August 2004

New Staff, New Focus and New Name
KAPS Completes Reorganization

After seven months, over 400 applicants, 152 interviews, re-hiring all staff positions, and considerable effort, the Kansas Advocacy & Protective Services (KAPS) comprehensive agency wide reorganization was recently completed, 11 months ahead of schedule.

KAPS now has new staff, a new focus on disability rights advocacy and legal representation, and a new name authorized by the Board of Directors. The new name, Disability Rights Center of Kansas, will be implemented when the agency moves to a new location that is more accessible to Kansans with disabilities (on a bus route, in downtown Topeka, etc). The hope is to have the move and new name implemented by the end of the year (see story about new name).
Under new Board and executive leadership, KAPS began its reorganization in September of 2003. The KAPS reorganization effort involved two important and powerful principles:
1. Every job description at KAPS was rewritten to better respond to the disability rights needs of Kansans with disabilities;
2. Every redesigned KAPS staff position was opened up to public competition and outside applicants. The most qualified candidates were hired.
The end result of this comprehensive reorganization was the hiring of 10 new staff members (out of a total of 13 positions), or nearly 80% new staff. Because of the comprehensiveness of this agency wide reorganization, KAPS has literally been transformed into an entirely new organization.

The reorganization was also about refocusing KAPS’ priorities. Through the Listening Tour and last year’s input surveys, the disability community told KAPS that they wanted more and better advocacy and legal representation.   In response to these concerns, and within the existing budget, KAPS nearly tripled the number of attorneys on staff to provide representation to persons with disabilities. KAPS also hired advocates and other staff to better meet the disability rights needs of Kansans with disabilities. As the “New Name for KAPS” story on page 11 shows, this has allowed KAPS to increase its cases in litigation 10 times and increase the number of advocacy cases by 38%.

“This reorganization was structured to make us a more effective disability advocacy organization,” said Rocky Nichols, Executive Director. “The examples in this newsletter of our recent advocacy and legal representation give a hopeful glimpse as to what the future holds for our organization. We have refocused our efforts on what we call the ‘Three C’s’...Customer Service, Changing lives, and Credibility.”

Rocky Nichols, M.P.A. – Executive Director
Rocky brings 11 years of non-profit experience to KAPS, either as a management-level employee, board member or non-profit consultant. Rocky also has 13 years of experience in the Kansas Legislature (11 as a member of the Kansas House of Representatives & two as legislative staff), and he is a veteran advocate for disability rights issues. Rocky is also a former member of the Next Generation Leadership Committee of the President’s Committee on Mental Retardation (PCMR). Rocky received his undergraduate degree from Washburn University and a Masters in Public Administration from the University of Kansas. Rocky was the recipient of more than 20 awards for legislative leadership and advocacy, including many significant awards on behalf of persons with disabilities, including:
•   Elizabeth M. Boggs Award for Outstanding Leadership in the area of Mental Retardation, Presidents Committee on Mental Retardation, 1998
•   Outstanding Public Official of the Year Award, Kansas Association of Community Mental Health Centers, 1996 and 2002
•   Kansas NAMI Advocacy Award, 1996 and 2000

Kirk Lowry, J.D. - Litigation Director
Kirk is a licensed attorney and a 1987 graduate of Washburn University School of Law. He was in private practice from 1987 to 2000 and is a past president of the Kansas Trial Lawyers Association. Mr. Lowry was an adjunct professor of law at Washburn Law School and has tried many significant cases for persons with disabilities in state and federal court. In 1999, Kirk represented a plaintiff with a disability in Murphy v. UPS, an ADA case, in the United States Supreme Court. He has argued and won both sovereign immunity and Ex parte Young cases in the Tenth Circuit Court of Appeals. From 2000 to 2003, Kirk was the attorney for the Topeka Independent Living Resource Center, where he represented numerous persons with disabilities in legal cases.

