March 2005

Changes Abound: New Name, New Program, New Location

With the start of 2005, Kansas Advocacy & Protective Services (KAPS) changed its name to the Disability Rights Center of Kansas (DRC). However, the name change was just the start of many changes for DRC this year. Along with the new name, DRC will be the new home of the Client Assistance Program (CAP) beginning April 1, and DRC will be moving to downtown Topeka by September 1.
New Name: DRC
Over the past year, KAPS has transformed itself into a new agency after an extensive reorganization. KAPS went through a very public, transparent and intensive overhaul. The reorganization, which concluded in April 2004, produced 80% new staff, a new Board of Directors, and a new focus on legally-based disability rights advocacy, resulting in 56% more advocacy provided to Kansans with disabilities. To reflect this complete overhaul, KAPS began 2005 with a new name: Disability Rights Center of Kansas, Inc. (DRC).
DRC chose a new name and logo to better reflect the new direction and new focus of the agency after the reorganization. DRC is a public interest legal advocacy agency empowered by federal law to advocate for the civil and legal rights of Kansans with disabilities. Because DRC is organizationally independent of both state government and disability service providers, it is able to focus solely on advocating for Kansans with disabilities.
“With our new name we rededicate ourselves to the empowerment of people with disabilities and the zealous enforcement of our civil rights to live free and equal lives in the community,” Kirk Lowry, DRC Litigation Director said.
Although the name has changed, the disability rights advocacy provided will continue. All of the contact information is unchanged except for the web site address (www.drckansas.org) and e-mail addresses (for example: info@ksadv.org is now info@drckansas.org).
“The new name is the culmination of 18 months of blood, sweat and tears. Kansans with disabilities rightfully demanded change at KAPS, and we did our best to deliver” Nichols said. “We reformed our agency and the services we deliver and then chose a name that better reflected our new focus.”
New Program: CAP
Starting April 1, 2005, the Disability Rights Center will acquire the Client Assistance Program (CAP). Currently the CAP is within state government and under the Department of Social and Rehabilitation Services (SRS). Every state, as a condition for receiving federal funding under the Rehabilitation Act, must have a CAP. The CAP is 100% federally funded. The CAP provides advocacy services, including administrative, legal and other remedies, to ensure the protection of the rights of persons receiving or seeking services under the Rehab Act (Vocational Rehabilitation services, Independent Living Center services, etc.). Kansans with disabilities had complained that the CAP was a state agency within SRS, the provider of Vocational Rehabilitation (VR) services, creating perceived and inherent conflicts of interest. When consumers of SRS/VR services needed the CAP to advocate against SRS/VR, they literally were working with a state employee of SRS/VR. There are eight federally funded disability rights advocacy service programs, and DRC operated seven of the eight. Adding the CAP puts all eight programs under one roof, creating a single point of entry for disability rights advocacy services.
In November of 2004, Governor Kathleen Sebelius requested public comment about the CAP and its services. Governor Sebelius decided to make the CAP independent of state government by designating it to DRC.
“As someone who has benefited from the CAP in the past, I understand the importance of having the strongest CAP possible. DRC will rise to that challenge, making the CAP as effective as possible for persons with disabilities,” Michael Donnelly, DRC Director of Policy and Outreach said.
If you are a consumer of VR or other Rehab Act services, accessing all your disability rights advocacy will be easier after April 1, 2005, because you will contact DRC.
New Location: Downtown Topeka
For the past year, DRC has been exploring the possibility of relocating its office to downtown Topeka. After months of work and some initial setbacks, DRC is pleased to announce that it will move to downtown Topeka by September 1, 2005.
There are many reasons why DRC is relocating to downtown Topeka. DRC’s current location in far southwest Topeka is not the most accessible location for many people with disabilities (there is no fixed-route bus services, etc.). Secondly, the DRC staff frequent the state Capital, state offices, the Courthouse, and other offices that are all located in downtown Topeka. By moving downtown, these offices will be more accessible to DRC staff. Most importantly, because there are multiple bus routes downtown, the new DRC office will be more accessible to Kansans with disabilities.

