DRC Newsletter September 2007 DRC Newsletter, Volume 6 September 2007 DRC Celebrates 30 years Thirty years ago the first Apple personal computers were sold in, Star Wars was battling Smokey and the Bandit for the top movie slot at the box office, “Gonna Fly Now” – the theme song to the movie “Rocky” toped the Billboard music charts and DRC (then known as KAPS - Kansas Advocacy and Protective Services) was founded as the official protection and advocacy system for Kansas. On June 26, 2007, Governor Kathleen Sebelius helped kick off DRC’s year-long celebration of its 30th Anniversary with a speech and proclamation at DRC headquarters in Topeka. Speaking before a standing room only crowd, Sebelius noted that Kansas is a state founded on the rights of the individual and that DRC continues that proud tradition in its important work advocating for the rights of individual Kansans with disabilities. DRC is planning a year full of events to celebrate its 30th Anniversary. This is a major undertaking of the Board of Directors of DRC. At the kick-off event DRC announced some of its immediate plans to celebrate the 30th Anniversary, including producing a DVD video about DRC, brochures and reports about DRC’s 30th Anniversary, multiple outreach efforts across the state and a signature culmination event. Check back to DRC’s web site (www.drckansas.org) for updated details on our efforts to celebrate DRC’s 30th Anniversary. DRC Staff September 2007 30YEARS .. In Memory Michael Larkin 10/30/1970-12/08/2006 IN THIS ISSUE Seclusion and Restraint.....4 Legislative Report..................6 Open Letter from DRC............8 DRC and its staff express their sincere sympathy to Michael’s family and friends for their loss. DRC was honored to be a recipient of memorials contributed in Michael’s name. DRC extends its thanks to Michael’s many friends and family for their generous contributions in honor of Michael. Disability Rights Center of Kansas 635 SW Harrison Ave., Ste. 100 Topeka, KS 66603 Phone (Voice/TDD): 785-273-9661 or 877-776-1541 (toll free) Dedicated TDD: 877.335.3725 E-mail: info@drckansas.org DRC Newsletter September 2007 Victory For Mental Health Facility Residents The importance of DRC’s investigative and legal access authority are made stunningly clear in the case of M.F. (abbreviated to protect the identity of the victim), a resident of the Indian Trails Mental Health Living Center, Inc.. In July 2004 M.F. was assaulted and raped by M.M., a fellow resident of the facility. What makes this case compelling is the story of how the victim (M.F.) and his attacker (M.M.), a person with a 30 year history of inappropriate, non consensual sexual conduct with other low functioning men, came to live in this facility, and the facilities lack of oversight to prevent the sexual assault. This case is an example of why systemic change is needed in the mental health service delivery system. M.F. was a 12 year resident of Indian Trails a “NFMH” (Nursing Facility for Mental Health). Six months before the attack, M.M., the assailant, was accepted as a Indian Trails resident when discharged from a state mental health hospital. Indian Trails management had sought additional residents to maintain a full facility. M.M. had spent most of the prior 30 years at a state hospital. When MM was discharged from a state hospital, Indian Trail’s staff was informed about M.M.’s sexual predatory behaviors including a 30 year institutional history of sexually aggressive behavior towards other men. Indian Trails took no special precautions to monitor or control him. The records in the possession of Indian Trails contained extensive information provided by the state mental health hospital describing M.M.’s long standing issues with behaviors; a “…tendency toward inappropriate sexual behavior with low functioning male peers (this over a 30 year span), impulsive sexual behaviors, claims of rape and killing, threats to staff, and others indicating poor social skills.” No effort was made by Indian Trails to inform the other residents or their guardians of M.M.’s dangerous behaviors. Indian Trails did nothing to protect the other residents from M.M. DRC first became aware of the rape of M.F. during a regular review of the Kansas Department of Aging (KDOA) facility licensing survey report dated September 2004. After the incident, Indian Trails, without contacting M.M.’s guardian, immediately discharged M.M. without a discharge plan and dumped him at a Topeka hotel. They left him unsupervised in a hotel for two days before he was finally returned to a state mental health hospital. M.F. sued Indian Trails Mental Health Living Center, Inc. under theories of negligence for 1) failure to protect M.F. from the assault and 2) failure to control the behavior of M.M. so that the assault did not happen. DRC attorney’s provided legal representation to M.F. in the litigation to help obtain justice for the terrible sexual assault he endured. The case has been settled in favor of MF for an undisclosed amount. Providence Living Center, Inc formerly Indian Trails Mental Health Living Center, Systemic Change is Needed The NFMHs receive $10.4 million from the state to serve 600 Kansans with mental illness. NFMHs are responsible to provide basic residential services, the mental health and medical care. DRC receives numerous complaints from NFMH residents each year. The Indian Trails case is also an example of some terrible abuses that occur at these facilities