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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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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’s 2017 Membership Drive:

  

A MEMBERSHIP LETTER FOR YOUR FAMILY GROUP


As part of our 2017 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
info@vor.net




















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:
New.EP-Magazine.com















NOTICE:
Tennessee - Public Meeting - Human Rights Review Process
November 27, 2017 - December 27, 2017

The Department of Intellectual and Developmental Disabilities (Department) is giving notice through the Tennessee Administrative Register of the following Public Meeting:


The Department will be publishing the Human Rights Review Process policy, # 80.6.1. The purpose of this policy is to clarify the human rights review process requirements for people enrolled in one of the State’s 1915(c) Home and Community Based Services (HCBS) Waivers or state-funded services. This policy supersedes, in its entirety, Provider Manual Chapter 2, Section 2.9 effective 3/15/14.


This public meeting will take place on Monday, November 27, 2017, 1:00-4:30 P.M. (CST) at One Cannon Way Drive, Clover Bottom Development Center Campus 275 Stewart’s Ferry Pike, Nashville, Tennessee 37217.  Interested persons may provide written and/or oral comments to the changes made to the Policy.

Contact Solita Morris Solita.Morris@tn.gov





















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




















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)


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.
























TO BECOME A MEMBER OF VOR

or to

RENEW YOUR MEMBERSHIP

Please click here:

Join-Renew Blue






















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

Donate-button-BRIGHTER RED


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
pages so that you can see if your company participates.




























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.



December 15, 2017

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

1. THANK YOU, ARKANSAS!

The families of Arkansas have created a series of 30-Second and 1-Minute video Public Service Announcements that will air on stations throughout Arkansas. The spots are beautifully filmed and present the Arkansas Human Development Centers as a vital part of the state's continuum of care in residential services.

Thank you, Rita Hoover, Arkansas State Coordinator, for bringing these PSA's to our attention, and thank you to all of the Arkansas families who contributed to their making.

Do yourself a favor, and download and share these videos with your friends and family.

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Charles and Laura Jones describe why they feel that the Conway Human Development Center is the best option for their son Bryce:
https://youtu.be/RCSWwDEiwwg
 
Ladyman
Jack Ladyman describes why he feels that the Jonesboro Human Development Center is the best option for his son Heath:
https://youtu.be/zLpEmDdgPPQ
https://youtu.be/b3QIMiNwv5k
 
Darrell 2Darrell Pickney describes why he feels that the Jonesboro Human Development Center is the best option for his daughter Darlene:

https://youtu.be/gtTDQH1OSsg
https://youtu.be/ncKF8ZqXQC0


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2. The Fall/Winter 2017, Full Color Edition of the VOR Voice is now available for download on our website!
Included in the online edition is an article by VOR Board member and President of Murray Parent's Association Rita Winkeler of Illinois, on the importance of Intermediate Care Facilities and how they continue to serve those whose needs are not met in HCBS waiver settings.

Click here or paste this link into your browser:

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INTERNATIONAL NEWS

3. AUSTRALIA - What's Missing Is The Love

By Gail Bell, Special Broadcasting Service, December 5, 2017

Near golden sands north of Newcastle, hundreds of people with intellectual disabilities live at the Stockton Centre. Now it's set to be sold to developers. Does the government's new group home model really offer a better future, or is it just a grab for cash?StocktonExcerpt:

“The government is acting as if these are the last disability people ever to be born. There’s a new wave coming through; what are they going to do with them?”

Admissions to Stockton were frozen in the early 1990s. Today, as the residents age, those that make up the remaining cohort have a severe intellectual disability, and or a physical disability, and some have challenging behaviours. Smaller, home-style accommodation has been built, cottages, individual bedrooms with more privacy.


“At the end of thirty years the group homes will be past their use-by date,” Lorraine Yudaeff adds. “Within ten years the group houses which are currently rented will be sold to developers. The government is acting as if these are the last disability people ever to be born. There’s a new wave coming through; what are they going to do with them?”


Overseeing the recent deaths in group homes is the office of the Ombudsman for Disabilities. Wendy believes that experience with disability (not public servants shuffling paper in an office) is a pre-requisite for external parties charged with judging the effectiveness or otherwise of existing facilities.

To my question, “What is going to have to happen to make the government get the picture?” the answer comes “They don’t want to. The Minister came up here with some politicians, spent two minutes and said sorry that’s all too confronting and they went away.”


“Other countries have tried the group home solution and it hasn’t worked. People end up homeless or worse, why doesn’t Australia learn from the mistakes of others?”


