Sibling Leadership Network with Autism NOW July 5, 2011

8/6/2019 Sibling Leadership Network with Autism NOW July 5, 2011

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National Health Interview Survey

with family

76%

in long termcare

10%

with spouse

6%

own home

8%

Source: Fujiura, G.T. (2001). The forgotten generation: A Demographic Argument on Behalf of the Continuum ofIntellectual Disability. RRTC on Aging and Mental Retardation.


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1 110984

712

0

200

400600

800

1,000

1,200

< 41 yrs 41-59 yrs 60+ yrs

Age of Household Head

PersonswithMRDD

in

thousands

Source: (1998). Demography of family households. American Journal on Mental Retardation, 103, 225-235.(2005) Braddock et al. State of the States, University of Colorado.


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Statedata.info


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5


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I had hoped that

she would be the one

Photo courtesy of ick Harris, Flickr


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Photo courtesy of Tiago Ribiero, Flickr

Their life situations dont allow it


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Photo courtesy ofStefan Baudy, Fl ickr

first of all, it has to be up to them


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numero uno

Photo courtesy of Beaukiss Steve, Flikr


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I know if my brother was here,

itd be [him]

Photo courtesy of decade_null, Fl ickr


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Photo courtesy of tick_followed_tock, Flickr

trying to make it to where theycould see that he exists


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14Photo courtesy of ewiemann, Moskitomaniac, Evan, S. Photography, Flickr


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they kind of clued me in on whereto go from there

Photo courtes of Marco Bellucci Flickr


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...I did have to really go to very highlevels on occasion

16Photo courtesy of bregdur, Flickr


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that made it a little bit easier toget in the door

Photo courtesy of Daniel Schwen , Wikimedia


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he was going to be a burden to the

United States government

Photo courtesy of dbkings, Flickr


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he had to jump over the fence

Photo courtesy of Wonderlaneon Flickr


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I don't see any great things outthere for any of us when we age

especially them

Photo courtesy of jenny downing, Flickr


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whats going to happen if all of a

sudden there just isnt funding?

Photo courtesy of Martin Kingsley, Flickr


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if he couldget out on his own,

that would be great

Photo courtesy of Rick McCharles, Flickr


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Photo courtesy of mugley, Flickr


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Im the man of the house

Photo courtesy of Balttiarallaa at http://ajt.iki.fi/travel/balttiarallaa_revolutions/img_7029_genis_talo_medium.jpg


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Photo provided courtesy of Kevin, Flickr

If I had all those things, I wouldnthave to rely on my sisters.


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Our siblings, the self-advocatesNational network-making Finding

UsInternational networking-linkages


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State

State level collaborations with agencies

Social networking

Support for some, advocacy forothers Reachingout to self-advocates


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Were the NKOTB

Networkof 7 stateorganizations, but growing

ProvideTAto peoplewhowant to start

Policy andAdvocacy, Research,Services andSupports

Siblingleaders-were everywhere Connections todisability groups,plans to networkwith aging andwomens groups aswell


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Siblings are notparents

Learn about the siblinglifecourse,beproactive- the

relationshipchanges The moreconnections, thebetter

The needsof theolderwill notbe the same as the

needsof the younger - contexthaschanged Your successwith families may dependon siblings!


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Be a trendsetter!

Include siblingsin programs

Includedistant siblings

Expand support, not necessarilyprograms

Invite siblingsdontwait!


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Providegreater access to employment

recreationalprograms quality residentialoptions

Knowfinancial supportoptions for families Legal services/resources Transitionprograms/initiatives that

maximizechoice for siblingswith andwithoutdisabilities


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"Wewill notovercome thecurrentcrisis solelywithpoliticallogic.We needliving roomslike thoseinwhichwomen oncediscovered theywere not alone. [We need]the strategy of Gandhi and King. Unexpected

gatherings and unpredictedcoalitions. Peoplecomingtogetherbecause they disagreeon every subject saveone:the need topreserve thehuman. Boisterous revival and

silent meditation. Grand assemblies and simple suppers. Sam Smith


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John Kramer, Ph.D.ResearchAssociate

Institute for Community Inclusion

University of Massachusetts,Boston100 Morrissey Blvd.

Boston, MA02125

Phone: 617-287-4369Phone: 312-436-1839

E-mail: [email protected]

Website: http://www.communityinclusion.org


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Allpictures usedin thispresentation arelicensed for fair use under Creative Commons-

http://creativecommons.org/licenses/by/2.0/

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Sibling Leadership Network with Autism NOW July 5, 2011