Save the Date! The 2nd Annual Sibling Leadership Network Meeting

SAVE THE DATE! The 2nd Annual Meeting of The Sibling Leadership Network

November 6-7, 2008 Columbus, Ohio
Marriott Airport Hotel

Connect with others who have a sibling with a disability--and share your knowledge and experience!


With presentations, workshops, and breakouts by:
• Jeff and Cindy Daly (directors of the film Where?s Molly)
• Dean Fadel (lobbyist extraordinaire)
• Tom Fish (OhioSIBS and OSU)
• Tamar Heller (University of Illinois, Chicago)
• Ann Kaiser (Vanderbilt)
• Katie Keiling (University of Illinois, Chicago)
• Stan Klein (member of Senator Barack Obama's Disability Task Force)
• John Kramer (University of Illinois, Chicago)
• Emily Marino (YAI)
• Don Meyer (The Sibling Support Project)
• Mike Wehmeyer (University of Kansas)
• and many others!

On topics including:
• Siblings and Self-Advocates Working Together for Policies that Benefit Everyone;
• Creating Community-Based Adult Sibling Programs;
• Sibshops and Other Considerations for Young Brothers and Sisters;
• Sibs' Role in Self-Determination;
• Senator Barack Obama's Disability Policy;
• Research on Sibling Concerns;
• For Better or Worse: Siblings' Influence on Choosing A Mate;
• Influencing Legislators;
• Spreading the Word about Sibling Issues and the Work of the Sibling Leadership Network!

Hosted by: The Nisonger Center at The Ohio State University, the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, The Sibling Support Project, and the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities

More details available in late July on www.siblingsupport.org !
Mark your calendar!!

www.siblingsupport.org

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H.R. 5873

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Please sign on in support of Family Leave Insurance Act!
 

Dear Friends,
Representatives Pete Stark, Carolyn Maloney, George Miller, and Lynn Woolsey have introduced a new, comprehensive paid leave program: H.R. 5873, The Family Leave Insurance Act of 2008. Please join us in supporting the bill by signing on to the letter of support. The legislation is similar to the bill introduced in the Senate last year by Senators Dodd and Stevens, but the House version offers expanded coverage and benefits.
We have drafted a letter in support of the bill and encourage all to sign on. Please email or call Steffany Stern to sign on to the letter (sstern@nationalpartnership.org or 202-238-4881). If you are interested in receiving more information on the differences between the House and Senate versions of the bill, please contact us.
Overview of the Family Leave Insurance Act:

* Provides up to 12 weeks of paid leave for workers who need time off to care for a new child, a seriously ill family member, or to recover from their own serious illness.
* Expands the definition of family to include domestic partners, grandparents, grandchildren, and siblings.
* Covers all employees who have paid into the system for at least six months; also covers part-time employees, defined as workers employed for at least 625 hours per year (or around 20 hours per week).
* Creates a "Family Leave Insurance Fund," funded by premiums paid by both employers and workers, equal to 0.2% of each worker's earnings.
* Benefits are progressively tiered based on income:

* 100% of weekly earnings to $20,000
* 75% of weekly earnings to $30,000
* 55% of weekly earnings for $30,001-$60,000
* 45% of weekly earnings for $60,001-$97,000

* Job protection provided for FMLA-eligible workers.
* Employers or states with equivalent or more generous benefits may opt out of the program.

We applaud our allies in the U.S. House of Representatives for their commitment to working families, and we look forward to working with all of you as we support their efforts in the upcoming months. 
Thanks,
Kate, Rachna, Sharyn, and Steffany
Work and Family Team
National Partnership for Women & Families
<http://www.nationalpartnership.org/site/PixelServer?j=eRgzLvzXtzkE8uxtiDl4-Q..>

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Barbara Walters - as a Sib

NEW YORK ‹ After three decades of keeping mum, Barbara Walters is disclosing
a past affair with married U.S. Senator Edward Brooke, whom she remembers as
"exciting" and "brilliant."

Appearing on "The Oprah Winfrey Show" scheduled to air Tuesday, Walters
shares details of her relationship with Brooke that lasted several years in
the 1970s, according to a transcript of the show provided to The Associated
Press.

A moderate Republican from Massachusetts who took office in 1967, Brooke was
the first African-American to be popularly elected to the Senate. Both he
and Walters knew that public knowledge of their affair could have ruined his
career as well as hers, Walters says.

At the time, the twice-divorced Walters was a rising star in TV news and
co-host of NBC's "Today" show, but would soon jump to ABC News, where she
has enjoyed unrivaled success. Her affair with Brooke, which never before
came to light, had ended before he lost his bid for a third term in 1978.

Brooke later divorced, and has since remarried. Calls to a listing for
Brooke in Miami by The Associated Press were not immediately returned
Thursday.

Walters is the guest of Oprah Winfrey to discuss her new memoir, "Audition,"
which covers her long career in television, as well as her off-camera life.
On "Oprah," Walters recounts a phone call from a friend who urged her to
stop seeing Brooke.

