The families of people with intellectual or developmental disabilities know the difficulties of navigating state bureaucracies in search of help. They’re often aren’t aware there is help, but now they have a state-appointed ombudsman to work on their behalf. Correspondent Briana Vannozzi sat down with Paul Aronsohn to discuss the new role and what he hopes to accomplish.
Vannozzi: Advocates, family members, caregivers, even, are going to learn about this role and are going to say, ‘Well, it’s about time.’
Aronsohn: Absolutely. This has been long overdue. You know, this population we’re talking about, people with intellectual and developmental disabilities and their families, it’s so hard to navigate the system as it exists. So it’s really important to have an advocate to have help out there to find their way.
Vannozzi: So what will you do as ombudsman? What does the role entail for the state?
Aronsohn: Well, the main purpose is to work with individuals with intellectual and developmental disabilities and their families to help them get the services and supports they need and deserve. So, that means a few things. That means helping them navigate the system, which can be a little bit confusing and overwhelming, to find those programs that they need. It can be to work with them to look at ways to improve the system — better communication, different programs, different policies. But, ultimately it’s about making sure that the voice of the individual and their families is heard, and it’s heard in a meaningful way, and that they’re involved in the decisions that are affecting them.
Vannozzi: You’ve had already a long work life in government, public sector, advocating on this issue. You have three siblings who have informed you about this work. Tell me about that.
Aronsohn: Yeah, so, all three of my siblings have had a mix of disabilities and medical conditions. One of my sisters, Patty, actually passed away last year. It’s really through her experience and through her life that I learned and became impassioned about disability issues.
Vannozzi: So how does that inform your work? What do you plan to focus on?
Aronsohn: Well, it informs my work because anyone who comes from a family with disability, we’ve had sort of a front-row seat so we see the struggles, the challenges, that are faced by families, so it informs your understanding better. And so you take that understanding, you take that passion, and you bring it to every situation, you know, every family that comes to us.
Vannozzi: I can tell you, I mean, I’ve done extensive reporting on the issues facing families, individuals with intellectual and developmental disabilities. What I hear from them is health care and mental health care is fractured. Since the Christie administration moved the Division of Mental Health Services to the Department of Health, at least anecdotally and through many stories that I told through them, the care is more difficult to access. Why is that and what is the rule of the ombudsman going to do to help that?
Aronsohn: Well, yeah, it is. The good news is that New Jersey provides a lot of supports and programs for folks with disabilities. The bad news is it’s so difficult to navigate.
Vannozzi: Why is it so difficult to navigate?
Aronsohn: I think it’s a combination of reasons. I think there’s so many different programs, so it can become confusing, that have different eligibility and different applications. I think there can be an improvement in terms of the way that we communicate with folks. One of these things I’ve noticed is, that again, there are these great programs in Trenton, but the folks that live in the communities throughout New Jersey aren’t aware of them. So there’s a disconnect somewhere and that’s where we aim to sort of fix. We hope to bridge that disconnect and make sure that people understand what’s available to them.
Vannozzi: What are some of the programs? NJ Able is one of the newest ones. What is that? Tell us what that is and what it will do for folks.
Aronsohn: In New Jersey, Able is based on a federal program and that allows folks to save their money. So, it allows them to put their money away, just like anyone else with or without a disability. But there is a whole slew of programs that are available — residential programs, day programs. There’s a lot of support that’s there. The key is just to help people access it.
Vannozzi: Is there enough support for the amount of individuals with these disabilities? It’s something like 22,000 in New Jersey. Is the state offering enough to reach all of the state? Not just those cities where most of the population is living.
Aronsohn: Sure. I can’t say whether we have enough right now to reach all of them, and that’s something that we need to work on. We do have a lot of programs and a lot of services, but there are gaps. I mean, for instance, for those that are called dual diagnosis, those with intellectual and developmental disabilities, as well as mental health challenges, there’s a lot of work that needs to be done in that space for those individuals. There’s a lot of work that needs to be done, I think, to sort of fill the gap between when a child with IDD becomes an adult with intellectual development [disability].
