On Target Disability Rights North Carolina Champions for Equality and Justice Volume 18 • Spring 2014 170 Attend First Annual Conference On April 9, nearly 170 individuals joined the staff of Disability Rights NC for its first annual conference on disability advocacy. Attendees represented many different types of disabilities and included self-advocates, parents, caretakers, guardians, providers, state agency representatives, local government representatives, disability rights advocates, educators, lawyers, and medical professionals. The conference kicked off with an opening session featuring Michael Bailey, a past president of the National Disability Rights Network and long-time disability rights advocate from Oregon. Michael addressed the importance of the protection and advocacy system in the disability rights movement and shared a few personal stories as the parent of a daughter with Down Syndrome. After lunch, Lois Curtis – better known as “L.C.”, the lead plaintiff in the Olmstead case – and her support team talked about Lois’s life in the community after 20 years in institutions. Throughout the day, Lois’s artwork was available to view and purchase, and Lois drew personal pictures for anyone willing to sit with her for a minute or two. During breakout sessions, the attorneys and advocates at Disability Rights NC, as well as community resource gurus Lula Johnson and Folashade Omisore, shared their knowledge and advocacy tips on a variety of topics such as voting, service animals, alternatives to guardianship, employment for people with disabilities, special education, community resources, and healthcare under the Affordable Care Act. The entire Investigations and Monitoring Unit gave insight into what they do on a daily basis to ensure that individuals with disabilities living in facilities in North Carolina are safe and living with dignity. And Disability Rights NC’s policy staff and attorneys presented their thoughts on Medicaid reform and the State’s implementation of the Olmstead decision. We appreciate the support of our volunteers who gave their time during the conference and did whatever was needed: Ashley Lindsay, Neil O’Rourke, Renee Palmer, Andrew Realon, and Jennifer Wyatt. And, we thank our sponsors whose support enabled us to provide registration scholarships to self-advocates with limited incomes and to defray the administrative costs of the conference so that Disability Rights NC can give as much direct advocacy as possible to the people with disabilities who call every day for assistance. Thank you to everyone who attended the first annual Disability Advocacy Conference! “Please do this annually – this conference is invaluable.” “The manual and thumb drive with handouts are wonderful. This will ensure a far wider reach of important valuable information to people that need it. Thanks!!” “This was an excellent conference. Very worthwhile.” “Being in the presence of so many advocates for people with disabilities has been inspiring.” 2014 Conference Sponsors Presenting Sponsor Amerigroup RealSolutions in healthcare Opening and Keynote Session Sponsors NC Council on Developmental Disabilities Mebane Rash Breakout Session Sponsors Garriss Hardy & Associates, LLC Marketing Association for Rehabilitation Centers NC Association of Rehabilitation Facilities NC Statewide Independent Living Council RHA Howell Care Centers, Inc. Vicki Smith Supporters Easter Seals UCP NC & VA Law Offices of Douglas Koenig Nancy Mayer Israel Pattison PowerChair Plus / James McManus Janna Shisler From the Director Last month, we held our first annual conference. When initially planned, we hadn’t decided how frequently we would hold our conference. Based on the feedback provided by many of the people who attended this year, we can now say with certainty that it will be an annual spring event. Our conference focused on the rights of people with disabilities and the role of legally-based advocacy. Disability Rights NC is primarily responsible for enforcing the federal and state policies that protect the rights of people with disabilities. This conference is just one mechanism we use to inform the advocacy community not only about the rights of people with disabilities but also how to achieve those rights. The primary goal of the conference is to train a cadre of effective advocates. If you are an advocate for people with disabilities, our conference is designed for you. Not sure if you are an advocate? Really, anyone who has a disability or touches the life of a person with a disability, discusses the needs of people with disabilities, but most importantly challenges any system to meet those needs, is an advocate. So don’t miss our second annual conference in 2015! Vicki Smith Executive Director Self-Advocacy Resources on Website If you attended our conference this year, you received a lot of materials in hard copy and electronic format. These materials included self-advocacy packets on guardianship and service animals, Medicaid appeals fact sheets, employment resources, special education checklists, and much more. Many of these resources have been and continue to be available on the home page of our website under “Self-Advocacy Resources”. The