"He said, 'This is going to come out. This is going to ruin your career,'"
then reminded her that Brooke was up for re-election a year later. "'This is
going to ruin him. You've got to break this off.'"

Winfrey asks Walters if she was in love.

"I was certainly _ I don't know _ I was certainly infatuated."

"Infatuated."

"I was certainly involved," Walters says. "He was exciting. He was
brilliant. It was exciting times in Washington."

Also during the program, Walters chokes up while describing the struggles of
her older sister Jackie, who was mentally retarded. Walters confesses that,
as a child, she sometimes felt embarrassed by Jackie.

"She stuttered terribly. People made fun of her. People made fun of me,"
Walters says. "I didn't bring friends home. I felt terribly guilty because
she was very loving and I didn't always feel that way."

Jackie Walters died in 1985 of ovarian cancer.

"When I think of her, because she was beautiful and loving and all of that,
it makes me cry."

waiting for services

PLEASE HELP US OUT BY FORWARDING THIS EMAIL ON TO OTHER INTERESTED PERSONS
AND POSTING IT ON APPROPRIATE LISTSERVS (INCLUDING THIS NOTICE)

HUNDREDS OF THOUSANDS OF INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES ARE
WAITING FOR SERVICES

Hundreds of thousand of children and adults with developmental disabilities
are sitting at home with aging parents and guardians, losing school-taught
skills, while waiting for state and federal funding for services. Parents and
children are held “prisoner” in their current state of residence because to
move would require them to lose services or their place in a wait list, and
then have to start at the bottom in another state.

NOEWAIT – the National Organization to End the Waitlist, considers this a
disgrace. Parents and advocates from across the country are joining together
in a collaborative effort to bring national attention to waitlists and
service portability between states, and find national solutions.

Join with us as we develop coalitions among advocacy organizations and state
wait list campaigns in uniting our efforts through NOEWAIT to end waitlists
and gain portability of services.

Please see our website at
_http://www.noewait.net_ (http://www.noewait.net/)

We look forward to your response. Please email us at
_Noewait@Noewait.net_ (mailto:Noewait@Noewait.net) .

___ Yes, please place me on your NOEWAIT Email listserv. I want to keep
updated and learn more about solving this critical issue and how I can help.

Name: ______________________________

Preferred EMail address: ________________

Organization, if any: ____________________

State: _______________________________

Thank you.

Denver C. Fox, Ed.D.
Moderator, NOEWAIT
303 773 3890

http://members.aol.com/dnvrfox

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Worrying About All Services - Chicago N

 

Family Support Network Members:

It’s always so surprising to hear that you have been seriously misinterpreted or misunderstood.

And that is what I discovered today.

I learned today that “some folks” believe that I believe that the State of Illinois should increase enrollment in the Home-Based Support Services Programs at the expense of new enrollment in Community Integrated Living Arrangements (CILA). 

In other words, “they” think that I think that folks who are in need of funding for services in group homes should be pressured to accept Home-Based Support Services Programs when what they need are residential services or that people should be given Home-Based Support Services to the exclusion of people needing residential services.

AIYEEEEEE!!  They can’t be more wrong. That so breaks my heart. My son, Daniel, lives in a group home and receives CILA services! Mike and I simply cannot provide him what he needs in our family home. CILA services must be strong and available to all who need them…. before they are in crisis.

 

So I want to be clear. This is what I believe in and for which I advocate:

·         Families supporting children with disabilities in their homes should have desperately needed supports and services so their children can grow up to have vibrant, happy lives.

·         Adults with disabilities should be able to live the same vibrant, happy lives in their family homes with the same desperately needed supports and services, as long as that is their choice.

·         Adults with disabilities should be able to move to other community settings (such as group homes or their own apartments) while their families are strong and healthy enough to help them make that transition successfully.

·         Those community settings should be close to their family and friends.

·         The providers of those services should be compensated at for the real cost of quality services.

·         All those services should person directed allowing the individual to choose how and where they will receive them.

 

Service Plans should start with the dreams and goals of the person with a disability.

Only after the dreams, goals, strengths and challenges of the person with a disability have been addressed should the discussion begin about where that person should receive services.

Whether we want to admit it or not, services in Illinois today are based on where a person is “willing” to live. If their desire is to live at “home” with mom and dad, they can only a capped amount of funding through the Home-Based Support Services Programs. If they need more they have to be “willing” to move into a residential setting, often far from home. If they need even more than that, they often must be “willing” move into even MORE restrictive settings such as a State Operated Developmental Center.

Our system is seriously dehydrated. People’s lives have become tiny. They are forced to live often hours away from their loved ones. Our providers receive a fraction of the funding they need to do the quality job they want to do.

I say it is time to get mad and get mobilized, not divide ourselves for the conquering. NO ONE should receive services on the back of someone who is not, no matter what the community setting is.

We have to work on all of this at once.

