Fall 2013 Newsletter
Welcome to the Disability Law Center’s Fall 2013 Newsletter. With the end of this quarter, we welcome a new Fiscal Year and 35 Years of Service for the Disability Law Center!
During that time, we have strived to help the most underserved and needy members of the population in Utah. In the next 35 years we hope to do more of the same, while continuing to grow in our work and experience to better serve future populations and individuals as laws change, new conditions and disabilities arise, and we continue to grow as an agency. We truly hope your experience with our organization has been a great one and you will consider joining us for the 2013 Community Justice Awards. This event will feature music, food, an award ceremony, and the chance to support the disability community in our state.
In this issue:
- The Sibling Project
- Case Study – JH’s Story
- Ask the Advocate
- bLAWg – Law Enforcement and Disability Rights
- Public Policy – Health Insurance Marketplace
- Book Review – “Wonder”
Please enjoy this edition and let us know what you would like to see in the next one.
The Sibling Project
By: Laura Boswell, DLC Staff Attorney
An exciting movement is afoot in the Salt Lake Valley. There is momentum to start a Utah chapter of the Adult Siblings Leadership Network (“SLN”). The SLN focuses on bringing together the adult siblings of people with intellectual disabilities. The hope is that such an organization can tap in to the potential and resources that this group might represent, and provide a way for disability advocates to better understand the needs of adult siblings and families of individuals with intellectual disabilities. Efforts are currently focused on finding adult siblings who are interested in participating in this process. In order to access the unique experiences shared by siblings, it is important to have input from a wide array of siblings on what the newly formed Utah chapter’s focus should be. While the project is currently in its infancy in Utah, the national network has been in existence since 2007. A notable topic at the last national conference was the passing of care responsibilities from parents to adult siblings. As parents and guardians age, many have become unable to provide the same care for adult children with intellectual disabilities as they did previously. This has resulted in many siblings taking on a more active, if not sole, role in caring for their adult sibling. It is possible that this shift in responsibility is facilitated not only by the aging of parents, but also by the unique relationship that is formed between many siblings of people with disabilities. For additional information about this organization, please visit www.siblingleadership.org. If you or someone you know may want to be a part of this exciting effort, please contact:
Utah Developmental Disabilities Council
155 S 300 W, Suite 100
Salt Lake City, Utah 84101
FINDINGS FROM EASTER SEALS SIBLINGS STUDY (2012)
The Easter Seals Siblings Study (2012) is one of the first studies identifying the experiences of adults who have siblings with disabilities. 351 adults who have a sibling with a developmental, intellectual, or physical disability were surveyed, as well as 1,392 adults who have a sibling without a disability. The study found:
- 60% of people who have a sibling with a disability said they were involved in their sibling’s day-to-day life, while less than 30% of the general public said the same.
- 23% of people who have a sibling with a disability said they were their sibling’s primary care provider, and nearly one-third expected to become their siblings’ primary caregiver in the future.
- 75% of primary caregivers said caring for their sibling was a full-time job, and 30% said they did not receive emotional, physical, or financial support from family or friends.
- Nearly 80% of people who have a sibling with a disability said they have a close relationship with their sibling, as opposed to 60% of the general public.
- Approximately 60% said having a sibling with a disability has had a positive impact on their lives.
- Over one-third of people who have a sibling with a disability said they provide their brother or sister with financial support.
- 60% of people who have a sibling with a disability said they wanted to know more about how to plan for their sibling’s care and finances.
Case Study – J.H’s Story
By: Lauralee Gillespie, DLC Staff Attorney
- Names have been changed to protect anonymity.
Using a wheelchair provides greater access and greater limitations to a student in an elementary school setting. Recess games and friendships on the playground are met with boundaries that leave a student feeling unable to socially relate and make friends.
T.J. was a student in a wheelchair that needed support socially in interactions with his classmates and physically in stretching and ambulation. T.J.’s Individualized Education Program (IEP) had specific goals in all of these areas, but the school was not consistently working on any of the goals.
T.J. was not having directed recess activities with peers, as outlined in the IEP, which allowed him to learn from appropriate social play and interaction. He was not doing regular stretching exercises and being moved in and out of his wheelchair. T.J.’s mother advocated for him and documented the challenges throughout the school year.
The Disability Law Center looked at the detailed notes the mother provided and found that T.J. was not only denied his rights to special education services, but that he also was being denied basic accommodations under the Americans with Disabilities Act (ADA). The barriers were an inaccessible door to the school and an automatic door button that was not functional. He also needed accommodations with transportation. The school bus held to a rigid time schedule that did not accommodate the needs of his disability.
