Re: Why is is so hard to get assistance?

[Guest guest]

,

If your daughter is ten and can't walk or talk, ask her doctors to label her as

MR. You'd probably be able to get more assistance that way. Does your child

use any equipment like g-tube, vent, etc.

[Guest guest]

>

> ,

>

> If your daughter is ten and can't walk or talk, ask her doctors to

label her as

> MR. You'd probably be able to get more assistance that way. Does

your child

> use any equipment like g-tube, vent, etc.

>

>

The Doctor's all call her " developmentally delayes " which is just a

nicer way of saying Mentally retarded. To this center, these are two

different things. " Not being able to walk and talk does not

constitute being mentally retarded. " Leigh's has to be derived from

mental retardation - is what they tell me. The only equiptment she

uses is a wheelchair and she has some othodics, other then that she

can eat and breath without assistance.

[Guest guest]

Ask your doc for an official MR label. Labels help. MR can cause disability--

inability to communicate needs, etc. But I don't know that MR is really where

anyone's disability comes from. I mean MR is always caused by something,

even if the something is unknown. Docs don't like the MR label because it

implies something permanent and a person is most likely uninsurable with

that label. Whoopee, our kids are most likely uninsurable anyway.

Have you ever been to Our-Kids? It is an email group for parents of disabled

children. You might be able to find help there.

http://www.our-kids.org/

[Guest guest]

Do you mind if I ask what state you are in? Some states have better

services than others.

Does your daughter qualify for medicaid? If so, your state should

have a medicaid waiver program where your daughter could qualify for

a caregiver a certain number of hours per week, taking some of the

stress and expense off of you. Since this is a federal program, all

states have them in some form or another. It may be called a "

Beckett medicaid waiver " or just medicaid waiver.

Another good place to check for additional money available is your

state early intervention program. Each state has one, but

unfortunately, they are all named something different. There may be

money " hiding " out there that is not well publicized, such

as " flexible funding. " This is a program that the legislature passed

in my state (VT) which alocates a certain number of dollars to

families of disabled children to take some stress off of them. It is

usually less than $1000 per year, but it is a huge help. Programs

like this are usually not well advertised and you have to dig for

them.

Beth

>

>

> Hello, my name is Barbosa and I have a 10 year-old girl

> (Amber) who was diagnosed with Leigh's back when she was 1. I have

> had the hardest time getting any sort of financial assistance and I

> was wondering why this is. I keep running into road blocks because

> her condition " isn't well known " We cannot collect SSI because our

> income exceeds their guidelines. I have been working with Region

> Valley Center and they only work with children who have Cerebal

> Palsey, Epilepsy, Autism, or Mental Retardation. Even after

telling

> them that Amber could not walk or talk - they still said she does

not

> fall in their critera. I will need some sort of financial help in

> the future in order to care for her full time. Can someone point

me

> in the right direction?

[Guest guest]

We live in California. I will look into those programs you mentioned. Thank you so much for your help. Some people feel I should just already know about these things. Unfortunatly, help doesn't come to you -- you have to go to it. Thanks so much for the advice, I really appreciate it.Beth wrote:

Do you mind if I ask what state you are in? Some states have better services than others. Does your daughter qualify for medicaid? If so, your state should have a medicaid waiver program where your daughter could qualify for a caregiver a certain number of hours per week, taking some of the stress and expense off of you. Since this is a federal program, all states have them in some form or another. It may be called a " Beckett medicaid waiver" or just medicaid waiver. Another good place to check for additional money available is your state early intervention program. Each state has one, but unfortunately, they are all named something different. There may be money "hiding" out there that is not well publicized, such as "flexible funding." This is a program that the

legislature passed in my state (VT) which alocates a certain number of dollars to families of disabled children to take some stress off of them. It is usually less than $1000 per year, but it is a huge help. Programs like this are usually not well advertised and you have to dig for them.Beth> > > Hello, my name is Barbosa and I have a 10 year-old girl > (Amber) who was diagnosed with Leigh's back when she was 1. I have > had the hardest time getting any sort of financial assistance and I > was wondering why this is. I keep running into road blocks because > her condition "isn't well known" We cannot collect SSI because our > income exceeds their guidelines. I have been working with Region > Valley Center and they only work with children who have Cerebal > Palsey, Epilepsy,

Autism, or Mental Retardation. Even after telling > them that Amber could not walk or talk - they still said she does not > fall in their critera. I will need some sort of financial help in > the future in order to care for her full time. Can someone point me > in the right direction?Please contact mito-owner with any problems or questions.

