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Your Own Home: Local Discussions May 28, June 18

Finding desirable housing for our adult children remains one of the most intractable problems we face as parents.  Recent IPADD discussions have highlighted concerns around the PUNS selections and lack of CILA options, with many families selecting home-based care instead.  This, of course, works fine in the short term, but at some point the vast majority of our children will need independent housing with some level of support.  We really can’t afford to give up.

Providers are also frustrated.  Impeded by slow state payment and absent financing for new facilities they cannot serve their missions.  Many would like to develop housing to serve this pressing need.  And parents-providers face a torrent of red tape and frustration when they try to fill the gap.  In short, housing for the developmentally disabled is a mess in our state.  But we really can’t afford to give up.

The Illinois Council on Developmental Disability (ICDD) is working with CSH to sponsor a series of meetings to discuss housing throughout the state.  As they seek to develop a report on the state of DD housing in Illinois, CSH asks us the following “What would your life be like if you had your own home?”  Findings from these meetings will be reported to ICDD and may well form the foundation for developing solutions.   CSH is a well-qualified partner with a history of addressing housing needs among those in need, such as the homeless and veterans.

This article highlights the upcoming discussions scheduled in Lake County and McHenry County.  The Lake County discussions are at Protected Tomorrows on May 28.  One is at 10am and the other at 6pm.  The McHenry County meetings are on June 18, also 10am and 6pm. (Other meetings are scheduled around the state, and they are listed on the ICDD website.)

In order to stimulate participation in these important discussions, I have created a little website for Lake and McHenry Counties.  It contains links to the event flyers, sponsors, registration, and some background papers for those who are interested.  The website is http://maryrhode9.wix.com/housing.

Please pass this along to anyone who will find this of interest.   I hope you will participate in a session.  We really can’t afford to give up on housing.

 

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Vote for TheNemoNews

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.  (http://www.thenemonews.com/about/faq)

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 http://www.TheNemoNews.com 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: http://www.thenemonews.com/about/faq

Now in its second year, TheNemoNews.com 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 TheNemoNews.com 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 TheNemoNews.com to get new posts directly and become part of the group.  You can do so here. or email mary@thenemonews.com

 

Gosh.

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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:  http://fptepolicyworks.ideascale.com/  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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Nemo’s Business Plan: In Progress

Hoping to become self-sustaining and more robust, TheNemoNews.com 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, sdimpf1@uic.edu, at 312-413-8993.

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Drive-able Distances and Services: Opinion

carAs I read about the wonderful advances being made in Chicagoland and the nation, I often find myself wondering if there is any way our family can tie-in to them.   Those social groups, work opportunities and  miracle-working professionals inspire me and I am grateful to learn about them and to be in a metropolitan area where wonderful things can and do happen.

Yet, many resources remain out of reach since they are not a “drivable distance” for our family.  We are in the Grayslake area, and we can’t schedule weekly visits to a gifted therapist in Tinley Park or join an athletic team  in West Chicago.   While we can plan to participate in special events in those towns, we hope our day-to-day needs can be met by opportunities that are near us.  But how do we find them?

The idea of a “drivable distance” is one of the key concepts behind TheNemoNews.com.  Our news is hyperlocal, meaning we target a specific group of individuals within a specific geographical area — those affected by disabilities in the Lake County, Illinois area.  (You might be familiar with ThePatch.org;  they do the same kind of thing.)

TheNemoNews concentrates on resources, opportunities and events that take place within a one hour drive of Mundelein.   We promote news and information that helps us find and support each other here — where we live.

Of course, the “drivable distance” term includes the use of cars, buses, taxis, bicycles and other forms of transportation that are accessible to individuals with disabilities.  And we all know that is spotty.   (We’re hoping to do an article on transportation sometime soon.)  TheNemoNews has settled into the Lake County Area, including news from Lake and McHenry Counties, sometimes Kenosha –driveable.  We occasionally include online resources that are really good.

We welcome your local news, articles and comments.

 

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2012 Voting — Does the Disabled Vote Count?

Senator Robert Dole and Representative Tony Coehlo published an op-ed piece in Politico about the untapped political power of those with disabilities.   They reason that since 19% of the American population has a disability, every politician should pay heed.  And every voter should claim their right to vote.  They support the upcoming National Forum on Disabliity Issues.     ( Described in Nemo’s post yesterday.)   They acknowledge the difficulty of establishing one coherent voice within the community.   Read the Politico  article  here. 

TheNemoNews reasons that  everyone in Lake County, disabled or not, should register to vote and participate in elections.  It is our right, and gives form to our voice. When those concerned with disabilities do not vote, they surrender their voice in matters that directly affect them with respect to housing, transportation, employment, education, health care, opportunity and more.   It is the right of a disabled individual to request an absentee ballot or  the assistance of another person in the voting booth.  A request for assistance will be made to the precinct judge at the polling place.

