Annual Report FY 2015
- Message from the Executive Director
- Competency Restoration Lawsuit
- When Skyller Sorenson Needed a Lift
- Elevating Independence in Healthcare
- Ending Cruel Discipline in Utah Schools
- Who We Serve
- Comments & Feedback
- Celebrating the ADA
- Defending Housing Rights
- FY15 Financials
- Message from the Board President
- Board and PAIMI Council Members
Message from the Executive Director
Dear Disability Law Center Friends,
During 2015, change has been a constant at the DLC and it seems to be happening at every level of the organization, from our day-to-day operations, to our approach to legal work, to how we’re engaging, supporting and interacting with our community partners.
Our expansive body of legal work includes areas that we have never before considered. Our policy advocacy continues to be a critical component of our efforts, lending prominence to complex disability-related issues which are too often marginalized in political arenas. We are growing our communications capacity and are striving to provide helpful self-advocacy resources for Utahns with disabilities and their caregivers. As you will see, we have used every tool in our toolbox.
In the year ahead, we will continue to break down longstanding barriers by pursuing legal, administrative, and other appropriate remedies to ensure protection of the rights of Utahns with disabilities. We will be working diligently on putting an end to abuse and neglect, remediating the effects of discrimination, and preserving the dignity of all people and their freedom to control their own lives.
I want to thank our staff, our Board of Trustees, and our Advisory Council. Together, they are an exceptional group of people who are dedicated, caring, and committed to what we do and those we serve. I am immensely grateful to you, our friends, and our supporters for choosing to join us on our journey.
Disability Law Center Sues State for Jailing Those Presumed Innocent
Under state and federal law, people who lack the ability to understand the nature of criminal court proceedings due to mental illness cannont be tried or sentenced.
While investigating conditions in county jails, we met a Utah County man with a history of schizophrenia who was arrested in November 2014 for shoplifting. Since this man didn’t have the resources to post bail, he was booked into the Utah County Jail. His public defender was concerned he didn’t understand the charges he faced or how the criminal proceedings worked and petitioned the court for a competency evaluation on December 17th. On March 11th, after three separate evaluations, the man was found to suffer from a substantial mental illness and deemed incompetent to stand trial. He was ordered by the court to receive mental health treatment at the Utah State Hospital (USH) to enable him to participate in his case. However, due to a chronic shortage of funding, beds, and staff at USH, the man remained confined in the Utah County Jail for six months while awaiting mental health treatment—his condition deteriorating. He continued to hear voices and was placed on suicide watch. At the end of September 2015, a bed finally became available at USH and he was transferred.
Unfortunately, this man’s situation is not unique. His is one of a growing number of cases where presumptively innocent men and women with serious mental illnesses languish in jails for months awaiting court-ordered mental health treatment so that they can participate in their criminal proceedings.
On September 8, 2015, the Disability Law Center (DLC), along with the private law firm Snell & Wilmer, filed a class action lawsuit alleging that the state hospital system’s failure to provide incompetent criminal defendants with court-ordered mental health restoration treatment within a reasonable time frame violates their due process rights under the 14th Amendment and the Utah Constitution. The lawsuit asserts that criminal defendants who have been declared incompetent to stand trial should be transported from jail to the Utah State Hospital in a timely fashion after the Department of Human Services receives the court’s order, and should be provided the needed treatment upon arrival.
“For defendants with mental illness stuck in this jail ‘limbo,’ these long delays result in needless suffering, including steadily worsening symptoms, self-mutilation, suicide attempts, and prolonged detention in solitary confinement,” says DLC Legal Director, Aaron Kinikini.”Warehousing ill people in jail when they have not been convicted of any crime, and are legally unable to stand trial for a crime, is both cruel and unconstitutional.
When Skyller Needed a Lift
After her son was bron, Bambi Sorenson found herself fearing she wasn’t prepared to care for him. Not only did she become a nurse to help her son Skyller, she also became his biggest advocate.
Bambi has always been commited to bringing the world to her youngest child, Skyller. Because of his visual and hearing impairments, Bambi tries to ensure that Skyller can feel and experience as much as possible. As he’s grown bigger, lifting and transferring him has become increasingly difficult. When Skyller exceeded fifty pounds, it became necessary to have more than one person lifting him in order to ensure his safety. As a result, Bambi began working with Independent Living (IL) to come up with the best solution for Skyller as he continued to grow.