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[Guest guest]

She does qualify for services through the MDA. www.mdausa.org They do not offer cash assistance, but do help with medical equipment. They are also a great resource for knowing about all the charities in your area.

I wish I could be of more help. We are going through the same thing, with SSI. I had to stop working because of our mito kid, and when I called SSI they honestly laughed at me. My poor husband is working on average 16 hours a day 6 days a week to support 7 people. We would have to starve before we could ever get SSI. It's really not fair.

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[Guest guest]

Also, next time you see a doctor, ask to see a social worker. Even many pediatric practices have access tosocial workers who can help guide you to the right agencies for services.Rod --- CARRIE BARBOSA wrote:> We live in California. I will look into those> programs you mentioned. Thank you so much for your> help. Some people feel I should just already know> about these things. Unfortunatly, help doesn't come> to you -- you have to go to it. Thanks so much for> the advice, I really appreciate it.>

[Guest guest]

Hope you don't mind, I got a little more information for you, in case

you did not already have it.

http://www.nichcy.org/stateshe/ca.htm lists California State

resources and looks like it could be a valuable tool.

It lists

Programs for Infants and Toddlers with Disabilities: Ages Birth

through 2

Rick Ingraham, Part C Coordinator

Children and Family Services Branch

Department of Developmental Services

1600 9th Street, Room 330, MS 3-8

Sacramento, CA 95814

;

E-mail: ringraha@...

Web: www.dds.ca.gov/EarlyStart/EShome.cfm

Programs for Children with Disabilities: Ages 3 through 5

Drouin, Interagency Liaison

Special Education Division

Administrative Services Unit

Department of Education

1430 N Street, Suite 530

Sacramento, CA 95814

Web: www.cde.ca.gov/sp/se/

These would be a great place to start since they would probably be

aware of how to continue their services past the ages they cover.

Next, is

Programs for Children with Special Health Care Needs

n Dalsey, M.D., M.P.H., Interim Chief

State Children's Medical Services Branch

Department of Health Services

P.O. Box 942732

Sacramento, CA 94234-7320

E-mail: mdalsey@...

Web: www.dhs.ca.gov/pcfh/cms/ccs/

This sounds very much like a program that we have In VT which

coordinates therapists and such for the child. THey often have lots

of information about other programs and the " flex funding " I was

telling you about in VT is in this program.

The website lists an advocate as

Clancy, Executive Director

United Advocates for Children of California

1401 El Camino Avenue, Suite 340

Sacramento, CA 95815-2700

;

E-mail: information@...

Web: www.uacc4families.org

Hopefully, this will be of some help to you. Another way to find out

about programs is to try to get your hands on your states proposed

budget for 2006. This should list each and every program available

to Californians. I tried to do that for you, but your governor does

not put a line item budget on his webpage, only general figures.

I think that it is so important to get the services you need and

deserve. Even in a wonderful state such as VT, I have seen a couple

families fall through the cracks. I hope you get what you need. If

you are interested in the services my son gets (so you can have some

idea what you might look for in your own state) you can click on his

web page at http://hometown.aol.com/marybethlefevre/page3.html

Beth

>

>

> Hello, my name is Barbosa and I have a 10 year-old girl

> (Amber) who was diagnosed with Leigh's back when she was 1. I have

> had the hardest time getting any sort of financial assistance and I

> was wondering why this is. I keep running into road blocks because

> her condition " isn't well known " We cannot collect SSI because our

> income exceeds their guidelines. I have been working with Region

> Valley Center and they only work with children who have Cerebal

> Palsey, Epilepsy, Autism, or Mental Retardation. Even after

telling

> them that Amber could not walk or talk - they still said she does

not

> fall in their critera. I will need some sort of financial help in

> the future in order to care for her full time. Can someone point

me

> in the right direction?