On Target • Page 1 Volume 16 • Special Edition From the Director 2014 Targets: A Special Publication TARGETS. You’ve heard us talk about them. Many of you responded to our annual survey when we asked for your input about them. And you might have even read the list that we publish each year. But why does Disability Rights NC have Targets and what do they really mean? We created this special edition of our newsletter -- aptly named “On Target” -- to tell you about our new Targets for 2014 and the role that they play in the work that we do to improve the lives of people with disabilities living in North Carolina. Our staff and board of directors carefully considered all of the input and information you provided in response to our annual survey. The Targets outlined here were the result. Many, if not all, of our Targets will take longer than a year to accomplish. In some cases, the State must change the way it provides services to people with disabilities. In other cases, legal action is necessary and lawsuits can take years to reach a final judgment. Regardless of what the Target is, one thing is certain -- Disability Rights NC needs the help of all of its partners in the disability rights community to make lasting change happen. QA & Q: I called Disability Rights NC, but was told that my case did not fit current targets. How do I know when it is appropriate to call? A: You can always check out the current targets on our website and you can also call to speak with an intake specialist to find out if we can assist you. Even if your case does not qualify to receive direct services from our attorneys and advocates, you may receive information and referral services. You also may be able to work with one of our trained volunteers through the DATE program or a pro bono attorney program. Check our website for more information about these programs. Vicki Smith, Executive Director What Is a Target? Inside This Issue The Targets adopted by Disability Rights NC are true to the definition -- a goal to be reached. To achieve full equality and justice for people with disabilities living in North Carolina, we need to accomplish many different goals. But we do not have resources necessary to tackle all of the issues facing people with disabilities at one time. Through public input and information received from people The need for Targets................. 2 Continued on page 2 Work not covered by Targets.... 2 Four core functions................... 3 Public policy advocacy............. 4 Who responded to the survey.. 4 2014 Targets............................. 6 Page 2 • On Target who call our office for help, we look for problems that are widespread or that pose the largest threats to the independence of people with disabilities. Once we identify the problems, we develop an outcome that represents the resolution or elimination of the problem. That outcome becomes a Target of our work. Why Does Disability Rights NC Need Targets? As the federally-mandated protection and advocacy (P&A) system in North Carolina, we are required to protect the rights of all people with disabilities residing in North Carolina. Statistics released by the U.S. government estimate that one in five people live with some type of disability. Based on North Carolina’s current population, that’s 1.9 million children and adults living with a disability in our state. Disability Rights NC receives most of the funding for its work from the federal government. With these resources, Disability Rights NC is expected first to ensure that people with disabilities live in safe and humane conditions. We must also work to inform individuals about their legal rights and how to enforce them; ensure that people with disabilities are not unnecessarily institutionalized; and enforce the rights of all North Carolinians with disabilities under federal and state law. Targets give us the structure within which we can spend our limited resources. Each year, we carefully plan the expenditure of the grant funds across the Targets and activities conducted under the three core P&A functions not included in the Targets. In addition, the Targets give our funders a measurable objective with which to gauge our success in achieving the Target. As with all grant funds, the grant recipient must account for how it spent the money. Disability Rights NC develops Targets for only one of the four core areas of its work. Does Disability Rights NC Do Any Work Not Covered by the Targets? Yes! The Targets guide the work conducted by our legal teams. But legally-based advocacy is only one of four core functions of a P&A system. We do not develop Targets for three of the four P&A core functions because the work in those areas is narrow in scope. On Target • Page 3 Four Core Functions of Disability Rights NC Information, Referral and Training Information is a powerful advocacy tool. Knowing your rights and how the system works can empower people with disabilities to get the help they need. For this reason and because we do not have enough resources to represent everyone who contacts us, we provide information, advice and/or written materials to every eligible caller. As part of our established protocols, our goal is to provide all P&A-eligible callers some level of information and referral (I&R) when their issue falls