Click to view this email in a browser



VOR Logo No By Line 3

A Voice Of Reason

Speaking out for people with
intellectual & developmental disabilities

 







 VOR

836 S. Arlington Hts Rd.  #351

Elk Grove Village, IL  60007





  web icon   www.vor.net


    facebook-icon 2       /VOR



   twitter_logo   @VOR_NET



    YouTube 3    VOR4Choice



    envelope icon     info@vor.net

 






Please 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.


























Membership Matters!

We are only as strong as our supporters

Join-Renew Blue

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.






















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





















volunteer_hands

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.


























FREE OFFER
 


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

Click here to subscribe:
New.EP-Magazine.com



































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

Blue Act Now Button

























PRESS CONTACTS NEEDED!

presse-2


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
























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.

Donate-button-BRIGHTER RED

































March 2, 2018

VOR Weekly News Update
News and views for VOR Advocates

Pussy Willows 2

grey_box_top.gif

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

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

   
Capitol-for-Forum-crop 3
~~~~~~~~~~~~~~~~~~

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

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

VOR and YOU

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

The House Judiciary Committee will convene on March 6th to examine class action lawsuits against ICF's/IID. The issue before the committee centers 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.

Chairman Bob Goodlatte (R-VA) was co-sponsor of previous legislation aimed at informing stakeholders of these lawsuits, originally sponsored by Rep. Barney Frank (D-MA).

Testimony on behalf of VOR famiilies will be provided by
Martha Bryant - Mother and RN, BSN, of Virginia, Caroline Lahrmann - Mother, President of Disability Advocacy Alliance and VOR Ohio State Coordinator Peter Kinzler - Father and longtime VOR member, Legislative Committee Chair, and denizen of Capitol Hill.

Opposing testimony will be given by Alison Barkoff, Director of Advocacy at the Center for Public Representation,
working on policy and litigation related to community integration and inclusion.

VOR has been advocating for openness and transparency in these lawsuits, and to give families the right to be informed and allowed to refuse to be named as part of the class. These lawsuits are expensive for families, and use taxpayer dollars to work against their interests and close their facilities. One such case, Ball v. Kasich, is currently being defended in Ohio by Ms. Lahrmann and others. Previous cases have taken place in other states, including Illinois, Arkansas, California, and Pennsylvania.

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


2. Registration and room reservations are open for VOR's 2018 Annual Meeting and Legislative Initiative

In case you missed the notice above, we are proud to announce that registration is open for the 2018 Annual Meeting and Legislative Initiative.


We hope that you will register early, which 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!

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


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


3. Feds Name New National Autism Coordinator 

By Michelle Diament, Disability Scoop, March 2, 2018

The federal government has a new point person for autism-related research, services and supports.


U.S. Secretary of Health and Human Services Alex Azar tapped Ann Wagner this week to be the national autism coordinator.


Established under the 2014 Autism CARES Act, the coordinator is charged with working across federal agencies to ensure implementation of autism activities.


Wagner currently serves as chief of the biomarker and intervention development for childhood-onset mental disorders branch at the National Institute of Mental Health’s Division of Translational Research and she oversees the NIMH Autism Research Program.


Continued


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

4. Trump Directive Spurs Proposal to Delay IDEA Rule 

By Michelle Diament, Disability Scoop, February 27, 2018


ds170718_devos-668x418The Trump administration is officially proceeding with plans to delay an Obama-era rule that aimed to ensure students from certain backgrounds aren’t wrongly placed in special education.


The U.S. Department of Education is issuing a notice in the Federal Register on Tuesday proposing a two-year delay of the so-called “significant disproportionality” rule, which was finalized in the closing weeks of the Obama administration.


The Individuals with Disabilities Education Act requires states to flag school districts with high rates of students from particular racial or ethnic groups identified as having disabilities, placed in restrictive settings or subjected to discipline.


However, states have traditionally used different measures and the Obama administration claimed that as a result few schools were ever identified. The rule, which is slated to take effect July 1, sought to establish a national standard.


But by last fall, news surfaced that Secretary of Education Betsy DeVos and her team were eyeing the regulation for further review under an executive order from President Donald Trump requiring all federal agencies to identify regulations for “repeal, replacement or modification.” As of December, the Education Department began moving to delay the rule’s implementation.


