The Center for Persons with Disabilities at Utah State University

Eat turkey, help DSL

November 20, 2015 by Sue Reeves

Image of turkeyThis Thanksgiving we all have a lot to be thankful for. For some members of our community, this includes being able to participate in our Developmental Skills Lab (DSL). DSL provides safe, stimulating and fun care and activities for adults with disabilities, as well as respite for their families and those who take care of them. Now you have an opportunity to help make sure this service is available to someone who needs it. Please join us this Friday, November 20 for a Thanksgiving turkey feast to support ongoing care for one of our DSL participants. Leave your boring old sack lunch at home this Friday and for $10 we will provide you a festive feast of turkey and all the fixings, brought to you by Lee’s Market Place. Reserve your spot by purchasing your lunch in advance at the CPD main office, DSL main office, or simply e-mail Shane Johnson that you are interested and he will stop by your desk for payment. This is open to everyone, so feel free to invite friends and family to join you. We hope to see you there!

When: Friday, November 20, 12:00pm – 1:00 pm

Where: HSRC 105

How: Just bring $10, cash, or check made out to the “CPD Developmental Skills Lab” to the CPD front office, DSL office, or to the lunch on Friday.

What’s Cooking: Roast turkey, mashed potatoes and gravy, rolls and veggies.


Invisible disabilities are still difficult

November 19, 2015 by Sue Reeves

Image of young woman.Note from Gordon: For those of you who know me you clearly understand my disability is not invisible. I am a C-4 quadriplegic and use a power wheelchair for mobility. My power wheelchair actually liberates me and allows me to go pretty much wherever I want to go. On occasion I will run into a facility that is not accessible for me and my wheelchair. But it does not happen nearly as often as it
once did. In our local community I know where I can go and where I am welcome
and that’s where I spend my time and money. But enough about me and my physical disability. Which is clearly not Invisible.

The blog below is written by a young women with an invisible disability. This is a very informative perspective from her and how she is treated with her invisible disability. I will let you read it and come to your own conclusions. But from my perspective people with an invisible disability have a harder time qualifying or receiving services then an individual like myself who clearly has a visible disability.

By Guest Blogger Beth Schill
Ahhh… Invisibility. It’s one of those superpowers we dream about as kids and, let’s face it, as adults too. How often do we wish we could be a fly on the wall, to listen in on conversations, to see what people are like when nobody’s looking? “To be invisible,” we think, “now that would be cool!”

Well, for those of us with invisible disabilities, being invisible is not always as great as one may think. On the one hand, no one can tell if we have a disability just by looking at us. And for those who face visible disabilities, I can only imagine how difficult that must be. Yet for those faced with an invisible disability, it can be difficult for us in school or the workplace to not feel understood as we deal with our own health issues. Many people see us as able-bodied adults, and wonder why we can’t work an extra few hours, why we take so long doing problems or taking an exam or why we can’t pull our own weight. In short, it can be a very confusing and lonely experience.

According to the American’s with Disabilities Act, enacted in 1990, a disability qualifies as “a person who has a physical or mental impairment that substantially limits major life activities; has a record of such an impairment; or is regarded as having such an impairment.” Some of the major life activities include:

Caring for one’s self
Performing manual tasks

In the case of invisible disabilities, some of these major activities may be compromised occasionally, or intermittently depending on the nature of the disability. Thus, the distinction of having, “a record of such impairment,” is key. In this case, the law helps people who, while they may not be impaired at a given moment, their condition may have, or could result in their inability to perform major life activities. These may include learning disabilities, mental disabilities, and whole slew of chronic conditions that can strike anyone, anywhere, at any time.

For me, having epilepsy qualifies as a disability under the ADA. Although most days I look and am able to act without an impairment, when I have a seizure major life activities are definitely in jeopardy, as I lose consciousness, stop breathing and lose control of my body. Even after my seizure ends, I physically look fine, though my mind is in a haze and I have difficulty with memory, vocabulary or other cognitive symptoms – often impacting my ability to learn and work. It wasn’t until my last seizure I realized how frustrating it was. During my most recent seizure I fell on a hard, tiled floor. After my ER visit my arm was in a sling, my face was bruised and I had a nice batch of stitches. And in an odd way, I was glad because for once I felt like my physical appearance mirrored just how battered my brain felt.

