May 24, 2019
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


This week, we are asking our members to call your
Representatives in Congress
Tell them you oppose the Disability Integration Act
and to
Let them know that ADAPT does not speak for you!

(Please see the lead story under National News for details about ADAPT's activities and their bullying congressional offices to cosponsor their bill, which would close ICFs, nursing facilities, and other forms of congregate care.)
If you have not already engaged
in our email campaign to
Please do so now!
The DIA has been gaining dangerous momentum in the House of Representatives.
VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~

Conference Speakers - June 9th Legislative Initiative:

Melissa Stone - Director, Division of Developmental Disabilities Services, Arkansas Department of Human Services

Amy Lutz - National Council on Severe Autism, EASI Foundation

James Edmondson, M.D. PhD. On Medicaid Managed Care


or bring your pre-printed reports to the conference

Can't Attend the Conference This Year?

You can help by donating to VOR
or by becoming a Legislative Initiative Sponsor
National News:
80 Arrested In Nation’s Capital At Disability Rights Protest
By Michelle Diament, Disability Scoop, May 21, 2019

Dozens of disability rights activists — including some in wheelchairs — were arrested near Capitol Hill while pressing for more access to community-based services.

U.S. Capitol Police arrested 80 people who were demonstrating Monday morning outside the headquarters of the U.S. Department of Health and Human Services.

The protesters were with the disability rights group ADAPT. They were seeking a meeting with Secretary of Health and Human Services Alex Azar to ask that he support adequate funding for Medicaid, discontinue efforts to block grant the program and back a series of other changes to make services for people with disabilities more available in the community.
All of those arrested were charged with crowding, obstructing or incommoding, according to Eva Malecki with the U.S. Capitol Police. They were all released and can either pay a fine or request a court date for the misdemeanor charge, Malecki said.

Separately on Monday, ADAPT activists also occupied the offices of 19 members of the House of Representatives. The group sought to drum up support for the Disability Integration Act,.

As a result of the action, some lawmakers did indicate that they would sign on as co-sponsors of the legislation, ADAPT said.

NOTE: VOR opposes the Disability Integration Act, because it discriminates against the most severely intellectually and developmentally disabled, opposes family choice, and will, if enacted, eliminate ICFs, nursing facilities, and other forms of congregate care.
Opinion: Autistic people with intellectual disability often excluded in studies
By Ginny Russell, Spectrum, 21 May 2019
About half of all people with autism also have intellectual disability. But a great deal of autism research is drawn almost exclusively from participants without intellectual disability, as my colleagues and I reported earlier this year 1.

And yet, the researchers tend to generalize the findings across the whole spectrum.

This sort of selection bias has a lasting effect on our understanding of autism. It could also undermine the search for effective therapies for people with the condition.

Earlier this year, for example, researchers reported a link between the severity of social deficits in autism and the volume of brain areas governing memory and emotion. They found the same association in children with attention deficit
hyperactivity disorder. They concluded that the two conditions may have a common biological basis.

However, 82 percent of the study’s participants have an intelligence quotient above 70, the cutoff for intellectual disability. The findings are more convincing as evidence for a link between attention deficit hyperactivity disorder and autism in the absence of intellectual disability.

We need strategies to eliminate the bias against intellectual disability, and to make sure this much-marginalized group of autistic people is included in research.

State News:
Washington - State To Pay $8M After Pleas To Help Man With Special Needs Went Unanswered
By Asia Fields, The Seattle Times, May 20, 2019
Vernon Gray was living with rats when a social worker showed up to his Central District home, where a layer of garbage coated the floor and a squalid odor caused people to gag when they stepped onto the property.That was in 2009, when the state’s Adult Protective Services received its first report about him. Gray, who has a developmental disability, had been living in the house alone since his mother died in 2000.

Neighbors begged the state to intervene, explaining he was unable to take care of himself. They continued after Gray became homeless in 2013.

Adult Protective Services (APS) investigated Gray’s situation three times since 2009, but each time, he was left on his own.

The agency, which is within the Department of Social and Health Services (DSHS), investigates reports of vulnerable adults who have been abused, abandoned or neglected.
Attorney David Moody argued in a tort claim that the state failed to protect Gray, now 64.

On Thursday, the department agreed to an $8 million settlement, which Moody said is the largest paid by the state in an adult protective services case. The state agreed to settle the case before a lawsuit on Gray’s behalf was filed.

DSHS spokesman Chris Wright said confidentiality laws prevent the department from discussing details of cases. But in a statement, he said the agency is “sorry for what happened to Mr. Gray,” calling the case a “system-wide failure.”

