autism, residency, Uncategorized

things seem to have not changed much in 6 years…

In 2010 we tried to get Chris into a medical placement to help adjust his meds, to no avail.  I posted about it .  After that in 2011 we did manage to get a waiver and group home placement (in 2012), and I’m so grateful.  I also can work for Chris there which is a blessing, as I can still spend time with him and see how he’s doing.  But we never were afforded at that time a medical adjustment placement, to see if we have the best mix of medicines possible for him.  Soon he is seeing a sleep expert, and I hope we get some answers there.  His sleep and behaviors are all over the place.

I will add that prior to that, in 2004, we did receive a med adjustment, with the urging of his psychiatrist.  He was just 13 then and had a 10-11 day stay.  He had good results after that that lasted two years.  But as an adult he did not get a med adjustment placement.

However, posting this for a friend of mine (below) who is having similar trouble placing her son, but he is only 9!!  You would think it would be easier to get help for a child than an adult!  Sharing to bring awareness and hopefully more ideas for help for her, and changes to the system….

I have a bit of a long story that people need to know about. I live in Duncan, OK. I need someone to listen and bring light to this devastating situation. My family is being failed by the Oklahoma Health Care Authority and lack of services available for children with Autism in this state. I hope that by getting the word out, some change will come and my son will be given the help he desperately needs. Some background:

My son is 8 years old. He has severe Autism and is nonverbal. He is globally developmentally delayed. He is also very aggressive. Sometimes his triggers are apparent and sometimes he just snaps. He is nearly 5 feet tall and weighs 90+ pounds. He has been aggressive since he was 2 years old. He has been getting more and more destructive the last 6 months or so. On July 14th, my fiance and I took him to Shadow Mountain in Tulsa in hopes that he would be admitted to their inpatient program because his aggressive tendencies were becoming increasingly worse. After driving all the way to Tulsa, we were told that even though they could see that he needs help, they couldn’t help him because he was “too delayed” and with him being nonverbal, he wouldn’t be able to participate in therapy. We were heartbroken but used to being told that there was no help. Services in Oklahoma are TERRIBLE for Autism, especially severe Autism.

On July 16th, my fiancé’s mother was sitting with our children when my son completely lost it. He attacked his Nana and his baby sister. They were both left with bleeding wounds from bites all over their bodies. He had also bitten a portion of his 3 year old sister’s ear completely off. Police and EMS were called. Both of my kids along with their Nana were taken to the hospital. DHS became involved. We were told that night that our kids had to be separated. They were not allowed to be under the same roof. By the time we got to the hospital, DHS had already had my daughter released to go home with her Nana. They made sure that she was gone before we could get there. Duncan Regional refused to keep my son because “he wasn’t their responsibility.” DHS made it very clear that my daughter couldn’t be in the same house as my son. The worker told my kids’ Nana that if she found out that we had been allowed to see our daughter and our son was present, she’d have our little girl taken away.

On July 17th, we took my son to OU Children’s Hospital in hopes of getting him admitted so that he could be kept safe while we looked for some kind of residential placement. He was admitted there until August 26th. He was discharged because the hospital wasn’t doing anything for him except keeping him safe. During the time of him being there, he attacked myself and the staff multiple times and had to wear arm guard restraints and socks tapped around his wrists.
He was evaluated by a licensed psychologist while at OU and she strongly recommended residential treatment to deal with his significant needs. I obtained a lawyer through the Oklahoma Disability Law Center who said that if a medical expert deemed the treatment necessary, the Oklahoma Health Care Authority would have no choice but to pay for the necessary treatment. The problem in Oklahoma is that there are ZERO residential facilities that will take cases like my son. All places either require the patient to be verbal or high functioning or have a higher IQ. My son doesn’t meet any of these requirements. The OHCA said that in order to get inpatient treatment, which would have to be out of state, outpatient treatment has to fail first.
So, my lawyer contacted every outpatient program on the list that the OHCA gave them and ONE program said they could possibly help. We set up an evaluation the day after my son was discharged from OU Children’s. The licensed counselor determined that inpatient treatment would be necessary before she could offer outpatient services due to his significant and immediate needs. This meant that outpatient treatment had indeed failed since the only program that would even attempt to treat declined.
Now the OHCA is saying that he needs to be evaluated yet again. This time by a psychiatrist. I struggle to understand why when they have the evaluations from TWO perfectly qualified medical experts as to what needs to be done and tons of documentation of his aggression, not to mention the fact my daughter will now need plastic surgery if her ear is to ever look normal again. But, we are left here to twist in the wind because of a health care system that simply doesn’t want to pay for a necessary but expensive treatment. Everytime they get a report that should satisfy the requirement for inpatient treatment, they come up with something else that “needs” to be done first. It’s as if they are waiting for someone to say that residential treatment is unnecessary so that they can ignore all of the other evidence and deny the placement.
Might I mention that the OHCA has paid for residential placement twice before. Once in 2012 for 5 months and once in 2014 for 1 month. I was not made to jump through hoops or cross a bunch of red tape. Our son was admitted the same day as his admissions appointment in 2012 and just 2 weeks after our appointment in 2014. This was at Rose Rock Academy in Oklahoma City. It is no longer in operation. It closed down in May due to budget cuts.
Meanwhile, my family has been torn apart. My daughter is having to stay with her grandmother who lives 45 minutes away because she is not safe at home with her brother here. She is physically and emotionally scarred from this ordeal and being away from her parents is making it worse. My fiance has had to take a leave of absence from his job, which we can’t afford, to stay home with our son since he is too unpredictable to be with a sitter. DHS is now denying that they ever said that our children couldn’t be under the same roof. This is a lie. I have a recording of the worker saying that they have to be separated.
This is unfair. This is a tragedy. Everyone knows what needs to be done, but when we have a health care system who doesn’t care for the actual health of people, who only cares about dollars and cents, families are failed. Our family has been failed by the system. What’s worse is, many people have no idea!
Please advocate for services for our family and for our son. Please. Something has got to change!
Thank you,
Bethany Seward”

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