2022 NEWS LETTER July Disability Rights of West Virginia Fragile X Syndrome Article by Lia Billings, DRWV Staff Attorney Fragile X Syndrome, also known as Martin-Bell Syndrome, is the most common form of inherited intellectual and developmental disability (IDD). It is called Fragile X Syndrome (FXS) because part of the X chromosome looks broken or fragile when viewed through a microscope. It is caused by changes in the FMR1 gene, which usually makes a protein called FMRP. FMRP is needed for brain development. People who have Fragile X Syndrome do not make this protein. Researchers estimate that about 1 in 8,000-11,000 females and 1 in 4,000-7,000 males have Fragile X Syndrome. FXS is usually more severe in males. It is not clear how many people carry the fragile X premutation, which can be passed down to their child and cause fragile X. Parents carrying the premutation are nearly two times more likely to have a child with a disability. Fragile X Syndrome affects a child’s intelligence, mental health, physical features, and behavior. Signs that a child might have FXS include: Developmental delays; Learning disabilities, like trouble learning new skills; Social and behavioral problems, like not making eye contact, anxiety, trouble paying attention, and hand flapping; and Physical feature s such as a long, narrow face, a large forehead, a large jaw, soft skin, and/or flat feet. Diagnosing Fragile X Syndrome requires DNA from blood, amniotic fluid, or other tissues. A doctor or genetic counselor can order a test. Testing can also be done to find changes in the FRM1 gene that can lead to Fragile X-associated disorders. A diagnosis of FXS can provide a reason for a child’s intellectual disabilities and behavior problems and give family and caregivers the ability to learn more about FXS to manage care. Boys are usually diagnosed around 35-37 months old, and girls, on average, are diagnosed around 42 months. Symptoms may appear as early as 12 months . Testing and Diagnostic Treatment Fragile X Syndrome cannot be cured, but some symptoms can be treated with medications. Additionally, various treatment services can help with learning important skills. Services can include therapy to learn to walk, talk, and interact with others. Early intervention services help children from birth to 3 years old and may improve a child’s development. Even if there has been no formal diagnosis of FXS, they may be eligible for services. In addition, treatment for specific symptoms like speech therapy often does not need to wait for a formal diagnosis of FXS. To develop the best treatment plan, parents, people with FXS, health care providers, and others who may be involved (i.e. teachers, therapists, etc.) should all work together to determine a course of services. Taking advantage of all available resources will help guide success. Outlook Fragile X Syndrome is a lifelong syndrome. However, the life expectancy for someone with FXS is the same as for the average person. Some individuals are able to live independently. Surveys show that around 4 in 10 women and 1 in 10 men with FXS grow up to have a high level of independence. Support Fragile X Syndrome can be a difficult diagnosis. Having support and community resources can help increase confidence in managing FXS and enhance the quality of life for everyone involved. Some resources include: The National Fragile X Foundation. They can be contacted at 1-800-688-8765 or treatment@fragileX.org to get information about treatments, educational strategies, therapies, and intervention. Community Support Networks (CSN) via fragileX.org. CSNs are organized and run by parent volunteers and provide support to families . Sources: Cleveland Clinic, CDC Client Comments Why we do what we do "I am co-guardian for my brother and on his behalf one of your senior advocates has been a public servant of the highest caliber! We recently navigated issues with our service provider and were unsure how to proceed. After a nebulous request to meet with their Director and several mid-level managers, our mother contacted the Disability Rights of West Virginia senior advocate. The advocate then initiated conversations with the Director to help define the group home / provider issues. Then she was able to confidently and compassionately share those legitimate concerns with us, prior to the face to face meeting so we were not blind-sided. She traveled to the meeting and was a reassuring advocate for us, and helped clarify the communication processes that were instituted! She has continued to make herself available via phone and email, recently responding to an email despite being out of the office for vacation. This simple email isn’t sufficient to accurately identify how valuable this employee was/is to our family. I’m sure you know what she is capable of, but her calmness under fire and ability to communicate in a precise and non-confrontational manner was very much appreciated!" "Great advocate."

