August 31, 2018
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
As summer ends and we head into fall, we expect to see a great deal of legislative activity in courtrooms and statehouses across the country, and in Washington, D.C. as the elections draw near and the 115th Congress enters its final days.

VOR's mission is to advocate for all individuals with intellectual and developmental disabilities, and we want our members to be aware of what legislation is being proposed and how it may affect the lives of our our families and our loved ones. We understand and cherish the diversity of political, economic, and social views of our members, and hope that in presenting articles or published opinions that our readers strive to look at both sides of every issue. There are no simple solutions to complex problems, but an informed and active membership can help to create the solutions that better serve our loved ones.
International News
Report on Developmental Disabilities among Children Younger than 5 Years in 195 Countries and Territories, 1990–2016
The Lancet, August 29, 2018
The following report covers the UN's continued work on individuals with developmental disabilities worldwide from 1990 to 2016. It contains too much detailed information to include here, but some VOR members may find some of the data useful.


Early childhood, commonly defined as the first 5 years of life, is the fastest period of growth and the period in which the developing brain is most sensitive to stimulation and nurturing. This period of development is regarded as the foundation for subsequent educational and vocational attainment at the individual level, and for overall human capital and economic development at the population level.
The UN's Millennium Development Goals (MDGs) focused largely on reducing under-5 mortality, especially in low-income and middle-income countries (LMICs). By contrast, the UN's Sustainable Development Goals (SDGs) from 2015 to 2030 envision improvements in the broader health status of children beyond survival.

Alongside the general recognition of people with disabilities in several of the SDGs, SDG 4 specifically requires actions to monitor the proportion of children younger than 5 years who are achieving their developmental potential in health, education, and psychosocial wellbeing, disaggregated by disability, age, sex, geographic location, and other characteristics.

I mplications of all the Available Evidence

Although under-5 mortality halved between 1990 and 2016, there has not been a corresponding improvement in non-fatal health outcomes among childhood survivors globally. The number of children younger than 5 years at risk of suboptimal development in LMICs is likely to exceed 350 million (roughly three in every five children), even without inclusion of all known disabilities in GBD 2016. The absence of any systematic attention to developmental disabilities has had greatest effect in sub-Saharan Africa, where the number of affected children increased by more than 70% between 1990 and 2016, despite an overall decrease in prevalence worldwide during this period.

The SDGs now present a comprehensive framework for addressing the burden of developmental delays and disabilities among survivors of the leading causes of child mortality in the early years of life, especially in LMICs.

More crucially, local health and educational systems should be appropriately equipped to support affected children and their families optimally. Although the prevalence of conditions such as ASD and ADHD typically peak at school age or later, some children will require timely intervention from early childhood. Global investment is needed to improve primary data sources for developmental disabilities to minimise uncertainty around the estimates of non-fatal health outcomes in most countries.
The Lancet began as an independent, international weekly general medical journal founded in 1823 by Thomas Wakley. Since its first issue (October 5, 1823), the journal has strived to make science widely available so that medicine can serve, and transform society, and positively impact the lives of people.
National News
Federal Appeals Court Rules In Favor Of Mainstreaming
By Meghan Mangrum, Chattanooga Times Free Press via Disability Scoop, August 29, 2018
For the last five years, Luka Hyde’s family has argued in multiple federal courts that their 15-year-old son should have been allowed to stay in a public school classroom, despite his intellectual disability.Now, the 6th Circuit Court of Appeals has handed them a major victory that will have a broad effect on the rights of students with disabilities in Tennessee, Michigan, Kentucky and Ohio.

“Throughout history, the stain of unnecessary segregation has been overcome through the law. I am tremendously proud of this contribution, and a little boy — now young man — named LH,” said the family’s attorney, Justin Gilbert. “The law of Tennessee, Michigan, Kentucky and Ohio will bear his name, reminding us all that kids with intellectual disabilities belong. They are to be included. And we are all the better for it.”

Sixth U.S. Circuit Court of Appeals Judge Alice Batchelder ruled this month that Hamilton County Schools violated a federal guideline that protects students with disabilities when it sent then-second-grader Hyde to a Red Bank Elementary comprehensive development classroom in 2013, where he would spend half his days separated
from general education students. Hyde has Down syndrome.