Read the full article here



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4. As Zika Babies Become Toddlers, Some Can't See, Walk, or Talk

By Pam Belluck, The New York Times, December 14, 2017

As the first babies born with brain damage from the Zika epidemic become 2-year-olds, the most severely affected are falling further behind in their development and will require a lifetime of care, according to a study published Thursday by the Centers for Disease Control and Prevention.

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The study, the first to comprehensively assess some of the oldest Zika babies in Brazil, focused on 15 of the most disabled children born with abnormally small heads, a condition called microcephaly. At about 22 months old, these children had the cognitive and physical development of babies younger than 6 months. They could not sit up or chew, and they had virtually no language.

“A child might be making those raspberry sounds, but they are not making even the sort of consonant sounds like ‘mama, baba, dada,’” said Dr. Georgina Peacock, an author of the study and the director of the division of human development and disability at the C.D.C.’s National Center on Birth Defects and Developmental Disabilities.


It is unclear how many of the nearly 3,000 Brazilian Zika babies born with microcephaly will have outcomes as severe as the children in the study, but the experiences of doctors working in Brazil suggest it could be hundreds.


Continued

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NATIONAL NEWS

5. Researchers to Study Effects of Marijuana on Kids with ASD

By Sam Wood, Philly,com, December 12, 2017

Children’s Hospital of Philadelphia is pairing with an Australian biopharmaceutical company in what some advocates say could be the first major effort in the United States to study the effects of medical marijuana on children with autism.

Athena Zuppa, the director of the hospital’s Center for Clinical Pharmacology, will lead a team researching current medical marijuana patients. The hospital will not provide any cannabis products to children.


“This is truly an observational study,” Zuppa said. “We’re not giving them anything. We’re just gathering data to educate ourselves.”


Research with children who are already covered under Pennsylvania’s Safe Harbor provision — which grants parents special permission to administer medical marijuana to their children — is likely to begin in early 2018.


There is significant anecdotal evidence showing that cannabinoids, the active compounds in medical marijuana, can help with some of the symptoms of autism. Cannabis advocates say cannabinoids help improve social interaction and control repetitive behavior, and don’t cause the side effects associated with antipsychotic drugs often given to children with autism.


Continued


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STATE NEWS

6. MAINE - Maine Man Evicted for Using Pot to Calm his Seizures Now Calls Hospital Home

By Eric Russell, Portland Press Herald, September 24, 2017
This article dates back to September, but remains timely given the article above. It was sent in by our Maine State Coordinator, Darla Chafin.

His family's decision to try marijuana to alleviate seizures got Mark Madore kicked out of his federally funded group home. But the limbo he's in shows a state safety net in need of repair.
For two months, Mark Madore has called the emergency department at Redington-Fairview General Hospital home.

There are two twin mattresses on the floor in a small room where he spends most of his time – asleep and awake. Two more mattresses are attached to the wall with athletic tape to protect him when the seizures come. A small whiteboard hangs on the wall that lists basic information, including the hospital staff member assigned to him any given day.


Under the “notes” section are three words that have been there since he arrived: “Waiting for placement.”


Madore, who is diagnosed with neuromuscular disease and seizure disorder and has intellectual disabilities, is among hundreds of disabled adults who receive residential services under a MaineCare program known as Section 21.

Mark-Mado4

Until recently, the 34-year-old had lived in a group home in Embden for about a decade. He was abruptly evicted in July after he started using medical marijuana to treat his seizures, which was not authorized by the home that provided his care.


His mother, Cathy Madore, said she takes responsibility for the medical marijuana, but disagrees with the outcome. She just wanted to help her son. Instead she left him homeless.


Hospital officials estimated that the cost of care for someone in the emergency room is between $1,800 and $2,000 per day. That means that for the 60-plus days Madore has occupied a room there, it cost a total of between $108,000 and $120,000. That’s more than the cost of residential services for adults like Madore for an entire year.


Read the full story here


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7. ARKANSAS - Governor Trumpets Reduction of Developmental Disability Waiting List via Tobacco Settlement Fund

By David Ramsey, Arkansas Times, December 12, 2017
Gov. Hutchinson spoke before the state's Tobacco Settlement Commission's quarterly meeting today, trumpeting his effort to redirect some of the unused tobacco settlement money to reduce the number of people stuck on a waiting list for a Medicaid waiver program that provides home- and community-based services to individuals with developmental disabilities (DD).

The legislature this year passed Act 50, backed by the governor, which diverted $8.5 million from the settlement fund to the Alternative Community Services Waiver Program. Because the federal government also pays for a portion of the program, this also triggered the release of $20 million from the feds (providing the waiver program costs around $50,000 per person per year; the state has to pay 30 percent of those costs, with the feds picking up the rest).

