DRWV 2024 Annual Report | Disability Rights | Disability Rights of West Virginia

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:

Individuals with Serious Mental Illness in WV: 150,000 hours

Individuals with Intellectual/Developmental Disabilities in WV: 33,000 hours

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.

DRWV 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