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Advocacy Priorities & Stories
Priority 1: Serious abuse, neglect, or exploitation
We help Kansans with disabilities who are victims of abuse, neglect, or exploitation. We may investigate what happened. We may provide legal or advocacy services to help.
Kaufman House Case
In the fall of 2004, headlines broke out across the nation about a mental health group home, the Kaufman House, which was abusing persons with mental illness in Newton, Kansas. The Disability Rights Center of Kansas (DRC) assisted several residents of the group home to leave that abusive situation. For over 20 years, the victims were subjected to bizarre and terrible sexual abuse, physical abuse and what prosecutors described as “involuntary servitude.”
DRC initially assisted one of the residents, whom we call “Barb” to protect her identity, in leaving the Kaufman House in May of 2004. Arlan Kaufman was the so-called therapist, landlord, service provider and guardian/conservator of Barb. Though these are clear conflicts of interest, they are allowed under Kansas law. After the horrible events at the Kaufman House were brought to light, there were thankfully many changes made to the laws in Kansas, including enhanced reporting of guardians’ conflicts of interest to the Court and greater oversight and licensure of these types of settings.
As the officially designated Protection and Advocacy agency for Kansas, DRC has special powers under federal law to investigate abuse and neglect perpetrated against people with disabilities. DRC used those powers in 2004 to gain access to the Kaufman House and investigate the allegations of abuse. DRC’s investigation confirmed the terrible abuse.
When DRC helped Barb courageously leave the abusive Kaufman House, Federal prosecutors finally had their first witness free from the Kaufman’s influence. This created a snowball effect where just five months later on October 26, 2004, DRC returned to the scene with the Federal Bureau of Investigation (FBI) and helped the other six residents still in the group home to move out. At the same time the FBI executed its search warrants and arrested the Kaufmans during the raid. Federal authorities seized over 30 videotapes from the Kaufman’s bedroom, which vividly showed sexual abuse perpetrated on both male and female patients, including “Barb.” The videotapes provided direct proof of the abuse. DRC then continued to work on behalf of the former Kaufman House residents by providing legal representation and advocacy to the residents, in order to ensure their rights were protected and necessary supports and services were in place immediately.
The Kaufmans have since been convicted on over 30 federal charges including involuntary slavery/servitude, Medicare fraud, mail fraud, and conspiracy.
One of the most troubling aspects of this case is the fact that the State of Kansas knew about the terrible abuses for over 20 years, but state agencies were never able to get residents out of the Kaufman house. Over 12 reports of abuse and neglect were made to the State, including four reports from former residents or their families, yet the State seemed powerless to stop the abuse. DRC’s special investigation authority, as the Protection and Advocacy agency, allowed DRC and federal authorities to shut down the Kaufman house in six months, whereas other agencies couldn’t stop the abuse for over 20 years.
Additional red flags of the abuse should have risen when Mr. Kaufman had his license to practice social work suspended in 2001. His wife Linda Kaufman, was a Registered Nurse (RN) and administered medication and medical treatment to the residents, had her nursing license suspended in early 2004. Despite these professional license suspensions, no government agency was able to help the residents with mental illness out of the harmful environment they faced at the Kaufman House and to safety until DRC intervened in May of 2004.
Since the Kaufman’s have been brought to justice, DRC attorneys represented the victims to ensure that they received as much restitution as possible.
Read more stories about DRC's Serious Abuse, Neglect & Exploitation Priority here...
Priority 2: Community-based services and healthcare
We help Kansans with disabilities access these services. These include Medicaid, Medicare, mental health services, long-term care, and home and community-based services (also called “HCBS Medicaid Waiver services”).
Magnolia's Story
Magnolia is an energetic, bubbly five-year-old. She loves to swim, adores her brother and waves at everyone she sees. She loves being around people. Magnolia was also diagnosed before birth with Wolf-Hirschhorn Syndrome, which is a condition caused by a missing part of the 4th chromosome and affects motor and verbal skills.
