Monday, March 31, 2008

State of the States- IL

FYI-

FROM THE STATE OF THE STATES IN DEVELOPMENTAL DISABILITIES (2008)

Distributed in collaboration with The American Association on
Intellectual & Developmental Disabilities (AAIDD)

{The complete 309 document is available for purchase from AAIDD
https://www.cu.edu/ColemanInstitute/stateofthestates/}

Supported in part by the
United States Department of Health & Family Services

ILLINOIS
Ranks 51st (50th not including D.C.) in persons with developmental
disabilities in out-of-home settings residing in settings of 6 or
fewer. (Page 18, Table 4)
Ranks 51st (50th not including D.C.) in utilization rate by
individuals with developmental disabilities in settings for six or
fewer. (Page 19, Table 5)
Ranks 47th (46th not including D.C.) in the home and community based
services (HCBS) waiver spending per capita. (Page 26, Table 7)
Ranks 44th in percentage of individuals with developmental
disabilities in supported or competitive employment. Page 4, Table 11
Ranks 44th in the number of residents in State operated institutions.
Page 56, Table 16
Ranks 43rd in fiscal effort – spending in the community. Page 59, Table 18
Ranks 41st in spending for supported living and personal assistance.
Page 37, Table 10
Ranks 37th in spending for community services. Page 8, Table 3
Ranks 26th of the 31 States receiving "Money Follows the Person
Grants", in the percentage of current institutional residents (16+)
proposed to be transitioned to small community settings. Page 30,
Table 9
Ranks 9th in fiscal effort – spending on institutions. Page 59, Table 18
Ranks 6th in estimated number of individuals with developmental
disabilities living with caregivers 60 years and older. Page 62,
Table 19
Community Annual Cost of Care in ICF/DD (16+ persons) is 39% of cost
in State Operated Institution. Page 21, Table 6
Community Annual Cost of Care in ICF/DD (Under 16 persons) is 33% of
cost in State Operated Institution. Page 21, Table 6
Community Annual Cost of Care in Group Homes of under 6 is 16% of cost
in State Operated Institution. Page 21, Table 6


Courtesy of Brian Rubin


--
--
-John Kramer

Sunday, March 30, 2008

Catch Nora on the Radio

Good afternoon everyone-

In case you missed it, Nora was on Disability Beat (a radio show out of Champaign).  It’s very good!

http://www.disabilitybeat.com/MP3s/norahandler.mp3

Thanks Nora!

 

Best,

--
-John Kramer

 

Friday, March 28, 2008

National Conversation on Advising Self-Advocacy Groups

PLEASE DO NOT RESPOND TO THIS EMAIL.  If you’d like to contact us, visit our website www.theriotrocks.org and click on “Send us your comments.”

Greetings Readers!

This is your last chance to sign up for our April 7th National Conversation on Advising Self-Advocacy Groups teleconference!  The deadline for our April teleconference is March 31st!  Though you will still be able to sign up for our May 5th and June 2nd teleconferences after March 31st.

The self-advocacy movement has grown stronger over the years and is here to stay.  Success, though, often depends on self-advocates getting the support they need.  This support is offered by individuals called “advisors.”  We understand that advising a self-advocacy group is not always easy.  Advisors want to be helpful.  But sometimes advisors give too much help, or too little.  And sometimes advisors don’t give the right kind of help at all.  Anybody who advises a self-advocacy group understands how rewarding it can be…  and how hard!

So let’s talk about it!  We are hosting three teleconferences on advising self-advocacy groups:  April 7, 2008 – May 5, 2008 – June 2, 2008.  All will begin at 3pm ET and run for approximately 90 minutes each.

Each teleconference will include a 60 minute panel presentation and a 30 minute Question and Answer discussion.  The panel participants will include advisors and self-advocates.  We will learn a lot from these participants.  Scroll down to read about the topics that will be discussed during each session.