DRC Settles Case Regarding Out-of-State IEP

Adam Berman is a 15-year-old student who recently moved into the Wichita School District from Ohio. Adam has Williams Syndrome, which is a developmental disability characterized by musculoskeletal difficulties along with some cognitive strengths and weaknesses.
When Adam moved to Wichita, he brought with him a brand new Individualized Education Program (IEP) from his school in Ohio, which called for him to attend classes in the regular education curriculum for all but three classes. When Adam enrolled at his neighborhood school in Wichita, the school district told Adam’s parents that he would have to attend a different middle school with a segregated program for children with mental retardation. The Bermans refused to consent to the segregated placement and contacted DRC.
The Wichita School District filed for due process against the Bermans. The school district claimed the Individuals with Disabilities Education Act (IDEA) gives each state the right to do its own evaluation of a student and was not obligated to accept an out-of-state IEP. DRC attorneys represented Adam and advocated that he had a right to be served in the least restrictive environment and that the Wichita School District should honor and follow his out-of-state IEP.
The Wichita School District and DRC on Adam’s behalf came to an agreement in the case that allowed Adam to attend three or four classes in regular education each day. The settlement protects Adam’s right to be educated in the least restrictive environment.
As an interesting post script, shortly after this case was settled, Congress addressed this exact issue by requiring that an out-of-state IEP be honored. This new requirement is part of the latest IDEA reauthorization, scheduled to take effect on July 1, 2005. Under the new law, an out-of-state IEP must be honored if the child moves during the school year.

Kaufman House in Newton Shocks Nation
DRC Helps Seven Leave Reported Abusive Group Home

In fall of 2004, headlines broke out across the nation about abuse in a group home serving persons with mental illness in Newton, Kansas. The Disability Rights Center of Kansas (DRC) assisted seven residents of the group home in leaving that abusive situation.
DRC initially assisted one of the residents, whom we call “Pam” to protect her identity, in leaving the Kaufman House in May of 2004. Mr. Kaufman was the so-called therapist, landlord, service provider and guardian of Pam. Though these are clear conflicts of interest, they are allowed under current Kansas law (see story page 7).
When DRC got Pam out of the Kaufman House and to safety, Federal prosecutors had their first witness. Five months later on October 26, 2004, DRC returned with the Federal Bureau of Investigation (FBI) and helped move out the other six residents still in the group home. DRC attorneys and advocates were present when the FBI executed its search warrants and arrested the Kaufmans during this raid. DRC provided legal representation and advocacy to the residents, ensuring their rights were protected and necessary supports and services were in place immediately.
The Kaufmans have since been indicted on 34 charges including involuntary slavery/servitude, Medicare fraud, mail fraud, and conspiracy. If convicted on all counts, the cumulative sentence would be 325 years in prison and $8.5 million in damages.
Since 1985, Arlan and Linda Kaufman had operated several group homes in Newton, Kansas. The Kaufman’s residential care facility was not licensed by the state of Kansas despite a 1991 Supreme Court ruling ordering the facility to be licensed. A Kansas State Board of Nursing public report states that over 30 videotapes, seized from the Kaufman’s bedroom, vividly show Mr. Kaufman touching the genitals of both male and female patients of his, including DRC’s first client “Pam,” whom Mr. Kaufman was court appointed guardian/conservator. The videotapes also show Mr. Kaufman directing persons with mental illness under his care to perform sexual acts and “nude therapy.” Mr. Kaufman had his license to practice social work suspended in 2001. Linda Kaufman, who 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 get the residents with mental illness out of the Kaufman house and to safety until DRC intervened in May of 2004.
DRC initially received a report from Kansas Attorney General Phill Kline in early 2004 alleging the abuse at Kaufman house.
“One of the greatest responsibilities we have as a government and as a society is to protect the most vulnerable among us. I commend the excellent work done by the Disability Rights Center in the Kaufman case and am honored to have partnered with them in the cause of justice,” Attorney General Kline said, recognizing DRC’s efforts in the case.
The Kansas Attorney General and DRC held a press conference on February 8th to discuss their package of bills in response to the Kaufman House case. The article on pages 6-7 of this newsletter detail these bills that will hopefully prevent such atrocities from happening again.