Bambi waited another year for funding, moving houses in the meantime. The structure of the new house had to be considered, which caused further delays. Eventually, the vendor and IL retracted their support for a ceiling lift and instead, wanted Bambi to accept a bulky floor lift,that did not provide the trunk support Skyller needed.
“The problem is the people making decisions aren’t the ones living our lives. Getting the wrong equipment is like gaining a huge hat rack. If it isn’t the right, it just takes up space,” says Bambi Sorenson.
Once she exhausted her options, Bambi called the Disability Law Center (DLC). The DLC met with IL and the Director of AT funds at Rehabilitation Services. Despite the agency’s insistence on purchasing a floor lift, the DLC didn’t back down. At last the ceiling lift was approved and installed in Bambi’s new home. Skyller flys high from bed to chair to shower. He gets where he needs to go, safely.
Watch more of Skyller’s story at https://youtu.be/p6Vmqyaf4bs.
Elevating Independence in Healthcare
Ramona believes that independence is more than just a word. While continually adjusting to the effects of Usher Syndrome, Ramona fervently values her independence as something worth fighting for.
As her hearing and vision loss progress, Ramona has found it increasingly difficult to navigate McKay Dee Hospital, where she frequently has appointments. The low volume of the hospital’s elevator signal left her standing in front of the elevators, unable to hear or see when she could enter. The door sensor in the elevator also didn’t work and the doors would close unexpectedly on Ramona when she entered or exited, requiring serious effort to push them back open. This left her fearing that her guide dog, Stormy, could be injured by the doors and might later refuse to enter elevators altogether. Doing so could force Stormy into retirement and Ramona would lose her companion, with a replacement dog costing upwards of $57,000. Finally, Mckay Dee Hospital required Ramona to provide a signature on an electronic scanner, acknowledging that she understood documents with after-care instructions that she couldn’t actually read.
Ramona explained the problems to medical personnel and asked for changes, but they declined, instead telling her she should bring a companion to help her navigate the hospital and read personal medical information to her. Ramona didn’t want her friends to know the details of her medical life, or to require someone else to accompany her during visits. Frustrated, Ramona involved the Disability Law Center (DLC).
“They listened to my concerns, and immediately took action, submitting a request for accommodations,” says Ramona.
Within a few months the elevator volume was increased, the sensors were fixed and Ramona was receiving medical information in an accessible format. Today, as an advocate for the Deaf/Blind community, Ramona has successfully contacted six other Compliance Officers at six major businesses and facilities without getting the DLC involved. She’s leading change, independently.
Watch more of Ramona’s story at https://youtu.be/1Ut52P5vJ0U.
Ending Cruel Discipline in Utah Schools
Recently, Utah State Prison inmates on a hunger strike highlighted the need to abolish the overuse of solitary confinement. Unfortunately, for too long, Utah children have also been subject to this type of isolation at school.
For decades, special education students exhibiting behaviors related to their disability have been victimized in school. Christopher Stackhouse is one of those students. On more than one occasion, Christopher’s grandmother, Neomi, noticed scrapes and bruises on her grandson’s body. She went on to discover that her grandson’s injuries weren’t coming from peer-to-peer bullying, but rather from his teachers, who chose to discipline him by strapping him to a wooden chair originally designed as an assistive device. The Disability Law Center (DLC) worked with the family and the school district to end this discipline. However, the DLC heard from Neomi again.
“We went to pick him up and he was in a locked booth, naked, with feces and urine all over himself and the walls,” she reported. Time and again, when Christopher acted out, the school locked him in the booth. “He’d scratch his face until he bled. He’d come home covered in urine, with scars on his arms from bite marks,” says Neomi. One day, when his feeding tube was exposed to contaminants, Christopher became very ill and had to be transported from the booth to Primary Children’s Hospital.
The DLC filed a state complaint on Christopher’s behalf with the Utah Office of Education (USOE). The State found that his school used seclusion excessively without considering the student’s disability. Christopher was moved to a new classroom without a seclusion booth and provided more support and extra instruction. The District went on to forbid the use of posture chairs as restraint devices.
