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Today, I posted the following idea to the Federal Partners in Transition discussion mentioned last week. I propose development of a network of local information clearinghouses similar to TheNemoNews.  In support of this idea, I also developed a brief FAQ that is now on the website.  (

If you have found TheNemoNews helpful, and believe it bears development, I would appreciate your vote on the website.  The discussion ends on May 27, and this entry has been posted towards the end of the discussion.

Local Information Clearinghouses

88% of those with DD live at home according to a recent study.  They and their families are ill-equipped to navigate the maze of programs services and opportunities that are available locally.  Many are poor, ill informed, overwhelmed and/or isolated.  The internet provides a way to develop “hyperlocal” information clearinghouses that serve localities and could be built into a national network.  These could deliver news using social media, internet and mobile technologies.  I would like to see the federal system develop a network of information clearinghouses that are local, family-oriented and ground-up in approach.

In Lake County, Illinois, a parent began to address local needs for information.  It targets the (young) and adult community and their families by posting news briefs that are cross-agency, objective, and permission-based.  A business plan in in progress.  For more information please go to:

Now in its second year, has learned a great deal about what it takes to deliver the news.  While facing cultural and technical challenges, I envision a network of local news services that provide individuals with access to information and resources that are within reach.

Thanks for your support!


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Federal Partners in Transition eDiscussion til May 27

Have you ever thought that there was a better way to do things?  Have you ever wished you could talk to somebody important enough to act on your ideas?  Or maybe just listen to your ideas?  Here’s your chance.  There is an online discussion taking place the next two weeks (May 13-27).  Representatives of the Department of Labor, Education, Health and Human Services and the Social Security Administration (Federal Partners in Transition)   are hosting this discussion and asking the following question:

What legislative and regulatory changes need to happen to effectively implement employment, education, health and human and social security services for youth and young adults with disabilities under public law?

It is a “crowd-sourced” discussion.  Individuals and agencies present their ideas and the rest of us vote their ideas up and down.  In this way, the “cream” of ideas rise to the top.  There were over 100 ideas within 24 hours, and the top idea (with 54 votes) was to eliminate waiting lists.  (Nemo votes for that!)

Participants need to register in order to participate.  In order to participate go to:  In addition, we asked one author a question about their particular idea, and have received half a dozen responses from participants so far.  So Nemo won’t be asking a lot of idle questions…LOL.

Nemo has noted that some ideas on the website are poorly written and difficult to understand.  Some are pure jargon.  A participant might want to draft an idea and have someone else read it before posting.  Otherwise your great idea could be lost in the mix if it is unclear.   And we don’t want that to happen!


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Ed McManus Tonight at Protected Tomorrows

Protected TomorrowsEd McManus will speak at 7pm tonight at Protected Tomorrows LifeCare Center, 103 Schelter Rd, Lincolnshire.  He will discuss Illinois services for individuals with special needs.  Topics include the PUNS list, the Ligas Consent Decree, the role of PAS agencies in delivering services.  The event is free, but registration is requested (847-522-8086).

Ed recently retired from the Illinois Division of Developmental Disabilities.  His career spanned several agencies including Staff Attorney for the Office of the Inspector General, State Coordinator for the Home-Based Services Program, and much more.  Currently he consults with agencies and families trying to navigate the system.   Ed’s newsletters can be found at his facebook page, where he states:  “Our main focus is to provide a better understanding of the Illinois DD system, which continues to mystify providers and families alike because it is so complex.”

This event is a kickoff for the  new Protected Tomorrows Family Membership program.  Details are on the website. 

(Editor’s note:  We have had some computer problems lately that have interfered with timely posting of notices such as these.  Hopefully they are worked out now.)

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200+ Attend Legislative Breakfast

Undeterred by a foggy Monday morning, over 200 people attended the 6th Biennial Legislative Breakfast on December 3, 2012 at the Chevy Chase Country Club in Wheeling.  They welcomed legislators, legislator-elects,  and their representatives from 13 districts.  The Breakfast was sponsored by the North/Northwest Cook County and Lake County Work Group.  The legislators attending are listed below.


