August 2, 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:
Happy Birthday!
Medicaid Turns 54!
Click on your state to find out how Medicaid works for your neighbors, using this interactive map from the Center on Budget and Policy Priorities

National News:
Justice Department Faces Scrutiny Over Autism Wandering Program
By Michelle Diament, Disabiliity Scoop, July 30, 2019
The U.S. Department of Justice is on the hot seat amid attempts to allocate funding intended to address the needs of kids with autism and other developmental disabilities who wander.

Sen. Chuck Schumer, D-N.Y., is pressuring the agency to follow through on its obligations under Kevin and Avonte’s Law.

The law, which was signed last year, called for $2 million annually through 2022 for grants to local law enforcement and nonprofit agencies. The money can be used to provide electronic tracking devices to families of those at risk of wandering or for education, training, notification systems and other efforts to prevent or better respond to elopement.

However, Schumer’s office said that rather than make funding available to local agencies as called for in Kevin and Avonte’s Law, the Justice Department folded the wandering program into a larger grant for a national center to improve police
response to people with mental health conditions as well as intellectual and developmental disabilities.

Now, the grant solicitation is being amended and reissued, Schumer said.

Research indicates that about half of kids with autism have a tendency to wander away from safe places. While many parents use tracking devices to monitor children who elope, advocates say the devices generally incur a monthly fee making them out of reach for some families.

The Justice Department said it is working to respond to Schumer’s letter, but declined to comment otherwise.

On the 20th Anniversary of the Olmstead Decision
The Administration for Community Living (ACL) released a video of its June 25, 2019 celebration of the 20th Anniversary of Olmstead.

VOR members would serve themselves well to view this video. It contains many of the key national players involved in setting disability policy, and it shows their limited views, some would say their deliberate misrepresentation, of what the Supreme Court said in Olmstead.

Hosted by Julie Hocker of the ACL, featured speakers at the presentation include Roger Severino, Director of the Office of Civil Rights at the Department of Health and Human Services (HHS), Eric Harding, Deputy Secretary of HHS, Dr. Amy Hewitt, Director of the Institute of Community Integration at the University of Minnesota, Melissa
Harris, Acting Deputy Director for Disabled and Health Programs at the Centers for Medicare and Medicaid Services (CMS), Eric Dreiband, Assistant Attorney General, Civil Rights Division, U. S. Department of Justice, and Lance Robertson, Administrator and Assistant Secretary for Aging, ACL.


NASUAD, the National Association for States Uniting for Aging and Disabilities, will be hosting a webinar on Wednesday, August 7, at 2:00 pm Eastern time

Overview of ACL’s Protection and Advocacy Systems

The webinar will feature Jennifer Johnson and Ophelia McLain of the ACL.
VOR members are encouraged to attend.

Not National News, Not State News Either:
Puerto Rico

Puerto Rico is a U.S. Territory. It's residents are U.S. citizens. Like other U.S territories and the District of Columbia, they have an elected representative in Congress, though that representative has no vote and therefore limited influence.

This week, the Administration for Community Living (ACL) announced that they and the Administration for Disabilities will be realloting $2 milli on ithat had been awarded to the State Council on Developmental Disabilities (SCDD) in Puerto Rico. The Notice of reallotment claims that under law, “If the Secretary determines that an amount of an allotment to a State for a period (of a fiscal year or longer) will not be required by the State during the period for the purpose for which the allotment was made, the Secretary may reallot the amount.”

The ACL claims the determination was based on the "limited reported expenditures and requests for reimbursement over the last several years from the SCDD in the Commonwealth of Puerto Rico."

According to a 2017 report from the ACL, which cites data from 2015, 45.1% of the residents of Puerto Rico live below the poverty line. There are no intermediate care facilities for people with intellectual disabilities (ICF/ID). Medicaid Home and Community Based Waiver Services are not available in Puerto Rico. The Medicaid State Plan is administered as a block grant for all health services,and there are not specific funds allocated towards disability services. The people of Puerto Rico are not eligible to participate in the Supplemental Security Income Program (SSI).

There is a limited mix of government-supported and private services for adults who do not have family members who are able to provide care. The Center for Habilitation within the Department of Health serves a limited amount of people, and there is often a wait list. Some people with disabilities are also living in public housing. The Developmental Disabilities Council has provided funds to support special demonstration projects of independent living homes. These homes can house between six and eight adults. Some private nursing facilities provide care for individuals with disabilities who are able to pay for services with their own funds.

Below is an article from December of 2016, detailing the state of services for people with disabilities, and intellectual developmental disabilities, in Puerto Rico. From all of this material, one has to question why the Administration for Community Living has determined to take away $2 million in funds that had been previously allocated to the I/DD population of Puerto Rico.
The Disabled in Puerto Rico Fend for Themselves after Decades of U.S. Neglect
By Robin Respaut, Reuters News Service, Dec. 9, 2016
Amid the island’s economic crisis, citizens with severe mental and physical problems in the U.S. territory receive $74 a month of aid - about a tenth of what people in the states get.

