Respite care

November 29, 2000

nancy,

Wow, I used to do respite work inLouisiana, and the family got a lot more

then 30 hours a month. Well maybe it was because the mother was a single

mom, I don't k now for sure.

I do remember the company I worked for ended up getting into some big

trouble because the woman in charge of accounts was embezzeling money big

time, adding on hours to providers time sheets that weren't actually used.

It was a bit mess. Lot's of people suffered over that one. The lady I

worked for in her home ended up being a very close friend of mine to this

day we still talk. We kept our own records together, her signing off on

every time sheet I turned in, maybe that's why we escaped the troubles the

company ended up in. It was more then 6 years ago that all that accord, so I

am sure rules have changed down there. ( I don't live in Louisiana any

longer. I live in Missouri now. )

But I do agree so much, if anyone has access to respite services, that is

great. Family's need that. I don't think they do that in Missouri, I

checked into it when I moved here, and was told they don't offer services

like that here. It's what led me into the schools. Which I do like also.

But anyway, let me throw my hat into the advocacy for Respite Providers. If

you aren't getting this service, go ask about it, and do that one. You

deserve it.

love to all

L.

November 29, 2000

,

I missed that you're in Missouri. What part? I'm originally from Cape

Girardeau, but I'll be moving to Granite City, Illinois (just east of St.

Louis) in 4 months.

had a really good school in Cape (after we moved him out of the one

where he was made fun of and mentally abused). He loved his teacher. I

tried to look her up last year when I went home, but she had changed schools

and they didn't know to which one. She was great with him, getting him to

do things no one else could. She's the one that told me she thought his IQ

score of 69-70 was probably low, and we would be surprised when he finally

started talking.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD, possibly to lose all but DS and

gain Celiac

And , 17 months and Strong Willed

May 30, 2001

We do cindy, through the MR waiver and HCBS waiver

here in iowa we get respite, SCL (supportive community

living) and also get medicaid --its sort of like both

of those where an helper can come in and shower, or

other ADL or health issues even help clean the house

or something to that affect, its just a different

sheet to fill out thats all, and gets billed

differently too. I am also seeking board membership

for the Govenor's Developmental Disability Council,

( a memeber asked me to join, its cool)and we are

currently working on PAS or personal assistant program

so most any individual can stay at home and this aid

helps them at home with ADL's and can help at work so

they can be as independent as possible not requireing

the need of any kind of nursing or group home

setting.I feel more useful to nathan and other

challenged individuals this way, hopefully making a

better opportunistic future, but its hard work, i

think we spend half of the time arguing, trying to

figure out things and to keep the cost so the

government at least considers it. And comparing it to

other states and their statistics etc. shawna.

--- Lee <texasbluebonnets@...> wrote:

> Do you guys have in home respite providers? Just

> curious, I used to do in home respite care.

>

> cindy

>

> [Non-text portions of this message have been

> removed]

>

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May 30, 2001

,

Yes we get in home respite. It's about 16 hours a month per child. JJ gets

10 extra hours a month also.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: " Lee " <texasbluebonnets@...>

>< >

>Subject: Respite Care

>Date: Wed, May 30, 2001, 1:27 PM

>

>Do you guys have in home respite providers? Just curious, I used to do in

>home respite care.

>

>cindy

>

May 31, 2001

, we get 32 hrs a month for the last two years...we used to get 10hrs

for about 10 years, but when Rox started acting up and couldn't go to a

program they increased it. Our trouble is can't find a GOOD person to do it.

I have had adults, two at a time, and now use teens from the high school,

always come home to some scene or another but nothing too serious, (kids

eating out the whole house, one in the middle of the street, my computer with

Mickey mouse on it, etc.) Of course we have 5 with disabilities and my

husband and I are pros...we have to pick between in home or out of home so

that makes it hard..you always don't need one kind. They pay at $10 an

hour....I pay $12 an hour for one person $20 if I hire 2....we make up the

difference. So if we go out to the mall for a few hours or a movie and

dinner respite could be $80,,,,seems a little outrageous to me. My hubby and

I have date nite every Wednesday....otherwise we would never see each

other...we usually walk the mall, shop, eat and talk about the kids.:-)

Judy R.

