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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!

We are only as strong as our supporters

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Please keep your membership current!



If you are unsure when your membership will expire, please write to
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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.




















































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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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:
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VOR
2018
ANNUAL MEETING & LEGISLATIVE INITIATIVE
Capitol-for-Forum-crop 3

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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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























March 16, 2018

VOR Weekly News Update
News and views for VOR Advocates

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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 25, 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 25, 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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FEATURED STORY

1. Influential Parent Group At Sonoma Parent Center Looks To Uncertain Future 

It was a bittersweet goodbye Saturday when several dozen parents, siblings and other conservators of people still living at Sonoma Developmental Center gathered tearfully for the last time on the Eldridge campus.

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The Parent Hospital Association, which has fought, often fiercely, for the rights and care of residents since the 1970s — frequently raising their voices in Sacramento — mourned their lost battle to keep at least a part of the center open for clients with severe medical and behavior issues they fear the community isn’t equipped to handle.

But they also made their last on-campus meeting a time to recognize people they called “Heroes with Heart.” Honorees included a half-dozen lawmakers and advocates who they say have helped ensure that the welfare of the center’s remaining residents stays at the forefront as the state presses forward with plans to close it at the end of the year.


The group singled out state senators Mike McGuire, D-Healdsburg and Bill Dodd, D-Napa, whose districts each include parts of the 860-acre campus, and Supervisor Susan Gorin, who represents Sonoma Valley. They also recognized Richard Dale of the Sonoma Ecology Center and John McCaull of the Sonoma Land Trust, who have been working with a coalition of interested groups including the county, to try to keep some services for the developmentally disabled on the site and to ease the impact of the closure on residents and employees as well as to make sure the prime property at the base of Sonoma Mountain, which includes a multitude of buildings as well as vast open spaces, trails, a camp and a lake, is preserved and maintained in some form for public use.

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Kathleen Miller, co-president of the parent group, whose son, Danny, is autistic and suffers from mental illness, had pushed for the state to set aside some part of the aging campus for a treatment center for people like her son who she believes will have a hard time adjusting in the community. The state instead, is creating four homes sprinkled throughout the greater Bay Area especially equipped to deal with clients with difficult behavior problems, McGuire said.


But Miller thanked officials for trying and called out Gorin for pushing hard. “Susan never stopped talking about that position. It wasn’t always a popular position to take but Susan is not a person that is deterred in her commitment and her belief by what is politically expedient,” she said.


They claimed one victory with the opening last week in Santa Rosa of an $11.5 million comprehensive health care clinic especially geared to people with developmental disabilities and headed up by Dr. Anne French, who was a physician at SDC for 11 years. The parents group included in their day of thanks Naomi Fuchs, the chief executive officer of Santa Rosa Community Health, for helping to see it to fruition.


“It goes to our core values and mission that health care is a fundamental right for all people and that everyone deserve the same opportunity for a full and meaningful life,” Fuchs told the group of largely older and elderly family advocates, many of whom have been watching out for the welfare of their disabled children and siblings at SDC for decades.


Read the full story here


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NATIONAL NEWS

2. Medical Schools Adding Focus on Developmental Disabilities  

By Courtney Perkes, Disability Scoop, March 12, 2018

An innovative new program is aiming to ensure that the next generation of doctors is far more prepared to treat the needs of those with intellectual and developmental disabilities.

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A half-dozen medical schools across the country are already part of the effort dubbed the National Curriculum Initiative in Developmental Medicine. Led by Dr. Priya Chandan at the University of Louisville, the group will ultimately expand to include 12 schools that will each design and implement their own curriculum covering communication and clinical skills.


“Having more providers trained in developmental medicine and taking care of this population across the lifespan will result in better access to care and also better quality of care,” Chandan said.


Since the program began at the University of Louisville last year, for instance, all second-year medical students now meet with Special Olympics athletes to learn about their needs. A fourth-year elective rotation at a clinic treating patients with intellectual and developmental disabilities has drawn students whose specialties vary from general surgery to obstetrics/gynecology, Chandan said.


Continued


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3. Autism Symptoms Rarely Isolated, CDC Researchers Say 

By Michelle Diament, Disability Scoop, March 16, 2018

Nearly all children with autism are dealing with at least one other condition — and often several — ranging from anxiety to attention deficit hyperactivity disorder, sleep, behavioral and gastrointestinal issues, a new study suggests.


In an analysis of records on almost 1,900 kids on the spectrum, researchers found that over 95 percent presented with at least one issue in addition to autism.