self-advocacy resource pages include information, publications and links to helpful websites on the following topics: Accessibility Deaf and Hard of Hearing Education -- Postsecondary Education Employment General Resources and Helpful Internet Links Guardianship Health Information Privacy (HIPAA) Housing Law Enforcement Medicaid Appeals Medicaid and Healthcare Prisons and Jails SSA Benefits and Overpayments Service and Support Animals Special Needs Trusts Transportation Voting We hope that you find these resources helpful in advocating for yourself and people with disabilities. HR 3717, the Murphy Bill, Will Negatively Impact People with Mental Illness In April the House Energy and Commerce Committee, Subcommittee on Health held a hearing on HR 3717, the Helping Families in Mental Health Crisis Act. Though HR 3717 purports to help people facing a mental health crisis, it actually limits protections people with psychiatric disabilities depend on. It reduces funding for essential protection and advocacy services, strips privacy protections, and shifts investment away from innovative community-based services toward coercive forced treatment. These changes will leave people with mental health care needs without advocates and discourage people from seeking the treatment they need. The bill takes the wrong approach to our mental health care system. Wrong on PAIMI The bill cuts funding for the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program by 85%, prevents the program from engaging in systemic advocacy on behalf of people with psychiatric disabilities, and prevents the program from conducting advocacy on any issues except for abuse and neglect. PAIMI is a lifeline to people with mental illness. It provides for investigation of abuse and neglect, advocacy to fight discrimination in housing and employment, and legal representation for children and adults seeking appropriate treatment and due process protections. Cutting the program’s funding or scope would be an affront to the dignity of people with mental illness. Wrong on Privacy The Health Insurance Portability and Accountability Act (HIPAA) provides privacy protections regarding health information. HR 3717 would single out people with psychiatric illnesses and limit those protections. This is counterproductive as it will create a disincentive to seek treatment for people who fear the stigma still, unfortunately, associated with mental illness. Wrong on Treatment The bill requires states to embrace a forced treatment mechanism that is not supported by evidence and divert money away from the essential community-based services that should be the foundation of our mental health care system. You can read the full text of the bill here: http://beta.congress.gov/bill/113thcongress/house-bill/3717/text. Issue Spotlight Job Descriptions: What’s in Yours? The Americans with Disabilities Act (ADA) prevents employment discrimination against people with disabilities who are qualified to perform the essential functions or minimum qualifications of the job. There are a number of factors that determine what is an essential function of the job, but many employers believe that they can define it simply by including them in the job description. However, the fact that a task is included in the job description does not necessarily mean that it is an essential function of the job. Most job advertisements include a description of the minimum qualifications a person must have to be considered for employment. For example, an advertisement for a shelf stocker at a grocery store might indicate that individuals who apply for the job must be able to lift up to 25 pounds. Sometimes, an advertisement includes minimum qualifications that are not related to the work actually performed in that job. For example, requiring shelf stockers to have a high school diploma may screen out individuals with a learning disability or an intellectual disability who have not received a diploma but are fully capable of performing all parts of the shelf stocker job. Another example would be a requirement that individuals must be able to hear to be a lifeguard when, in fact, the ability to hear is not required to perform the job. Qualification standards are illegal if they screen out of hiring consideration people with disabilities who are otherwise qualified to do the job. If you believe you have been denied an employment opportunity because of a discriminatory qualification standard, you may complain to the Equal Employment Opportunity Commission (EEOC) within 180 days of the violation. Visit www.eeoc.gov for more information. Voting Changes Last year’s new election law brought many changes. The one that has made the most news is that, beginning in 2016, voters will be required to produce a photo identification to vote. Voters who do not have adequate photo identification can receive a free voter ID from the NC DMV. Information is here: http://www.ncdot.gov/dmv/driver/id/. Voters who choose to vote absentee will now need the signature of TWO witnesses or a notary public on their ballot. There also is a form for requesting an absentee ballot, available here: https://www.ncsbe.gov/ncsbe/Portals/0/FilesP/AbsBallotReqFormv112013.pdf. Voters