Michael Donnelly, B.S.
Director of Policy and Outreach
Michael is the former Executive Director of the Center for Independent Living in Berkeley CA, a historic disability rights organization and the first independent living center in the world. Prior to that, Michael was the former Executive Director of the Topeka Independent Living Resources Center, providing advocacy and supports for Kansans with disabilities. Most recently, he was the Executive Director of Big Brothers Big Sisters Topeka. He received a B.S. in Bible Ministries from Manhattan Christian College, in Manhattan, Kansas. He is a past member of the Kansas Commission on Disability Concerns, past member of the National Council on Independent Living Board, past member of the National ADA Implementation Network, and past president of the Kansas Association of Centers for Independent Living.

Timothy Voth, J.D. – Advocacy Director
Tim graduated from Bethel College and Washburn University School of Law. He was the former House Manager at the Ronald McDonald House in Topeka. Tim has been employed at KAPS since 1988, first as a mental health attorney, then as Intake Coordinator and Interim Executive Director. As Interim Director, Tim worked closely with the new Board of Directors to institute many of the initial reforms prior to Rocky Nichols’ arrival as Executive Director. Tim serves on the Intake and Referral Advisory Committee for the National Association of Protection and Advocacy Systems (NAPAS) and the Steering Committee for the Topeka Victim Offender Reconciliation Program.

Debbie White, C.P.A. - Fiscal Officer
Debbie has worked in public accounting, state government and the nonprofit sector. She is a licensed Certified Public Accountant. For the past three years, Debbie was the Chief Financial Officer of Kansas Legal Services. As CFO of Kansas Legal Services, she managed a budget that is nearly eight times the size of KAPS, with 27 cost centers and dozens of grant financial reporting requirements. Debbie is a native Kansan and received her undergraduate degree in accounting from Kansas State University.

The Leadership Team prioritized the KAPS budget to dedicate more funding to staff who do direct legal representation and advocacy.

Summer Duke, J.D.
Disability Rights Attorney
Summer Duke received her law degree from the University of Missouri-Kansas City Law School and received her Bachelor of Arts degree in history from Missouri Western State College. Summer was a member of the UMKC Law Review and graduated with distinction in the top 10% of her law class at UMKC. During law school she clerked for a civil litigation firm and for the Office of General Counsel for Region VII of the U.S. Department of Health and Human Services.

David Summers, J.D.
Disability Rights Attorney
David received his law degree from the University of Kansas and a Bachelor of Science degree in business from Kansas State University. During law school, David was a member of the Kansas Law Review and was a cofounder of The Kansas Journal of Law and Public Policy. David is licensed to practice law in Kansas and Missouri. Since 1991, David has been a litigation attorney, first at Stinson, Mag & Fizzell, and for the last 7 years as a shareholder in the law firm of Summers & Johnson, P.C. In his private practice, David primarily handled medical malpractice, products liability and personal injury cases. At Summers & Johnson, P.C., he also prosecuted claims under the ADA, handled disability claims in the administrative context, and advocated for individual patient’s rights in disputes with private health insurers and Medicaid.

Lane Williams, J.D.
Disability Rights Attorney
Lane received his law degree from the University of Kansas and his Bachelor of Arts degree in economics from Baker University. For two years during law school, Lane advised and represented inmates of Lansing State and Leavenworth Federal prisons as a member of the Defender Project. Lane is licensed to practice law in Kansas and Washington. He was a staff attorney for Kansas Legal Services in Pittsburg and Topeka for 11.5 years and was in private practice in Aberdeen, Washington, for 9 years before joining KAPS. At Kansas Legal Services, Lane specialized in public and private housing law and Social Security and SSI disability law. His areas of emphasis in private practice were land use, consumer and construction law.

Jennifer Conkling, J.D.
Disability Rights Advocate / Attorney
Jennifer received her law degree from Washburn University School of Law and a Bachelor of Science in Business Administration from Kansas State University. She is licensed to practice law in the State of Kansas. Jennifer was a member of the Washburn Law Journal and graduated from law school with Dean’s Honors. While in law school Jennifer clerked for a prominent criminal defense attorney in Topeka and served as the agenda clerk for the Kansas Senate.

