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Thread: Absolutely awesome news regarding Grant's respite this year

  1. #1
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    Smile Absolutely awesome news regarding Grant's respite this year

    G'day neuro buddies both old and new and some inbetween :)

    It just amazes us how God looks after us even in crisis situations. At the time of the crisis we do not know what is happening and then 'BOOM' everything falls into place in a positive way!

    As you know since Grant turned 18, he has gone to a nursing home for 2 weeks respite each visit. He is entitled (although not guaranteed), 56 days a year in a nursing home. Even though there have been a few times where we have had the full 56 days booked (4 stays of 2 weeks each), we never managed to get Grant in for that time because of health issues and hospital crises.

    You may recall that when Grant turned 18 DHS (Department of Human Services) folk insisted that we look into nursing home respite for Grant. Well they very kindly started the search going, and there was only one nursing home in the region that was willing to give it a go. Grant's seizure condition scared all the other nursing homes off!

    NURSING HOME STAYS

    We have been wonderfully blessed with Grant being able to go to the nursing home. It has always been something that we have looked forward to. Something that is at the end of a tunnel, if Grant has not been well. However, this year for reasons unknown to us, the nursing home offered only one 2 week stay in November = 'Crikey, Paul and Alison. That is a long wait for a break'. Well thought :)

    ISP COORDINATOR TAKES UP THE CHALLENGE

    The ISP (Individual Support Plan) coordinator, Joan, not her real name took up the challenge towards the end of last year to find a nursing home to accept Grant. Technically Grant does not have a case worker, Joan is as close as it gets, but that is okay. Long complex story, but nothing sinister at all :)

    Joan wanted us to send in the ACAS form which states that Grant is permanently disabled and does not need yearly reviews for respite. I sent the form in to her a few weeks ago.

    SUPERMAN WOULD BE CHALLENGED :)

    Last Monday Joan contacted us to say that she had found a nursing home that might take Grant in. We immediately phoned the intake person and visited next day. The nursing home is a delightful one; slightly more modern than the one Grant has gone to. A wonderful link to the nursing home is that one of the outside gardens was built by students from Alison's school. How about that eh :)

    The intake person said that we needed to contact the organisation that makes the bookings. We don't request the bookings, but instead have to have the bookings made by an organisation. Sounds a bit odd, but that is how it works. I immediately phoned the organisation. That was last Tuesday. The person said that he would have to get a person to meet us and do all the documentation etc, and couldn't do that until the following week. I explained that Alison went back to school soon, so I asked him if he could expedite the meeting.

    NOW COP THIS LOT :)

    The following day the booking organisation phoned to say that Grant was booked in twice this year and once in January of next year!

    BUT THERE IS MORE :) The respite times are when Alison is on holidays.'Paul and Alison that is unreal'. Yes it is unreal. How good is that.

    FASTER THAN A SPEEDING BULLET :)

    So, last Monday we visited the nursing home and then by Wednesday all the documention was completed, etc, etc, etc, and bookings for the year were made. Even Superman would have been challenged to move that quickly!!!

    GOD' S HAND ON THE BOOKING

    You know, when Grant's nursing home reduced his stay to 2 weeks this year, we were pretty much gutted. 'Crumbs and Crikey' we thought to ourselves. But behind the scenes God was working to bring this new nursing home on the scene. To be honest, even though we have really been blessed at the previous nursing home, many times when Grant has come home, his psoriasis has been much, much worse. Of course this could have been because of his general health, or perhaps because he was not really happy there. I don't know and we certainly don't want to judge. But clearly it was time (in retrospect) to find a new nursing home for Grant.

    The nursing home is Olivet Aged Care and is only 25 minutes away from where we live. It is run by the Christadelphians, a splinter Christian organisation, so that also is a wonderful blessing.

    Here is a link to their nursing home. (Grant will go in the high needs respite care section)

    http://www.olivet.com.au/

    Good News eh :) and God is good :) :)

    Make sure you visit the site and let us know what you reckon.

    Best wishes to you all of course. God bless and seeya.

    Paul, Alison, and Grant doing the famous BEC HAPPY DANCE

    MECS GARDEN.jpg

    Ps. Make sure you click on the small image above. It is a photo of a garden at Olivet nursing home that was landscaped and built by students from Alison's school. We want them to come to our home ASAP :)

    Foster parent, now medical guardian and administrator
    for Grant the champ aged 30, yes 30!

  2. #2
    Distinguished Community Member houghchrst's Avatar
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    Paul it looks wonderful. I am so happy that things are working out for you all.

