May 25, 2018
VOR Weekly News Update
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
VOR 2018 Annual Conference and Washington Initiative
June 9 - 13, 2018
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C.
Saturday, June 9, 2018
Registration: Network with families from across the country
VOR Board of Directors Meeting & Report to Membership
          Annual meeting of the VOR Board of Directors, open to all members
          Committee Reports and Presentations
          Time will be provided for member questions and comments
Installation of VOR 2017-2018 Officers and Board Members
Reports from the States

Sunday, June 10, 2018
Registration: Network with families from across the country
VOR Legislative Initiative 2018
      Opening Remarks - Joanne St. Amand, President and Hugo Dwyer, Executive Director
      Panel Discussion on State Advocacy – Liz Belile (TX). Susan Jennings (PA), Rita Winkeler (IL)
      Guest Speakers – Kate McSweeny, Vice President on Govt. Affairs & General Counsel at ACCSES
     (Other speakers TBA)
Legislative Briefing
           Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events

VOR’s Sunday Dinner at The Dubliner - 7:00 pm
Sunday Dinner at The Dubliner is optional. The price is $35 per person. Alcoholic beverages are available at an extra charge.
We ask that you make a reservation in advance.

Monday, June 11 – Wednesday, June 13, 2018
The Washington Initiative
Visits to Capitol Hill - Personal meetings with Members and Congress and their staff are the most effective way to educate and influence federal lawmakers. Join VOR members and advocates from around the country to convey the importance of residential choice and family decision-making to Members of Congress. Be sure to plan enough time to cover your state’s Congressional Delegation.
Monday, June 11                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm
Tuesday, June 12                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm

To register for the conference and legislative initiative or make a dinner reservation at the Dubliner, go to:

ACT NOW! DISCOUNTS FOR EARLY REGISTRATION END
APRIL 30!

VOR Members: $110
Non-VOR Members: $150.00    (Fee includes 1 year membership)

______________________________________________________________________________
******** ATTENTION CONFERENCE ATTENDEES ********

Congressional Lists Are Available NOW!
It's time to start making appointments for with your legislators for
Hill Visits during the Legislative Initiative, June 11 -13

VOR and YOU

Memorial Day 

Memorial Day is a day of remembrance of those who gave their lives in military service, both in battle and in peace.

While we honor our departed service men and women, let us take a moment this year to honor the lives of those who have fought a different kind of battle, those who have devoted their lives to creating a better world for individuals with intellectual and developmental disabilities, and let us remember those individuals with I/DD who battled all their lives to find their own peace.

We are grateful for all who have devoted their lives to this effort, this struggle, this ongoing battle.

Thank you to our Veterans, and in their honor, we would like to thank all of our own soldiers and warriors.

We are forever in your debt.
National News
Nation's Largest Employer Misses Disability Hiring Goal
By Michelle Diament, Disability Scoop, May 22, 2018

The U.S. government is falling short on a plan to dramatically increase hiring of people with intellectual disability and other conditions, according to a new report.

Just 1 percent of the federal workforce had so-called “targeted disabilities” in 2015. That’s down from 1.05 percent in 2003 and “far below” a government goal of 2 percent.

The figures come from an annual report out this month from the U.S. Equal Employment Opportunity Commission on diversity in the federal workforce.

Targeted disabilities include intellectual disability, psychiatric disability and other conditions that have historically been associated with high rates of unemployment and underemployment.

State News
Wyoming Leaders Digging into to Boost the Future of Wyoming's Life Resource Center
By Raven Ford, KCWY-13, May 24, 2018
Wyoming Life Resource Center administrators hosted a groundbreaking ceremony in Lander on Tuesday, digging in for the future. City officials along with Governor Matt Mead took the first dig to kick off construction at the Wyoming Life Resource Center upgrades.

"This is a fantastic development for the most vulnerable citizens in Wyoming," said Governor Mead at the ceremony.

The Wyoming Life Resource Center has been an intermediate care facility since 1995 and administrators said that won’t change. “But we’re going to upgrade their facilities to meet the modern demands of running that.”
The upgrades will help with treatments and benefit clients as they learn to take care of themselves.

Wyoming Life Resource Center Administrator Jeremy Forbis commented, "Certainly the evolution of how we take care of our most were not vulnerable clients has changed in the last hundred years that we’ve been open for a very long time it was caretaking and at this point what we’re really trying to do is improve the quality of life."