Magnolia started occupational therapy (OT) at age two. OT is a standard service to be covered through Medicaid. In fact, for children and youth under the age 21, federal law has special protections that ensure they receive basically most any health or long-term care that they need. The program is known as “EPSDT” – which stands for Early Periodic Screening Diagnostic and Treatment. In Kansas it is branded as the “KanBe Healthy” program. When Magnolia started OT four years ago, she could barely hold an object in her hand and had no grip or wrist movement. Thanks to OT, she can now open containers, help dress herself, turn pages of books and so much more.
In August 2015, her Managed Care Organization, called Sunflower, denied Magnolia 30 minutes of OT per week, acknowledging she was making progress, but stating she was not making enough progress and that “she might not get better with more therapy.” This was of course a ludicrous argument. EPSDT does not state that she has to be making “enough” progress to access OT. It simply must be medically necessary, which it clearly is.
Magnolia’s mom, Hilary, had enough of the bureaucratic run around from her MCO. She contacted DRC for legal representation. On October 1, 2105, DRC attorneys filed a request for an administrative hearing to seek to overturn Sunflower’s decision. DRC asserted that this denial violated federal law and that the OT was medically necessary. On May 30, 2016, the decision was reversed, and Sunflower was ordered to approve the requested OT services!
Magnolia continues to make huge strides because of the OT she is receiving. According to her mom, “She amazes us every single day! She is doing more at the age of 5 than I ever thought possible for her whole life! I truly see so much independence in her future because of OT.”
Read more stories about DRC's Community-Based Services and Healthcare Priority here...
Priority 3: Employment
We protect the disability rights of Kansans in employment issues.
Lewis' Story
Lewis Gladue has always loved working in the food industry. “I love meeting people and trying out new food,” said Lewis. In August 2015 Lewis was working to find employment with his job coach through Bert Nash, the community mental health center in Lawrence. He was excited to learn Taco Johns in Lawrence was hiring. He applied right away. He was called for an interview with the assistant manager, who was very impressed with his experience, and he was told he would know something the following week.
When Lewis went in to check on his application, he was told by the manager he would not be hired because they already had someone with a disability working there, and they wanted someone higher functioning. This devastated Lewis. “I broke down in tears. It made me feel worthless. My job coach encouraged me to contact DRC,” he said.
DRC Kansas was able to negotiate a settlement for Lewis, which included sensitivity training for all the staff of Taco Johns. Lewis is currently employed at Little Caesars and is thankful for DRC’s legally-based advocacy. “I am very appreciative of the help DRC gave me. They kept me in the loop and were patient with me. I will always refer anyone to DRC if they need help.”
Read more stories about DRC's Employment Priority here...
Priority 4: Community Integration
We provide advocacy and legal services to help Kansans with disabilities leave institutions and live in the community.
Faraj's Story
Imagine that your physical impairments as a parent do not allow you to provide the life-sustaining care your child needs. Now imagine you have another child with a disability and you are trying to care for them both. This was everyday life for Faraj’s parents. Faraj Chaaban and his brother both have a diagnosis of Cerebral Palsy. His parents contacted DRC because they were no longer able to care for him and needed home and community based services.
DRC provided services to Faraj’s parents, including technical support and free legal advice about extra medical services available through the Medicaid Early and Periodic Diagnosis Screening and Treatment (EPSDT) program. EPSDT is a unique child health component of Medicaid that is designed to meet the special physical, emotional, and developmental needs of children. Under the EPSDT federal law, special rights and access to greater services are granted to children and youth under the age of 21 and it requires the state’s Medicaid plan to cover a comprehensive set of benefits. Unfortunately, EPSDT is not well advertised by the state of Kansas. Many parents and doctors are unaware that EPSDT services even exist.
