Merry Christmas!!!!

Good Morning All and Merry Cristmas!!!! Love Sean

Additional Birthday /Christmas ideas

Sean needs:

- Pajama bottoms
-S/S colored t-shirts

He also told me he'd like a radio

Happy Thanksgiving!!!!!

love,
 Sean

Sean's Birthday and Christmas Gift Ideas

A number of you have asked what does Sean need or want. I promised to supply a list of items he needs or wants. So here it goes.

Sean has grown out of his older stuff. He's gotten taller and things all look like they shrunk.

So he can use the following clothes item:
-Elastic waste winter pants men's medium
-Men's medium tops short or long sleeve

Movies
-Turbo (he has me rent this all the time)
-also likes Terminator 2
-and Fast and Furious


Other things he likes
-Bingo - need to be a picture or sign language version. Needs to be big enough to use poker size chips and sticky tack to hold chips in place.
-See it and Sign it game - would help staff and roommates learn sign language (Amazon has it)
- I Spy or Look and Find books
- Foam puzzles - will work on them for a while. Saw a CARs floor mat puzzle on amazon.
-Mellisa & Doug Peel and Press sticker by number pictures - we did the space mission one. He loved it. The Mosaics and stained glass are too hard but there is a dinosaur dusk and safari one that he can accomplish easily.

And of course he still loves McDonalds gift cards (loves his large vanilla shake).
He is also saving money to go to Monster Jam again this year. That was such an event for him.

All of the above are just ideas. Sean always likes anything he gets.

Save the date: Seans 2015 Christmas

Mark your calendar come see me (Sean) perform.

CHRISTMAS PROGRAM

Dec. 11, 6:30 p.m.

Meet us in the College Church Sanctuary to celebrate the newborn King with music and drama. Cookie and punch reception follows. 

Invite your family, friends and neighbors. Hope to see you there.

Qtrly Meeting of Seans life Microboard

Great meeting today. Will post later the date of Sean's Christmas Show and any specific needs for birthday and Christmas gifts. Sean sends greetings to all.

Please Pray that Sean CILA gets funded!

Sean's CILA funding is in jeapordy. Please pray that funding is reinstated. See newsletter below. Sean's agency is Individual Advocacy Group.Please take a moment to write your state legislatures and the governor.

 

McMANUS CONSULTING

DISABILITY SERVICES

Contact: 847.256.0456, mcmanus06@comcast.net, or Facebook

ED's NEWSLETTER
No. 47   ........ Aug. 7, 2015
Special Edition


LAWYERS: STATE MUST PAY PROVIDERS FOR ALL PEOPLE WITH DISABILITIES . . .

The Plaintiffs and intervenors in the Ligas Consent Decree accused the State of Illinois late Thursday of flagrantly disregarding the rights of more than 10,000 people with developmental disabilities, and they urged the federal court to order the state to issue Medicaid payments to providers immediately.

Their motion, obtained by McManus Consulting, seeks payments not just for members of the Ligas class but for non-class members as well.

Earlier in the week, attorneys for the state appeared before Judge Joan Lefkow in a case involving Medicaid payments for children and made oral promises to the judge to begin making all Medicaid payments.  But the state failed to follow this up with any statement in writing to clarify their intentions, prompting the Ligas lawyers to file their motion.

Residents of CILAs and ICFDDs "are in immediate peril," according to the motion.  "As private providers inevitably reduce or cease their operations, the state will likely have no other option but to place individuals in State Operated Developmental Centers."  The state's disregard of the court's orders and federal statutes is "tantamount to placing the Illinois Constitution above federal law, in violation of the Supremacy Clause of the United States Constitution."

The motion was filed by Equip for Equality and the Roger Baldwin Foundation of ACLU, representing Ligas plaintiffs, and attorney William Choslovsky, representing residents of intermediate care facilities who are intervenors in the case.  They requested a hearing next Tuesday before Judge Sharon Johnson Coleman. 

Joining in the request was Ligas Court Monitor Ronnie Cohn, who filed an affidavit pointing out that most providers are completely reliant on state funding.  "These providers literally live from payment to payment and have no ability to survive even a short termination or reduction of funding," she said.

PROVIDERS SAY THEY ARE ON THE VERGE OF CLOSING . . .

Affidavits also were submitted by Charlene Bennett of Individual Advocacy Group, Romeoville; Mary Beth Hepp, Helping Hand Center, Countryside; Jessica Rosales, Progressive Housing, Olympia Fields; James A. Keller, Keltech Management Co., Anna; Karen Donovan, Futures Unlimited, Pontiac; Krystal L. Gruenfelder, Parents and Friends of the Specialized Living Center, Swansea; John Huelskamp, Community Link, Breese; and Michael S. Poe, ARC Community Support Systems, Teutopolis.

