April 12, 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

Last year I attended the VOR Conference and Legislative Initiative for the first time, and it was nothing short of life-changing. The VOR members I met could not have been more welcoming and encouraging. Visiting legislative offices was invigorating, and gave me the opportunity to form bonds with legislators and their staff. In addition to the deeply meaningful connections I made with people from across the country who were just as passionate about advocating for a full continuum of care for our loved ones as I am, I returned to Texas with many invaluable advocacy tools and techniques that I have been able to use during this current legislative session, and it has made a difference. I even became a state representative for VOR, and have maintained and deepened the bonds I made in DC. I hope to bring more of my fellow advocates from Texas back with me this year, and to continue to grow our infrastructure across the country as well as our state.   
-- Liz Belile, Austin Texas
VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~

$125 per person if paid by April 30, 2019
$150 per person if paid after May 1, 2019
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C. 20001

James Edmondson, M.D. PhD. - States Transitioning to Medicaid Managed Care

Amy S. F. Lutz - National Council on Severe Autism and The EASI Foundation

More speakers TBA soon!

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
Need a roommate for the conference?
Contact us at [email protected] and we will try to help!
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 $259 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.

To make your reservations online, click here or go to:
If you do not have internet access, c all 1-800-233-1234 and mention “VOR’s Annual Conference” when making your reservation.

I attended the VOR conference 2 years ago. It was a wonderful experience. I never imagined that so many people from all over the country are having similar experiences. While at the conference we were able to hear from the different districts and it truly depends on who your leadership is for the district. I believe Arkansas (if memory serves) had the best luck with support over all the states.

We also found out that everyone seems to help out to get the end results necessary. These are a great group of people!!
- Nancy Langhauser
Murray Parents Association
National News:
HudsonAlpha Scientists Make Discovery that Helps Patients with Developmental Disabilities
By Lindsey Connell, WAFF Huntsville, April 9, 2019
Researchers at the HudsonAlpha Institute for Biotechnology have connected a variation in a particular gene with neurodevelopmental disorders.The findings will help families around the world get a better diagnosis for their impacted loved ones.

Researchers in Greg Cooper’s lab have uncovered how changes to a particular gene give rise to developmental disabilities.
They've linked developmental delay and intellectual disability (DD/ID) to variations in the BRSK2 gene with the help of a social media platform used by geneticists all over the world.

"This is an important discovery in terms of our basic understanding on how genes work and how genes can shape our health. Also for the particular families that are involved, and that includes the
families that we've worked with on this study and also there's likely to be many other families out there that will eventually be tested and be found to
have this same condition," explained Greg Cooper, PhD, faculty investigator.

“They can now get a more accurate and precise clinical diagnosis for what can, in many cases, be very significant medical challenges in terms of how a child develops and progresses,” he added.

Cooper's team recently published a paper in the American Journal of Human Genetics associating genetic variation in a gene called BRSK2 with neurodevelopmental disorders. They put together enough cases to make the link by assembling a cohort of affected individuals through a website called GeneMatcher, a social media platform for genetics.


Two disturbing articles came across my desk this week, both causing concern because they show how the "everybody belongs in a group home" ideology continues to harm Intermediate Care Facilities (ICFs) across the country.

The article form the Des Moines Register is distressing for two reasons:

First, because although the editors do portray two sides to the issue, they are clearly promoting the view that there is a problem here, and that the claims of the parents who support the facility and the people who are administering that services are not given equal emphasis. The authors did not bother to see if the age of the people who passed away was a factor. We all know that as the population ages, the mortality rate among residents increases. The reporter's bias is also evident in his reference to the facility as an "institution", never clarifying that this is a CMS - approved and regulated intermediate care facility.

Second, the article fails to mention that, if the charges are true, that the level of care is not what it once was, that this is probably the result of the state's investment in HCBS waiver settings, and its having cut back on investment and oversight of its ICFs.


