November 8, 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
VOR and YOU:
It's Fundraising Season!

Fall is always our best fundraising season. This year, we have set some pretty high goals. And yes, that means that you will be seeing an uptick in our pleas for donations over the next two months.

* Sigh *

To keep things interesting, we have asked some of our members to introduce themselves and their loved ones, and to see how your generous donations have been appreciated over the years.
A Word from Joe and Dee Valenti

The need for an organization like VOR is critical in that there are so many individuals and families who do not have the resources and or skills to advocate for their love ones.  

Our son Donny currently lives at an ICF in Beatrice, Nebraska. We have tried to move him into the community, no less then three times over the years. On each occasion, the community providers were unable to provide for his needs.  

It is so important to have facilities in each state which are able to serve the needs of individuals with profound needs, which are not available through community providers. We are fortunate to have VOR which can mobilize resources and people to help legislators understand the need for ICF’s and the very important purpose they serve for this population of individuals who are not able to advocate for themselves.Thank you for your donation which will continue to allow VOR to serve this so important function. Dee and Joe parents of Donny. 

Donny Valenti
Thank you for your donation which will continue to allow VOR to serve this so important function. 

Dee and Joe, parents of Donny
National News:
Grassroots Movement Educating First Responders On Special Needs Interactions
By Jerry Davich, Post-Tribune via Disability Scoop, November 6, 2019

Emily Felter leaned into her father’s arms with a quick kiss and tight hug.Tom Felter Jr. reciprocated with a hug and kiss for his 24-year-old daughter who has Down syndrome. They stood in front of about two dozen guests at Casa Del Roma banquet center in Valparaiso.

“Are you going to help people sign in?” Felter asked Emily.

“No,” she replied sharply.
“OK,” he said with a chuckle.

Welcome to The Emily Talk, where Tom does most of the talking and Emily gets most of the laughs. For several years, they’ve offered an insightful presentation to help people interact with individuals who have special needs.

Felter, an ambulance paramedic with Porter Regional Hospital, originally geared The Emily Talk toward first responders, but has expanded to include just about anybody who works with the public. The goal is to teach how to avoid an awkward situation in casual conversation, but also to avert a potentially dangerous scenario for people with special needs.

Their program was spurred by the tragic outcome of a 2013 incident at a Maryland movie theater involving a 26-year-old man with Down syndrome. Ethan Saylor had just watched a film he enjoyed so much that he immediately returned to watch it again, without buying a ticket, while his aide left the building to get the car.

After Saylor didn’t leave the theater on request, three off-duty sheriff’s deputies forcibly removed him from the building and at some point, he wound up on the ground, face down. Saylor suffered a fractured larynx, and his death was later ruled a homicide as a result of asphyxia.

Trump Plan Would Weaken Disability Housing Protections, Advocates Say
By Blythe Bernhard, Disability Scoop, Nov. 8, 2019
A new Trump administration rule could make it harder for people with developmental disabilities and others to lodge discrimination complaints under the federal Fair Housing Act.

The U.S. Department of Housing and Urban Development’s proposed rule, which is likely to face legal challenges, would replace “disparate impact” guidelines regarding housing policies that indirectly discriminate against certain groups. The new rule would raise the burden of proof for people filing discrimination complaints and give landlords more authority to use algorithms such as minimum credit scores to reject housing applicants.

“Autistic people may face barriers to challenging rules that disproportionately burden us,” said Sam Crane, legal director and director of public policy at the Autistic Self Advocacy Network.

For someone with autism, for example, it could be harder to successfully challenge a landlord’s
requirement that housing applicants maintain full-time jobs.

Crane also pointed to a lack of protection for residents who can’t use automated phone systems to make service requests as an example of an unintended consequence of the rule.

In addition, it may become harder to challenge so-called “nuisance” laws that limit the number of emergency calls to a residence. If a neighbor calls 911 too many times under such a law for behavior they consider a disturbance, a person with autism could be evicted or lose their occupancy permit, Crane said.