2021 July NEWS LETTER Disability Rights of West Virginia Housing Accommodations and Modifications for People with Disabilities Article by Regina Desmond, DRWV Senior Advocate Under West Virginia’s Fair Housing Act (FHA), a landlord cannot discriminate against an applicant because of the applicant’s: Race; Color; Religion; Sex; Handicap (disability); Familial Status (presence of children 18 years old or younger, pregnant women, or persons anticipating adoption); National Origin; Blindness; or Ancestry. Private housing, housing that receives federal financial assistance, and state and local housing with certain exceptions are all protected under the Federal and State Fair Housing Act. The Federal Fair Housing Act requires accommodation in policies and operations for persons with disabilities if the accommodation is reasonable and necessary to afford persons with disabilities equal opportunity to use and enjoy housing. A reasonable accommodation is a change, exception, or adjustment to a property rule, policy, practice, or service. Some examples of reasonable accommodations are: adjusting the date rent is due to correlate with social security; assigning a lower mailbox; designating a parking area; permitting a Service or Emotional Support Animal to live in no-pethousing; waiving a pet fee and/or security deposit for a Service or Emotional Support Animal; permitting a live-in Personal Care Attendant to live with a resident who has a disability and might need 24-hour assistance or the waiving of any guest fees or rules due to this need. Landlords are also required to allow tenants with disabilities to make reasonable access-related modifications to their private living space. A reasonable modification is a structural change made to the premises. In most cases, the landlord is not required to pay for the changes in private living spaces. Tenants need to seek permission prior to completing modifications. Some examples of modifications include: installing an entrance ramp; modifying doorknobs to levers for someone with dexterity impairments; modifying a bathtub so that it is walk-in; allowing installation of handrails in the restroom. Owners of housing facilities may also be required to make changes to private living spaces and to common-use areas in buildings constructed after March 13, 1999. Public areas, such as the rental office, meeting room, laundry rooms, etc. should also be accessible if they are open to the public. DRWV suggests that all requests for accommodations or modification be made in writing. It is also important to note that just because a tenant requests a specific accommodation or modification, that does not necessarily mean that the request will be approved. It also should not flatly be denied. There should be discussions held about the tenant’s needs and how those needs can be met. Who pays for a reasonable accommodation? Private Housing In private housing, a housing provider/landlord may require that the tenant/resident pay for the cost of the modification and request that funds be set aside to restore the unit to its original condition before the modification (except for reasonable wear & tear). The housing provider may also request that a licensed contractor be obtained to make the modification and/or restoration, if applicable. Government Subsidized Housing In government subsidized housing (Section 504, rural development, housing set up for those with disabilities, etc.), the housing provider typically pays for the modification unless it is an undue administrative or financial burden. If you have questions or concerns about your rights as a tenant with a disability, please call DRWV at 800-950-5250 .

SUPPORTED DECISION-MAKING Do I Need to Apply for Guardianship Chart Supported Decision-Making Agreement Supported Decision-Making Handout Representation of Protected and Incapacitated Persons

ANNUAL REPORT 2024 Disability Rights of West Virginia On behalf of the staff and Board of Directors of Disability Rights of West Virginia (DRWV) I am proud to highlight the outcome of some of our work in advocating for and protecting the rights of individuals with disabilities in 2024. Through our collective efforts, we have continued to push for greater inclusion, accessibility, and equality within our communities as well as uncovering and remedying instances of abuse and neglect. As always, DRWV has remained steadfast in its mission, overcoming challenges and celebrating successes that have made a meaningful difference in the lives of people with disabilities. None of these successes would be possible without our amazing staff's dedication and hard work. Their passion, commitment, and tireless efforts are the foundation of everything we do, and I extend my deepest gratitude to every team member. From the management team to advocates, attorneys, administrative staff, and Board members, I am honored to work alongside such passionate individuals who continue to inspire change and drive DRWV forward. Susan Given, MSW, LSW, Executive Director Overview Monitoring In FY 2024, DRWV conducted 393 monitorings at 176 state and private facilities and public schools. These monitorings were conducted over twelve major categories including: Intermediate Care Facilities; WV Division of Corrections and Rehabilitation; Children’s Residential Facilities; State and Private Nursing Homes; State and Private Psychiatric Hospitals; Assisted Living Facilities; Specialized Family Care Homes; Forensic Group Homes; IDD Waiver Group Homes; IDD Crisis Sites; Legally Unlicensed Care Homes; and Public Schools. Cases In FY 2024, DRWV opened 1,348 federally funded Service Requests for 980 clients . The following table shows service requests broken down by federal funding source. Special Education Related Service Requests by Federal Program: Outreach and Training DRWV set up our outreach display at thirty-four events, presented a general outreach presentation forty-one times, and provided training during forty-six events (not including voting rights-see below) in FY 2024 . Access to Places and Services Late in FY 2023, the parent of a student with a disability requested DRWVs assistance with getting the local education agency (LEA) to make the playground at his school accessible. DRWV