The article from the Salt Lake City Tribune falls prey to many of the same anti-institutional biases, and fails to take a deeper look into the situation at hand. According to people with whom I have consulted, the lawsuit in this case was actively engaged and promoted by the Utah P&A. Again, they made the claims of a few individuals into a class action suit. Rather than see that the individuals in question could be transferred to the type of facilities they desired, the P&A, Utah's Disability Law Center, engaged in a years-long lawsuit that resulted in a settlement that would move 150 people out of the ICF and into group homes in the first year, at a cost of over 7 million dollars, and another 100 inviduals in the years to follow.

Utah's Disablity Law Center doesn't seem to concern itself with the fact that there are not 150 beds in existing group homes waiting for these people, nor have they addressed the shortage of Direct Support Professionals that will be required to meet the needs of these people as they are moved around the state. P&A's like the Disability Law Center and the National Disability Rights Network are more concerned with eliminating ICFs from our system of care than they are with making sure that the HCBS facilities that they are tasked with monitoring and overseeing are meeting the standards of care that families expect of them. They have shown little concern for the lack of reporting of critical incidents that have happened on their watch. They fail to monitor the facilities in their states until after incidents occur, and fail to be proactive in investigating providers that have consistently high levels of problems.

It's time P&A's start cleaning up their own messes and stop trying to dismantle ICFs. And it's time states start to reinvest in their ICF system rather than bowing to the pressure of those who believe that one size fits all for this amazingly diverse population.
State News:
Iowa - Residents are dying at a state-run Institution
By Tony Leys, Des Moines Register, April 6, 2019
Employees at the state institution here have repeatedly warned officials that medical care for 200 of Iowa’s most disabled residents has eroded to a deadly point.

Fourteen Glenwood Resource Center residents have died since last June — more than twice the usual rate — according to public records, obituaries and interviews with former and current staff members.

Critics, including several former managers, say some of the deaths were unavoidable. But they believe others could have been prevented by more careful monitoring and aggressive treatment of the facility’s fragile patients. 

“It’s not normal to have this many deaths. This is too many to be a coincidence,” said Kathy King, a former administrator who retired last spring after 43 years at the state-run institution.
The western Iowa institution cares for adults with severe intellectual disabilities, such as from brain injuries, birth defects or seizures. Many of its residents can’t speak, walk or feed themselves.
Several leading members of the facility’s medical staff have quit or been pushed out since a new superintendent took over in September 2017. Public records show the losses include the unexplained firing of one of its three longtime physicians last year and the angry resignation of another.
The Iowa Department of Human Services, which runs the institution, denied that the rise in patient deaths was due to insufficient care.

Utah Legislators Agree to Pay Millions to Transition Intellectually Disabled Adults into their own Housing
By Bethany Rodgers, Salt Lake City Tribune, April 5, 2019
In coming years, scores of developmentally and intellectually disabled adults in Utah could move from institutional housing to community settings that offer them new freedom and independence.
The state has agreed to transition 250 individuals out of care facilities over the next five years as part of settling a lawsuit that accused Utah of “unlawful institutionalization and segregation” of disabled adults.

It’s a change that will be expensive for the state — with estimated costs of $7 million in the first year and even more afterward — some of that to provide rental assistance and skilled nursing services to individuals who choose to live on their own.

“I hope that at least it really does make things better for some folks,” said Rep. Ray Ward, who in the recent legislative session sponsored a resolution to approve the settlement agreement.

The lawsuit was filed early last year by Utah’s Disability Law Center and two adults who said they wanted to live in community settings but instead were stuck in care facilities that limited their privacy and their ability to do simple things like date or go to the movies.

One of the plaintiffs, Staci Christensen, a woman with Down syndrome, said she wanted to experience a romantic relationship, attend college
and take on more hours at the Golden Corral where she worked.

But Christensen was stuck living at Medallion Supported Living, an intermediate care facility. The state houses about 600 intellectually and developmentally disabled adults at facilities like these across Utah.

Ward, a physician by profession, said these institutions provide dorm-style housing with up to four people to a room.

"There are clearly some people living there who would like to live in the community," the Bountiful Republican said.

The state does run a program that consists of subsidized housing, assistance with home care and transportation, and other specific needs to allow an intellectually disabled person to live outside an institution.

But the average wait time is more than six years, and once a person is placed in an institution, he or she becomes a low priority to move into a different living situation, essentially making it impossible to get out of the intermediate facilities, the lawsuit states.