May 31, 2001

--- Lee <texasbluebonnets@...> wrote:

> Do you guys have in home respite providers? Just

> curious, I used to do in home respite care.

Hi ,

Yes we have in home respite care, but I would not give

you two cents for it. We have had a care provider run

screaming from our home. I have had one bring their

children's psych. report and evals. and want me to

tell them what to do.??? I don't know where they got

the idea I was here to support them, and give them

advice. Now, don't get me wrong. I will help in any

way I can. But I was the needy one then, didn't know

the person, her child, or their situation. It was her

first day for gosh sake. We get 8 hours a week, and

they don't keep their appts. with us. Call and cancel

at the last minute or don't show up half the time.

The last one called me twice in one day to confirm her

appt. I was out. When I confirmed on her machine,

she called back a 1/2 hr. later to say she was at the

doc with strep.!!?? But would be here shortly.!!?? I

told her no. She cancelled the next two appts and

while we were out of town, left a message on our

machine that she was taking an emergency vacation,

thus wouldn't be here. I give up...or maybe....Do you

want to come here? 's really a very nice boy....

Deb

__________________________________________________

May 11, 2003

In a message dated 5/11/2003 7:55:49 PM Eastern Daylight Time,

lisa@... writes:

> What do you guys think of respite care? It has been suggested to me that

> we enroll BJ in a respite care program where a family will take him for

> one weekend a month.

Liam's in a recreation/respite program where they take the kids for the day,

one Saturday a month and do fun things. It's run by the same agency that

runs his school. Last weekend he descided he didn't want to go when the bus

pulled up. I put him on the bus anyway. He had a terrific time and was

'talking' up a storm when he came home. They went to the local fair. Next

month they're going to the circus. It gives me a little break and him a

social life.

If I had another little one and one on the way I'd seriously consider a

weekend away every now and then. Why just last week I posted here that the

next responsible person who offered to take Liam off my hands for a while

would get him! Tonight my grown niece offfered. I told her to be careful

because I will take her up on it. Some times you just need a little break.

Kathy, Liam's mom( 5)

May 11, 2003

I could use a little respite after a day like today

Karrie has a cold and she's feeling very unhappy. Therefore, I should be as

miserable as she is (in her way of thinking).

Sue mom to Kate 13 and Karrie 7 w/ds

p.s. I'm going to go clean up the latest set of scratches she's put on me

today

May 11, 2003

I used respite sparingly for the same reasons as you state. When I did use it,

it was such a relief. I usually used it for hubby and I to have time away

together....so more like babysitting. When I could, I used it for one night

away to give us a break...kind of like sending your child to a sleep over.

Bridget enjoyed getting away from us too. She could usually get people to baby

her, which she loves.

Our respite monies no longer exist. I miss it, even though I used it only

occasionally.

mom to Bridget 10

respite care

OK

have a quick qtn

What do you guys think of respite care? It has been suggested to me that

we enroll BJ in a respite care program where a family will take him for

one weekend a month. We had allot of trouble with BJ yesterday ( SUn)

with him biting,pinching,pushing and picking Natasha up and dumping her

in things ( yes mildly funny to think about-but not see )

DH says he has been thinking of it for awhile, but I feel as if I have

failed somehow for people to suggest this. I mean there are many parents

out there with " normal " kids that cant shovel em out to someone else-

why should i do it to BJ. His aide at kindy said that BJ would probably

have a ball, but I am in about 200 minds over this.

What do you guys think?

--

Leis.... Aussie mum to 5 ,Natasha 1 and Jellybean due Oct 03

An adventure is only an inconvenience rightly considered. An inconvenience is

an adventure wrongly considered.

G. K. Chesterton (1874 - 1936)

May 12, 2003

In a message dated 5/11/03 10:19:15 PM Central Daylight Time,

writes:

>

> OK

>

> have a quick qtn

>

> What do you guys think of respite care? It has been suggested to me that

> we enroll BJ in a respite care program where a family will take him for

> one weekend a month. We had allot of trouble with BJ yesterday ( SUn)

> with him biting,pinching,pushing and picking Natasha up and dumping her

> in things ( yes mildly funny to think about-but not see )

>

> DH says he has been thinking of it for awhile, but I feel as if I have

> failed somehow for people to suggest this. I mean there are many parents

> out there with " normal " kids that cant shovel em out to someone else-

> why should i do it to BJ. His aide at kindy said that BJ would probably

> have a ball, but I am in about 200 minds over this.