The Disability Law Center joined the parents at an IEP meeting where ADA accommodations were discussed and later remedied. IEP issues were also discussed and implemented more appropriately. The Disability Law Center filed a complaint on behalf of the student and he was awarded some compensatory service time. The teachers at his school received training on IEP implementation.
Special education under the Individuals with Disabilities Education Act (IDEA) and accommodations under the ADA are both protected rights for students with disabilities that qualify. Parents of students with disabilities are the student’s greatest advocates. Documenting concerns and talking with school team members are the keys to getting the services a student is entitled to.
In T.J.’s case the parental and DLC advocacy provided T.J. with the physical and social services he needed and the compensation for services he missed and was entitled to. It also alerted the school to the need for training and understanding of IEPs as well as ADA accommodations in the school setting.
Ask the Advocate
By: Vard McGuire, DLC Advocate
I’ve been looking for a new apartment, but I’m having a hard time finding a place to live with my assistance animal. Most landlords tell me they don’t accept “pets” or else try to charge pet fees that I can’t afford, is there anything I can do?
Yes there is! The Fair Housing Act was created to protect people from being treated differently in housing situations based on race, color, sex, national origin, religion, family status or disability. Under the Fair Housing Act, people with disabilities are also given additional protections. They include the right to ask for reasonable modifications and reasonable accommodations. To be eligible for these you must be a person with a disability and it must be necessary for you to use and enjoy your dwelling
A modification is a physical or structural change to an apartment or facility. Examples of modification requests might include asking for ramps, grab bars, doorbells with a strobe light or lowering a peep hole on a front door. If you require a modification, a landlord must grant your request, however, you will be required to pay for the modification and may have to return your unit to its original condition when you move out.
An accommodation is an exception to a rule or policy a landlord might have, including exceptions to pet policies for people with assistance animals. If you have an assistance animal, you have the right to ask for an exception to a “no-pets” policy. A landlord also cannot charge you any additional deposit or “pet” fees for your animal and cannot ask about the nature of your disability (“What’s wrong with you?”). However, a landlord can ask you to provide verification that you have a disability and that you need the animal to use and enjoy your apartment. This verification can come from a doctor, therapist or other professional who is familiar with your situation.
A landlord can also require that your animal is licensed and is up to date on its shots. Once the accommodation for your animal is granted, you will also be required to be responsible for it. You must clean up after your animal, make sure it is under your control at all times, and that it does not pose a threat to the health or safety of others.
If you wish to make an accommodation or modification request, you can do it at anytime or have someone do it on your behalf. The request can be made verbally or in writing, but we suggest making it in writing so there is documentation of the request.
Remember, communication is key in requesting an accommodation for your assistance animal. If you have additional questions about how to make an accommodation request or would like assistance in the process, please contact us at the Disability Law Center.
bLAWg – Law Enforcement and Disability Rights
By: Crystal Flynn, DLC Staff Attorney
Interactions with a police officer can be a very stressful experience. These experiences can be even more stressful if the person involved has a disability, that affects the person’s ability to physically and emotionally communicate with police officers, as well as the officer’s ability to understand and respond to the situation at hand.
Often times it is easier for a police officer to tell if someone has a physical characteristic, such as deafness of blindness, which can be an initial barrier to communication and for that officer to take steps to communicate effectively or to contact an interpreter, if necessary. What is usually more challenging is when the person involved is experiencing a mental health crisis and the police officer is not trained to properly identify or respond to the crisis.
It is important to understand that a person with a disability has a Constitutional right to be informed of what is going on during their interaction with the police officer, as well as know their rights if they are being arrested. As a result, the police officer is required by the Americans with Disabilities Act (ADA) to accommodate the person and take necessary action to make sure the person has the same opportunity to communicate and receive information as a person without a disability. However, when a person has a disability or is experiencing a mental health crisis, the person may not be able to communicate effectively with the police officer and the officer may misinterpret the behavior. For example, a person who is deaf may not respond to a police officer’s verbal request for him or her to stop. Another example may be that a person with a diabetic condition or neurological disorder may appear intoxicated even though he or she has not had anything to drink. Likewise, a person experiencing a mental health crisis may exhibit behaviors that appear disruptive or uncooperative. If a police officer cannot recognize these symptoms, the situation may not be handled in a way that will be helpful to the person in crisis.
Fortunately, officers need to use communication techniques and interpreters to accommodate persons with disabilities and make sure a person gets information. Also, there are specially trained police officers in Utah to help people in mental health crisis situations. Crisis Intervention Teams (CIT) include these specialized officers, who are trained to effectively deal with a situation involving a person experiencing a mental health crisis. Many officers do not get a lot of training about mental health issues. Without training, officers may have difficulty understanding why a person in crisis reacts as they do. The CIT training gives the officers knowledge and understanding to deal with a crisis in a caring and responsive way.