Pennsylvania - Fmr. Caretaker Accused of Abusing Disabled Adults at 2 PA Group Homes
By Gray Hall, WPVI TV, April 4, 2019
A man who once worked at a Philadelphia-based company that provides services for people with disabilities has been charged with allegedly abusing some of the people in his care.

Anthonio A. Montoya, 33, was arrested Thursday morning.

Police accuse the 33-year old of regularly abusing at least three adults in his care at two Northampton County group homes.

He didn't have anything to say as he left court but police are talking about the disturbing allegations that the suspect is accused of.

"Physically abusing mentally challenged, if you will, individuals with disabilities. Such disabilities as being autistic, some verbal, some non-verbal," says Detective Tony Stevens with the Bethlehem Police Department.

Montoya was a caretaker with Philadelphia-based Resources for Human Development, which provides services and programs for those with intellectual and developmental disabilities.
Police say they began their investigation in January after receiving reports of possible abuse at group homes in Bethlehem and Freemansburg.

Authorities say victims at the group homes accuse Montoya of physical abuse for several months. They allege the suspect hit them with his hands and also a Nerf bat.

Police say several witnesses admitted to seeing the alleged abuse.

In one case, Montoya is accused of putting a disabled man in a choke hold until his face turned blue. Police believe more people are involved in the abuse and there are more patients that were hurt.

"We believe there are more victims, yes. We don't have actual facts of that at this point and time but our belief is there are more victims," said Detective Stevens.

Texas - San Angelo State School Looking to Hire 200 Staff Members
By Matt Trammell, San Angelo Live, April 11, 2019
The San Angelo State Supported Living Center has announced a new salary structure and hiring bonuses for qualified job candidates who want to work in a meaningful, team-centered environment, providing services to people with intellectual disabilities.With a competitive job market and challenges recruiting staff, SSLC leadership identified a need to quickly hire more than 200 direct support professionals. The facility aims to retain current employees by offering salary increases and hopes to attract new applicants through hiring bonuses.

The SSLC is looking to hire people who will work directly with residents, provide individual care, active treatment and training, and use creativity to provide a stimulating environment for SSLC residents.

The center is offering higher salaries and a recruitment bonus of $2,000 to each new direct support professional. The center also is offering pay increases and one-time bonuses of $2,000 to all current, eligible direct support professionals. For those currently ineligible, merits will be awarded once staff meet criteria.

“We work with a wonderful group of people who have unique challenges in their lives. Our goal is to recruit people who want to truly impact others in a meaningful way. The difference we make each day is a great way to kick-start your career and find purpose in your employment. It’s not just a job, but a mission serving others,” said Scott Schalchlin, Associate Commissioner of SSLCs, Texas Health and Human Services Commission.
Nursing students, including students at the Angelo State University School of Nursing, also are encouraged to apply.

“Our undergraduate students—pre-licensure baccalaureate in nursing students—have been fortunate to be provided the valuable and sometimes life-changing opportunity for a clinical experience at the San Angelo State Supported Living Center,” said Wrennah L. Gabbert, Ph.D., Professor, ASU Department Chair and Nursing Program Director. “This center provides valuable experiences for our BSN students to interact with and assist in the daily care of the clients who reside at the center. They have reported they find a positive home-like atmosphere with excellent nursing care being provided for every client.”

“The San Angelo State Supported Living Center serves a critical, invaluable role in providing services and supports for people in our community with intellectual and developmental disabilities,” said Rep. Drew Darby. “It takes a special heart to care for society’s most vulnerable, and SSLC employees fill a very important role in helping clients live productive lives.”

Ohio Faces ‘Chronic Challenge’ Attracting Workforce to Help those with Disabilitiies
By Todd DeFeo, The Cleveland American,
April 10, 2019
Ohio faces a “chronic challenge” finding and keeping personnel to help residents with disabilities, but state lawmakers seem poised to increase compensation for such professionals.

Increasing compensation is a good first step toward alleviating the shortage and stemming turnover, Than Johnson, CEO of CRSI and a representative of the Ohio Provider Resource Association (OPRA), told members of the House Finance Subcommittee on Health and Human Services this week.

