from Tara Conley

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Re: Tara Conley

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Tara Conley




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Important information about develomental disability services in IL. Email not displaying correctly? View it in your browser. ED's Newsletter ED's NEWSLETTER No. 24    .........  Feb. 25, 2014   ED MCMANUS DEVELOPMENTAL DISABILITY CONSULTING 705 ELEVENTH STREET, UNIT 205 WILMETTE, ILLINOIS 60091 847.256.0456, mcmanus06 at comcast.net, facebook:EdMcManusDDC     WE'RE BACK!  Ellen and I returned Feb. 9 from our third annual one-month vacation, most of it on Maui.  Retirement is great!  We felt guilty as we kept hearing about the Chicago winter, but our daughter-in-law Debora said, "Guilty?  Why bother with that?  Feel lucky!  Feel happy!"  Thanks, Debora.   1115 AND MANAGED CARE:  LOSING SLEEP . . .   Wherever I go, people ask me, "What does the 1115 Waiver mean for us?  Is it good?  Is it bad?  And what about Managed Care?  Is it really going to happen?"   And I answer, "Who knows?"   Gov. Quinn is asking the federal government to allow Illinois to consolidate its nine Medicaid Waiver programs into one big program, called an 1115 Waiver (it's authorized by Section 1115 of the Social Security Act).   Three of those nine waivers serve people with intellectual and developmental disabilities.  But the proposal goes beyond disability services.  Quinn calls it a healthcare transformation program; it would bring in $1 billion a year in federal funds for five years "to modernize healthcare infrastructure and services and lower long-term costs," he says.   The governor's aides predict it will be great for the developmental disabilities system because it will allow much more flexibility in the delivery of services.  Skeptics say flexibility could allow an administration to change existing programs either positively or negatively.  And with an election coming up, we of course don't even know who will be governor for the next four years.  There are no real details available, and we probably won't know for many months or a year whether the feds are going to approve it or turn it down.   In the meantime, about all we can do is wait and see.    Then there's Managed Care.  We have been told that our CILA and Home-Based programs will be turned over to insurance companies, which will subcontract with our providers.  Maybe some time next year.  That sounds pretty bad.  Again, no details at all as to how this would affect the current system of services for people with disabilities.    The bottom line:  Like the 1115, it's worrisome, but we don't even know what it is we are actually worrying about.  My suggestion:  Take a deep breath, and then worry about something you have control over.  Like your golf swing.   A PUNS SELECTION COMING UP . . .   Ligas Court Monitor Tony Records says there will be another PUNS Adult Waiting List selection this spring.  Rumors fly.  I've heard it will be in March.  I heard it would be 500 people.  Then I heard 700.  Then I heard it will be all CILA.  (Normally, some people get letters offering them CILA services, with an alternative option of Home-Based, while others are offered just Home-Based.)  Last year the Division of DD said in February that there would be a selection in March, but for some reason it never happened until September.    Still no selections of children.   PUNS:  IT'S SO UN-TRANSPARENT! . . .   Families on the PUNS list are on the edge of their seats.  No one, including the PAS agencies and most Division staff, has a clue as to who will get a letter.  The Division insists it's no longer a lottery, but then what is it?   A family asks, does my son meet the criteria for crisis?  Or is he considered an emergency?  Or is he "critical"?  They all sound pretty bad to me, but they mean different things in our system.  If the Division finds you to be in crisis, you can get services right away.  If your PAS agency calls you an emergency, your chances of being selected from the list supposedly are enhanced.  If you're just "critical," well, then, you may have to wait awhile.   The Division says people who have been waiting the longest are prioritized.  Yet many people have been on the list for years and years, and they say they need services right away, which is supposed to be the definition of "emergency," but they are still waiting, and they don't understand why, and no one can give them an explanation.  Kinda sounds like a lottery to me.   There simply is no transparency.    Gov. Quinn and Director Casey:  A great many people would be very grateful if you would take steps to correct this situation.   The PUNS system was created by a consultant from Pennsylvania several years ago and adopted by Illinois.  She was hired last year to come back to Illinois to conduct "listening sessions" and to make recommendations for improvements in the system.  More than one person asked me, Why did the State hire the creator of the system, of all people, to critique it, instead of an independent person or agency?  