conducted an accessibility study of the school's playground and found it to be inaccessible. DRWV advocated for a ramp, an accessible swing, and an accessible surface to be installed. As the direct result of DRWV’s guidance, the LEA constructed a new ramp, added an accessible swing, and added a surface that meets ADA guidelines. The client and others with mobility limitations are now able to use the playground. Another accessibility study was completed in a Junior/Senior High School due to a complaint. A parent of a student who uses a wheelchair reported concerns about the parking spaces, including signage, restroom access, and use of the platform lift. As a result of DRWV’s intervention, the student received the key to the lift that she was supposed to have. The LEA added a van accessible site to the accessible parking spaces, as required. In addition, the restroom now has self-closing hinges, allowing the client to access the stall. A client with a mobility impairment requested assistance getting a local store to provide an accessible entrance. DRWV conducted an accessibility study of the business, a national chain store that is used for grocery shopping by many local residents. DRWV then sent a letter of complaint to the business's corporate office and communicated with their in-house attorney regarding accessibility concerns with the entrance to the location. As a result, the business's corporate office hired a contractor to replace the entrance door closures and reduced the opening/closing force to five pounds of pressure, which is compliant with ADA regulations. Assistive Technology A grandmother requested assistance with getting the school to continue to allow the client access to his Augmentative and Alternative Communication (AAC) device while at school. DRWV communicated with the Special Education Director and reviewed records and DRWV advocated for the client to use his primary communication tool at school. The school agreed that the client's communication tool will be his AAC device. He will use other tools only as needed for instruction and therapy, but in AAC device. The staff will be trained by the company who designed the AAC device so that they will become more comfortable using it. Education The mother of a student with a disability requested assistance with getting the school to provide visual services in order to provide a free and appropriate public education (FAPE) to the student. DRWV attended an Individualized Education Program (IEP) meeting with the student and mother and advocated for changes to the IEP. DRWV communicated with the WV Department of Education (WVDE) regarding concerns about the school. DRWV initiated training between the WV Schools for the Deaf and Blind and the Local Education Agency (LEA). As a direct result of DRWV’s involvement, the student's restrictions were removed from the IEP, he began receiving additional vision therapy, orientation, and mobility services, he began attending school for full instructional days, and the school he began to attend received training by the WV Schools for the Deaf and Blind. He also received compensatory education and was approved for a 1:1 aide. Another mother of a student with a disability contacted DRWV to help better understand her son's rights to FAPE. After further communication with the mother, DRWV reviewed records, attended meetings, advocated for the student to have a nurse aide, and to have an appropriate changing room in the school. Because of DRWV's advocacy, the student was approved to receive a nurse aide. The school also purchased an appropriate changing table and provided a private room for changes. The student is now able to attend school in person. Employment/Transition Planning A mother of a student with a disability requested any information about any services the client could be eligible to receive in order to prepare him for life after high school. DRWV contacted the WV Division of Rehabilitation Services (WVDRS) to see what services had been provided and what the client may be eligible for in the future. DRWV encouraged the WVDRS counselor to communicate with the client's mother via e-mail when information gets sent home with the client from school to ensure she is receiving it. DRWV also provided the client's mother several websites for guidance concerning questions about transportation, Selective Service, and transitioning from high school to employment. As a result of DRWV’s advocacy, the WVDRS counselor began planning future pre-employment experiences and skills camps and plans to communicate with the client's mother via email when services are being offered in the future. Hospital Discharge Planning/ Least Restrictive Environment In FY 2022, client with a serious mental illness who was known to DRWV and had been in an institution for approximately thirteen years requested assistance with getting discharged from a private psychiatric hospital. DRWV worked for a year and a half with the hospital to ensure appropriate referrals were being made. When the client was denied acceptance to all of the placement options potentially available to her, DRWV worked with the state and the hospital to move through the process for client to access “Special Project” funding. The needed assessments and steps were completed and the state entered into a contract with a service provider to provide 24/7 staffing to her in her own apartment. DRWV urged the hospital to supply information to the service provider regarding strengths, triggers, and effective strategies for ensuring a successful transition, which the hospital did. The hospital also made referrals for appropriate services in the community, such as therapy, medication management, primary care, etc., and provided information to the provider about upcoming appointments which were already scheduled. As a direct result of DRWV’s advocacy efforts, the client was successfully discharged to an apartment in the community with staff to assist her in transitioning and living independently. She began to flourish in this less restrictive residential setting. Individual Rights A client requested representation at a hearing to terminate his guardianship. He was concerned about his appointed attorney. DRWV communicated with