and is one reason why DRC has advocated for eliminating the inferior service of NFMHs and instead creating community-based services and regional capacity to better serve Kansans with mental illness. Kansas is the only state in the nation with NFMH’s. The service is entirely funded by state tax dollars. There is huge pressure for NFMHs to keep their beds full. The former chief administrator of Indian Trails told the Topeka Capital Journal “ We have to keep the beds filled to keep the doors open.” If the NFMH service was eliminated, the state could share the cost with federal Medicaid and other dollars, thereby decreasing the burden on state taxpayer and increasing the level of care to Kansans with mental illness. September 2007 DRC Newsletter Edward Rucker, Director of Policy and Outreach DRC would like to introduce Edward Rucker, Director of Policy and Outreach. Ed comes to DRC after a term as the County Counselor in Jackson County Missouri. From 1978 to 2004 Ed was an attorney in private practice. He holds a Juris Doctor degree from the University of Missouri at Kansas City (UMKC), a Bachelor of Arts in Sociology from UMKC, and is a student in the Interdisciplinary PhD program concentrating in Political Science and Economics. Ed has been instrumental in changes in his community as well. He worked hard to help pass Missouri’s charter public school act. As President of the Board of Academie Lafayette he helped create Missouri’s first charter public school. He served in that position during the year the school organized, drafted its charter, and found a building; and for the first three years of operation. His three children all attended the school. During the 2003-2004 year Ed taught Political Science at Baker University. He has served on the Board of Directors of Truman Medical Center as well as the Sentencing and Public Defender Commissions. Executive Assistant, Tabitha Johnson Disability Rights Center of Kansas would like to introduce Tabitha Johnson. Tabitha is DRC’s new Executive Assistant. Tabitha provides both administrative support to members of the Leadership Team as well as DRC advocates and attorneys. Tabitha has lived in Topeka for 8 years. Tabitha previously worked as a legal assistant in a local law firm, assisting the firm and people with disabilities in the area of Social Security Disability claims and appeals. She aided and assisted many people with disabilities to obtain Social Security Disability Benefits. Tabitha also previously worked in advertising design at the Topeka Capital Journal. She has done volunteer work at charity events to benefit CASA and the Children’s Miracle Network. A.T. FACT SHEETS Included in this mailing are a series of Fact Sheets on assistive technology (AT) issues. Topics covered in the Fact Sheets include your right under the AT Lemon Law, AT and special education law, as well as AT and Vocational Rehabilitation service. AT includes many different types of devices and services that help people with disabilities participate more fully in everyday life. Such assistive technology devices can be as simple as a magnifying glass or as sophisticated as speech board or a computer with a screen reader. Assistive Technology can make a huge difference in a person’s life, including enabling gainful private employment, expanding independence, or increasing personal dignity or respect. Also included in the AT Vocational Rehabilitation Fact Sheet is information about the Client Assistance Program (CAP), which can help provide legally based advocacy to Kansans with disabilities who are accessing services funded under the Rehabilitation Act, including Vocational Rehabilitation, Independent Living Center services. DRC wants everyone to have all the appropriate Assistive Technology they need for an independent and successful life. DRC hopes that the Fact Sheets on the different AT issues will help provide you with important tips and useful information on these important laws. These fact sheets are not legal advice, please call DRC with questions about how to apply these laws and rights your situation. “DRC is eager to help consumers with AT issues in a variety of services from information and referral to advocacy to litigation if that becomes necessary.” DRC Director of Policy and Outreach, Edward Rucker commented. “Too often Assistive Technology is a promise only half kept and we hope to help address that,” Rucker said. DRC’s goal is to make each newsletter understandable by and useful to the general public. Please forward any suggestions for improvements to DRC. The newsletter is not intended to provide specific legal advice. Please contact any attorney for advice or assistance based on your particular situation. State Board of Education acts on Seclusion and Restraint Board Moves forward with Guidelines On February 13, 2007, the Kansas Board of Education held a public hearing on regulations to control the use of Seclusion and Restraint tactics in Kansas public schools. The hearing room was filled with parents and advocates for children with disabilities. DRC wants to thank all those who attended. Of the 30 people who personally testified, twenty four spoke in support of adopting binding regulations. Those who testified in support included parents, guardians, experts from universities, and advocates for children with disabilities. Though the State Board did not adopt binding regulations, they did pass new guidelines patterned after DRC’s proposal. The