The registration fee will be $25 per teleconference for ONE phone line.  If you use a speaker phone you can gather people around and listen together!  Additional lines will be $25 each.

If you register for all three teleconferences, you will pay only $20 per teleconference or $60 total!  Additional lines will also be $20 each.  So, it pays to register for all three!

To register for these teleconferences you can go to our website at www.theriotrocks.org and follow the link.

Or you can download the registration form directly here:  http://www.hsri.org/leaders/theriot/riot-teleconf-registration.pdf

For each session, the registration deadline is one week prior to the scheduled teleconference.  Don’t miss the cut-off!

Come join us for the first National Conversation on Advising Self-Advocacy Groups!  Register Now!!

The topics we will cover during each session are described below:

Teleconference #1:  The Nuts and Bolts of the Self-Advocacy Movement
Presenters:  Chester Finn, Gordon Fletcher and Patricia Jones
Lead Moderator:  Julie Petty
Moderators:  John Agosta, Bill Worrell
April 7, 2008 – 90 minutes (3pm ET)
Registration Deadline:  March 31, 2008

1.      What is the self-advocacy movement?
2.      What is the self-advocate’s role in the movement?
3.      What is the advisor’s role in the movement?
4.      What are the goals?
5.      What are you proud of?
6.      What do you worry about?
7.      What help do you need to be successful?
8.      What help don’t you need to be successful?

Teleconference #2:  The Advisor – Coach, Guide or Doer?
Presenters:  Janet Hunt, Aimee Morry and Carol Utterback.
Lead Moderator:  Julie Petty
Moderators:  John Agosta, Bill Worrell
May 5, 2008 – 90 minutes (3pm ET)
Registration Deadline:  April 28, 2008

1.      What task are advisors asked to do?  Styles, functions, stage of group evolution.
2.      What are the biggest lessons we have learned?
3.      What are the biggest challenges you have experienced?
4.      What do you worry about when you think about things?
5.      Relationship between person’s role as an advisor and their real life roles – conflicts?

Teleconference #3:  Growing with the Self-Advocacy Movement
Presenters:  Michelle Reynolds and Bill Worrell.
Lead Moderator:  Julie Petty
Moderators:  John Agosta, Reena Wagle
June 2, 2008 – 90 minutes (3pm ET)
Registration Deadline:  May 26, 2008

1.      The evolving relationship between self-advocates and their advisors.
2.      What support do advisors need to do their job well?
3.      Indicators of a good advisor – what are they?

Warm regards,
The Riot! Staff

To prevent mailbox filters from deleting mailings from The Riot!, add riotlist@riot.hsri.org to your address book.

If you received this e-mail, you are already on The Riot! subscription list.  You will receive a notice each time a new issue of The Riot! is posted on our website.  To unsubscribe (or remove yourself) from the list, please go to http://www.theriotrocks.org.  Click on “unsubscribe” to remove your email address from our list.  To subscribe (or add yourself) to The Riot! email list, click on “Subscribe to The Riot!”

Contact us: The Riot! at HSRI, 7420 SW Bridgeport Road # 210 Portland, OR 97224
Phone: 503-924-3783 ext 10 ~ fax: 503-924-3789 ~ email: theriot@hsri.org

Job Opportunity! Enthusiastic Advocate Desired!!

Job Opportunity! Enthusiastic Advocate Desired!!

The Family Support Network is seeking to fill the position of “Chicagoland Advocacy Coordinator”.

This position is designed to be part-time, working about 20 flexible hours a week from a home

office.

Applications are now being taken. Our new Chicagoland Advocacy Coordinator must be an

energetic, creative person committed to the philosophy of Family Support.

He or she must also:

Be fluent in both English and Spanish

Have computer skills

Be a self-motivator

Be well organized

Be able to work unsupervised

Be able to keep confidences

Be diplomatic

Be able to listen to others with patience and empathy

Be able to speak in front of groups

Be able to travel easily around the Greater Chicago Metropolitan area.

