April 13, 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 mmmmmmmmmmmm Noon
VOR Board of Directors Meeting & Report to Membership mmmmmmmmmmmmm 12:30 pm
          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 mmmmmmmammmmm 3:30 pm
Reports from the States mmmmmmmmmmmmmmmmmmmmammmmmmmmmm 4:00 pm
          Participants report on news from their states. Session is moderated by VOR Board Members
Sunday, June 10, 2018
Registration: Network with families from across the country mmmmmmmmmmmm 11:30 am
VOR Legislative Initiative 2018 mmmmmmmmmmmmmmmmmmmmmmmmmmm Noon
      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 mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 3:00 pm
           Panel Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 5:00 pm

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:

VOR Members:
____       $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 (Reg. $45)
____       $125 per person if paid by April 30, 2018
____       $150 per person if paid after May 1, 2018

Hyatt Regency Capitol Hill      400 New Jersey Ave, NW    Washington, D.C.    20001
We have a bloc of rooms available for conference attendees.
The VOR Group rate is $279 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.
To make your reservations online, go to: https://aws.passkey.com/go/AnnualVORConference2018
If you do not have internet access, c all 1-888-421-1442 and mention “VOR’s Annual Conference” when making your reservation.

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

New Jersey - N.J. to Pay $1.4M to Family of Disabled Woman Who Died During 'Chaotic' Staff Cuts

By Susan K. Livio, NJ Advance Media, April 9, 2018
New Jersey has agreed to pay $1.4 million settlement to the family of a disabled woman who died while under the state's care, in a case that raised concerns about the Christie administration's rush to close public institutions five years ago.

Maureen Doran, a 68-year-old resident of the Woodbridge Developmental Center, had received attentive care for 17 years, according to her sisters and co-guardians. But conditions deteriorated inside the facility after the state decided in July 2012 to close Woodbridge and a similar facility in Totowa within two years.
A flurry of resident transfers and staff reassignments created a chaotic environment that allowed safety and supervision to decline, according to the family and the wrongful death lawsuit they filed in state Superior Court.
The settlement was reached April 2, the day the case was scheduled to go to trial in Middlesex County, said the family's attorney, Bruce Nagel of Roseland.

"This really tragic situation directly reflects Gov. Christie's decision to reduce the budget for the essential care of our special needs citizens," Nagel told NJ Advance Media Monday. "Unfortunately, Maureen was repeatedly assaulted by other residents of Woodbridge and there was not enough staff to protect her."

Arizona - Wage Hike Cuts into Services for Tucsonans with Intellectual, Developmental Challenges
By Patty Machelor, Arizona Daily Star, April 9, 2018
Housing and services for people with developmental and intellectual disabilities have become harder to find and less affordable throughout Arizona, an “unintended consequence” of recent minimum-wage increases.

It’s left Tucson families worrying about finding help as in-home assistance and daytime programs become scarce, and group homes close or merge.
The Arizona minimum wage began increasing in 2017 from $8.05 to the current $10.50 per hour.

Since then, it’s become increasingly difficult for service agencies to attract and retain employees, said Mark G. Monson, chief executive officer of Tucson-based Community Provider of Enrichment Services.

Employees who leave are finding easier work elsewhere for the same pay.

“I think our workers deserve this money, don’t get me wrong,” Monson said of Proposition 206, or the Fair Wages and Healthy Families Act, approved by voters in November 2016, adding that the fallout was “an unintended consequence.” The problem, he said, is that publicly funded organizations like his can’t keep up now.

As it is, there’s little incentive for employees to stay in jobs that can be quite challenging and often include helping people with complex needs.

Providers currently have enough money to pay, on average, 2.7 percent above minimum wage, she said. Before Prop. 206, they were averaging about 16.5 percent above minimum wage.
As of the end of January, nine or more group homes had closed statewide since early 2017, including three in Tucson, and at least seven employment programs were also eliminated.

That means people with intellectual or developmental disabilities who were previously working are now staying home, and that families who need help during the day are competing for space in thinly resourced programs.

The problem is leading to some of the highest employee turnover rates providers have seen.
From 2008-2010, for example, Community Provider of Enrichment Services (CPES) had a turnover rate of about 32 percent, but since the wage increase, it’s jumped to about 51 percent.
A similar but smaller organization, the Tucson Residence Foundation, also saw a turnover rate of about 32 percent during those recession years and is now seeing rates around 48 percent.

“My big concern is what happens the next year, when the minimum wage goes up again,” said CPES’s Monson. “If we don’t have the right workforce, who is going to care for these individuals?”