difference is that the guidelines establish a standard for schools to voluntarily follow, while regulations enact minimum requirements schools must follow. DRC Executive Director Rocky Nichols urged the Board of Education to create regulations to ensure that seclusion and restraint is not used where another less restrictive intervention could be implemented. “Seclusion and restraint should be safety interventions of last resort when the safety of the child or other persons is directly threatened,” Nichols said. Supporters of binding regulations argued that an enforceable policy is needed for these dangerous tactics. The current policy on the use of seclusion and restraint (S/R) in schools completely lacks clear or enforceable standards, training, accountability and reporting on the use of these dangerous tactics. In short, the current policy is to not have an enforceable policy. Students with disabilities - who are perhaps the most at risk of being the victims of these tactics - are exposed to the use of seclusion and restraint without any rules or boundaries. This also means that teachers and administrators are asked to deal with difficult and emotional situations without any rules to follow. Though many advocacy groups were disappointed that the State Board of Education has thus far only passed guidelines, the fact that the Board has adopted a standard – albeit a non- binding standard – does give hope for the future. Having these guidelines hopefully sends a message to schools that this is an important issue and they have to do a better job of regulating themselves. If not, pressure will continue to build for the State Board or the Kansas Legislature to regulate these dangerous tactics. The Protection and Advocacy System for Kansas September 2007 DRC Newsletter Seclusion and Restraint Guidelines Outline of Guidelines • Seclusion Rooms – Sets as a guideline that the use of seclusion rooms should be spelled out in the child’s Individualized Education Plan (IEP) OR should be used only when the student poses a danger to them self or others. • Restraint – Sets as a guideline that a school employee should use physical restraint on a child with a disability only if the child’s behavior presents an imminent risk of harm or the child is involved in an altercation. • Staff training should be provided on using seclusion and restraint. • A seclusion room or physical restraint should not be used for discipline, punishment, or the convenience of staff. • A child should not be placed in a seclusion room unless other less restrictive behavior intervention strategies have been implemented but were ineffective. • Requires reporting and statistics to be gathered by schools and reported to the State Department of Education on the use of seclusion and restraint. Please go to www.drckansas.org and click on publications for a copy of the complete guidelines How they Voted on Seclusion and Restrain in Kansas Schools: Voted “YES” to Guidelines (which was a “No” vote on binding regulations) - Sue Gamble, Carol Rupe, Janet Waugh, Sally Cauble, Jana Shaver, and Bill Wagnon Voted “NO” on guidelines (which was “Yes” on binding regulations) - Ken Willard, John Bacon and Kathy Martin. Steve Abrams abstained. This is important to Kansas parents * A Kansas parent reported that their child was locked in a dog kennel as a form of seclusion * A Kansas Parent reported that their child was put in a restroom for several hours a day as a form of seclusion. * A Kansas parent reported that their child was restrained by a school staff member laying on them with a wrestling mat. * Kansas parents report that schools consistently do NOT follow what is in their child’s agreed upon IEP regarding the use of seclusion and restraint. * Kansas parents have no way to make formal complaints about the use of seclusion or restraint against a child. 2007 Legislative Report One of DRC’s core service areas is public policy advocacy. In 2007 DRC staff members were involved in conducting research work, coalition building and educating policy makers through testimony. Sometimes the effort was to simply hold the line against further damage to the rights of citizens with disabilities. Other times we and others in the disability community were able to make some progress. Here is a short summary, by subject, of some legislation involving people with disabilities in the 2007 Kansas Legislature: Voting Bills: HB2019, HB2281, SB 65, SB159 DRC expressed concerns about proposals contained in the above bills that would have placed a new burden on people with disabilities regarding advance voting. HB 2281/SB 159 required a voter with a disability fill out additional paperwork when they are having another person deliver the ballot to the election authority. The person doing the favor and delivering the ballot for the person must also fill out additional information. The problem is that HB 2281/SB 159 puts a new requirement on the back of a voter with a disability. Many times people with disabilities vote via advance ballots due to lack of transportation. In order to qualify for a permanent advance ballots, a voter must have a permanent impairment or disability. DRC proposed that before the state places new burdens and requirements on people with disabilities who vote in advance, the state should first reduce a burden by paying for the return postage on advance ballots. Many people with disabilities are forced to live in poverty because Social Security or Medicaid