In September, after five years of perseverance by the DLC and Christopher’s family, the USOE finally published administrative rules of law that define how restraint and seclusion can be used. “In the past, each school district was allowed to develop their own guidelines for restraining and secluding students,” explains DLC Attorney, Lauralee Gillespie. “There was no administrative oversight by the USOE. We could only work with individual schools to develop appropriate behavior plans for students and there was no recourse for the harm done to these children. Now, Utah schools can be held accountable by law for their wrongful actions.
“We can never thank [the DLC] enough for the service [they] provide to those who may not be able to speak for themselves,” shares Neomi. “[They] gave us hope when we had none…thank you again for your advocacy, change can happen! All people matter.”
The new restraint and seclusion laws in Utah schools include:
- The student must be behaving in a way that is a threat to themselves or others.
- Restraint and seclusion are not to be used as discipline or in place of behavior management.
- Seclusion for fifteen (15) minutes with no change in behavior needs to be reconsidered and parents contacted.
- Excessive use of seclusion without contacting the parent or guardian in thirty (30) minutes would be a denial of education regardless of disability.
- Posture chairs are prohibited for disciplinary purposes as a mechanical restraint.
Getting to know individuals across Utah and providing the level of service they need is a privilege. Whether it’s training, legal clinics, representation, or visiting the most vulnerable people, we strive to improve lives.
Often times, we start by giving people information about their rights and tips about how to be their own advocate. Through presentations to groups, one-on-one advice from our Short Term Assistance Team and by sponsoring legal clinics, we share our expertise with people, like Claron and Cindy Alldredge. They learned that their daughter Aubry, could be educated alongside her peers and that they, as parents, have a right to be a part of all placement decisions. Also, that they could apply the law to Aubry’s own circumstances. The Alldredges spurred changes resulting in tremendous growth in their daughter. You can watch Aubry’s story at https://youtu.be/yCAU_noHCn4.
Another important part of protecting the rights of individuals with disabilities is monitoring in facilities. After documenting concerns at the Utah State Developmental Center (USDC), we launched a two year investigation of services on campus. This involved weekly monitoring visits, interviews with staff and residents, and investigations of abuse and neglect allegations. At the conclusion of our investigation, we had serious concerns about the health and safety of some residents. Also, based on observations, it appeared certain residents weren’t receiving the active treatment services they are entitled to under federal law. We summarized our concerns in a comprehensive complaint to the Centers for Medicare and Medicaid Services (CMS). Given the serious nature of our concerns, we requested CMS act quickly to ensure all individuals in USDC’s care recieve safe and adequate treatment. We’ve noted concerns for many years at USDC and we’re hopeful the results of our advocacy will improve the lives of those living there.
When someone doesn’t follow the law, the DLC is available to help get a fair solution through legal advocacy, like we did with Michael Coffman. After traveling for a long day, Michael had stopped at a familiar motel chain but when he attempted to check in with his service dog, Tinsle, the establishment tried to charge him a pet fee. Michael, who is blind, tried to explained to the desk clerk that it’s illegal to charge pet fees for a service animal. He even provided the desk clerk with documentation proving that Tinsle is his service animal. The clerk responded by throwing the paperwork in Michael’s face and insisting that he leave the premises immediately. Embarrassed and feeling legally wronged, Michael had no other choice but to find another hotel to stay in. Once Michael contacted the DLC, we were able to help him file a discrimination complaint with the United States Department of Justice (DOJ), alleging that the motel franchise had violated his rights under Title III of the ADA. The DOJ referred the case for mediation, where the DLC continued representing Michael. Through the mediation process, we negotiated a settlement consisting of monetary relief for Michael and training obligations imposed on the offending motel operators.