DRC Helps Kansans with Disabilities Vote

The Disability Rights Center of Kansas took its responsibility to protect and advocate for voting access for Kansans with disabilities seriously. Since June 2004, DRC staff have conducted several voting rights initiatives.
Voter Caucus Registers Thousands
At the Voter Caucus in June 2004, DRC teamed with SILCK, TILRC, the Big Tent Coalition, and NAMI Kansas to train a group of people with disabilities from across the state on voter rights and on how to register voters with disabilities. The voter registration effort of the Voter Caucus resulted in over 3,000 new voters being registered across Kansas. DRC also mailed voting reminders to everyone who registered through the Voter Caucus and to DRC’s consumers.
Mailings Target 300,000
Additionally, DRC partnered with state agencies to mail voter registration information to over 300,000 Kansans with disabilities. These mailings were affirmative voter registration outreach efforts required by NVRA (National Voter Registration Act) and other laws. For instance DRC worked with the Department of Revenue to mail voter registration forms, advance ballot applications, and voter rights information to non-registered individuals with disabilities who use accessible parking placards and/or plates. Also, DRC worked with SRS to include voter registration and rights information in the Medicaid/HealthWave medical card mailings during September 2004.
DRC also partnered with the Kansas Guardianship Program (KGP) to mail voting information to people who serve as guardians for Kansans with significant cognitive disabilities.
State School for the Blind
In October 2004 DRC trained students at the Kansas State School for the Blind (KSSB) on their rights as voters. Students over the age of 18 and school staff learned about rights guaranteed to voters with disabilities and how to address discrimination at the polls. Students at KSSB had the opportunity to experience use of an accessible voting machine thanks to the Johnson County Election Office.

Brownback-Kennedy Bill Supports Expectant Parents

Senator Sam Brownback (R-Kansas) and Senator Ted Kennedy (D-Massachusetts) have teamed up to cosponsor the Prenatally Diagnosed Condition Awareness Act (S. 609). The bill provides information and support to parents who learn through prenatal testing that their child will be born with a disability like Down syndrome, Spina Bifida, Cystic Fibrosis, etc.
DRC was proud to be on hand with Senator Brownback in Washington D.C. at the March 16, 2005, press conference in support of S. 609. “Expectant parents need to know about all the possibilities their children possess, not just the disabilities their newborn children are diagnosed with,” said Rocky Nichols, Executive Director of DRC.
Many parents and children were at the press event to tell their stories about the discriminatory misinformation that doctors sometimes provide about disabilities. One mother told about her disturbing experience after a prenatal test showed that the child she was carrying had Down syndrome. She said that her Doctor pounded the table exclaiming that this was “terrible news” and if she carried her child to term that the “retard” would never be able to read, speak or live a normal life. Despite this false and biased information, she gave birth to her daughter, who is now living a healthy, happy life as a person with Down syndrome.
Senator Brownback rightfully criticized these bigoted practices, stating that “this sort of ‘weeding out’ is creating a new eugenics, a form of systematic, disability-based discrimination.”
S. 609 seeks to combat the societal biases against disability that confront families with newborn children with disabilities by providing scientific information and peer support from other parents who have had children with similar disabilities. This will help ensure parents can obtain the most up to date, unbiased information. Parents also need to hear from other parents how their child with a disability can have a full, productive, and integrated life.
This bill will help prevent the fear, uncertainty and misinformation that can lead to decisions based on societal bias instead of facts.