Rhode Island - State Funding for People with Intellectual and Developmental Disabilities to be Restored
By Steve Ahlquist, Uprise RI, May 23, 2018
Well over a thousand people with disabilities, their family members, friends, and direct care workers crowded into the Rhode Island State House on Wednesday in what was originally going to be a rally to demand the restoration of $18 million cut in funding to Intellectual and Developmental Disabilities (I/DD) services in the Governor’s proposed budget.

But before the rally began, Rhode Island Governor Gina Raimondo, Speaker of the House Nicholas Mattiello (Democrat, District 15, Cranston) and Senate President Dominick Ruggerio (Democrat, District 4, Providence) all committed to restoring the funds in the budget, leaving the crowd with little to do but thank the elected officials for not following through on threatened cuts.

The rally was organized by the Community
Provider Network of Rhode Island (CPNRI) which represents 22 private providers of services and supports to more than 3,500 people with intellectual and developmental disabilities in Rhode Island.

“Every year we have a difficult budget and it’s hard,” said Governor Gina Raimondo, who included the $18 million in cuts in her budget. “but I’m here to tell you that we’re going to do the right thing, we’re going to put the $18 million there, we’re going to make sure that resources are there in order to protect the system and also help us to make the system more stable, and transform the system. And we’re also going to continue with you, for a long time, to make sure we raise the wages of people who do this work.”

Maryland - Gov. Hogan Announces $20.2 Million for Rate Increases for Long-Term Service and Supports Providers

WCBC Radio, May 22, 2018

Governor Larry Hogan today announced that the administration will provide a three percent increase to the Maryland Medicaid Long-Term Services and Supports (LTSS) provider rates. The increase will benefit nursing home and home and community-based providers who deliver services to individuals enrolled in Maryland Medicaid.

“This rate increase ensures continued access to care and services for many of our most vulnerable Marylanders who need specific care,” said Governor Hogan. “Our administration greatly values the hard work these care providers do each and every day, and we are fully committed to supporting them as comprehensively as possible.”

LTSS are provided in home and in community-based settings, as well as in institutions including nursing facilities and intermediate care facilities for individuals with intellectual disabilities. Home and community-based services vary by program and can include personal assistance, nursing, nurse monitoring, medical day care, case management, transportation, medical supplies and medical equipment, among other services.

Minnesota - City Among First to go 'Autism Friendly'
By John Reinan, Star Tribune via Disability Scoop, May 22, 2018
Seven-year-old Kayde Gustafson races into the YMCA gym, grabs a kid-size basketball and puts up a shot at one of the four hoops ringing the court.Then he goes to the next hoop. And the next. Always in the same order, always the first thing he does at the gym.

“It’s his acclimation routine,” said his dad, Derik.

Kayde has autism. He has trouble connecting with other children at school. But for one Friday night a month, he’s just another kid letting off steam in the gym with friends.

This special “respite night” through Autism Friendly Austin is meant to give parents a break from caring for their children on the spectrum. But from the looks of it, the kids are getting even more out of it than the adults.

“It’s great,” said John Halvorson, dropping off 8-year-old Kirby. “It’s nice to get out. It’s also good
for him to get out and mingle with other kids.”

Austin, the southern Minnesota city of 25,000 best known as the home of Spam, has become one of the first cities nationwide to launch a concerted community-wide effort to make itself more welcoming to citizens with autism. The Autism Friendly Austin project has enlisted schools, businesses and residents in working to accommodate people with autism.

“This is one of only a handful of towns in the nation that I have heard of doing this,” said Ellie Wilson, executive director of the Autism Society of Minnesota. “I think the citywide effort is really special.”

Delaware - Thank you Lopez, Pettyjohn for Support of McNesby Act

Letter to the Editor, of the Cape Gazette, By Cynthia and Tim Campbell, May 25, 2018

I want to thank our state senators from Sussex County, Sen. Ernie Lopez and Sen. Brian Pettyjohn, for their co-sponsorship of The Michael McNesby Full Funding for Adults with I/DD Act (HS 1 for HB 104). This bill has been sponsored by Rep. Melanie George Smith along with co-sponsor Sen. Bryan Townsend. It is truly a bipartisan bill to support vulnerable adults in Delaware.

The last time the system of care for adults with intellectual and developmental disabilities was fully funded was in 2004. It is important that we fund the nonprofit agencies that employ the direct support professionals who provide support to our loved ones in both day programs and residential settings. Most adults with I/DD like autism are living with aging parents, but will need to move to other residential settings when their parents become unable to care for them due to age, illness and death.
The direct support professionals are paid on average $11.50 per hour, a wage rate that is insufficient to retain dedicated professionals since they can make more working in retail with much less responsibility.

