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 Speaking out for people with
intellectual & developmental disabilities





 VOR

836 S. Arlington Hts Rd.  #351

Elk Grove Village, IL  60007





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

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DOUBLE YOUR DONATION?

Many companies and employers match employee donations to non-profit organizations like VOR.

We now feature a quick and easy link on our Membership & Donation
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SAVE THE DATE!

VOR'S
ANNUAL MEETING & LEGISLATIVE INITIATIVE

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will be held at the

HYATT REGENCY CAPITOL HILL
in
WASHINGTON, D.C.

JUNE 8 - 13, 2018









































VOR Membership Drive:

  

A MEMBERSHIP LETTER FOR YOUR FAMILY GROUP


As part of our 2017-18 Membership Drive, we have created a letter that we hope you will send out to the members of your family organization. The purpose of the letter is to show the other families in your group who advocate locally that VOR can help them advocate nationally and unite with families in other states with shared experiences.


Please ask your family group to print copies of this letter and include them in their mailings. You may include this with your newsletters, advocacy campaigns, or post it to your group's website. You may also consider including this letter with the "Thank You" letters that go out to members to after receiving donations to your group.


Download the Membership Letter here



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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.

















































FREE OFFER
 


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

Click here to subscribe:
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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'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:
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.


















































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)


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.









































January 26, 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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VOR and YOU


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

Registration Begins February 2

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
Opt-in Dinner At The Dubliner

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

MORE DETAILS TO COME SOON

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NATIONAL NEWS

1. Congress Passes, Trump Signs RAISE Family Caregivers Act "Elevating Caregiving To A Priority
 
By Robin Seaton Jefferson, Forbes, January 34, 2018

In the midst of one of the most divisive political landscapes in America’s history, members of Congress as well as President Donald Trump have shown there is one thing we can all agree on--caregiving.
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It’s a topic that we all face or will face in one way or another in our lifetime, and with the Congressional passage this month and signing yesterday by the president, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act is poised to give Americans some hope on the caregiving front.

The bi-partisan law directs the Secretary of Health and Human Services to develop and sustain a national strategy to recognize and support the more than 40 million family caregivers in the United States. It also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government and others may take to help caregivers.

Championed by AARP, the nation’s largest non-profit, non-partisan organization dedicated to older Americans, the legislation was introduced in the U.S. Senate by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), and in the U.S. House by Representatives Gregg Harper (R-MS) and Kathy Castor (D-FL).


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2. Medicaid Home and Community-Based Services: Results from a 50-State Survey of Enrollment, Spending, and Program Policies

 
By Molly O'Malley Watts & MaryBeth Musumeci, The Kaiser Family Foundation, January 19, 2017


Over the past three decades, increased access to Medicaid HCBS has resulted in greater enrollment in and spending on these services.  The size and scope of Medicaid HCBS programs continues to vary across states.  Section 1915 (c) waivers continue to account for the majority of HCBS enrollment and spending.  While working to expand beneficiary access to HCBS, states also have been implementing the ACA’s Medicaid expansion.  The data do not support a relationship between changes in HCBS enrollment or waiting lists and a state’s Medicaid expansion status.  States also continue to focus on policy changes to implement federal regulatory requirements, including the MLTSS provisions of the Medicaid managed care rule, the DOL minimum wage and overtime rule, and the home and community-based settings rule, with most states reporting policy changes in these areas.  As the population ages and medical advances continue to emerge to support people with disabilities living longer and independently in the community, stakeholder interest in state trends in Medicaid HCBS enrollment, spending, and program policies is likely to continue.


Read the full report here


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3. Preschoolers With Disabilities Inordinately Suspended, Report Finds
 
By Shaun Heasley, Disability Scoop, January 22, 2018

Students with disabilities represent just 13 percent of the nation’s preschoolers, but a new report finds they account for three-quarters of all suspensions and expulsions.


The figures come from an analysis out this month from the Center for American Progress. Researchers looked at data from the 2016 National Survey of Children’s Health, a regular government poll of parents across the country about their kids’ physical and mental health.


Parents surveyed were asked if their child had a current diagnosis of various medical or behavioral conditions and if their child had been asked to stay home from or no longer attend child care or preschool anytime within the previous year because of behavior issues.

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Kids ages 3 to 5 with behavioral problems were 43 times more likely to be suspended or expelled than their typically-developing peers, the report found. The odds were 10 times greater for those with autism and 7.5 times higher for children with developmental delays.


