2023 DRM ANNUAL REPORT In 2023, Disability Rights Maine held an art contest to center the creative energy of Maine’s disability community in connection with our annual Disability Pride event. The cover art winner is Jelisa Hamilton. She described her submission as follows: “My artwork celebrates the aspects of inspiration, growth, and resilience. I am a visually impaired artist, and my lifelong impairment worsened, resulting in the loss of over 90% of my sight several years ago. Art has been my passion for as long as I can remember. When I lost my sight, I thought that it was the end of my creativity. With the love and support of my fiance, I was able to find ways to adapt with magnifiers, working in very close proximity to my paintings. By adjusting my process I could continue my journey of expressing myself artistically. I created this piece utilizing my digital drawing tablet with a 65” monitor with access to the total magnification available. This piece is called “A New Day” and I created it to be a vibrant reminder that there is beauty in every moment, and while some of us face challenges, we can celebrate the hope and grace that each new day brings. In every new day, we have a chance to shine, grow, flourish, and inspire others with the life we live.” LETTER FROM THE ED Dear Friends and Colleagues: I am pleased to present Disability Rights Maine’s 2023 Annual Report, which provides a snapshot of the impactful work undertaken by DRM over the past year. DRM continued to grow this year, with the addition of a new and innovative youth self-advocacy project. This pilot, shaped by a team of self-advocate trainers, is building community and advocacy skills statewide. I am truly inspired by their hard work and dedication. I am extremely optimistic about the new generation of leaders in the disability civil rights movement. In addition to our important legal advocacy work, self-advocacy and movement building are the foundation of DRM. DRM attorneys and advocates fight every day for the rights of people with disabilities. We also lift up the voices of Maine people with disabilities and we speak up for people when they ask us to. We must continue this work. In 1990, we celebrated the passage of the ADA. In 1999, the Olmstead decision said it was discriminatory to segregate and isolate people based on disability. Yet, decades later, we continue to fight for inclusion in nearly every aspect of life. I am proud to work at DRM among an amazing group of dedicated, passionate people, to advance justice and equality for Maine people with disabilities. We will not stop fighting for a more inclusive Maine. Thank you to our board, and particularly our outgoing Board President, Simonne Maline, who helped steer DRM for the past three years. We are grateful to our funders, partners, and supporters who make this work possible and to our clients, who push us every day. Sincerely, Disability Rights Maine is supported by funding from: the Administration on Disabilities the Center for Mental Health Services the Rehabilitation Services Administration the Social Security Administration the State of Maine Acadia Hospital the Maine Civil Legal Services Fund Commission the Maine Health Access Foundation the U.S. Department of Justice Office on Violence Against Women private donors To learn how you can aid the work of DRM, visit: www.drme.org/donate Available in alternative formats upon request 3 ACCESS TO THE POLLS During the November 7th, 2023 Referendum Election, DRM partnered with the League of Women Voters of Maine to monitor polling places for accessibility. Under federal law, polling places must be accessible to all people with disabilities. DRM created a survey for staff and volunteers to complete at each polling place. DRM adapted the questions from a resource developed by the U.S. Department of Justice. The survey asked staff and observers about: • Availability and condition of accessible parking; • Curb ramps; • Walkways/sidewalks; • Ramps; • Accessible entrances; and • The interior route through the polling place. The survey also asked respondents to detail the positioning of the “Accessible Voting System,” or AVS, a legally required machine that must be present and functional in every polling place. The AVS allows voter with disabilities to vote privately and independently. The surveys identified accessibility barriers in 49% of the polling places visited. Surveys noted poor infrastructure, lack of signage for the accessible route, and poor positioning of the AVS as the most common barriers. Examples of poor infrastructure included: • Faded paint markings for accessible parking spaces; • Crumbling asphalt; and • Broken push buttons on doors. When the main entrance of a polling place is not accessible, signs directing voters to the accessible route are required. Many polling locations lacked the proper signage. Staff noted significant issues with the privacy and availability of the AVS. More than 20% of polling places visited did not have their machines arranged to protect voter privacy. Further, four machines did not have the AVS readily available for voters to use, in violation of federal law. To address the findings, DRM shared a report with the Secretary of State, who acted immediately. DRM and the Elections Division then collaborated to deliver a training for Town/City Clerks on election accessibility and best practices for interacting with voters with disabilities. DRM