The findings come from a study published online this month in the Journal of Autism and Developmental Disorders led by researchers at the U.S. Centers for Disease Control and Prevention.


The study relied on data collected from five communities across the country on 4-year-olds and 8-year-olds through the 2010 Autism and Developmental Disabilities Monitoring Network. The surveillance program — which is used to establish the government’s rate of estimated autism prevalence — relies on health and educational records.


Continued

 

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VOR and YOU

Screen Shot 2018-03-02 at 5.14.45 PM copy
Reprint:
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).

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.

Please see our website to read or download testimony or to watch the video of the hearing

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DENTAL CARE

4. Neglected For Too Long: Dental Care for People with Intellectual & Developmental Disabilities

National Council on Disability, via EP - Exceptional Parent Magazine, March 14, 2018


Fall 2017

This policy brief is designed to provide insight concerning the lack of dental care many people with intellectual and developmental disabilities (I/DD) continue to experience due to a shortage of properly trained dental care providers and, consequently, a lack of dental care providers willing to provide that care.

The brief will provide recommendations regarding how to begin to rectify the problem, including modifying dental school accreditation and professional ethics requirements. It will also recommend that Congress amend the Public Health Service Act, thereby providing more public funding and student loan debt forgiveness to improve dental care.

Introduction

Unfortunately, interactions with patients who have disabilities may become uncomfortable when the care providers themselves are unfamiliar with their disabilities. This may lead to a lack of care and, accordingly, a lack of preventive care. Adults with disabilities are four times more likely to report their health to be only fair or poor than people without disabilities. More specifically, studies have shown that adults with developmental disabilities are at risk for multiple health problems including poor oral health. Further, in 2002, the U.S. Surgeon General reported that, compared with other populations, “adults, adolescents, and children with [intellectual disability (sic)] experience poorer health and more difficulty in finding, getting to, and paying for appropriate health care.”


There are multiple factors to consider as to why people with I/DD face challenges in finding proper care, including, among others, guardianship complications and compensation. Often times providers are concerned about the length of time it might take to treat just one patient with I/DD. As noted in NCD’s 2005 publication The Right to Health: Fundamental Concepts and The American Disability Experience, dental care is a frequently forgotten area within the overall health care equation; and dental offices are often inaccessible and their equipment may not accommodate many disabilities. As was also noted, even when the physical environment has been adapted, a lack of understanding of disability issues among health professionals can minimize the effectiveness of the services provided, thus creating another roadblock for those claiming their health care rights.


Insufficient dental school training in this space is part and parcel of these phenomena.


While laws such as the Rehabilitation Act and, more broadly, the Americans with Disabilities Act are useful tools for claiming one’s right to accessible health care, including dental care, the cost to litigate such cases is not inexpensive. It is prudent to look for solutions to a problem before the need for litigation arises. To begin with, NCD recommends the American Dental Association review its current Principles of Ethics and Code of Professional Responsibility and make certain modifications to better reflect the rights of people with disabilities. Finding financial incentives through government programs for care providers to train for and treat people with I/DD is also worth considering.


The lack of proper training among dental students is among the most rooted problems. These future care providers are not adequately exposed to the I/DD population during their education to begin with. While there are some dental programs across the United States that do train their students in the care of patients with I/DD, a sample of which are examined here as potential models for the creation of other such programs, NCD recommends all dental students have more robust training in the care of I/DD patients. As such, a modification by the Commission on Dental Accreditation is also worth examining.


Continued

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STATE NEWS  

 
5. New Jersey - Fix Medical Marijuana Program, Phil Murphy's New Health Commissioner Told 


By Susan K. Livio, New Jersey Advance Media, March 9, 2018

Three of Gov. Phil Murphy's cabinet nominees easily won approval from a state Senate committee Thursday, including the new health commissioner who pledged to improve the state's notoriously restrictive medicinal marijuana program. Praising their "amazing" resumes, the Senate Judiciary Committee approved Shereef Elnahal as Health Department commissioner and Carole Johnson as Human Services commissioner. The panel spent the most time questioning Elnahal and offering suggestions on what his priorities should be as New Jersey's top health official.


Making medicinal marijuana more accessible to patients beyond the five dispensaries serving nearly 16,000 should be at or near the top of the list, said Chairman Nicholas Scutari, D-Union, and state Senate Majority Leader Loretta Weinberg, D-Bergen.