who live in facilities and vote absentee can now request assistance with casting absentee ballots from Multipartisan Assistance Teams. These teams can visit nursing homes, hospitals, and other facilities at the request of voters or facility staff to witness absentee ballots and provide any necessary assistance. County boards of elections will need lots of people to assist all those voters, so this is a great volunteer opportunity to help people with disabilities vote! Go to https://www.ncsbe.gov/ncsbe/Voting/Absentee-Voting/MAT. There also were changes to the one-stop voting period, out of precinct voting, and voter registration deadlines. For more on recent election law changes, visit the NC State Board of Elections website at https://www.ncsbe.gov/ncsbe/Voting/voter-guide/recentelection-law-changes. Legal Update Disability Rights is now engaged in nine cases in federal court and one in state court. The following is an update on three of these cases. NC DMV Violates the Americans with Disabilities Act – Wilson, et al. v. NC DMV, 5:14-CV085-BO (EDNC). In February, Disability Rights NC filed an action in federal court against the NC Department of Motor Vehicles (DMV), suing on its own behalf as well as representing six individuals. The litigation alleges that the DMV maintains a Medical Review Program directed to people with disabilities based on speculation, stereotypes and unwarranted generalizations about their abilities. The DMV’s program requires people with disabilities to undergo behind-the-wheel driving tests, obtain unnecessary physical evaluations and submit to arbitrary licensure restrictions, all without benefit of minimal due process guaranties. The DMV Medical Review Program is a mechanism for the DMV to identify unsafe drivers. Doctors, family members, and others may suggest that a driver is no longer capable of safely driving, and the DMV may require that individual to undergo medical screening. However, the DMV has extended the program to drivers, like the Plaintiffs in this case, who are capable, safe drivers but who have a physical disability. Each individual Plaintiff was referred for testing or medical review by DMV staff based on the DMV’s policies towards drivers with disabilities. One of the Plaintiffs has been required to provide medical information to the DMV each year for four years. Each year, his doctor has informed the DMV that his cerebral palsy is stable and non-progressive and does not require medical follow-up regarding his ability to drive safely. And, even though he passed his driving test, he was told he must undergo – and pay for – an expensive “behind the wheel assessment” performed by an occupational therapist. Another Plaintiff visited the DMV simply to change her address. When the DMV discovered she had a disability, the agency required her to submit a Medical Report. Although her doctor indicated she did not need restrictions, the DMV decided that she would not be allowed to drive more than 25 miles from home, or more than 45 miles per hour. She appealed, but was never given a hearing. Instead, the DMV ordered another medical review and road test. Excessive Use of Mechanical Restraint in a Facility – Nicholas C. v. Wos, 1:14-cv-0072-MR (WDNC). Disability Rights NC recently filed this lawsuit challenging the excessive use of a mechanical restraint device by the J. Iverson Riddle Developmental Center (JIRDC) on Nicholas, a 20-year-old resident of the facility. The Center’s treatment of Nicholas was uncovered through Disability Rights NC’s monitoring of the activities of the JIRDC Human Rights Committee, which must review the Center’s use of restraint and seclusion. The lawsuit was filed after discussing this case for some time with staff of both JIRDC and the State to force the Center to discontinue the use of the mechanical restraint device. In response, JIRDC modified Nicholas’s behavior plan to eliminate the use of the device, replacing it with the use of seclusion to a potentially excessive degree. Disability Rights NC continues to monitor the situation to determine whether additional action is required. Still Awaiting Judge’s Decision Following 39-Day Trial – Clinton L. v. Cansler and PBH, 10-cv0123-JAB (MDNC). In this case, Disability Rights NC represents six former Thomas S. class members whose community placements were jeopardized due to a rate cut implemented by PBH (now known as Cardinal Innovations), thus increasing their risk of institutionalization in violation of the ADA and the Olmstead decision. The trial of the case before District Judge Carlton Tilley began on September 9, 2013. Final arguments in the case were held on November 13-14, 2013. We have not received a decision by Judge Tilley. What Types of Legally-Based Advocacy Does Disability Rights NC Provide? Information and referral (I&R) is the first level of service on a continuum of services offered by Disability Rights NC. I&R is provided if a caller is: (a) ineligible for Disability Rights NC’s services, (b) does not raise target issues, (c) is eligible and raises target issues but representation by Disability Rights NC is not needed or warranted, or (d) Disability Rights NC does not have the capacity to