New Jersey - Bellwether's License to Operate Group Homes in NJ Revoked
By David M. Zimmer, Gene Myers and Lindy Washburn, North Jersey Record, May 22, 2019
New Jersey will shut down the state’s largest for profit provider of residential and day programs for individuals with developmental disabilities for operational violations and failure to make needed improvements. 

Following an investigation by an independent monitor, a moratorium on admissions and a period of enhanced oversight triggered by reports of alleged operational violations at facilities statewide, Bellwether Behavioral Health will lose its licenses to operate in New Jersey, according to the state’s Division of Developmental Disabilities. 

Bellwether did act to address state officials’ concerns, and “has not been able to demonstrate the systemic improvement needed to continue operations in our state,” said Jonathan Seifried, the division's assistant commissioner.

The state report on the independent monitor’s findings released Wednesday found 12 of Bellwether’s 14 group homes operating on provisional licenses in New Jersey were deficient in cleanliness. Half smelled of urine, five had rotten or expired food in the refrigerator and one was found to have mixed up residents’ medications, according to the report.
The monitor, former CEO of the national Council on Quality and Leadership Cathy Ficker Terrill, found Bellwether staff was not implementing person-centered behavioral intervention plans, some of its 460 residents had sustained unreported client to client abuse and medical follow up was not always provided.

Some homes had as many as 60 deficiencies, the report states.

“Until Bellwether has a system in place to maintain sustainable improvements, the organization and the individuals they serve may experience a greater level of risk,” reads the report.

Bellwether did not respond to a request to comment.

North Carolina - Closure of Behavioral Health Facility in Pee Dee Leaves Some Parents Scrambling
By Nia Watson, WMBF News, May 23, 2019
The closing of Palmetto Pee Dee Behavioral Health in Florence has some parents on edge.Daniel Eichelberger, the center’s CEO, announced Wednesday the facility will shut its doors June 30. In a statement, he said multiple factors led to the decision, including the cost to renovate the aging facility.

While the center has a history of violations and fines, Amber Woods is disappointed to see it close. Woods said she got an e-mail Wednesday that the facility was shutting down and her son Barry would be discharged June 7.

"This is an emergency,” she said. “I mean we've got two weeks and no place to go."
Woods’ son started treatment at Palmetto Pee Dee Behavioral Health in 2013. Barry has severe autism and aggression issues that requires around the clock care.

“He’s what they consider a runner. He likes to run away,” she said.

In March, the Department of Health and Environmental Control cited staff misconduct violations, as well as patient abuse allegations against the facility.

"He'd have scratches on him and bruises on him and so I was concerned and we had been looking for a new facility,” Woods said.
However, Woods said recently the center improved so the announcement came as a shock to her.

"They had been making positive changes as far as the facility itself as well, you know, they made employee changes and I thought it was going in the right direction," she said.

The change is not only hard for Woods, but she said it’s probably more stressful for her son and other patients who require long-term care and are used to being on a schedule.

“There are several other children, young adults, that are going to be affected by this with no place to go and going home is not an option for because of safety reasons for themselves... for the people they live with,” Woods said.

DHEC requires a facility to provide a list of where patients will be relocated prior to closing.

Texas - Special needs families: 10 Years is Too Long to Wait for State Help
By Tanya Eiserer, WFAA News, May 17, 2019
More than 155,000 families of people with intellectual disabilities have spent up to 10 years or more waiting for help from the state of Texas to pay for therapy and critically needed care, a WFAA investigation has found.

Texas spends far less than other states when it comes to assistance. It's ranked 48 out of 50 states when it comes to the amount it spends helping people with special needs, according to the State of the States in Intellectual and Developmental Disabilities Project compiled by the University of Colorado.

Many families find themselves watching their children grow into their teens and young adulthood as they wait for the state's help. 

Meet 20-year-old Braden Erp. He’s autistic. He’s also a movie buff with an encyclopedic memory for animated character quotes.
Braden cannot care for himself.

“If he was alone, and someone opened the door and said, ‘Hey, come here,’ he would probably go,” said Jennifer Erp, Braden's mother.

And then there’s Jayme. She’s 17. She has the mental capacity of a toddler, and her mother worries about her future.

Right now, both Braden and Jayme are in public school. But when they turn 22, by law, they can no longer attend classes.

Michigan Court of Appeals Upholds Guardian's Right to an Injunction to Prevent the Transfer of her Ward
By Jill Barker, DD News Blog, May 20, 2019
A recently published decision by the State of Michigan Court of Appeals upholds the right of a guardian to seek injunctive relief from the Probate Court to prevent the transfer of her ward from one facility to another, based on showing that such a transfer would be detrimental to the well-being of the person under guardianship.

