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?
When you reach the difficult decision to place your son or daughter with a disability in a group home, it is good to know what services will actually be lost when they go in. Now, there is no problem most likely if the home provides good services while he or she is there, and keeps them there. But if there’s services you are used to getting at home and they don’t provide them at the group home, there is no way to get them aside from you paying for them, and if they are discharged from the group home, other services he or she used to get as a minor, in your home, may be lost, not to come back just because they are discharged.
Here is what has happened to us, so far.
- Chris had wonderful health services in his group home. We were totally satisfied with that.
- While he was in his group home, he lost his connection with “FRS,” our county’s financial assistance for things such as camps, activities that need to be paid for, and equipment. The group home covered his food, shelter, and things like that but did not cover hundreds of dollars for things such as Saturday camp that he had had paid for by FRS for many years. Last year, while he was in the group home, we (actually his grandma) had to pay for it.
- We fully expected him to be back in FRS when he was discharged by the group home (via their choice, he was not appropriate for the home, they said). So we requested FRS to pay for his Saturday camp this year, and they said no, that he was OFF the service even though he is now out of the group home. By him being placed in the group home, he lost all rights to ever be on that list without starting at the bottom of the list again. NO ONE TOLD US THIS.
- He has a year and a half wait for services, but only is eligible anyway until he is 22 years old (I think at the end of his 21st year, so after November 20, 2012 he’ll have to no services anyway). He will be 19 in a few weeks but has at least an 18 month wait for services.
- Our understanding was that after he was discharged from the group home, without an appropriate new home to go into (where services are provided for autism and deafness and there are special procedures in place to deal with his screaming and insomnia) that he would be placed at the top of the list for an I/O Waiver to provide services for him in his own home. This was also the group home’s understanding, and they even advised us to go ahead and tell the county that he was being discharged as that should be an impetus for the I/O Waiver for care to be received very quickly.
- After he was discharged we found out that that is not true, that his being discharged has no bearing on the list, and it could be 20 years before his place on the list is called. This means a very long wait for transportation assistance, assistance with adult employment, additional care in the home, etc.
- I now am fearing he may have lost his place in the adult services list. I don’t know — I have done an email to check. But I haven’t received a newsletter from them in several months, and if he lost his place on there with going into the group home, he will have no workshop services when he gets out of school at 22.
I’m just posting this so that others ask all the questions they need, before placing their loved one in a group home. I’m not saying not to place them – Chris’s health has improved greatly after his year in the group home and he has been on a good routine — they helped him a lot. I just did not know he would lose his place on the lists with his placement, and am not totally sure I would have done it that way if I would have known.
Just another challenge in the walk we walk, as parents of children with challenges.
2010 note – Chris got into the FRS again quickly, as well as the adult residency list. Also, FRS serves throughout their life, not just 22. We are, however, still waiting on the I/O waiver. Just wanted to be accurate (12/29/2010).
Just cutting and pasting and running on with my day—-
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.