“Children with disabilities and children of color — many of whom come from low-income families — have the most to gain from high quality preschool and k-12 education, and yet the most to lose. Expelling or suspending children who are most in need of high-quality, supportive learning undermines education’s role as the great equalizer and will only worsen existing disparities,” said Winnie Stachelberg of the Center for American Progress.


The findings come as the U.S. Department of Education is reportedly considering whether to do away with Obama-era guidance designed to prevent children with disabilities and those from minority groups from being disproportionately suspended or expelled.


Continued


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STATE NEWS 

4. Virginia - Lynchburg Area Legislators File Bills to Keep Central Virginia Training Center Open

By Margaret Carmel, The News & Advance, January 20, 2018

As the clock ticks down to the planned closure of Central Virginia Training Center in 2020, three Lynchburg-area state lawmakers are fighting back.


Sen. Mark Peake, R-Lynchburg; Del. Scott Garrett, R-Lynchburg; and Sen. Steve Newman, R-Bedford County, filed bills and budget amendments last week for the 2018 General Assembly session that aim to stop the impending closure of the state-run Madison Heights facility that cares for those with physical and intellectual disabilities.

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The closure is part of a 2012 settlement agreement with the U.S. Department of Justice that stemmed from an investigation by the department into CVTC. As part of the agreement, the Virginia Department of Behavioral Health and Developmental Services will close four of its five training centers in favor of moving the majority of those under state care to community group homes.



Peake and Garrett each filed identical bills in their respective chambers that would keep the facility open indefinitely. Garrett’s bill, HB 1421, has been referred to the Appropriations committee, where he is a sitting member. On the Senate side, Peake’s SB 835 has been referred to the Education and Health committee. According to the Virginia Legislative Information System, the date for when the bills will be discussed has not been set yet.


In an interview last week, Garrett said he supports keeping CVTC open because he believes community group homes are not equipped to take care of residents who have complex medical needs, and training center care is the most appropriate for those patients. Coupled with CVTC’s close proximity to Lynchburg General Hospital, he believes CVTC is ideally suited to continue serving those with disabilities.


Continued


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5. North Carolina - Thousands with Disabilities in N.C. Wait Years for Services

By Alex Olgin, WFAE Charlottesville, January 20, 2018


The recent scandal at Cardinal Innovations Healthcare angered many individuals with intellectual and developmental disabilities waiting for services. The state took control of Cardinal in November because the behavioral healthcare organization spent excessively on salaries, parties and severance packages. Across the state there are almost as many people with intellectual and developmental disabilities waiting to get a complete array of home and community services as are currently getting them. For families it can last years, be frustrating and feel unfair. 


Tonya Burtrum and her 11 year old son Christian are very close. “He’s my side kick he’s always on my right hip,” she said. Christian contracted meningitis as a baby. Tonya said she doesn’t work so she can take care of him. They live off of disability payments. Tonya said Christian has permanent brain damage, seizures, memory problems, as well as other developmental issues. Still he dreams.


“I want to be an opera singer,” he said confidently.  

He’s been on the waiting list to get home and community services through Medicaid for nine years, said Tonya.


She lives in the Charlotte area so she’s on Cardinal Innovations Healthcare’s waiting list. Because of privacy laws Cardinal couldn’t discuss the details of his case.


Cardinal and each of the state's behavioral healthcare organizations keep their own waiting list. All told, as of early January, there were more than 11,700 people waiting to get services throughout the whole state. Only about a thousand more actually get the full array of services.

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Individuals with intellectual and developmental disabilities are added to the wait list of the behavioral healthcare organization based on the region they live in.

What keeps Tonya up at night is what happens down the road if he’s still waiting when she dies.


“How do you leave them? Who takes care of them? You live with that every day,” said Burtrum. “That’s the scariest.”


North Carolina, like many other states, runs its own program to serve people like Christian with federal Medicaid funds. The advantage to this system is it gives states flexibility and in theory efficiencies in the home and community based services they offer. The downside is that there is a limited amount of funding. So not everyone gets these services.


People can be on the waiting list for between five to ten years, according to the North Carolina Department of Health and Human Services.


Continued



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6. Idaho - SWITC to Open Secure Facility for Residents Who Pose a Safety Risk

By Emily Lowe, Idaho Press-Tribune, January 20, 2018

The Idaho Department of Health and Welfare intends to begin using a secure facility at the Southwest Idaho Treatment Center campus this year.


