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A Voice Of Reason

Speaking out for people with
intellectual & developmental disabilities

 







 VOR

836 S. Arlington Hts Rd.  #351

Elk Grove Village, IL  60007





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Please donate to VOR today that we may continue to provide a voice for those who cannot speak for themselves.

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Membership Matters!

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Please keep your membership current!



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Free One-Year Digital Memberships for Direct Support Professionals


We want to show our appreciation to the people who provide the long-term care for our loved ones with Intellectual and Developmental Disabilities.


We are offering 100 free one-year digital subscriptions to VOR's weekly newsletter and Action Alerts. The subscriptions are available to Direct Service Professionals and Nursing, Medical, or Dental Staff at state-run or privately operated Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID).


Members are encouraged to share this offer to caregivers in their loved one's facilities. There will be a limit of five subscriptions per facility. Subscriptions will be active until January 1, 2019.


To apply, simply send an email to info@vor.net with the subject line Free Digital Subscription and include:


1. The name, address, telephone, and email address of the applicant

2. The name and address of the facility at which they are employed

3. The name of the VOR member who has referred them.





























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Volunteers Needed!

Volunteers are needed for several committees and specific tasks. VOR relies on its members to perform many of its key responsibilities. Please join us, and help us to continue our mission.


























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Exceptional Parent Magazine
(EP)
is now available for free to digital subscribers!

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WHAT'S HAPPENING IN YOUR STATE?
Share the news with us at 
info@vor.net
or call us toll-free at 877-399-4867

And of course, visit our website at:
www.vor.net


























Guardianship Resources

VOR understands the valuable role that guardians play in the emotional and physical well-being of people with intellectual and developmental disabilities (I/DD). We want to ensure that guardians, the majority of whom are family members or close friends of the person with I/DD, have all the information they need to make informed decisions about this vital part of the safety net. 

Attacks on guardianship have become more frequent, especially with the advent of funding to promote Supported Decision Making as a replacement for guardianship. For more information, see the links on the VOR Website:

http://vor.net/get-help/more-resources/item/guardianship


Many states have guardianship associations affiliated with the National Guardianship Association (NGA)

www.guardianship.org  

The NGA advocates for high quality standards in guardianship and certification of guardians and the protection of the rights of incapacitated adults. That said, as with any large advocacy organization, you may not agree with all their policy positions, but they are a good source of information and an avenue for family and friends who have taken on the responsibility of guardianship to make sure their perspective is represented in proposed policy changes.

The NGA lists affiliate organizations for 25 states:

www.guardianship.org/
state_affiliates.htm


If your state is not listed or you know of other local or state guardianship organizations, send VOR an email and we will add a link to our Website.























VOR's
Website Features
Information and
Resources for
Dental Services
in several states throughout the country.

Click the button below to see VOR's Dental Resource Page

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PRESS CONTACTS NEEDED!

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VOR's Marketing Committee is compiling a list of media contacts who are familiar with I/DD issues and understand the importance of ICF's, Sheltered Workshops, and other services that impact the lives of our family members.


If you know of any reporters or media outlets in your area, please send their name, the name of their organization, and contact information to us at info@vor.net






VOR
2018
ANNUAL MEETING & LEGISLATIVE INITIATIVE
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HYATT REGENCY CAPITOL HILL
 WASHINGTON, D.C.
  
JUNE 9 - 13, 2018

Registration is Open!

Saturday, June 9:
Board of Directors Meeting, Committee Reports, State Coordinators' Reports on the State of our States,
Legislative Committee Reports

Sunday, June 10:
Panel Discussion: Engaging Advocacy in Your State, Guest Speakers (TBA), Legislative Agenda: Review of the materials we are presenting on Capitol Hill
Optional - Sunday Dinner At The Dubliner

Monday - Wednesday, June 11-13:
Hill Visits w. Members of Congress and Legislative Aides



VISIT OUR WEBSITE
FOR MORE INFORMATION
www.vor.net































Support VOR while you shop!


If you shop at Amazon, shop at AmazonSmile


AmazonSmile is a simple and automatic way for you to support VOR every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same prices, selection and shopping experience as Amazon, with the added bonus that Amazon will donate a portion of the purchase price to VOR.