Senators Join Effort To Increase SSI Asset Limits
By Michelle Diament, Disability Scoop, November 5, 2019
A push to allow people with disabilities receiving Supplemental Security Income to keep more assets and remove a penalty affecting those who marry is gaining steam.

Members of the U.S. Senate introduced legislation last week that would significantly increase the amount of money that SSI beneficiaries can retain.

Under current law, individuals receiving SSI generally cannot have more than $2,000 at any given time. The figure sits at $3,000 for couples.

The measure known as the Supplemental Security Income Restoration Act, or S. 2753, would raise that cap to $10,000 for individuals and $20,000 for couples.

In addition, the legislation would increase the level of income that SSI beneficiaries can take in each month while removing penalties for those who are married and ensuring that couples receive double the benefit rate of individuals.

A similar proposal is already under consideration in the House of Representatives.

State News:
Michigan - For Parents of Autistic Adults with Aggression, There are Few Mental Health Care Options Available
By Taryn Asher, Fox 2 Detroit, November 5, 2019
While he became aggressive at an early age, a strong support system and daily routine helped Jacob Malec keep his frustrations under control. And then he turned 18.

"All of a sudden he turned 18 and something clicked in his brain. So this has been going on since August and he's having sometimes two, three, four meltdowns a day," said Jodi Malec, Jacob's mom.

Jacob is non-verbal and has autism. It was age 4 when he began to show aggressive tendencies, but his family found ways to control and divert outbursts. But since becoming an adult, those outbursts have turned physical.

His parents have videos and photos of Jacob where his hand is bloody from him biting it or holes in the drywall where he's slammed his head against. Every time his dad or caregivers try to stop Jacob from the outbursts, he goes into attack mode.

"I just try and keep him away from the walls and the windows so he's not injuring himself. That frustrates him more. He lashes out more, hitting
me, smacking me, grabbing my wrist, pinching me trying to bite me," said Keith, Jacob's dad.

Despite the Malec's frequent calls to the police to help with their son who hurts himself during tantrums, they say that even hospitals aren't equipped to handle the needs of their sons.
Keith will hold his son on the floor until the medication kicks in. However, since August, the Malecs have needed to rely on first responders for help. 

"We literally have tried everything. The only reason that we take him in to the hospital and call 911 is because at some point we're just like 'okay, we can't handle him anymore,'" said Jodi.

Unfortunately, the Malecs believe not even those institutions are capable of taking care of Jacob or his needs. It would take an inpatient facility to help Jacob - the kind that just isn't available in Michigan. They say the state has nothing available for adults like Jacob who suffer from aggressive episodes.

Lewiston Couple Sues DHHS for $1 Million for Disabled Daughter
By Christopher Williams, Sun Journal, November 2, 2019
The local parents of a woman with autism and other disabilities are suing the state, claiming their daughter can’t return to Maine and live here safely because the treatments she needs aren’t allowed by Maine’s Department of Health and Human Services.

Deana and Kregg Kane are seeking $1 million to cover the cost of having their daughter, now 20 years old, treated in a program at a residential setting in Maryland, alleging the department is in violation of the Americans with Disabilities Act.

In their complaint, filed Friday in U.S. District Court in Portland, the Kanes said their daughter was diagnosed with autism, disruptive, impulse-control and conduct disorders, as well as intermittent explosive disorder.

When she was 5 years old, she started attending the Margaret Murphy Centers for Children in Auburn, which specializes in programming for children with disabilities, including autism. The girl “exhibited difficulties with aggression and self-abuse,” according to the civil complaint.

Eleven years later, when she was 16, she was engaging in “4.2 incidents of aggression or self-abuse per day,” the complaint says.

But her behavior worsened, according to the complaint, because DHHS wouldn’t allow her to be treated with applied behavioral analysis, or ABA, a program designed to “reduce problem behaviors and increase appropriate skills for individuals with intellectual disabilities, autism and related disorders.”