Juanita Gomez Cruz irons clothes and fries pasteles to help support her family. At 77, she is the sole caretaker for her elderly husband Pedro and her adult son Dafner, both of whom are disabled.

Pedro, 65, lost part of his foot three years ago to diabetes. Dafner, 51, suffered so many seizures as an adult that his mind turned off, she said. Now, he can’t dress or feed himself and doesn’t recognize family members. He spends his days in bed or slumped in front of the TV.
Both men depend entirely on Juanita – a slender, cheerful woman – as both a breadwinner and a nurse. Juanita depends on help from above as she nurses her own health problems.

“I’m suffering from my knees. I feel tired,” she said in Spanish. “I pray to God to give me strength.”
Disabled citizens across Puerto Rico get almost no help from either the local or the U.S. government. For 40 years, Congress has repeatedly refused to give the impoverished island – a U.S. territory – the same support it provides disabled Americans in the 50 states under the federal Supplemental Security Income program (SSI).

The island’s disabled deserve better from the federal government, argues Puerto Rico’s delegate to the U.S. Congress. “Of all the disparities that Puerto Rico faces,” said Pedro Pierluisi, “none is as shocking to the conscience – or as unappreciated by policymakers and the public.”

Pierluisi, as the outgoing resident commissioner, represents Puerto Rican interests in Congress but gets no vote, one illustration of the island’s long-standing political predicament. Puerto Ricans have U.S. citizenship, and the island has been under U.S. control since it was ceded by Spain in the Treaty of Paris in 1898. But Puerto Rico and the other territories have neither self-determination nor the federal financial backing accorded to U.S. states.
Disability benefits are one of many ways in which the U.S. government has shorted Puerto Rico, and these disparities have exacerbated many of the island’s economic problems. For example, federal funds cover a small fraction of Puerto Rico’s outlays for Medicaid, the public health insurance program for low-income families.

For years, Puerto Rico sought help from the municipal bond market to shore up its Medicaid budget. Over time, healthcare-related debt grew to constitute an estimated one-third of Puerto Rico’s massive $70 billion of outstanding bonds.

The disabled in Puerto Rico are lost in the larger crisis. Instead of getting SSI benefits, they have only a meager and nearly forgotten federal program from the 1960s, called Aid to the Aged, Blind, or Disabled.

he program now exists only for the territories, and funding has been capped since 1996. It offers just 1.3 percent of the money that would be provided if Puerto Rico were a state, the Government Accountability Office found in 2014.

Recipients receive $74 monthly on average for living expenses, compared to the $733 a disabled person can collect in the states. The lack of benefits has contributed to nearly half of Puerto Rico’s disabled community living in poverty – twice the rate of those in the 50 states.

Adding to the disparity, Washington treats the disabled differently in each territory. The Northern Mariana Islands gets the same support as a state, and the average payment is $560 monthly. Recipients in Guam and the Virgin Islands get $164 and $176, respectively, each month through a patchwork of federal programs. American Samoa receives nothing.

In Puerto Rico, fewer than 37,500 islanders receive the limited allotment. If Congress extended SSI to Puerto Rico, eligibility would expand ten-fold to 354,000.

For most people, “if you are unemployable and can’t get a job, there’s not going to be any services for you,” said Myrainne Roa Mendez, head of Puerto Rico’s State Council on Developmental Disabilities. “Mom and dad will have to take care of them.

State News:
Utah - Care for the Medically Fragile: A Special Report
Private 24-hour care facilities house more than 600 people in Utah who are disabled, but after legislative failures they say they are struggling to stay alive.
By Sara Martin, ABC-4 News, July 31, 2019
Private 24-hour care facilities house more than 600 people in Utah who are disabled, but after legislative failures, they say they are struggling to stay alive. These Intermediate Care Facilities (ICFs) are the subject of a lawsuit settled during this past legislative session aimed at expanding care options for individuals, but ICF caregivers say the suit may have had unintended consequences.
Tophams Tiny Tots is one of 16 private ICFs in the state, all paid for by Medicaid reimbursement. It’s where Alice Sutton chose to place her son Stephen when he was just four years old, already too fragile to care for at home.

Sutton said, “They saved my life is how I feel, and I view them as a partner. I trust them, we’ve built that trust over 28 years. They’re his second family.”

Stephen is one of 42 people currently being cared for at Tophams where individuals receive medical care, skills training, individualized treatments, and all other necessities. 