The thing is, it shouldn’t have to be this way – to be glad that one’s invisible disability is visible in order to get the help one needs. So what can be done then? What do we do when we are faced with the “gift” of invisibility? How can we as students or workers get the help we need without putting ourselves at risk of discrimination? I believe the only way is to be more public about our invisible disabilities, and to take steps on educating the public exactly what that means, and how others can help. Below are a few steps I have found to be helpful in my own journey:

Tell your employer about your disability

In my own life, I have had to deal with the question of whether or not to tell my employers about my epilepsy. When I was diagnosed I was working at a major consulting firm, and after a grueling few months of burning the candle at both ends, I had a seizure. I was told by my doctor that there was no way I could continue the hours I had without putting myself at risk for more seizures. But I was loathe to seem like I couldn’t do my job like everyone else. So what did I do? I used every resource that I had in hand, including a few friends who work within the disability world. They helped me recognize that epilepsy was covered by the ADA and that I had the right to “reasonable accommodations” to do my job.

In going in to talk to my bosses and my HR representative, I requested “reasonable accommodations” in the form of a regular (i.e. 40 hour) workweek and minimal travel. And due to the protections afforded by the ADA, my work was more than happy to comply. I also decided to tell the people I worked with, so that they knew how to help me if I had a seizure. But before I did any of this, I had to do my homework, understand the law, understand my job and ultimately become my own advocate.

Manage your life to have the balance you need and recognize your very real (though occasionally frustrating) limitations

At my job, I mentioned that they were able to provide me reasonable accommodations in the form of reasonable hours, limited travel and so on. However, as I moved on and up in the firm, more came to be expected of me. The firm kept waiting for me to get “back to normal” and I was having a more difficult time explaining why I could not buy into the corporate culture. Ultimately, I recognized that while I could do my job well, given my very real limitations, I could not be as successful as I, or the firm, wanted me to be in the future. I decided to leave my job for one that was still challenging, but not nearly as stressful. It was one of the toughest choices I made to leave a lucrative career… but it was worth it!

Thus, finding the right job that will work with you, and not expect you to “return to normal,” is hard to find, but very much worthwhile. The world rewards workaholics, super moms and super dads and people who “stand up in the face of adversity.” And I am one of those type-A people who want to be the best. But I’ve had to learn to respect my body, and not just respect it, but embrace it. And though it is not easy to roll against the tide, I feel much more grounded and content than many people I meet.

Educating the broader public about your disability and how to help accomodate

And that brings me to my last point – that having good work-life balance necessary to manage invisible disabilities, and knowing how to *gasp* ask for help, makes us superheroes of a different kind. Those of us struggling with invisible disabilities (really any kind of disability) can do a lot to promote dialogue about what it means to be healthy. Whether we have epilepsy, MS, mental disorders, a learning disability, we all have something valuable to teach in a world that is becoming increasingly fixated on “how much a person is worth.” We have innate value in understanding ourselves, our minds, our bodies, and can teach others how to respect not just us, but themselves as well. But it takes courage. For me, it means no work email after hours, not being able to be as social after work as I would like, getting a solid 8 hours of sleep, eating well and giving myself plenty of down time to decompress. Not courageous in a big way, but I’d like to think in my own way I’m helping to change the conversation

In truth, being invisible isn’t really all it’s cracked up to be, and to that end, I am not afraid to stand up for myself and what I believe. There are many options out there, but you have to be willing to be patient with yourself and others, understand the law and what it does, or does not cover, as well as being willing to be courageous and stand up for what you believe. And part of me telling my story, I hope, helps others to feel comfortable telling theirs.

Beth is a Research Manager at the Partnership for Public Service. She was diagnosed with epilepsy in 2008, and has spent much time counteracting today’s workaholic culture to be better accommodating to people with disabilities. Find her @beth_schill.

This blog first appeared at

Success in Social Impact Bond Aids Schoolchildren

November 12, 2015 by Sue Reeves

Note: Contributed by Mark Innocenti, director of the CPD’s Research and Evaluation Division. Innocenti said the data that is being discussed in this article was collected and analyzed by researchers at USU.

Stock market indexFinancial results at Goldman Sachs are going to look a little bit better this quarter because of the educational success of 100 or so kindergarten pupils in Utah.