the Case Manager and confirmed that the client had a guardianship hearing scheduled and that he had a psychological done. DRWV provided guidance to the client about his concerns and the process. The client also explained the evidence he had prepared. The client reported that he prevailed at hearing and the guardianship was terminated. Medical Treatment A client in a state prison requested assistance with getting appropriate medical care for his kidneys and diabetes while in prison. DRWV provided advocacy related to the client’s appropriate medical care. As a result, the client was seen by a Nephrologist, evaluated for potential kidney transplant, and started on dialysis. PAVA/Voting DRWV assisted 130 clients with registering to vote or updating their voter registration and assisted fifty-four clients with requesting and/or understanding absentee ballots in FY 2024. In FY 2024, DRWV staff conducted full accessibility studies of the external access to 226 polling sites in ten counties in WV. The most common Americans with Disabilities Act (ADA) violations were: lack of van accessible parking spaces and/or adjoining access aisles; parking signage displayed at the improper height or missing altogether; unstable surfaces on access routes; inaccessible door hardware; and ramp slope exceeding ADA standards and did not have a proper railing system. DRWV has or will follow up on each violation per our written process. Advocates revisited ninety-three sites in seven counties to check for progress on making corrections to polling places where violations were found in previous FYs. Some of the sites were visited on Election Day. DRWV conducted voting rights training during monitoring visits at several types of facilities serving individuals with disabilities in FY 2024. At least nine individuals with mental illness and four staff were trained at psychiatric facilities. Seventeen residents and seven staff in Assisted Living Facilities were trained. Thirty-nine residents and twenty-one staff in nursing homes were trained. Eight inmates and two staff were trained in a jail. At least 198 people with IDD, 158 staff and other providers, and four legal guardians were trained during home visits and monitoring at intermediate care facilities for individuals with intellectual disabilities (ICFIID), Specialized Family Care Homes, Waiver group homes, intensively supported settings, family homes, day habilitation sites, and a sheltered workshop. DRWV developed a very proactive and positive relationship with an election staff at one County Clerk's office. This relationship was instrumental in getting individuals in a state psychiatric hospital registered to vote and/or updating their voter registration. It enabled any issues or obstacles to be addressed in a timely manner to ensure that people were able to vote in the primary and general elections. Systems Work A Senior Advocate met with the Clinical Services Director at a state psychiatric hospital and reviewed the Elevatus Curriculum. The Curriculum is an evidence-based and trauma-informed program that is guided by theories and practices that have a history of demonstrating positive results, including: Sexual Script Theory, Self Determination Theory, Social Learning Theory, and Social Impact Theory. The Curriculum fully incorporates disability rights, independent living, and self-advocacy. It was designed to set the standard for sexual education for adults with developmental disabilities and provides opportunities for participants to practice skills that promote self-advocacy, communication, healthy relationships, sexual health, and abuse prevention. The Director indicated that they would be purchasing the product to incorporate the program into group as well as individual therapies at the state psychiatric hospital. DRWV met regularly with the WV Bureau for Medical Services (WVBMS) to discuss individuals on the Medicaid Intellectual/Developmental (IDD) Disability Waiver program who were institutionalized in psychiatric hospitals. These meetings serve to share information about these individuals and plan for discharges back into community settings. The goal is that by increasing communication between the agencies we can address and/or plan for any possible systemic barriers that may impede discharge. Additional meetings were held with the State’s IDD Coordinator to try to enhance services to this population and build transition services into community placements. In February 2024, DRWV followed the progress of House Bills (HB) 5158 and 5262 during the 2024 Legislative Session. These bills both impacted the education of students with disabilities. DRWV’s Legal Director communicated with Legislators including an attorney for the Senate about these bills. The purpose of HB 5158 was mainly to clean up the statutory provisions related to special education. The purpose of HB 5262 was to establish a Teacher Bill of Rights and essentially permitted a teacher to remove students from their class when they alone deem them to be ‘disruptive’. Neither bill passed after DRWV and other stakeholders provided technical assistance and raised concerns about the proposals. DRWV continued to participate in a collaboration with state level entities and other interested parties in regard to discharge planning for inmates with disabilities who have more complex mental health/behavioral issues including dementia, specifically in regard to their release back into the community. These meetings serve to troubleshoot and staff situations involving residents of the WV Division of Corrections and Rehabilitation (WVDCR) facilities. WVDRC’s contract psychiatric service provider as well as the WV Department of Human Services (WVDoHS) are a part of this collaboration. This group meets on a bi-monthly basis and addresses both systemic issues and individual cases that have come to the attention of the group either through WVDCR or Psi Med, the psychiatric service provider. DRWV’s partnership with stakeholders led to increased communication and teamwork. WVDCR and Psi Med regularly reach out to DRWV for assistance with justice involved individuals for whom planning for discharge from a carceral setting is difficult. At times this leads to a case being opened or DRWV