DRC Increases Advocacy by 56%

The reorganization at DRC has already had an enormous impact on the number of Kansans with disabilities receiving disability rights advocacy services. Although the comprehensive reorganization was only completed half-way through the most recent federal fiscal year (FFY 2004), DRC still provided legally-based disability rights advocacy to 56% more Kansans with disabilities than in the prior fiscal year.
The new focus at DRC is on direct, legally-based disability rights advocacy (legal representation, advocacy representation, self-advocacy, abuse and neglect investigations, etc.) The change in focus was in direct response to requests from the disability community of DRC for necessary legal or advocacy representation for Kansans with disabilities. The new numbers show DRC has responded to the requested needs.
The new staff and new focus has already had an impact on the number of people with disabilities served while only in place half of the year. Overall, DRC served 56% more Kansans with disabilities in FFY 2004. But when you examine those numbers more closely as they relate to legal representation versus advocacy short of filing court cases, the results are even more astounding. The number of cases where DRC provided legal representation jumped dramatically from 4 cases during federal fiscal year (FFY) 2003 to 46 cases during FFY 2004. Also, the number of persons with disabilities that DRC served through advocacy short of legal representation increased by nearly 40%, jumping from 260 cases in FFY 2003 to 360 cases in FFY 2004. Although the amount of legal representation has increased to meet the wants and needs of the disability community, DRC’s focus is still on proactively solving disability rights issues before long, expensive litigation is needed. Of the roughly 1,000 Kansans whom DRC served last year, only 46 were litigation cases.

DRC Outreach of the PABSS Program

In the past year, extensive outreach efforts have been made by DRC to increase awareness of the Protection and Advocacy for Beneficiaries of Social Security (PABSS) program. The PABSS program is part of a special advocacy program operated by DRC for Social Security beneficiaries/recipients of SSI or SSDI. PABSS is one of the eight disability rights advocacy programs funded by the federal government.
Through this program DRC provides information and advice about obtaining vocational rehabilitation and other employment services, as well as providing employment-related advocacy and other services that an individual may need to secure, regain or maintain employment. In that capacity, we can investigate and review complaints of improper or inadequate services provided to a beneficiary by an employment service provider or other entity involved in their efforts to return to work. As a result of this outreach, requests for disability rights advocacy in the PABSS program has increased from 5 in 2003 to 61 in 2004.
Currently DRC advocates can answer your basic questions about various incentives available to persons with disabilities interested in going to work, or information about the benefits of the using the Ticket to Work program, the Medicaid Buy-In (Working Healthy) option or other components of the laws implementing the Ticket to Work. We are prepared to provide consultation and representation, as resources permit, when it becomes necessary to protect the rights of Social Security beneficiaries and recipients when they experience barriers to employment. Please see the graphic to learn more about the PABSS project at DRC. If you have further questions, contact a DRC advocate at 877-776-1541.
If you would like DRC to give a PABSS presentation for your consumer group, please call the DRC office.

DRC PABSS Program
•   Provides information and advice about obtaining vocational rehabilitation and other employment services.
•   Provides employment related advocacy and legal representation to secure, regain or maintain employment.
•   Addresses issues of employment discrimination related to denial of reasonable accommodations.
•   Investigates and reviews complaints of improper or inadequate services provided by Employment Networks or other providers.
•   Answers basic questions about work incentives available to persons with disabilities who want to work and keep their benefits and Medicaid.
•   Provides information about Ticket to Work.
•   Addresses other related issues involving housing and transportation.

“Life, Liberty and Safety” 2005 Policy Initiatives of the Disability Rights Center of Kansas