To shop at AmazonSmile simply go to smile.amazon.com from the web browser on your computer or mobile device. Fill in the form and select "VOR - Elk Grove Village".


You may also want to add a bookmark to AmazonSmile to make it even easier to return and start your shopping at AmazonSmile.


























Please donate to VOR today that we may continue to provide a voice for those who cannot speak for themselves.

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March 9, 2018

VOR Weekly News Update
News and views for VOR Advocates

Judiciary Hearing Room 3-6-18 2
House Judiciary Hearing Room - March 6, 2018

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VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities

VOR promises to empower you to make and protect quality of life choices for individuals
 with developmental 
disabilities

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Capitol-for-Forum-crop
VOR's
ANNUAL MEETING & LEGISLATIVE INITIATIVE
 
HYATT REGENCY CAPITOL HILL
 WASHINGTON, D.C.
JUNE 9 - 13, 2018
~~~~~~~~~~~~~~~~~~
  
CLICK HERE TO REGISTER FOR THE EVENT
   
CLICK HERE TO RESERVE ROOMS AT THE HYATT

   
~~~~~~~~~~~~~~~~~~

Saturday, June 9:
Board of Directors Meeting, Committee Reports, State Coordinators' Reports on the State of our States,
Legislative Committee Reports

Sunday, June 10:
Panel Discussion: Engaging Advocacy in Your State, Guest Speakers (TBA), Legislative Agenda: Review of the materials we are presenting on Capitol Hill
Optional - Sunday Dinner At The Dubliner

Monday - Wednesday, June 11-13:
Hill Visits w. Members of Congress and Legislative Aides
VOR Logo No By Line

REGISTER NOW!

  

Early registration allows us the flexibility to add more rooms to our room bloc and to make better estimates of the materials we will need for the conference. Early registrants get a discount rate, with three tiers of pricing for both members and non-members (whose enrollment in the event comes with a one-year membership).


Pricing for registration is:

 

VOR Members:

$75 per member if paid by March 18, 2018

$90 per member if paid by April 30, 2018

$110 per member if paid after May 1, 2018


Non-VOR Members: (Fee includes 1 year membership (Regularly $45)

$105 per person if paid by March 18, 2018

$125 per person if paid by April 30, 2018

$150 per person if paid after May 1, 2018


To register, please click here, or paste this link into your browser:

 https://interland3.donorperfect.net/weblink/weblink.aspx?name=E140301&id=7


The event will be held at the Hyatt Regency Capitol Hill again this year. This is a very nice hotel and it is only a short walk to the Capitol and the Senate and House Office Buildings. We have reserved a bloc of rooms at the hotel for the event. The price is $279 per night, a rate that is actually quite reasonable for Washington, D. C. at that time of year. To reserve your accommodations at the Hyatt for the event, please click here or paste this link into your browser:

https://aws.passkey.com/gt/215147596?gtid=c2fe90a300e2dd9f397f1a8de2f51707


We are also accepting reservations for our Sunday Dinner at the Dubliner. This is an added event, with a $35 prix-fixe menu that includes salad, entree, dessert, and non-alcoholic beverages (alcoholic beverages are available at an additional cost). This event has been popular in past years, so make sure to reserve your seat when you register. Space is limited, and this event has reached capacity in recent years, so make sure to reserve now!

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VOR and YOU

Screen Shot 2018-03-02 at 5.14.45 PM copy1. VOR Members Submit Testimony in Hearings with House Judiciary Committee Examining Class Action Lawsuits Against Intermediate Care Facilities for Individuals with Intellectual Disabilities

The House Judiciary Committee convened on March 6th, 2018 to examine class action lawsuits against ICF's/IID. The issue before the committee centered on the fact that these lawsuits have been conducted without the knowledge of stakeholders (residents, parents, and guardians) and without allowing notification of their right to opt-out of the suit. The committee also looked into the question of whether these suits are initiated with a bias against Rep GoodlatteICF's and with the goal of ultimately forcing their closure. The sub-committee hearings were chaired by Rep. Steve King (R-IA) at the request of House Judiciary Committee Chair Bob Goodlatte (R-VA).

The full video of the hearings is available online.