KAPS has nearly tripled the number of attorneys on staff to represent the disability rights needs of Kansans

Julia Gilmore Gaughan, B.A.
Disability Rights Advocate
Julia received her Bachelor of Arts in American Studies from the University of Kansas. Julia brings with her four years experience in serving Kansans with developmental disabilities at Cottonwood Inc. in Lawrence, Ks, including being a direct-line support staff person, coordinator and supervisor. Julia also has over a year of experience as a personal assistant for a person with a physical disability. In addition to her work with people with disabilities, Julia has extensive community organizing experience through volunteer activities. While at KU, Julia served in the KU Student Senate as a Senator, was the Executive Co-Director for the Center for Community Outreach, and the Community Affairs Director. Julia received the Campanile Outstanding Senior Award while at KU, 2001 Outstanding Woman in Community Service Award and SUA Community Service Scholar Award in addition to graduating with departmental honors and an Honors diploma.

Lisa Jones, B.A.
Disability Rights Advocate
Lisa brings 15 years experience in advocating for people with disabilities through volunteer and professional employment. Prior to coming to KAPS, Lisa worked in case management for persons with mental illness at Valeo Behavioral Health Care, in Topeka, Ks, and as a staff supervisor of employees serving persons with developmental disabilities at Sheltered Living in Topeka, Ks. Lisa has been with KAPS as an Advocate/Investigator since September 2002. Lisa is a graduate of Washburn University with a Bachelor of Arts Degree in Political Science and a minor in Psychology, with additional focus on Human Services and Public Administration. While at Washburn, Lisa was a member of the Honor Society Phi Kappa Alpha, and was named to the Dean’s List, Honor Roll in Paralegal coursework, and “Who’s Who Among Students in American Colleges and Universities.”

Kathleen Wilson, M.S.
Disability Rights Advocate
Kathleen graduated from Washburn University with a Bachelor’s Degree in Education and received a Master of Science Degree from the University of Kansas, majoring in Special Education. She taught Special Education classes in Kansas elementary schools for 11 years and was a Supervisor of Special Education for the Allentown, Pennsylvania School District in the mid 1980’s. While living in Pennsylvania, she worked as a mental health advocate and as a Training Associate for Matrix Research Institute, a National Rehabilitation Research and Training Center. In addition, Kathleen has taught workshops and published materials on the utilization of the Social Security Work Incentives. Most recently, Kathleen was employed as Program Director for a Kansas community residential program for persons with developmental disabilities. Kathleen brings over 30 years of disability service and advocacy experience to her position at KAPS.

Melissa Lindsley, B.S.J. - Office Assistant
Melissa is a graduate from the University of Kansas William Allen White School of Journalism and Mass Communications. Melissa’s Bachelor of Science in Journalism degree has an emphasis in Strategic Communications, which includes studies in advertising, marketing, and public relations. Melissa also has experience working in the disabilities field as a Certified Nurse’s Aide (CNA) in a retirement community and as a volunteer counselor at a camp for children with disabilities. Melissa has also worked in the child care field.

KAPS gets over 2,000 calls a year that request service or information.

Important Supreme Court Decision, Tennessee v. Lane
Case Upholds Fundamental Rights Issues

In its recent decision in the case of Tennessee v. Lane, the Supreme Court held that States are not immune from suits for money damages under Title II of the Americans with Disabilities Act (ADA) when the State’s liability is based on physical barriers making courthouses inaccessible. This case is important because it sends a message to states about the rights of persons with disabilities to have access to public buildings, and allows money damages in these instances.
The case involved two plaintiffs, both of whom have paraplegia and were denied access to second-story Tennessee courtrooms. George Lane was a criminal defendant who, after being forced to crawl up and down the stairs for his first appearance, was arrested for refusing to crawl or be carried to the courtroom for a later appearance. Beverly Jones is a court reporter who was denied work because she could not access the second floor in her wheelchair. They sued under Title II of the ADA, which provides: “no qualified individual with a disability shall, by reason of such disability, be excluded from participation or denied the benefits of the services, programs or activities of a public entity.”

The Court acknowledged that Title II of the ADA enforces constitutional guarantees which, like access to the courts, are mandated both by equal protection and by the Due Process Clause of the Fourteenth Amendment. The Court held that, as to the fundamental right of access to the courts, Congress is empowered under section 5 of the Fourteenth Amendment to abrogate state immunity for Title II violations. In Lane, the court found that Congress met the standard of section 5 of the Fourteenth Amendment because the removal of barriers or money damages required by Title II are congruent and proportional to the well-documented injury of discrimination against persons with disabilities in the provision of public services.