outside our annual Targets. Disability Rights NC provides training on disability rights including special education, guardianship and rights restoration, resident/patient rights in facility settings, anti-discrimination laws in housing and employment, mental health laws, voting rights, and self-advocacy. We offer training to groups across the state that builds advocacy skills and knowledge of specific areas of law. Monitoring Disability Rights NC monitors facilities where people with disabilities live or receive services to prevent, detect, and address instances of abuse, neglect or exploitation. Our monitoring activities may include (1) face-to-face interviews with individuals with disabilities living in the facility, (2) face-toface interviews with at least one staff member working in the facility, (3) observation and evaluation of the physical conditions of the facility, and (4) a review of records, when appropriate, in accordance with applicable federal and state law. Our primary goal is to ensure the residents’ rights are protected and that they are living in a safe environment with opportunities to participate in activities important to them, such as recreational activities and work. Also during our monitoring visits, we identify individuals who could live in the community if they had the proper supports and services. Investigations In situations where we believe serious abuse or neglect may have occurred, we conduct an investigation. The investigation is a systematic and thorough examination of information, records, evidence and circumstances surrounding the allegation of abuse and neglect. Investigations are distinct from advocacy and require a significant allocation of time and resources for activities such as interviewing witnesses, gathering evidence, and generating a written report which may or may not be released publicly. Because of our limited resources, we focus on investigations where the outcome is systemic change resulting in better care for large groups of people with disabilities. If your group is interested in rights training on a particular issue or a general overview of the work of Disability Rights NC, call or email us and ask to speak with the Outreach Specialist. What Is a P&A? The first protection and advocacy (P&A) program was created in 1975 after a series of television reports exposed the deplorable conditions at Willowbrook, a large New York state institution for people with mental retardation. Similar concerns about the abuse and neglect in mental health facilities led to the expansion of the P&A system to include people with mental illness. Safeguarding the well-being of individuals living in institutions remains a major focus of the work of Disability Rights NC. Over the years, the scope of P&A work has expanded to include protecting the rights of people with all types disabilities, whether they live in their own home, in a group home or in an institutional setting. The P&A laws evolved to give us the authority to devote resources to ensure full access to inclusive educational programs, healthcare, accessible housing, transportation, and productive employment opportunities. Page 4 • On Target Legally-based Advocacy Including Individual and Systems Advocacy Public Policy and Legislative Advocacy In addition to the four core functions of a P&A, Disability Rights NC engages in policy advocacy, including lobbying, to create systemic change. We cannot use our federal funds to conduct lobbying activities. Instead, lobbying activities are funded by donations we receive from individuals and corporations. As an independent 501(c)(3) non-profit organization, all donations given to Disability Rights NC are tax-deductible. Legislative and regulatory advocacy is a critical piece of our work because laws and regulations can be the ultimate cause of the problems people with disabilities face. A statute or regulation may not be protective enough or may be interpreted incorrectly. We focus on public benefit programs because, frequently, those are the only places people with disabilities can get the services they need. We use systems advocacy to change policies at every level, but pay special attention to agencies with enforcement responsibilities. We also monitor non-governmental agencies that are paid with federal or state money. Our advocacy efforts might be directed at the local, state, or federal level. Where we work and what we do will depend on the nature of the problem and who has the ultimate authority over it. We represent the interests of individuals both individually and systemically in the courts and other legal tribunals. This is the work tied to our Targets, and includes the cases we take to represent one person as well as class action lawsuits we file to address widespread legal violations. Special Authority of P&As Since P&As were created to prevent the abuse and neglect of individuals with disabilities, Congress gave them extraordinary investigative authority. For example, we have routine access to all individuals with disabilities in facilities providing services. The facility must give us access to all records of individuals with disabilities and other records that are relevant to the investigation we are conducting. We also must have immediate access (within 24 hours of request) to