providing input as to the least restrictive environment to be considered as a discharge option. Often, a lack of adequate and available home and community-based services led to an individual’s interaction with law enforcement that resulted in incarceration. Working together, this committee pulls in other stakeholders and helping professionals to collectively explore options so that individuals with disabilities who are involved with the criminal justice system receive the services they need to be successful living in the community or to transition to a less restrictive setting. A topic of concern addressed in FY 2024 was how to get those with an IDD evaluated for IDD Waiver while in prison and Psi Med’s potential role in that process. Others attending these meetings include: WVBMS, Bureau for Behavioral Health (BBH), and Adult Protective Services (APS) as well as a forensics expert. D RWV became a member of the Adverse Childhood Experiences (ACEs) Coalition in FY 2024. The Coalition "includes over 400 different organizations and individuals working together to improve the health and well-being of all West Virginians by reducing the impact of ACEs and preventing their occurrence." DRWV participated in one Coalition meeting and one Legislative Task Team meeting in FY 2024. DRWV contributed ideas for ACEs Awareness Day held November 10-12, 2024, during the Legislature’s interim session. This event will invite lawmakers to learn more about ACEs, their impacts, and how adverse experiences can be prevented. DRWV also contributed to planning for Advocacy Day to take place April 1, 2025, at various locations in and around the Capitol Complex. This is an active collaboration and advocacy opportunity for DRWV to help disseminate information to prevent disabilities as well as ameliorate the interplay of ACEs and disability in individuals’ lives. Other Notables DRWV submitted letters of support for: WV application for participation in The Link Center’s Policy Academy WV Department of Transportation’s application for a Planning Grant through the Reconnecting Communities Pilot Program for the 3rd Street Rail Underpass Community Connection Project in St. Albans, WV The WVUCED’s Transition for Youth with Autism in Rural Appalachia Demonstration Project WV REACHback Reentry Navigator program for the Appalachian Regional Commission’s INSPIRE grant DRWV’s Executive Director signed on with NDRN, other P&As, and advocacy groups to the following concerns in FY 2024: Food and Drug Administration’s Proposed Ban on Electrical Stimulation Devices, Docket No. FDA-2023 N-3902 Sec. 722 of the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act, 2025 Transformation to Competitive Integrated Employment Act (S. 533 / H.R.1263) H.R. 7513, S.3410, H.J Res 139 related to Centers for Medicare & Medicaid Services setting staffing standards for facilities US Census Bureau Standard Operating Procedures pertaining to disability data collection Supporting the 2024 2024 Disability Presidential Candidate Questionnaire Letter to CNN presidential debate include ASL interpreters, essential accessibility features, and a question that addresses the experiences of people with disabilities

VOTING A Voter's Guide to Federal Elections U.S. Election Assistance Commission guide ADA Checklist for Polling Places A checklist designed to help voting officials determine whether a polling place has basic accessible features needed by most voters with disabilities. Election Protection – West Virginia Election Information Includes details about election dates, registering to vote, and frequently asked questions about voting in West Virginia. GoVoter.org The National Technical Assistance Center for Voting and Cognitive Access assists protection and advocacy systems, election officials and people with disabilities to make voting accessible for all citizens. Guide to the Voting Rights of People with Mental Disabilities A guide from the Bazelon Center for Mental Health Law and National Disability Rights Network. League of Woman Voters From the Equal Rights Amendment to pay equity to CEDAW, the League has been a consistent champion for women's equal rights. National Association of the Deaf: Making Polls Accessible to Deaf and Hard of Hearing Voters This information is provided to help State and local governments carry out this responsibility and to outline actions that State and local governments should take to make voting accessible to people who are deaf or hard of hearing. Hearing voters can benefit from these measures as well. Nonprofit VOTE: Engaging America's nonprofits in voting and elections Nonprofit VOTE partners with America's nonprofits to help the people they serve participate and vote. Restoring the Right to Vote Brennan Center for Justice at New York University School of Law Right to Vote Project leads a nationwide campaign to restore voting rights to people with criminal convictions. Suggested Practices to Improve Accessible Voting A document from the Research Alliance for Accessible Voting. The Americans with Disabilities Act and Other Federal Laws Protecting the Rights of Voters with Disabilities This document provides guidance to states, local jurisdictions, election officials, poll workers, and voters on how the Americans with Disabilities Act and other federal laws help ensure fairness in the voting process for people with disabilities. U.S. Election Commission's Quick Start Guides The Quick Start Guides are created to assist state and local election officials in effectively managing and administering elections. Each Quick Start Guide offers concise and easy-to-read tips on a wide range of timely topics impacting the field of elections. Voting as an Ex-Offender This is a short up-to-date state guide to voting for ex-offenders from Nonprofit VOTE. West Virginia Secretary of State Voter Information Center Includes links to information about voting in West Virginia. WV Secretary of State – Am I Registered to Vote? Online tool for checking your voter registration status and polling site. WV Secretary of State Election Complaint Form The form to file an election-related complaint with the Secretary of State. WV Voter Registration On this page, you can register to vote or update your voter registration.