Be able to contribute written articles to the FSN Newsletter or similar publications.

Resumes may be submitted to the FSN at 5739 W. Martindale Lane, Peoria, IL 61615, by email

at fsn@familysupportnetwork.org, or by fax at 309-693-0490. A complete job

description is available by e-mail or by calling 309-693-8981.

 

Supporting Illinois Brothers and Sisters Friday Update

Happy Friday everyone-

 

I just wanted to update you on a few things that have been going on for S.I.B.S.  We’ve been actively trying to promote our presence on the web and make it easier than ever for siblings to connect with each other in IL.  In this election year, we need to find our voice as siblings and get informed on policy issues that affect us and our siblings.  To do this, we are looking to make networking for siblings in Illinois easier.  A few of the things we have been working on to accomplish this goal are-

 

1.      We’ve started Facebook and Myspace groups.  If you are on either of these and would like to join, please contact me and I would be happy to add you.

2.      We also started Google groups and Blogger (in addition to AdultSibsNet Yahoo Group) to make it easier than ever to find out past, current, and future events for siblings in Illinois.  The links to these groups are available on all three (Yahoo, Google, and Blogger).  We believe that we need to still have “real world” meetings and hope that we can use some of these online groups to help arrange meetings in the coming months.  We are also planning on starting a Sibling Community calendar of events that siblings might want to attend.

3.      Please check out our website at http://www.sibsnetwork.org/ and http://sibsnetwork.blogspot.com/ for some additional topics and resources that siblings often find useful.  On the both sites you will find information on future planning, where you can connect with siblings in IL, and other miscellaneous links about siblings.

4.      We’re also working on the finishing touches of becoming a nonprofit organization for siblings in IL.  We’re waiting just a bit on the paperwork from Uncle Sam, but we should be official later this spring.  Things will pick up more once this happens.

5.      We’re currently looking for more people to get involved.  We need you! If you are interested, please contact Tara Koseniak at tarasibsnet@yahoo.com or tara@sibsnetwork.org

6.      What else would work for you?  Please feel free to send any suggestions on what you feel S.I.B.S might want to do in the future.

7.      Please forward this message to anyone you think might be interested.

 

All the best and have a wonderful weekend,

 

-John Kramer

Vice President, S.I.B.S

 

Tuesday, March 25, 2008

Your Tax Dollars At Work!

http://movingrightalong.typepad.com/moving_right_along/2008/03/your-tax-dollar.html

Your Tax Dollars At Work!

Love Thursday (which has been resurrected by Shutter Sister; thank
you, SS!) returns to Moving Right Along this week with a bang. A huge
ringing bang.

Look at the gift I have just been given. Well, maybe don't look if
you get icked out by such things. On the other hand, if you enjoy
looking at such things, click to enlarge by all means! It's a little
blurry, though. It's hard to take pictures of the back of your own
head even under the most ordinary circumstances.
Stapled incision from craniotomy.

Isn't it beautiful? It's one of the most beautiful gifts I have ever
been given. Actually, it's a lot of gifts, from a lot of people, and
it's going to take me quite some time to list them all out for you.
It may take me years. For today, though, in case the beauty is not
immediately obvious to you, let me just begin to explain.

One week ago today, I was given free brain surgery with all the
trimmings by a genuinely world-class team of kind and compassionate --
and highly specialized -- neurosurgical experts, courtesy of the
Commonwealth of Massachusetts. I had come to the emergency room the
week before that highly altered and with a two-month-old headache that
just wouldn't quit. Turns out I had a brain tumor the size of a golf
ball.

Miraculous. I just showed up needing this insane amount of quite
expensive, complicated help, and you gave it to me, freely and
graciously, with exactly the same level of service and compassion I
would have gotten had I been the child of a foreign potentate brought
in on a private jet. (And I know this for a fact because I have
worked in local hospitals and personally served children of foreign
potentates. None received better care or more deference than I have
enjoyed in the last three weeks.)