Senator Daniel Biss – District 9
Rep. Scott Drury
– District 58
Dan Krucek, Aide to Senator Dan Duffy – District 26
Rep. Laura Fine – District 17
Rep. David Harris – District 53
Jamie Morrison, Aide to Senator Dan Kowtowski – District 28 and Intern Andrew Gomberg
Lindy Mika, Aide to Senator Terry Link – District 30
Timothy Graham, Aide to Rep. Rita Mayfield – District 60
Senator Julie Morrison – District 58
Alicia Krippinger, Aide to Senator Matt Murphy – District 27
Brian Koppe, Aide to Rep.Carol Sente – District 59
Rep Tom Morrison – District 54 and Aide Joy Wolfe
Rep. Sam Yingling – District 62

Each legislator received an informational notebook and was invited to participate in the North/Northwest Cook County and Lake County Work Group.  The work group  is comprised of parents, consumers, providers, legislators, government agencies and schools addressing the needs of  individuals with developmental disabilities.  The meet monthly to share information addressing common concerns.

Joanell Voight, President/CEO of Community Alternatives Unlimited welcomed the attendees with the theme “Help Move Us Forward:  Make Us a Priority”.  Sandra Loebe Stoken congratulated the legislators and newly elected legislators as she highlighted the opportunities they have to bring our community of people with disabilities into a brighter and more sustaining future.     Ed McManus, Consultant, Developmental Disability Consultants, described legislative  issues that concern the Work Group, and Helen Kauffman described how legislators can best work with those in the developmentally delayed constituency.

Attendees were greeted by Special Olympians from the Libertyville Stars Swim Team and Horsefeathers Therapeutic Riding.  Other consumers from NSSED, SEDOL ,Glenkirk and other organizations welcomed attendees to the event.  Also in attendance were many primary consumers who live, work, and vote in their local communities.

For more information about the Work Group contact Elizabeth Ramos, Community Alternatives United (CAU), 773-867-4159,


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Legislative Breakfast, December 3

“Make Us a Priority” is the theme of the 6th Biennial Legislative Breakfast sponsored by The North/Northwest Cook County and Lake County Work Group ( .  The work group  is comprised of parents, consumers, providers, legislators, government agencies and schools addressing the needs of  individuals with developmental disabilities.  The meet monthly to share information addressing common concerns.

The breakfast will take place on Monday December 3, 2012 at the Chevy Chase Country Club – Devonshire Room in Wheeling.  It goes from  8:30am-10:00am.

State legislators and their aides are invited to attend as well as consumers with developmental disabilities and their families.   Service providers and advocates are also invited to attend.   The event will feature a brief presentation on the  facts, figures and other information  of concern to families and professionals.  Legislators will play a key role in establishing State policy addressing these needs.

Editorial change:  11:15am 11/19/2012:  Legislators who will attend are asked to RSVP by November 30 to Elizabeth Ramos, Community Alternatives United (CAU), 773-867-4159,  Consumers and families need not RSVP.

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PUNS Selection — IAMC Members Discuss

Recently another 1500 names were selected by lottery from the PUNS list (Prioritization of Urgency of Need for Services).  This is a list of children, teens, and adults with developmental disabilities who need services or supports from the State of Illinois.  The list is used for planning, budgeting and delivering services to those in need.  The current waiting list for services tops 20,000 individuals.

Accordingly, getting a PUNS services notification letter is a big deal for families in need that have waited a long time.  Nemo is aware of several families who were recently selected and now wonder what it means to them.

There will be a telephone conference TONIGHT (Wednesday, November 7, 2012) at 7pm (CST) for those whose name was selected and wish to discuss options going forward.  The discussion will be facilitated by staff from the Illinois Association of Microboards and Cooperatives (IAMC) .   While the IAMC is not a PUNS agency, they are usually very well-informed.  Nemo would attend if not for a previous engagement.

For more information contact Vicki Niswander, Executive Director, IAMC, 217-586-4552.  Those who wish to attend can call in at  605-477-3000, passcode 501904.  The web link is

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What is a 377 Board? Background

Editor’s Note:  TheNemoNews readers have asked for some background on a 377 Board as they take interest in the current McHenry County initiative.  While Nemo is not a lawyer, we have decided to share our understanding a 377 Board with Nemo readers.  A significant portion of this information has been drawn from the Association of Community Mental Health Authorities of Illinois.

Governmental care for those with developmental disabilities is characterized by great need and few resources to meet those needs.  Services vary widely by locality, making states very different, and localities very different in the quality of life offered to its dependent citizens.  At this time, Illinois suffers from a profound financial shortfall that reaches into the lives of families and individuals with developmental disabilities.  Service agencies teeter on the edge of solvency because of slow payment from the State.

Yet the unrelenting need for services confronts everyone associated with the world of developmental disability.  The need for planning, assessment and delivery of services relating to housing, transportation, health care, employment, social supports often goes unmet.  It is not uncommon to find a 60 year old individual with a developmental disability living with an 80+ year old parent and relying on them for everything.  The state is then called in when the caregiver’s health fails.  The life of the surviving person is changed forever.  Often a lack of local services and facilities requires them to move miles away, into an unfamiliar world with few established supports.  Some localities seek to remedy this situation.