represent the caller. I&R is limited to the provision of information that is generic (not fact-specific); either readily accessible (e.g., in existing Disability Rights NC brochures or publications) or can be found quickly; and/or to the provision of referrals from standard lists that are kept by Disability Rights NC or can be found quickly. Self-Advocacy Technical Assistance (STA) is a level of intervention that can include advice and counseling, brief research, or letter writing to the client to summarize assistance given. Advice and counseling assistance includes informing a client of their rights; coaching the client in self-advocacy; reviewing information; counseling a client on actions one may take; or assisting the client in preparing letters or documents and/or the dissemination of information and materials related to the disability rights issue raised by the client. It includes providing information sheets and other materials. With STA, no direct action is taken on behalf of the client. A caller may become a legal case client if: • The request involves an issue area designated as a target by the Board of Directors. • The request presents an issue which can be competently and satisfactorily handled by current staff or by interns working closely under staff supervision. • The request presents a meritorious claim that has a reasonable possibility of satisfactory resolution. Disability Rights NC is required to consider, when deciding which cases to accept, the merits of the case and the likelihood it can be resolved with beneficial results not only for the client but also for other persons with disabilities. • The request indicates an unavailability of effective alternative representation or resources. • The request indicates immediacy, severity and duration of effects of the threatened harm. •The request indicates likelihood of positive systemic impact. Disability Rights NC has the capacity to take the case, e.g., funds are available in the respective programs. 2014 Champions of Equality and Justice The awards reception for the 2014 recipients of the Champions of Equality and Justice Awards will be held on Friday, November 7, 2014 at the Durham Arts Council. We are now accepting nominations for the 2014 Champions of Equality and Justice. All nominations for the 2014 Awards must be submitted by September 12, 2014. If you know an individual deserving of recognition, please nominate them. You will find more information and a link to download the nomination form on our website – look for the Champions Award page under “Our Story.” New Members Appointed to the Disability Rights NC Board of Directors Four new members recently appointed to the Disability Rights NC Board of Directors bring a wealth of experience advocating for people with disabilities. Lourdes Arenas Fernandez lives in Holly Springs and is the mother of a son with a developmental disability. She has served on the NC Council on Developmental Disabilities for the past four years. She is an attorney at Rogers-Arenas Immigration. Lourdes wants to make sure every individual with a disability, including Latinos, is equally served in North Carolina. Rebecca Painter is a native of western North Carolina who moved to the coast in 2006 where her husband is serving aboard Camp Lejeune. She became immersed in the special needs and disability communities when her husband was diagnosed with posttraumatic stress disorder and a traumatic brain injury in 2009, and even more so in 2012 when her son was diagnosed with ADHD and being on the Autism Spectrum. Since then she has become a full time caregiver for her husband and three children. Rebecca first learned about Disability Rights NC during a meeting of her local chapter of the Autism Society of North Carolina and later completed the DATE volunteer training program. She is currently working toward a degree in health and wellness administration. Jack Register is an Assistant Professor in the Department of Social Work at UNCGreensboro. He is dually licensed as a clinical social worker and addiction specialist, and has many years experience as a psychotherapist providing clinical services to families, groups, and individuals with mental health and addiction concerns. Jack was a member of the PAIMI Advisory Council when the P&A transitioned from state government to Disability Rights NC. He is currently working on his doctorate degree in Public Policy and Social Change. His doctoral research is focused on the public sector’s capacity to adequately serve elders and people with disabilities in long-term care who have behavioral health and addictive needs. Shelly Stephens is a self-advocate who moved to Murphy, NC from Oklahoma four years ago and, until recently, was employed at a Center for Independent Living as an Independent Living Specialist. She studied Social Change in her master’s degree program at the University of Oklahoma. Because Shelly has utilized the assistance of the protection and advocacy attorneys for herself, she understands the importance of the work that Disability Rights NC provides to the clients it serves. In Oklahoma, she was appointed by the Governor of Oklahoma to serve on Oklahoma’s Statewide Independent Living Council