State lawmakers approved the Secure Treatment Facility Act in 2017, which gives the Department of Health and Welfare “the power to establish, operate and maintain a secure treatment facility for persons with an intellectual or developmental disability who pose a substantial threat to the safety of others.”

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The treatment center in Nampa houses patients who have developmental disabilities with the goal to help them transition back into the community. The center has more than 20 residents and a staff of over 100 people.


The secure facility is an important step for the SWITC campus, which has come under scrutiny this past year. The Idaho Press-Tribune has covered stories ranging from allegations of abuse by staff, a death of a resident at the center, and residents leaving the facility and causing damage to property and injuries to members of the community.

The turmoil at the center “goes against what the department is for,” Health and Welfare Director Russ Barron told the Idaho Press-Tribune last week.


Previously, the center's operating procedures included staff following residents who leave the facility and attempting to prevent the residents from harming others. When witnessing threatening behavior, protocol called for staff to call police, according to an email sent in August by department spokesman Chris Smith.


But Barron said the center can no longer wait to watch and respond to threatening behavior. The secure facility would be a major transition that Barron said is important to providing safety to the residents, staff and the community. The secure facility, which will hold four beds, is already on campus but is not being used, he said.


Continued


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7. New York - Opinion: How Medicaid Cuts Could Hurt My Daughter - And Thousands of Others

By Joseph Del Broccolo, Newsday, January 21, 2018

With growing concern, I have heard leaders in Congress talk about reducing spending for Medicare and Medicaid as they figure out how to pay for their new tax cuts.


As board president of AHRC Suffolk — an agency that provides educational, vocational, residential, employment and respite services for 2,500 people through 42 local facilities — I know the good that government funding does. AHRC Suffolk receives $60 million a year from federal Medicaid programs.

But I have a personal stake, too.


In 1972, when my first child, Ellen, was born, she was a beautiful little pink bundle who bore her mom’s first name and my last name. It was a moment of joy and truth. I imagined what she would grow up to be, her role in life and whom she might marry. I knew I had to step up as a father and provide for her future.


In her first year, her development seemed to be within the normal range, including her laughter, crying and responses to us. But the next year, our optimism came crashing down. She was not talking or walking as she should have, especially compared with a cousin of about the same age. Doctors did neurological testing and determined that she had suffered some brain damage, perhaps at birth.


We entered a world of uncertainty. Doctors told us that our little girl would not speak or have proper motor function. Our hopes were shattered.


We went to various professionals to encourage her development, but were not satisfied. When she was about 4, we enrolled her in AHRC’s day classes at its Educare Center in Islip. She made progress, displaying better recognition of her family and surroundings, and responding to some simple requests — to wipe her mouth, for example, to sit down or prepare to leave. However, her cognitive development is that of an 18-month-old child. Today, she can say just two words: happy and mama.


At age 23, she became a full-time resident of AHRC’s Intermediate Care Facility in Westhampton. Later, she moved to AHRC’s facility in Shoreham, where she lives today.


All of her comforts, medical care, transportation and education — costing about $182,000 a year — come under the auspices of state and federal Medicare and Medicaid programs and AHRC. It is a wonderful example of the support provided for people with disabilities, and our family sees it as the hand of God reaching down through our governments. What Ellen and her family and friends can’t do, we the people do for them.


But a hard realization has come to pass. If Congress takes away crucial funding from people like Ellen who need it, AHRC Suffolk and similar agencies will start closing.


Continued


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DENTAL CARE

8. New York - ECMC Dentists Treasure Challenges of their Special Patients


By Scott Scanlon, The Buffalo News, January 19, 2018 Joseph Del Broccolo, Newsday, January 21, 2018

The fear, pain and uncertainty that come with going to the dentist can unnerve even the healthiest among us. Imagine what it can be like for those with autism, dementia, physical limitations, developmental disabilities or cancer.

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These are the patients in the working world of Drs. Elizabeth Kapral and Maureen Sullivan, two of a dozen dentists who help staff three dental clinics at Erie County Medical Center.

 

“You have to have a passion for this work, and also be a leader. You have to be able to make decisions, and articulate them with physicians,” said Sullivan, chief of the Department of Dentistry’s Division of Oral Oncology and Maxillofacial Prosthetics. She has specialized for a quarter-century in providing complex dental care for patients with head, neck and other cancers, first at Roswell Park Comprehensive Cancer Center and, since 2014, in her current post.

