To Cindy-sibling question

[Guest guest]

 

Hi Im sorry it  has taken me so long to respond to your sibling question.

I was hoping others sibs would pipein too. First of all let me say I know that

you are a great advocate so I must assume that your other children are too. I am

sure you have done a fabulous job at giving your kids the necessary information.

 

To answer your questions, I wish my parents (when I say parents I mean my

father) had been willing to have an open conversation about my brother’s

future. I wish they would have had an open and honest discussion about their

hopes and dreams for Nick and what they see my role to be. I wish I could have

giving my input on what I want my role to be. I wish we were all on the same

page with having a Special Needs Trust and who will be in charge. I wish my dad

would have taken into consideration the knowledge that I have in the field and

respect me for it. Because I have been in the field for a long time I am very

away of all of the benefits, how they work and what is needed to preserve them

for my brother. I wish we had a letter of intent, which is basically the road

map about Nick that I will need in order to ensure his health and happiness in

the future. I wish that I would have had the opportunity to meet others with

siblings like Nick when I was

younger. I needed that support then and I need it still today.  Like parents

it’s really nice to have someone who gets it that we can bounce our

concerns, struggles as well as our accomplishments with as siblings. Even though

I work in the field it was not until I meet other siblings that I started to

learn the real importance of future planning not only with my family but with

Nick as well. Unfortunately that all back fired for me, but it is what powers me

to educate others on the importance of supporting and providing information to

siblings.

 

I participated in a webinar today that you might find interesting

http://cc.readytalk.com/play?id=fpvozn This is the audio recording of it. If

anyone would like the power point I can email that to you or maybe Laurie can

post it.

 

Right now I don’t think there are any organized groups in Nevada for siblings

but there are tons of online resources.  One is Sibnet which is a listserv like

this but for adult siblings all over the world.  The Sibling Support Project

hosts this and has tons of other resources www.siblingsupport.org.  A new

national organization is the Sibling Leadership Network. 

www.siblingleadership.org  or of course SIBS (Supporting Illinois Brothers and

Sisters) www.sibsnetwork.org  has resources that are not just for IL sibs. 

 

I hope I answered your questions.

 

 

 

Regarding siblings....

Adam's two brothers live, work , and go to school in Nevada. So getting to

them to a training here is out of the question. Over the years the three

have developed a good relationship enjoying many of the same things. Art

and I have tried to fill them in on the nuts and bolts of disability

life...SSI,SSDI, MED/care,etc. etc.

We are their source of information. What I would like to hear from are

current siblings caring for a sib with disability. What kind of things do

you wish your parents had told you. Or what kinds of things do you wish

your parents had done early, before they died that would have made this

transition smoother. I keep thinking we have everything covered, or in the

process of being covered. Like many of us, I want this so well constructed

the two of them could come right into town and pick up where we leave off.

We have three ring binders with information sorted with each benefit. We

have a list of names, numbers, policy numbers, bank numbers etc.

I would appreciate any thoughts or suggestions folks may have.

Thank you, Cindi  

 

 Tara Conley

www.sibsnetwork.org

Please HELP me raise money for SIBS by searching the Internet

with www.isearchigive.com/SIBSand when shopping on line go to

www.igive.com/SIBS

 Resources:

 AdultSIBSNet listserv:  AdultSibsNet/

  Face book group SIBS Network:

http://www.facebook.com/home.php?#/group.php?gid=9209702292

  Face book cause Supporting IL Brothers and Sisters: 

http://apps.facebook.com/causes/118226?m=63ef53bf