places stringent limits on income and assets for certain benefits. DRC’s proposal would have reduced a burden on people with disabilities and refocused the debate on breaking down barriers to voting instead of adding new barriers. In the end, none of the proposals to add new requirements to the advance voting ballot passed, which was a positive result for people with disabilities. Additionally, DRC’s proposals for paying return postage on advance ballots received serious consideration by the Legislature. Autism Task Force SB138 Passed and signed into law This bill created a new Autism Task Force to tackle challenges in several areas, including development of a consensus statement for best practice methods of treating children with autism, and investigation of the health insurance problems faced by families of children with autism. DRC will monitor the work of the task force and help where we can. Long Term Care - SB346 This act establishes appropriate long- term care standards for the elderly and people with disabilities in Kansas; prescribing long-term care principles for future policy development. The Long Term Care Bill Of Rights provides each and every Kansan with the opportunity to choose the long term care option that meets their lifestyle and abilities. Although it passed in the Senate it was not heard in the House. Hearing Aid Coverage - HB 2125 DRC testified in support of HB 2125, a bill to require health insurance policies to cover the cost of hearing aids. As necessary as they are to folks who need them, hearing aids are ridiculously expensive. DRC argued that if hearing loss is a medical condition, which it is, it should be covered by medical insurance just like an artificial hip. The flaw in Kansas law is partially a matter of definition. A hearing aid is a mechanical device for the alleviation of a serious medical condition. Hearing loss is a public as well as a private health issue. The current policy creates a significant risk that an individual with hearing loss will experience greater stress and adverse impacts on their health, and consequently need more medical care. Guardianship – HB2176 – Withholding and Withdraw of Health Care DRC testified in support of HB 2176 which sought to rebalance the powers of a guardian by establishing a rule for the withdrawal or withholding of health care for people with disabilities, including nutrition and water. This bill sought to establish clear due process rights for people with disabilities that shift the focus of the proceeding to the wishes of the individual, and giving the court discretion in making its decision on all of the relevant facts. The bill was heard in the House Judiciary Committee but not advanced. Executive Director Rocky Nichols at press conference promoting DRC public policy issues The state has a compelling interest in preserving the health, welfare, safety and life of its citizens. This state interest must include all people with disabilities, regardless of their “label” or “condition.” That must include people who are sustained by “artificial means.” The current law puts at risk all wards who have disabilities who are “in a persistent vegetative state or is suffering from an illness or other medical condition for which further treatment, other than for the relief of pain, would not likely prolong the life of the ward other than by artificial means, nor would be likely to restore to the ward any significant degree of capabilities beyond those the ward currently possesses.” This very broad definition can basically include any person with a disability who uses on any type of “artificial means” for day to day living. For example, an individual who experiences a cervical spine injury in vertebras 1, 2 or 3 may require artificial respiration to breathe. Or, a person with advanced kidney disease might require kidney dialysis. Some with disabilities use an iron lung during part of the day to breath. Many persons with significant disabilities utilize feeding tubes to eat. None of these conditions by themselves are an indication that the person is terminally ill, or waiting on death’s door. However they are all “artificial means” and could subject a person to having medical care withheld or withdrawn. DRC supported the bill because it attempts to respect the constitutional right to refuse medical care while at the same time ensuring the fullest measure of due process before the state sanctions withdrawal of necessary medical care, including food or water, which leads to the death of a person with a disability who has a guardian. Guardian’s Conflicts of Interest - HB 2509 HB 2509 was a bill that addressed the problem of conflicts of interests in guardianship situations. Based on flaws in the Kansas Law brought into sharp focus by the Kaufman case, it was drafted and introduced at the request of DRC. Arlan Kaufman was guardian, conservator, therapist, service provider and landlord to some of his wards. This gave him total control over their lives as his tenants, patients and consumers. This bill which did not pass, would have prevented any unrelated person being appointed a guardian or conservator if the proposed guardian conservator: 1. Provides services to the ward for a fee, except for those fees approved by the court for carrying out the guardianship or the stipend from the Kansas guardianship program 2. Is a creditor of the ward 3. Is employed by a treatment/ residential facility where the ward lives or receives