will be working hard through the remainder of the 2024 election cycle to ensure all polls are accessible. GUARDIANSHIP REFORM Disability Rights Maine continues to make guardianship reform a priority, both systemically and through individual cases. DRM’s goal is to ensure that Maine’s 2019 Probate Code is followed so that individuals subject to guardianship, or at risk of going under guardianship, are guaranteed their fundamental rights. The new Probate Code marked a pivotal shift in how Maine empowers and supports individuals in the adult guardianship system. DRM’s guardianship work underscores the importance of having an attorney to ensure that individuals can enforce their rights in guardianship proceedings. Limiting Lucy’s Guardianship “Lucy” contacted DRM after her guardians withheld her food stamp card. A DRM attorney utilized a new process that allows people under guardianship to file grievances in court. As a result of the grievance, the Court limited the guardianship, thus affirming Lucy’s right to control her food stamp benefits. Ensuring Autonomy for Cooper Maine’s Probate Code explicitly requires that guardians promote self-determination of individuals and involve them in decision-making. In a contentious guardianship case, “Cooper” enforced these provisions when his guardian insisted on moving him to a new home; a move Cooper adamantly opposed. DRM filed a grievance asking that the court stop the move, and end the guardianship. Thereafter, tensions escalated as the guardian attempted to physically compel Cooper to move, prompting police intervention. Ultimately, the judge affirmed Cooper’s autonomy, and ordered that the guardian could not physically compel him to leave his home and move to a new one against his will. Soon after, the guardianship was terminated, and Cooper now makes his own decisions using supported decision-making. Combating Discrimination for Kai & Maggie Individuals with unique communication abilities are often incorrectly regarded as needing guardianship, especially if they don’t communicate verbally or in a recognized language like American Sign Language. There appears to be slow progress in how courts approach guardianship cases involving people who use alternative communication methods. DRM represented “Kai”, an individual who communicated mostly through gestures. Before DRM’s intervention, Kai had been completely excluded from court proceedings, forced to wait in the courthouse hallway during a guardianship hearing about them. The DRM attorney ensured Kai’s inclusion in the process, and even called them as a witness to give testimony using gestures. In another case, DRM represented “Maggie” who relied on a communication device. With DRM’s assistance, Maggie participated in court proceedings using their device, ultimately leading to the termination of their guardianship. Without legal representation, these fundamental rights would not have been enforced. DRM continues to advocate for changes in the law that require the mandatory appointment of attorneys in guardianship court proceedings. RESPONDING TO LEWISTON On October 25, 2023, a mass shooting took place in Lewiston, Maine that left 18 people dead and 13 injured. The horrific violence and loss of life rocked the Lewiston-Auburn community, and the entire state, to its core. Maine’s Deaf community bore an especially heavy toll; four Deaf community members were killed, while several others survived. In the wake of this tragedy, Maine’s Deaf community, small and close-knit, was left reeling. These losses cut deeply, and rippled out across the state, and nation, through the many people their lives had touched. The events in Lewiston are believed to have been the first mass shooting with multiple Deaf victims and injuries. This led to an unexpected spotlight being thrown on Maine’s Deaf community. The aftermath of the shooting became a microcosm of larger structural failures to ensure Deaf and Hard of Hearing inclusion and communication access, particularly in emergency situations. First responders lacked awareness and tools on how to work with Deaf victims and survivors. Hospitals did not reach out to local ASL interpreting agencies to request ASL interpreters on-site for Deaf victims. Initial press conferences lacked American Sign Language interpreters. Captions were sometimes available, sometimes not. When interpreters were added to later briefings, media crews cut them out of the frame. During a terrifying public emergency, many Deaf and Hard of Hearing Mainers were stuck relying on person-to-person information sharing. Had the shooter been caught? Who needed to shelter in place? Who was safe? Who had died? DRM’s Deaf Services team mobilized to begin identifying and addressing gaps in accessible communication, services, and resources. Advocates shared information and resources with affected Deaf community members, helped advocate for impacted Deaf individuals experiencing barriers, and were present at the FBI Victims Services Center set up for victims and families. DRM Deaf Services, together with ME Association of the Deaf, and other Deaf community leaders, met with local leaders and policy makers to discuss access barriers, service gaps and to advocate for Deaf inclusion in long-term response planning for the tragedy. With funding from ME DHHS, DRM established a pro bono interpreting fund. As DRM began receiving questions about the legal needs of survivors, we