The shortage is making it difficult for nonprofit organizations to compete with for-profit companies. The association recommends removing the requirement that direct support professionals (DSPs) have a GED until the crisis ends and using the workforce shortage as an opportunity to hire more individuals with disabilities.

“The solutions are varied, but much depends on the ability to attract a workforce that is provided an appropriate wage and benefit and that allows us to compete with other healthcare entities,” Johnson said this week.
Several state agencies that help Ohioans with developmental disabilities are seeking double-digit budget increases. One component of those increases is an increased reimbursement for DSPs, including overnight support professionals, a push that seems to have bipartisan support, at least at the committee level.

“All of this talk about raising people’s wages and getting highly trained, highly qualified people to stay in these important jobs is refreshing to me,” Rep. Brigid Kelly, D-Cincinnati, said during a hearing this week.

Rep. Scott Lipps, R-Franklin, said lawmakers were “embarrassed that the state of Ohio would ask you as private providers to pay your staff $8.55 per hour, and then have the audacity to” reimburse providers at a lower rate.

“I, first of all, want to apologize for how that’s been handled,” he said before asking about whether a vehicle was in place to account for future minimum wage increases. Up to now, no such arrangement was in place.

Minnesota - Summit Hosted to Resolve Shortages of Health Care Workers in Northeastern Minnesota
By Alejandra Palacios, WDIO News, April 10, 2019
Shortages in the healthcare industry are a concern in northeastern Minnesota. Workforce centers in the area are working on finding a solution to this with the help of those in the industry.

The Minnesota Department of Employment and Economic Development, North East Minnesota Office of Job Training, and the City of Duluth Workforce Development, have been hosting the Northeast Regional Healthcare Workforce Summits since last year, where Healthcare employers brainstorm on ways to revive the industry.

The third summit was hosted Wednesday at the Mountain Iron Park & Rec Department. 80 people registered from 50 organizations across northeastern Minnesota.

"Top wages from most of our direct support professionals is only $12 an hour. It's hard to compete when they can go get a job at a fast food store or somewhere else where they can get $13 or $15 an hour," Jackie Conner, a program manager for the Residential Services Inc., said.
"We've looked at grant funding options for scholarship abilities to increase flow of candidates," Shayla Drake, an employee with the Duluth Workforce Development Board, said. "We are trying to get information from other areas in the region to find out what their needs are in healthcare employment so we can take that back to the Duluth area to our committee because we are working on pathways for different jobs needed in the Duluth area."

The industry has been struggling in keeping people in healthcare due to a number of factors like pay, work benefits and competition from other job fields.

"Retention, once we have people how do we keep them so that they are happy because wages are a concern for everybody that we hire," Conner said.

Tennessee - 'The life He was Dealt:' TennCare Bill for Kids with Severe Disabilities Now Behind the Budget
By Jessica Bliss, Nashville Tennessean, April 10, 2019
It would cost Ryan Tidwell's parents nearly $2,000 a week — more than $100,000 a year — to pay for their son's home health care out of pocket.
Ryan was born with spina bifida. Because his spine didn't form properly, he is unable to walk or sit up on his own. He depends on a ventilator to breathe. He is wheelchair bound.

Ryan's dad is a local police officer and a veteran who served in Afghanistan. His mom works in a doctor's office.

On April 15, they will lose Ryan's TennCare coverage because their salaries are too high.
Without TennCare, Ryan's family cannot afford the home-care nurse who goes with Ryan to school every day to help feed him, monitor his breathing and watch his vitals for signs of distress.

Ryan will not be able to ride the bus to school, because he won't have a nurse on the bus to monitor him. He will not be able to use his power wheelchair, because his parents do not have a way to transport it.

"He loves going to school, seeing and interacting with his friends," Ryan's mom Amy Tidwell said of her son. "He has made so much progress with going to school and having in-home therapy."

COVERAGE DROPPED: Tennessee erased insurance for at least 128,000 kids. Many parents don't know.
Legislation currently making its way through the Tennessee General Assembly is meant to help kids like Ryan by providing a pathway to Medicaid for children with severe disabilities, regardless of their parent's income.