In re Guardianship of Lisa Brosamer v. Lenawee County Community Mental Health Authority (CMH) Is a case involving Lisa Brosamer who is severely developmentally disabled. Patricia Brosamer became Lisa’s guardian in 2009. Lisa’s mother cared for Lisa in her home from 1961 to 2006, when, due to the mother’s declining health, Lisa was moved into a residential treatment facility. Lisa is severely intellectually disabled and is unable to care for herself.

On Sept. 26, 2018, the guardian filed a petition with the Probate Court to stop a planned transfer of Lisa from one group home to another. Patricia Brosamer contended that the Lenawee CMH proposed transfer would be detrimental to Lisa. Lenawee CMH argued that the agency met the requirements of the law by determining that the transfer from one facility to another would not be detrimental and that the legislature did not intend for a guardian to be able to veto a decision by CMH. 

Lenawee CMH based its case on this excerpt from the Michigan Mental Health Code:

330.1536 Transfer of resident; notice; appeal.

Sec. 536.
  1. A resident in a facility may be transferred to any other facility, or to a hospital operated by the department, if the transfer would not be detrimental to the resident and the responsible community mental health services program approves the transfer. [emphasis added]
  2. The resident and his or her nearest relative or guardian shall be notified at least 7 days before any transfer, except that a transfer may be effected earlier if necessitated by an emergency. In addition, the resident may designate 2 other persons to receive the notice. If the resident, his or her nearest relative, or guardian objects to the transfer, the department shall provide an opportunity to appeal the transfer.
  3. If a transfer is effected due to an emergency, the required notices shall be given as soon as possible, but not later than 24 hours after the transfer.

Massachusetts - COFAR asks State Attorney General to Take a More Active Role in Protecting the Developmentally Disabled
By Dave Kassel, The COFAR Blog, May 21, 2019

COFAR members met last week with officials in the state Attorney General’s Office to raise concerns about an apparent lack of focus by the state’s chief law enforcement agency on abuse and neglect of persons with developmental and other disabilities.

While Attorney General Maura Healey’s office has lately taken an active role in scrutinizing and penalizing operators of nursing homes that provide substandard care to elderly residents of those facilities, the same cannot be said of her office when it comes to investigating corporate providers of group homes for the developmentally disabled.

In March, Healey announced a series of settlements totaling $540,000 with seven nursing home operators for violations of standards of care and conditions in those facilities. In light of the attorney general’s actions and the substantial media coverage that resulted from them, COFAR asked Healey’s office for records of similar fines, settlements or penalties levied against Department of Developmental Services providers from Fiscal 2015 to the present.

In response, the AG provided records of just two cases in which penalties were imposed on DDS providers. In one case in 2017, a provider, the Cooperative for Human Services, Inc., was required by the AG to pay $19,000 in restitution to employees who had been denied overtime payments, and to pay a $4,000 fine to the state.

In the second case in 2018, Triangle, Inc. was required to donate $123,500 to charities for having paid less than the minimum wage to participants in a former sheltered workshop, without having a proper minimum wage waiver. The provider was also required to pay $6,500 to the AG’s Office to cover administrative costs.

So, that’s seven actions taken by the AG totaling more than half a million dollars against nursing home providers in just one month, versus two actions totaling $153,000 taken against DDS providers in the past five years.

Moreover, the larger of the two actions against the DDS providers was for paying subminimum wages to sheltered workshop participants — something that is seen as a problem only by opponents of sheltered workshops themselves.

As we’ve said many times, we see the real wage problem as the failure to pay adequate compensation to direct-care workers in the DDS system. That is an issue that the AG should be investigating, along with the excessive salaries paid in many cases to provider executives.

As for investigating abuse and neglect in the DDS system, the AG appears to have done nothing at least since Fiscal 2015. (We had originally asked for a list of penalties and other actions taken against DDS and its providers going back to Fiscal 2000. The AG responded that that request was overly broad in time and scope. As a result, we narrowed the request to DDS providers since Fiscal 2015.)

VOR Bill Watch:

H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Bot issues deserve clean, stand-alone bills.
What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
VOR's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Note: Mail in Registration is slow. We recommend registering online.

Additional donations to help defray the event’s costs are always appreciated

Sponsorship Opportunities Are Available!
If you are unable to attend, or if you or your family association would like to support our conference, you can help by becoming a sponsor
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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