MB TestimonyTestimony on behalf of VOR was provided by:

Martha Bryant
- Mother and RN, BSN, of Virginia



CL Testimony 2

Caroline Lahrmann
- Mother, President of Disability Advocacy Alliance and VOR Ohio State Coordinator, and 

PK Testimony
Peter Kinzler
- Father and longtime VOR member, Legislative Committee Chair, who spent most of his professional career working on Capitol Hill.

Alison Barkoff
Opposing testimony was given by Alison Barkoff, Director of Advocacy at the Center for Public Representation, formerly of the Department Of Justice under Tom Perez.



Currently, class action lawsuits against ICF's are being waged against ICF's in Ohio and Utah.

Click here to read or download testimony from the hearings

Click here to watch the full video of the hearings on YouTube (hearings begin at 5:17 on the video)

For a related article, see State News -  Virginia, below

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March is Developmental Disability Awareness Month 


This is a great time to speak with your legislators about the need for a

full continuum of care

and the responsibility to meet the needs of

all people with

intellectual and developmental disabilities.


=============================

NATIONAL NEWS

2. Department of Health & Human Services Releases 2018 - 2022 Strategic Plan
 
Every four years, HHS updates its Strategic Plan, which describes its work to address complex, multifaceted, and evolving health and human services issues.

The plan is available online - Click here

 

=============================

STATE NEWS   


3. Virginia - Mother of Former Central Virginia Training Center Patient Testifies on Capitol Hill    

By Justin Faulconer, The News & Advance, March 7, 2018

A week before the one-year anniversary of Tyler Bryant’s death, his mother, Martha Bryant, addressed a congressional panel on her loss after he was removed from the Central Virginia Training Center in early 2017.

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Bryant, of Amherst County, told members of the House Subcommittee on Constitution and Civil Justice how her other son, Taylor, lives in what she described as a ward-style room in the Hiram W. Davis Medical Center in Petersburg in a living space she said is not compliant with the Americans With Disabilities Act. She said he has moved six times in the past year.


Addressing her twin sons’ departure from their longtime home at CVTC, Bryant said more than 40 people were “caught up” in the executive decision by the Virginia Department of Behavioral Health and Developmental Services to remove them from the Madison Heights facility. Their move came as Virginia prepares to shutter the state-run facility for those with intellectual and physical disabilities by 2020 in accordance with a 2012 settlement with the U.S. Department of Justice.


“We left on a cold January morning, probably the worst time of the year to go out,” Bryant said to the committee. “Tyler didn’t tolerate the trip. He was forced out [and] spent 49 days in the hospital. He died in a Richmond hospital when I couldn’t be there.”


Bryant told the committee about getting the phone call in her kitchen of her son’s death on March 16, 2017. Tyler had been just 23. Her testimony was part of the committee’s hearing on examining class action lawsuits against intermediate care facilities for individuals with intellectual and developmental disabilities. She was one of four family members from across the country to address the committee.


U.S. Rep. Bob Goodlatte, R-6th District, the committee’s chairman, said he recalled hearing of Tyler’s death. Bryant said in a phone interview she and Goodlatte shared a hug after she spoke, and she was touched by his remarks on her son. Goodlatte took part in introducing a resolution in 2012 to protect the interests of each resident of intermediate care facilities involved in class action lawsuits by federally funded entities and in the Department of Justice’s actions to have them moved to group home settings.


Speaking of “Olmstead v. L.C.,” a 1999 United States Supreme Court decision regarding discrimination against people with mental disabilities, Goodlatte said the court affirmed individuals’ right to opt out of placement in care facilities against their will. The court also recognized the community is “not the most appropriate place for some individuals,” Goodlatte said.


Bryant told the committee she fully supports legislation allowing families to opt out of removing individuals from institutions such as CVTC. She said she felt she was protected under the Olmstead ruling, but her sons still were forced out, and she recalled the surprise she felt after an August 2016 phone call informing her their building would close. Bryant reached out to every branch of government to prevent their removal, she said.


“My sons were the first to go without consent,” Bryant said. “I did not consent.”


Read the full article here


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4.
Opinion: Connecticut's Crisis in Caring for the Disabled

 

By John Hirschauer, The National Review, March 7, 2018


Institutions must be an option for those with severe handicaps.

Editor’s note: This article is adapted from one that won an essay contest run by the William F. Buckley, Jr. Program at Yale.