KAPS believes the Court indicated its willingness to enforce Title II of the ADA whenever unconstitutional state action is involved. Justice Stevens wrote, “The decisions of other courts, too, document a pattern of unequal treatment in the administration of a wide range of public services, programs, or activities, including the penal system, public education and voting. Notably, these decisions also demonstrate a pattern of unconstitutional treatment in the administration of justice.”

There was a Kansas connection to this case, as Kansas Attorney General Phil Kline filed a brief with the Court in support of the ADA and the rights of persons with disabilities. The Court’s ruling was fairly similar to General Kline’s brief, which argued persons with disabilities have a right of access to courts and other institutions protected by fundamental rights.

VNS Cases Highlight Holes in State Medicaid Coverage

VNS (Vagus Nerve Stimulation) therapy is a seizure control treatment for people who experience a certain type of debilitating epileptic seizures which cannot be effectively controlled by traditional medications. The VNS device is similar to a heart pacemaker in size and electrically stimulates the vagus nerve to prevent debilitating seizures. The vagus nerve is derived from the Latin word meaning “wandering.” Thus, the vagus nerve wanders from the brain stem through organs in the neck, thorax and abdomen.

The State of Kansas Medicaid program provides coverage of VNS devices only to children ages 12-21 years, through the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program, known as KanBe Healthy. Medicaid does not provide VNS treatment for children under 12 or adults over age 21. Most state Medicaid programs and private insurance programs cover this treatment for persons of all ages.

KAPS was contacted by consumers who were having two different problems with this program. The first problem arose when an individual, who had received a VNS implant paid for by Medicaid, needed the device’s battery pack replaced, but Kansas Medicaid had refused to pay for the replacement. The second problem is that the State refuses to cover VNS implantation for youth under 12 or adults over 21. The first problem was fixed in the Kansas Legislature this year, and KAPS is still working to address the second problem.
Jessica’s Story
Brooke Seager contacted KAPS after the State Medicaid program refused to pay to replace her daughter Jessica’s VNS batteries. Jessica is a person with Epilepsy and a neurological disability who needs her VNS device to prevent debilitating seizures and to allow her to live a more independent life with dignity and respect. Jessica is now over 21, but Medicaid originally paid for the VNS implant when she was under 21. Without the replacement of these batteries, Jessica’s debilitating seizures are uncontrollable and severely impact her daily functioning.
During House Appropriations Committee hearings, Brooke Seager and KAPS educated members of the House Social Services Budget Committee about the problem that the State will pay for the VNS implantation, but not to replace the battery. This advocacy by KAPS along with the support of several key Legislators (including Representatives Landwehr, Ballard, Bethell, etc.) caused Medicaid to review their policy. Medicaid thankfully changed their policy and now cover VNS battery replacements for situations like Jessica’s. Jessica underwent her surgery to replace the batteries in her VNS on July 8, 2004, and Medicaid paid for the procedure.

“Jessica and I are so appreciative of the work of the House Appropriations Committee and the advocacy of KAPS to obtain this critical surgery for Jessica,” Brooke Seager said.

KAPS Finds Success in Special Education
One of KAPS’ largest service request areas is special education advocacy. KAPS advocates for students with disabilities in mediation or due process where significant non-compliance of providing appropriate educational services occurs.

KAPS worked with Families Together on a recent special education case involving educational services for a 7th grader attending middle school in the Kansas City area. This 13 year old boy, who has a learning disability, was experiencing difficulty with reading and other class work and had begun having behavior problems in school. His mother filed for a Due Process hearing with the school district claiming that her son had not been receiving FAPE (Free and Appropriate Public Education) and as a result he had not progressed in reading skills over a period of years. Also, reading was not adequately addressed in his IEP (Individualized Education Plan). The district claimed that his behavior was the contributing factor in his lack of progress.