So. Thank you, Massachusetts. Thanks to you and your subsidized
health care for the impecunious within our borders, I can read and
write today. This is especially impressive when you realize that I
could do neither one a little over two weeks ago.

Like most people, I have done nothing particular to deserve your help.
Like most people, I have also done nothing to deserve a brain tumor.
This stuff just happens to people, all kinds of people, all the time.

Like many people, I could never afford insurance to cover it. Never.
Even with the best private insurance I ever had, the amounts not
covered would have devastated me financially. And the confusing
paperwork and conflicting stories from the insurance company, plus the
collection calls from all the service providers'
automatically-summoned-after-X-number-of-days bill collectors would
have started within weeks of my surgery. Even with every responsible
measure of a responsible person in place to mitigate the fallout in
just such an event, this is how it usually goes for many many people,
maybe even most in this country, when something this big just happens
to them through no fault of their own.

Many of us have long been arguing that helping each other is exactly
what our collective resources as humans are for. Helping each other.
Not killing each other or trying to quantify each other's monetary
value. Thank you so much, Massachusetts, for being part of this
country that agrees.

So how 'bout it, rest of America?

So I'll bet you didn't realize this, but the whole argument about
socialized medicine? It boils down to love. Do you love America?
Great. Now do you love what America is made of, Americans? Do you
really? Well, how much?

Do we love this country and each other enough to figure out a way for
every single person in America to have what has just been given to me?
Or are we too busy judging and measuring and lying to each other
about what things really cost to make this kind of possibility a
reality for every single person?

Every single person deserves this level of help and service. Every
single one. I only got it because of luck, finding the bad thing at
the right time in the right place with an amazing surgeon and his team
just happening to be available to me right at this moment, strictly
the luck of the draw.

Oh, and because I live in Massachusetts.

In Massachusetts, we are often rude and cold in demeanor, careless of
the environment, and even atrocious drivers. You know what else we
do, though? Bottom line, we love one another enough individually and
conceptually to put our money where our politics, philosophies, and
religions are and really take care of each other, or at least to try.
Yes, if you live somewhere else in the country, it is very likely that
we pay higher taxes than you. Nobody likes paying taxes. But nobody
here likes people to die of treatable and preventable medical
conditions.*

As one who's been on the receiving end in such a big way this time, I
cannot express my gratitude. Thank you so much, Massachusetts, for
the amazing, beautiful gift.

I love you, too.

__________
* I don't pay taxes myself right now, personally, because I don't make
enough money at the moment, but I have, too, for many many years, and
barring catastrophe will again -- because I'm probably going to live.
Because my fellow citizens of the Commonwealth paid for it. Even
without the love, can you see purely economically how much better this
works than just telling people to "sink or swim," "you get what you
earn," and "those are the breaks"? Do you see? Even if you can't
feel the love, surely you can see the pragmatism? More healthy
citizens = bigger tax base. So simple.

Dare I say it seems like a no-brainer?


---

Friday, March 21, 2008

Future Planning Event- March 28th

Date: 3/28/2008

Time: 9:30:00 AM

Presented by The Arc of Illinois and hosted by Blue Cap, this workshop
will address the unique needs that families have in planning for the
financial and legal future of their relative with a developmental
disability. Topics will include: Negotiating the Social Security Maze;
Preserving Eligibility for Government Benefits through Proper Estate
Planning; Special Needs Trusts; Guardianship and Less Restrictive
Alternatives-The Implications for Consent; Health Care Proxies
(Advance Directives); and Selecting a Knowledgeable Attorney. About
the Presenter: Terrie has been an advocate for persons with
disabilities for over 30 years. In addition to being a certified
teacher, licensed social worker and graduate of the DePaul University
College of Law, she is the parent of an adult daughter with a
disability. Her experiences include work in the area of in-service
training of families, special educators and other professionals. She
specializes in probate and estate planning for people with
disabilities.