I have nothing against the consultant, but I thought it was a valid question.    I attended a couple of the sessions and reported the comments of PAS agencies and parents in my newsletter, without using names.  And I got a call from a state official, complaining that the sessions were supposed to be confidential!  (I asked the official if she had read the Illinois Open Meetings Act.)   No word on what recommendations the consultant may have come up with.   Postscript:  Whenever I criticize the Division, I feel a little badly.  I have many longtime friends there, and I know their hearts are in the right place.  I hope my criticism is constructive.   GOOD NEWS FOR HOME-BASED PROGRAM PARENTS . . .   The Internal Revenue Service has announced a new policy that will exempt parents of adults in the Illinois Home-Based Program from payment of taxes on income that the parents receive for providing care.  This will be a huge benefit to parents who have declared themselves to be the personal support worker for their son or daughter and have been receiving income for their work and paying taxes on it up to now.  Several attorneys I have spoken to have confirmed this, although the Division of DD has not yet issued any advisory on it.  If you have questions about it, you should consult a lawyer or financial adviser.   The IRS issued a notice, http://www.irs.gov/irb/2014-4_IRB/ar06.html, on Jan. 3, changing its position on the tax treatment of Medicaid Waiver payments made to people who provide care to an individuals with a disability in the provider's home, even if they are related.  Previously the IRS had treated those payments as taxable income to the service provider; now it will treat them as exempt.   The companies that serve as fiscal agents for the Home-Based Program are continuing to withhold income tax on the payments, pending further guidance.  But I have been advised that recipients can treat the withheld amounts as if they were over-withheld, and they can seek a refund when they file their tax returns.  They can also file a claim for refunds of taxes paid in prior years, as long as the statute of limitations has not expired.   CLARIFYING A SUPREME COURT CASE . . .   There has been a lot of media coverage of a case that originated in Illinois, involving the Division of DD's Home-Based Program and the Division of Rehab Services' Home Services Program, which found its way to the U.S. Supreme Court.  The court heard oral arguments Jan. 21 and will issue an opinion sometime this spring.    A majority of the personal care workers in the DRS Home Services program voted in 2003 to be represented by a union in negotiations with the state, and in accordance with the Supreme Court's 1977 Abood decision, those who have not joined the union are required to pay a monthly fee because they are benefitting from the contract that the union negotiates.  The workers in the DDD Home-Based program in 2009 voted solidly against being represented, so there is no union involved in that program, although the plaintiffs fear there could conceivably be one at some point in the future if another vote of workers were to be taken.    Workers in both programs--most of whom are family members of the people being served--sued, challenging the state's right to force them to pay the fees.  The federal district court, upheld by the appellate court, found that the arguments of the DDD Home-Based workers were not ripe for judicial review because the workers had rejected representation.  The district court and appellate court upheld the requirement that non-union DRS Home Services workers pay the fee, so that's what is before the Supreme Court (as well as the issue of ripeness of the DDD Home-Based part of the suit).   The plaintiffs chose a well-known anti-union organization, the National Right to Work Legal Defense Foundation, to represent them.  Court observers believe the case may be decided on ideological grounds, and that if the conservative justices throw out Abood, it would be a major blow to public sector unions nationwide.  A good, objective description of the case and summary of the oral argument can be found on the Scotusblog website:  http://www.scotusblog.com/2014/01/argument-recap-public-employee-unionism-under-fire/   LETTERS, EMAILS, PHONE CALLS . . .   From a provider agency vice president, commenting on the DDD Case Management Initiative, which will enhance the role of PAS/ISC agencies (Dec. 18 issue):  "I have to be honest that I was not particularly pleased to hear that ISCs will be more involved than they already are.  While some of the Case Managers that we work with are great, others are not.  We have found that many are woefully disorganized (we wait months for reports and signatures on ISP approvals) and a few are not person-centered at all.  They tend to dominate meetings in the name of the individual served and are not collaborative.  It also does not help that there is very little hierarchy within the ISC we work with, so we never know where to go with complaints, and there is fear of retribution from the specific Case Manager on issues, or from the ISC in general, because they control referrals (despite the fact that 'officially' they do not). In addition, there has been at least one case where we did complain and absolutely nothing was done and the individual is still working there.  