>

> What do you guys think?

>

> --

> Leis.... Aussie mum to 5 ,Natasha 1 and Jellybean due Oct 03

>

Leis,

I love respite. With my two year old I can call my sisters or parents and

they take him for a few hours. With there are very few people that I

can do that with.

Personally, at 's age I'd look at doing respite for maybe a day a

month working up to staying over night when he is ready.

Whenever I feel guilty about loving respite so much I remember that all

parents need a break to be good parents.

JMHO,

Karyn

March 30, 2004

We inquired about respite care about 6 months ago. We live in Kansas. We were

told that we could be on a waiting list for respite. But, because of budget

cutbacks it would be a long time before could actually receive respite. We are

on the waiting list.

I also asked for a list of respite providers. I thought if we were ever

desperate we could just pay the providers ourselves. My son with DS has a lot

of medical issues which make my mom and my husbands mom uncomfortable caring for

him. Luckily my older children adore my son with DS and are very capable of

caring for him. When we need a night out we rely on them.

Schulte

Mom to Ben-14, Brendt-13, Blake - 3 1/2 with DS.

> Date: Mon, 29 Mar 2004 22:04:35 -0000

> From: " jacksonsmom99 " <davidandjayne@...>

> Subject: Respite Care

>

> Hi there,

> I am speaking at a Grass Roots Summit this weekend about the shortage

> (understatement) of Respite Care Providers in our State (SD). I was

> wondering if any of you would be willing to share some information

> about your State's Respite Care program. Do many of you utilize it?

> Is there a shortage of providers? If not, why do you think that is?

> What's working and not working for your state? Any comments are

> welcomed.

> Thank you in advance to those that reply.

> Jayne

> Mom to (5 next month) Ds, 12, and Emma 7

>

April 2, 2004

I'm currently using a respite program in SE PA. This one has joined with Univ of

Penn hospital which provided a grant (if you qualify) You must live in a

particular area to get the grant but they also provide respite to people in all

areas at a higher price. I get a MINIMUM of 6 hours for $10.00. Even an

overnight is 10 for us. The days are limited tho and I am informed quarterly of

how many days I qualify for.

If you'd like the number to ask questions I can give it to you.

Di

Respite Care

>

> Hi there,

> I am speaking at a Grass Roots Summit this weekend about the shortage

> (understatement) of Respite Care Providers in our State (SD). I was

> wondering if any of you would be willing to share some information

> about your State's Respite Care program. Do many of you utilize it?

> Is there a shortage of providers? If not, why do you think that is?

> What's working and not working for your state? Any comments are

> welcomed.

> Thank you in advance to those that reply.

> Jayne

> Mom to (5 next month) Ds, 12, and Emma 7

>

June 22, 2008

Jill...I think we are in the same boat!!

I'm not sure about respite..I hire babysitters and pay$10 an hour...the

sitters are typically two years older than Kenzie...but we are approaching the

age that she will be older than her sitters. She loves her sitters and would

rather be home with them than out ..with us....WHAT TO DO????????????

...mom to Kenzie ( 13 DS) (Mandi 32) (Lani

soon to be 30 and pregnant) so I guess that means I'm going to be a

grannie!!!!!

S.Hancock

The hancock Team

ReMax Professionals

6813 ny Mercer

Savannah Ga 31410

\

912 897 1955

912 897 3775

912 441 6338...cell

fancymom@...

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

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June 22, 2008

Sue..That is a great idea...what do you pay them??? We have several

colleges nearby..I will look into it!!

S.Hancock

The hancock Team

ReMax Professionals

6813 ny Mercer

Savannah Ga 31410

\

912 897 1955

912 897 3775

912 441 6338...cell

fancymom@...