Sullivan is a mentor to Kapral, 33, who grew up outside Syracuse and splits her time on the ECMC campus in dental clinics at The Center for Cancer Care, the main hospital building next door, and the nearby Terrace View long-term care facility.


Some of their work is so intricate – or conducted on patients unable to sit through a checkup, cleaning and dental procedure – that it must be performed in an operating room. The job also is a path far less traveled by dental students who can see more patients and make more money in a private dentistry practice.


This helps explain why the federal Health and Human Services Health Resources and Services Administration has given ECMC a five-year grant worth more than $760,000 to provide Kapral extra training so that she can continue to fine-tune ways treat her patients – and teach dental students and residents the skills they will one day use to do the same.



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8. Utah - Dental Office for Those with Intellectual Disabilities Reopens

By Braley Dodson, The Daily Herald, January 20, 2018

Some of Featherstone Ridge Dental Clinic’s patients haven’t been seen by a dentist in more than 20 years.


“We saw things I have never seen in private practice or in the USDC (Utah State Developmental Center),” said Jennifer Peterson, a dental assistant in the clinic, during the clinic’s reopening ceremony Thursday morning.


The Featherstone Ridge Dental Clinic is located on the grounds of the Utah State Developmental Center in American Fork. It sees patients with intellectual disabilities who do not live at the developmental center and provides dental care that’s not covered by Medicaid. The clinic also offers general anesthesia at no cost to the patient or their family.


Peterson has seen patients come from Logan, Price and St. George to go to the clinic.


The clinic has seen more than 169 patients since its 2015 opening, with 90 undergoing general anesthesia. There are 79 new patients scheduled to be seen by the clinic and 203 people are awaiting consultation.


The clinic reopened with a “floss cutting” Thursday morning after receiving funding from the state Legislature for improved resources and additional staff. It opened in 2015 with $200,000 in startup funds.




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IN MEMORIUM

Donald Vitkus, Inspirational Survivor of The Belchertown State School, Dies at 74

By Dave Kassel, The COFAR Blog, January 26, 2018

Donald Vitkus, a survivor of the former Belchertown State School, whose life became an inspiration to many in the disabled community, died Wednesday of complications from a brain tumor.

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Many of VOR's members will remember Donald Vitkus. A long-time member of our organization, Donald attended several of our Annual Meetings in D.C. Donald's own personal story resonated with us all, and we remember him fondly as we grieve his passing.



Vitkus was the subject of a book published in 2016 by Ed Orzechowski, vice president of COFAR and a founding member of the Advocacy Network, an organization for families and persons with developmental disabilities in western Massachusetts.


Orzechowski’s book, “You’ll like it here,” chronicled Vitkus’s childhood at Belchertown in the 1950s, and his life afterwards in which he dealt with lasting emotional effects of his experiences in the institution. After an initial failed marriage and a literal search with his son for his past among Belchertown records, he found his calling in recent years as an advocate for persons with developmental disabilities.


Vitkus’s wife, Patricia, said there will be a memorial service in Massachusetts at a later date.


Vitkus was sent by a foster family to Belchertown in 1949, when he was six years old.  He had a tested IQ of 41 and was labeled “a moron” in the state school records, according to Orzechowski’s book.  In fact, that assessment of Vitkus cognitive ability and similar assessments of many of his peers at Belchertown proved to be wrong. He and many of his fellow “inmates” had to use their wits to survive there.


Continued


Donations in Donald Vitkus' Memory may be sent to the Advocacy Network, PO Box 2071, Amherst, MA 01004-2071


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CALENDAR EVENTS:


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VOR'S
ANNUAL MEETING & LEGISLATIVE INITIATIVE
 
will be held at the

HYATT REGENCY
CAPITOL HILL
in
WASHINGTON, D.C.

JUNE 8 - 13, 2018
VOR Logo No By Line
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AHCA’s ID/DD Hill Fly-in Event March 7, 2018

AHCA’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington DC for AHCA’s annual Hill Fly-In event on Wednesday, March 7, 2018.  Participants will hear from Congressional speakers and others.  The event runs from 8am – 10:30am ET.  After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.  


If you have any questions relating to this event or would like to register (it is free to attend, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services, Dana Halvorson.
 
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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:

  • Friday, Feb. 23, 2018, 10 a.m.--2 p.m. CT, Boonville
  • 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:

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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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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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