Massachusetts - State Public Records Supervisor Reverses Self, Upholds Secrecy of DPPC Reports
By Dave Kassel, The COFAR Blog, May 22, 2018

In a reversal of her earlier decision, the state’s Public Records Supervisor has issued a final determination that the state Disabled Persons Protection Commission can keep investigative reports about the abuse or neglect of any “identified individual” secret.

We were surprised and disappointed by the final decision by Public Records Supervisor Rebecca Murray, which was issued on April 20. It may become nearly impossible for the public to learn the outcomes of many, if not most, investigations of abuse and neglect of developmentally disabled persons as a result.

On May 16, Murray declined my request that she reconsider and restore her original March 22 order to the DPPC. That original determination had appeared to recognize at least some DPPC reports as public records.

In her final decision on April 20, Murray focused on one exemption to the Public Records Law [known as “Exemption (a)”], which appears to us to give blanket authority for the enactment of statutes and regulations that can potentially exempt all records of particular state agencies from disclosure.

Murray’s interpretation of Exemption (a), in our view, could establish a precedent under which blanket secrecy laws and regulations could be enacted on behalf of agencies throughout the state government. That would be the case even though the Public Records Law supposedly establishes a presumption that all governmental records are public and that exceptions to that rule must be considered on a case-by-case basis.

Center Based Employment
Tennessee - Dawn of Hope Sheltered Workshop Closing in Compliance with New Medicaid Rules
Sue Guinn Legg, Johnson City Press, May 23, 2018
Dawn of Hope will close its sheltered employment workshop for people with developmental and intellectual disabilities on June 30.

The decades-old Dawn of Hope workshop, in the Johnson City Industrial Park, has been in transition for the past several years in preparation for a sweeping change in Medicaid rules that will require integrated community settings for services for people with developmental disabilities beginning in March.

How the new rules will impact the Dawn of Hope Development Center, which provides daily enrichment programming for several hundred area adults with intellectual and developmental disabilities, is not yet clear.
At its height, the workshop employed approximately 120 people but reduced that number dramatically over the past two decades as the focus of the vocational program shifted to community-based employment.

New enrollment in the sheltered employment center was closed approximately five years ago in anticipation that the day would come that the workshop would close. Approximately 30 people were employed when the new Medicaid rules were first announced in 2014.

Canada - Renfrew Parents Demand Return of Minimum Wage Exemption for People with Disabilities
Matthew Kupfer, CBC News, May 22, 2018
A group of parents in Renfrew, Ont., want provincial politicians to save their children's jobs by restoring an exemption in Ontario labour law that had allowed them to work for less than minimum wage.
The exemption enabled people with intellectual disabilities to be employed in sheltered workshops to do irregular work with community agencies for a few dollars an hour.
The Liberals' Fairer Workplaces, Better Jobs Act eliminated the exemption, and also increased Ontario's minimum wage.

Travis Tachynsky sorts recycling at Community Living Renfrew, but he will lose his job May 31 because the organization can't afford to pay him $14 an hour.

He's "sad and disappointed" and would like to keep working at the local support group or find a job elsewhere in the community, he said.

His mother, Charlene Riopelle Badour, said that despite support from Renfrew businesses, none have been able to employ Tachynsky. "It just doesn't happen. I've asked a lot of the people here who have businesses if they would employ these kids. They just don't have the time or the money to help them," she said.

Riopelle Badour said the group doesn't want anybody who can do the work to lose the protection of the minimum wage, but their children won't be able to get work otherwise.

"My son is 37. He can't read or write. He's not worth $14 an hour, but he is worth something," she said.

Illinois - How Minimum Wage Dogmatism Hurts the Disabled
By Sohrab Ahmari, Commentary, May 18, 2018

Andy has little time to chitchat. There are hundreds of hot towels to sort and fold, and when that’s done, there are yet more to wash and dry. The 41-year-old is one of half a dozen laundry-room workers at Misericordia, a community for people with disabilities in the Windy City. He and his colleagues, all of whom are intellectually disabled and reside on the Misericordia “campus,” know that their work has purpose, and they delight in each task and every busy hour.

In addition to his job at the laundry room, Andy holds two others. “For two days I work at Sacred Heart”—a nearby Catholic school—“and at Target. Target is a store, a big super-store. At Sacred Heart, I sweep floors and tables.”

“Ah, so you’re the janitor there?” I follow up.

“No, no! I just clean. I love working there.”

Andy’s packed schedule is typical for the higher-functioning residents at Misericordia, many of whom juggle multiple jobs. Their work at Misericordia helps meet real community needs—laundry, recycling, gardening, cooking, baking, and so on—while preparing residents for the private labor market. Andy has already found competitive employment (at Target), but many others rely on Misericordia’s own programs to stay active and employed.