Under the voter-passed measure, the minimum wage is scheduled to go up to $11 per hour next year and to $12 in 2020.

California - Assembly Member Holden's Bill to Address Minimum Wage for Developmental Disabilities Service Providers Passes First Committee
Pasadena Now, April 10, 2018
Assemblymember Chris Holden’s legislation to address the minimum wage discrepancy for developmental disabilities service providers, Assembly Bill 2623, passed unanimously with bipartisan support in the Assembly Committee for Human Services today. This bill requires the State to adjust reimbursement rates for developmental disability service providers in order to comply with legally binding local mandated minimum wage increases.

“Time is running out,” said Assemblymember Chris Holden. “Without an increase to reimbursement rates to meet local mandates, many developmental disability service providers may have to shut their doors, leading to a shortage of
services available to people with disabilities throughout our state.”

The statewide minimum wage statutes enacted in 2016 did not recognize that a number of municipalities and counties have enacted minimum wage ordinances mandating all employers within their jurisdictions to increase wages to levels above State law. Assembly Bill 2623 extends authority to the California Department of Development Services and regional centers to adjust the rates of providers to comply with locally mandated minimum wage laws enacted in the jurisdiction in which they employ workers to meet service needs under the Lanterman Developmental Disabilities Act.

Louisiana - Long-term Health Care Programs for Poor at Risk in Budget Cuts
By Kaylee Poche and Ryan Noonan, USA Today Network, April 11,2018
It was standing room only Tuesday as the House Appropriations Committee discussed the impact of a potential $2.3 billion cut to the state’s health care budget. The proposed cuts would drastically affect the elderly and the disabled, many of whom rely on government programs to receive proper care.

Some residents there to testify against the cuts donned yellow T-shirts that read “Inclusion NOW.” Others distributed large buttons reading, “Do not eliminate the LTC special income level program for Pinecrest,” referring to a state long-term care program for low-income people with developmental disabilities.

Without sufficient funding, some of the hospitals would close, while others would face significant staff cuts.

If safety-net hospitals closed, private hospitals would also be affected, forcing the remaining hospitals to experience an increase in patients — an increase for which they might not be adequately prepared.

In the case of New Orleans’ University Medical Center, a $1.1 billion facility that opened in 2015, patients would have to attend the other private facilities nearby, said Rebekah Gee, the Health secretary.

“All of a sudden, the emergency room is going to be a hell of a lot busier,” Gee said.

Rep. Gary Carter, D-New Orleans, added: “This would be devastating not just for the city of New Orleans, but the entire region.”

Gee described the cuts to the long-term care program, which could total nearly $1 billion in state and federal funds, as the second most damaging to low-income residents, next to the cuts to the public-private partnership hospitals.

According to Gee, 46,000 residents receiving funding for nursing homes and disability centers
under the long-term care plan would lose that coverage.

“Out of all the reductions, this is the one that causes me the most heartburn,” Jeff Reynolds, Health Department undersecretary, said. “This is a case where the state is backing away from its commitment to the elderly and disabled.”

Some of those 46,000 are residents of intensive care facilities for people with intellectual disabilities, such as Pinecrest Supports and Services Center, the only state-run intensive care facility in Louisiana.

One committee member, Rep. Tony Bacala, R-Prairieville, expressed his concern over the high costs of both Pinecrest and the private facilities in the state, which he said were significantly higher than those in other states.

“We don’t always have to talk about kicking people out of programs,” Bacala said. “Sometimes we just need to be talking about getting in line with the rest of the country for these outliers. It’s the kind of thing that I think we should be concerned about as well.”

But Michelle Alletto, the Health Department deputy secretary, said that the cost was high because of the state’s commitment to making Pinecrest a place residents’ families can trust.

“A majority of people in Pinecrest, that is their home, and we have to treat them with dignity, and we have to serve them in a way that gives them access to joy, food and activities of daily living that we all treasure,” said Alletto. “And so yes, the cost of Pinecrest is high.”

Arkansas - Kids with Special Needs and Disabilities Could Lose Services because of Program Merger
By Amanda Jaeger, THV11, April 9, 2018
A new program by the Arkansas Department of Human Services could mean major changes for thousands of kids with special needs and disabilities.

Currently, DHS has been operating two Medicaid-funded developmental daycares. Now, they have agreed to a merger to combine the two programs into one new program, Early Intervention Day Treatment (EIDT). It becomes effective July 1.