all records related to the death of an individual living in a facility, or in cases where we believe there is “probable cause to believe that the health or safety of an individual is in serious and immediate jeopardy.” We can take a variety of actions in response to findings of abuse and neglect, including litigation to enforce constitutional and statutory rights of facility residents and the issuance of public reports describing our findings and recommendations for corrective action. Who Responded to the 2014 Target Survey? What was their relationship to disability? On Target • Page 5 What was their ethnic background? any? m w o H als dividu 00 n i 0 3 8 all 1 ng in lina i d i s e r Caro North ties coun What disability did they identify with? What You Said Working with Adults versus Children Asked to rank the importance of working with adults and children, 587 of 799 (74%) individuals responding to the survey said serving adults with disabilities was very important. 540 out of 771 (70%) individuals said serving children (birth to 21) with disabilities was very important. Ensuring Safety in Facilities versus Developing Community Services 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. “Working to Make Facilities Safe” was very important to 484 of 794 (61%) individuals. “Developing or Protecting Community Based Services” was very important to 567 out of 796 (71%) individuals. Page 6 • On Target 2014 Targets Target 1: Barriers to employment are removed Why This Is Important Work is central to community integration. Work leads to economic stability and ultimately prevents the need to depend on inadequate and unpredictable public benefits. Having individuals with all types of disabilities in work environments is critical to the full integration of people with disabilities. Increasing the integration of people with disabilities in the workplace will help create a world where disability is not marginalized, but is viewed as part of the human condition. Visibility will undermine stereotypes and produce a better environment for workers with disabilities not just from a legal perspective, but from a cultural perspective. Barriers to employment include discrimination (e.g. failure to provide accommodations, discriminatory qualification standards) and economic disincentives to work. Immediate Objectives Provide direct legal services and representation on reasonable accommodations and other discrimination issues. Establish positive case law/precedent regarding employment rights, including the use of qualification standards that exclude individuals with disabilities. Make the Medicaid buy-in real for all its intended beneficiaries, removing the potential loss of Medicaid as an economic barrier to work. Continue to advocate for a more effective system of employment services that does not promote placement in sheltered workshops. Educate members of the disability and legal communities on issues related to the employment of people with disabilities. Who Benefits Individuals facing employment discrimination, including lack of reasonable accommodations and/ or use of impermissible qualification standards. The implementation of the Medicaid buy-in will directly benefit the clients in that case, as well as the hundreds of individuals who are expected to take advantage of the buy-in in order to work and maintain Medicaid. Funding for Target from PABSS, PAIR, PAIMI, and PAAT Funding Acronyms The funding for our work on the Targets comes from seven federal grants and one grant from the NC State Bar. The grants are for varying amounts of funding ranging in fiscal year 2013 from $37,740 to $1,080,862. Each year, we carefully plan the expenditure of the grant funds across the Targets and activities conducted under the three core P&A functions not included in the Targets. PABSS - Protection and Advocacy for Beneficiaries of Social Security IOLTA - North Carolina State Bar Plan for Interest on Lawyers’ Trust Accounts PATBI - Protection and Advocacy for Traumatic Brain Injury PAAT - Protection and Advocacy for Assistive Technology PAVA - Protection and Advocacy for Voting Access PAIDD - Protection and Advocacy for Individuals with Developmental Disabilities PAIMI - Protection and Advocacy for Individuals with Mental Illness PAIR - Protection and Advocacy for Individual Rights On Target • Page 7 Target 2 - Equal access to programs and services under the ADA are enforced. Why This Is Important People with disabilities are often denied full and equal enjoyment of the services and facilities offered by businesses, local governments, and the state because of physical barriers or policies that do not take their rights into account. Equal access is essential for the visibility and full integration of people with disabilities. Immediate Objectives Provide direct legal services and representation to clients being denied equal access by public entities and places of public accommodation. Increase compliance with the obligation of public entities to designate ADA coordinators. Address DMV issues of excessive testing and medical reviews for people with disabilities through continued policy changes, and administrative or court action if necessary. Expand awareness of Title II and Title III rights and increase advocacy among lawyers and advocates outside