Getting Chris into the placement he needs (National Deaf Academy, which will meet his psychiatric, physical, deafness, and autism needs) has proven to be quite a challenge.
(2020 – thank goodness, in 2014 they were closed for abuse per my reading)
Chris recently underwent a med change at our local hospital due to increased agitation and other situations. However, the next step necessary to complete this med change is admission into a psychiatric stabilization unit and/or a nursing facility with a psychiatric lock-down stabilization unit. The usual pattern is that the individual gets the med change, has the psychiatric stay in the middle, and then after 30 days would be admitted into a residential center to live or go home if that’s appropriate. Now, Christopher has a likely residential center, that he can be admitted to in 30 days. It’s sounds pretty good, although it’s not perfect, and doesn’t have the extra autism and deafness therapies that Florida will provide. But we believe it will provide Christopher with a structured environment with professionals to meet his physical and medical and psychological needs.
It was very hard to come to this conclusion that Chris needs to go back into residency, but with his needs it had become apparent, and with a placement available, we decided to go ahead and pursue. However, with his needing a med change, we were awaiting an intermediate stay at a psychiatric center, and one could not be found in 5 days of our hospital stay. The social workers tried endlessly to place him but due to his age (either too old or two young) or his deafness or his being non-verbal, no one would accept him. This is in all kinds of centers in probably a 200 mile radius from here.
(2020 note – this was found to not be uncommon. We tried again in 2017 (Chris had medical/neurological issues again causing him struggles with agitation, and then again with his brother in 2018, who had his own neurological/medical issues where we could not find placement. Ryan got I/O waiver almost immediately after. We have also had friends unable to get residential placement to assist in medication adjustments.
We were floored, completely floored. We also inquired about how we can get funding for him to go right now to the Florida center. There is no funding known for it, though I have not stopped looking. The center says we have to pay for it with MRDD or Mentor Health Board moneys – we check with mental health board and they say MRDD should pay – and MRDD says they don’t have the funds for that at this point – we believe we need his I/O waiver to pay for it, which may come at some distant date – 10-15-20 years from now?
(2020, again so glad he did not go to the Florida center!)
So, at this point, we are nervous about several things –
- Will he get into the ICFMR that has the opening? Will they accept him when he wasn’t able to complete the psychiatric therapy through no fault of ours? We did have a consultation with a local psychiatrist in the hospital who we believe will be following his immediate care.
- (2020 – he was not accepted into the local center, tho now I don’t recall why)
- His meds were changed in the hospital, and it can sometimes cause problems if a patient is sent home too soon after a med change. In 2004 Chris had a tardive dyskinesia-like reaction from being switched from one med to another in the hospital, going home, having these symptoms, and then not being able to be re-admitted for observation and medical care. In 2007 he also switched medicines, but much more slowly and under constant contact with a psychiatrist. However, this time they were switched more quickly in the hospital, where we were sure he would have a psychiatric placement for observation, and then they didn’t, so he has been dismissed home in the middle of the med change.
- Then, strangely enough, when we were dismissed, we were told that he actually needed to go back on the OLD meds, that he had at home. This makes us even more nervous that he could have a medical reaction from switching too much.
- We are concerned with his increased aggression being with his grandparents or us for 30 days while we await the residential placement. And even with a 5 day ER stay we are no closer to knowing what caused the increased aggression and agitation.
I want to find out why there are no facilities locally that will accept individuals like Christopher for psychiatric adjustment of meds. What do people do? I’m sure there are other individuals like Christopher and probably some that have even worse problems. How do they get services? How do they stay safe for themselves and others? Something needs to be done in society to create more havens for helping individuals with aggression due to mental health or neurological needs.
I am asking government agencies and laypeople to put their thinking caps on and come up with some additional treatment centers for autism, autism comorbidity (such as ours, autism and deafness), and other neurological and psychological problems. I had no idea that there were individuals that simply would not be treated. I knew I had the trouble in 2004 getting him readmitted for medical observation, but I really thought that was a one-time thing. With it now happening to us twice, I am appalled.
I do appreciate our local emergency room for taking Chris in and us for 5 days. I’ll never forget my “vacation” with Gayle and Chris in our little emergency room cubicle, with 2 cots and a recliner chair. We had two rolling tables and I had my computer set up on one, for work. The nurses and staff were great. We lived there for 5 days and ate, slept (a little!), laughed, and cried.
5 thoughts on “The brick wall”
My name is Veronica Hinson, and I am the Clinical Admissions Specialist at National Deaf Academy. Our Business Development Director was doing research for a presentation he will be giving in November regarding Autism and Deafness and came across your blog entry via Google, and he passed along the website to me. I am truly sorry to read about the struggles you have had getting appropriate services for your son. I just wanted to reach out and let you know that I am available to contact to see what options may be available. If you have contacted our Admissions Department recently, and I’m being intrusive or just not recognizing the circumstances, then I sincerely apologize. I just wanted to make sure you were aware of our availability to assist in any way we can or to offer guidance in procuring the appropriate funding and resources for your son. You can reach me Monday-Friday at 352-385-3018, or any time via email at firstname.lastname@example.org.
Veronica Hinson, MA, NCC
National Deaf Academy
Thank you for writing in response to my blog – I am thrilled that it is coming up on searches. I have recently been working on categorizing and tagging and cleaning up my old entries, so the blog is more organized and easier to get through. Once that happens there will be many more entries tagged for autism and/or deafness.
Yes, I have talked to you at length before about Christopher, and so has my mother in law. We are the family in Ohio that have been trying to come to Florida to have Christopher attend, and Gayle visited you a few years ago. We are still extremely interested in placement, but are at a standstill due to being unable to get funding. Gayle said she has been awaiting a return call from you for quite a while – perhaps you can see if you still have Gayle Humphries’ phone number – you have my email for sure I know and I think you have hers. We would appreciate if you have any further details on us on funding – you were going to give us more leads of people to ask here in Ohio as to any more ideas. Thanks so much for your time.