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

June 22, 2008

I'm curious about respite...is this something that is provided free of charge or

do you pay for it? If you pay for it, is it less expensive than hiring a

" babysitter " . I checked into it a few years ago, but it seemed more of a hassle

than anything. I pay for about 10-12 hrs. of babysitting a week for my

respite--running to Wal-Mart, going out to dinner with adults, going out on

Saturday nights with friends, going to a movie, etc.... I pay $5/hr. and have a

wide variety of teenagers that I use. Some are better than others. The good

ones really play with the kids and will do extra things with them--besides just

watching them. I'm fortunate because I work in the junior high and get to know

the kids fairly well and that's how I choose my sitters. Now it's getting to

the point where the kids are just a year or two older than Mac (except for a few

high school kids) so I " m trying not to call it babysitting, but...

I'm just curious if respite through the county or some other source is something

I should look into it.

Jill

Mom to Mac & Kit

Re: Summer plans now respite care

> Our plans are settling down into place somewhat. Karrie goes to a YMCA

> daycamp during the day while I work. She's doing pretty well and is pretty

> exhausted by the time we get home.

> We were just re-evaluated for respite services. With Karrie's dad not

> seeing her now and with Kate leaving for college in August, it will just

> be me and Karrie. She was getting respite, 20 hours a month. Since they

> are classifying her now as an adult, she gets 75 hours a month.

> She is happiest when she is alone in her room, talking with her dolls and

> watching her movies. I try to take her with me and do fun things with

> her....her behaviors are better than they used to be, but I'm totally

> exhausted after just 4 hours. I'm feeling pretty guilty about the 75

> hours. Shouldn't I be able to care for my own child? I get depressed

> sometimes that all I seem to do is work and come home and work here. I

> found someone who is great with Karrie and Karrie loves her silly. She

> does fun stuff with Karrie here at the house, where Karrie is happiest. I

> just need to be out sometimes, doing who knows what....I'm so confused

> about all this!!!!

> For those of you who have older kids and get respite, how many hours a

> month do you get? I guess I ought to add that I'm a single mom and my

> entire family (other than the girls and me) live in Florida while we live

> in IL. I am also a therapist, working with kids with special needs. I feel

> like I'm needing to justify my needs for a break

>

> Thanks for any words of advice!!

> --

> Sue mom to Kate 18 and Karrie 12 w/ds and mild autism

>

> ---- CSBC <cindysue@...> wrote:

>> Ok..yuns are being too quiet. What are your summer (or winter for our

>> friends " down under " ) plans?

>>

>> This is the first year that we will not be going to the beach for the 4th

>> of July. Tim is turing 50 on July 30th so I will be having a party for

>> him and the best part -- TJ will be home for that weekend!!!!!! The

>> worse part is that TJ will be returning to Iraq after his R & R until

>> February 2009. and her husband are moving to Texas (anyone from

>> Lubbock, here?) in August. She dropped off her pugs (only a seven hour

>> drive each way from her house..lol) for us to watch while they are on

>> their house hunting trip.

>>

>> So sometime this summer, I will be going to NC or Texas as moves,

>> maybe a trip to Tennessee where I'd have to visit Kathy..lol.

>> better get use to flying longer than 2 hours...cause we will be making

>> trips to Texas by plane since gas is too high!

>>

>> is not going to ESY - his respite worker is here every morning

>> and Katey takes over at 1:00. He is back to his intense fascination with

>> windows and lights...driving me crazy. We are getting a behavioral

>> consultant in the home soon..I can't wait!! It's sad that we had to move

>> out of Virginia and back to WV to get the community support services he

>> needs. We lost a great education system in the process and I certainly

>> have my hands full with the school here.

>>

June 22, 2008

Jill,

Ours is through the state. They pay $9.50 per hour for a personal care

assistant. The eval is brutal...she tried to be nice about it and I realize she

was trying to help, but I realized yet again how delayed we are in most areas.

We go through our local Dept. of Rehabilitation....

--

Sue mom to Kate 18 and Karrie 12 w/ds and mild autism

---- Jill <thrill@...> wrote:

> I'm curious about respite...is this something that is provided free of charge

or do you pay for it? If you pay for it, is it less expensive than hiring a