A DRC attorney worked closely with Faraj’s doctor to inform him about EPSDT. DRC prepared an appropriate checklist for the doctor to fill out in order to obtain Medicaid authorization for Faraj to receive services in his home. Faraj was also denied services under the DD Waiver and had been put on the statewide waiting list. Today in Kansas, individuals on the DD Waiver waiting list can wait upwards of 10 years for services. Fortunately, there is a crisis exception to the waiting list for those who are at imminent risk of institutionalization. Faraj’s parents applied for crisis funding but were denied because he lives with them. Due to their disabilities, Faraj’s parents cannot lift more than 50 pounds, which prevents them from providing Faraj with the care he needs. Besides the day-to-day care that Faraj needed, he had recently undergone a 14-hour surgery which required a great deal more care. His parents could not provide this level of care for Faraj while continuing to care for their other child with Cerebral Palsy, and go to work.
With help from a DRC Advocate, Faraj’s physician stated more clearly in a revised letter specifically identifying the scope of services Faraj required for the crisis-funding request. The local Community Developmental Disability Organization (CDDO) reviewed the revised letter and approved Faraj for crisis funding services. The services will provide in home care for Faraj which will prevent him from being institutionalized. His parents credit DRC’s advocacy with obtaining EPSDT and HCBS Waiver services, as they previously ran into numerous road blocks. With DRC’s legally based advocacy, Faraj avoided expensive and unnecessary institutionalization and continues to live at home with his parents and younger brother while receiving assistance through the HCBS DD Waiver.
Read more stories about DRC's Community Integration Priority here...
Priority 5: Accessibility
We advocate for an accessible society for people with disabilities. Our advocacy may include advocating for changes to a building or program so people with disabilities can access and use them.
Matthew's Story
Matthew Whaley was a 7-year-old Kansas boy with Cerebral Palsy who wanted what many kids his age wanted, to play little league baseball. While Matthew had some mobility challenges, he requested no rule changes or accommodations; he just wanted to take the field with other kids his age. Yet solely because of his disability, the Scott City Recreation Commission refused to allow Matthew to play ball. His mother, Jennifer, knew that it wasn’t right to exclude Matthew simply because of his disability. She contacted the Disability Rights Center of Kansas (DRC) seeking information about Matthew’s legal rights.
The DRC’s legal team met with Jennifer and Matthew and quickly recognized that excluding Matthew from a youth recreation activity was a violation of Matthew’s civil rights under the Americans with Disabilities Act (ADA). Under the ADA, all public programs or services, including city sponsored recreational sports, must be accessible to and inclusive of people with disabilities. In response to Scott City’s denial of Matthew’s request to play baseball, DRC Attorneys filed a federal lawsuit on Matthew’s behalf to enforce his rights under the ADA.
After hearing the evidence, U.S. District Court Judge J. Thomas Marten looked at Matthew in the courtroom and said, “Matthew, you’re going to play baseball this summer.” Judge Marten imposed a preliminary injunction ordering the commission to allow Matthew to join the team and play ball. Judge Marten told Matthew that “Little league baseball is not just about fielding skills, hitting skills and winning. It’s about character and teamwork and toughness”. Matthew got his wish to play baseball. The ruling was a positive precedent for all Kansans with disabilities. It helped re-enforce the rights of all people with disabilities under the ADA and helped ensure that individuals with disabilities would enjoy full integration into all public programs and services, even recreational opportunities. As news of the decision spread, Matthew’s notoriety as a pioneer for the rights of people with disabilities grew. He received an autographed baseball from George Brett, a former Kansas City Royal and member of the Major League Baseball Hall of Fame. Kansas Governor Kathleen Sebelius had contacted Brett and asked if he would sign the ball in recognition of Matthew’s courage to stand up and fight for his rights.
The next summer, Matthew was honored in Washington D.C. at a celebration of the 15th anniversary of the (ADA). Matthew and Jennifer provided testimony to a Congressional briefing which was cosponsored by the Congressional Disability Caucus and the Consortium of Citizens with Disabilities. After the hearing, Jennifer, Matthew’s mom, said, “It meant a lot to have that honor because it is more than just a small issue with Matthew. We hope that our case will give other parents the courage to see that it is OK to stand up for their rights and their children’s rights.” Matthew’s story was so compelling that it was picked up by the national media and was featured as a case example of what is good about the ADA on NPR’s Morning Edition.