The decision was made to try to resolve the issue with mediation. As a result of KAPS representation at mediation, the family was able to obtain an Independent Educational Evaluation at the district’s expense. The terms of the settlement direct the district to take all necessary steps to see that he is reading at grade level by the time he graduates from high school. In addition, the district will arrange for a Functional Behavioral Analysis to develop a Behavior Intervention Plan that uses positive behavior supports and appropriate behavior interventions.

Judge Rules Boy Can Play Baseball

On June 17, a federal judge in Wichita ruled the Scott City Recreation Commission must let a 7-year-old boy with disabilities play ball.

The commission had been blocking Matthew Whaley from joining a little league team in violation of his civil rights under the Americans with Disabilities Act of 1990 (ADA). Matthew experiences cerebral palsy and played T-ball when he was younger.

“He should just be allowed to play like any other kid. Just let him get out there and bat, hit, play and run,” said Kirk Lowry, litigation director for KAPS, who represented Matthew in the case.
Matthew’s mother, Jennifer Berends, contacted KAPS after the commission told her Matthew would not be allowed to play because his participation would fundamentally alter little league baseball, though Matthew requested no rule changes or accommodations.

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 then imposed a preliminary injunction ordering the commission to allow Matthew to join the team and play ball.

“Baseball is not just as American as apple pie, it’s also part of most kids’ American dream. Now, because of this ruling, Matthew gets to live that part of his dream,” said Rocky Nichols, executive director of KAPS. “And hopefully this will send a message that discrimination based on disability is not accepted in our state.”
The purpose of the ADA passed by Congress was to ensure full integration of people with disabilities into all of society, including recreation opportunities. This ruling is a precedent for Kansans with disabilities.

Thanks to this ruling and the legal representation provided by KAPS, Matthew was allowed to play little league, coach pitch baseball this summer with his older brother Travis.
“Little league baseball is not just about fielding skills, hitting skills and winning. It’s about character and teamwork and toughness. Judge Marten told Matthew he had probably learned more about toughness in his seven years than the rest of us have in our entire lives,” Lowry said.

Matthew recently received an autographed baseball from George Brett, a former Kansas City Royal and member of the Baseball Hall of Fame. Governor Kathleen Sebelius contacted Brett and asked if he would sign the ball in recognition of Matthew’s courage to stand up and fight for his rights.

Kansas’ Youth are ‘Outgrowing’ Funds

A growing concern in Kansas involves youth with disabilities who are aging out of the Medicaid ACIL (Attendant Care for Independent Living) program and the lack of appropriate replacement services provided to them after they age out of the program, which is a Kansas Medicaid program that cuts off after 21.
KAPS is providing representation to one such Kansan, Jeremie Brumley, who has aged out of the ACIL program and needs appropriate services. Jeremie is a 21-year-old individual with developmental disabilities living in his family home who became ineligible for ACIL services in October of 2003. Under the ACIL program, Jeremie was receiving 14 hours of skilled nursing care and necessary medical supplies to meet his significant medical needs. Transition planning was unsuccessful and KAPS is advocating for Jeremie to receive appropriate services through the MR/DD waiver, for which he is now eligible.
The local Community Developmental Disability Organization (CDDO) was offering very limited supportive home care and no skilled nursing. The CDDO’s offering was not adequate to safely meet Jeremie’s needs to live in his home in the community. Charitable funds were secured on an emergency basis as negotiations proceeded with the CDDO and the State of Kansas Social and Rehabilitation Services (SRS). At one point during the negotiations the CDDO Associate Director filed a complaint with Adult Protective Services that Jeremie was being neglected in an apparent attempt to pressure his guardians into signing the insufficient plan of care. The complaint was found to be unconfirmed.
After much negotiation, a plan of care was approved for self-directed services in April of 2004; six months after the young man lost his ACIL eligibility. However, SRS has refused to reimburse the CDDO for services delivered under the signed plan of care and they are challenging Jeremie’s right to select his own personal assistants. SRS’s actions have resulted in Jeremie not receiving the appropriate services as detailed in his plan of care. KAPS has filed an appeal for fair hearing on this case to advocate for Jeremie’s right to direct his own care.