  3. #3
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    Great news Paul. I am thankful for you.
    Carrie mom to Amanda my new angel 12-29-07.NO LONGER DXD Multicystic Encephalomalcia, Acryptic CAH, Loved to watch mtv hits, wrestling, 3 stooges, Andy Griffith and Spongebob Square pants.

    And Josh 21 year old brain.

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    Distinguished Community Member andromeda31's Avatar
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    That's awesome! I looked at the website and it looks like a really nice place. The garden is beautiful....send them to my house after yours! LOL! :) I bet it feels great to look forward to some breaks! I have my annual scrapbooking weekend away coming up in March (I go every yr with my friends) and I am counting the days!! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    It looks lovely Paul. Just curious, but why are all the facilities for the elderly? Surely there are other children like Grant with different disabilities. Where do they go and what do they do? There is nothing in the States like this for temporary in house respite care that I know of. Canada has Canuck Place, which is amazing. If I ever get a million plus dollars, I would love to find a great big house and make it into a place for disabled kids and their families to get in house respite for free like Canuck does. No worries, no bills, just great quality care in a beautiful, serene garden of eden open to the whole family. Wouldn't that be nice???
    grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  6. #6
    Distinguished Community Member houghchrst's Avatar
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    Hi Tami. I must be misunderstanding what you say when you say there is no temporary in house respite care in the states. I know that Google is full of respite care places. Maybe it is not the same thing as what I am familiar with.

  7. #7
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    Hi Tamie.

    The only place that Grant can go is where there are nurses, and that is a nursing home. Nursing homes, generally only take older adults, over 55 years of age, but there are a handful of young folk like Grant who is now 23, who will take Grant.

    There are many respite houses around that could possibly take Grant and he would be with people his own age, BUT they don't have nurses and therefore Grant can't go there.

    Best wishes to master Tyler. I trust you are fighting fit now Tamie.

    God bless and seeya,

    Paul, Alison and Grant the champ.


    Quote Originally Posted by Tamie View Post
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    .... It looks lovely Paul. Just curious, but why are all the facilities for the elderly? Surely there are other children like Grant with different disabilities. ......
    Foster parent, now medical guardian and administrator
    for Grant the champ aged 30, yes 30!

  8. #8

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    Wonderful news, Paul! It looks like a great facility.

    - momster
    Momster, mom to 2 boys: one of whom has CP, NLD, ADD, anxiety disorder, osteopenia/porosis and a few other letters following his name; and married 25 years to a wonderful guy

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Paul, Grant & Alison))))))

    Olivet looks like a lovely place, clean, well maintained, with beautiful grounds. When you visited, did you meet any of the staff or nurses? Will you be "training" them in Grant's care needs?

    I can certainly understand why Grant would need respite in a facility which offers nursing care. Jon would need that as well, and I doubt many places would accept him given all of his appliances. Naturally, you want the most capable and qualified care givers for Grant.

    ((((((Tamie))))))

    Have you checked with Regional Center about respite care? In home respite care might still be available (budget cutbacks ... so I'm not sure). Before Michael's illness, we had LVN's for respite. A few hours at a time, just to go out to dinner or to an event.

    Years ago, there were designated "respite homes," with a certain number of available beds, as well as Skilled Nursing Facilities with respite bed space. I haven't explored that for many, many years, so I have no idea what is out there now.

    Praying that you and Tyler are healthy and doing well.

    ((((((Paul)))))) Enjoy your respite time!

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  10. #10
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    Hey Rose,

    Yes it is a beautiful place. We did meet the placement person, but not any of the senior staff. Before Grant goes to stay, we will certainly want to meet with one or more of the nurses to discuss Grant's special needs. The care plan from Grant's previous nursing home, is extremely thorough. Olivet, which is a stones throw from Grant's other nursing home, work together with the other nursing home sometimes. I will see if I can send the care plan to Olivet. Of course 7 days a week, we will get Grant's daily carers into Olivet for 4-5 hours a day, and they will do Grant's home program with him, so I think we have all bases covered :)

    Best wishes as always and seeya.

    Paul, Alison and Grant the champ.


    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Paul, Grant & Alison))))))

    Olivet looks like a lovely place, clean, well maintained, with beautiful grounds. When you visited, did you meet any of the staff or nurses? Will you be "training" them in Grant's care needs?

    ...

    ((((((Paul)))))) Enjoy your respite time!

    Love & Light,

    Rose

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