Read more stories about DRC's Accessibility Priority here...
Priority 6: Special Education
We help Kansas students enforce their right to special education and related services. We focus on protecting the right of students to receive education in the least restrictive environment. We protect against inappropriately using discipline when it is actually a disability issue.
Eldon's Story
Looking at the huge smile on Eldon Leighty’s face illustrates his joy at having Gracie by his side. Eldon is 7 years old from the small southwest Kansas town of Manter, near the Colorado border and north and west of Liberal, Kansas. Eldon has a diagnosis of autism and depressive disorder. Eldon has a service dog named Gracie which has been trained and certified by CARES, Inc. to help him manage the manifestations of his autism. Eldon has daily bouts of extreme anxiety, behavior problems, and runs off. He engages in self-injurious behavior and has trouble with transitions.
Gracie is trained to identify when Eldon’s behaviors are escalating and help address the situation by immediately going up to him and touching him to help cease his behavior. Gracie does not require a signal from Eldon to provide this type of support. Gracie provides a calming influence and sense of security which helps Eldon socialize and communicate. She is also trained to assist Eldon in ceasing repetitive behaviors and helps prevent him from other negative actions, such as leaving the school grounds.
Eldon attends elementary school and has an Individualized Education Program (IEP). His parents asked the school district several times to allow Eldon to have Gracie at school to assist him with his functional limitations in order for him to have the best chance to receive a quality education. The request was made pursuant to Title II of the Americans with Disabilities of Act (ADA) and the Rehabilitation Act of 1973. The district refused each time, treating the request as an IEP issue instead of a request for a reasonable accommodation under the ADA and Rehabilitation Act.
A DRC attorney filed a complaint with the Civil Rights Division of the U.S. Department of Justice (DOJ) on behalf of Eldon. The DOJ accepted the complaint and began an investigation. DRC cooperated closely with the DOJ and advocated for Eldon’s rights. A DRC Attorney took great care to make certain that the case was prepared to enforce Eldon’s rights. The DOJ informed the school district that its refusal violated Eldon’s civil rights under the ADA and Rehabilitation Act. After meetings with the DOJ, the DRC attorney, and Eldon’s parent, the school district agreed to a plan to allow Gracie to accompany Eldon at school. At the end of Eldon’s first day of school with Gracie, he called the DRC attorney to say “Thank you for helping me have Gracie at school . . . I’m so happy!”
Eldon’s case offers a strategy to protect and enforce the rights of other students with disabilities to have a service animal at school.
Read more stories about DRC's Special Education Priority here...
Priority 7: Fair Housing
We help protect the disability rights of Kansans in housing issues.
Sarah's Story
*Name changed to protect client's identity
One of DRC’s priorities is to advocate for people when their rights under the Fair Housing Act are being obstructed because of their disability.
The story of one consumer that DRC represented illustrates the importance of housing advocacy. Sarah has a mental illness which makes it difficult for her to attend to her affairs during times of stress. She has lived in the same Section 8 apartment for 15 years. She has a companion dog as an accommodation.
Last winter, Sarah was mugged and she underwent abdominal surgery because of her injuries due to the crime. One physical result of the surgery was a problem with incontinence. About that time, construction workers who were renovating her apartment supposedly complained to the manager about the smell of urine in the apartment. However, the urine smell was caused by used diapers in the trash, caused by incontinence. The manager claimed it was caused by the companion dog, so the manager posted and mailed lease violation notices. Sarah was staying at a friend’s house while recovering from surgery to correct the incontinence and did not see the notices. Sarah told the manager that she would be gone.
By the time Sarah returned to find the notices, the manager had terminated the lease, and Sarah was homeless. Sarah and her case worker met with the manager to try to resolve the problem. The manager refused and later told the case manager that “everyone knows Sarah is crazy.”
