Six-year-old Aiden Barnum, the subject of several KING 5 news reports and the inspiration for a new state law, is experiencing more fun and joy in his life because of the generosity of the Make-A-Wish Foundation.
Aiden was the victim of terrible abuse when he was just six weeks old -- abuse that could have been prevented had Washington's Child Protective Services heeded warnings that Aiden was being abused by his father.
Aiden's skull was crushed by his own father, who is currently serving a 25 year prison sentence for the assault. It left Aiden with lifelong disabilities, including brain damage, cerebral palsy, epilepsy and autism. He's also legally deaf and blind. Aiden cannot stand, walk, feed himself or talk.
But a recent gift of pieces of special needs equipment is helping Aiden to experience newfound joy. Earlier this month a KING 5 crew visited Aiden at his home and found him laughing and smiling uncontrollably as his dad bounced him in a new special needs chair. His adoptive parents said they haven't seen Aiden this happy in over a year.
"Words can't express how grateful we are for them [Make-A-Wish] coming in and doing that (for us)," said Melissa Barnum, who with her husband adopted Aiden in 2009.
"Typical kids are out running, playing, jumping. That all gives input to your body that makes you feel good. It makes you happy and that how you have fun. And so Aiden is getting to have more fun now," Barnum said.
Make-A-Wish brought Aiden a swing that can hold up to 400 pounds, a giant vibrating bean bag for sensory stimulation and the bouncing chair. The family also received a professional grade Vitamix so that anything the family eats can be prepared for Aiden. His mother showed us Aiden's pizza, Caesar salad and cake, all in separate bags, ready to eat.
Fight for services
But getting special equipment hasn't always been this easy. As an adoptive child the state of Washington's Health Care Authorityis required to pay for Aiden's medical expenses through the state's Adoption Support Program. But from day one, the family said each request turned into an all-out fight: including requests for a car seat, wheelchair, activity chair, even diapers.
A spokesperson for the Health Care Authority (HCA) said delays can happen when the family or medical providers don't submit the correct paperwork or enough information to justify the service.
"Sometimes after getting a request, we need more information to make sure we are approving the right service at the right time. We have a team of doctors and nurses, as well as an occupational therapist, who review requests, ask for more information when needed, and make decisions to ensure we are approving services that are medically necessary and cost-effective," said an HCA representative.
Barnum said the process is "ridiculous".
"When you are just trying to do the best for your child and put in an honest to goodness request, you are treated like a liar," said Barnum. "We need, need, need more information down to things that are so absurd that you reach a point where you don't understand why he just can't have it."
The Barnums said the fight for services and supplies is especially difficult to accept because another state agency – the Department of Social and Health Services – could have prevented Aiden's need for the adaptive equipment. When Aiden was just 12 days old his birth parents brought him to the hospital with a suspicious broken arm. Several medical professionals suspected abuse and the CPS social worker assigned to the case wrote the child would be in "serious and immediate harm" if sent back home.
Instead of following through on a mandatory safety plan for Aiden, the social worker sent Aiden back home with the suspected abuser and didn't follow through with any services intended to keep the baby safe. The assault that crushed Aiden's skull happened a month later.
"All of it boils down to the state didn't do their job in the first place," said Barnum. "Aiden was born perfectly healthy. And if the state, a state agency would have done their job to begin with it's very likely that none of these requests would be made of them now on his behalf."
Just how hard has the family had to fight for Aiden? When they requested a sun/rain canopy for his stroller, the request was denied. HCA said "there was no medical necessity as these are items of convenience." The agency suggested that the client should hold an umbrella for protection. The Barnums say the medication Aiden takes prohibits him from being in the sun for very long. And they note that their son cannot hold any item, including an umbrella, with purpose.
"He has no understanding of holding an umbrella in a way to protect himself from sun or wind or rain," said Barnum.
The Barnums also asked for an adjustable activity table that raises and lowers. This would allow Aiden to safely play with his toys, sit or eat with the family at any level.
The state denied it, saying Aiden could eat in his wheelchair.