Batchelder’s 25-page opinion dealt primarily with mainstreaming, which calls for students with disabilities to spend as much time as possible in regular classroom settings. She said the case, which came to her from Chattanooga’s U.S. District Court, “is really an argument against ‘mainstreaming’ as a concept, because HCDE believes it is impossible, impractical or counterproductive.”

She also noted if that “is truly HCDE’s view, then it is worrisome, and inadvertently supports L.H.’s parents’ experts’ opinions that HCDE teachers and staff reject mainstreaming because they do not understand it, do not believe in it, and need extensive training on why it is valuable and how to do it.”

Texas v. United States: The Latest Court Case to Threaten Health Coverage for Millions
Opinion, From Families USA,
Analysis by Cheryl Fish-Parcham, August 2018

On September 5, a Texas Federal District Court will hear arguments in the case Texas v. United States, a case that threatens access to health care and coverage for millions of Americans.  

The Texas Attorney General is leading a group of 18 Republican state attorneys general (TX, WI, AL, AR, AZ, FL, GA, IN, KS, LA, MO, NE, ND, SC, SD, TN, UT, WV), two governors (ME and MS), and two individual plaintiffs in challenging the Affordable Care Act. These state and individual plaintiffs are urging the court to overturn the entire health care law now that the individual mandate is no longer being enforced. What’s more, the Trump administration is not defending the law, instead arguing that protections for people with preexisting conditions should be struck down.

On the other side, California Attorney General Becerra is leading a group of 17 Democratic attorneys general who have intervened to defend the law (CA, CT, DC, DE, HI, IL, KY, MA, MN, NJ, NY, NC, OR, RI, VT, VA, WA). Families USA, along with Community Catalyst, the National Health Law Program, the Center on Budget and Policy Priorities, and the Texas-based Center for Public Policy Priorities, has filed an amicus brief in the case. Numerous patient organizations, health care providers, scholars, and individual consumers themselves have also weighed in with declarations and amici to explain the importance of retaining health insurance protections for older people and people with preexisting conditions, as well as other parts of the health care law that are at risk including premium tax credits, Medicaid expansion, and the many other health care improvements made by the Affordable Care Act.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
State News
Florida - Autistic Man Abandoned at Naples Hospital has No Place to Go
By Liz Freeman, Naples Daily News, August 27, 2018

A public guardian and a state agency thought they had a solution for a severely autistic young man whose mother abandoned him more than a year ago at a Naples hospital.

Placement in a local group home lasted four days before the 22-year-old — referred to as “John Doe” in court records — was back at NCH Downtown Baker Hospital, said Patrick Weber, the public guardian in Collier County. 

Doe's care requires intensive services in a 24-hour setting, and no group home in Collier is equipped for that, experts say.

The young man can smile and acknowledge people around him but is nonverbal; he can’t speak about his fears and wants, Weber said.

Doe was first taken to NCH in May 2017 for emergency medical care, court records show. He was hospitalized for treatment and cleared for discharge in mid-August 2017. The catch is that the hospital had no place to send him.

NCH cannot comment on specific patient cases because of privacy laws, but in general, hospitals have a responsibility to use inpatient hospital beds for patients who medically require that level of care, spokeswoman Debbie Curry said. “Unfortunately, on a somewhat regular basis, many hospitals are put in the unfortunate position of having to address situations involving patients who do not (or no longer) require hospital care, but who are without a safe discharge plan due to a lack of family involvement, funding, or other circumstances beyond the hospital’s control,” Curry said in a statement.

“These situations ultimately result in millions of dollars of uncompensated care annually to the hospitals involved,” Curry said.

Indiana - Group Home Owner, 4 Workers, Charged in Beating of Resident, Prosecutors Say
Crystal Hill, Indianapolis Star, August 14, 2018

The owner of an Indianapolis group home for adults with intellectual and developmental disabilities and four workers have been charged in the beating of a resident that was caught on video, prosecutors say.

Safe Journey LLC owner Amelia Hagedorn, 50, has been charged with criminal confinement with bodily injury and battery resulting in bodily injury to a disabled person, the office of Marion County Prosecutor Terry Curry said Tuesday night in a news release.