On Wednesday, the House Finance, Ways and Means subcommittee became the latest group of legislators to hear the bill, which proposes a two-part program to provide services for 3,000 children statewide.

The fiscal note now attached to the bill estimates a total cost to the state of $27,344,100 — significantly lower than TennCare's original estimates. Because the bill needs state funding, the finance subcommittee moved it "behind the budget," which means the bill won't be considered until after the full Finance Committee advances Gov. Bill Lee's state spending plan.

Nevada - Commentary: Minimum Wage Bill Would Hurt Disabled Nevadans
By By Ed Zagaolo and Manola Zagalo. Las Vegas Review-Journal, April 6, 2019
There is an old adage that says, “The perfect shouldn’t be the enemy of the good.” This came to mind when we became aware of Assembly Bill 339. In essence, this bill would prohibit providers from offering job-training programs to individuals with intellectual or developmental disabilities unless those participants are paid at least the minimum wage.

The bill was amended last week to conduct a study on the issue. But if this proposal is approved some time in the future, it will force the closure of job and skills training programs, such as those provided by Opportunity Village, United Cerebral Palsy and Easter Seals, which operate community centers that help people prepare for a minimum wage or higher-paying job.

Community centers refer to organizations that provide job and skills training for people with disabilities, and the law allows for them to be paid by a production rate as opposed to an hourly rate.

This method can sometimes pay less than the minimum hourly wage because it takes some people with disabilities longer than others to complete a task. And there’s nothing wrong with that.

These centers are designed to provide more intensive training and coaching than typical workplaces. These types of settings provide a safe and appropriate atmosphere in which individuals with disabilities can learn skills in a comfortable, no-pressure, no-time limit environment. These are wonderful programs built on patience and compassion.

Our son Matthew is a young adult with Down syndrome. In May, Matthew will “age out” of the Clark County School District. Our hope and goal is to have him work in a community workshop.

For someone with Down syndrome, Matthew has wonderful skills. He is able to dress and feed himself, bathe, sight read, unload groceries and
engage in fun things such as swimming and navigating through YouTube to find the songs he likes. Matthew is a wonderful human being who brings joy to everyone he meets and knows — and, quite frankly, enjoys life more than many.

However, Matthew’s intellectual disability negatively affects his ability to function in a typical workplace without directive and intensive supervision. For example, Matthew is unable to speak other than a few words. As such, he is unable to communicate with supervisors in a typical workplace by exchanging personal information. He simply does not have these skills despite 19 years of speech therapy provided by the school district and 12 years of privately funded therapy. He has no conception of time or money, nor is he able to apply general instructions to unique situations. Finally, he has no recognition of community-based survival signs — e.g. don’t enter, don’t walk, watch out for cars — that are common in workplaces.

Given his unique circumstances and abilities, whether Matthew earns either a minimum or subminimum wage is unimportant. What is important is that he has the opportunity to find a place in the world where he is safe, productive and can enjoy the company of peers. Right now, that place is a community center.

As the parents of a child with a disability, we certainly get the moral imperative that society treats those with disabilities as the same or perhaps with more patience than everyone else. However, the original idea behind AB339 would eliminate the much-needed job and skills training programs in pursuit of the perfect. And that, according to the old adage, is a bad thing.

VOR Bill Watch:
There are currently seven bills in Congress that would discriminate against the more disabled members of the IDD community, three in the House of Representatives with companion bills in the Senate, and one that has passed the House and Senate and is awaiting the President's signature. We are following them closely, and over the next few weeks/months may ask our members to sign on to Action Alerts to share our objections with our elected officials. (Click on each bill to view details)

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.

H.R. 1839 - This bill has provisions to extend the Money Follows the Person Rebalancing Program , which has been used as a tool to remove people from ICFs with the intention of shuttering the facilities. MFP has been renewed for first three months of this year. The new bills would renew it for another 5 years. MFP was included in a package of 6 previously-approved healthcare bills, and passed in the House and Senate by voice votes without discussion. The bill is likely to be signed by the President soon.
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
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