Disability Rights NC. Who Benefits Direct beneficiaries will be individual clients. Anyone with a disability will be indirect beneficiaries of our advocacy. Barriers to being engaged with the community will be removed. Funding for Target from PAIDD, PAIMI, PAIR, PATBI, and PAAT “To the staff of Disability Rights NC -- thank you for your expertise and dedication to individuals with disabilities and their families.” —Target Survey Respondent Target 3 - Access to health care including effective communication with health care workers. Why This Is Important Barriers to healthcare lead to bad outcomes and health disparities for people with disabilities. People with hearing loss complain that they are unable to communicate with their doctors or other healthcare workers. This has resulted in individuals being undiagnosed because there were no interpreters during doctor appointments. Many medical offices are not equipped with accessible medical equipment or lifts to aid in moving and treating patients with limited mobility. Many people with intellectual disabilities lack providers who are aware of the need to follow treatment recommendations for all patient populations (e.g., recommending mammograms for women with intellectual disabilities). People with disabilities need a provider system that understands and adheres to equal access principles. This will lead to a healthier population overall and better health outcomes for people with disabilities in particular. Immediate Objectives Give at least four presentations about the right to adequate communication in healthcare settings for patients who use American Sign Language. Continue to build relationships with the medical community and providing education to healthcare professionals about removing barriers to healthcare for individuals with disabilities. Who Benefits Individual clients will be persons who are deaf or hard of hearing and unable to access healthcare due to the lack of interpreter or other communication aids. Individuals with physical or cognitive impairments will be provided with information and education about their right to equal access to healthcare services. Funding for Target from PAIR and PAAT Page 8 • On Target QA & Q: I was denied Social Security Disability benefits. Does that mean that I don’t qualify to receive services from Disability Rights NC? A: The Social Security Administration uses one of over 20 different definitions of disability in federal law. Disability Rights NC uses the federal definition under the Americans with Disabilities Act (ADA), which is the broadest definition and includes physical and mental impairments that substantially limit one or more major life activities. 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) Rusty Bradstock (Greensboro) Suzanne Burley (Raleigh) Pete Clary (Winston-Salem) Bill Donohue (Winston-Salem) Lourdes Fernandez (Raleigh) D. Jones (Greenville) Paula Munos (Lewiston Woodville) Jack Register (Greensboro) Mary Skov (Wilmington) Kim Taylor (Statesville) Sheila Wall-Hill, PAIMI Advisory Council Chair (Charlotte) Charles Walker (Raleigh) Deborah Whitfield (Charlotte) Target 4 – Ability to exercise greater selfdetermination by voting, maximizing their independence. Why This Is Important There are numerous flaws in North Carolina’s guardianship laws and practice. While some of these problems stem from poor implementation of the law and are best addressed with the Administrative Office of the Courts (AOC) or county clerks of court, many are rooted in the guardianship statutes. During the 2013 session of the NC General Assembly, there were proposals to limit the voting rights of people with disabilities because of their guardianship status. In the final omnibus election reform legislation passed in July 2013, the Joint Legislative Oversight Committee on Elections was specifically directed to explore how to address the need of voters for assistance and other issues. We have an opportunity to explore our guardianship laws in more detail while ensuring that people with disabilities, regardless of their guardianship status, are able to exercise their right to vote. Immediate Objectives Monitor legislative intersession meetings and discussion of bills during the short session related to access to voting for people with disabilities, especially those under guardianship Promote legislative and administrative changes that improve our clients’ access to voting. Such changes may include making it easier for voters to request assistance from a person of his or her choice at the polls or when voting absentee, simplifying absentee voting in facilities, and increasing the utilization of existing protections such as limited guardianship rather than full guardianship, as opportunities allow. Who Benefits Beneficiaries may include voters and potential voters with disabilities, especially those under guardianship; voters who live in facilities; and voters who need assistance at the polls. Funding for Target from PAVA On Target • Page 9 Target 5 – Access to appropriate community based services and supports. Why This Is Important Implementation of Olmstead’s integration mandate has been slow in coming to North Carolina, where a disproportionate number of individuals with an ID/DD, mental illness, TBI and/or other disabilities remain relegated