The students were part of a relatively new financial experiment in which Goldman put
up money to pay preschool costs for students who had been expected to need special education services.

When the students were tested this year — after a year in preschool — and found not to need extra help, the State of Utah paid Goldman most of the money it would have spent on special education for the children.

The payment represented the first time a so-called social impact bond paid off for investors in the United States.

The idea of social impact bonds is still very new. The first one was started in England in 2010; Goldman started the first in the United States in 2012.

The bonds are already being talked about as one of the most promising ideas to come out of finance recently — providing a new way to fund social programs in an era of government budget cuts.

But the effectiveness of the bonds has been unclear. Only one of the British efforts has returned results so far. (It was a success.) Goldman’s first social impact bond to publish outcomes — a program that attempted to reduce recidivism among inmates on Rikers Island in New York — failed this summer.

For people studying social impact investing, the results in Utah are exciting — even more so given the children’s success. Among the 110 students who had been expected to need special education had they not attended preschool, only one actually required it this year.

“We’re in the beta testing stage of this whole endeavor, and now we have one example where the concept worked as intended in terms of delivering the outcomes and executing the contract,” said John Roman, a senior fellow at the Urban Institute who is researching social impact bonds.

Gov. Gary Herbert of Utah and Goldman’s chief executive, Lloyd C. Blankfein, lauded the outcome on Wednesday as a victory for public-private partnerships. It is also a public relations victory for Goldman, which has been trying to reform its reputation as an institution focused solely on the bottom line.

But these are still early days for social impact bonds. The experiment in Utah has only operated for one year and involved 110 schoolchildren. It and other social investments Goldman has made could end up more like the discontinued Rikers program. Even if that happened, the sums involved — in the millions of dollars — are tiny for the megabank.

But Goldman has structured its more recent social impact bonds more like the one in Utah, which expanded on existing programs that had a successful track record. The Rikers program, by contrast, paid for a service that had never been tried before in the prison.

“The tool of ‘pay for success’ is much better suited to expanding an existing program,” Andrea Phillips, vice president of Goldman’s urban investment group, said in an interview on Wednesday. “That is something we’ve already learned through this.”

The $4.6 million put up by Goldman — and the $2.4 million invested by the Pritzker Family Foundation — went toward expanding an existing preschool program for poor children in Salt Lake County.

The program had already been shown to decrease the need for special education, but it had not been able to expand to meet all of the demand.

The Goldman money — which is more of a loan than a bond — allowed another 595 3- and 4-year-olds to attend preschool last year, in addition to the 2,400 or so other children who were already enrolled. Of those new students, tests indicated that without preschool, 110 were likely to need special education.

This year, teachers determined that 109 of those pupils did not need special services. For each one of them, Goldman and its partner got about $2,500, and will receive that each year, through the six grade, that the students avoid special education, with the amount decreasing in the years after that.

The State of Utah, and some local private charities, are still paying 95 percent of what it would have cost for the special education. But Mr. Roman, at the Urban Institute, said the state would reap significant other savings if the students continued to avoid special education, which is generally associated with higher levels of truancy, juvenile crime and other problems.

The state and county were also pushed to quantify the results of their services, something governments are frequently able to avoid.

Mr. Roman said that when he started looking at social impact bonds, he assumed they would need to get most of their money from philanthropists, given the risk-return profile of the investment. While social impact bonds pay out a relatively healthy interest rate when they succeed — between 5 and 7 percent a year in the Utah program — the investors lose all the money when they fail.

The investments, though, have drawn a remarkable amount of interest from institutions and wealthy individuals eager to put their money into something they can feel good about. After the Utah program began, Goldman raised $150 million from clients for a social impact fund, and a number of other social impact bonds are moving ahead with backing from other financial institutions.

There is still a lively debate about whether these sorts of investments will come with unintended consequences, perhaps tilting funding toward programs that can provide easily quantifiable results and making it easier for governments to cut budgets.

But for now, there is a bottleneck in expanding this sort of investing. It is not with investors; instead, it is the time-consuming difficulty of structuring deals like the one in Utah.

Mr. Roman is looking at ways to make the process easier — and he imagines it will happen as the idea catches on, especially if there are more results like those in Utah.

“The goal of this whole thing was to keep kids out of special ed, and on that metric it seems to have done so spectacularly,” he said.

