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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

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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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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Affordable Housing in Lake County?

There will be a housing “listening” session on Tuesday, May 21, 2013 from 1:00-2:30pm.  It will take place at the Lake County Center for Independent Living at 377 N. Seymour Ave. in Mundelein.  They will discuss the need for affordable and accessible housing in Lake County.  Strategies for working together to increase options will be discussed.

To RSVP contact Matt or Kaja at 847-949-4440 or email


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McHenry 377 Board Advocates Prepare for April 9 Vote

McHenry 377Disability advocates in McHenry County are advancing their efforts to pass a referendum to form a 377 Board (What is a 377 Board).  The vote takes place on April 9, 2013.  If passed, McHenry County will realize some $9M per year to serve those with developmental disabilities.

The website Vote Yes McHenry County Developmental Disabilities Board ( plainly presents the problem, proposed solution and plans for service.  It contains information and materials for advocates to use in the final days of the campaign.

This initiative is being watched by advocates around the state who face the same issues of inadequate services for family members, slow state payment to providers and increasing need among families.  A similar initiative in Kane County  (See  is aiming for a 2014 vote.  Kane advocates will be collecting signatures at polling places in Kane County on April 9th.   They need 8,000 more signatures  for placement of the referendum on the 2014 ballot.

For more information  on the McHenry initiative  contact Cindy Sullivan, Executive Director, Options & Advocacy for McHenry County, 815.477.4720 x 233,   or Patrick Maynard, PhD, President/CEO, Pioneer Center for Human Services, 815.759.7044,

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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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377 Board Petition in Kane County

Kane County now has an initiative to form a 377 Board to serve the needs of the developmentally disabled.  In order to get the referendum on the April 9, 2013 ballot, they need to collect 20,000 signatures from registered Kane County voters.  They currently have 7,000 signatures and are asking Kane County voters, advocates and others to help them reach this goal by December 31, 2012.  Advocates decided to act at this time because of the crisis in state funding for housing, transportation, jobs, job training and respite services.   Local funds are being sought to provide care.

Organizers cite the needs of 10,000 adults in Kane County who need lifetime care, and another 10,000 who need a lesser level of care.  This need grows as care-giving parents age and cannot care for their loved ones.  Moreover, there are 17,000 students receiving special education services in Kane County.  Some portion of these individuals will need care as they mature.

It is still possible for the County Board to approve placement of the referendum on the ballot, but there has been no action to do so.  County Board President Chris Lauzen was also cited by the Kane County Chronicle as saying that if voters ultimately approved the levy, he would try to keep the effect tax neutral by cutting in other areas.

A well-developed website supports this effort at The site has links to petition information, press coverage, and an explanatory power point presentation.

For more information contact Kathy Hazelwood,Vice President Marketing & Development, Association for Individual Development, 847-931-2290,



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Did You Get A Ligas Award Letter? IAMC Teleconference

Reta Hoskin, Assistant Director for the Division of Developmental Disabilities (DHS) will join the Illinois Association of Microboards and Cooperatives for a conference call today.  ( Tuesday, Dec 11, 2012)  The call will take place  from 11:00am till noon.  The call is targeted at those individuals who may have recently received an award letter resulting from the Ligas Consent Decree.  These families face important decisions, and the call is meant to help them understand their options and the processes involved.    The call is open to anyone with an interest in this process. 

The call-in number is 888-494-4032;   Code: 1879310092.

IAMC organizers have requested that attendees submit questions in advance if possible so that Ms. Hoskin can be prepared, and time be effectively used.

For more information contact Vicki Niswander, Executive Director, IAMC, 217-586-4552.

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Holiday Hearts Appeal — NorthPointe Resources

The Annual Holiday Hearts Appeal has begun at NorthPointe Resources in Zion.   The Appeal provides opportunities for donors to support individuals and programs at NorthPointe in a variety of ways.   These include:  providing gifts for individuals, sponsoring the annual holiday party, generalized support and volunteering with NorthPointe.

Holiday Gift giving can be done on a personalized or general basis.  Often this holiday gift is the only gift the individual receives in a year.  Many consumers no longer have family supports and most have extremely limited social support circles.  Donors preferring that “personal touch” can receive an individual’s wishlist from NorthPointe and select a gift specifically for that person.

Alternately, $25 gift cards from a variety of stores are welcome.  At this writing, NorthPointe is short 45 gift cards.  Anyone wishing to donate a card may send it directly to Lisa Cummings at the address shown below. (See the flyer *below* for suggestions.)

Gift receipt is requested by December 14th in order to be ready for the Holiday Party.

The Holiday Hearts Party for NorthPointe consumers (clients) will be held on December 21.  A variety of sponsorship levels are available and they are recruiting volunteer elves to pass out gifts.

Finally the Holiday Hearts Appeal renews its request for donations and volunteers year round to support programs that are underfunded, and further weakened by the slow payment predicament we have in the State of Illinois.

NorthPointe Resources provides a full range of services for individuals with developmental disability and/or Mental Illnesses.  These services include Residential Services (full-time and intermittent), Vocational Services and Business Services.   Northpointe is a 501(c)(3) organization and contributions are tax-deductible.

For more information on NorthPointe and the Holiday Hearts Appeal contact Lisa Cummings,, 847-731-5708.  Mail gift cards to her attention at NorthPointe Resources, 3441 Sheridan Road  Zion, IL 60099.  Click on the images below to enlarge the page.




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Social Security & Medicaid Stories– The ARC

With all the talk in Washington about cutting the budget, The ARC anticipates that SSI, Medicaid and Social Security will be put on the chopping block.   They are rapidly working to put together a” human face” for those legislators working on these budget numbers.

The ARC is collecting stories as part of a survey among those who receive and need to continue receiving  these services.  While the impact of this funding is clear to us, it is not necessarily clear to legislators who are under pressure to cut costs.  If The ARC can  share our stories with supporters, they will be able to help them defend us against potentially devastating cuts.

Respondents can tell The ARC how  Medicaid and Social Security affects their lives.   Self-advocates, parents, friends and service providers may wish to participate.  This brief survey is versatile, providing  an option for anonymity as well as an opportunity to provide a photograph and contact information.   Respondents have a great deal of control over the information that is submitted.

These initiatives are taking place on the national level.  For more information contact  The Arc 1825 K Street NW, Suite 1200, Washington, DC 20006,  800.433.5255


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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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