and the task force for creating Oklahoma’s five-year plan for implementation of the Olmstead decision. Shelly is committed to advocating for legislative change that will improve the lives of persons with disabilities. In addition, Pat McGinnis assumed the role as Board Liaison to the PAIMI Advisory Council. Pat has more than a decade of experience as a cross-disability advocate serving on national, state, and local boards, councils, and committees. Currently, Pat is chair of the Disability Rights NC PAIMI Advisory Council, chair of Smoky CFAC Central Region, CFAC Representative to the Smoky Board, CFAC Representative to the Network Provider Council, and member of the Julian F. Keith ADATC Human Rights Committee. Previous leadership highlights are: founding member of Foothills Area Program CFAC; founding member and first elected NAMI NC Consumer Council Chair; facilitator of the first integrated cross-disability WRAP class in North Carolina for both deaf and hearing clients with mental illness to promote inclusiveness; and member of NAMI National Consumer Council and NAMI North Carolina Board of Directors. Volunteer Spotlight: Carole Edwards When Carole Edwards, a former Miss Deaf North Carolina, completed DATE training in March of 2012, it was a perfect fit. The DATE program was created by Disability Rights NC to train volunteers across the state to support the self-advocacy efforts of people with disabilities and their families. Carole believes that “every person with a disability is a person first. The choices they make belong to them. I cannot make that decision for them, but I will be happy to guide them in the process.” Carole graduated from Gardner-Webb University in 2009 and received a master’s degree from Winston-Salem State University in 2012. She did not learn American Sign Language (ASL) until she was in college and since then has used it as her primary mode of communication. Carole revealed, “It’s just so much easier on me than having to rely on my hearing aid all the time!” She volunteers with Habitat for Humanity and Bridge II Sports where she assists with wheelchair basketball. Always on the go, Carole was looking for new volunteer opportunities when she discovered the DATE program. After completing six hours of training, Carole said her favorite part was “hearing other people’s experiences in the community which helped me learn about the resources that were available for us to utilize. It helped me improve my resources for consumers to use through my job as well.” The resources and skills that Carole learned in the DATE program have proven to be invaluable in her current position as a Community Accessibility consultant with the Division of Services for the Deaf and Hard of Hearing, and previously at the Alliance of Disability Advocates. So far, Carole has been matched twice with DATE callers and has assisted in finding community resources and completing appeal paperwork. Annual Target Survey Available for Your Input on June 27 As North Carolina’s protection and advocacy system for people with disabilities, we establish annual areas of focus or Targets that guide our use of resources each year. Targets determine the work we do and the cases we take. Targets are the outcomes we work to achieve. Our limited resources do not allow us to tackle all of the issues facing people with disabilities in our state. Each year, we ask for public input to help us determine the most widespread problems or the problems that pose the largest threats to the independence of people with disabilities. Our annual Target Survey will be available for your input on June 27, 2014 and will stay open until August 1, 2014. The link to the survey will be posted on the home page of our website – www.disabilityrightsnc.org. Please take a few minutes to complete the annual Target Survey to help us determine if the proposed 2015 Targets adequately represent the needs of people with disabilities in our State. If you need us to mail you a hard copy of the survey, call us at 877-235-4210. Disability Rights NC Is Here for You: New Partnership Expectations As a young agency, Disability Rights NC frequently reviews how it provides services to people with disabilities. We consider every person with a disability living in North Carolina to be our client. While our limited resources do not allow us to provide direct advocacy to everyone who calls us for assistance, we strive to provide as much help as possible in every case. We recently developed a set of principles to guide our work. We set high expectations for ourselves. We want you to know what those expectations are, and we invite you to hold us accountable. Our Partnership Expectations are outlined here. You can also find them on our website. Or call our office at 877-235-4210 to request that we send you a copy by email or US postal mail. What the Disability Rights Community Can Expect From Disability Rights NC Our advocacy will be zealous and determined. We strive to be effective and innovative. We will take on issues of importance to the disability community even when the outcome may be difficult to achieve, or may take a long time to reach. We will integrate a variety of advocacy approaches in all