2021 DRWV NEWSLETTERS January 2021: Emergency Medical Services (EMS) Communication Visor Card February 2021: Successful Client Resolutions of 2020 March 2021: Traumatic Brain Injury April 2021: Employment Rights of People with Disabilities May 2021: Assistive Technology June 2021: Service Animals: More than Pets for People with Disabilities July 2021: Housing Accommodations and Modifications for People with Disabilities August 2021: The Pandemic and Special Education: The American Rescue Plan Act September 2021: Representative Payee Program for Beneficiaries of Social Security October 2021: Reasonable Workplace Accommodations for Employees with Disabilities November 2021: Voting Rights for People with Disabilities December 2021: The Medley Hartley Advocacy Program

REGISTERING TO VOTE Answers to Your Questions To vote in the next election you must register to vote! I cannot remember if I am registered to vote; how can I find out? To find out if you are already registered to vote, you can: call your County Clerk’s office, or Visit the website: https://services.sos.wv.gov/Elections/Voter/AmIRegisteredToVote When do I have to register to vote? You may register at any time. However, to be eligible to vote in a specific election, you must register 21 days before that election. Am I eligible to register to vote? You must be: A resident of West Virginia and the county where you register, A U.S. Citizen, At least 17 years old and 18 before the next general election, and Not currently under conviction for a felony, including probation or parole, or a court ruling of mental incompetence. Voting rights are restored when the term of conviction ends. Am I eligible to vote if I am under Guardianship? You are eligible to register and vote unless a Judge has specifically ruled you mentally incompetent or specifically ruled that you have lost your voting rights in a final order. How do I Register to Vote? You may register online, in person or by mail. You must fill out the registration form, and provide valid identification. If you choose to register by mail, then you must provide a copy of your identification with the registration form or the first time you vote.If you mail this registration form, valid identification includes: A current & valid photo ID with current residence address, or A copy of a current utility bill, bank statement, government check, paycheck, or other government document that shows your name and current residence address. How can I register to vote online? You may register to vote online if you have a West Virginia driver’s license or state issued ID card: https://ovr.sos.wv.gov/register Where can I get the registration form, if I plan to register by mail? Where do I mail it? You may download the registration from this website: http://www.sos.wv.gov/elections/ Mail your registration form to your County Clerk’s office. Where can I register to vote in person? Your County Clerk’s Office. Driver license offices Public assistance agencies Agencies which serve people with disabilities Military recruiting offices The Motor Voter program at your local Department of Motor Vehicles office If it is close to an election, registering at the county clerk’s office is the best place to go to be certain you will be on the books on election day. How do I know that I am registered? Visit https://services.sos.wv.gov/Elections/Voter/AmIRegisteredToVote , or call your County Clerk’s office. Where is my County Clerk’s Office? The phone numbers of West Virginia’s County Clerk’s offices are listed at http://www.sos.wv.gov/elections/ Who do I ask if I need help? Visit http://www.sos.wv.gov , Call or Visit your County Clerk’s office, or call Disability Rights of West Virginia.

REPRESENTATION OF PROTECTED AND INCAPACITATED PERSONS Incapacitated means the person is incapable of handling his or her medical, financial or personal affairs. A protected person is someone who, through a legal process, has been deemed to be incapacitated. Appointed by Court Conservator (W. Va. Code §44A–1–8) Manages the estate and financial affairs of a protected person. May be “limited” (W. Va. Code §44A–2–12) or “temporary” (W. Va. Code §44A–2–14). Pays bills; responsible for bank account(s); may buy and/or sell real and/or personal property. Cannot be held personally responsible by creditors for the protected person’s debts, such as medical bills. Must file periodic reports with the court unless the court waives the reporting requirement. Guardian (W. Va. Code §44A–1–8) Responsible for the personal affairs of a protected person. May be “limited” (W. Va. Code§44A–2–11) or “temporary” (W. Va. Code §44A–2–14) Makes financial, medical and other miscellaneous decisions, such as residency. Cannot be held personally responsible by creditors for the protected person’s debts, such as medical bills. Court may appoint separate Conservator. Must file periodic reports with the court unless the court waives the reporting requirement. Guardian Ad Litem (W. Va. Code §56–4–10) Attorney appointed by the court to represent a minor child or an individual who is mentally disabled. May be appointed temporarily until another more permanent resolution is decided upon, such as Guardian and/or Conservator. Duty to faithfully represent the interests of the individual for whom he or she is appointed. Cannot be held personally responsible by creditors for the protected person’s debts, such as medical bills. If appointment lasts for an extended period of time, must file periodic reports with the court unless the court waives the reporting requirement. Appointed by the Individual (Principal) General Power of Attorney (POA) (W. Va. Code §39B–1–101) A notarized, or otherwise acknowledged, written document. Takes effect immediately unless the document clearly states otherwise. May be “durable” or “non-durable”; however, POA presumed to be “durable” (i.e., not terminated by the principal’s incapacity) unless the document clearly states otherwise. POA may make financial, medical and other miscellaneous decisions on behalf of the principal as specified in the document of appointment. POA is a mechanism that may be easily exploited to take advantage of the principal. Important that the POA is someone in whom the principal has complete trust. Cannot be held personally responsible by creditors for the