As conservatives, we rightly hold dear the American promise of liberty. One wonders what that sacred promise means for a person with profound intellectual or developmental disabilities.

SouthburyTrainingSchool

I grew up down the road from a 1,600-acre institution for the disabled. Its campus always charmed me, with its elegant architectural façades and sprawling bucolic landscapes — it was, in some ways, an encapsulation of the serene rural quiet that I loved about my hometown of Southbury, Conn. But it wasn’t until I began volunteering at the Southbury Training School that I really saw the way that so-called advocates, who claimed with moral certainty to speak on behalf of the entire population of persons with disabilities, had so fundamentally warped the debate over disability policy.


In Connecticut, over 2,000 individuals with developmental disabilities are on a waiting list for care. And yet, at advocates’ insistence, the Southbury Training School has been barred from accepting new residents for more than 30 years. That arbitrary prohibition should be lifted.


This proposal is not particularly unpopular, impractical, or even all that radical, in truth. But it is quite unfashionable — fashionable people, who hold all of the socially prescribed positions on domestic politics, unilaterally despise it. But as conservatives we are, if nothing else, comfortable with being unfashionable.

***

First, a sense of the problem: Imagine a six-foot, 215-pound, 35-year-old man with the mental acumen of a two-year-old child. If left to his own devices, he would attempt to swallow inedible objects, and lashes out violently at those caring for him. For some individuals like this in Connecticut, it is their parents, often aging and increasingly hopeless, who are forced to care for them.


Such an arrangement is necessitated, in part, because of the “Inclusion” movement. “Inclusion” is one of those Orwellian progressive euphemisms phrased in such a way as to preclude debate. If you do oppose their purely dogmatic assertions, it’s because you want people with disabilities to be “warehoused” or some other derivative slander of your motives. It’s a disgusting way to debate public policy, but it has been awfully effective in silencing their opposition.


The Inclusion movement claims that every person with a disability can function “in the community.” While this is certainly true for many people with disabilities, common sense dictates that not every disabled person is capable of bagging groceries all day, coming home, and living in a residential neighborhood. Some people have levels of need so high that that they require a more structured and intense care environment. Yet crusaders in the Inclusion movement have rebranded this common sense as verboten, an unspeakable apothegm that could crush the glimmer of hope for a world without institutions.


Continued

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5. Massachusetts - Wrentham Center Supporters Want You to Know:
"It's A Community"  
 
By Dave Kassel, COFAR Blog, March 8, 2018

As is the case with many of the staff at the Wrentham Developmental Center, John Maxell, supervisor of adapted physical education, sees his job as serving both the center’s residents and the surrounding community.


Maxell noted, for example, that he has been working at WDC with a man from the community who originally weighed more than 500 pounds and came to him for help in losing weight.


That man’s weight is now close to 300 pounds, Maxell said, and it is continuing to drop. Maxell made the comments to state legislators and others who were on a tour of WDC following a legislative breakfast there this past Tuesday.

 

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The breakfast was hosted by State Senator Richard Ross of Wrentham and was co-sponsored by the WDC Board of Trustees and by a range of family-based groups including the Friends of Wrentham, COFAR, the WDC Family Association, and the SpeakEasy Advocacy Group at WDC.

 

“I invite you to look at WDC with new eyes,” Colleen Lutkevich, COFAR executive director, told the lawmakers, staff of the Department of Developmental Services, and family members who attended the legislative breakfast. “WDC is a true community.”


Lutkevich noted that she was speaking on behalf of her sister, Jean Sullivan, who has been a WDC resident for more than half a century.


Continued


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6. Texas - Marijuana Complicates Guardianship For Teen With Severe Autism 

By Naomi Martin, Dallas Morning News, via Disability Scoop, March 7, 2018
Christy Zartler had practiced what to say, yet she was still nervous on the witness stand. She and her husband had always done what they believed was right for their daughter, Kara, who has autism. But now, the judge could decide they were criminals, or at least her husband was, and not allow him to be Kara’s guardian.

Christy leaned forward, her glasses perched atop blonde bangs, as she listened to her attorney’s questions. She glanced at Kara, 98-pounds and 18-years-old, seated in a wheelchair by her own attorney in the courtroom in downtown Dallas.


“Mark, your child’s father, was investigated by Child Protective Services for having administered cannabis vapor to Kara,” her lawyer said. “Do you recall that?”

