February 22, 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

Sheltered Workshops:

VOR's 2019

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

Plan now!
This will be an important year for I/DD advocacy
VOR Action Alert

Join us to Ask Congress to Exclude ICFs from the
Money Follows the Person Rebalancing Act Renewal

Money Follows the Person (MFP) is a federal grant program that has been used by states to incentivize the closing of Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs). Members of Congress are working to extend MFP for an additional number of years. 

On paper, MFP is about choice. In practice, that is often not the case. MFP overrides family decision-making and choice when states close state-run ICFs and finance the closings with MFP dollars. MFP also negates the choices of individuals and their families when states use MFP dollars to incentivize providers to close private ICFs.

Many of our members signed on to this Action Alert last year. (Thank you!)
This is a new campaign, because this is a new bill in a new Congress.

If you have not signed on to this campaign in the last two weeks, we ask that you sign on now.

We urge legislators to carve out ICFs from the MFP program so that the health care choices of ICF residents can be protected.

You can help protect ICF care. Please act TODAY by contacting Congress to ask them to remove ICFs from any future legislation to extend the MFP program.  Just click below to access a pre-formatted letter that can be automatically sent to the appropriate Congressional leaders.
National News:
Patient With Intellectual Disability Blocked From Organ Transplant List
By Shaun Heasley, Disability Scoop, February 18, 2019
Federal officials say that a major university health care system will change its ways after denying a person with intellectual disability the opportunity to be placed on a transplant list.

The U.S. Department of Health and Human Services’ Office for Civil Rights said it has reached a resolution with the University of North Carolina Health Care system over a complaint alleging that a doctor decided that an individual with intellectual disability would not be a good candidate for a heart transplant because of their disabilities and the fact that the person does not live independently.
The complaint, which was brought in September 2018, indicated that the individual would eventually die without the transplant.

Under the agreement announced this month, UNC Health Care will amend the patient’s medical records to say that they are eligible to be considered for a spot on the transplant list.

The Coming Care Crisis as Kids With Autism Grow Up
The number of adults with autism diagnoses is soaring, but there aren’t enough programs and services to meet the demand.
By Noah Remnick, The Atlantic, Feb 20, 2019
The Medicaid provider had assured her that this was the best option, so Marie Solomonik walked into the day-habilitation center in Queens, New York, with all the optimism she could muster. Marie was with her husband, Eddie, on this rainy March morning to scout out the facility for their son, Anthony, who has autism.

“This place makes my skin crawl,” Marie whispered.
“Just promise me you’ll keep an open mind,” Eddie responded.

In the past, centers like these had been a torment for Anthony. There was the time in middle school when another boy hit him in the face with a metal lunch box. There were the girls in the park who mocked him relentlessly for being nonverbal. And there was the incident during gym class when he tripped on the treadmill and got caught in the conveyor belt. By the time anyone noticed him trying to scream, nearly all the skin had been flayed from his knees.

The horrors were enough to persuade the school district to cover the costs of a specialized
schooling program on Long Island, where Anthony has since seen steady improvement. But the Solomoniks had now lost their funding: On March 4, Anthony turned 21, the age at which people with disabilities are no longer entitled to a free public education under federal law—a juncture often called the “ “services cliff.”. And for many American families, the drop off this cliff leaves them scrambling, with few, if any, suitable options.

For more than a year, I’ve followed the Solomoniks as they’ve approached the dreaded precipice and grappled with a series of unenviable, and often unanswerable, questions: What kind of government subsidies can they expect for housing? Programming? Medication? And then they have more existential concerns: What constitutes a meaningful life for an adult with autism? Would slotting Anthony into a menial job be better, or would continuing his education, no matter how expensive or seemingly futile, be more worthwhile? And who could they possibly trust to consider these issues after they die?

Special: Equine Therapy
VOR's Jane Anthony sent us the article below.
Her son Jason has greatly benefited from his years of Equine Therapy.
The Healing Power of Horses: How Equine Therapy Benefits Veterans, Victims of Abuse & More 
By Nicola Bridges, Parade, February 15, 2019
n 1991, 11-year-old Jaycee Lee Dugard was abducted while walking from her home to a nearby school bus stop. She was sexually assaulted and confined for 18 years before she and the two daughters she had in captivity were recovered from kidnappers Phillip and Nancy Garrido.
How do you start to heal after a trauma like that?