For event info go to:
http://www.thearcofil.org/secure/reveal/admin/uploads/events/VarnetBrochure2008z.pdf

-John

--
--
-John Kramer

John Kramer, M.A.
Supporting Siblings in Future Planning Project
Rehabilitation Research and Training Center on Aging with
Developmental Disabilities
University of Illinois at Chicago
1640 W. Roosevelt Rd.
Chicago, IL 60608
(312) 436-1839

March 29th seminar in Springfield




Spread the word to families in Central Illinois…

Presented by The Arc of Illinois and hosted by The Autism Program

 

Planning for Children & Adults with Special Needs for Today & Tomorrow!

Presented by Brian Rubin, J.D., Sherri Schneider, QMRP & Matt Cohen, J.D.

The Hope Institute for Children and Families

Learning Center Activity Room

15 East Hazel Dell Lane

Springfield, IL 62712

United States

217-525-8332

Date: 3/29/2008

Time: 9:00:00 AM

 

http://www.thearcofil.org/secure/reveal/admin/uploads/events/BrianRubinBrochureFY2008zzzz.pdf (Brochure)

http://www.thearcofil.org/secure/events/eventregistrations.asp?EID=429&member=0 (To Register on line)

 

This workshop will cover a number of topics including: Government Benefits, presented by Sherri Schneider, QMRP -The who, what, where, when, why and how of Government Benefits … SSI, SSDI,Medicaid, Medicare, HBWD, and related topics. Who and What is Your PAS/ISC Agent and Why Should You Care? - Presented by your local PAS Agency. Special Needs Estate Planning and Planning for When The Bus Stops Coming presented by Brian Rubin, J.D. - The who, what, where, when, why and how of Special Needs Estate Planning including: Special Needs Trusts, Guardianships & Alternatives, gifting by grandparents and extended family members, the impact of divorce and child support on government benefits, determining the appropriate amount to leave, planning for when school years are over … when the bus stops coming, new Children's Waiver for children under 18, navigating the maze of Adult Services (In-Home, Residential, Supported Employment, Sheltered Employment, Developmental Training), Letters of Intent or Guidance for Future Care Providers and Agency Staff, and many, many related topics. Special Education in Illinois, presented by Matt Cohen, J.D. - Special Education Law in Illinois: This session will present the key changes in procedures under the IDEA 2004 and highlight strategies for obtaining accommodations under the new Regulations.

 

For more information and or to register, contact Janet Donahue at the Arc of Illinois at 708-206-1930

 

 http://www.thearcofil.org/secure/reveal/admin/uploads/events/BrianRubinBrochureFY2008zzzz.pdf (Brochure)

http://www.thearcofil.org/secure/events/eventregistrations.asp?EID=429&member=0 (To Register on line)

 




--
--
-John Kramer

John Kramer, M.A.
Supporting Siblings in Future Planning Project
Rehabilitation Research and Training Center on Aging with Developmental Disabilities
University of Illinois at Chicago
1640 W. Roosevelt Rd.
Chicago, IL 60608
(312) 436-1839

Tuesday, March 18, 2008

Welcome to SIBSNetwork

Welcome all siblings that live in Illinois that have a brother or sister with a disability!

After the first Sibling Conference (Sibling Connections) hosted by UIC in 2004 I was inspired to get siblings connected in Illinois. On AdultSibsNet siblings can discuss what it was like growing up with a sib who has special needs. Here we seek and share information about local services. We also discuss ways to advocate for our brothers and sisters. If you are interested in learning about ways to advocate for your sibling or interested in planning for the future, AdultSibsNet is a good place to start. Many members of this group are not only siblings, but in the field of disabilities as well.

About every six weeks or so we try to schedule a time to get together so we can have an opportunity to meet and have fun. We also try to schedule an outing that our brothers and sisters can participate in. This part of the group is completely optional.


--
--
-John Kramer

Siblings By Topic

Followers