Rosales said Progressive, which provides residential services to 244 people, has less than 30 days of cash on hand and has maxed out a $750,000 line of credit.  They will be forced to close and will default on $12.6 million in revenue bonds.  Bennett said IAG has 57 CILAs and "unless some dramatic reimbursement arrangements occur soon,"  they will be unable to meet their obligations.  Hepp said Helping Hand serves 80 persons in CILAs, including 17 Ligas class members, but will not be able to operate the CILAs with funding for only Ligas class members.

The motion asks for enforcement of both the Ligas decree and an order that Judge Coleman issued June 30, directing the comptroller to make all payments to providers.  It says on July 23 the state sent a letter to providers informing them that payments would be made only for Ligas class members, "in complete disregard" of the decree and the order. 

The lawyers called the letter seriously misleading.  "Through this letter, the state attempts to transform the agreed order into something it's not--an order which requires the comptroller to make only some payments and which allows the state to pick and choose which payments the comptroller should make."

"The state's disruption of funding to service providers impermissibly shifts from the state to the providers the obligation to provide funding to people with developmental disabilities. . . .  Funding through the state, though at a rate among the lowest in the nation, is the only means by which providers can pay their employees and pay for housing, food, nursing care, therapy and the other essential needs of the individuals they serve."

The lawyers said it is a violation of the decree to provide funding only for class members.  "As a specific example, Stanley Ligas, one of the named plaintiffs, lives in a four-person CILA (run by IAG) with three roommates he chose, none of whom are class members.  With funding only for Mr. Ligas, this CILA home and the supports necessary to maintain Mr. Ligas' life in the community cannot be sustained."

-0-

McManus Consulting was founded in 2011 by Ed McManus, who worked for the Division of Developmental Disabilities for many years as an attorney, coordinator of the Home-Based Program, and facilitator of the North Suburban Network, and prior to that as a Chicago Tribune reporter/editor in Springfield and Chicago.  We have provided a variety of consulting services to a total of 47 agencies--staff training on how the DD system works, hands-on assistance on specific issues, and consultation by phone on a retainer basis when questions arise about the system.  We have also recently begun to provide formal consultation to families as well as informal info by phone.

Ed's Newsletter is published approximately once a month.  Its publication is made possible by the generous support of 22 organizations that are currently on retainer for phone consultations:  Active Visions, Avenues to Independence, Clearbrook, Community Alternatives Unlimited, Countryside Assn., CTF Illinois, Douglas Center, Glenkirk, Helping Hand Center, Individual Advocacy Group, Lambs Farm, Leeda Services, Little City, Orchard Village, Progressive Careers & Housing, Ray Graham Assn., Riverside Foundation, Shore Community Services, Southwest Community Services, Encompass/Jewish Child & Family Services, Trinity Services and UCP Seguin.

Great microboard meeting to day. Lots of changes in Sean's housing and goals. Please note Sean's new address is 24 Aldon Rd  Montgomery, IL. Sean loves to get mail from family and friends.

Way to go Nike

Check out these new Nike Shoes.

My birthday's December 1.

SEAN

July 17, 215

Hi All, At mom's this weekend. Looking forward to seeing everyone at my microboard meeting tomorrow.

URGENT - we need your help - DO NOT IGNORE

Please read the below letter Mary Ann received from Individual Advocacy Group - Sean's support is at risk.  The state of Illinois has not passed a budget  for providers to continue to provide services past June 30, 2015.

June 19, 2015

Dear Ms. Braasch,

We are writing you to seek your immediate help on a matter that has reached a level of crisis for IAG and the individuals it serves. The State has not passed a budget for the next fiscal year beginning July 1.  No new contracts have been issued by the State that authorizes IAG and other providers to continue to provide services and get paid for services provided after June 30. 2015, Even worse. no information is forthcoming as  to when a new budget will be passed.

PLEASE DO NOT IGNORE THE SERIOUSNESS OF THIS SITUATION !! !!!!!!! !!!
Please take the following action now!!

1. Contact the Governor and your legislators and express youroutrage.  Please do not allow them to hurt your loved ones!!
2. Please share your concerns with your family, friends and business associates.  Ask them to express their outrage to the Governor and elected legislators about what is happening to the people with disabilities who you love and care for.
3. Utilize all resources available to you to get out the message about what is happening in Illinois.  We should not bepunished for the mess in Springfield.

IAG can only borrow so much money to keep going.  Please help now.

Thank you,

Dr. Charlene Bennett

Dr. David Brooks

Individual Advocacy Group
I289 Windhom Porkwoy
Romeoville, lL 60446
T: (ó30) 759-0201
F: (ó30) 759-1005

2015 Walk Now for Autism Seaks

Great Day for the 2015 Walk Now for Autism Speaks!  Had a little rain but not enough to stop us from walking.