coordinated a response with Maine’s legal services providers to meet the civil legal needs of survivors and families of victims. DRM also played a key role in the development of the new Maine Resiliency Center. As local leaders shared plans for the new center, DRM provided feedback on accessibility needs that needed to be considered to make a space that was usable and welcoming to Deaf community members. DRM Deaf Services advocates continue to maintain a regular presence at the Center. As Maine continues to process the impacts and trauma of this event, the Deaf community continues to be an integral part of these conversations to ensure that communication access is not an afterthought. TRAINING MENTAL HEALTH PROVIDERS Mental health case management services play a crucial role for many individuals, yet accessing these services is a challenge. One reason for this is that providers do not have immediate openings for people seeking services. In the past, many providers maintained internal waitlists, which could not be monitored by the state. This meant that state officials did not accurately understand the gap in access to services, nor the information needed to help individuals find alternative referrals. Over the past year, the Office of Behavioral Health (OBH) worked with providers to develop a new process to better track individuals waiting for services. Providers now place individuals on a “Hold for Service” through MaineCare’s managed care provider Acentra. OBH is then able to monitor these placements. As a result of this change, DRM partnered with OBH to conduct a training session on the “Hold for Service” requirements for agencies providing community mental health services. Over 175 individuals from over 80 mental health agencies attended. DRM also educated providers on how we support individuals who make self-referrals for these services and DRM’s subsequent follow-up process with OBH. Providers of these services were trained on their responsibility to: • Accept referrals, including self-referrals; • Obtain authorization from OBH in cases where they could not provide the referral same-day service; • Place the referral who they could not serve on a “Hold for Service”; • Follow up with the referral they placed on “Hold for Service”; and • Provide the referral with information on other agencies in the area they could contact for the service. DRM also trained providers on the types of support DRM staff provides to individuals during this process. This support includes: • Assisting individuals in making self-referrals; • Providing advocacy assistance during the referral process; • Faxing confirmation letters to agencies following the initial referral; • Following up with agencies to verify the entry of the individual’s referral into the platform as a “Hold for Service;” and • Coordinating with OBH for follow-up when needed. Individuals who need help accessing these services can contact DRM online or by phone and ask to speak with a community advocate. BY THE NUMBERS DRM provided direct representation to 1135 clients in 1343 cases. DRM’s equipment distribution programs served an additional 204 clients, while information and referral services were provided to 1838 individuals. Client Disability Blindness/Visual Impairment 9 Brain Injury 30 Deafness/Hard of Hearing 58 Developmental Disability 684 Mental Illness 271 Physical Disability, Health Impairment, Chronic Illness 83 Clients by County Case Problem Area Androscoggin 169 Abuse/Neglect & Other Rights Aroostook 66 Violations 355 Cumberland 210 Community Integration 429 Franklin 11 Due Process 16 Hancock 24 Education 133 Kennebec 139 Employment 76 Knox 29 Government Services & Public Lincoln 17 Accommodations 132 Oxford 45 Guardianship 88 Penobscot 177 Housing 64 Piscataquis 14 Vocational Rehabilitation 49 Sagadahoc 16 Voting 1 Somerset 35 Waldo 32 Washington 27 York 113 Out-of-State 5 Unknown 6 Financial Summary Year Ending September 30, 2023 REVENUE AND SUPPORT Federal Grants $2,488,951 State Grants $1,640,149 Contributions $31,593 Other Revenues $274,137 Other Grants $27,650 TOTAL REVENUE $4,462,480 EXPENSES PADD $608,774 PAIMI $490,352 PAIR $228,970 PAAT $58,373 PABSS $157,036 PABRP $108,892 PATBI $40,131 PAVA $170,972 Client Assistance Program $116,059 Educational Advocacy $182,300 Psychiatric Ctr Adv $358,545 Acadia $43,660 Developmental Svc Adv $641,100 Deaf Advocacy + Comm Access Prog $584,570 OVW Grant $56,330 Innovation Grant $68,586 Health Access $37,622 Supporting Services $484,768 TOTAL EXPENSES $4,437,040 SUPPORTING SERVICES: 11% PROGRAM SERVICES: 89% 9 PROGRAMS Disability Rights Maine (DRM) is Maine’s Protection & Advocacy agency for people with disabilities. This means we represent people whose rights have been violated or who have been discriminated against based on their disability. We also provide training on rights and self-advocacy and we advocate for public policy reform. DD Advocacy provides legally based advocacy to individuals with intellectual and developmental disabilities who have experienced abuse, neglect, exploitation or who have been discriminated against based on their disability. In addition to the federal Protection and Advocacy program for individuals with diagnoses of developmental disabilities, DRM receives State of Maine funding to advocate for adults with labels of intellectual disability and autism. MH Advocacy serves individuals who have a diagnosis or label