Vannozzi: That’s a huge issue. Once they age out, as we say, once they’re 21 and older, there’s so many resources in place during that age group. But once they become an adult, it gets really difficult.
Aronsohn: It becomes difficult because, I think, there’s just a lack of understanding. I think there’s an opportunity here to educate folks. Because, right, we have the children’s system of care, which provides services for kids up to 21. And then the Division of Developmental Disabilities takes over when they’re 21. There are a lot of programs and supports on both sides of that 21 age mark, but a lot of people don’t know about it. And so what we need to do is reach down into the communities, educate families better, early, before they turn 21 to make sure they are aware what they need to do to access those programs, to access those services.
Vannozzi: Part of your charter is that you’ll be issuing an annual report to the governor, to the Legislature. Quickly, if there’s a number one issue you’re going to advocate for, or to recommend, what will that be?
Aronsohn: A number one issue? Well, I’ve been doing this for ten weeks, so I’ve got a bunch of issues that I’ve been kicking around. I mean, one of them is this transition from child to an adult because, again, we know that every child with an intellectual or developmental disability is going to be an adult with an intellectual developmental disability. We know that transition is going to occur. And so to me, that is a low-hanging fruit that we need to sort of step up and fix to make it so that it is a seamless transition for those families.
One of the world’s largest athletic brands is expanding its lineup of shoes specially designed for people with disabilities.
Nike said this week that it will add a new product to its FlyEase collection — which features sneakers that include special accessibility features — this summer.
The Nike Air Zoom Pegasus 35 FlyEase was developed in consultation with Justin Gallegos, a member of the University of Oregon track club who has cerebral palsy, the company said.
Nike designers indicated that they worked with Gallegos as he trained for his first half marathon, studying his unique gait and stride and listening to his needs in order to make a shoe that would be easy to get on and off, be durable in the forefoot, offer good cushioning and provide a stable platform.
The result is a sneaker that features a zipper-and-strap enclosure so that Gallegos can easily slip in and out of them and does not need to worry about laces becoming undone mid-race.
“I want people to know that this technology exists, and regardless of what your sport is, the Nike FlyEase technology can help you; it can change your quality of life in incredible ways,” said Gallegos who clocked a time of two hours and three minutes in the race.
Nike first unveiledits FlyEase concept in 2015 after hearing from a teen with cerebral palsy who wanted a shoe he could take on and off independently. Since then, the athletic-wear giant has grown the line to include sneakers for adults and kids.
The new FlyEase shoe will be available July 1 on Nike’s website.
Matt King, an engineer at Facebook.Source: Facebook
A Facebook team led by a blind engineer may hold the key to one of the most pressing problems on the internet: Screening images and videos for inappropriate content.
“More than 2 billion photos are shared across Facebook every single day,” Facebook engineer Matt King said. “That’s a situation where a machine-based solution adds a lot more value than a human-based solution ever could.”
King’s passion stems in part from his own challenges of being a blind engineer.
He was born with a degenerative eye disease called retinitis pigmentosa. As a child King could see fine during the day, but could not see anything at night. Soon that progressed to only being able to read with a bright light, then with a magnification system. He used a closed circuit TV magnification system to finish his degree.
By the time he went to work at IBM as an electrical engineer in 1989, he had lost all his vision. King started volunteering with IBM’s accessibility projects, working on a screen reader to help visually impaired people “see” what is on their screens either through audio cues or a braille device. IBM eventually developed the first screen reader for a graphical interface which worked with its operating system OS/2.
One of the lead researchers noticed King was passionate about the project, so he asked him to switch to the accessibility team full time in 1998. He eventually caught the eye of Facebook, who hired him from IBM in 2015.
“What I was doing was complaining too much,” King said. “I just wanted things to be better.”
King is used to making the world adapt to him. The avid cyclist competed in the Atlanta, Sydney, and Athens Paralympic games, and plays the piano. On the request of his wife and two children, his family remained in Bend, Oregon after Facebook hired him. To get to Facebook’s Menlo Park office, King hitches a ride with friend with a pilot’s license who works at Google.
