The brick wall

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.

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 non-verbalness, no one would accept him. This is in all kinds of centers in probably a 200 mile radius from here.

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 monies – 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?

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Looking down the road

I know that everyone with an autistic child, whether or not they have mild autism, severe autism, or autism spectrum along with another disability such as bipolar, deafness, blindness, or something completely different, doesn’t know what they will expect as their child (children) grow older. It is almost too overwhelming to look at as everyday you are working with your children to make them the best that they can be, along with still mourning what you wish they could be.

In approximately 1996 when Chris would have been 5 or 6, our county MRDD workers stood in our kitchen as they evaluated Chris for special needs services as an elementary school child. This was heartbreaking to me anyway, just facing that Chris would be attending special needs classes and having services for someone with a disability. We didn’t even want to face that even though he’d been diagnosed with autism for 2 years.

As the workers spoke with us, they said, it is good to get your child on a waiver, or more than one, as you never know what the future will bring. They described these as one) a waiver on which he could get adult services in his own home and two) a waiver on which he would be placed in a home for special needs people as an adult. I don’t remember if he was on any other waivers.

We did sign up for these waivers, hoping we’d never need them. However, in 2008 we did have Chris go to a group home, as a 17 year old. This is more described in my other personal blog and I’m sure I will bring it up again here, as things are still unfolding in that area that we don’t know the results of.

Two lessons here, though, I would say to always sign up for the waivers when your child is young. You can always so no later. It’s never permanent either — we said no to the residency waiver 5 or so times as his name came up, from age 13 to 17. The 6th time we said yes, and he’s been in a very caring group home for a year now.

His I/O waiver listing was messed up. In 2002 I called to see where he was on the list — he WASN’T ON THE LIST. They told me he was on in 1996 and never put him on. We don’t know to this day what the six years lost would have done. Maybe he could have already had an I/O waiver and had someone in the home to help him already. We’ll never know. Now we are awaiting the I/O waiver in earnest, as he may be coming home from the group home as he is yelling too much and not sleeping.

So another lesson, in addition to signing up for the waivers early, also CALL every year or so and make sure they’re still on the list and where they are on the list.

More soon.[ad#Google Adsense]

mind-boggling

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Time: Wednesday, 3/9/2005 8:31:31 PM (#66445)
User: dori

Comments: hello – thanks for prayers and thoughts! After discussing, we decided not to do this at this time, but to really start spending some time researching facilities in this area so that we are more prepared when they call again (which they will – Chris will keep this top spot and when the next opening occurs they call us back). We just would feel more comfortable with more researching being done in the placement – 2 days just isn’t long enough to decide. I also am concerned with what I’m reading about Governor Taft cutting funding to ICFMR facilities (which is what this was) and want to learn more about how the private facilities are funded. I wanted to post a site about it, but the screen froze loading the pdf, so I’ll be back with it….

dori, very sick (ugh) and not quite up to all this today…. please continue to pray for us!

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another old copied post…. things are not good :(

User: dori

Comments: feel like the straw that broke the camel’s back just happened – my aide just called and asked if I thought Chris would hit her today how do i know… – I said I didn’t know, he’s mostly hitting himself, but that he had hit me some especially on Saturday. She said she’s not coming today and that she’s going to call her office and explain how much he’s hitting her (he did hit her a lot on Thursday – she had a sore arm from it) and whether they still want her to come back – what do you think will happen?

I told Rog if I don’t have an aide I think we will have to have him go live somewhere else. We may do it this week. I’m so depressed. I can’t do this with no help. My mom did help me yesterday but he was hitting her and pushing her and she’s only 5’4″ and about 105 pounds so she can’t take too much -she’s also 61. My MIL isn’t even coming around to watch him anymore really – she’s pretty sick right now.

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anyone familiar with north carolina?

We are again considering moving to North Carolina — I’m sure I’ve never posted it here (at least I don’t think so) as the last time we seriously considered it was 1997.
But with my husband needing to find a new job we are now thinking of it again – since there is a job move in the future anyway we’d like to consider whether to move to NC. We live in NE Ohio.

The reasons we have considered NC is that:

for one thing it is beautiful and close to the mountains and the ocean!

But another more important is that TEACCH for autism is centered down there, and though it is now up in Ohio too it started in NC and I have a feeling there may be more centralized schooling for Chris at all ages and perhaps adult centers as well — it seems I remember that there was from when we travelled and visited there in 1997.

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