A 377 Board is one of three different kinds of taxing authorities allowed by the State of Illinois that localities can use to fund services for individuals who are disabled by mental illness, substance abuse or developmental disabilities.  These three are referred to as 708, 377 and 553 Local Mental Health Authorities or Boards.  More than one of these authorities can exist in a locality.  Some exist in townships, others exist in counties.

The most prevalent kind of board is a 708 — a Mental Health Board.  There are 50+ counties with these Boards.  Some townships have 708 boards.  McHenry County is currently served by a 708 board that allocates approximately 15% of its budget to the care of those with developmental disabilities.  This portion does not meet the needs that exist in McHenry County.

A 553 Board is called a Health Department Board.  Some health departments are formed under a 553 referendum of voters and become independent taxing authorities.  In Chicagoland, Lake, DuPage and Will Counties have 553 Boards.  Services for the mentally ill, substance abusers and developmentally delayed individuals are channeled through the health department in those counties.  Again, need often overwhelms the department resources.

The 377 Boards address the specific needs of the developmentally delayed.  They exist on the county level.  There are 14 Illinois counties with 377 Boards, and 4 of these also have a 708 Board.  McLean County has a 377 Board and a 553 Board.  The 377 legislation calls for a voter referendum to form the Board.  The Board is enabled to plan, evaluate and deliver services for the developmentally delayed population in their jurisdiction.




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Illinois Transition Conference Sells Out

The 8th Annual Illinois Statewide Transition Conference is no longer accepting registrations and is discouraging walk-ins.  The conference brings together professionals, policymakers and families concerned with making the transition from student to adult in Illinois.  The conference  rotates between different parts of the state, and this year it is in St. Charles from October 24 – 26, attracting an overflow of Chicagoland participants.

The Conference targets high school aged students and young adults with disabilities, their family members and teachers, vocational professionals, caregivers, health care professionals, college students pursuing careers in special education and community advocates.  Historically, some attendees receive stipends from the ARC to attend this conference.  Refer to TheNemoNews article here for information on stipends.

Next year’s conference will be held on October 24-25, 2013 at the Thelma Keller Convention Center in Effingham, IL.

According to the website the Conference goals include:

  • Family Involvement (e.g., parents and families as partners in planning for and delivering transition services)
  • Student Self-determination (e.g., using transition assessment information and facilitating students’ self-determination to develop individualized plans based on their post-school goals)
  • Interagency Collaboration (e.g., involvement of community businesses, organizations and agencies in all aspects of transition-focused goals)
  • Effective program structures (e.g., efficient and effective delivery of transition-focused education and services to all transition-aged youth)

For more information about the conference contact Tara Dunning, Transition Conference Co-Chair,  217-744-7777 or


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Respite Funding Still Available

Funding is still available for respite care under this program.  Recent communications suggest that there is a fair amount of flexibility in the program.  As we prepare for the new school year, needs for respite may arise in families.  TheNemoNews repeats it’s earlier post for your information.

Funding is currently available for families in need of emergency respite care for individuals with special needs in Illinois.  There is no age limit on the person to be cared for (birth to 100+).  The funding for this project is available until September 30, 2012.

Called the Lifespan Emergency Respite Program, the purpose is to help families with children or adults with special needs deal with an urgent need for respite care in the absence of any other funding source.  The program does not provide the particular respite caregiver, although a list of caregivers can be found on the website. There are other rules for eligibility and limits on expenses that are described on the website.

For more information visit the Illinois Respite Coalition or contact  Nancy Fidler, Illinois Respite Coalition at or 630-529-2871 x3231

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Ligas Overview at McHenry College May 3

The recent The Ligas Consent Decree is having a large effect on housing for adult individuals with developmental disabilities.  The Decree extends not only to those who live in a private ICD/FF, but also to those living in their family home and seeking services.  Mr. Tony Records is the Court Monitor for implementing the decree.  He will speak on Thursday, May 3, at 7pm at McHenry County College, Room B-166-167.

The meeting is hosted by the Self Advocacy Council of Northern Illinois.  From the flyer:

The disability system in Illinois is changing and knowing about these new changes in service planning will offer individuals more opportunities for community inclusion and
new community living opportunities!


For more information about the program,  contact Cathy Christensen, Self Advocacy Council of Northern Illinois, 815-382-1530,

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