Another goal of CIT in Utah is to connect with the mental health care system. Once an immediate crisis is under control, it is very important that the next steps taken benefit the person involved moving forward. CIT connects police officers and opens lines of communication to others in the mental health community. This means that CIT officers work with other mental health professionals and agencies to help people get better immediate and long term solutions.
Although it can be a scary experience, there are police officers and other professionals out there to help meet the needs of the people with disabilities and those in crisis. You can always ask for a CIT officer when you are involved with law enforcement. And remember, if you have any questions or would like more information about CIT, you can always call our office or visit the CIT website at www.citutah.com.
Public Policy – Health Insurance Marketplace
By: Andrew Riggle, DLC Public Policy Advocate
A new school year is not the only thing beginning this fall. Starting October 1st, Utahns, who do not have health insurance through an employer, were able to apply for coverage through the Health Insurance Marketplace. The Marketplace allows an individual or family to compare plans side-by-side and select the one with the right mix of costs and benefits for them. It calculates whether they are eligible for premium and cost-sharing assistance or for public programs, such as Medicare or Medicaid.
The site has easy to understand guidance on how to find and get coverage. There are also questions to help you decide which plan or option is best for you. Recently, the Utah Health Policy Project, the Association of Utah Community Health, and other partners were awarded a grant to help Utahns navigate the Marketplace and make the choice that is right for them. For more information or to request assistance, contact Take Care Utah at 801-433-2299 or email@example.com.
In addition to making insurance more available, the arrival of the Marketplace brings with it important protections for Utahns with disabilities. Come January 1st, insurers can no longer refuse coverage to a person because of a pre-existing condition or disability. They will also be unable to charge an individual with a disease or condition more. Additionally, annual or lifetime limits on the amount of coverage will be prohibited. Finally, plans offered through the Marketplace must provide at least basic coverage in 10 categories, including rehabilitative/habilitative services/devices and mental health/substance use treatment.
While plans sold through the Marketplace must make mental health and substance abuse treatment available on an equal basis with physical healthcare, it is still unclear how this will happen or what it will look like. Therefore, if you notice differences or have questions, it is critical to let Utah Insurance Department’s Office of Consumer Health Assistance know at 800-439-3805 or firstname.lastname@example.org. Similarly, because few, if any, private insurers currently cover habilitation (services designed to help a person develop a new skill rather than regain an old one), it will be crucial to keep track of any gaps in the benefit or challenges using it. The Department of Health and Human Services will consider how to further define and refine the habilitation benefit beginning in 2016.
Even with these improvements around the corner, private insurance still has substantial holes where persons with disabilities are concerned. Medicaid remains the only option for individuals with significant mental health or long-term care needs for the foreseeable future. That is why expanding it is so important.
Book Review – “Wonder”
The #1 New York Times bestseller “Wonder” by R.J. Palacio tells the story of August (Auggie) Pullman who was born with a facial deformity. The story begins as Auggie enrolls in fifth grade. Because he has had regular surgeries, 26 total, it’s his first time attending mainstream school. A quote from the first page told us this book was something special. Auggie narrates: “Via (his sister) doesn’t see me as ordinary. She says she does, but if I were ordinary, she wouldn’t feel like she needs to protect me as much. And Mom and Dad don’t see me as ordinary either. They see me as extraordinary. I think the only person in the world who realizes how ordinary I am is me.”
The story is told from the Auggie’s perspective and that of the young people around him. We invited Utah Youth to read the book. Here is what they had to say about it.
I think that good books chew you up and spit you out. The best spit you out a more courageous person than you formerly were. I mulled “Wonder”over and over in my mind for days. This is a story that touches upon all of what needs to be said in literature about disability. It’s not so gut-wrenchingly realistic that we just leave it feeling gloomy and like disability is constantly just heart breaking and sad (it isn’t)—but it shows Auggie’s struggles and challenges in a very detailed way. It’s not so unreasonably optimistic that we come away with the false perception that disability is just absolutely beautiful and wonderful and happy all the time (it isn’t)—but we do see hope. Humor. Triumph.
Disability experience isn’t a microcosm or modification of human experience—it IS human experience. “Wonder” describes Auggie’s sliver of human experience in a way that is both touching and invigorating. I left this book wanting to be a better friend to ALL my friends—with disabilities and without. I left it wanting to be a better sister to BOTH my siblings—the one with a disability and the one without. It spit me out courageous.