Though DRC’s main focus will continue to be on case work, DRC also focuses on public policy issues that impact persons with disabilities. In 2005, DRC’s public policy issues focus on issues of “life, liberty and safety” for Kansans with disabilities.
Life:
Limiting a Guardian’s Ability to Withhold Medical Treatment
Current Kansas Law makes it far too easy for a guardian to withhold or withdraw medical treatment from a person with a disability. The law states that a guardian can remove life preserving medical treatment, including food and water, from their ward if two physicians certify that the person relies on artificial means for survival (feeding tubes, etc.) and that their disability will not improve.
It is not required that the person with disabilities be on emergency life support to have life sustaining food, water or medical care withheld. Furthermore, the person with a disability, whose life sustaining medical treatment is being withheld, does not have a say in what happens to them. The Court has no discretion and is required to issue the order to withhold treatment. This is a life and death matter for persons with disabilities.
DRC’s original proposal on this issue was detailed in HB 2307, which called for an automatic due process for persons with disabilities under guardianship to ensure that their intent regarding withdrawal or withholding of food, water and medical care is honored. The House Judiciary Committee held a hearing on HB 2307, but did not take any action on it. However, with all of the media attention surrounding the Terri Schiavo case in Florida, the full House amended the DRC proposal on withholding and withdrawing of food and water into SB 92.
The House passed SB 92 with a 95-29 vote, and it will now be considered by the Kansas Senate. If you want to weigh in on the issue, contact your state Senator.
Protecting All Kansans with Mental Retardation from the Death Penalty
Recently, the Kansas Supreme Court decided a portion of the death penalty law is unconstitutional. DRC wants to further clarify Kansas death penalty law as it relates to persons with significant intellectual functioning disabilities, of which the label “mental retardation” is perhaps the most well known.
DRC wants to ensure that persons with significant intellectual functioning disabilities (defined as two or more standard deviations below the norm on an IQ test) are protected from the death penalty, regardless of the age of onset of the disability. Nearly 80% of Americans support preventing persons with these types of disabilities from being executed.
DRC has endorsed SB 14 and SB 32. Both of these bills would prevent the death penalty for persons with significant intellectual functioning disabilities from the death penalty, regardless of the “age of onset” of the disability. If a person has significant cognitive disabilities, it should not matter when the disability first occurred. Both also delete the questionable language that ties the disability to understanding the criminality of ones actions. Finally, both bills ensure determination of the disability is made pre-trial.
SB 32 is proposed by the Kansas Judicial Council and SB 14 was endorsed by the Interim Judiciary Committee. Because the Legislature is waiting for the US Supreme Court to act on our death penalty law, the Legislature is putting all death penalty bills, including these, on hold.
Liberty & Safety:
Lessons from the Kaufman House Case
The Kaufman House case, in Newton Kan., has brought the wrong kind of national attention to Kansas. DRC and the Kansas Attorney General have developed a package of bills to help prevent cases like this in the future.
At the heart of the Kaufman case is the issue of conflicts of interest. The conflicts of interest in this case are clear: Mr. Kaufman was the 1) Guardian/Conservator, 2) therapist, 3) landlord and 4) alleged sexual abuser of the woman for whom he was appointed to protect. These conflicts of interest are unfortunately allowed under Kansas law (Read more about the Kaufman case on page 3).
Three Bills by DRC & the Attorney General on Kaufman House:
1. Eliminate Systemic Conflicts of Interest - Kansas law must be changed to prevent non-family guardians/conservators from having conflicts of interest in relation to their ward. This change is proposed in HB 2307 and SB 240. The Conflict of Interest standards of the National Guardianship Association (NGA) state that non-family guardians/conservators “should avoid even the appearance of a conflict of interest and should provide no direct service to the ward,” so there is no financial, agency, or personal conflict of interest.
2. Hold Unregulated Group Homes Accountable - Oversight of small, unlicensed group homes must be increased. This is one of the reasons why it took so long for the Kaufmans to be brought to justice. In order to ensure accountability, the law should change to require unlicensed group homes that serve persons with disabilities to meet some minimum licensure and be accessible to investigators of abuse, neglect, and exploitation (SRS, APS, DRC, etc.) The House has done this with an amendment to SB 116.
3. Collaborative Abuse, Neglect & Exploitation Unit - HB 2306 and SB 239 establish a Unit to bring to justice perpetrators of abuse, neglect and exploitation of persons with disabilities through either criminal prosecution (through the Attorney General) or civil remedies (through DRC), to prevent future Kaufman houses.
Safety:
Special Education Accountability Reform
School funding is a major issue for the Kansas Legislature. Accountability of the expenditure of those dollars should also be a key issue. DRC and a coalition of disability organizations believe that discussion of school finance must happen concurrently with the following accountability reforms.
Seclusion Rooms & Restraints
There is currently no state law or policy that limits placing children in damaging seclusion rooms or harmful restraints. DRC and the coalition have asked the Legislature to require accountability reforms in the use of seclusion and restraint through state law and establish a statewide policy. Persons in state institutions (KNI, Larned, etc.) have more protection from seclusion and restraint than school children because Kansas regulates these tactics in state institutions. SB 241 and HB 2339 establish a consistent, statewide policy based on the President’s New Freedom Report limiting the use of seclusion and restraint. This will help hold schools accountable for the use of these damaging measures on the 65,000 children receiving special education services. The Senate Education Committee directed the State Board of Education to adopt rules and regulations to establish protections and standards on the use of these potentially damaging interventions.
Advocacy & Training for Parents
Accessing Special Education services is complex, confusing and intimidating to parents of students with disabilities. Along with providing greater funding support of public schools, the Legislature should also provide state funding for independent supports, services and training to assist parents to more effectively participate, better navigate, and advocate for their child’s rights in Special Education. Kansas spends over $3.7 billion on public schools, but no state funds are provided for these supports of the parents of the 65,000 children receiving special education services. This training and advocacy under SB 241 and HB 2339 will make the system more accountable and less confusing.