to institutional care. The State’s overreliance on restrictive settings for individuals with various disabilities has proven to require litigation to move the State to comply with the ADA. The State must abide by its obligation to serve individuals with various disabilities in more integrated settings, through shifting and/or increased funding for community-based care. This will require a State Plan which allows additional services or expansive use of existing services and due process for individuals receiving long-term services and supports. Any systemic changes in the way the State manages community services through Medicaid must include strong oversight and accountability of its contractors such as compliance with the ADA and other protections. Immediate Objectives Continue litigating current federal lawsuits to restore and preserve community-based services and to ensure due process protections. Educate families/guardians and people with disabilities about their rights and how to effectively advocate in a managed care environment. Advocate with MCOs and the state on issues that interfere with a person accessing services or to provide expansive, inclusive interpretations of eligibility criteria and service definitions, as well as procedural safeguards. Take action on behalf of individuals inappropriately placed in psychiatric or other institutions. Monitor DOJ settlement agreement implementation, particularly development of new service definitions, and litigate, if necessary. Who Benefits Clients may include people with disabilities who are facing a high risk of institutionalization, who are being subjected to a specific violation of their rights or individuals who are inappropriately placed in institutional settings. We will continue to focus on removing particular barriers associated with different disabilities. Funding for Target from PAIDD, PAIMI, PAIR, PATBI, and PAAT Target 6 - Keep students with disabilities in school and ensure transition planning for meaningful post-secondary outcomes. Why This Is Important The Individuals with Disabilities Education Act (IDEA) requires that students with disabilities receive a free and appropriate public education (FAPE). However, many of these students are suspended multiple times during the school year in violation of their right to receive FAPE. Youth with disabilities make up a disproportionate number of students who are suspended from school and who are referred to the juvenile justice system. The transition planning currently available is neither meaningful nor realistic for helping students overcome academic deficits and achieve post-secondary goals after high school. This target keeps students with disabilities in school by enforcing their rights under IDEA and corresponding state statutes. These statutes are used as a tool for reducing school suspensions and juvenile court referrals. Immediate Objectives Obtain compensatory services for our clients when they are denied FAPE related to school system suspension practices and Child Find violations. Require school systems to identify what specialized instruction our clients will receive related to their academic deficits. Require school staff training to prevent future FAPE violations against our clients and similarly situated students. Promote diversion of school-initiated juvenile petitions against students with disabilities. Page 10 • On Target Obtain positive behavioral supports and alternatives to suspensions. Who Benefits Students with disabilities who have experienced long-term suspensions and/or juvenile court involvement based upon unmet special education needs. Funding for Target from PAIDD and IOLTA Target 7 - Children with dual disabilities (ID/DD or other disabilities and mental illness) receive medically necessary services in the least restrictive environment. Why This Is Important Parents of children with mental illnesses and developmental disabilities struggle to find the appropriate mix of services to care for their children in North Carolina. Children are often able to access either ID/DD services or mental health services but not both. In many cases the few available mental health services are time limited and the intellectual disabilities services are wait listed. There is a lack of qualified providers who apply a holistic family-centered approach to treatment. Many in this population cycle in and out of institutions or are sent to institutions out of state far away from their homes. These children need services and supports to meet their individualized needs and to stay in the community. We have been providing individual advocacy and legal representation to this population since 2007, which has resulted in successful outcomes for many individual cases. Unfortunately, the systemic problem has not been addressed. These children have the right to receive medically necessary individualized mental health and developmental disabilities services in their own home, a family setting, or the most home-like setting appropriate to their needs. Immediate Objectives Take legal action to enforce the legal rights of children with dual disabilities. Who Benefits Research indicates that there are approximately 550 children in North Carolina who are dually diagnosed. All of these children will be direct beneficiaries