Stepping Out for Parkinson’s — June 9

Fun Walk

Fund Raiser for Parkinson’s

The Stepping Out for Parkinson’s Fun Walk will take place at Nippersink Forest Preserve on Sunday, June 9.  It features a 1.5 mile walk, run, wheel beginning at 11:30am.  (Packet pick up is at 11.)  The event also features volleyball, a bean toss and a raffle.  There are over 89 gift baskets so far.

The event benefits Focus on a Cure whose mission is raising awareness, increasing education and providing support to patients and family members who live with Parkinson’s disease.  This event was founded by Jodi Mara, a local woman affected by Parkinson’s.  This is the second year of the event in Lake County.

For more information about the Fun Walk, contact Jodi at 847-373-8320 or Barb at 847-970-8422.  Email them at sofpd@yahoo.com

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Entrepreneurial Jump Start on Saturday, June 8, 2013

JumpStart_FlyerChicagoland entrepreneurs (and wanna-bees) with Disabilities will gather this Saturday, June 8 for a day of education, networking and information.  Titled the “Entrepreneurial Jump Start” it will take place downtown at the Illinois Center for Rehabilitation and Education  (ICRE), 1950 W Roosevelt from 10am – 5pm, near UIC.

The fair will feature workshops, success stories, panels, booths and vendors.  In addition, it will mark the grand re-opening of their Artfully Gifted Retail Center — an consignment outlet for qualified business owners.

TheNemoNews recently toured the ICRE operation and was impressed by the vision and implementation of their goals and operations to promote entrepreneurship among those with disabilities.

For more information about the Entrepreneurial Jump Start contact Therese Manderino, Superintendent of the ICRE at  therese.manderino@illinois.gov, 312-433-3121.

 

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SO Torch Run in Lake County June 9

COLOR-IL-TORCH-RUN-jpgOver 100 Law Enforcement Officers will be carrying the Special Olympics Torch through Lake County on Sunday, June 9.  There are several “legs” to the run and it is likely the officers will be running somewhere near you.  Check with your local police department to see if/when you can cheer them on. The routes start at various places near the state line with Wisconsin around 6am.  They are detailed below.

These runs are part of 23 similar Torch Runs that begin in various places around the state (East St. Louis, Quincy, etc.)  All 23 segments will join up at the Opening Ceremonies are scheduled for 8 p.m. Friday, June 14 at Hancock Stadium in Normal, Illinois.

The Illinois Law Enforcement Torch Run for Special Olympics is a year round activity that has raised nearly $28 million over the last 27 years to support Special Olympics activities.   They aim to raise $3M this year.  For more information about the Torch Run visit the Special Olympics Illinois website, or visit this link   http://s162186.gridserver.com/law-enforcement-torch-run/

BTW — If you need a donut on May 31, stop by Cops on the Roof fundraiser held at these area Dunkin Donuts!  http://www.soill.org/dunkin-donuts-cop-on-rooftop/

Supporters are invited to line the course and cheer for the torch bearers
as they show their support for the Special Olympics Summer Games.

The Law Enforcement Torch Run in Lake County details follow with itineraries and maps:

The Gurnee Route begins at the Six Flags Employee Entrance on Grand and Milwaukee at 6:15am  and proceeds down Rt 21 to Dempster.  From there, it meets other legs in Proesel Park in Lincolnwood.  The Libertyville Stars Swim Team invites others to join them in front of the Baker’s Square on Milwaukee (21) and Greentree.  The torch runners are expected to pass by between 7-8am.

The Sheridan Road Route  begins at 6am at Sheridan Road and 128th in Winthrop Harbor for the first segment.   They will run along Sheridan Road until they arrive in Lake Forest around 8:30.  Then they will follow Green Bay Road to Evanston and conclude in Lincolnwood around noon.  In Lincolnwood, they will meet up with runners on another leg of the Torch Run.

The Hwy 83 Route begins in Antioch at 6am.   It goes through Lake Villa, Round Lake, Grayslake, and Wauconda.  The route takes Hwy 83 to Hwy 120 to Fairfield to Chardon and ends at the Wauconda Police Department around 9: 25am.

 

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SEDOL Honors Graduates

Student BlurredIt was an evening of laughter and tears as over 40 young people were recognized at the Annual SEDOL Community Life Skills Program Recognition Night.   Each student had the opportunity to address the packed audience.   A slide with their photograph and “farewell address” was projected on the stage  as they spoke.   Each of them was moving on to a new phase of life.  Many had “aged out” of the program during the preceding year.   It was a joyous and moving program.

Audience BlurredFor the first time this year, three students received the Dennis Lackie Employment Readiness Award.  This award was named after former job coach Dennis Lackie and is funded by his Memorial Fund.  He was known among students and colleagues for being “all business” as he helped students achieve their goals.  The awardees were selected by transition staff based on several criteria:  appropriate social skills, readiness to work, the ability to  independently manage transportation and successful completion of vocational training.  It is expected that this award will continue  in the coming years.

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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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IEP Boot Camp at LCCIL: High School

No two IEPs are the same, not even for the same child.  And IEPs for high school and transition students are different from elementary aged IEPs.  At a certain age, independence, transportation and employment take on more importance than the 3Rs.  As parents and students we are often baffled about the issues and options.  And where does the IEP fit into that?

The Lake County Center for Independent Living is offering a “IEP Summer BootCamp for Parents” in June that is focused on the high school and transition needs of students and families.  Parents will meet on June 4, 11, and 18 to share experiences and learn about IEPs in the teenage years.  Other particulars are still being worked out.  It would be a good time to express your interest in the workshops.

For more information on the IEP Bootcamp contact Shanta Frierson, 847-949-4440, shanta@lccil.org

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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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Extreme Recess on July 31 — Dreams for Kids

Extreme Recess -- Dreams for KidsDreams for Kids will hold its annual summer Extreme Recess event on July 31 at 9am.  This is a  spectacular water sports day for kids with disabilities held in in Twin Lakes, Wisconsin (not too far from Fox Lake.)   Following a day full of adaptive water skiing, swimming,  jumpy castles, water slides,  fishing, canoeing, kayaking, tube and jet ski rides, there will be a free ski show by the famed Aquanuts!

Contact Shelly ASAP to sign up as a participant, volunteer or an event sponsor.

 Read last year’s review here.  http://thenemonews.com/extreme-recess-a-review/

 

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