One of the things that helped the most, Dugard says, was horses. She and her children and mother did equine-facilitated therapy (EFT) with Rebecca Bailey, a clinical and forensic psychologist who specializes in complex trauma scenarios. Dugard was so impressed with the experience, she went on to found the JAYC Foundation to give other families in crisis the same access to healing.

“Horses have the special ability to make you be totally in the moment, making talking about the trauma I went through so much easier and less painful,” says Dugard, now 38. “The work Dr. Bailey was doing really resonated with me. The way she incorporated horses into our sessions was so much more impactful than just regular talk therapy.”
In fact, EFT is a fast-growing therapeutic mental health treatment being used across the nation for everything from trauma and addiction recovery to therapeutic riding for special needs, including autism. The therapy can involve learning to care for a horse, riding or simply being around and learning to trust the animals. A mental health counselor and equine specialist are often present.
Veterans, inmates and first responders are all finding benefits in getting off the couch and into the stables. Elizabeth and William Shatner are big supporters of the therapy, and even judges have discovered that a session with horses makes them better at their jobs.

Although equine therapy itself hasn’t been deeply studied, research shows that horses are acutely tuned in to human emotions, and anecdotal accounts of their therapeutic impact abound.

Expansion of Special-Needs School to Include Equestrian Center
By Elizabeth Campbell, NEWS4JAX, Feb 21, 2019
A groundbreaking ceremony Thursday morning marked the beginning of construction on a 32,000-square-foot expansion at the North Florida School of Special Education.

With more than 200 students and a wait list for all classes, the special-needs school on Mill Creek Road in Arlington has outgrown its current space.
More than 100 people, including Mayor Lenny Curry and his wife, Molly, attended the groundbreaking of the expansion of the North Florida School of Special Education.

"Eight classrooms for elementary and intermediate students. There will be a state-of-the-art music room, art therapy room, all of our speech occupational therapy, physical therapy rooms. There will be a full-size gymnasium, commercial kitchen," Head of School Sally Hazelip said.
Also included in the expansion is Jacksonville's first urban equestrian center, which will offer equine therapy.
Making the expansion even more exciting is the fact that the new facilities, including the equestrian center, will not only be open to students. People throughout the community will be able to take advantage of the facilities and the services after school hours and on weekends. 

Pamela Harvey and 6-year-old Presley Harvey know firsthand how helpful the equine therapy will be. 

"She didn’t learn to walk until she was 4 years old," Pamela Harvey said. "We had her in horse therapy by about age 2 and without it, she probably would not be walking as well as she is today."

State News:
Arizona - The Parents said it was a Special-Needs Bed. The State said it was a Cage
The line between "restraint" and "safety" can be difficult to define
By Mary Jo Pitzl, Arizona Republic, Feb 6, 2019
It was the way the bed looked. More like an oversized crib, or even a cage, than a bed. Its tall wooden slats, locks and hinged doors screamed “restraint” to state health officials who saw it in the bedroom of Julianna Wadsack, a teenager with severe disabilities.

But to Julianna’s parents, it was a safe place for their daughter to sleep, a guard against her wandering when caregivers were preoccupied, lest the child walk into walls or, worse, collapse on the floor from a seizure.

Their battle with state authorities over the bed that Julianna’s doctors had prescribed dragged on for 2 1/2 years, burned through $100,000 in attorney fees and challenged the notion of how much – or how little – restraint is allowed when caring for individuals with developmental disabilities.

The bed that dominates Julianna's bedroom is no ordinary sleep system for a teenager. It's a piece of durable medical equipment, designed to provide a safe environment for people with neurodevelopmental disorders and obtained through a medical prescription.

Julianna has many of those disorders: cerebral palsy, intractable epilepsy syndrome, autism and severe intellectual disability. She also has various physical disabilities, including scoliosis, blindness in one eye and limited vision in the other.

Her parents, Garret and Justine Wadsack, bought the KayserBettern bed in 2012, paying $25,000 through Garret's insurance. It has slats on its tall sides and on top to keep Julianna, now 15, from climbing out. It has locks on the hinged doors and an extra-long mattress that fits tightly against the rails to prevent an individual from getting wedged between bedding and slats.
For four years, the respite caregivers provided by the state's Developmental Disabilities Division put Julianna in the bed at the end of the day and pushed the lock so she wouldn't wander if she woke up. It also was a useful way to keep her safe if a caregiver needed to step away to use the bathroom, clean the room or prepare a meal.