These funds allowed the state to reduce the DD waiting list — which previously had 3,000 families on it — by 500. That still leaves a significant number of families without access to services, which Hutchinson acknowledged today:
This is a great success story. Of course, we can’t stop with the 500 families. My goal today is to eliminate that waiting list, and you all started that process.
In March of 2016, the governor promised to cut the wait list in half within three years.


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8. MASSACHUSETTS - Committee to Schedule Oversight Hearings on DDS System


By Dave Kassel, The COFAR Blog, December 12, 2017


In the wake of findings by the state of negligence by the staff of a human services provider that almost resulted in the death of a developmentally disabled man, a legislative committee plans to hold one or more hearings on the Department of Developmental Services system, starting next month.


A press release issued by the state Legislature’s joint Children, Families and Persons with Disabilities Committee referred to a single hearing and said it will concern “current  DDS policies, procedures, and responses to reported incidents.”


The press release did not specify a date for the hearing, but said it will be held “in the New Year.”

A staff member of the committee said last week (on December 7) that a specific date had not yet been set for the hearing, but that it would be held sometime in January. Previously, another staff member had stated that more details about the scope of the committee’s review, including whether the committee would focus on the privatized system of DDS care and whether there might be more than one hearing still needed to be ironed out.


COFAR is inviting people with information about abuse or neglect in DDS-funded group homes in Massachusetts to testify before the committee. If you have information you would like to share, please contact us.


Continued



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9. NEW JERSEY - After 134 Years in Haddonfield, Bancroft Prepares for Big Move

By Kim Mulford, The Courier Post, December 12, 2017

Jason Krell toured the new $75 million Bancroft Raymond & Joanne Welsh Campus, taking in the school's glass-walled entrances, small classrooms and wide-open halls designed to accommodate 264 children with intellectual and developmental disabilities.

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In a few weeks, his 10-year-old son, Ethan, will make the transition here from the nonprofit's campus in Haddonfield.


Change can be difficult for children like Ethan, who has autism and likes pattern and repetition. But Krell isn't worried. 


"To me, it’s overwhelming to look at this building," the Mount Laurel resident said. "We’ve been through hell and back with our kids, and sometimes, you get the feeling of hope and knowing you’re in the right place."


After five years of planning and construction, Bancroft is preparing to move students to the Walton Avenue campus from Haddonfield, where the nonprofit was founded by Margaret Bancroft 134 years ago.


Continued


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10. SOUTH CAROLINA - DDSN Interim Director Talks in Letter of Challenges, "Hypersensitive Environment"


By Tim Smith, The Greenville News, December 11, 2017


The new interim director for the state’s disabilities agency told its chairwoman before he took over the job that the agency was not in crisis but faced challenges in a “hyper-sensitive environment,” according to a letter introduced in a federal court case.

The lawyer for the plaintiff in the case, Patricia Logan Harrison, introduced the letter from Pat Maley as part of her request to depose Maley and the new director of the state’s Medicaid agency, Joshua Baker, in a lawsuit brought by Johnny Timpson of Greenville.

SC-DDSN

She argued in her motion that Maley had no working experience in the disability field prior to being hired by the state Department of Disabilities and Special Needs earlier this year as program manager and that Baker had no experience in the disability field or with Medicaid prior to his being hired by the Department of Health and Human Services last year.


“None of them had prior experience in managing programs for persons who are poor and disabled, or managing Medicaid funds, except for work performed while working for then Gov. Nikki Haley, who claims to have no knowledge of matters at issue in this lawsuit,” Harrison wrote.


The lawsuit filed last year while Haley was still governor alleges that Timpson was beaten, burned, subjected to physical, emotional, sexual abuse, neglect and financial exploitation while in the DDSN system. He has named a number of defendants in addition to Haley, including state and local agencies and officials.


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CALENDAR EVENTS:


                     VOR Logo No By Line

SAVE THE DATE!

Capitol-for-Forum-crop 3
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
=============================


TENNESSEE - Public Meeting - Human Rights Review Process - November 27, 2017 - December 27, 2017

The Department of Intellectual and Developmental Disabilities (Department) is giving notice through the Tennessee Administrative Register of the following Public Meeting:


The Department will be publishing the Human Rights Review Process policy, # 80.6.1. The purpose of this policy is to clarify the human rights review process requirements for people enrolled in one of the State’s 1915(c) Home and Community Based Services (HCBS) Waivers or state-funded services. This policy supersedes, in its entirety, Provider Manual Chapter 2, Section 2.9 effective 3/15/14.

Contact Solita.Morris@tn.gov



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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:

  • Tuesday, Dec. 19, 2017, 11 a.m.--3 p.m. ET, Bloomington
  • Friday, Feb. 23, 2018, 10 a.m.--2 p.m. CT, Boonville
  • Wednesday, April 18, 2017, 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.


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