Something to know if your loved one is placed in residency —


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).
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Change is hard

Upon a time of turmoil this Amy Grant song lifted me up through tears of grief yet tears of cleansing, and it is doing it again.

Words by Brown Bannister, Chris Christian, Amy Grant
From the album Never Alone

I had laid some mighty plans
Thought I held them in my hands
Then my world began to crumble all away
I tried to build it back again
I couldn’t bear to see it end
How I hurt to know You wanted it that way

[Chorus:]
And I’m so glad, glad to find the reason
That I’m happy-sad that You’ve torn it all away
And I’m so glad, though it hurts to know I’m leaving
Everything I ever thought that I would be
Once I held it in my hand
It was a kingdom made of sand
But now you’ve blown it all away
I can’t believe that I can say that I’m glad

Long before my plans were made
I know a master plan was laid
With a power that superceded my control
And if that truth could pierce my heart
I wouldn’t wander from the start
Trying desperately to make it on my own

What a timely song! I just heard it by chance on Pandora Radio (I have it set to play Amy Grant & similar artists) and I was just like, wow, that was MY song in the winter/spring of 81 when I went through some really really hard stuff —

Anyway, we’re about to go through some changes with Chris that aren’t exactly unexpected, but still hard to go through when you want to go AROUND, UNDER, BYPASS TOTALLY. I don’t know what the future brings, and things surely aren’t going as we’d planned.

Chris’s official discharge date was Oct. 1, but they gave more time after that. We saw some homes last week, which was kind of later than I think everyone planned as we had our out of town trip, and I was also ill either before or after that (can’t recall now). Then there’s been other things going on with work and others’ illness and just stuff going on that only gave us a few days to really think of what to do after we saw the homes.

We kind of liked one a lot, but probably not enough to take a chance on it. We are so burned by what happened — him being asked to leave, as merited as it may be — that it’s hard to “take a chance” on a new place.

So we made the decision that he will stay at his grandma’s & grandpa’s (paternal) most of the time at this point, with us helping a lot as well as Rog’s sister too some. We do have a pretty nice local home that doesn’t have any openings now that we may be considering as well. There is something we are awaiting that will help a lot, and it’s called I/O Waiver that will give us way more options for watching him at home/family’s. We can even get property for him then and hire caregivers so he could have his own home but we would still be in charge. Our county, however, in 2002 quoted that this could be somewhere around a 20 year wait.

What is heartbreaking is that he was on the “waiver list” for this waiver, and they lost his place, in 1996. We didn’t discover until 2002 that his place on the list had been lost, and I had no proof of his placement ON the list — could find no paperwork. Actually I want to tear my file cabinets apart AGAIN and see if I can find anything. 6 years on the list lost – maybe that would be the difference where he could have the help SOON. I had 2 huge notebooks I compiled on his autism topics back in 1997 – I can’t remember if I searched through those back in 2002 when we found this out but I will search now.

We just want him to be healthy, happy, and well taken care of. His health is SO good now — I’m a little nervous with losing all the hands-on supervision he has now and the strict routine, that especially right now when we don’t have the help lined up, and CAN’T really until he gets home — he can’t even be evaluated for medicaid home health care until he’s home, and will have to wait a while while it’s lined up — that he will be getting into more food he shouldn’t have and not have the routine he needs. However, Gayle is VERY good at routines, and I just have to trust she’ll be able to do it for a while with our help until we see what we’re going to do next. Right now without the I/O waiver we hopefully should get Medicaid home aides for 14 hours a week, and then after that he should be able to get Health Chek (up to 56 hours a week) once that is approved. Then that lasts until he’s 21 (only 2+ years away). Then to get that much help still he’s going to need the I/O Waiver. There is another waiver too called the Home Care Waiver and it was explained to me that you get some home health with that but not as much, but you get more home remod funds and stuff like that.

This home care site was just given to me today and I’m going to go now and read more about what will help Chris that we can get for him.

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Completely overwhelmed, but still soothed by nature’s glory




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Originally uploaded by criscollrj

I’ve noticed that nature greatly soothes me as well as prayer. And also just being with family and laughing.

But things are crazy, and I just have never any time for blogging, etc. I often think lately that I’d just like to totally quit working so I can catch up on pretty much everything and spend more time just hanging out with my kids and hubby. But I love my work, and right now it’s necessary. So I continue to get up at 3 to type and have toothpicks holding my eyes open most of the day —

  • 97 minutes to get out, proofed, by tonight – I have 6 minutes done – so why am I here? I’ll be quick!
  • Chris is officially discharged from his group home Oct. 1. However, they’re still keeping him while they look for more homes for him. I believe he’ll be home here and G & C along with us will share his care.
  • Chris’s school is going very well and they have him in a new language program that is helping him a lot!
  • We are unable to get Chris’s waiver yet as there’s still a huge huge wait list – like 15 more years maybe.
  • Ryan has a new teacher this year as well as a new autism coordinator in his school. He is doing well but won’t eat lunch or wear his hearing aides – sigh. Sunchips are my friend . . .
  • Colleen is working hard at school and enjoys times with her friends –
  • They’re all growing up so fast.
  • I am seriously seriously considering going back to school in the spring to become a speech therapist, and need to apply for my financial aid. This of course means a little cut in my work but I need to try.
  • We’re going back to the Maryland mountains Tuesday as part of our business trip and I’m going to meet my good friend Pat from a transcription board I’m on!
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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]

    A blank slate

    After typing into my personal blog, at its 3rd home right now at blog, I am a bit stymied attempting to begin this new blog that has been on my mind for a while now. Technical details like WHERE do I want to house the blog, and what to call it, have interrupted my just BEGINNING the blog, which I’m attempting to do now.