"Wherever we go on marijuana -- whether it's legalization, decriminalization -- I think it is really imperative this gets strengthened out very quickly, so medical marijuana program actually helps the people it was designed to help," Weinberg said.


Members of the committee also asked about other pressing health issues.


Weinberg said she was concerned about the impact on people with intellectual and developmental disabilities from Gov. Chris Christie's decision to close two developmental centers, and their "movement into group homes, some of which are not suitable to care for them."

Since her nomination seven weeks ago, Johnson she has been meeting with people who live and work at the state's five developmental centers, the private companies that operate community housing, and concerned families.


"I think it's important we continue to have a robust conversation in New Jersey about the continuum of services, ensuring people have choice and families are able to get the care that is most appropriate for their loved ones," Johnson said.


The full 40-member Senate must approve the nominations to make them permanent.


Continued


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6. Maine - Opinion: Care for Disabled Adults Needs Better Oversight 

Editorial Board, The Portland Press Herald, March 12, 2018

A federal report released last year on the way Maine cares for adults with developmental disabilities revealed a flawed system lacking real oversight.


Not only did the Department of Health and Human Services fail for 21/2 years to follow federal requirements and state law in investigating incidents in which care was compromised, but there was no one to make sure that it did. In a fractured system of care overseen by a massive department with many complex responsibilities, it was too easy for things to fall through the cracks.

Maine 2

Two bills now before the Legislature would correct that, providing checks and balances on the care of hundreds of intellectually disabled adults who live in group homes under supervision of DHHS. Lawmakers should pass these bills, and give these Mainers and their families the protection they deserve.


The report, released last August from the U.S. Office of Inspector General, found that community-based providers regularly failed to report to the state incidents in which adults in their care were taken to the emergency room. Of the “critical incidents” reported to the state – such as hospital visits, abuse and neglect claims, medication issues, or exploitation – just 5 percent were investigated by DHHS. The report also found that DHHS failed to investigate the deaths of 133 individuals in state care. The department argued this point, saying it had in fact further examined 54 of these deaths, but could not provide documentation.


Following the publication of the report, families reached out to the Portland Press Herald to say they had experienced a number of problems, including group homes in poor condition and a lack of communication from DHHS.


Following one of the recommendations in the OIG report, L.D. 1676, from Rep. Dale Denno, D-Cumberland, would create a position within DHHS for a registered nurse who would review all deaths and serious injuries within the system, and forward those that need closer examination to a cross-disciplinary panel. The minority report on the bill suggests instead using a similar body with the Office of the Attorney General, which could be satisfactory if that panel can handle the workload.


L.D. 1709, from Rep. Jennifer Parker, D-South Berwick, would re-invigorate the Maine Development Services & Advisory Board. The independent board previously reviewed deaths of adults under state care to look for trends and systemic problems, and report annually to the governor and Legislature. However, DHHS stopped sending records to the board, and Gov. Paul LePage stopped acting on member nominations, following a dispute over confidentiality, stopping its work.


Together, these bills will bring much-needed internal and external oversight to a system that desperately needs it. DHHS may say it is fixed, but the families of Mainers with developmental disabilities deserve more than those assurances. They need to know that if things go wrong again, this time, someone will be watching.


Continued


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7. New Jersey - Opinion: NJ Care Professionals Deserve Better Wages 


By Paula Solomon, The Courier-Post, March 12, 2018

Pay isn’t everything about a job, but it should, at the very least, compensate for the skills needed to do it. Tragically, direct support professionals (DSPs) – the key staff who support individuals with intellectual and developmental disabilities (I/DD) like my 26-year-old daughter – are not afforded fair pay for the complex and challenging work they do.

Help Wanted

DSPs in New Jersey are paid near poverty-level wages, causing many to rely on government assistance and work multiple jobs just to get by. It’s also contributing to a nearly 44 percent turnover rate in the field that’s jeopardizing the system that enables over 30,000 residents with I/DD to live as independently as possible in New Jersey communities.


It’s heart-wrenching seeing how the revolving door of DSPs is impacting my daughter. During her day program, she’s had to adjust to nine new DSPs in less than five years. Her last DSP left over a month ago and the position remains vacant, with different substitutes filling in each day. The lack of consistency brings her anxiety and hinders her progress. Paying DSPs a fair living wage would begin stabilizing this essential workforce and helping the thousands of individuals with I/DD who rely upon them lead more successful and enriching lives. It’s time for Gov. Phil Murphy and the New Jersey Legislature to make a living wage for DSPs a priority.


Read the letter here


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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.


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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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