Back in 2018, the Disability Law Center (DLC) brought a class-action lawsuit against the Department of Health; it argued that the state of Utah wasn’t in compliance with a supreme court decision stating a person should be given access to community-based resources, instead of treatment in private facilities, whenever possible. 
Laura Henrie is an Associate Legal Director at the DLC and a lawyer on the case. She said that after visiting with people living in ICFs, her team was asked over and over to help individuals move out.

“As we looked into it, the way that the system was set up, it was actually really really difficult for a person to move out of an ICF if you wanted to take your services with you.”

The Department of Health calculates that a person in an ICF costs the state about $70,000 per year, but when that person transitions to community-based services the cost of their care goes up to $100,000 per year. 
The lawsuit named two individuals who had unsuccessfully tried to relocate, calling ICFs institutions and claiming that in some cases they were segregated, isolated, overcrowded, and understaffed.

Sutton said she bristled as she read the lawsuit. “To talk about how they are segregated is not true, that they’re left in dirty diapers and sitting in front of windows and staring all day is not true, my experience has been the complete opposite.”

Christine Mason is the Licensed Nursing Home Administrator and the third generation of women in her family to run Tophams since it opened 43 years ago.
Mason said, “I feel that their lawsuit is somewhat ridiculous. It negatively affects us because our census numbers will get so low that we can’t keep our doors open and provide the services we have for 43 years.”

The class action was settled this spring during the legislative session with the decision that over the next four years the number of people offered the opportunity to transition out of an ICF and into community care options would increase from about 16 per year to 50 people per year, the overall goal is to lower the total number of ICF beds in Utah from about 600 to about 400. 

But the legislature also cut funding intended to help ICF’s survive that transition. 

Nate Checketts, Deputy Dir. of the Department of Health explained, “They did not fund one of the requests which we contemplated as a part of our full package and that was a $2.4 million quality incentive for the ICF’s.”

Illinois - Rep. Meier’s Bill Requiring DHS Notification of 9-1-1 Calls Becomes Law
Tthe Office of Rep. Charlie Meier, July 26, 2019
Governor J.B. Pritzker recently signed legislation sponsored by State Representative Charlie Meier (R-Okawville) to require all emergency calls made from Community Integrated Living Arrangements (CILAs) otherwise called “group homes” to be reported to the Illinois Department of Human Services (DHS). The new law is in response to reports of abuse and neglect which occurred in group homes for the developmentally disabled.

“It’s about time mandated reporting of all emergency calls from group homes became law,” said Rep. Charlie Meier. “In the past the public was unaware of the emergencies which took place in group homes because emergency calls were kept secret. Thanks to this new law, these secrets are a thing of the past.”

The Chicago Tribune reported in their story titled SUFFERING IN SECRET: Illinois hides abuse and neglect of adults with disabilities, identified 1,311 cases of documented harm since July 2011 and determined at least 42 deaths linked to abuse or neglect in group homes or their day programs.
The Tribune articles came to light thanks to the Murray Parents Association working with the newspaper to expose the abuse and neglect which took place in group homes throughout the State.

The intent of Public Act 101-0075 (HB 3069) sponsored by Rep. Meier is to ensure in the event of an emergency, the CILA resident is receiving the proper follow-up care and accommodations.

Arizona - Families on Tight Deadline to Move Loved Ones from Hacienda Facility
By Carissa Planalp, AZ Family,
Jul 30, 2019
The scandal at Hacienda Healthcare is now affecting even more families after a patient was raped and gave birth, and another was found to have maggots in a surgical opening.

The shocking incidents happened within the Intermediate Care Facility, but the Arizona Department of Health confirmed Monday the neighboring unit, Hacienda’s Skilled Nursing Facility, is set to close.

Judy Shingleton says her family received a call Friday saying her grandson, Dillan Owens, would have to be moved out of the Skilled Nursing Facility by Sept. 5.

“Everything’s been going well until Friday, and it’s like, oh, it’s just so stressful,” says Shingleton.

Owens is now 21-years-old, but Shingleton says he’s been through a lot. Doctors discovered Owens had a brain tumor when he was 9 years old, and multiple surgeries followed through the years. When Owens was 15, Shingleton says one of the procedures went horribly wrong, and her grandson suffered brain damage
The decision to place Owens at Hacienda more than a year ago was heartbreaking, but Shingleton says, an amazing nurse has made a difference in her grandson’s life. “She just knows what makes him tick and what works,” says Shingleton. “Consistency is everything with these kids.”

Shingleton believes moving Owens will have a severe effect on him. She’s been shopping around for other facilities, but Shingleton says the reviews are frightening.

“People just said do not put your loved one here, I mean, that’s all you kept hearing over and over no matter which facility you were looking at,” says Shingleton.

She believes Hacienda has left families in the dark, and she’s worried about her grandson’s future.