treatment 4. Has any other conflicts of interest with the ward’s interests. This proposed act further required the guardian remain independent from all service providers so that the guardian can challenge inappropriate or poorly delivered services and advocate vigorously on behalf of the ward. The guardian may not employ the guardian’s friends or family to provide services for a fee unless there is no alternative and such an arrangement is disclosed to the Court. The guardian must assist the ward in petitioning the court for limitation or termination of the guardianship when the ward no longer needs a guardian and in filing a petition for restoration of rights upon request of the ward. Without these necessary changes, wards in Kansas continue to be at risk of negligent or ill-intentioned guardians every day. Death Penalty and Cognitive Disability - HB 2396 HB 2396 attempts to address the unfairness of the imposition of the death penalty on a person with cognitive disability was requested by DRC. This bill which did not pass, would have prohibited the execution of any person with a cognitive disability at the time of the commission of the capital crime. ‘‘Cognitive disability’’ in the bill means “a disability characterized by significant limitations both in intellectual functioning and deficits in adaptive behavior as expressed in conceptual, social and practical adaptive skills.” The decision to base the definition of “cognitive disability” on the nationally accepted definition for mental retardation developed by AAMR is important because the definition of cognitive disability is not limited by age of onset. The issue is whether the person’s disability creates significant intellectual functioning and adaptive behavior deficits. When it does, the death penalty becomes a “cruel and unusual punishment.” If a person has significant cognitive disability then they do not have the ability to form intent, or act with premeditation and deliberation. “Capital punishment can serve as a deterrent only when murder is the result of premeditation and deliberation.” Atkins, 536 U.S. at 319. The following federal funding partners shared in the cost of producing this brochure: The Administration on Developmental Disabilities (grants #G- 0501KSPA17 and G-0403KSVOTP); the Center for Mental Health Services (grant #SMX209700-05); the Rehabilitation Services Administration (grants #H240A050017, #H343A050017 and #H161A050017B); 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. September 2007 DRC Newsletter Dear Friends in the Disability Community, From June 2007 through June 2008 DRC will be celebrating its 30th anniversary. As an agency we are very excited about this opportunity. As you can see from the article on the front page, we have many great opportunities in the works to celebrate this Anniversary. We plan on being extremely busy over the next year. However, we are looking for more ways to reach out to Kansans with disabilities and the disability community. Improving and refocusing our outreach effort is one of the main goals of this year- long celebration. As part of our year-long celebration, we would like to work with as many organizations and groups as possible. Some examples of partnerships that we want to form as part of this 30th Anniversary celebration include: speaking at annual meetings, presenting workshops at conferences, and having informational booths at events involving people with disabilities. Our presentations can be tailored to your disability organization’s need or the purpose of your event. DRC has dramatically improved its outreach and training outcomes since the 2004 reorganization, increasing the number of trainings from 6 in 2002 to 73 in 2006 and increasing the number of people trained from 203 in 2002 to 3710 in 2006. DRC wants to continue to expand these outreach efforts as part of the 30th Anniversary celebration. If you are affiliated with a disability organization that is holding an event, please contact Ed Rucker, Director of Policy and Outreach at DRC. We want to know about the event, because we may want to present or be at the event. DRC has conducted numerous workshops and trainings throughout Kansas regarding disability rights and public policy issues. Please contact us at info@drckansas.org or call us toll free at 1-877- 776-1541 Thank you! Rocky Nichols Curtis Sneden Executive Director President, DRC Board of Directors Photo Courtesy of Topeka Capital Journal - Governor Kathleen Sebelius speaking at DRC 30th Anniversary Kickoff event. DRC Wants Your Input on 2008 Priorities The Disability Rights Center of Kansas (DRC) wants you … to fill out the enclosed survey and provide your input on the proposed 2008 priorities. The DRC priorities are extremely important. These priorities directly impact the types of cases that DRC will accept and the types of advocacy that DRC can provide. The enclosed survey outlines DRC’s proposed priorities and asks for your input to rank the relative importance of each. You are also asked to please rank the importance of DRC’s different advocacy services (direct representation, public policy and trainings). Recently, DRC has focused more resources on direct representation. As a result, DRC tripled the number of Kansans served with its legally-based advocacy. The survey results will be considered by the DRC Board in deciding our 2008 Priorities. Please return your survey no later than October 19, 2007 in the enclosed postage paid envelope.