Who We Serve
FY15 Client Disabilities
- 34%; Physical/Orthopedic Impairment
- 33%; Mental/Beahvioral Impairment
- 7%; Neurological Disorder
- 6%; Intellectual Disability
- 5%; Autism
- 5%; Traumatic Brain Injury
- 4%; Learning Disability
- 3%; Deaf/Hard-of-Hearing
- 3%; Blind/Visually Impaired
- 2%; Neuromuscular/Skeletal Impairment
FY15 Topics of Inquiry
- Housing: 799 service requests received
- Rights Violation: 718 service requests received
- Public Services and Benefits: 429 service requests received
- Abuse/Neglect: 344 service requests received
- Non-governmental Services: 337 service requests received
- Employment: 330 service requests received
- Rehabilitation Services: 267 service requests received
- Education: 205 service requests received
- Healthcare: 156 service requests received
- Access to Public Places, Programs, Services: 153 service requests received
- Guardianship/Conservatorship: 116 service requests received
Comments & Feedback
We’ve been doing this for a long time and, naturally, people talk. Read what our clients and supporters have to say about the Disability Law Center and our services.
- “My attorney, Laura, was exceptional! I sincerely felt she was concerned for my family and me, and that throughout the entire process, our welfare was paramount in her responsibilities.”
- “Thank you LauraLee, you are forever our angel that cared about our little guy. We can never thank you enough for the service you provide to those who may not be able to speak for themselves. You gave us hope when we had none and strength at our weakest. Thank you again for your advocacy.”
- “They [the DLC] were professional and kept in contact on a regular basis. Everyone I spoke to treated me with such kindness and respect.”
- “I really appreciate the fact that we have people like you and the Disability Law Center here to protect folks with disabilities.”
- “I thought I would get the same run around I was getting from Vocational Rehabilitation. Sean, you impressed me, good to know there are people who care and show it.”
Celebrating the ADA
In July, we celebrated the Americans with Disabilities Act by inviting individuals to share on our Facebook how the ADA impacts them. The responses proved that disability law makes everyday lives better.
- Joe Coon – Tooele, UT: Joe, a father of five, shared how losing his vision to a genetic disorder led to the loss of his job and his independence. Recently, with support from Vocational Rehabilitation, Joe went back to college through a distance education program. With appropriate accommodations and assistive technology, he’s made great progress. “It’s funny,” says Joe, “before losing my eyesight, I didn’t know anything about the ADA. Now, I am extremely grateful for it. Without the accommodations I receive, I could never have gone back to school but with the right help, I’m able to do it. I’ll be starting my second year this fall.”
- James O’Neill – Park City, UT: I do a bit of everything at Burger King: dining room, cashier, etc. I’ve been here for two years. The best thing about my job is my boss. He’s an excellent guy to work for. I have big seizures. He gets small ones. All I have to do is text him “Had one” and he is OK with me missing work that day. He understands. The ADA is great, but some places need to be worked on. They need to follow the law. I’m grateful I have a boss that does the right thing.
- Brian Carlson – Smithfield, UT: I always knew the ADA was important and as a General Contractor, I’ve always made sure ADA standards are adhered to. When I remarried, I welcomed my wife and her three boys into my home. I love those boys and have a great bond with the youngest, Crew, who uses a wheelchair and a walker. I manage the construction of an elementary school and I celebrate the installation of a ramp to the school’s stage. It means every child can go onstage to receive their awards, instead of receiving them on the gym floor. Exits are accessible so kids don’t have to spend their recess time taking the long way to the playground. The ADA isn’t just about meeting federal requirements or adding convenience, it’s about valuing everyone.
- Cinimin Kofford – Torrey, UT: “Being in recreation, the ADA is so important for us to allow people to have equal opportunity and access, especially in our national parks. That’s awesome,” says Cinimin of the U.S. Forest Service.
- Hannah Bonner – Torrey, UT: “I’m passionate about the outdoors!” shared Cinimin’s coworker Hannah Bonner. The reason I’m at [Capitol Reef National Park] is I feel like people visit and it changes your life and you learn incredibly valuable lessons about yourself. I’m grateful that our government puts an emphasis on allowing all people to access these parks because we all need it for our own lives.”
Defending Housing Rights
When housing practices are unfair, individuals and families are left vulnerable. Fair housing advocates at the Disability Law Center are able to provide help to anyone who is experiencing housing discrimination.
The Fair Housing Act (FHA) prohibits discrimination in the sale or rental of housing against people because of their race, color, sex, religion, national origin, family status and disability. Utah law also prohibits discrimination based on source of income, sexual orientation and gender identity.