Three Safe Journey employees, Sharita Bell, Danielle Moore and Carmele Journey-Starks, face the same charges. A fourth, Sara Clancy, was charged with failing to report the incident.

Last month, Marion County Adult Protective Services investigator Jason Fletcher received a report alleging physical abuse of a woman at a Safe Journey facility on Madison Avenue, according to court documents. State authorities had placed the woman in Safe Journey’s group home and day program at the south-side location, a probable cause affidavit said.

The woman told another investigator she got upset with Hagedorn and threw a ball at her on July 12, 2018, according to the affidavit. Hagedorn then used the ball to strike the woman, court documents said.
Prosecutors said a video shows a Safe Journey worker sitting on the woman while hitting her multiple times in the head and face, the affidavit said. Other employees forcibly held the woman down during the beating, the affidavit said.

The woman yelled that she couldn’t breathe and was having issues with her asthma, but the workers refused to stop, prosecutors said.

Iowa - Iowa Agrees to Give Medicaid Management firms 7.5% Raise to Continue Running Program
Tony Leys, Des Moines Register, August 24, 2018
Iowa has agreed to give 7.5 percent more state money to the two private companies managing its $5 billion Medicaid program, officials announced Friday.

The agreement will keep UnitedHealthcare and Amerigroup in Iowa, but it will mean state leaders must come up with about $103 million more than last fiscal year.

The new agreements cover the current fiscal year, which began July 1. The increase in state spending is more than double the 3.3 percent increase the state agreed to for last fiscal year.
Overall, the new contracts will give the two companies raises of 8.4 percent in state and federal money, totaling $344 million.

The companies have complained about losing hundreds of millions of dollars in Iowa due to reimbursement rates they said were set far below
their costs when the shift to private management began in 2016. A third Medicaid management firm, AmeriHealth Caritas, bailed out of the project last fall after failing to get the contract terms it sought from Iowa officials.

The raises come amid continuing controversy over whether Iowa should have hired private companies to run its Medicaid program in 2015.

Critics say the shift has led to cuts in services and loads of red tape. Supporters, including Republican Gov. Kim Reynolds, say it is leading to more efficient, effective care, and is saving taxpayers millions of dollars compared to what they would have otherwise spent.

Montana - Medicaid Providers, Recipients Anxiously Await Budget Restoration Details
By Corin Cates-Carney, Montana Public Radio, August 29, 2018

Many of Montana’s poorest and most vulnerable people — and the health care providers who serve them — are anxiously awaiting news from Governor Steve Bullock this week. Bullock is expected to release his plan to restore some funding to health programs for the state’s poor and disabled that have been devastated by budget cuts over the last year.

MTPR Capitol Reporter Corin Cates-Carney is here now to talk about the upcoming announcement.

Eric Whitney: The Bullock administration is saying that it’s “restoring” cuts to Medicaid — but it’s not a 100 percent restoration, right? Not every program that was cut will be brought back to the same funding level it was at before the cuts? Or is all the money that was cut being backfilled?

CCC: No, not all the money that was cut will be backfilled. The special session resulted in $49 million being cut from the state health department, and last month, the governor said there’s now enough in state coffers to restore about $30 million of that. When the Bullock administration made that announcement, it held a big hearing to get public input on what the top priorities should be.

EW: And so this week all the people who rely on those health programs, and the state contractors who provide a lot of them, they’ve been anxiously awaiting the announcement of what exactly will be restored, and which $19 million worth of programs and services will remain cut.

CCC: Right. And on Tuesday the Bullock administration released a plan for some restorations, saying that it was rolling back a Medicaid pay cut. That was one of the more controversial cuts in the package of spending reductions to balance the state budget. It basically told all the doctors, clinics, hospitals and other health care providers who serve Medicaid clients that the state was going to reduce how much it paid them by about 3 percent. Many of those providers have said for years that Medicaid already doesn’t cover what it costs them to provide care, or is break-even at best. And that pay cut is what caused lots of the non-profits that serve Medicaid clients to lay off staff or just plain shut down.

EW: How many agencies closed, or jobs were lost?