The complaint says ABA is recognized as the standard of care by the U.S. Surgeon General, the National Institute of Mental Health and the Centers for Disease Control. Other than ABA, “no scientifically validated treatment mechanism has had success in teaching people with disabilities to reduce or eliminate problem behaviors.”
By the time she was 18 years old, the girl had blinded herself in one eye. Roughly six months later, “her harmful behaviors had increased to 414 per day,” the complaint says.

Because of the girl’s dangerous behavior, the Auburn center referred her to the neurobehavioral unit of the Kennedy Krieger Institute of Baltimore, Maryland. She was admitted there in June 2018.
At that time, her behavior included punching herself in the face, slamming her body into walls and floor, and pulling her hair, according to the complaint.

She was aggressive toward others and ran from caregivers.

The Maryland institution is nationally recognized as an expert in the field of ABA, according to the complaint.

After five months at that institution, the teen’s harmful behaviors had dropped to a rate of less than one per hour and “she was ready to be discharged into an appropriate setting in the community.”

In August 2018, personnel at the institution and Maine’s DHHS started planning her return to Maine. Officials at the institution stressed the need for a community placement that would include an ABA-based behavior plan.

The state balked, saying state law and regulation barred the ABA procedures used by the institution, according to the complaint.

Massachusetts - Disability Abuse Registry Proposed
By Ed Baker, Wicked Local, November 4, 2019
A proposed state law would create a Disability Abuse Registry and list caregivers who have been charged or convicted of mentally or physically abusing a person with developmental or intellectual disabilities.

The proposed “Nicky/Dana’s Law,” by state Sen. Patrick O’Connor, R-Weymouth, and Sen. Michael Moore, D-Milbury, is being reviewed by the House Ways and Means Committee.

State senators unanimously approved the bill Oct. 17.

“This is the second (Senate) session that this bill was passed,” said Daria Afshar, a legislative director for O’Connor. “It is pending before the House Ways and Means Committee. It is waiting for the House to take it up in a debate. Hopefully, they will do that this session.”

The legislative session for lawmakers ends July 1, 2020.

“This bill is about shining a bright light on the care industry, and it’s about giving employers the tools they need to ensure that they are hiring caring professionals who would never even think of harming a person with intellectual or developmental disabilities,” O’Connor said.
The law would require a group home or caregiver to check the Disability Abuse Registry before hiring an employee.

A caregiver convicted or charged with mentally or physically abusing a person with developmental or intellectual disabilities would not be eligible for employment.

The law would require the state Disabled Persons Protection Commission to take action against an employer who fails to check the registry when screening prospective employees or utilizing a caretaker whose name is listed.

A caretaker who is listed by the registry can petition the Disabled Persons Protection Commission to remove their name from the listing. The commission will be allowed to review a caretaker’s petition, five years after their name was listed by the registry.

Florida - ‘It Strips Them of Their Dignity’: Changes Possible for Florida’s Flawed Guardianship Program
By Greg Fox, WESH-2 News, November 8, 2019
Florida's embattled guardian program could be in for major changes aimed at protecting the most vulnerable from abuse and exploitation.
Dr. Sam Sugar learned about Florida's guardianship program when he and his wife Judy were caring for her mother, Idelle.

Judy's sisters convinced a court Idelle was better off in the hands of a professional guardian who would manage her medical care and finances. The guardian and took control of her legal rights and when Idelle suffered a stroke, the Sugars had no say in her treatment, until she died.

“This guardianship destroyed my wife. It strips them of their dignity and everything they ever owned. And it treats them as though they are pieces of property,” Sugar said.

Encouraged by others' stories, the retired doctor founded "Americans Against Abusive Probate Guardianship” (AAAPG) to try and cure guardianship law.
In Tallahassee, he championed a bill that created the Office of Public and Professional Guardians in 2016. The office is supposed to make sure complaints are investigated, and violators punished.

But in July, court documents revealed Central Florida professional guardian Rebecca Fierle had signed do not resuscitate orders – or DNRs- for more than 140 of her wards.

One of those people was Steven Stryker, who died just days after Fierle refused his daughter’s request to remove the DNR.