In order to register to vote, a citizen 18 years of age or older (by election day) should bring two pieces of identification to an official voter registration facility.  Click here for the Lake County pamphlet on Official Voter Registration Facilities.    The Illinois State Board of Elections website has similar information.

The last day to register to vote is October 9, 2012. 

The Lake County Clerk’s website has a great deal of information for residents.   Start the process  by finding out if you are a registered voter for this election.  By giving them your name and address, you will be able to see your personalized information.

From this page, there are boxes  that allow you to

  • Obtain a sample ballot — Select box labelled  “What is On My Ballot”
  • Obtain a list of your elected officials.
  • Request an absentee ballot online.  To request a ballot by phone call the office at 847-377-2406.

Early voting *in person* begins October 22 and ending on Saturday, November 3.

If you are not registered, have moved or changed your name, please contact the Voter Registration Department at
(847) 377-2410 for registration information before the close of registration on October 9, 2012.

Readers with more information on voting are encouraged to post in the comments section of this post.

 

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Wendy on Wheels at Abilities Fair

“Wendy on Wheels” author Angela Lieberman attended the recent Abilities Expo in Schaumburg.  She reviews her experience on her blog.

Ms. Lieberman lead a discussion on bullying using  the fourth book in her series, “Wendy Takes A Stand”,  In this book, Wendy witnesses a bullying incident and has to decide how to handle it.  Other books include “Wendy Goes to the Beach”, “Wendy Goes to the Zoo” and “Wendy Saves the Day”.

Author Lieberman recently released two books on self-catheterization for children in collaboration with 180 Medical.  “Ethan can Cath” and “Emma Can Cath” will help children learn this important independence-building skill.  The book is free to members of the 180 Medical Kids Club.   Membership is free and available at http://www180medical.com/kids.

Acclaimed author Lieberman stories were inspired by her sister, Amanda, who has spina bidida.  They have been featured magazines and newspapers.  She is currently booking fall school visits.

 

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Nemo’s Summer

This summer publication of TheNemoNews.com has been spottier than hoped or anticipated.  Thanks for hanging in there.  We would like to share a couple of thoughts with you.

First:  TheNemoNews.com will resume publishing articles as they arrive for the rest of the summer.  Some regard will be given to the importance, timeliness and audience for the item.  So you’ll see us more often now, but still not quite daily.

Second: In the fall, we will publish on a more regular schedule.  We are currently reviewing software and scheduling options that will make TheNemoNews more useful.  We hope to take Nemo to the next level.

Finally:  Thank you for your encouragement and kind words.  We are gratified that subscribers continue to enroll even though we have not published very much this summer.  We are excited by the opportunities presented by the community that TheNemoNews serves.

Thanks for staying tuned in….

Mary Rhodes
Publisher

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Support TheNemoNews.com

Over the last weeks and months, I’ve talked to several of you about developing TheNemoNews.com to serve the communication needs of Lake, McHenry and Kenosha Counties.  You may be aware that the news feed is now active and developing a little every day.   At this time, I’d like to ask you to support development of TheNemoNews.com in four ways (and none of them cost anything!)

  1. Subscribe to the Email Feed — Invite Your Friends.
    This allows me to count the number of people I am reaching.  That helps me monitor growth and “reach”.  At some point I will need to know these numbers in order to attract the paid advertising that will allow TheNemoNews.com to continue long-term.You will receive 1 email daily containing the story of the day, Monday thru Friday.In order to subscribe, go to the area behind the image of the submarine on the front page.  There is a place to enter your email address.  I believe you will be sent an email to verify your subscription.   This is to prevent “spam”.If you signed up at the CLC Options Fair or the Woodstock Autism Fair, I would appreciate it if you signed up as above.  For the same reasons.
  2. Comment on Stories
    Please feel free to comment on stories, perhaps providing more information or asking a question. Your feedback will help us all learn more, and help TheNemoNews improve.  If is currently set up as a blog to allow for this kind of interaction.
  3. Send Your Press Releases and News
    I’m always looking for high-quality news and announcements.  Please send news about your fairs, outings, speakers, etc.  Agencies and clubs are asked to add info@thenemonews.com to your outreach list.  We want to publish high-quality news that is timely, objective and engaging.
  4. Submit an Article (picture, poem)  for Publication
    We intend to add two sections to TheNemoNews.com in the coming months.  The first is an “Opinion” section.  This is where your article might go. The articles will be under 1000 words, and guided by the publication guidelines.You might consider submitting something like:   “Five Things Parents Should Know about IEPs”, “Does Your Child Need a Therapist?”, “Why I Like My Support Group (and Vice Versa)”.(For the record, the second section will be a “Spotlight” section where we write brief profiles of organizations and agencies in our area.)

Thank you so much for your attention and for supporting TheNemoNews.com
Mary Curran Rhodes, Publisher
mary@thenemonews.com

 

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