I feel that since that time the person has been even more difficult.  I’ve also heard Case Managers disparage our and other organizations to families during ISPs!  I understand they are supposed to be monitoring but I sometimes feel their behavior crosses the line to bullying. Anyway, that is just my two cents."   From a parent, commenting on one of the Initiative's "desired outcomes," that each person in CILA and Home-Based "will have a paying job if they want to work":  "Does that mean that all those individuals in workshops who are asking to have community jobs will be able to have someone help them find one?  How will that be paid for?  Around here, people are on a waiting list for 'job seekers' to try and find out what jobs they could apply for.  There is a list of those who would like to work in the community instead of the workshop.  Would this allow for part-time work in the community and part-time work in the workshop?  Or would it be one or the other?"  (This is one of those statements the Division makes--a "desired outcome."  It would cost a lot of money.  Some states are doing it, but Illinois is not yet one of them.)   PEOPLE . . .   Joy Decker, president and CEO of Orchard Village in Skokie, has been appointed executive director of Esperanza Community Services in Chicago.  I have had the pleasure of working with Joy for many years.  She has been at Orchard for 17 years, starting out as a case manager, then residential director, then vice president/programs, before becoming CEO in 2010.  Along the way, she has served as the North Suburban Network representative to the DDD Statewide Advisory Council.  Two vice presidents, Allison Stark and Marlene Hodges, will be co-presidents while the board conducts a search for a replacement for Joy.   Denise Rau has been hired by Ray Graham Association as director of their Specialized Living Center, Elmhurst Community Learning Center and Sunrise Courts.  Denise formerly was a vice president at Clearbrook.   Donna Frankfurter of Glenview has accepted the chairmanship of the Ligas Parent Advisory Committee.  Donna is a great choice.  She is the mom of Daniel, who recently moved into a Clearbrook CILA, thanks Ligas Consent Decree.   Missy Kickline, Toni Howard and Kimberly Johnson-Evans have been hired to work in the Ligas Family Advocate Program, to be run by the Arc and the Family Support Network with a grant from DDD.  Their job will be to contact families chosen through PUNS to assist them in identifying ways to utilize their funding.   SOME SURPRISING NEW WAIVER RULES . . .   New rules issued by the U.S. Centers for Medicare and Medicaid Services concerning the Home & Community Based Services Waiver, which is the federal funding source for Illinois' CILA and Home-Based programs, may result in some significant changes in the way provider agencies operate.  The rules are written to guarantee person-centered planning.  Attracting particular attention is language requiring residential providers to arrange for individuals to have a lease "or other legally enforceable agreement providing similar protections"; to allow individuals to control their own schedules, "including access to food at any time"; and to allow individuals to "have visitors at any time."  It's possible for the requirements to be modified under certain circumstances, but any modification "must be supported by a specific assessed need and justified in the person-centered service plan."   Each state receiving Medicaid Waiver dollars must submit a plan as to how it will guarantee that providers abide by the rules.  Among other things, the rule requires that all home and community based settings be fully integrated into the community; that individuals be given options when selecting a setting; and that they be offered choice regarding services and who provides them.  For residential settings, it requires that individuals have privacy in their unit, including lockable doors, choice of roommates and freedom to furnish or decorate their unit.  The rule also places greater emphasis on providing day services in integrated settings.   More details can be found at this website:  http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Home-and-Community-Based-Services/Home-and-Community-Based-Services.html.   BEFORE THE PUNS LETTER ARRIVES IN YOUR MAILBOX . . .   My good friend Laurie Jerue, who co-leads the wonderful IPADDUnite listserv on Yahoo with Ellen Bronfeld, is one of those moms who has been waiting--forever--for her 25-year-old daughter's name to be plucked from the PUNS database.  Laurie has put together a list of "Things to Think About" before the letter arrives.  (It refers to the letter from DHS offering CILA services, with an alternative option of Home-Based; some letters offer Home-Based only.)  Here is an abridged version of the list.  The full list is available on the website.  