KAPS Helps Woman Leave Reported Abusive Home

Imagine a woman who has been the victim of over 20 years of sexual and emotional abuse perpetrated by her guardian, who was also her therapist. Sound like something from a gut-wrenching Hollywood movie? It’s actually the story of a Kansas woman who KAPS is representing.
In response to a recent complaint by the Kansas Attorney General’s office, KAPS recently investigated a case where a woman with mental illness (whom we’ll call “Pam” to protect her identity) reported that her guardian, who was also her “therapist,” had abused her sexually and emotionally during the 20+ years she lived in the guardian’s therapeutic group home.
The guardian reportedly billed Medicaid for the therapy services, and therefore has been under investigation by the Office of Inspector General (OIG) since 2000. OIG, through investigative subpoena, obtained over 30 video tapes from the guardian’s private bedroom. While investigating Pam’s case, KAPS obtained powerful videotape evidence of these so-called “therapy” sessions which vividly showed the sexual and emotional abuse perpetrated by the guardian.
KAPS’ investigation included cooperation with the Kansas Attorney General, Office of the General Counsel for OIG/HHS in Washington, DC, special investigators of OIG/HHS in Wichita and Kansas City, the assistant attorney general for the Kansas Board of Nursing and local law enforcement. These agencies had been investigating these allegations since 2000. In 2000, the guardian surrendered his license to practice social work in Kansas; however, Pam still resided with the guardian in this abusive and dangerous environment. KAPS only recently found out about this case, and took immediate action.
Given this evidence of abuse, KAPS filed and obtained an emergency preliminary order suspending the guardian’s authority. KAPS then used its access authority under federal law to enter the group home and help Pam move out. To ease the transition from the abusive situation, a KAPS advocate helped Pam obtain housing in a new city. Now she is receiving appropriate health care, support, and services, including restoration of her SSI and back pay on her SSI. The Court appointed a temporary guardian for Pam, and a trial date has been set to permanently remove her guardian. KAPS is representing Pam in ongoing litigation to protect her rights.

When you vote Nov. 2, report access issue

KAPS is seeking volunteers to report on their experiences as voters in the 2004 General Election. Filling out the survey and being a “tester” only takes a minute, and you can help improve polling place accessibility. State and Federal laws require that all Kansas polling places be accessible to Kansans with disabilities. By now all 105 Counties should have corrected accessibility issues so that no Kansas voter is denied access to their local voting site. Filling out the access survey will help find out: 1) is your polling place accessible? and, 2) can voters with disabilities independently cast a private ballot?
KAPS wants you and other voters to report on polling place access, the ability of voters with disabilities to vote privately and independently (without assistance), and any problems encountered while exercising your right to vote. Unless you report your voting experience, the problems you and others encounter cannot be corrected. KAPS wants to hear about both positive and problem voting experiences.
Being a Voting Tester is as easy as 1-2-3...
1. Get the accessibility survey from our web site at www.ksadv.org or contact us by phone
(1-877-776-1541) or e-mail (voterrights@ksadv.org).
2. Go vote at your normal polling place, and complete the Volunteer Tester Report Form.
3. Mail, fax or e-mail your report to KAPS.
The more reports that KAPS receives the better understanding KAPS will have of the experiences of Kansas voters with disabilities.

KAPS Helps Woman with Housing

One of KAPS’ priorities is to advocate for people when their rights under the Fair Housing Act are being obstructed because of their disability.

