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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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Back to the Future

Back in the 1950′s many parents of children with disabilities did not like the options they were offered with regard to the care and training of their children with disabilities.   Institutionalization, dependency and separation were not acceptable options to these parents.  So some parents came together and acted to create new solutions that suited their children and families better.  They forged paths in a new territory.  We now benefit from their efforts.

Eventually these parent-initiated organizations became the institutions and agencies we now know and use — Countryside Association, Avenues to Independence and The ARC of Illinois, to name a few. (Betcha several of your agencies began about the same time, prompted by activist parents.)   I can’t help but think that parents are in the same position now — operating with lousy information, shrinking resources, and unclear objectives.  We’re battling higher prevalence of disability, higher expectations for quality of life, smaller family support systems, reduced budgets and so on.  We need new options, new solutions.

Coming together is not easy these days.  Everyone works too hard, if they are lucky enough to have a job.  Privacy laws that are meant to protect us inadvertently keep us apart.  Families are scattered and mobile.  Each of our children is distinctly different from the other — one program does not fit all of us.

And the you-know-what doesn’t really hit the fan until the child in question turns 22.   That’s when the educational system withdraws its support, even if the Educators don’t  want to.   This is an age when many parents withdraw from their children’s lives in the interest of their independence, but we as parents of a young person with a disability are asked to become more involved.  This is because the teachers are gone, the remaining services are fractured, fear of rationing prompts us to withhold information from each other, and we are placed on waiting lists 10+ years  long. Who honestly thinks our disabled child can navigate this maze without help?   A lot of us need new solutions.

A central interest of was to improve the odds of coming together to improve lives by providing information of interest within a specific geographic area (Lake County Area).  We hope to better inform those in need.  We hope to stimulate conversation, creativity and solutions.  We hope to help catalyze a new solutions group.

Please subscribe directly to to get new posts directly and become part of the group.  You can do so here. or email



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Nemo’s Business Plan: In Progress

Hoping to become self-sustaining and more robust, started working on it’s business plan this spring.  Part of the process was to attend the Entrepreneurship Class held at the University of Illinois Chicago (UIC) during March and April.  While the business plan for Nemo  is not yet complete, we made great progress.  We will publish more about our plan as it moves forward.

There were about 10 students in the Business Plan class.  All were adults with disabilities who dreamed of self-employment.  All had an open case with Vocational Rehabilitation.  Their dreams ranged from fashion design to bed-bug control.  Some had dealt with disabilities all their life, others only recently.   And all of us sought to assess the competition, develop a marketing plan, struggled with  our break-even spreadsheets and tried to project earnings as we wrote our business plans.  The company we kept with each other was great.

Did you know that self-employment hovers around 11% among the disabled community?  That is somewhat more than the 7% in the general population.   It is good to see UIC and VR take a leadership role in promoting entrepreneurship among those with disabilities.   Dr. Fabricio  Balcazar should be lauded for leading these efforts at UIC.

For more information about the UIC Business Plan Program, contact Shawn Dimfl,, at 312-413-8993.

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IPADDUnite — Listserv Rich with Information &Support : Resource

One of the best networks for parents of those with older children with developmental disabilities is the IPADDUnite Listerv on Yahoo.  IPADDUnite stands for The Illinois Parents of Adults with Developmental Disabilities United, and was begun in September of 2006 by parents Ellen Bronfeld and Laurie Jerue after they attended the same ARC conference.  As the mothers of young adults leaving the school system, they needed more and better information to help their children transition to adult life.  The listserv now serves over 1000 members, mostly from Illinois.  Since its inception there have been about 25,000 messages sent. Continue Reading →

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DACA Application Workshops Scheduled

A series of  hands-on workshops to help youthful  immigrants apply for Deferred Action for Childhood Arrival (DACA) status are scheduled in the Lake County Area.   The Special Education District of Lake County (SEDOL) will co-sponsor one of these workshops on Thursday, December 13 from 5:00pm – 9:30pm for their families.   These workshops are co-sponsored by the Northern Alliance for Immigrants (whose website is under development.)  They are affiliated with the DREAM Relief project.

Applicants attending the  workshops should bring the set of documents that are detailed on the flyer below to the session.   There will be  translators and attorneys who will help them assemble the application packet. (Bennu Legal Services is a co-sponsor.)    There is a request for a $5 donation for materials.  Some applicants may retain attorneys for a fee ranging from $100-$200.

These workshops were established after a similar program at Navy Pier turned away thousands of individuals who came to apply for DACA status.   It was determined that the resources needed to help these young people in Lake and other northern counties are very limited.  The Northern Alliance for Immigrants stepped in to organize workshops in Lake, McHenry, Kane, Kenosha, and other areas.  A list of workshops in the northern counties can be found here.

Young people who came to the United States as children with their parents were directly affected by President Obama’s Executive Order the Deferred Action for Childhood Arrival (DACA) program.   There are a number of requirements to meet before applying.  The application is extensive and is renewable every 2 years.  Approved individuals get work permits, social security numbers and qualify for drivers licenses.  They become non-deportable.   Approval allows young immigrants  to continue with college and employment.   DACA brochure is here.     DACA webpage is here.

The SEDOL event on December 13, 2012 will accept only the first 100 participants and no one will be admitted after 6:30pm.   To pre-register go to  For more information contact Priscilla Cuba,, 847-548-2577, ext. 36.

For information about the DACA workshops contact, The Northern Alliance for Immigrants, Graciela Contreras, Executive Director , 847-514-6558,  Other upcoming workshops are shown below.  Click on the image to enlarge it.



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377 Board Placed on Ballot in McHenry

The McHenry County Board approved placement of the 377 Board referendum on the ballot April 9, 2013.    Twenty of the 23 board members in attendance voted in favor of placement.  About 40 people attended the November 20 meeting, and about half of those spoke.  The Northwest Herald published this article on the meeting.

Organizers are preparing to present their case to the voters of McHenry County.   The next meeting of the DD Task Force will be on Wednesday December 19. at 6:30 pm at the Shah Center in McHenry.

For more information contact:  Cindy Sullivan, Executive Director, Options and Advocacy for McHenry County,, (815) 477-4720


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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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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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