To learn more about IPADDUnite (Illinois Parents of Adults with Developmental Disabilities Unite), go to https://groups.yahoo.com/neo/groups/IPADDUnite/info.     1. How prepared is your child to move out of the family home?  What are their thoughts about it?    2. If both parents are involved in the decision, are your visions for the future in sync with one another?       3. How connected is your child to their current neighborhood?  How important will it be, to them, to maintain those connections?    4. What relationships would be important for your child to continue having after they move?    5. Do you know what agencies in your area provide CILA services?   Have you visited their group homes?  Do you understand there may be options to traditional CILA--In-Home, Host Family, Microboard?  Do you or your child have friends also looking for housing options, and do they want to try living together?   6. What are your options if your agency of choice has no openings?  Or if they say no?    7. Do you understand the financial end of having your child move into a CILA?  What happens to their SSI/SSDI payments?   8. What life skills are most important for your son or daughter to have prior to moving out of the family home?    COMING UP . . .   Mike Mayer of Mebane, N.C., senior partner of Community Resource Alliance and an expert on services for people with intellectual and developmental disabilities, will conduct a daylong workshop sponsored by The Arc in Tinley Park March 11:  "Making a Real Difference:  Implementing Best Practices in Person Centered Planning.  I'm going!  See: http://gallery.mailchimp.com/bcec73d19574f43e0b9ab00c1/files/Person_Centered_Planning_Brochure.pdf.   Autism Speaks is holding a fund-raising dinner, "An Evening with the Stars," March 2 at the Intercontinental O'Hare. Go to:  http://www.kintera.org/site/c.owL0KgN1LxH/b.4324647/k.BED9/Home.htm   OTHER STUFF . . .   The lawsuit challenging the closure of the Murray Developmental Center in Centralia drags on.  Judge Aspen held a three-day hearing in January on the Murray parents' request for a preliminary injunction against the state.  The parties will be filing briefs until April 4.  Then, sometime after, the judge will rule.   Kane County residents will vote March 18 on whether to authorize a modest property tax increase to benefit people with disabilities.  Go to:  http://www.showyoucarekane.com/.   There's a favorable ruling in a lawsuit on behalf of Medicaid-eligible Illinois children up to age 21 seeking diagnostic and treatment services to address behavioral, emotional or mental health disorders, including developmental disabilities.  Federal Judge John Tharp ruled that the suit can proceed as a class action.  Attorney Robert Farley says the state has failed to provide adequate services.   Did you know there is a website for college students with disabilities?  Go to: http://weconnectnow.wordpress.com/.   The Division of Rehab Services has cracked down on providers in their Home Services program.  When caregivers show up at the home of a program participant, they must use the participant's phone to call a toll-free number to check in, and then do the same when they leave.   Job Posting:  Clearbrook is accepting applications for the position of vice president of ICF/IDD services.  The job involves overseeing four residential programs and one day program.  Requirements:  bachelor's degree (master's preferred) in social services, five years of clinical and administrative experience, and supervisory experience.  Contact Robin Johnson in HR Department:  robinjohnson@clearbrook.org.   THE CONSULTING PRACTICE . . .   Number 39!  Southwest Community Services, based in Tinley Park, has become the 39th organization to contract with Ed McManus Consulting since the practice began two and a half years ago.  LeAn Taylor is the new executive director there.  LeAn and I have had a long working relationship during her years at Little City.  She has big plans for SCS, including starting a CILA program.   The Illinois Assn. of Microboards is holding a daylong Grassroots Housing Summit in Naperville March 29, and I am on the program.  I will be speaking about Host Family CILA, and specifically the Shared Living model, where an agencies hires staff to live with and care for two individuals with intellectual/developmental disabilities.  Go to: http://media.wix.com/ugd/4329bd_398dc35122644da2893af70855e39eff.pdf.  A similar event will be held March 22 in Edwardsville.   FEEDBACK . . .   Your feedback helps me produce a better newsletter.  Please send corrections, suggestions, opinions, praise, criticism, etc. to mcmanus06@comcast. net.  (I won't use your name without your OK.)   Follow on Twitter    Friend on Facebook    Forward to Friend  Copyright © 2014 Supporting Illinois Brothers and Sisters, All rights reserved. You are receiving this email because you opted in at our website, Sibsnetwork.org. Our mailing address is: Supporting Illinois Brothers and Sisters 3800 N Lake Shore Drive #3E Chicago, IL 60613 Add us to your address book unsubscribe from this list    update subscription preferences

come join us!