of this litigation. Indirectly, the recommended systemic modifications should create an array of appropriate services by highly trained providers benefitting all children with disabilities. The case selection criteria will include all Medicaid eligible children under the age of 21 who are dually diagnosed and are having problems accessing medically necessary services to keep them in the community and out of institutions. Funding for Target from PAIDD and PAIMI Target 8 - Children with serious mental illness living in psychiatric residential treatment facilities (PRTF) receive an appropriate education. Why This Is Important Children admitted to PRTFs receive inadequate educational services while in the facilities. While at the facility they are anxious about falling behind their peers. After their discharge they are likely to be held back for their failure to earn any academic credits while in treatment or for their failure to satisfy End-of-Grade testing requirements. The General Assembly has directed the NC Department of Public Instruction and NC DHHS to correct this problem, but neither department has accepted the responsibility for payment for educational services. A legislative proposal was introduced in the 2013 session, but it was not adopted. Disability Rights NC has a longstanding interest in making certain that educational services are provided to children in PRTFs. With the recent reduction in the number of Level III and Level IV Group Home placements (and the corresponding increase in PRTF placements), more and more children are being placed in PRTFs. The failure to address the issue through statute means that a litigation strategy may be the only option that would achieve the desired result. On Target • Page 11 Immediate Objectives Encourage DPI and DHHS to adopt a workable permanent solution. Encourage both departments to implement interim measures providing educational services to children in PRTFs while a permanent solution is developed. Disability Rights NC Staff Executive Vicki Smith, Executive Director Finance & Operations Who Benefits Current residents of PRTFs in the state of North Carolina. This includes thousands of children with mental health disorders. Funding for Target from PAIMI QA & Q: What ever happened to the Governor’s Advocacy Council for People with Disabilities (GACPD)? A: The Governor’s Advocacy Council for Persons with Disabilities (GACPD) served as North Carolina’s P&A for more than twenty years. During that time, GACPD operated as a State agency. In 2007, Governor Easley announced the designation of Carolina Legal Assistance (CLA) as the new Protection and Advocacy agency. CLA was an independent organization outside of state government so they could better protect the interests of people with disabilities. As the new P&A agency, CLA was renamed Disability Rights North Carolina in September 2007. Q: Can you provide training on independent living? A: Our focus is on the legal right to live independently and not on the actual skills themselves. The Centers for Independent Living may be able to provide that training. North Carolina has seven regional centers. Find one near you at www.ncsilc.org/centers. 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 Legal & Advocacy April Giancola, Chief Legal Programs Officer John Rittelmeyer, Director of Litigation Cas Shearin, Director of Investigations and Monitoring Jennifer Bills, Senior Attorney Raven DeMonia, Paralegal Elizabeth Edwards, Attorney Anthony Garcia-Copian, Intake Specialist Lisa Grafstein, Senior Attorney Iris Green, Senior Attorney Morris McAdoo, 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 Gabrielle Martino, Outreach Specialist and Advocate Page 12 • On Target Need More Information? We recently updated the selfadvocacy resource pages available on the home page of our website. Resources include our publications, how-to guides and links to helpful information published by other organizations. Join Us For Our First Conference in April 2014 Sessions will include information about MCOs and a step-by-step guide on how to file a Medicaid appeal; guardianship; special education; general self-advocacy skills training; service animals; and much more! Check our website for a specific date, location, and registration information. QA & Q: I called another legal services agency for assistance, but I was told that I make too much money to qualify for free services. Does Disability Rights NC have any income requirements? A: No. Disability Rights NC may ask about your income as well as other demographic information for statistical purposes, but we do not have any income limitations to qualify for our services. Q: How many cases does Disability Rights NC take every year? A: The amount of cases we take per year varies, however in 2012, we received calls from more than 4,700 people with disabilities and provided direct advocacy and/or legal services to 992 people across the State. There are 1.9 million people in our state who have a disability and we consider all of those individuals to be our clients. www.disabilityrightsnc.org North Carolina’s Protection and Advocacy System 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. Raleigh, NC Permit #490 PAID Nonprofit Org. U.S. POSTAGE
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