But that changed in October 2016.

It was a routine visit from a coordinator with the state's disabilities division. She stopped at the Wadsacks' Tucson home for an annual review of Julianna's care plan.

Justine, who was busy supervising a contractor working on the home, thought it was odd that the coordinator left Julianna's room after about 15 minutes with little comment.

Her concern mounted a week later when a Department of Child Safety investigator showed up, responding to a complaint about child neglect.
The next evening, officials with Rise Services Inc., the caregiver agency, showed up at the house and, according to Justine, insisted their staff no longer use the bed. They said they were prohibited from touching it because it is considered a restraint under state rules — even though they'd been using the bed and its locks for four years.

One of their caregivers told the Wadsacks she felt bad for Julianna because she was being kept in a "cage." Justine fired her on the spot, offended that she characterized Julianna's setting as a prison.

Massachusetts - Supported Decision Making Bill Needs Clarity and Safeguards
By Dave Kassel, The COFAR Blog, February 21, 2019

We’ve recently expressed concerns about “Supported Decision Making” (SDM), a growing movement to restrict guardianships of persons with developmental disabilities and replace those guardians with “networks” of more informal advisors.
In that vein, a bill to promote SDM in Massachusetts (HD.666 in the House and SD.843 in the Senate) does little to alleviate our concerns.
We think SDM can hold promise for some high-functioning individuals, and we would support its adoption with adequate safeguards, particularly safeguards against the potential marginalization of family members.
The problem with the bill is that there appear to be few, if any, such safeguards in it, and the bill provides no standard for determining who might be eligible for an SDM arrangement.
Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to help them make decisions about their care, finances, living arrangements and other areas. SDM proponents maintain that guardianship unduly restricts the rights of disabled individuals to make those decisions.
But the bill skirts the question whether everyone is really capable of making their own decisions in those very important areas. The bill states that, “with support, many people with disabilities can make their own decisions…” (our emphasis). That statement actually says very little.

What the bill does state explicitly is that under SDM, the developmentally disabled individual is the “decision maker” regarding their services and their financial and legal affairs.
But can someone with a profound intellectual disability, for instance, be considered capable of making their own decisions even with assistance from an SDM team? As one public advocacy organization put it in relation to SDM, is it possible for anyone to make their own decisions “if they do not have…an appreciation of the significance of the decision they are making or a reasonably consistent set of values?”

West Virginia House of Delegates Preserves Minimum Wage Exemption for Disabled Workers
By Joselyn King, The Intelligencer/Wheeling News-Register, February 21, 2019

The new executive director of Russell Nesbitt Services says workshops for the disabled couldn’t operate if they were forced to pay all disabled workers minimum wage.Monday was Jane Ketcham’s first day on the job at Russell Nesbitt. It was also the day the West Virginia Legislature heard debate on House Bill 337, a measure addressing minimum wage and maximum hours standards for workers in the state.
Currently workers at nonprofit shelter workshops are exempt from earning the state’s minimum wage of $8.75 an hour. An amendment offered by Delegate Chad Lovejoy, R-Cabell — which would have eliminated the exemption — was rejected by delegates.

“It is a good thing it was shot down,” Ketcham said. “There are individuals who have the capability for some work, and who want to work — but not the capability to justify giving them minimum wage.”
The amendment, she said, would have eliminated many disabled individuals from workshops.
“Some amount of work is better than none,” she said.

“Some of these folks benefit not only from the money, but from the work environment, the social interaction, and the self-esteem that comes from working.

“This would have been an unfunded mandate. We simply couldn’t have operated a shelter workshop, and we would have had to close.”

Ketcham said there are 31 workers in the workshops at Russell Nesbitt who earn minimum wage or above, while as many as 58 workers earn less. Some are paid an hourly rate, while others are paid by the piece.