 

We must remember that every time someone receives that magic “Award Letter”, thousands of others have not.

Let’s remember that PUNS tells us that there are almost 13,000 people in Illinois still needing services. (http://www.dhs.state.il.us/OneNetLibrary/27897/documents/DD%20Reports/Overall%20Summary%20of%20Support%20Needed.pdf)

No matter how we cut that pie there will be thousands of wonderful people still desperately needing services, no matter what the setting is.

 

We (and I mean YOU as well) have an INVESTMENT and an OBLIGATION to work for improved and increased services in every community setting.

Whether you or your loved one is already receiving services or not, we must work together to make the world the place we want for people with disabilities in Illinois.

 

What can you do today? Call you legislators today in support of SB 3022!

Identify your legislators at www.ilga.gov.

SB 3022 was the focus of our Rally at the Capitol last week. It supports the agendas of both the “Do the Right Thing Coalition” and the “No Place Like Home” Coalition. The press packet is online at Rally Day Press Packet.

 

And Tomorrow is our last “Listening Session” with Director Lilia Teninty. It’s in Mt. Vernon!

For all you downstaters who are always complaining that nothing comes to where you live, here it is your opportunity to tell Director Teninty how services are working for you. What works well? What doesn’t? Make some suggestions for improvements. Be there or be square!

April 23rd, 6:30pm, Mt. Vernon District 80 Primary Center, 401 North 30th Street, Mt. Vernon, IL

 

And an important Opportunity for all of us to comment:

Director Teninty has released documents on the new selection processes through PUNS. She needs your comments by May 30. You can e-mail them to .

.

We have them on our website. You can just click on the following links:

New PUNS Selection Information,

Community Emergency Criteria (Children)

Community Emergency Criteria (Adults)

 

I am so proud to know all of you and consider you my friends. I want to be clear that I consider good “family support” to include quality residential supports to all that need them and CLOSE to family and friends. That is the world for which we need to work.

 

Charlotte

 

 

FW: Worrying About All Services - Chicago N

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Sent - 9:47:27 PM on 4/22/2008

-John Kramer

 

Vice President

Supporting Illinois Brothers and Sisters

 

 

 

 

Arc & Corrected Date for Park Ridge Hearing

Leaders in The Arc:

The email I sent you yesterday on the Legislative Hearing on Autism in Park Ridge had the wrong day.  The hearing will be held Tuesday, April 22, 2008 not Monday as previously sent.  See the corrected memo that follows:

Tony

The Arc of Illinois

April 15, 2008

 

Leaders in The Arc:

 

Rep Rosemary Mulligan is holding a Legislative Hearing focusing on Autism, Tuesday, April 22, 7 to 9 pm, Park Ridge Public Works, 400 Busse Hwy, Park Ridge.

 

She will take testimony on issues related to the proposed state budget, education and transition issues, plus other items related to ASD and other related disabilities.  The format should be similar to the other budget hearings taking place throughout Illinois.  

 

If you could please forward this to other interested parties and let them know they can call her office if they are going to testify.  Her number is 847-297-6533. 

 

Tony Paulauski

The Arc of Illinois

708-206-1930

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The Arc of Illinois
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Homewood, IL 60430

Access Living Calendar

 

April 12, 12 p.m. to 2 p.m.
Disability Pride Parade Planning Meeting. This is your chance to get involved with the planning of the 5^th Anniversary Disability Pride Parade, scheduled for July 26, 2008. For more information, contact Janice at 312-640-2195 (voice), 312-640-2102 (TTY).

 

April 15, 10 a.m. to 12 p.m. Housing Support Group. This monthly meeting offers people with disabilities in search of accessible, affordable housing an opportunity to network and gather resources.  For information, contact Pearl at 312-640-2116 (voice), 312-640-2102 (TTY).

 

April 16, 1 p.m. to 3 p.m.
Deaf and Hard of Hearing Support Group. A monthly peer group for people who are Deaf and hard or hearing. For more information, contact Devon at (312) 640-2163(TTY), (800) 714-6834 (voice), or dwhitmore@accessliving.org.

 

April 16,
5:30 p.m. to 7:30 p.m.
D.U.D.E.S.: Disabilities United in Determination, Education and Strength is a monthly support group for young men with disabilities. For more information, contact Devon at (312) 640-2163 (TTY), (800) 714-6834 (voice) or dwhitmore@accessliving.org, or call Jose Ocampo at (312) 640-2144. 

 

April 17, 12 p.m. to 2 p.m. Cross Disability Support Group. Monthly Peer Group open to people of all ages with any type of disability. Contact Carrie at 312-640-2103 (voice) or 312-640-2102 (TTY).

 

April 18, 11 a.m. to 1 p.m. Renewing Vocational Opportunities for Consumers (ReVOC). ReVOC is a new group that includes people with disabilities organizing to improve Chicago's Vocational Rehabilitation Programs and employment opportunities for people with disabilities. For more information, call 312-640-2100 (voice) or 312-640-2102 (TTY).