"Aiden already had a stander and a wheelchair/stroller, so we needed information about why the need for equipment that is used for the same purpose. We cannot provide a service that is duplicative of another service, so there was no medical necessity established," said an HCA representative.
The request went all the way to a scheduled pre-hearing conference with a judge, state attorney and witness list. After three denials the HCA authorized the activity chair because of stairs leading to the home, which made it difficult to transport the wheelchair to and from the car.
"Aiden's condition isn't what warranted the additional equipment—the home design is what warranted it," said the HCA.
Barnum said statements like that show the state agency is not familiar with its clients. Aiden's activity chair allows him to experience some normalcy in his life, including sitting up high enough to watch his dad cook the family dinner, or being lowered to the floor level if the family is sitting on the carpet playing a game.
"I wanted the chair because it improves his quality of life. It increases his ability to interact with everyone in the family on every level," said Barnum. "It takes time and resources to file an appeal and argue with them and tell them that I'm going to have three witnesses to their three witnesses to why my son needs a chair to sit in."
And then there were the diapers. The Barnums said there was a two-year volley of correspondence with the HCA in addition to a home visit from an HCA nurse before receiving approval for bigger diapers. The smaller ones were cutting into Aiden's skin.
"Nobody should have to fight for diapers. Why would anybody lie about needing that? I can't think of a parent who would lie about needing diapers for their six year old," said Barnum.
Soon after KING 5's first story about Aiden in November, state Sen. Steve O'Ban (R-Pierce County) wrote a letter to the HCAexpressing concern about the family's difficulty in obtaining services.
"What makes Aiden's situation even more agonizing is the fact this unnecessary pain and suffering could have been prevented. The Department of Social and Health Services' failure to follow well established statutes and policies allowed this to happen," wrote Sen. O'Ban. "The Adoption Support Program is in place to assist people like the Barnum family….It is appalling to think, after all the Barnum family has been through and will go through, that they would have to fight tooth and nail to simply get basic supplies, like diapers that actually fit, to take care of their son. I strongly request and urge you to be as accommodating as possible."
The HCA Medicaid director quickly responded to the letter by saying the medical providers failed to supply necessary information.
"We can only conclude this family is not aware of the options available to them to get assistance or help when they need it," wrote MaryAnne Lindeblad of the HCA. "We don't want families to fall through the cracks, their health care needs getting lost in the act of following protocols and procedures."
Barnum said the HCA response to Sen. O'Ban is "patronizing at best."
"The insinuation that our son is falling through the cracks because we don't know what is available to us is insulting. We work very closely with a very strong team of doctors, nurses, teachers, and therapists who have all been doing these types of requests for a very long time. They were all shocked by what had to be done to explain why Aiden needed bigger diapers," said Barnum.
Aiden's Act
In February the KING 5 Investigators found more evidence of the mishandling of Aiden's case by DSHS. A request for public records showed the department did not conduct any sort of investigation, meeting, or interview with the child's social worker after Aiden's near fatal injury. Instead of learning from the incident and getting to the bottom of how the social worker fell down on the job, the agency ignored the event and promoted the social worker into a supervisory position.
This lack of accountability led to Sen. O'Ban proposing "Aiden's Act", which was signed into law by Gov. Jay Inslee in May. The law requires DSHS to conduct an internal review when a near fatality occurs and to discipline the social worker if it is found he or she violated policies or laws that could have prevented the injury.
In April the Barnums were pleasantly surprised when they received authorization for an expensive piece of special needs equipment for Aiden without a fight. In just four months, the HCA approved payment for what is called a "Rifton Stander." The $3,300 itemallows Aiden to be safely supported in a standing position which aids in digestion, organ function, musculoskeletal development as well as facilitating social interactions with his environment.
"We just got a call that said that the stander was in and when did we want to come and pick it up or have it delivered," said Barnum. "I'm very happy I have it, it makes Aiden very happy."
The HCA told KING, "We work hard to make sure Apple Health [Medicaid] clients get the services they need in a timely fashion."