New York - Opinion -
Rep. Lee Zeldin: N.Y. Justice Center Not Doing Justice for People with Special Needs
By Denise Civiletti, Riverhead Local, August 1, 2019
While many workers do an outstanding job caring for individuals with disabilities in our communities, I have also heard many deeply disturbing stories about victims of neglect and abuse. The current system is failing them and improvements are desperately and urgently necessary. Dozens of allegations related to staff abuse, patient neglect, sexual assault and even death have been reported over the last few years.

That’s why, in December, I was joined by New York representatives Peter King, Elise Stefanik, and Tom Reed in demanding accountability for the New York State Justice Center for the Protection of People with Special Needs for their failure to protect individuals with disabilities and Medicaid recipients who have died under state care, including nine who died while in state care in Suffolk County since 2013. The Department of Justice responded stating they would “carefully consider the information in determining whether to open an investigation,” but just since December,
there have been multiple additional instances of abuse that have come to light.

The mission of the Justice Center is “supporting and protecting the health, safety, and dignity of all people with special needs and disabilities through advocacy of their civil rights, prevention of mistreatment, and investigation of all allegations of abuse and neglect so that appropriate actions are taken.”

This mission should be carried out by investigating all reports of abuse and neglect in group homes, conducting rigorous audits of providers, pursuing administrative sanctions on staff who fail to carry out this mission and working concurrently with district attorney offices to prosecute the subjects of these investigations.

Indiana - 13 Investigates Uncovers Pattern of Abuse, Neglect in Group Homes for the Disabled
By Sandra Chapman, WTHR-13, July 29, 2019
Indiana's most vulnerable residents are often cared for in group homes with round the clock staff.

No one disputes it can be a tough job, but when you have an industry with high turn over rates and improperly trained workers, group homes can become places of extreme abuse.

13 Investigates' Sandra Chapman uncovered troubling issues for a provider with a network of group homes across the state and the country.
One of these group homes is in a house located on Atwood Court in Fishers. The home is operated by ResCare, one of Indiana's largest residential care providers, and is where Indiana's most vulnerable are supposed to be protected.

Records show that protection wasn't extended to Anthony Harris who lived at the ResCare group home in Fishers. Harris has cerebral palsy and is completely disabled and non-verbal.

A caregiver admitted to viciously beating Harris in 2017.

Michael Anderson was charged and plead guilty to criminal battery in the case and sentenced to six years in prison.
13 Investigates has learned ResCare now has a confidential settlement with the Harris family.
But troubling questions remain, like how Michael Anderson was even hired by ResCare?

Court documents show Anderson had prior criminal convictions, including a drug offense and an animal cruelty conviction when ResCare hired him. According to Indiana law, animal cruelty is defined as "intentionally beating a vertebrate animal."
In the animal cruelty case, Anderson plead guilty in 2012 to a criminal misdemeanor.

Then in 2014 and 2015, he was arrested on two separate drug possession charges. As part of a plea deal he admitted guilt in one case and got the other case dismissed. Even after Anderson was hired, a ResCare worker reportedly told management Anderson was smoking marijuana on the job, according to Benkie.

"Armed with that information, how could you in good conscience hire someone and have them entrusted to a person and persons who are totally helpless?" Benkie asked with dismay.

Missouri Reaches More than $1 million Settlement in Disabled Man's Death
By Andy Alcock, KSHB-4 News, July 26, 2019
After the death of a developmentally disabled man in Missouri's care, the state has paid more than $1 million to settle a federal lawsuit.

Carl DeBrodie's badly decomposed body was found in a garbage can encased in concrete in a Fulton, Missouri, storage locker in April 2017.

DeBrodie, 31, had been staying at Second Chance Homes, a Fulton facility contracted by the Missouri Department of Mental Health's Division of Developmental Disabilities.

"They went through that provider enrollment process, and then they were basically out there and could start making themselves available for families and guardians to select as a provider," said Valerie Huhn, director of the Division of Developmental Disabilities.

The money to pay for providers such as Second Chance Homes comes from both federal and state tax dollars.

According to the now-settled federal lawsuit and ongoing criminal cases, Second Chance Manager Sherry Paulo and her husband, Anthony Flores, had DeBrodie fight another client for their amusement.
"We want the person or whoever done this to my son to pay," said Carolyn Summers, DeBrodie's mother.

Those court records also say that in the fall of 2016, DeBrodie had a seizure from his injuries in those fights.

Flores and a client placed DeBrodie in a bathtub and turned on the shower in an effort to get him to snap out of it, according to court records.

"And there was never any type of outside medical care requested or attempted to be given," said Rudy Veit, Summers' attorney in the federal lawsuit.

DeBrodie died in the bathtub.

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


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. 3253 & S ??? - Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 - This bill would authorize nearly two billion dollars over four years for the Money Follows the Person Demonstration Program.

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. Both issues deserve clean, stand-alone bills.
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