On our way to Soldier Field!!!

Mom and I

Barb  and I

At Soldier Field waiting for the walk to start.

Smile Dad your on camera.

Can we go there?

Don't worry Sean 
I'm not in the picture!

 

Let's go already!!!

Are we done yet?

Come on I see the finish line. 
Lets finish this.

Now do we get sliders!!!

THANKS to all that helped me surpass my goal. 

I raised $1061.00 for Autism Speaks and my team raised over $1,200.00. 

WAY TO GO TEAM!!!! 

Getting psyched for the Walk for Autism tomorrow at Soldier's Field.

Thanks to all that supported the team

New address for Sean's Blog

New address is http://Blog.Seanslife.org please take a moment to update your bookmark. Also follow us on Twitter @SeansLifeOrg

Watch "On The Brink" April 12th @ 6Central

NBC’S DATELINE INVESTIGATES AUTISM’S ‘AGING OUT’ CRISIS IN “ON THE BRINK”

Kate Snow Shares Powerful Stories Of Young Adults Living With Autism And Their Families’ Desperate Search for Specialized Support
Dateline’s “On the Brink” Airs Sunday, April 12 at 7pm/6c
NEW YORK – April 9, 2015 – On Sunday, April 12 at 7pm/6c, NBC’s Dateline will air “On the Brink,” a powerful new report, three years in the making, that puts a spotlight on autism’s ‘aging out’ crisis. Over the next ten years, an estimated half a million young people with autism will turn 21 and 'age out' -- losing their eligibility for help through the education system. The stability and structure they have had nearly their whole lives will end, and there’s no equivalent support system to take over. “On the Brink” takes an unprecedented look at the lives of young adults with autism and the extraordinary measures parents take to provide their children with specialized services and a better future.
Over a three-year period, Dateline chronicles the raw and emotional journeys of two New York-based young adults with autism and their families, as they transition from graduation to adulthood and make a leap towards an uncertain future. NBC News National Correspondent Kate Snow interviews two mothers who devote their lives to caring for their sons and helping them find a voice. Snow shares their heartbreaking stories and the tremendous challenges of navigating a broken system of programs that will allow their sons to progress in life. “On the Brink” documents both families’ ongoing fight to help their children and revolutionize the way autism is perceived in the U.S.
“We spent countless hours with these two families for over three years and it truly was an eye-opening experience,” said Snow. “It’s one thing to know that services end for people when they turn 21, and it’s another to see it play out. We are grateful that both families allowed us into their private lives, so we are able to share their compelling stories and shine a much-needed spotlight on this important issue.”
Snow also speaks about concerns surrounding the ‘aging out’ process with Sharon Lewis, Senior Advisor on Disability Policy to the U.S. Secretary of Health and Human Services, and Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, a non-profit organization devoted to studying the issues facing adults with autism.
Watch a preview of “On the Brink” here: http://www.nbcnews.com/dateline/preview-brink-n338706

CNN - Picking on Society's Most Vulnerable

Please take a moment to read this.

http://www.cnn.com/2015/03/18/opinions/perry-disability-cuts/index.html 

[IPADDUnite] CALLS NEEDED ASAP PLEASE

FYI and please follow your conscience in acting or not.   Calls need to to happen today or as soon as possible if this matters to you.  

Reliable sources are telling us that House leadership in Springfield has put across-the-board Medicaid cuts of 2.5% on the bargaining table as a way to fill the budget hole between now and July 1, 2015.  That means Home Based Services, CILAs, and ANY service or program funded through Medicaid would likely not receive payments for the rest of this fiscal year as Springfield would make the reduction retroactive to July 2014.  What happens after July 1st is unknown.  This move is only to fill the budget gap between now and July 1. 

We need to tell our legislators TAKE 2.5% MEDICAID CUTS OFF THE BARGAINING TABLE NOW.  FIND ANOTHER WAY TO PLUG THE BUDGET HOLE.

Link to Lookup Your State Legislator is http://www.elections.il.gov/DistrictLocator/DistrictOfficialSearchByAddress.aspx

FYI,

Laurie and Ellen

Movie time

It a great day for a Fast and Furious marathon.and a McDonald's milkshake.

Saturday bowling

Had two strikes at bowing today. Bowled a 118.

Monster Jam Feb 2015

Sean had a great time at Monster Jam. He loved it!!!!

Donut Competition

Monster Jam

Wheelie competition

From Sean

Really excited. Can't sleep.

Ready to Rumble!!!

Excited to head to Monster Jam tomorrow.

Chillin!!

Just chillin and watching Batman with mom.

First Microboard meeting of 2015

Productive meeting this morning. Six people in attendance!
Enjoy the sunshine today.

Seans Life meeting today. Went good