Federal Law Now Requires States to GPS Track Disabled People Using Attendants

https://goo.gl/ZWRqWs

The United States government wants to track my movements. They want to know where I go, what I do, and who is with me every day. They’re setting up databases to track people like me right now. When they give the order, I’ll have to carry a special device, and I won’t be able to leave my home without notifying a government contractor.

I’m not a conspiracy theorist. I haven’t been arrested or committed a crime. A little-known provision of a 2016 law that goes into effect within the next two years threatens to steal the hard-won independence of millions of people with disabilities like me. It’s called electronic visit verification, and it’s even worse than it sounds.

I have cerebral palsy and use a power wheelchair, but I don’t let my disability limit me from living an active life. I live in my own home, I’m employed as Disability Editor here at The Mighty and regularly travel to conferences all over the United States speaking about disability issues. I’m also a travel blogger — that’s a job, not just a hobby — and I write about my experiences taking road trips across the country.

To live independently, I have personal care attendants (PCA) who assist me with getting out of bed, dressing, using the bathroom, cooking, house cleaning, shopping, driving and just about everything else. My PCA care costs about $4,000 per month, and no private insurance offers coverage for it. I have no choice but to be on Medicaid, and am in a self-directed Medicaid waiverprogram, in which people with disabilities control our own care. We hire our own personal care attendants, set the days and times they work, where they work and how they assist us.

People with disabilities have a constitutional right to live in our own homes and communities and make decisions about our lives, established in the Supreme Court ruling Olmstead v. LC. But now that right is under attack from an unexpected source. In 2016, Congress passed the 21st Century Cures Act. It was designed to streamline the approval of new medications and medical devices, but they slipped in another policy change many people didn’t know about. It’s called electronic visit verification (EVV). It requires all Medicaid funded personal care programs to implement a system for verifying a PCA’s identity and the date, time and location where personal care services were provided. If states fail to implement EVV by 2019, they lose up to 1 percent of Medicaid funding.


The Right to Parenthood

https://goo.gl/pS5cdW

The Oregon DHS’s demand that a low-IQ couple prove their ability to parent echoes a past we thought we’d left behind.

After a four-year fight, Oregon residents Amy Fabbrini and Eric Ziegler can finally begin raising their own children after a county judge ordered the Oregon Department of Human Services to return their sons to their care. Hunter, who is ten months old, was able to go home shortly before Christmas, and Christopher, age four, will be gradually phased out of the foster home he has lived for almost his entire life and into his parents’ home.

Jamie Gerlitz, Fabbrini’s attorney, spoke to The Oregonian after the ruling:

I think the system is broken. DHS has a lot of power and it’s really scary that it’s taken these people four years to be heard. I’m glad the case was successful, but it shouldn’t have been this hard.
The couple may have ultimately won their legal battle, but no judge can give them back the four years of parenting that they have missed. No one can make up for the fact that from the time that their children were just days old, the only time they have been allowed to spend with them is in a stranger’s home, with the indignity of constant “supervision” from watchful case workers waiting for them to do something wrong.


New federal accessibility requirements take effect

https://goo.gl/JVpWEq

A broader scope of government systems will be subject to comply with new standards under the Workforce Rehabilitation Act.

On Thursday, the federal government's new Section 508 standards took effect, requiring compliance from agencies, and any state or locality that accepts federal funding, to ensure their digital services are accessible to people with physical, sensory, or cognitive disabilities.

As part of the Federal Acquisition Regulation, the guidelines are aimed at helping seeing- and hearing-impaired users access information on government websites, apps and other digital media. The revised rules, which stem from a 2001 amendment of the Workforce Rehabilitation Act of 1973, include fewer compliance exemptions for hardware and software. This means a broader range of technologies and more states and localities are likely to be affected by the requirements.

The updates also include additional interoperability requirements for assistive technologies like braille displays and screen magnification software. In addition, the change asks organizations to use of the World Wide Web Consortium's Web Content Accessibility Guidelines (WCAG) 2.0, a resource with the latest technical and web design recommendations.

With more than $500 billion in federal spending going to companies, states and local jurisdictions, Beth Franssen, an accessibility expert at the software company Nexient, said the changes may take some by surprise if they are not prepared. 


Repeated Head Hits, Not Just Concussions, May Lead To A Type Of Chronic Brain Damage

This was well understood in the field, but difficult to prove. Kudos...

https://goo.gl/wxDyfB

A study published online Thursday in Brain, a journal of neurology, presents the strongest case yet that repetitive hits to the head that don't lead to concussions —meaning no loss of consciousness or other symptoms that can include headaches, dizziness, vision problems or confusion — cause CTE.

"We've had an inkling that subconcussive hits — the ones that don't [show] neurological signs and symptoms — may be associated with CTE," says Dr. Lee Goldstein, an associate professor of psychiatry at the Boston University School of Medicine and the lead investigator on the study. "We now have solid scientific evidence to say that is so."

And this evidence, he says, leaves researchers "terrifically concerned."

"The concussions we see on the ballfield or the battlefield or wherever — those people are going to get attention," Goldstein says, "because it's obvious they've had some sort of injury. We're really worried about the many more people who are getting hit and getting hurt — their brain is getting hurt — but are not getting help because we can't see the evidence on the outside that their brain is actually hurt. It's a silent injury."

Translating Goldstein's concern to the football field, Chris Nowinski, who heads the Concussion Legacy Foundation, says, "We see the hard hits all the time, where a guy pops up and smiles and [signals] a first down, and [we think], 'OK, that hit was fine.' But what this study says is: No, that hit probably wasn't fine, and that poor guy can't feel the damage that's happening in his brain right now."

Home Health Industry Dogged by Improvement Standard Myths

Why is it so difficult for providers to keep up with changes in standards and rules?  Someday, I'm going to do a post on how the sheer persistence of habit produces rampant discrimination...

https://goo.gl/pi5Ap4

Some home health care providers believe that chronically ill patients who stand no chance of getting better don’t qualify for Medicare coverage—but they’re mistaken.

A 2013 settlement in the court case Jimmo v. Sebelius put that “improvement standard” to rest. As set by that case, Medicare does cover skilled nursing and therapy services, including in-home care, to maintain a patient’s current condition or prevent a slow decline. Simply put, a patient’s improvement is not a condition for Medicare coverage.

Still, some home health agencies wrongfully deny Medicare-covered services to chronically ill people specifically because their conditions won’t improve, according to a Jan. 17 report from NPR and Kaiser Health News. One such case is that of Colin Campbell, a 58-year-old Los Angeles resident with Lou Gehrig’s disease who spends nearly $4,000 on home health care per month.

Although Campbell has Medicare coverage, 14 home health care agencies told him they couldn’t treat him, according to the report. Some agencies told him Medicare would only cover rehabilitation, while others said Medicare didn’t cover home health care at all. They’re both wrong.