“Yes,” she said, her voice shaking.

“Why has he done that?” her lawyer asked.

“Kara is a severe case of autism with self-injurious behavior,” said Christy, 50, a nurse practitioner. “She punches her head pretty significantly and she has caused brain damage. It prevents her from causing further head trauma and brain damage.”


As his wife spoke, Mark Zartler shifted his eyes between her and Judge Brenda Hull Thompson, who sat solemn-faced. She alone would decide the family’s fate.

ds180307_marijuana-668x418

If she ruled Mark Zartler “unsuitable” to be Kara’s guardian, that could mean big changes for the family. Christy alone would be Kara’s guardian, so if anything happened to her, Kara could become a ward of the state. To avoid that, the family would probably move to Colorado or somewhere marijuana is legal. They both have elderly parents to care for, and even so, they don’t want to leave. Texas is home.


The lawyer’s voice grew impassioned as he spoke of Mark having a child abuse record for trying to protect his daughter by using marijuana.


“In fact, paradoxically, it prevents abuse,” he said. “It prevents self-abuse. Is that correct?”


“Correct,” Christy said, nodding.


Christy’s testimony ended. Their lawyer called Mark to the stand.

As Mark passed his wife, each extended an arm toward the other and they touched hands.


Continued


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7. Connecticut: Another View: Taxing CT Community Non-Profits is Wrong  


By Benjamin Davies, The Middletown Press, March 7, 2018

MARC Community Resources, a nonprofit organization providing residential and day services to individuals with intellectual, physical and developmental disabilities throughout Middlesex County, recently received notification of denied tax exemption on several group homes, as well as two day programs owned and operated in Cromwell.
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This tax forces community nonprofits, like MARC, burdened by years of state budget cuts, to choose between costly litigation and paying taxes on property that is exempt by state law. Either of these options takes critical funding away from essential services for MARC’s program participants.


Chronic underfunding and budget cuts for essential services is making it almost impossible for nonprofits to fulfill their missions. While exempting property taxes for nonprofits does not solve the systemic funding crisis, it is a small but essential resource for nonprofit providers in an era of diminishing resources. Property tax exemptions for nonprofit organizations must be protected if they are to continue their mission-driven work of strengthening communities by providing quality, cost-effective and life-sustaining services for children and families.


The cost of operating our group home properties is set and funded by the state of Connecticut through our room and board rate. The state legislature has frozen our room and board rates for several years and we have had to absorb all increased costs to basic needs such as food, utilities, and repairs and maintenance owing to inflation. Having to divert both fiscal and human resources to battling municipalities over our charitable status further deviates from our ability to provide quality services while satisfying regulatory requirements.


Group homes are already losing money and are relying on fundraising dollars to make ends meet. We cannot be forced to pay property taxes because there are no further cuts that can be made in our group home and day services budget without compromising the health and safety of program participants. We have had to increase fundraising efforts to cover the shortfall in the cost of care, unfunded mandates and administrative and general accounting.


Continued


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8. South Carolina - Taxpayers May Have To Fund Insurance for Autistic Children 


By Tim Smith, The Greenville News, March 8, 2018


South Carolina taxpayers could have to fund insurance coverage for autistic children under a legislative proposal. The proposal that would put autistic children not covered by a 2007 bill in a high-risk insurance pool was advanced by a state Senate panel.


Both the House and the Senate have passed in different sessions another bill that would address the same issue by mandating coverage for those children left out of Ryan's Law in 2007. A House-passed version of that bill sits before the same panel that took up the new bill Wednesday. Instead of taking the House bill up, however, the panel took up the new bill that in effect asks taxpayers to pay for coverage for families who already have private insurance.


Ryan's Law mandates that the state health plan and large group policies cover treatment of autistic children, including applied behavior analysis therapy, which parents say holds the most promise for autistic children. The insurance coverage is vital for autistic children, parents say, because applied behavior analysis therapy can make a dramatic difference for the children.


The issue involves two separate problems. The first is that families, even those with coverage, are having a tough time getting treatment for autistic children because the state's Medicaid provider rates are low compared to other states. Some therapy providers have quit or moved to other states such as North Carolina, which pay much higher rates.