A New Name for KAPS Disability Rights Center of Kansas

Executive Director’s Report
By: Rocky Nichols
Thanks to the successful completion of the agency-wide reorganization (see reorganization story), the new KAPS is a much different organization than the KAPS that most persons with disabilities are familiar with. Proof of this fact includes the successful reorganization, the nearly 80% new staff, new Board leadership, new management, and the dramatic 10-fold increase in our legal representation cases. Because KAPS is, for all intents and purposes, a new organization with a new focus, we are changing our name.
The Board of Directors recently approved changing our name to the Disability Rights Center of Kansas. We will officially change our name later in the year, and will coordinate the name change with our move to a more accessible location in Topeka. This will help minimize any duplicate costs that go along with making the move to a new address while adopting a new name. We are currently creating an intensive communications and marketing plan for our new name. In the meantime, you may notice us answering the phone or corresponding with you as KAPS-the Disability Rights Center, which will be used in the interim to get consumers and partner agencies acclimated to the new name.
The most important reason for the name change is the new name truly reflects our new focus. Our new focus is on providing direct advocacy and legal representation for the disability rights needs of Kansans with disabilities. Though we will continue to be somewhat involved in public policy advocacy, most all of our resources are now dedicated to direct advocacy and legal representation. We prioritized our existing budget to nearly triple the number of attorneys at KAPS.
Our current caseload reflects our new focus on disability rights advocacy. Though the reorganization was only completed in April and we have only been fully staffed since May, KAPS has still increased our number of disability rights legal representation cases by 10 times (jumping from four litigation cases for the whole prior fiscal year to 40 cases through the first 10 months of the current fiscal year). However, our focus is still on proactively solving disability rights issues before litigation is needed. A lawsuit is not the first or best answer. Our focus on proactive advocacy can be found in the 278 cases where we provided advocacy representation or self-advocacy assistance for the disability rights needs of Kansans, short of litigation. These 278 advocacy cases were during the first 10 months of this fiscal year, whereas we completed 243 advocacy cases during the entire previous fiscal year. At this pace, we will provide advocacy to 335 Kansans with disabilities by the end of this fiscal year, which will be a 38% increase. Year to date, we have also provided 526 information/referrals (I&R) and investigated 10 abuse/neglect complaints for Kansans with disabilities, compared to 623 I&R’s and 17 abuse/neglect complaints last year. Although we have received more calls this year, we actually have less I&R cases, because we have taken on more of those calls as advocacy or litigation cases.
Frankly, our biggest challenge now is managing our 318 active advocacy and litigation cases while still being able to deal with the calls we receive every day seeking our help. Because our resources are limited, we are forced to turn down advocacy or legal representation to far more Kansans than those whose case we accept. Though it is difficult to turn people down, it is necessary to effectively serve the disability rights needs of our current customers. Our litigation and advocacy cases are often incredibly complex and time consuming, which further limits the number of cases we can take on. Therefore, we decide what cases to accept by our priorities and case selection criteria (see www.ksadv.org for this information).
KAPS implemented the comprehensive reorganization and other changes based on the feedback the Board and I received during the Listening Tour and surveys conducted last year. You sent us an incredibly focused and powerful message. You said that you wanted KAPS to be a more customer-focused, responsive and effective advocate for the disability rights needs of Kansans with disabilities. Overwhelmingly, 91% of you reported that you wanted KAPS to either implement “moderate changes” or under go a “massive overhaul” (with the majority voting for massive overhaul).
I hope the extensiveness of our reorganization, our nearly 80% new staff, new management team, 10-fold increase in legal representation, and 38% increase in advocacy cases shows that we took your feedback seriously and that we are trying to be a better advocate for the disability rights needs of Kansans.
KAPS’ Litigation and Advocacy Cases Skyrocket:
10 Times more Litigation Cases...
•   40 cases for the first 10 months of Federal Fiscal Year (FFY) 2004
•   Only 4 cases throughout FFY 2003
38% Increase in Advocacy/Self-Advocacy Cases...
•   278 advocacy cases for the first 10 months of FFY 2004 (At this pace, we will serve 335 by the end of the year, a 38% increase)
•   243 advocacy cases in all of FFY 2003
KAPS 2004 Policy Work
As you can see throughout this newsletter, KAPS has increased its focus on legal and advocacy representation for disability rights (nearly tripling the number of attorneys, a 10-fold increase in legal representation, etc.). Though legal and advocacy representation will continue to be our main focus, KAPS has also increased its role in public policy advocacy. This was in response to feedback from the disability community.
Voting Accessibility