Yet if progressive lawmakers and minimum-wage crusaders have their way, many of these opportunities would disappear, along with the Depression-era law which makes them possible.

The law, Section 14(c) of the Fair Labor Standards Act, permits employers to pay people with disabilities a specialized wage based on their ability to perform various jobs. It thus encourages the hiring of the disabled while ensuring that they are paid a wage commensurate with their productivity. The law safeguards against abuse by, among other things, requiring employers to regularly review and adjust wages as disabled employees make productivity gains. Many of these employers are nonprofit entities that exist solely to provide meaningful work for the disabled.

Only 20 percent of Americans with disabilities participate in the labor force. The share is even smaller among those with intellectual and developmental disabilities. For this group, work isn’t mainly about money—most of the Misericordia residents are oblivious to how much they get paid—so much as it is about purpose and community. What the disabled seek from work is “the feeling of safety, the opportunity to work alongside friends, and an atmosphere of kindness and understanding,” says Scott Mendel, chairman of Together for Choice, which campaigns for freedom of choice for the disabled and their families. (Mendel’s daughter, who has cerebral palsy, lives and works at Misericordia.)

From our Friends at ACCSES:
Please sign on!
  • Congressman Glenn Grothman (R-WI-06) recently introduced the Workplace Choice and Flexibility for Individuals with Disabilities Act (H.R. 5658). This bill will restore common sense to the definition of competitive integrated employment and provide increased employment opportunities for people with disabilities. People with disabilities across the country have been denied placements in high-paying jobs because of the regulations that implement the Workforce Innovation and Opportunity Act (WIOA). ACCSES supports expanding opportunities and keeping a full array of options available. We were honored to work with Congressman Grothman and his staff to help draft this legislation. Go to the ACCSES Action Center and tell your Members of Congress to cosponsor and pass this important bill to increase employment opportunities for people with disabilities!
In Loving Memory
Virginia Lee Lambert Carraway
Born October 26, 1939 in Exeter California to Lucile and William (Bill) Lambert.  She attended school at Elderwood Elementary and Woodlake Union High School, and she attended College of the Sequoias, and Fresno State where she received her Bachelor of Nursing Degree with credits toward her Master’s Degree at Anderson Univ.
 
 She worked at Porterville State Developmental Hospital as the Training Officer for over 2200 personnel, nursing home Charge Nurse., taught nursing to State and local Colleges including DD/ID/MH Dual Diagnosed Psych Tech College level classes. When she retired she moved with her husband to Florida where she volunteered her time as Parish Nurse land Food Bank with the Methodist Church in Yulee Florida and on Board of Directors of local County Mental Health Dept.  And a Nursing Administrator, Barnabas Crisis Health Center, Amelia Island, Fl. And Court Certified Victim Witness Advocate on Domestic Violence. And Founding member of Board of Directors of Florida’s only non-profit for Families of Children with Disabilities. Co-States Coordinator Ca., and Fl. of  VOR, a National non-Profit for the DD/ID/MH Dual Diagnosis  Representative to Congress. and on NGO Communications Coordinating Committee of the United Nations (CCCUN), Women’s Gender Issues and Disability Convention, (CPRD), Olmstead Comm., Ca. Forensic Mental Health

Assoc. and past co-V.P’s  Calif  Association of State Hospitals. (CASH/PCR).
 
She is survived in death by her husband Edward A. Carraway, daughters Sonja Carraway Beebe, Kim Carraway  MacKinnon, spouse Dan MacKinnon and Christina Carraway Hickey, and sons, Richard Paul Carraway, Martin Carraway, 4 granddaughters and 4 grandsons and great granddaughter and great grandson..  She is survived by 2 brothers, William (Bill) and John Lambert and 4 Sisters, Patricia Reese, Margaret Afonso, Martha Nelson and Cynthia Hewlett and their spouses. Nine Nephews and 3 Nieces.
 
A Memorial Service will be on June 15, at 11am, at Woodlake Presbyterian Church, to celebrate her life.
 
In lieu of flower please make donations to, her passion, your local Food Bank Agency.
CALENDAR:
VOR's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
The conference 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.

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!
Our Friends at the American Health Care Association (AHCA) / National Center for Assisted Living (NCAL)
Invite you to attend the
2018 Convention
October 7-10
San Diego, CA

Tuesday, October 9 is ID/DD Day
For more information go to
www.ahcaconvention.org

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, 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 [email protected] at least 48 hours in advance of the task force meeting.
For more information, visit:

836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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