Laura, 19 years
While I was reading, the time went quickly because I thought about how some situations in my life are similar to the ones in the book “Wonder”. Almost all situations in life are viewed a little bit differently by each person and this is what makes each person an individual. I could relate to some of Olivia’s feelings. My brother that is seven years younger than me was deprived of oxygen at birth. This caused a brain injury that affects his physical and intellectual abilities. When Olivia narrates the story you can tell that having a sibling with any sort of disability can be hard, especially watching your sibling go through their challenges. Olivia has never really made a big deal about not having her parents around to help her with her homework, study for a test or organize her life. Her parents always tell her that she is an understanding sister to be supportive of her little brother and accept the fact that she may have to do somethings on her own while her parents are busy helping August. Olivia admits that it can be hard to not receive the help or comfort you need. She says that she doesn’t remember her life that well before her brother August was born, so it doesn’t matter that much because she doesn’t know any better. Later on, when she is talking to August, they have a good conversation about how school isn’t always fun or easy. She told August that everyone has bad days at school and that at some point everyone doesn’t like going to school.
Sometimes we see people differently than how others see them. A great example of this is on page 85 where it says “I never used to see August the way other people saw him. I knew he didn’t look exactly normal, but I really didn’t understand why strangers seemed so shocked when they saw him. Horrified. Sickened. Scared. There are so many words I can use to describe the looks on people’s faces. And for a long time I didn’t get it. I’d just get mad. Mad when they stared. Mad when they looked away.” This shows how some people try to avoid other people’s differences or act like they never notice them. Another great insight is on the next page “Coming home after four weeks felt very strange at first. I remember very vividly stepping through the door and seeing August running over to welcome me home, and for this tiny fraction of a moment I saw him not the way I’ve always seen him, but the way other people see him. It was only a flash, an instant while he was hugging me, so happy that I was home, but it surprised me because I’d never seen him like that before. And I’d never felt what I was feeling before either: a feeling I hated myself for having at the moment I had it. But as he was kissing me with all his heart, all I could see was the drool coming down his chin. And suddenly there I was, like all those people who would stare or look away. Horrified. Sickened. Scared. (Palacio 86)” For just a moment August’s older sister glimpsed him the way someone would see him for the first time. Perhaps it was good for Olivia to see her brother this way to know how other people see her brother or perhaps it was saddening for her to have to feel that way about her brother.
Stockton, age 16
This book is fiction but the author wrote about some things that really happen. When the kids at August’s school play the Plague game it sounds horrible. Maybe some people think that kids would never be that mean. At my school the principal leads the school motto at every assembly. It is: “Leopards are Safe, Kind and Responsible.” The whole school yells it together and cheers. It makes us feel like we are from a great school. The sad part is, not everyone follows the motto. Last year I became friends with a girl that I used to kind of stay away from. Then I learned that it is hard for her to know when is the right time to talk loudly or when it is isn’t the right time to tell everyone what she knows about a subject. Mom said she has a kind of Autism. I felt a little bad for her and decided to be more friendly. Well, I found out that she is great. She is super smart and we are interested in the same things like: dinosaurs, playing with kittens, games and smashing rocks open. Even though we’re ten, we both still like to play with toys sometimes. She became my best friend and I focused on getting my jobs and piano practicing done after school so that I could have her over or go to her house. At school things were hard for her. Sometimes she cried because she felt that no one liked her. Just like in the book, some of the kids started a game called Jennyitis (name changed). Everyone tried to avoid touching her so they wouldn’t catch some disease. She would chase them around trying to catch them to tell them to stop. She wasn’t the best runner at the time and she couldn’t catch them. They would just laugh and run away. That was about the time that I started standing up for her. I would tell them, “Stop it! You’re being mean and a jerk.” Jenny started telling the teacher when it would happen and I kept telling the kids to stop. Eventually they gave did. In the book, Auggie was called a monster, rat boy and mutant because he looked different. My friend was left out because she just acts her own way. I liked this book because it is about lots of different people. They all make mistakes sometimes and they all have courage sometimes too. When you get to know people, you can find out about the good in them.
Chase, 10 years
I thought “Wonder” was a really terrific book. A bit sad at times and even if it was fiction it gives you a slight look on how some kids now days are treated and how they think and feel. Gave me a good laugh and also made me a bit teary eyed at some points.
Kayelene, 13 years
Although this is a work of fiction, there is a ring of authenticity throughout the book. It reminds us of things we know, but often forget in the hassles of life. There are more good people than bad in the world, kindness is important, courage counts. There are so many brave people in this book. It made me want to be a little more brave in my life.
The Disability Law Center invites you to submit your own book or movie review for future editions of our newsletter. The book or movie should include disability related topics. Choice of article and content are subject to editorial discretion. You may send your review to email@example.com.
Thank you for reading this edition of the DLC Newsletter. See you in the winter!