Use this area to offer a short teaser of your email's content. Text here will show in the preview area of some email clients. Is this email not displaying correctly? View it in your browser. Upcoming Sibling Events! Don't Miss Out! We are still looking for people to attend our upcoming events.  Please share with your networks.   We are targeting siblings of people with disabilities and their brothers and sisters with disabilities.  We would also love to have sib-in-laws attend as well.  Parents and other family members are also welcome.  More information is below and at this link: http://siblingleadership.org/get-involved/events/sibling-training-about-disability-policy/ Best, Katie Arnold _______________________ Katie Arnold, MS Director of Community Education Institute on Disability and Human Development University of Illinois at Chicago 1640 W. Roosevelt Rd, Rm#718 Chicago, IL 60608 (312) 996-1002 (312) 413-0453 TTY Sibling Training about Disability Policy The University of Illinois at Chicago is offering free training for siblings and their brothers and sisters with disabilities. People who participate in this training will:  • increase knowledge of disability policy  • share ideas on long term services and supports   • identify strategies to be agents of change   • receive a toolkit of strategies for civic engagement    Two trainings will be held on upcoming Saturdays, so come to the one that works best for you:  March 1st from 9:30am to 2:30pm at The University of Illinois at Chicago (1640 W. Roosevelt Rd., Chicago, IL) March 15th from 9:30am to 2:30pm at The Autism Program of Illinois (5520 South Sixth Street Road, Springfield, IL)   Participants will learn about:  •        Disability policy •        Advocacy strategies •        How to effectively share your story and create change   The training is FREE. Lunch will be provided.     To register for the either training, please contact Katie Arnold at: kkeiling@uic.edu or 312-996-1002   In addition, UIC is conducting research right before this training to gain your perspective on long term services and supports.  This will include a focus group discussion that will last up to 1 ½ hours. Your participation will provide important feedback that can potentially help guide, expand, and strengthen disability policy.  Your participation is voluntary and your responses will be kept confidential.  Friend on Facebook Follow on Twitter Forward to a Friend Adult Sibling Lunch Well maybe its still going to be winter but I can hope for warmer weather then -2.  Please join us for our first sibling gathering of the year at Potters Place 29 W Jefferson St, Naperville, Illinois 60540) in beautiful downtown Naperville. To register you must RSVP to Tara at tarasibsnet@gmail.com by Feb 27th. Looking forward to seeing you all there!! Tara Conley   Celebrate Differences Sibshops When: Sat, March 22, 10am – 12pm.... lunch served at noon Where: 5375 US RT 34 Ste 4 Oswego Il 60543  Description: Sibshops are lively, engaging celebrations of the many contributions made by brothers and sisters of kids with special needs. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. Sibshops are a spirited mix of fun games, new friends, and discussion activities.  For: 8-12 Lunch included. Fee is $5.00 per child. Limit is 10. Be sure to register early. Register by: 630-885-3006 info@celebratedifferences.org   Arc of IL Conference-with sibling speakers Where: Hilton Lisle/Naperville, Corporate West Drive, Lisle, IL, United States When: April 23 and 24th Come check out the sibling speakers as well as enjoy 2 days of great information for those here in IL. Check out the Arc of IL website for more info. www.thearcofil.org  follow on Twitter | friend on Facebook | forward to a friend  Copyright © 2014 Supporting Illinois Brothers and Sisters, All rights reserved. You are receiving this email because you opted in at our website, Sibsnetwork.org. Our mailing address is: Supporting Illinois Brothers and Sisters 3800 N Lake Shore Drive #3E Chicago, IL 60613 Add us to your address book  unsubscribe from this list | update subscription preferences

A New Website and A Free Resource Guide

The latest from S.I.B.S. Is this email not displaying correctly? View it in your browser. Donate Now » Join Our Facebook Group Forward To A Friend We are stronger together ... and we are proud to announce the launch of our brand-new website and free resource guide! Explore the new site » Dear friends and supporters, Happy 2014! The New Year has been a time of change and transformation for us. In fact, we recently created a brand-new website for S.I.B.S.! Hop on over and explore the new design, resources, updates, and more. S.I.B.S.' mission is to provide support to siblings of people with disabilities in Illinois by connecting them with information, networking opportunities, and resources in order to enhance the quality of life for their entire family. In keeping with this mission, we'd like to invite you to download your FREE copy of our new resource guide, Stronger Together! If doing so results in a 'blank' screen, be sure to check your pop-up/ad blocker/browser settings, as they may be preventing the necessary, "Do you want to download this file?" dialogue box from making an appearance! We’re siblings too, and we think no sibling should have to go it alone … especially not when there’s a wealth of help, information, and support just waiting to be accessed. With gratitude, The S.I.B.S. Leadership Team The Sibling Leadership Network S.I.B.S. is the official state chapter of the Sibling Leadership Network (SLN). Learn more about the SLN and its vital work.   Introducing ... The S.I.B.S. Board members! Meet our Leadership team.   Support S.I.B.S. Your generous gifts contribute to sibling gatherings, events, education, and advocacy.

Copyright © 2014 Supporting Illinois Brothers and Sisters, All rights reserved. You are receiving this email because you opted in at our website, Sibsnetwork.org. Our mailing address is: Supporting Illinois Brothers and Sisters 3800 N Lake Shore Drive #3E Chicago, IL 60613 Add us to your address book unsubscribe from this list | update subscription preferences