parents are not bound by Article 9, would return home to push the button that would lock the bed’s doors and allow Julianna to turn in for the night.
“We are now chained and shackled in our house for 2 1/2 years,” Justine said, as she looked back on the drawn-out fight. Without permission for caregivers to use the bed, the Wadsacks said it was impossible to travel or be away from the home for more than a few hours at a time.
They went through 50 caregivers in six months because Rise, the agency they were working with, would not allow its staffers to touch the bed, citing Article 9.
Least-restrictive conditions
Article 9 was created in 1988 as a response to federal requirements that disabled individuals be kept in the least-restrictive environment possible.
Gina Judy knows those regulations well. In her role with Easter Seals, she provides services for developmentally disabled individuals. Providers, by law, have to consider the least-restrictive methods to work with a client, she said.
“We have a responsibility to show the family and others less-restrictive measures,” she said.
But defining what those measures are requires judgment, said Judy, who also is chairwoman of DDD’s Advisory Council.
“Any time you use words like ‘least’ or ‘less’, it’s subjective,” she said.
Dr. Raun Melmed is a developmental-behavioral pediatrician. He said tactics such as encouraging the child to take deep breaths or other moves to calm and relax are the first response when a child is acting out or upset. This is called applied behavioral analysis in his field, and it’s taught to DDD caregivers. Restraint is a last resort.
“The spirit of the law is to say ‘Let’s prevent children from having unnecessary restraint,” he said.
But sometimes restraint is needed. Besides, restraints are used all the time.
“We use car seats,” he said. “We hold children’s hands when we cross the street.”
The KayserBetten beds, with their locking doors and tall sides, prevent children from wandering at night. If they keep a child safe, he said, such beds can be a “lifesaver.”
Parents know best
The line between “restraint” and “safety” can be difficult to define.
As the parent of an autistic child, Cynthia Macluskie took control measures that to an outsider could appear overly harsh, such as putting a lock on her young son’s door after he had slipped out at night and was found, unclothed, playing in a ravine.
“We want to be the least restrictive in what we do, but we also want to keep them alive,” she said of the dilemma parents face dealing with children with special needs.
As vice president of the Autism Society of Greater Phoenix, DDD’s Article 9 “comes up a lot,” she said.
“Families come up with solutions because they have to,” she said. “It’s easy to be judgmental when you don’t have to be there 24/7 and you (the parent) need to go to the bathroom.”
Pillows, pads, but no locks
As the state authorities weighed the Article 9 requirements in Julianna Wadsack’s situation, they concluded the locked bed was not needed to keep her safe. They suggested caregivers could let Julianna sit in the safety bed, propped up by pillows. Adding another pad to the floor outside the bed could cushion her fall if Julianna were to leave the unlocked bed, state officials suggested.
If the caregiver had to use the bathroom, Justine said they were advised the caregiver could take Julianna with them and sit her on the floor.
DDD pointed to Julianna’s specialized seat called a “Tomato chair” and her wheelchair, offering those as alternatives to confining the girl in the bed.
To the Wadsacks, this was absurd. If the locked bed is a restraint, then so is a wheelchair or a specialty chair because Julianna is strapped in them to prevent her from falling out. Julianna spends the day in her wheelchair, with three points of restraint, when she goes to a local public school, Garret said.
The oversized bed gives Julianna more freedom of movement than any of her chairs, the couple noted. But because she can stand up and walk around, keeping it unlocked risks falls.
Those falls happened more than once. On July 4, 2017, a caregiver was mopping the floor, her back to Julianna, when the girl stood, pitched backward and hit her head on a dresser, according to a DCS report Garret shared.
In another case, Julianna fell and suffered a seizure in a moment when a caregiver had turned away, her parents noted in a complaint filed with DDD.
New leaders, new plan
The appeal process gave the Wadsacksa partial victory: An administrative law judge last August found DDD’s enforcement of Article 9 was inappropriate. But a later modification to the finding still held the bed was a restraint.
Exasperated, Justine emailed the DDD director, Charlie Green, who was relatively new to the job.
He called, sounded sympathetic and, a month later, showed up at the Wadsack’s home with the division’s new medical director and representatives from the two agencies that have provided care for Julianna.
“They took one look at my house and said ‘We were told you lived in a shack’,” Justine said. “This isn’t a shack. Our home was featured in ‘Tucson Lifestyles’ magazine.”
They inspected the bed, the trendy decor in Julianna’s room with its turquoise walls and mosaic sink, and visited with Julianna. And they agreed to change Julianna’s Individual Service Plan to include use of the bed for “safe sleeping and play.”
The Wadsacks got the revised plan in early January. It ended more than 800 days of limited use of the safety bed and freed caregivers to properly clean the room, or step out of the room to take out the garbage or do the laundry.
Won the battle; the war goes on
But while the couple won their battle, the war, as they see it, is not over.
The Wadsacks want the state to reimburse them for attorney fees, something the state is fighting. They want compensation for lost wages. Justine said she had to break the lease on her real-estate office. The furniture sits under a tarp on their patio.
Their savings account is drained, their credit rating dismal.
They want compensation from Rise, saying the agency’s refusal to let caregivers touch the bed deprived Julianna and them of their rights.
They want Article 9 changed, to allow more flexibility and to clarify it does not apply if a child does not have behavioral issues.
“The average family cannot do this,” Garret said of their long-running fight. Facing off against state agencies, dealing with repeated DCS visits would intimidate many people, he said.
The legal disputes drag on. State attorneys argue their claims have no basis.
Meanwhile, Article 9 is getting an update. While DDD won’t make Green available for an interview on the broader issues surrounding the rule, the agency did confirm it is working on a new version. A draft is expected to be ready for public comment by fall.
“We want to be the least restrictive in what we do, but we also want to keep them alive. Families come up with solutions because they have to. It’s easy to be judgmental when you don’t have to be there 24/7 and you (the parent) need to go to the bathroom.”
Cynthia Macluskie, parent of an autistic child