    My purpose in this sharing endeavor, to become a better resource and help to those of you out there watching your children with autism and other disabilities learn much of what I have learned, but hopefully faster, and perhaps to share with me things you have learned faster than I have. We also have co-morbidities (that’s such a terrible name, isn’t it?) in our different abilitied children – due to my dad apparently having an inheritable deafness gene, our Christopher is totally deaf (found out when he was 15; he’s now 18) and Ryan is partially deaf at age 7. I also have a slight hearing loss.

    At this moment I’ll simply direct you to this resource page: http://criscollrjblog.wordpress.com/autism/, but I have to confess that is out of date; I will most likely be updating that and moving that onto this site.[ad#Google Adsense]

    Reference to autism on 90210 last night—

    Something Ethan said on 90210 last night made me think. He was in the woods with a friend and just talking. He said this:

    Ethan: “People think I’m someone different than I am.”

    Friend, Liam: “Let me ask you something, why do you smile?”

    Ethan: “I smile because I don’t want to cause trouble for anyone. I don’t want to make anyone’s life harder. Not my teachers, not my coaches, definitely not my parents. My brother’s autistic, so they need me to be easy, not make any waves. I don’t want to cause any conflicts so I just pretend like I’m fine. Even when I’m not.”

    That really got me thinking. That is exactly the way I am…[ad#Google Adsense]

    Thinking of how to share most with this blog–

    With having a new domain, I have been trying to think of the best way to reach out to others with this blog.

    I know I need to update my resource pages and do more research on what could help people most on ideas for autism spectrum and deafness.

    I think I may also type more of the kids’ histories in here and what happened at certain ages. I think also going back and proofing my posts may be good (sometimes in blog transfers you get strange font characters in the switchover, and I know I did see some at place). I also need to tag.

    I have really enjoyed sharing through blogging, now for 6 years, and would like to do it to its best purpose and to be a help to others.

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    I never posted my 08 goals–

    So thought I’d post here. I will then look over them over the next week and make up my 09 goals. I don’t even expect to reach some of these, it’s just good to have them all written down to have an awareness of them.

    2008 GOALS (the year that will be over TOMORROW! wow)

    HOMEWORK
    • Every few weeks check Colleen’s progress on web site and follow through with teachers on items needed to be made up.
    • Boys – try and get them to write their names, and spell extra, 1-2 times a week. Find computer games for them to play. Try and help Chris focus on academics a few times a week and show Doreen how to do it too.
    CHORES
    • Colleen to continue picking up her room and to start doing her dishes (soap squeegie!) and laundry.
    • Get icon board up and done for boys’ chores.
    • Try and get us in position where dishes and laundry and daily pickup gets done every day and figure out as a family HOW!
    HEALTH
    • Me – Weigh Down. Lose at least 20 pounds. no dieting at this stressful time.
    Continue reading

    Summer and picture update


    When I tried to straighten my hair

    Not good results!

    Ryan caught me asleep typing …

    Colleen and her friend

    Colleen having coffee


    Chris after his sedated blood tests in May.  They did find out he had elevated triglycerides and low “good” cholesterol.

    The man who succeeded in keeping Chris from running out of the hospital before sedation.

    Walk Colleen & I took.


    cookout





    Geese by Mcdonalds!



    Ryan fell asleep in my office chair behid me working.

    The flat pool – sigh.  The rim leaks.

    Anime girls…


    Brunch with Lisa and Eric after church.
    Me being goofy, playing with my hair.

    Ryan playing the drums

    Ryan at his sedated ABR – he also had a sedated blood test a week before.  They did fill 4 cavities and found his hearing was unchanged.  they did find a slight genetic prolem which Rog, me and Colleen are all being tested for tomorrow…..

    I love the smile!

    We saw two awesome sets of fireworks!  Chris didn’t want to leave the one and it took us about 2 hours before he’d get up off the ground!  He watched the second one from the car —
    Rog and I went on a date with our friends, and here I am looking like Rosanne Rosanna Danna 😀  This was for our 20th and their 18th anniversary.  It was very very fun at a fish house!

    Those goofy guys!

    Ryan at the picnic the next day at their house.

    Bullet update —

    • I stay very tired.  I should be sleeping now!
    • I have increased from about 1 hour of audio a week to 3-4 hours of audio.  Each hour of audio involves 6-9 hours of work 😛
    • I do love my job.
    • Each boy has 40 hours of aides available to them now.  What a blessing it is!  I just wish we could get steady workers for Ryan.  Our favorite one quit.
    • Chris has had the same aide since 04!  We love her!
    • I have a chronic cough now and no idea why.  I have to go back on Claritin.
    • Roger is working more hours as well and did about 8 hours of transcription today for me.  He’s still doing court research in Ohio and PA.
    • Along with our rise in income, has accompanied a sickening raise in gasoline and food prices.  So we’re not progressing.
    • I love our house and area we live and hope we don’t ever have to leave until we’re ready to retire in North Carolina.
    • I went back to church about 6 weeks ago and am so happy!  I love the praise music especially with the band.
    • I want to play guitar again.  They’re at in-laws after ryan smashed Colleen’s guitar.
    • Ryan is almost potty trained – still having trouble with #2….
    • My house is a wreck and I never have time to clean it.
    • I rely a lot on my family…

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