“The department is concerned, however, given the public comments it has received in response to its general solicitation in 2017 on regulatory reform, that the Equity in IDEA regulations may not appropriately address the problem of significant disproportionality,” reads this week’s Federal Register notice.


Continued



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

STATE NEWS

5. Illinois - Staff Locked Residents with Developmental Disabilities in Filthy, Bedbug-Ridden Facility and Left    

By Mike Nolan & Robert McCoppin, The Chicago Tribune, February 23, 2018

Dixmoor’s police chief said a criminal investigation is being launched after 35 people were evacuated from a squalid, bedbug-ridden local health care facility.

Mother's House

No staff members were on-site and responders had to force their way into the locked care center Thursday night after police received a call from a resident seeking help, police Chief Ron Burge said.


The facility known as The Mothers House is run by the nonprofit Value Care Centers, but Burge said it was operating without a license and his department has previously attempted to shut it down. Calls to Value Care Centers locations went unanswered Friday. The Mothers House website says the facility at 14127 S. Leavitt Ave. cares for people with behavioral and developmental disabilities.


The police chief said 30 men and five women were evacuated late Thursday amid “deplorable” conditions in the center, tucked back in a heavily industrialized corner of the suburb.


Standing outside the building Friday afternoon, Burge described how police found “garbage everywhere” and an infestation of bedbugs when they arrived the previous night. “The building was just filthy,” he said.


Residents were evacuated to six area hospitals, and the initial priority is finding housing for them once they leave the hospital. A spokesperson for Ingalls Memorial Hospital said it took in five people from The Mothers House, all of whom were in good condition.

Burge said Friday afternoon that since police arrived late Thursday, no staff members or administrators from the facility have shown up.


“You’ve got to wonder who would run a facility like this,” he told reporters outside the building.


Continued


FOLLOW-UP: One Mother Tried Sounding The Alarm on Deplorable Conditions at Dixmoor Mental Health Facility

ct-ctlfl-ct-sta-dixmoor-police-news-conference-st-0228-5-20180227

The mother of one of the residents evacuated last week from what police described as a bedbug-ridden mental health facility in Dixmoor said Tuesday she tried to raise the alarm with village officials months ago about issues at the center.

Dixmoor police on the evening of Feb. 22 removed 35 men and women from the facility, known as The Mothers House, who were living in what the village’s police chief called “deplorable” conditions.

The center, 14127 S. Leavitt Ave., is operated by the nonprofit Value Care Centers, but police had doors to the building boarded over to prevent occupancy.


Angie Britch said her son, Bailey, became a resident at Mothers House last Dec. 7 and, although she lives more than two hours from the center, visited regularly. In one visit, she said, she used a washroom that she later found out was intended for the residents’ use and found it lacked hot water, toilet paper and paper towels, and that her son, who has autism, had complained to her he couldn’t shower due to a lack of hot water.


Britch said she tried calling Police Chief Ron Burge on Dec. 10 to ask that officers conduct a welfare check, but that he hung up on her. Britch said she also emailed other village officials regarding Mothers House but never received a response. Following a news conference Burge held at the Dixmoor police station Tuesday, Britch went into a hallway to speak with the chief.


Burge later denied hanging up on Britch, insisting he never had a phone conversation with her. “If she contacted me with an issue, I would have addressed it,” the chief said.


Britch said her son, who is 22, told her about bedbugs in the facility. She said Bailey did not know what the bugs were, but was told by another resident.


Read the Follow-Up Story Here

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

6. North Carolina - Behavioral Health Plan Still Needs Refining  

By Rose Hoban, North Carolina Health News, February 28, 2018

Sometime in the coming two years, North Carolina’s Medicaid program will go from being the fee-for-service plan that it’s been for more than 50 years to being run by large managed care companies. And when that happens, the current mental health system is likely to see big changes. That’s part of the reason the legislature ordered the state Department of Health and Human Services in 2016 to prepare a strategic plan for how the state’s mental health system will evolve and improve services.

GeneralAssemblyBldg1-800x500

This week, state health officials presented their draft plan to lawmakers. “This is kind of a first step,” said Assistant Secretary for Health Policy Walker Wilson, who admitted the strategic plan is nowhere near done. “You have to pick a point in time and go with where the system is and the feedback you received is.”

Unmet needs

State health officials estimate about 227,000 people in the state have a substance use problem. Another half million adults and a quarter of a million children have a serious mental health need.


Many of those people are on Medicaid, which helps cover many people with a low income. But many people with behavioral health needs lack insurance altogether and they receive services through state-only dollars that are directed to North Carolina’s seven local managed care organizations (known as LME-MCOs).


DHHS assistant secretary Mark Benton acknowledged that the LME-MCO system doesn’t fill all the needs that are there. He estimated that about 475,000 people received mental health, substance abuse or intellectual/ developmental disorder (I/DD) services last year from the state.