One result of this program change is that within the first year 3,300 kids could be taken out of their program if they don't have a diagnosed therapy need. Director of the DHS Division of Developmental Services Melissa Stone said the merger and changes are necessary for sustainability as Arkansas is one of only two states still operating Medicaid funded developmental daycares. She also said it is unlikely all 3,300 affected kids will not be eligible for EIDT.

“We know many of the kids have not been evaluated to see if they need therapy because therapy was not a requirement for one of the original programs,” Stone said. “We don't know that those kids won't qualify under the new program.”

Stone said that in the new EIDT program, it will be a mandatory eligibility requirement for kids to get tested for a therapy need. Each clinic will have to have physical therapists, occupational therapists, and speech therapists on hand and they will be evaluating children to find what services they need. Stone said that kids who are not eligible under the new program will have other options.
“We believe if these kids don't have true medical needs that need the inclusive Medicaid funded day program they will do better in regular daycare settings,” Stone said.

But, is there room for up to 3,300 kids to move to other federally funded programs and classrooms next year? Tonya Williams, director of the division of childcare and early childhood education, said there is room in programs like ABC, Head Start, Early Head Start, public school pre-k or regular daycare programs.
One of the 3,300 kids that could lose services is Jaden Reynolds, who has been participating in First Step, a program he will no longer qualify for under the new merger. That's because he does not have a diagnosed therapy need. He only qualifies for help with developmental delays.

Reynold’s grandmother, Alanna Opal, said she feels Jayden won’t get the help he truly needs if he is let go of the program before he is ready. Opal said First Step has changed Jayden’s life for the better.

“Prior to First Step, he was like a shell and was just shut down,” she said. “Now, he has improved greatly in his emotional wellbeing and physical wellbeing.”

She said he’s learned to dance, sing, talk, recognize colors, and recite his ABCs. She said he is more outgoing than ever before and is learning leaps and bounds better than before. Opal said she has no idea where Reynold’s will go now because other programs are too far away from their rural home.

“Head Start closed near us, so I would have to transport him I don't know how far,” she said.
Overall, she is most worried the switch will damage the progress he's made and doesn't believe other services will provide him the care and attention he needs.

“It was our DHS caseworker who initially suggested First Step,” she said. “They said he definitely needed to be in First Step.”

Brett Chancellor is CEO of First Step and is now part of the “Save my Services” campaign. With this campaign Chancellor, Opal and thousands of other families are fighting to remove the therapy requirement.

California - Lack of State Funding Threatens Santa Rosa Home for People with Developmental Disabilities
By Martin Espinoza, The Press Democrat/Argus Courier, April 12, 2018
Chrissy Wilka’s house on Baird Road in Santa Rosa’s Rincon Valley neighborhood is classified as an ICF/DD-CNC — an intermediate care facility with 24-hour continuous skilled nursing care for those with developmental disabilities.

For Wilka, 29, who’s had severe cerebral palsy all her life, the Baird House is just home. Her bedroom walls are decorated with photos of her family, and images of her favorite movie stars and musicians, which she prints out at the Rincon Valley Regional Library.

The Montgomery High School graduate often visits friends in the neighborhood, spends weekend afternoons at Rincon Valley Community Park and sometimes gets lunch with her parents at Oliver’s Market on Montecito Boulevard.

But the 24-hour care she receives is going away; Baird House is scheduled to close this year. The reason is the state reimburses the 25-year-old facility at half the monthly rate per resident it does similar homes created by the state Legislature in 2005.

The monthly, per-resident reimbursement Baird House gets from Medi-Cal through the state Department of Health Care Services ranges from $11,564 to $13,588 a month per individual, according to North Bay Regional Center, the state’s contractor that provides case management and family support services to Sonoma Development Center residents.

By comparison, the continuous care facilities developed by state law receive a median reimbursement of $22,636 a month per resident. These homes are called Adult Residential
Facilities for Persons with Special Health Care Needs and are licensed by Community Care Licensing, a division of the state Department of Social Services.

Those familiar with both models of care say Baird House actually provides a higher level of care than the newer adult residential facilities. Baird House’s Medi-Cal rates were set back in 2000 and have increased little since, said Russell Schreiber, a Sonoma County psychologist who founded Baird House in 1993 with his wife, also a psychologist.


Three years ago, Gov. Jerry Brown unveiled a plan to close the Sonoma Developmental Center by 2018 and spend nearly $50 million to transition residents into community-based homes and programs. Under the plan, two other centers, Fairview Developmental Center in Southern California and Porterville Developmental Center in the Central Valley, also are scheduled to be closed by 2021 under Brown’s plan.