of serious mental illness. DRM provides these services statewide to individuals in the community and in institutions through federal and State funds. Protection and Advocacy for Voting Access (PAVA) is a federal program that allows DRM to represent individuals who have been denied the right to vote and to increase access to the polls for people with disabilities. Protection and Advocacy for Individual Rights (PAIR) serves individuals who have a disability and who are not eligible for either the PADD or PAIMI programs. PAIR focuses on civil rights violations under the Americans with Disabilities Act (ADA). Social Security Advocacy serves individuals with disabilities who receive Social Security Disability Income (SSDI) or Supplemental Security Income (SSI) and who want to work, return to work, or are working and need assistance with respect to benefits. DRM also monitors, investigates and reviews representative payees to prevent and detect financial exploitation or misuse of an individual’s benefits. Brain Injury Advocacy provides legally based advocacy for people who have a brain injury and who have experienced a rights violation or discrimination. Protection and Advocacy for Assistive Technology (PAAT) assists individuals with disabilities in obtaining assistive technology devices or equipment in order to live more independently, work, attend school, or meet medical needs. Children’s Advocacy State funds allow DRM to serve children with disabilities who are denied access to appropriate and inclusive educational services; have been subjected to restraint and seclusion in school; are seeking assistance with obtaining appropriate home and community services; or who are in a hospital or residential facility and have experienced abuse, neglect or violations of their basic rights. Deaf Services provides legally based advocacy to individuals who are Deaf, late- deafened, hard of hearing and Deaf-Blind; provides technology to improve communication access; provides peer support to Maine citizens who also have developmental disabilities; and provides outreach statewide to ensure that people know about communication options and access. Client Assistance Program (CAP) is a federally funded program that provides information, assistance and advocacy to people with disabilities receiving services under the Rehabilitation Act. 10 Board of Directors Andrew R. Sarapas, Esq., President Richard O’Meara, Esq., Vice President William Norbert, Esq., Secretary Ashley Eiler, Esq., Treasurer Molly Brown Karen Farber Brian Harnish April Kerr, PAC Chair Simonne Maline Abbott Philson PAIMI Advisory Council April Kerr, Chair Korali Day Melissa Caswell Jeffrey Kerr Simonne Maline Jenny McCarthy Vickie McCarty Kate McLinn, PhD Vickie Morgan Gidget Murphy Ryan M. Schmitz, Esq. Kelly Staples DRM Staff Kim Moody, Executive Director Susan Adams, Administrative Assistant Riley Albair, Program Director Michelle Ames, Program Director Caleb Baker, J.D., Advocate Jennifer Battis, Health Equity Project Coordinator Cathy Bustin, Advocate Bridget Campbell, Advocate Margaret Cardoza, Community Outreach Staci Converse, Esq., DD Director LuAnne Cori, Advocate Shannon Crocker, Chief Financial Officer Lucas Cuéllar, Esq., Staff Attorney Tammy Cunningham, Paralegal Julia Endicott, Communications Director Casey Escobar, J.D., Advocate Jared Escobar, J.D., Advocate Jaheim Franklyn, Self-Advocate Trainer Mary Green, Advocate Sheila Hansen, Payroll Assistant Mark Joyce, Esq., MH Director Linda Leighton, Administrative Assistant Barrett Littlefield, Esq., Staff Attorney Sammy-Ellie MacKinnon, MSW, Project Director Carlene Mahaffey, Advocate Megan Marquis, Advocate Thomas Minch, Advocate Jane Moore, J.D., Advocate Emily Mott, Esq., Staff Attorney Mary Myshrall, Advocate Fernand Nadeau, Information & Referral Coordinator Kile Pelletier, Self-Advocate Trainer Lisa Penney, Advocate Jeanette Plourde, Esq., Staff Attorney Christina Reese, Esq., Staff Attorney Atlee Reilly, Esq., Legal Director Peter Rice, Esq., Senior Attorney Katrina Ringrose, Deputy Director Aydan Rudolph, Self-Advocate Trainer Meghan Ryan, Program Director Megan Salvin, Esq., Staff Attorney Anna Schmidt, Advocate Susan Schroeder, Administrative Assistant Sara Squires, Public Policy Director Molly Thompson, Advocate Denise Tuggle, Advocate Kate Turpen, Project Director Kevin Voyvodich, Esq., Managing Attorney Lauren Wille, Esq., Legal Director 11 Mission Disability Rights Maine advances justice and equality by enforcing rights and expanding opportunities for people with disabilities in Maine. Vision People with disabilities must not be stigmatized, undervalued, institutionalized or excluded. Disability Rights Maine envisions a just world, without barriers, where all disabled people have power and autonomy. In this world, disabled people have full and equitable access to education, jobs, resources and community. Values DRM Board and staff believe that the disability rights movement is inseparable from the human rights movement for racial, economic and gender equity. We renew our commitment to eradicate ableism, racism, sexism and bigotry, and to dismantle institutional and structural disadvantage. 160 Capitol St, Suite 4 Augusta, ME 04330 207.626.2774 (V/TTY) 800.452.1948 (Toll-Free) 207.621.1419 (Fax) 207.766.7111 (VP) www.maineshare.org Please consider donating to support us in this mission. Donations accepted at our website. www.drme.org