time persons with I/DD must spend outside their home and whom they can spend that time with. Is this any less discriminatory? Doesn’t this also violate the principles Justice Ruth Bader Ginsberg laid down in Olmstead?

Seniors often choose to live in planned developments or over 55 communities with other older adults. Imagine what would happen if the government told these people, “there are too many seniors living in this building. You have to move.” Sounds crazy, right? But, this is exactly what states are saying to individuals with I/DD. No other segment of society is treated in such a way, and more importantly, no other group would tolerate these types of restrictions.

Our policy approach needs to be flexible enough to accommodate the immense diversity within the I/DD population. There is no one-size-fits-all solution to their needs. The best way to preserve choice is to honor the decisions made by those with I/DD, and for those who lack the mental capacity to choose, we must respect the decisions made by their families and caregivers. We believe this is what the ADA and the Olmstead decision intended, and this is what we stand for.

Read the full editorial here

Disability Rights Ohio and other advocates for people with developmental disabilities sued the state in 2016, arguing that Ohio was violating the federal Americans with Disabilities Act by operating a system that makes it difficult or impossible for people to get the support and services they need to live and work in their communities instead of institutions. Disability Rights said at the time that more than 2,000 Ohioans wanted to leave an ICF but faced a years-long wait for one of the Medicaid waivers that helps pay for noninstitutional care.

“What the public should know is that when given the option of community settings or an intermediate care facility for individuals with intellectual disability, ICF residents overwhelmingly chose to stay in their ICF,” said Caroline Lahrmann, whose adult twins have profound disabilities and reside in an ICF.

Disability Rights has said it is not advocating for the closure of larger residential centers or sheltered workshops, but that no one should feel stuck.

“ICFs are absolutely a part of our system, and the department’s fully committed to maintaining that option,” said Jeremiah Wagner, a spokesman for the state Department of Developmental Disabilities. “There’s more money being invested across the whole system to an array of services. I don’t think anyone’s being squeezed.”

Koebel said he’ll suggest that the court include language in the final settlement that preserves funding for ICFs as long as the agreement is in effect.

Click here for full article and instructions for how Ohio residents can submit comments

“The state must do everything it can to protect individuals with disabilities in their care,” state Comptroller Thomas P. DiNapoli said. “Jonathan’s Law was created to make sure incidents of abuse and neglect are properly addressed and families are told of what occurred. This law can’t work if state agencies aren’t fully complying with the law’s requirements. This is the second state agency my auditors have found that is failing to meet their obligations.”

The law requires that facility directors release a report 10 days after an incident detailing what steps a center took to address the issue, but in 7 percent of incidents reviewed at OPWDD centers, that was not the case. Facilities also did not offer incident records to family members within 21 days of their request for documents, as mandated by law: 20 of 63 records requests evaluated were not distributed on time or at all, according to the audit.

DiNapoli recommended that OPWDD issue new guidance to its facilities detailing "clear and consistent implementation procedures," as auditors found that employees at multiple facilities were confused or did not know about their requirements under Jonathan's Law. He also suggested that the office utilize its online incident reporting database to analyze and address cases where there may be a violation.

Click here for the full article

Click here for the NYS Comptroller's Press Release and link to full report

Without doubt, many of the children being secluded are challenging. Records show school employees struggling to deal with disruptive, even violent behavior, such as hitting, kicking and biting. Workers say that they have to use seclusion to keep everyone in the classroom safe and that the practice can help children learn how to calm themselves.

But disability advocates, special-education experts and administrators in school systems that have banned seclusion argue that the practice has no therapeutic or educational value, that it can traumatize children — and that there are better alternatives.

No federal law regulates the use of seclusion, and Congress has debated off and on for years whether that should change. Last fall, a bill was introduced that would prohibit seclusion in public schools that receive federal funding. A U.S. House committee held a hearing on the issue in January, but there’s been no movement since.

Nineteen states prohibit secluding children in locked rooms; four of them ban any type of seclusion. But Illinois continues to rely on the practice. The last time the U.S. Department of Education calculated state-level seclusion totals, in 2013-14, Illinois ranked No. 1.

Although state law requires schools to file a detailed report each time they use seclusion, no one is required to read these accounts.

Several school district officials said they had not reviewed seclusion reports from their schools until reporters requested them. The Illinois State Board of Education does not collect any data on schools’ use of isolated timeout and has not updated guidelines since issuing them 20 years ago.

Click here for the full article

Each year, tens of thousands of Minnesotans with disabilities and their families undergo this agonizing, high-stakes ritual, known as a comprehensive needs assessment. A stranger with a laptop comes to their home and asks hundreds of questions about the medical needs and care of their loved ones.

Can your daughter feed herself? Is your son aggressive toward others? Can your father use the toilet alone? What does a “bad day” look like? A few careless answers about medications, or a forgotten detail about an emergency room visit, could spell disaster for these families. The right response could bring thousands of dollars in assistance to pay for nursing care, physical therapy and medical equipment; the wrong answer could consign the family to a life of sleep deprivation, medical emergencies and isolation.