Matt King at the 1996 Paralympics in Atlanta, Georgia.
King’s IBM work revolved around creating the Accessible Rich Internet Applications standards, what he called “the plumbing for accessibility on the Web.”
Now he works on features to help people with disabilities use Facebook, like adding captions on videos or coming up with ways to navigate the site using only audio cues.
“Anybody who has any kind of disability can benefit from Facebook,” King said. “They can develop beneficial connections and understand their disability doesn’t have to define them, to limit them.”
One of his main projects is “automated alt-text,” which describes audibly what is in Facebook images.
When automated alt-text was launched in April 2016, it only available for five languages on the iOS app, and was only able to describe 100 basic concepts like whether something was indoors or outdoors, what nouns were in the picture, and some basic adjectives like smiling.
Today it is available in over 29 languages on Facebook on the web, iOS and Android. It also has a couple hundred concepts in its repertoire, including over a dozen more complex activities like sitting, standing, walking, playing a musical instrument or dancing.
“The things people post most frequently kind of has a limited vocabulary associated with it,” King said. “It makes it possible for us to have one of those situations where if you can tackle 20 percent of the solution, it tackles 80 percent of the problem. It’s getting that last 20 percent which is a lot of work, but we’re getting there.”
Using artificial intelligence to see
Though automatic alt-text is configured for blind and low vision users, solving for image recognition issues with artificial intelligence can benefit everyone.
In December 2017, Facebook pushed an automatic alt-text update that used facial recognition to help visually impaired people find out who is in photos. That technology can also help all users find photos of themselves they were not tagged in, and identify fraudsters who use a person’s photo as their profile picture without permission.
The issue arises because it’s not easy for computer programs to understand context, said Integral Ad Science (IAS) chief product officer David Hahn. Software has a hard time telling if an image of a swastika is on a Wikipedia page about the topic, part of a story on Nazism or on a flag being marched around in a protest, he said. It gets even more complicated when advertisers and their needs are involved: they amy want to advertise against a movie trailer that contains violence but not next to real-world violence from a protest.
Most image recognition tech relies on terms called metadata, which are tagged to the image called, metadata and other clues like text or audio on the page, Hahn said. Video is typically analyzed by taking a random sample of still images from the clip and examining them to determine if it’s the video is okay overall.
“There are varying degrees of accuracy and sophistication,” Hahn said. It takes a lot of different treatments on images or text. There’s not one source or one perspective that should be taken as gospel.”
Facebook’s automated alt-text still relies on a staff of people telling the technology what certain images are, Facebook’s King explained. But the machine’s algorithms and recall rate — the frequency with which images are positively identified — is improving. And as it begins to understand more about context, it’s getting closer to a day where it will need little to no human help.
Carlie Bower sits in one of the individual rooms in a Mother’s Room at IBM. Nicole Villalpando/American-Statesman
Now, IBM is reimbursing employees up to $50,000 to cover services for each child with mental, physical or developmental disabilities. This $50,000 is in addition to what insurance already might cover.
This is huge. Having a child with different abilities is incredibly expensive. It can financially ruin families. Even with amazing insurance, parents are still spending tens of thousands of dollars a year in out-of-pocket expenses on co-pays, services not covered by insurance, equipment, parking, medications and more.
IBM also expanded many of its other parent-friendly programs, including:
Increased paid parental leave to up to 20 weeks (from 14 weeks);
Doubled paid parental leave for IBM dads, partners and adoptive parents to 12 weeks.
Parents can choose to take parental leave any time during the first year after the birth or adoption;
Reimburse up to $20,000 for eligible adoption or surrogacy expenses including medical costs associated with surrogate birth mothers.
IBM also offers expectant mother parking spots, child care and after-school center discounts, child care centers at its locations, and flexible scheduling for parents who need to pick children up after school, go to children’s events or appointments.
How is your company helping you be a better parent?