DRC provided legal representation to Sarah when the owners sued to evict her based on the alleged lease violations. DRC entered a counter claim for Fair Housing Act violations, arguing that the supposed violations were minor and the real reason for the eviction was Sarah’s mental illness. At the urging of the judge, the case was settled during the trial. Sarah remains in her apartment because of DRC’s intervention.
Read more stories about DRC's Fair Housing Priority here...
Priority 8: Accountability of Guardians & Other Legal Decision Makers
There are many alternatives to guardianship/conservatorship. We advocate for those alternatives. We help end guardianships or conservatorships that are not needed. We may help change the guardian or conservator if they abuse or neglect a person with a disability. We also hold other legal decision makers accountable for violating the rights of a Kansan with a disability. These decision makers may be representative payees, trustees, etc.
Cullie's Story
Cullie Orr’s journey to independence was not easy. However, Cullie knew exactly what he wanted. He wanted to choose where he lived. He wanted a job. He did not want or need a guardian. The Disability Rights Center of Kansas (DRC) worked with Cullie to enforce his rights so that he could obtain those things for himself.
What happened to Cullie is an example of how without the right legal representation and advocacy in guardianship cases, the system will continue to ignore the wishes of individuals with disabilities.
Cullie is a person with Down Syndrome and was living with his mom, sister and two nephews in Osawatomie, Kansas. Tragically, Cullie’s mother passed away. Cullie was of course upset because of his loss. So, Cullie visited his Uncle Bill and Aunt Charlotte in Missouri. After being in Missouri for two weeks, Cullie’s sister told him she was now his guardian. His sister essentially told Cullie he must do what she said and that he had to return to Osawatomie. His sister was also his social security representative payee and controlled Cullie’s money.
Cullie did not want to go back to Osawatomie. Cullie had decided that he wanted to live in Missouri. He called the DRC for help. One of DRC’s attorneys, Kip Elliot, investigated the matter. DRC found that Cullie’s sister, in fact, was not his guardian. Cullie had no guardianship placed over him. DRC attorney Kip Elliot advised Cullie that he did not have to return to Osawatomie. DRC also advised Cullie that he could ask Social Security to allow him to be his own payee or to have someone of his choosing become his payee.
When Cullie’s sister was told that Cullie did not have to come back to Osawatomie, she filed a petition in the district court in Osawatomie asking to become Cullie’s guardian. The court appointed an attorney for Cullie in the guardianship case. However, Cullie wanted DRC to represent him. The court appointed attorney would not step aside and would not follow Cullie’s requests, even though Cullie was the client. DRC attorney Kip Elliot filed pleadings in the court to allow him to represent Cullie. A hearing was set to determine who would represent Cullie. DRC also paid to have an evaluation on Cullie performed. The evaluation confirmed that Cullie did not need a guardian.
The night before the court hearing to decide who was going to represent Cullie, DRC attorney Kip Elliot received a call that Cullie’s sister was going to drop her pursuit of the guardianship. However, Cullie’s court appointed attorney wanted Cullie to pay nearly $1,000 for attorney fees! DRC attorney Kip Elliot objected, filed a motion and appeared for the hearing. A few minutes before the hearing started, Cullie’s sister paid the court appointed attorney’s fees with cash and the case was dismissed.
Cullie is now living where he wants to live in Missouri, is receiving community-based services and has a job working in the community Cullie has changed his Social Security representative payee to his Uncle Bill.
This case is important not only for Cullie but for the rights of individuals who are appointed attorneys in guardianship cases. Too often court appointed attorneys do not fight for the rights of their clients in guardianship proceedings. Unfortunately, people still have misperceptions about disability. People don’t focus enough on the person’s abilities and how with the right services and supports guardianship can be avoided. If DRC had not gotten involved and fought for Cullie’s rights, Cullie would be burdened with an unnecessary guardian and he would not be living and doing what he wants.
Read more stories about DRC's Guardianship Priority here...