Washington State Senate: Arguments For and Against Eliminating Special Wage Certificates for PWD
By Jill Barker, The DD News Blog, Feb. 2, 2019
Sub-minimum wage certificates allow employers to hire people with disabilities for less than minimum wage when disabled employees are not able to work at full capacity equal to their non-disabled peers doing the same job. Special wage certificates are often used to support people in center-based work programs (sheltered workshops) that may also provide an array of other services in addition to employment. When these programs are eliminated for people with more severe and complex disabilities, against their will and over the objections of their families, they often end up working fewer hours or not at all, spending more time at home watching TV or other unproductive activities. The alternative, "supported employment" in competitive integrated work settings, can be very costly and is not always desired by or as satisfying for the person with a disability. 
The video is from a hearing in the Washington State Senate about Senate Bill 5753 proposing to eliminate sub-minimum wage certificates. The arguments, pro and con, are laid out by two Senators with opposing views. Make sure that you listen long enough to hear the testimony of Senator Walsh that starts at around 3 1/2 minutes.

Delaware - State Must Raise Pay for Adult Caregivers, Advocates Say
By Matt Bittle, Delaware State News, February 21, 2019

In 2018, the General Assembly unanimously passed legislation to raise the hourly rates the state pays to subsidize services provided by caregivers for individuals with intellectual or developmental disabilities.
The bill phases in increases for the caregivers, who are also known as direct support professionals, so that over a three-year period the reimbursement would grow from 75 percent of the hourly market wage established in a 2014 study to 100 percent.

Advocates hailed its passage, with one nonprofit calling it a “milestone” and supporters speaking of the good it would do in helping attract and retain direct support professionals, benefiting both those employees and the population they care for.

But the measure does not bind the General Assembly to fund those increases, and Gov. John Carney’s proposed budget marks only a small increase in the rate.

His plan for the fiscal year starting July 1 would bump the state funding from 81.2 to 83.3 percent of the market rate at a cost of just under $2 million to Delaware’s General Fund.

That hike, many advocates said during a Joint Finance Committee hearing Thursday, is not enough.
Officials from the Division of Developmental Disabilities Services detailed to lawmakers on the committee their agency’s work and budgetary needs, followed by testimony from more than a dozen members of the public. Both direct support professionals and parents of individuals with disabilities urged JFC to increase the rates beyond what Gov. Carney recommended.

“I have faced many hardships throughout the years, too numerous to mention all,” Tamika Crosell, who has worked as a direct support professional since 1995, said. “I have had times where I had to choose whether I should pay my rent in full and chance having my car insurance canceled or buying unhealthy, cheap foods just so I can stretch my paycheck. …

“I have also left this field once or twice because there were other jobs that pay more, and I know of many others who have done the same. Those of us who are passionate about supporting individuals with disabilities are being forced to look elsewhere for employment even though that is not where our hearts are.”

VOR Bill Watch:
There are currently seven bills in Congress (four in the House of Representatives with three companion bills in the Senate) that would discriminate against the more disabled members of the IDD community. 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. 260 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. We expect to see another bill introduced soon to renew it for another 5 years.

H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care".

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]
Notice: Meetings of the President's Committee for People with Intellectual Disabilities (PCPID)

The Administration for Community Living announced earlier this week that there will be two meetings in March to prepare their 2019 report to the President. Currently, the report is a self-congratulatory piece on their work to move all individuals with IDD to full integrated employment, close sheltered workshops, eliminate 14 (c) wage certificates.

In their discussions, one member of the committee have raised the matter that some individuals will never be able to participate in competitive integrated employment and that the opportunities for work that these individuals currently enjoy will be taken away from them, resulting in their spending hours every day on the sofa watching television or being driven in a van to the mall. Nonetheless, the committee plans to move ahead with the elimination of these programs.

What has happened to our system, that the people charged with protecting and providing services for the IDD community have turned their backs on the most severely disabled members of that community?

The PCPID meetings are open to the public, though the public is not allowed to comment. The schedule for these meetings is:

Monday, March 4 - 11:00 a.m. to 12:30 p.m. (EST) . This is a virtual meeting, via telephone. Members of the PCPID may speak, the public may listen in. To attend the meeting, dial (888) 949–2790 and use pass code 1989852.

Thursday, March 21, and Friday, March 22, from 9:00 a.m. to 4:30 p.m. (EST) (same time both days)
Hubert H. Humphrey Building, 200 Independence Ave. SW, Room 800, Washington, DC 20201 . The public is invited to attend, but not comment, or to listen in remotely, at (888) 949–2790 using the pass code 1989852.

The American Health Care Association / National Council for Assisted Living

AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019

AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.

Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.

If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,  Dana Halvorson .  

VOR's 2019

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

Plan now!
This will be an important year for I/DD advocacy
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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