But another 600,000 needed those services and didn’t get them.


“Our takeaways are that there are significant unmet needs across the state,” Benton said, “and it’s perhaps more pronounced among the uninsured and in our rural areas in our state. We know that unmet need varied significantly by county, also by payor and certainly by disability type. We also know that there is an uneven or inconsistent access for services.”


Continued

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

7.
Maine - Republican, Democrat House Leaders: Finish Raising Rates for Care of Maine's Most Vulnerable Adults 

By Erin Herbig & Ellie Espling, Portland Press-Herald, March 1, 2018

While political fights may get all the news headlines, in the Legislature there are often issues that unite us regardless of party affiliation because they’re just so important. The worsening crisis in Maine home and community-based services and intellectual and developmental disabilities services and autism is one of those issues.

It’s why we, a Democrat from Belfast and a Republican from New Gloucester, have come together in support of legislation to finish the work we’ve done to address the root causes.

Our bills – L.D. 967 and L.D. 643 – would finish our successful efforts from last session to fix stagnant reimbursement rates that are crippling providers of services for Maine seniors and those living with intellectual or developmental disabilities and autism.

Home- and community-based services help Mainers age safely and independently in place. Prior to our work last session, reimbursement rates for personal care services under sections 19 and 96 of MaineCare and under Section 63 of the state-funded home care program had not been increased since 2005.


People with intellectual and developmental disabilities and autism rely on direct support professionals to provide the services they need every day to live safely in their communities. This includes helping people do everything from shopping and cooking a meal to using the bathroom and properly maintaining feeding tubes.


Before L.D. 967 was partially funded last year, intellectual and developmental disabilities and autism services, provided in sections 21 and 29 of MaineCare, had been slashed by more than 30 percent since 2007.


These low reimbursement rates led to staffing shortages across the state as workers left for less stressful and more lucrative entry-level retail positions. That in turn meant social service agencies were unable to fill job openings, leaving them unable to deliver services to people who need them.


Continued


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

8. Minnesota - Plan to Mainstream Disabled Workers Causes Worry     


By Karen Tolkkinen, Echo Press, February 23, 2018


Minnesota is working on plans to propel more adults with special needs into the mainstream workforce, and some local advocates say they are apprehensive about how that might play out.


Last year, state lawmakers approved changes intended to help disabled adults who want to work in jobs other than state-supported day programs or sheltered workshops. About half of those with disabilities say they want to have a job, said the Minnesota Department of Human Services.


"This is a really positive moment in terms of services for people with disabilities," said assistant commissioner Claire Wilson. "Transforming employment services means more options for more people."


However, parents such as Karen Schwieso of Alexandria, whose son Derek, 27, has moderate mental retardation, say they fear that the roll-out of the changes could spell the loss of places like the Alexandria Opportunities Center, which employs disabled adults.


Derek works at center, doing things such as packaging bags of chips. He does well there, she said, and he would not thrive in a competitive work environment. "He doesn't read or write but he loves to go there and visit with his friends and still gets a paycheck," she said. "As parents we know he's in a safe environment and he's getting his needs met."


Derek is about one of 10,500 Minnesotans enrolled in the state's workforce program for disabled adults. Wilson says that the changes will not force workers to move into a mainstream job, simply give them the option of exploring other possibilities. If they chose to work elsewhere, they could get training and then on-the-job support as necessary. The changes would also be available to all workers with disabilities, not just those in a day program or sheltered workshop.


Continued


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

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


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.
 
=============================

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.



=============================
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.


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


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


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

volunteer_hands

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.

                                facebook-icon                twitter_logo
 qrcode

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

grey_box_bottom.gif

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

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

     DONATE TO VOR                MAKE A DIFFERENCE




You may opt out of VOR's emails, but if you click Unsubscribe you will be removed from all of our mailings. If you would like to receive fewer emails, write us at info@vor.net.Unsubscribe" Unsubscribe

Click here to forward this email to a friend

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

Read the VerticalResponse marketing policy.

Non-Profits Email Free with VerticalResponse!