This has been a big year for the voting rights of Kansans with disabilities. Now, thanks to enactment of SB 166, Kansas law guarantees that polling places must be accessible to Kansans with disabilities. The old law said that polling places had to be “made accessible in the foreseeable future.” The old law was passed in 1977! KAPS argued that the foreseeable future had come and gone,   that the state had 27 years to make polling places accessible, and state law should be changed. SB 166 changed that outdated 1977 law by granting rights in state law to persons with disabilities. Now state law says that all polling places must be accessible on election day to persons with disabilities. Election officials can make polling places accessible by either temporary or permanent means, but the polling place must be accessible. KAPS encourages you to take advantage of your new voting rights by registering to vote and casting your ballot. Registration and advance ballot applications are available at
www.kssos.org/elections/elections_registration.html.
Community Services
One of KAPS’ most important policy and legal rights issues is the right of persons with disabilities who use long-term care services to receive these services in the community rather than in nursing facilities, institutions or other restrictive settings. Kansas continues to have waiting lists for the programs that enable long-term care services to be provided in the community. KAPS, as well as many other disability advocates, requested that the Kansas Legislature budget the resources to serve all of the individuals waiting for those community services. Enough funding was not provided to eliminate the waiting lists, but the Legislature and Governor Kathleen Sebelius did add $16.25 million (all funds) to take some Kansans with disabilities off the waiting list and into services. $7.5 million was added to the Developmental Disability Waiver, $7.5 million to the Physical Disability Waiver and $1.25 million to the Head Injury Waiver.
Regarding the Head Injury (HI) Waiver, one exciting change is that the program will now serve persons up to age 65. Until now, only individuals under the age of 55 were eligible for services through HI Waiver. However, the Frail Elderly Waiver does not start until age 65, creating a 10 year gap. KAPS and several Legislators advocated to increase the age limit on the HI Waiver to 65. Thankfully, the Dept. of Social and Rehabilitation Services believed this was a good enough idea that they used administrative means to increase the age limit to 65 for the HI waiver.
Death Penalty & Cognitive Disability
During the 2003 summer interim the Kansas Judicial Council drafted potential legislation that would have prevented persons with significant cognitive disabilities (including those with severe head injuries) from being executed under the death penalty. The proposal would have implemented the U.S. Supreme Court’s decision in the Atkins v. Virginia case. In the Atkins decision the Court determined that executing persons with mental retardation (the most well known type of cognitive disability) is “cruel and unusual punishment” and is prohibited under the U.S. Constitution. Because the Atkins decision spoke directly to intellectual functioning and cognitive disability, the Kansas Judicial Council proposed to introduce a bill that protects persons with cognitive disability from being executed by the State. Unfortunately, the Judicial Council’s bill did not pass in the Legislature, but it has been assigned for interim study. Expect to see this issue again in the 2005 session.
Workforce Development
The Statewide Independent Living Council of Kansas (SILCK), the Kansas Commission on Disability Concerns (KCDC) and KAPS developed a joint position paper on the Kansas workforce development system. The position paper reflects the problems faced by individuals with disabilities who are seeking work through workforce development centers. The paper concludes that workforce development centers are not doing a good job of meeting the needs of job seekers with disabilities, and makes recommendations to improve the system. With the Governor moving the workforce development centers to the Department of Commerce, the effectiveness of these centers and how they serve Kansans with disabilities will get a welcome, fresh look. The disability community looks forward to working with the Department of Commerce and Lt. Governor John Moore to make meaningful improvements in this area.
Special Education Accountability & Reform
As most Kansans know, the Legislature has been grappling with how to adequately fund public K-12 education. Though school finance is an important topic, holding schools accountable for the special education services they provide to students with disabilities is also a critical issue. KAPS has been working with disability rights and special education advocates to identify proactive policy solutions to help ensure that the rights guaranteed under the federal Individuals with Disabilities Education Act become a reality for Kansas Students.

Special Education accountability is starting to be noticed in the Kansas Legislature, as it was assigned to the Legislative Education Planning Committee for interim study.

Ideas? Stories?
If you have ideas or suggestions about stories you’d like to see in future editions of this newsletter, please contact KAPS at 877-776-1541 or by e-mail at info@ksadv.org.

The following federal funding partners shared in the cost of producing this brochure: The Administration on Developmental Disabilities (grants #G-0401KSPA17 and G-0303KSVOTP); the Center for Mental Health Services (grant #SMX209700F); the Rehabilitation Services Administration (grant #H240A040017C and # H343A030017); the Social Security Administration (grant #17 A 2019 7 03); Health & Human Services, Health Resources and Services Administration (grant #1H83MC01557-01-00). These contents are solely the responsibility of KAPS 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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