WESH 2 Investigates has been examining audits that show Fierle also double-billed AdventHealth and wards for services unreported to the courts.

Tennessee Preparing to Launch Disabled Insurance Program
By Kimberlee Kruesi, Associated Press via Times-Union, November 5, 2019

Tennessee would no longer be the only state in the country that does not have a program offering coverage for children with significant disabilities living at home under a proposal currently being reviewed by the federal government.Commissioner Brad Turner, who oversees the Department of Intellectual and Developmental Disabilities, said Tuesday the state submitted a waiver in September asking the federal government for approval to allow disabled children to get Medicaid assistance whose families wouldn't otherwise qualify in the state.

"We're moving forward building this under the assumption this is going to be approved by January 2020," Turner said. "We are building that apparatus right now so as soon as they give us the green light we can start having those conversations about intake."

Known as a Katie Beckett program, the initiative was named for an Iowa girl whose health plight led then-President Ronald Reagan to change Medicaid's rules in 1981. It allows states to extend services to children even if their parents aren't poor enough to qualify for Medicaid.

That's because under federal law, when a child is in a medical institution for at least 30 days, the parents' income does not count while determining the child's eligibility for Medicaid. However, that provision goes away when the child leaves the institution. The Katie Beckett program is an option for states to help families pay for therapy and medical equipment to maintain kids at home.

Currently, Tennessee only covers "medically eligible" children in households with income 200% below the federal poverty level, disqualifying many families because they have too high of incomes or assets under the state's Medicaid program.

Pennsylvania - Nation’s Largest Health Insurer Fined Over Autism Claims
By Harold Brubaker, The Philadelphia Inquirer via Disability Scoop, November 8, 2019

Pennsylvania officials this week announced a $1 million fine against insurance giant UnitedHealthcare for denial of, or sometimes failure to pay, customers’ claims relating to mental health care.UnitedHealthcare also inaccurately calculated consumers’ total out-of-pocket costs for claims relating to autism, according to the state Insurance Department. The company’s actions were in violation of the federal Mental Health Parity and Addiction Equity Act of 2008, officials said.

The Mental Health Parity act requires health insurance plans to contain equivalent levels of coverage for mental health and substance use disorder care as for medical or surgical care, the Insurance Department said. This law covers quantitative limitations, such as copays, deductibles and limits on inpatient or outpatient visits that are covered, plus other restraints on getting care, such as pre-authorizations, the number of providers available through a plan’s network, and what a plan deems “medically necessary.”

UnitedHealthcare said it worked closely with state officials to address their concerns.
“While we have already made changes, we will continue to make improvements to help individuals get care under their plans,” the company said in a statement. “We will collaborate with the Insurance Department to help more Pennsylvanians meet their mental health needs by providing additional resources and education to help them understand and access their benefits.”

In addition to paying the fine, UnitedHealthcare agreed to spend $800,000 on a public outreach campaign to educate Pennsylvania consumers about their mental health and substance use disorder benefits, and to pay an unspecified amount of restitution to consumers whose claims were wrongly denied, who overpaid out-of-pocket-expenses and who incurred interest on delayed claims.

VOR's Fall Membership & Fundraising Campaign

VOR relies on donations from families like yours
to help us to give a voice to families like yours.

It's just that simple.
In Memoriam:
William Edward Campbell
June 30, 1927 - November 4, 2019
Past Director of Glenwood Resource Center, Iowa
Dr. William Edward Campbell, 92 of Glenwood, Iowa, passed away on November 4, 2019 at the Midlands Living Center in Council Bluffs, Iowa.

Bill worked 50 + years for the State of Iowa with 35 of those years spent as superintendent of the Glenwood Resource Center (formerly known as the Glenwood State Hospital-School). He was instrumental in the construction of 37 residential living units for the clients who had been living in dormitories and other multi-story buildings on the campus.

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 Bill Watch:
Click on blue link to view information about the bill


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. 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. Both issues deserve clean, stand-alone bills.

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.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


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).

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