principal’s debts, such as medical bills. Existence of a POA “may eliminate, limit or supersede the need for the assistance or protection of a Guardian or Conservator, and any person so appointed [POA] is to be the first preferred nominee for Guardian or Conservator.” (W. Va. Code §44A–1–3) Living Will (W. Va. Code §16–30–6) A written document which must be witnessed when signed. Dictates decisions about the principal’s health care if he or she is unable to communicate those decisions to health care personnel. May be a good option for a principal who believes that no one else can be trusted to carry out his or her wishes. Cannot take into account all of the circumstances that may exist at the time the Living Will is needed, including advancements in medicine since its signing. A Living Will “may eliminate, limit or supersede the need for the assistance or protection of a Guardian or Conservator, and any person so appointed [by the Living Will] is to be the first preferred nominee for Guardian or Conservator.” (W. Va. Code §44A–1–3) Medical Power of Attorney (MPOA) (W. Va. Code §16–30–6) A written document which must be witnessed when signed. If the principal becomes incapacitated, grants authority to another person to make health care decisions on behalf of the principal. MPOA has the right of access to the principal’s medical information and the right to discuss that information with the principal’s health care providers. Cannot be held personally responsible by creditors for the principal’s debts, such as medical bills. Existence of a MPOA “may eliminate, limit or supersede the need for the assistance or protection of a Guardian or Conservator, and any person so appointed [MPOA] is to be the first preferred nominee for Guardian or Conservator.” (W. Va. Code §44A–1–3) The following persons may not serve as MPOA or successor MPOA: the principal’s treating health care provider; an employee of the treating health care provider who is not related to the principal; the operator of a health care facility serving the principal; or an employee of the operator of a health care facility serving the principal who is not related to the principal. (W. Va. Code §16–30–4(c)) Appointed by Medical Provider Medical Surrogate (W. Va. Code §16–30–8) Must first inquire as to the existence and availability of a MPOA or Guardian. Statute includes list of priorities regarding who may serve. Selected by the attending physician or advanced nurse practitioner to make health care decisions on behalf of an incapacitated person. Least favored form of making health care decisions because the individual does not choose the surrogate, rather the attending medical provider does. Cannot be held personally responsible for the incapacitated person’s debts, such as medical bills. The existence of a Medical Surrogate “may eliminate, limit or supersede the need for the assistance or protection of a Guardian or Conservator, and any person so appointed is to be the first preferred nominee for Guardian or Conservator.” (W. Va. Code §44A–1–3) Legal Disclaimer All information contained within this document is general legal information and does not constitute legal advice. West Virginia Advocates, Inc. does not warrant or guarantee the accuracy of the information as laws are subject to change. You are encouraged to seek advice from an attorney to insure that the information is up to date and accurate. Funding Funding for this publication is provided by the Rehabilitation Services Administration, the Administration on Developmental Disabilities, and the Substance Abuse and Mental Health Services Administration. Published by Disability Rights of West Virginia (DRWV). Content is solely the responsibility of DRWV and does not reflect the official views of the funding agencies. Version 2.0 Representation of Protected and Incapacitated Persons (PDF)

WEST VIRGINIA EARLY AND PERIODIC SCREENING, DIAGNOSIS AND TREATMENT Publication Provided By Disability Rights of West Virginia Download the EPSDT Booklet in PDF . HealthCheck is the name of West Virginia’s Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program. What is the EPSDT Program? The EPSDT program is Medicaid’s comprehensive and preventive child health program. EPSDT serves any child receiving WV Medicaid from birth up to twenty-one (21) years of age. The EPDST program provides: regular health exams; immunizations; and vision, dental and hearing check-ups. How Can I Get EPSDT Services For My Child? In order for your child to receive services under EPSDT, an appointment for an initial examination must be made with a medical provider that accepts WV Medicaid. This can include physicians, nurse practitioners and physician’s assistants. If your child needs a service, the medical necessity for that service MUST be documented as a part of the EPSDT screening exam on the EPSDT form. Screening services required by the Medicaid Act with oversight provided by the Centers for Medicare and Medicaid Services (CMS) include: Comprehensive health and developmental history Comprehensive unclothed physical exam Appropriate immunizations Laboratory tests Lead Toxicity Screening Health Education Vision Services Dental Services Hearing Services Other Necessary Health Care You should schedule an EPSDT screening exam for your child at your earliest convenience so that his/her medical needs can be met. You might want to take this booklet with you when you meet with your child’s physician. The physician can get more information about services available under EPSDT by contacting the HealthCheck program at 1-800-642-9704 or by visiting the HealthCheck website at http://www.wvdhhr.org/mcfh/ICAH/healthcheck/. Should your child’s physician order services and they are denied, you will receive a written denial from the West Virginia Department of Health & Human Resources (WVDHHR). The written denial should explain what was denied and the reason. It should also contain an explanation of your right to appeal the denial and instructions how to do that. Please call West Virginia Advocates to see if we may be able to provide assistance. What Services Can EPSDT Provide? Services available through EPSDT for children with and without disabilities include many home and community based services: assistive technology; mental health services; home health services; medical