DRC Helps Transform Fixed-Bus Route System

In late August, the United States Court of Appeals for the Tenth Circuit supported the right of people with disabilities to enforce the Americans with Disabilities Act (ADA) and the Rehabilitation Act. The Court upheld this right after hearing an appeal regarding several plaintiffs with disabilities who were “testers” (advocates who tests access and other potential violations of the law) of access to the City of Wichita’s public transit system.
The original case, Tandy v. City of Wichita, started when Mike Oxford, Executive Director of the Topeka Independent Living Resource Center (TILRC), received several complaints about the Wichita Transit fixed route bus service. As the leader of Kansas ADAPT, Oxford organized and mobilized 63 advocates from across the state to test the Wichita transit system. On March 23, 2001, the advocates tested the Wichita Transit for access, services, Braille, and communication. The transit system failed terribly, leaving advocates stranded all over the community. Braille was not available, people were not secured, stops were not called, lifts were not on buses, and when lifts were on buses, drivers refused to deploy them.
Ten of the advocates filed a lawsuit in federal court against the Wichita Transit on these accessibility issues, represented by Kirk Lowry - then an attorney for TILRC. In District Court, Judge Thomas Marten issued a permanent injunction against Wichita for its long-standing policy and practice of refusing to deploy lifts on routes they designated as “not accessible.” This forced Wichita to transform its bus system and make the routes and buses accessible.
Marten, however, also ruled that only three of the advocates were entitled to a trial, but dismissed the other seven for lack of “standing.” Those seven advocates appealed to the United States Court of Appeals for the Tenth Circuit.
The issue at the heart of the appeal was legal standing of the “testers.” Because several of the plaintiffs were not from Wichita, but were advocates who went to the city as “testers” to examine the accessibility of the fixed-route bus system, the City of Wichita argued that they did not have standing. The lower court agreed with the City and dismissed 7 of the 10 plaintiffs in the case, which made them ineligible for damages or a court order to stop the discriminatory policies.
DRC Litigation Director, Kirk Lowry, appealed the lower Court’s decision to the Tenth Circuit Court of appeals where a three-judge panel ruled that even one-time users who will return and use the transit system have the right to both a court order for access and damages for violation of the ADA and Rehabilitation Act. This decision requires all courts in the 10th Circuit, (Kansas, Oklahoma, Colorado, Wyoming, New Mexico, and Utah), to apply the new standard set forth in this decision regarding the rights of testers to hold systems accountable.
“This is a significant win for people with disabilities who will now have more power as testers to hold cities accountable for violations of the ADA for accessibility,” Kirk Lowry, DRC Litigation Director said. “People with disabilities have a civil right to access public transportation services. This decision gives individuals with disabilities throughout Kansas the power to enforce that right.”

The following federal funding partners shared in the cost of producing this brochure: The Administration on Developmental Disabilities (grants #G-0501KSPA17 and G-0304KSVOTP); the Center for Mental Health Services (grant #SMX209700-05); the Rehabilitation Services Administration (grant #H240A050017 and # H343A050017); the Social Security Administration (grant #17-B-20019-7-01); Health & Human Services, Health Resources and Services Administration (grant #1X82MC03908-01-00). These contents are solely the responsibility of DRC and do not necessarily represent the official views of the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration.

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