CCC: According to one count by the Behavioral Health Alliance of Montana, 10 offices closed across the state. All of those were in rural towns. And just over 100 jobs were lost.

How Montana’s Mental Health System is Struggling to Stay Afloat after Cuts to Medicaid Reimbursement Rates for Case Managers
NBC News, August 27, 2018

"We have been hit with a massive tsunami in the State of Montana, and our entire safety net has unraveled. We literally don't have the capacity to hold this up any longer."

Pennsylvania - Open Letter: Programs at Risk

By Susan Jennings (VOR Board Member and PA State Coordinator), Public Opinion - USA Today, August 29, 2018

This is an open letter to citizens of the Commonwealth, our elected leaders, leaders of faith communities, leaders of the medical community and members of the media. My interest in writing is because of our son Joey, age 27, and because of the growing public need for intermediate care facilities (ICF) services.

In July 2016, at 25 years of age, the youngest of our four children was admitted to White Haven State Developmental Center, a state-owned and operated licensed intermediate care facility offering residential treatment services for individuals unable to care for themselves and whose care is beyond the capacities of their families. 

To gain admission for our son at White Haven State Center, we were forced to go through the court system. Joey's admission was opposed by the Commonwealth's Office of Developmental Programs (ODP), which has a policy of "closed admissions" to the state's four ICF programs.

The ODP mission is to downsize, consolidate and close our state's facilities for people who cannot care for themselves.
I ask for your help for our at-risk family members with disabilities. Please join with me in preserving the option of state-operated ICF programs – White Haven State Center, Ebensburg State Center, Selinsgrove State Center and Polk State Center.

For more information, please visit
Susan Jennings, Mansfield

Texas - Texas Education Agency Chooses Familiar Face to Lead Special Education Overhaul
By Aliyya Swaby, The Texas Tribune, Aug. 31, 2018
For the first time in nine months, the Texas Education Agency has a special education director, as it continues a massive overhaul of the way it oversees the education for thousands of students with disabilities.

Last Friday, Justin Porter, previously the TEA's executive director of special populations, was officially hired as statewide director of special education — allowing him to continue his outsize role in directing how the agency will ensure school districts are serving kids with special needs. A federal investigation this winter concluded that Texas was illegally denying students with disabilities access to the tools and services they need to learn.

With the effective cap on special education services lifted, the agency is projecting that its percentage of students in special education, once at a national low of 8.5 percent statewide, will level out at around 12.2 percent by 2021 — hundreds of thousands more students.

That increase will cost the state an estimated additional $3 billion over the next three years, according to Leo Lopez, the TEA's chief school finance officer. But the agency will have a more realistic estimate of the cost increase at the end of the current academic year, likely after lawmakers approve a two-year state budget during the 2019 legislative session.

A nearly seven-year veteran of the agency, Porter will be in charge of a more robust department developing policies on how to use state and federal special education funds, and reaching out to state and local groups advocating for kids with disabilities. He will report to a yet-unnamed deputy commissioner of populations and monitoring, who will report to Penny Schwinn, the chief deputy commissioner of academics.
The TEA is still in the throes of a major reorganization, based on its special education strategic plan, which Porter helped develop this spring. The deputy commissioner of populations and monitoring will oversee Porter and four other department directors to perform new roles, including monitoring school districts' compliance with federal special education law and providing technical assistance to educators.

The agency has already hired a director of review and support, a director of escalation, and a director of dispute resolution and strategic supports — and it plans to hire a director of special populations. In total, the TEA has hired about 70 percent of an approved 51 positions to carry out its strategic plan for special education, according to TEA spokesperson DeEtta Culbertson.

Porter's predecessor, Laurie Kash, was fired last November, after she filed a federal complaint against the agency, claiming it illegally awarded a $4.4 million no-bid special education contract.

The TEA said it fired her because she had hidden allegations from a prior job that she had covered up sexual abuse of a minor. Months after Kash's firing, the agency terminated the contract and conducted an internal audit of its contracting processes.

Special education advocates had angrily railed against Schwinn and Porter for entering into the contract with data mining company SPEDx, arguing it would not help find and help the thousands of students who have been denied special education services for years.

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