Fw: (NOEWAIT) Remarks of Sharon , ADD Commissioner to 1st meeting of President's Committe

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Sounds like a good start for the President's Committee...

Ellen

Ellen Garber Bronfeld

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(NOEWAIT) Remarks of Sharon , ADD Commissioner to 1st meeting of

President's Committe

Remarks of Sharon , ADD Commissioner to 1st meeting of President's

Committee on Intellectual Disabilities

" It has been amazing to hear these voices as we have listened to and met with

all of these people … in particular, a few voices stood out:

- The strong voices of parents of individuals living in congregate institutions

who share a passionate desire for a good life for their son or daughter, but

cannot see a path that allows for a quality life in the community, in part

because of the failure of imagination in many regions and many states to find

ways to truly support and integrate people;

- The different vision of the “next†generation, who have benefitted from

the past 50 years of disability policy change and civil rights, and have grown

up with expectations and dreams that reflect the evolution of our system;

- The aging parents who are simply tired. Tired of fighting the for support,

tired of worrying about what will happen when they die, tired of feeling like

the complex, fragmented systems are set up to stymie as much as to assist;

- The youth who spend 21 years in our educational systems but did not earn a

diploma… yet want so desperately the same things that others in their twenties

want – to live in a home of their own with people of their choosing, to earn a

living in a paid job, to control their own resources, to get married (have

sex!!!) and to make decisions about their own lives;

- The inequities that our “all or nothing†dependency on Medicaid services

has created – from state to state, county to county, family to family, person

to person – is a travesty. There is so little rhyme or reason in who is

supported, and who is not;

- The families who simply want to see their young children access a quality

inclusive education with their peers yet have little to no support from the

schools;

- The self advocates who live and breathe the values of self-determination and

interdependence, but see service systems that don’t support those values, and

hide behind the mantra of “choice†in order to protect the system, not

individual rights;

- The adults with significant disabilities , using alternative and augmentative

communication devices, who have moved out of institutions into their own homes,

established micro-enterprises, and are directing their own supports – and what

a difference it has made in the quality of their lives.

- And, the young adults with intellectual and developmental disabilities who are

currently working in competitive, integrated employment situations that not only

give them the power that comes with earning one’s own money and the

independence that comes with less reliance on the service system, but also the

joy, pride, and friendships that come from meaningful work in welcoming

organizations.