The other issue is requiring coverage for children left out of Ryan's Law, those in small group plans or individual plans. Lorri Unumb, an autism-awareness advocate whose son is the subject of Ryan's Law, said she believes the bill advanced Wednesday could mean higher insurance costs for families of autistic children.


Read the full article here



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9. Washington, D.C. VOR Attends AHCA / NCAL's Annual ID/DD Fly-In Event

VOR was honored to be a guest attendee at the

American Health Care Association's (AHCA) ID/DD fly-in day in DC this week.  The event was organized by Dana Haovorson, and attended by providers from around the country. Guest speakers were Rep. Jimmy Gomez (D-CA), and a panel comprised of former Senator Blanche Lincoln (D-AR), former Representative Jim McCrery (R-LA), and longtime Hill Staffers and Medicaid policy experts Dan Elling and Bob Russell.

AHCA Meeting

Hugo Dwyer (VOR), Dana Halvorson (AHCA), and Kate McSweeny (ACCSES)

 

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CALENDAR EVENTS:


                     VOR Logo No By Line

Capitol-for-Forum-crop 3
VOR's
ANNUAL MEETING & LEGISLATIVE INITIATIVE
 
HYATT REGENCY CAPITOL HILL
 WASHINGTON, D.C.
  
JUNE 9 - 13, 2018

Registration is Open!
~~~~~~~~~~~~~~~~~~
  
CLICK HERE TO REGISTER FOR THE EVENT
   
CLICK HERE TO RESERVE ROOMS AT THE HYATT

   
~~~~~~~~~~~~~~~~~~

Saturday, June 9:
Board of Directors Meeting, Committee Reports, State Coordinators' Reports on the State of our States,
Legislative Committee Reports

Sunday, June 10:
Panel Discussion: Engaging Advocacy in Your State, Guest Speakers (TBA), Legislative Agenda: Review of the materials we are presenting on Capitol Hill
Optional - Sunday Dinner At The Dubliner

Monday - Wednesday, June 11-13:
Hill Visits w. Members of Congress and Legislative Aides

MORE DETAILS TO COME!

VOR Logo No By Line
=============================

INDIANA - Task Force to Examine Support Needs for Hoosiers with Disabilities

A state plan for the support needs of Hoosiers with intellectual and developmental disabilities will get an update soon for the first time in 20 years. A new state task force aimed at helping the estimated 100,000 Indiana residents has scheduled meetings across the state.


The link to the livestream can be found here.

Dates, times and location for each meeting of the task force are as follows:

  • Wednesday, April 18, 2018, 11 a.m.--3 p.m. CT, Lafayette
  • Wednesday, June 27, 2018, 10 a.m.--2 p.m. CT, Valparaiso
  • Wednesday, Aug. 22, 2018, 11 a.m.--3 p.m. ET, New Albany
  • Wednesday, Oct. 17, 2018, 11 a.m.--3 p.m. ET, Columbia City

All meetings are open to the public and will be streamed live. Public comment will occur prior to the start of each meeting to provide input regarding services and supports for people with disabilities. Requests for accommodations for meetings of the task force should be made by contacting Kristina Blankenship at Kristina.Blankenship@fssa.in.gov at least 48 hours in advance of the task force meeting.

For more information, visit:

www.in.gov/fssa/ddrs/5455.htm.



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If you have a conference or group event that you would like posted here, please write to info@vor.com with a description
of your event.


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MEMBERSHIP MATTERS


There is Strength in Numbers. 
Keep VOR Strong!
 
The size of our membership base makes a noticeable difference to legislators, grant foundations, private donors - and to the advocacy organizations that share or oppose our views.

YOUR MEMBERSHIP COUNTS!


TO BECOME A MEMBER OF VOR

or to

RENEW YOUR MEMBERSHIP

Please click here:

Join-Renew Blue


=============================

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Volunteers Needed! Volunteers are needed for several committees and specific tasks. VOR relies on its members to perform many of its key responsibilities. Please join us, and help us to continue our mission.


=============================

Please remember to "like" VOR on Facebook, and to follow us on Twitter. Every time you share our posts or re-tweet our tweets, you are helping VOR to reach a wider audience.

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VOR   836 S. Arlington Heights Rd. #351   Elk Grove Village, IL   60007 

Email: info@vor.net           Call toll free: 877-399-4867

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