In November of 2015, the Disability Law Center (DLC) completed its second year of a three-year HUD Fair Housing Initiatives Program grant. This grant has allowed the Fair Housing Program at the DLC to enforce fair housing laws by assisting individuals with housing discrimination cases, conduct fair housing testing, and provide education and outreach addressing housing rights.
In the past two years, the DLC has taken over 1100 calls related to housing issues. Our Fair Housing team has has assisted 130 individuals at the case level. Case level investigations of housing discrimination involve mediating with landlords and filing administrative complaints with HUD against housing providers who have engaged in discriminatory practices. Issues addressed include denials of accommodation requests for assistance animals, denials of modification requests, refusal to rent, unequal treatment and retaliation.
Fair housing testing continues to be an integral part of the Fair Housing Program. Testing is much like “secret shopper”, but with apartments and discrimination. The DLC has conducted over 550 fair housing tests in Utah. Results of these tests are used to make housing more accessible for people belonging to protected classes. Testing based complaints have been filed alleging discrimination based on disability, race, source of income and family status. A systemic investigation resulted in a HUD complaint that led to the removal of medical releases from apartment applications for people with disabilities.
The Fair Housing team has created partnerships with many service providers who conduct outreach to members of protected classes. Fair housing trainings have been presented in 15 different languages, with over 1100 people learning about their housing rights.
FY15 Revenue by Source
- 23.3%; Protection and Advocacy for Persons with Developmental Disabilities (PADD)
- 17.4%; Protection and Advocacy for Individuals with Mental Illness (PAIMI)
- 17.7%; Other grants, foundations, donations, etc.
- 13.0%; Housing and Urban Development Fair Housing Initiative (HUD)
- 8.3%; Protection and Advocacy for Individual Rights (PAIR)
- 5.6%; Client Assistance Program (CAP)
- 5.6%; Protection and Advocacy for Beneficiaries of Social Security (PABSS)
- 3.9%; Protection and Advocacy for Voting Access (PAVA)
- 3.0%; Protection and Advocacy for Assistive Technology (PAAT)
- 2.2%; Protection and Advocacy for Traumatic Brain Injury (PATBI)
- Program Services: $1,703,301 (89%)
- Adminstrative: $191,272 (10%)
- Fundraising: $14,540 (0.8%)
FY15 Total Revenue
- Revenue: $2,075,935
Message from the Board President
On behalf of the Board of Trustees, thank you for taking the time to review the DLC’s Annual Report. It identifies some of the DLC’s significant accomplishments in the past year.
As this Report reminds us, the DLC’s mission is broad and varied. Its objectives are not only to end abuse and neglect of people with disabilities, which are certainly important aspects of the DLC’s work, but also to protect and advance civil rights. The DLC works toward the integration of individuals with disabilities into our communities in every respect. From education to employment, from commerce to voting, the DLC is working hard for the rights of people with disabilities.
The DLC’s dedicated team of attorneys and advocates works tirelessly to execute this mission. I hope you will join me in supporting the DLC in the coming year.
Board and PAIMI Council Members
Disability Law Center Board of Trustees
- Jared Fields, President
- Juliette P. White, Vice-President
- Barbara Campbell, Treasurer
- Leslie Francis, Past-President
- Anthony Bake
- Bethany Mitchell
- Bryce Fifield
- Claire Mantonya
- Clark Newhall
- Deena Lee
- Jacqueline Rendo
- James O’Neill
- Jan Brock
- Janet Deisley
- Jeff Burley
- Jessica Finlinson
- Josh Cannon
- Kevin Brown
- J. Kevin Murphy
- Michelle Aimone
- Mike Chidester
- Paul Williams
- Ramona Rice
- Michelle Aimone, Council Chair
- Evelyn Owen, DLC Liaison
- Ben Pickleseimer
- Dennis Pegues
- Emily Waddoups
- Jacequeline Rendo
- Kristen Hansen
- Laurie Sullivan-Sakaeda
- Marcy Glassford
- Marta Buriek
- Mary Burgess
- Mary Sharver
- Paul Williams
- Synda Freeman