of our work, including selfadvocacy, legal, non-legal, media, public policy, legislative and investigatory. We will continue to value diversity. Our board and staff will reflect the diversity of North Carolina including disability. Our advocacy efforts will affirmatively address the needs of traditionally underserved and underrepresented communities. We will be responsive to requests from people with disabilities for assistance and information. Disability Rights NC and Individual Clients If Disability Rights North Carolina takes on an individual issue for you, we will ask you to enter into a partnership with us to work together on a shared goal. This partnership must be built on mutual respect, trust, and communication. What You Can Expect From Us Our advocacy will be of high quality regardless of the type of service, the nature of the problem, or who the client is. We will be honest, prepared, truthful, and informed. Our work will be consistent with the Standards for Protection and Advocacy Systems adopted by the National Disability Rights Network, which can be found on our website. We will be honest about our limitations, values, resources and the likely outcome. Our work will conform to the relevant Rules of Professional Conduct. We will let you know what is happening on a regular basis, and will be available to give you updates when you ask. We will provide you with information and advice to help you participate in choices about the desired outcome and the method of achieving the outcome and your choices will be treated with respect. We will be guided by the mutually agreed upon desired outcomes of your case. We will invite and encourage you to actively participate in every stage of the process. You will be treated with respect and as a trusted partner. What We Will Expect From You You will be engaged in your case. You will work with us to decide what outcome is best and how to achieve it. You will be honest with us and provide us all the information we need to accurately advise you. You will treat us with respect and as a trusted partner. You will let us know of any changes in your situation, or updates that relate to your case. You will stay in touch and let us know if you change your address or phone number. We Are Moving On May 23, 2014, Disability Rights NC is moving to a new location in Raleigh. The new office will be conveniently located just off Glenwood Avenue about a mile from the current location. New address effective May 23, 2014: 3724 National Drive, Suite 100 Raleigh, NC 27612 All other contact information will remain the same. Get All the News Faster! Receive the Disability Rights NC quarterly newsletter, periodic news updates, calls to action and event information by email. Sign up for eNews on our website: www.disabilityrightsnc.org. Disability Rights NC Board of Directors Kathy Boyd, Chair (Wake Forest) Janna Shisler, Chair-Elect (Chapel Hill) Cheryl Mulloy-Villemagne, Treasurer (Waynesville) Sadie Brewington Barbour, Secretary (Clinton) Pat McGinnis, PAIMI Advisory Council Chair (Marion) Rusty Bradstock (Greensboro) Bill Donohue (Winston-Salem) Lourdes Fernandez (Holly Springs) D. Jones (Greenville) Paula Munos (Lewiston-Woodville) Rebecca Painter (Camp Lejeune) Jack Register (Greensboro) Shelly Stephens (Murphy) Kim Taylor (Statesville) Charles Walker (Raleigh) Deborah Whitfield (Charlotte) Disability Rights NC Staff Executive Vicki Smith, Executive Director Finance & Operations Charlie Barnes, Chief Financial Officer Janice Willmott, Chief Administrative Officer Karla Blackwell, Receptionist Allyson Hilliard, Accounting Assistant Mavis Jones, Office Manager Dennis Knight, IT Administrator Haydee Martinez, Administrative Assistant Will McDowell, Office Aide (Supported Employment) Legal & Advocacy April Giancola, Chief Legal Program Officer John Rittelmeyer, Director of Litigation Cas Shearin, Director of Investigations and Monitoring Jennifer Bills, Senior Attorney Tabitha Bryant, Attorney Raven DeMonia, Paralegal Yasmin Farahi, Attorney Anthony Garcia-Copian, Intake Specialist Lisa Grafstein, Senior Attorney Iris Green, Senior Attorney Kady McDonald, Intake Specialist Kishona Mimms, Investigator Lisa Nesbitt, Attorney Steve Noblitt, Advocate Susan Pollitt, Senior Attorney Lisa Rabon, Attorney Mercedes Restucha-Klem, Attorney Holly Stiles, Attorney Kathy Smith, Advocate Kristine Sullivan, Attorney Debbie Thome, Advocate Chris Trottier, Senior Attorney Policy & Outreach Elaine Whitford, Director of Development Corye Dunn, Director of Public Policy Annaliese Dolph, Lobbyist Gabrielle Martino, Advocate and Outreach Coordinator Disability Rights North Carolina is a federally mandated protection and advocacy system with funding from the U.S. Department of Health and Human Services, the U.S. Department of Education, and the Social Security Administration. It is a 501(c)(3) nonprofit organization. Disability Rights North Carolina Champions for Equality and Justice 2626 Glenwood Avenue Suite 550 Raleigh, North Carolina 27608 919-856-2195 877-235-4210 888-268-5535 TTY 919-856-2244 fax Upon request, information is available in alternate formats. North Carolina’s Protection and Advocacy System www.disabilityrightsnc.org