equipment and supplies; personal care; skilled nursing; private duty nursing; physical and related therapies; and rehabilitative services. NOTE: If your child has been found eligible for the WV Title XIX ID/DD (formerly known as the MR/DD) Home and Community Based Waiver Program but was placed on a wait list, and is currently eligible for WV Medicaid, the EPSDT program should be able to meet many of your child’s needs until a slot opens on the Waiver Program. A child already eligible for Medicaid who is NOT found eligible for the Title XIX ID/DD Waiver program can receive many of the same services through the EPSDT program that they would receive from the Title XIX ID/DD Waiver Program. What Are Rehabilitative Services? One of the most important services available under EPSDT are the rehabilitative services. Rehabilitative services were added to Medicaid in 1967 and are defined as: “any medical or remedial services (provided in a facility, a home, or other setting) recommended by a physician or other licensed practitioner of the healing arts within the scope of their practice under State law, for the maximum reduction of physical or mental disability and restoration of an individual to the best possible functional level.” Depending on the need, rehabilitative services can include a range of services such as: basic living skills to restore independent function in the community including food preparation, maintenance of living environment, and/or mobility skills; social skills to develop skills needed to enable and maintain community living, including communication and socialization skills and techniques; and counseling and therapy to eliminate psychological barriers that impede development of community living skills. Do EPSDT Services Have Limits? EPSDT should cover the services to the extent the child needs them when the services are necessary to improve or correct the child’s condition. NOTE: Services deemed necessary under EPSDT can exceed a limit set by the state even if the state places a quantitative limit on the service (such as twenty (20) visits per year for physical therapy). Services not covered by Medicaid for adults could be covered for anyone who is eligible for EPSDT. Funding Published by Disability Rights of West Virginia. Content is solely the responsibility of Disability Rights of West Virginia and does not reflect the official views of the funding agencies. Funding for this publication is provided by the Rehabilitation Services Administration, Office of Special Education and Rehabilitative Services, U.S. Department of Education; Health Resources and Services Administration, U.S. Department of Health and Human Services; Administration on Developmental Disabilities, Administration for Children and Families, U.S. Department of Health and Human Services; Substance Abuse Mental Health Services Administration, Center for Mental Health Services. Version 2.1, August 2011

BOARD OF DIRECTORS List of Directors Sarah Rhein , President Christina Jumper, President Elect Andrew Holston, Treasurer Cathy Reed. MAL Vanessa Cain Karen Corrigan Emilee Dearing Whitney Price Sheila Radochio Susan Given, Executive Director Board Application Packet (PDF Format) Board of Directors Application Packet Board of Directors Application Form

NEWS LETTER February Disability Rights of West Virginia Assistive Technology for People with Disabilities 2022 Article by Regina Desmond, DRWV Senior Advocate Assistive Technology (AT) enhances the lives of people with disabilities. AT promotes greater independence by helping people perform tasks that they may otherwise be unable to do. AT is any item, piece of equipment, software program, or product system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. One of Disability Rights of WV’s federally funded programs is Protection and Advocacy for Assistive Technology (PAAT). Through PAAT, an Advocate or Staff Attorney can assist people with disabilities with gaining or maintaining access to assistive technology and related supports. While DRWV cannot fund any devices or equipment, our staff can assist you with navigating health insurance and/or other funding options. Below are examples of assistive technology, durable medical equipment, or related services that DRWV has assisted our clients with obtaining: Independent Housing - Durable Medical Equipment Obtaining vent filters for the client's tracheostomy Acquiring an ultraviolet (UV) light system Repair of a motorized wheelchair Obtaining a letter of medical necessity for a new adjustable hospital bed reimbursement of over $550.00 for a power lift chair Reimbursement of over $550.00 for a power lift chair Independent Housing - Community Access Ensuring there was an accessible entrance to an apartment building Obtaining required paperwork for transportation by ambulance to all medical appointments Employment Advocating for the WV Division of Rehabilitation Services (WVDRS) to arrange and pay for an appointment with a retina specialist to be evaluated for specialized glasses Ensuring that an employer provided access to screen reader software as recommended by WVDRS State and Private Psychiatric Hospitals Installation of a ligature resistant grab bar with a “V” shaped closure strip for the client's restroom. Due to the client’s disability, they needed a specialized grab bar Assuring a client has access to their AFO brace, shoes, walker, and dentures access to prescription glasses, hearing aids, wheelchairs and CPAP machines State and Private Nursing Facilities Assuring access to a bariatric wheelchair with adjustable footrests, based on Physical Therapist's recommendations Requesting that a battery terminal be cleaned on a motorized wheelchair so it would keep charge Advocated for proper cleaning and use of a client's CPAP machine Advocated for access to an eye gaze communication device If you would like to speak with Disability Rights of WV about access to assistive technology, durable medical equipment, or related devices, please contact us at: (800)950-5250 or contact@drofwv.org. Client Comments Why we do what we do Thank you for everything. The advocate I worked with was so helpful and positive. I wish you good luck in helping others . Have an amazing year! Love you all!

THANK YOU TO OUR GENEROUS SUPPORTERS! Mr. and Mrs. Robert L. Hardesty