Re: help needed, please

[Guest guest]

jill,

good luck for your friend and your a kind person to help her look and

search....in virginia where i unfortunately live, its based on income and

there is a three year waiting list........ i was having a very bad day when i

called to check the last time and they told me there is nothingthey can

do.....i told them what if i was to end up in a psych ward and the lady said

if their are two people in the home then you might havea better

chance.....isnt that crazy........gotta be a crazy mom to get services for my

child to help prevent me and her both from going off deep

end..........welcome to virginia.......good luck and hang in there

[Guest guest]

In a message dated 8/11/00 12:35:00 PM Pacific Daylight Time,

jcantonwine@... writes:

<< I called Social Services to

inquire about In Home Support Services. They told me

this was only available to children who receive SSI

(he does not based on his parent's income). They >>

Jill,

This is sooooooo timely! I have been going through that this week and last

week...It is a stupid income game they play, now mind you we are not " rich "

but not poor either...I have had it, but am just beginning to fight!

Jeannie

Mom to Mark and

[Guest guest]

I am requesting help and information on behalf of my

friend. Her son is currently in the hospital after

suffering a severe seizure (he is autistic and also

has a seizure disorder). I am assuming he will need a

lot of care when he returns home. I know that my

friend will need a lot of help - she has three other

children. We live in California. I have a call in to

our Regional Center. I called Social Services to

inquire about In Home Support Services. They told me

this was only available to children who receive SSI

(he does not based on his parent's income). They

" seemed " to say that if my friend worked outside the

home, they could help her out. I hope I don't offend

anyone but.....this sounds like one of those stupid

government rules. If you choose not to stay home and

take care of your child, " they " will help, but if you

don't have a paying job you're on your own??? And

this business of assistance based on income. I don't

know anyone except the VERY rich who can afford

in-home care (more than 24 hours a month, please).

Sorry...I'm worried about my friend and frustrated

with the system. On the other hand, I know there must

be something I can do to help her. I know of one

family in our area who had round-the-clock assistance

for their two disabled daughters. I don't know how

they accomplished this, but their daughters did live

away from home for a year, and I assume lawyers were

involved.

Any ideas of who I should call and what I should say

(I'm assuming that if I say the *right* thing I may

have more luck???)

thanks,

Jill

[Guest guest]

Jill: I do not know if the Beckett waiver law will help in

california, but this is the place that helps people receive help in the home

so that the child does not need to hospitalized.

Sara

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[Guest guest]

jill, sorry i dont know how to help and im a long way from california to

offer my assistance, or i would, i completely agree the system sucks, we

dont get any ssi either, we use to get a whole whopping $8 per month then

after a yerar or so, they slapped a 2700 over payment bill on us a year and

a half after the event, so its their mistake we did our part sending in ur

pay stubs and filling out those yearly reports, god forbid that eventhough i

love my kids very much and im always there for them very involved wit their

lives when it comes to care and activities that i do something for myself

let alone benefit the family by helping to provide money for food on the

table, hell even nthan's trike is costing us o over 500 with a deal and the

local bike guy helping us out and all those moms who have to stay at home

because even if they get a minimum wage job its too much money and they take

all the meical and other welfare away from them wham like that, then they

are up sh-- creek if something drastic were to happen, i wonder if anyone in

the government actually has to care for a disabled child and have to worry

abut money and care issues the way the system is i very much doubt it. sorry

about the vent.

>From: jill cantonwine <jcantonwine@...>

>Reply-egroups

>egroups

>Subject: Re: help needed, please

>Date: Fri, 11 Aug 2000 12:32:35 -0700 (PDT)

>

>I am requesting help and information on behalf of my

>friend. Her son is currently in the hospital after

>suffering a severe seizure (he is autistic and also

>has a seizure disorder). I am assuming he will need a

>lot of care when he returns home. I know that my

>friend will need a lot of help - she has three other

>children. We live in California. I have a call in to

>our Regional Center. I called Social Services to

>inquire about In Home Support Services. They told me

>this was only available to children who receive SSI

>(he does not based on his parent's income). They

> " seemed " to say that if my friend worked outside the

>home, they could help her out. I hope I don't offend

>anyone but.....this sounds like one of those stupid

>government rules. If you choose not to stay home and

>take care of your child, " they " will help, but if you

>don't have a paying job you're on your own??? And

>this business of assistance based on income. I don't

>know anyone except the VERY rich who can afford

>in-home care (more than 24 hours a month, please).

>Sorry...I'm worried about my friend and frustrated

>with the system. On the other hand, I know there must

>be something I can do to help her. I know of one

>family in our area who had round-the-clock assistance

>for their two disabled daughters. I don't know how

>they accomplished this, but their daughters did live

>away from home for a year, and I assume lawyers were

>involved.

>

>Any ideas of who I should call and what I should say

>(I'm assuming that if I say the *right* thing I may

>have more luck???)

>

>thanks,

>Jill

>

>

>

>

[Guest guest]

Jill,

What kind of seizure and what kind of care do you anticipate him needing.

Will the Dr. be able to get the seizures under control with medication? If

not maybe the child would qualify for nursing respite or definetely more

respite for uncontrolled seizures. Seizures are very scary, but often can be

controlled with medication, I hope things work out for your friend.

Marisa

[Guest guest]

Jill,

I think your friend may be able to get the support she needs through Regional

Center. She may be able to get Respite for the time she need it while her

son is recouperating. I know I got extra help when had hospital stays.

It she doesn't already get Respite, they will pick her up and get that

started and if she has it monthly, they will probably give her the hours on

need basis instead of an allotted time each month, in addition to what she

has. I know they have really been good about that with .

I'm back and still going through my 394 EMails, which keeps getting longer as

I'm reading. Will start posting soon. THEY LOST MY DAMN LUGGAGE!!!!!!!!but

and I had a good time in spite of it all.

[Guest guest]

michelle, i am glad your back safe and sound.....cant believe they lost your

luggage....hope nothing to valuable.........take care adn dont strain to much

over the 394 emails...lmao