This article first appeared in the New York Times online edition on 10/7/15.


Hammond named interim IDT director

November 10, 2015 by Sue Reeves

Image of Marilyn Hammond

Marilyn Hammond

Marilyn Hammond has been named the interim director of the Interdisciplinary Training Division at Utah State University’s Center for Persons with Disabilities. She replaces Judith Holt, who is currently serving as the CPD’s interim director. The appointment became official on Oct. 1

“I have big shoes to fill,” Hammond said. “Judith is an amazing director. She has done a great job with the division. We have an excellent staff and great programs. This new role will be challenging, but exciting.”

Hammond’s new duties will include managing multiple projects, seeking new funding, collaborating with other departments and colleges, and keeping current programs and services running effectively. In addition, the Utah Assistive Technology Program will now be located in the IDT division. Hammond is the current director of the Utah Assistive Technology Foundation, which provides low-interest financing for individuals in need of AT.

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CAC Corner: Durable Power of Attorney

November 5, 2015 by Sue Reeves

By Mary Kava

A Durable Power of Attorney, which covers medical and financial matters, is a legal document that gives your designated representative the “power to act in your place” should you
become mentally incapacitated and/or unable to handle your affairs. It can be prepared as one document covering medical
and financial matters or separate documents, one for medical
and one for financial.

When a person becomes disabled or has an illness that renders them unable to handle their affairs or make decisions for themselves, the decision making falls can fall on others. Having someone designated as your representative and having the right paperwork authorizing them to represent you is extremely important.

In May, my husband had a stroke, which has been not only life changing but also an educational experience in the fact that everyone should be prepared for such changes.

His stroke started with symptoms of the flu. He had none of the symptoms they tell you to watch for. He was weak and thinking he had become dehydrated, I took him to the ER. There they discovered he had a bleeding stroke, which required transportation to another hospital. A nurse asked my husband if he had medical power of attorney authorizing me to make medical decisions for him should he be unable to make them himself. We had done “advanced directives” but this was something we had not done.  He was able to talk and understand most of what was happening but the nurse and doctor advised that medication they were going to give him would make him somewhat incoherent or unable understand necessary treatment. The nurse brought paperwork for my husband to sign giving me permission to act on his behalf in making any medical decisions explaining that it may be needed at the hospital where he was being transferred. Once at the new hospital it did help in that I was able to give them permission to treat him because he was unable to. It took a lot of worry off me because there were no delays in his treatment. Medical matters were easily taken care of with this simple piece of paper. I as able to not only deal with doctors on my husband’s behalf but also with the insurance company.

Thinking that all was well, I discovered that there were financial matters that had to be dealt with. While the power of attorney covered medical matters, it did not cover financial matters. My husband was in intensive care for almost two weeks, unable to comprehend anything. When I went to pay bills, I discovered that companies/banks would not talk to me even though my name was on an account. When I provided them with the Medical power of attorney, I was told that what I really needed was a “durable power of attorney that covered both medical and financial. Fortunately, I did have contact with some companies that assisted me with basic information I needed, but others refused to talk to me at all. Through a person at the hospital, I was able to obtain a Durable Power of Attorney and when my husband was able to comprehend what he was signing, it was signed. I also had one prepared for myself so that if something happened to me where I was unable to handle my own affairs, the person I assigned as my representative would have no problems dealing with medical or financial issues that might come up.

It is important that as you choose a representative(s), you get their permission and explain what you want them to do in regards to your financial or medical or other matters. It is also important that you should check the regulations/rules regarding durable power of attorneys in your state and/or seek legal advice. Durable power of attorney is also not permanent and can be canceled or changed anytime you desire.

Everyone should make sure that a durable power of attorney designating someone to make decisions and/or act on their behalf should they become incapacitate. It has made taking care of medical and financial matter since my husband’s stroke much easier and thus relieving a lot of stress. Providing copies to insurance companies, employers, financial institutions and medical facilities has made it faster and simpler when communication with them is needed. It has also allowed me to avoid unnecessary stress on my husband during the healing process when cognitive issues still occurring.

A durable power of attorney is a simple matter to prepare or have prepared. It is an important document that can help not only your representative/caregiver when you are incapacitate, but also help ensure that your affairs are handled as you wish them to be taken care of.