But the closure of SDC is also driven by state laws that ensure those with developmental disabilities are provided with services and support that allow them to live more independently.

The Wilkas and Schreiber say the state is giving priority to residents coming out of developmental centers, at the expense of those with developmental disabilities who are already in the community.

Massachusetts - DPPC Seeks to Keep All Investigative Records in Death Case Secret

By Dave Kassel, COFAR Blog, April 12, 2018
It would be nice if the Disabled Persons Protection Commission was on the side of the disabled and their families, but it often seems that the agency is more interested in protecting its turf.

We’ve been involved in a battle since February for the DPPC’s investigative records regarding the death of Karen McGowen, a client of the Department of Developmental Services. Ms. McGowen was killed in an apparent accident last November. She reportedly fell from a wheelchair lift while getting out of a van at her DDS-funded day program in Pittsfield.

The DPPC, which is charged with investigating or supervising investigations of abuse and neglect of disabled adults under the age of 60, has confirmed that it is investigating Karen McGowen’s death.
Little if any information has been publicly released about the incident. As a nonprofit advocacy organization for persons with developmental disabilities and their families, we have been trying to determine the circumstances under which her death occurred.

On February 13, the DPPC denied my request for the records in the case, stating that the investigation was incomplete. But in his letter denying the records, Andrew Levrault, the DPPC’s assistant general counsel, added that even when the investigation is completed, any records the Commission has on the case would be exempt from public disclosure and that I would need permission from Karen’s legal representative to obtain them.

Connecticut - VARCA to Close, Property to Revert to City of Derby
By Eugene Driscoll, Valley Independent Sentinel, April 8, 2018

Derby and Ansonia officials are talking about repurposing the VARCA building at the corner of Coon Hollow Road and Chatfield Street for municipal use.

The building could include space for a regional senior citizen center for Ansonia and Derby. The facility is almost 30,000 square feet, so there are a ton of municipal opportunities for the property, according to the Derby Mayor’s Office.

The property transfer is happening because VARCA (Valley Association for Retarded Children and Adults, Inc) is closing later this month. The building is on city property, part of a more than 40-year-old deal between the nonprofit and the city. The agreement included a provision saying that if VARCA closes, the land goes back to Derby.

The nonprofit organization had 81 employees and 20 volunteers in 2016, according to 2017 federal tax filings.

VARCA Inc., and its subsidiary, George Hegyi Industries, is a sheltered workplace and training facility for people with special needs — a trailblazing concept pioneered locally in the late 50s by local parents of kids with special needs. But VARCA relies heavily on government grants — it received about $700,000 in grants in 2016, according to the nonprofit’s tax documents — and those tax dollars are no longer flowing to programs like VARCA, according to Andrew Baklik, Derby Mayor Rich Dziekan’s chief of staff.

Instead of having people with special needs all working in one place — the client-workers did an array of packaging and assembling jobs — there has been a long push to “mainstream” people with developmental challenges into the workplace at large, with different types of support.

“The push to close sheltered workshops has been going on for years,” said Dominick Thomas, a Derby native and prominent local attorney who serves on VARCA’s nonprofit board of directors. “The motivation is good, but we’ll see what the follow through is.”

Thomas’ involvement with VARCA runs deep. The organization played an important role in his sister Rosemarie’s life. She had Down’s Syndrome, and VARCA was a dignified place to work and socialize — a place to make friends, hold pageants and picnics, a vital and vibrant community for people with special needs.

Call For Entries! 2018 Application Period Now Open for Disability Reporting Contest

Posted on March 22, 2018 by
The National Center on Disability and Journalism

The National Center on Disability and Journalism is accepting entries for the 2018 Ruderman Foundation Awards for Excellence in Reporting on Disability.

This award is the only journalism contest devoted exclusively to disability coverage.

The Ruderman Foundation Awards for Excellence in Reporting on Disability recognize the best reporting on disability issues and people with disabilities that is being done in the U.S. and abroad.

More than $20,000 in cash awards will be given to first-, second- and third-place winners in large media and small media categories.

There is no entry fee for the competition, which is open to digital, broadcast and print media outlets.
Contest entries are due by midnight on Aug. 6, 2018. Entries must have been published or aired between July 1, 2017, and July 31, 2018. Entries are accepted from outside the U.S., although the work submitted must be in English. Awards are given to individuals or teams.

The 2018 winners will be recognized at a fall 2018 ceremony in Washington, D.C., featuring a keynote speaker on disability coverage as well as a disability reporting workshop for journalists.

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:

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