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“That leaves a notable gap for the non-Medicaid and uninsured population.”

This change has resulted in an 80 percent reduction in funding for mental health residential treatment, such as PBH’s Arlene Engel House in Port Angeles, for non-Medicaid individuals said PBH Executive Director Wendy Sisk.

Sisk said this becomes a problem because many of the people seen by PBH are covered by Medicare, though Medicare doesn’t pay for many of the services being provided.

At the Arlene Engel House, PBH cares for seven people who are not covered by Medicaid and who became qualified for Medicare because they became disabled early in life.

“We have seven people and we now have funding to serve one,” Sisk said. “These are individuals who, in most states, would live in psychiatric institutions; people with profound schizophrenia who can not take care of their basic health and safety needs on their own.”

Read the full article here

Watch the video story here

It’s not just a problem in Fort Bend ISD, one of the largest districts in the state. It’s a challenge for districts across the state as Texas tries to fix serious problems with special education. In 2018, federal regulators ordered the state to stop capping the number of children who could receive services and to ensure all kids with special needs are identified. 

Already, the Texas Education Agency has seen the number of students tested for special ed services soar by 56%, to 138,000 evaluations in 2018-19.

But no region in Texas has enough licensed school psychologists to meet national staffing recommendations and keep up with that kind of demand.

Statewide, there’s only one licensed school psychologist for about 2,800 students, though national guidelines say there should be about one for every 500-700 students.

Read the full article here

Y“The Department of Human Services (DHS) is seemingly unmoved by the heartfelt appeals from the families of the residents who will be uprooted by the closure of Polk and White Haven State Centers,” Senator Hutchinson said. “That means the Legislature must act to protect these vulnerable individuals. Senate Bill 906 does that. I continue to believe that the best solution would be a total reversal of decision to close the Polk State Center. But at least this moratorium will provide additional time and impose important conditions that will protect the well-being of its residents.”

“Whatever the financial and philosophical motivations of state government, too little consideration has been given to the interests of families, workers, and the communities surrounding the affected institutions,” Senator Baker said. “This bill is intended to make sure Pennsylvania lives up to the legal and moral obligations to the residents of these centers, especially those for whom the centers are the only home they have really known.”

The bill will be considered in the House next.

Click here for the full article

broader, internecine left-wing dispute between “disability rights advocates” and those in “organized labor” who work at state institutions.

Luterman argues that the anguish displayed by those workers at the two facilities, apparently disturbed by the prospect of displacing hundreds of persons with severe disabilities from the care setting that they or their guardians have chosen, was a ruse deployed to save their jobs at the expense of residents who would be better served in the “community.”

What is clear, from this and other items that Luterman has written, is that she is not fond of settings that she deems “institutions” — which she defines broadly to include everything from large state facilities such as Polk and White Haven to six-person group homes. Luterman’s right to dislike such settings is undisputed, but her right to impose those preferences onto thousands of persons with disabilities and their families is very much in dispute. These individuals and their families have not elected Sara Luterman as their spokesperson, but she presumes that her preferences are theirs or, worse, doesn’t care what their preferences are at all. Jill Barker, the mother of a son with severe disabilities, noticed this phenomenon in 2015: “Disability self-advocates support the elimination of services and residential housing that they personally abhor,” in turn stripping “people with higher support needs who lack the ability to make decisions for themselves” of those services that they require.

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Jason didn’t last a month at a group home.

“He escaped into the neighbor’s yard and got into their swimming pool and almost drowned and they said there was nothing they could do to stop it,” Adrienne said.

They called the police and Jason ended up in a psychiatric hospital for four months, until someone told his parents about the Ebensburg Center.

“It was not possible to mainstream him. He has too many behavior issues. He can be a danger to himself and to others,” his mother added.

Born with cerebral palsy, 57-year-old Robyne Wheeler was taken to the Cresson Center at the age of twelve, when her mother had a medical emergency. It was to be a temporary arrangement.

“I believe that my mom realized that these facilities are great places,” her sister Renee said.

When Cresson Center closed, Robyne moved to the Altoona Center, and when it closed, she was sent to Ebensburg, where Renee visits her frequently.

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Verma’s comments also hinted that providers would have faced more scrutiny under the guidance. She stated that the Medicaid Value and Accountability Demonstration won’t compromise important beneficiary protections, but instead “will inject rigorous accountability for outcomes, provide significant and unprecedented flexibilities for program operation, and offer opportunities for shared savings that can be reinvested back into Medicaid.”

Read the full article here

“Santa Cares” events are held at malls and other shopping centers before they open for the day to allow visits with Santa before the crush of holiday shoppers arrive.

To participate, families are asked to reserve a time online in advance so that children with special needs can be called up individually and don’t have to wait in line.

Events will be held on Nov. 24, Dec. 1 and Dec. 8 at various locations across the country and are open to individuals of all ages.

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