2024 Annual Report
Dedication
Disability Rights Maine is honored to dedicate the 2024 Annual Report to Acacia Bernice Marquis, who passed away on September 7, 2024. Twelve years ago, DRM shared Acacia’s story as the cover story of that year’s annual report. When Acacia was in high school, MaineCare tried to reduce her nursing hours, putting her at risk of institutionalization. Acacia’s mom, an unwavering advocate, called DRM for help. Staci Converse, the Director of DRM’s Developmental Disability Program, represented Acacia at a DHHS hearing and won, which allowed Acacia to continue living in her home.
Acacia thrived as an active member of the Scarborough community, where she lived since 2001. Her favorite place was Kettle Cove. She lived a full and adventurous life and brought joy to everyone she met.
Thank you
DRM also wishes to recognize and thank Peter Rice, who retired at the end of 2024. During his decades long career at DRM, Peter represented more than 3,500 individuals in more than 4,800 cases. His work transformed access to home and community-based services, removed caps on nursing care hours, and improved accessibility statewide. Through his steadfast commitment to disability justice and legal prowess, Peter improved the lives of countless individuals.
As DRM’s Legal Director for more than 20 years, Peter served as a mentor to dozens of advocates and attorneys. In recent years, Peter dedicated most of his time to providing legal support to DRM’s Deaf Services team. Thank you, Peter!
Letter from the ED
Dear Friends and Colleagues:
I am pleased to share Disability Rights Maine’s 2024 Annual Report. This report highlights a mere snapshot of the enormous amount of impactful advocacy work undertaken by the DRM staff over the past year.
When I think about the present state of disability rights, I try to focus on the positive; on the many achievements we have realized over the past 40 years. One of the most exciting innovations coming from the disability civil rights movementis the advent of alternatives to full guardianship. Twenty-five years ago, when we first began talking about eliminating adult guardianship, it truly was an impossible goal because adults with labels of intellectual and developmental disabilities were routinely placed under full guardianship without much thought by the courts orthe families or the service system. Now, we frequently hear from families who use supported decision-making or other alternatives. People with disabilities in Maine are therefore much more able to make their own decisions about where they live and work, who they hang out with and what they do in their spare time.
Other achievements changing the lives of Mainers with disabilities include a significant reduction in the use of seclusion and restraint of people with psychiatric labels, the downsizing and closure of institutions, the elimination of paying people far less than minimum wage, the creative use of Medicaid waivers to improve the service system and to include people with brain injury, the robust monitoring of representative payees to prevent financial exploitation, and the increased access to the polls due to accessible voting sites. And many, many more people actually have keys to their own front doors and locks on their bedroom doors. We are changing the world.
And yet, I believe that disability rights advocates and attorneys are needed now more than ever to protect the rights that we have won. We must ensure that children with disabilities are educated with their peers; that abuse and neglect is discovered and stopped; that accommodations are provided so disabled people can work and get around in our communities; that home and community-based services are strong; that our people can live independently without risk of institutionalization; and that communication access is not an afterthought.
I am enormously grateful to work alongside a scrappy, smart and dedicated staff, who bring creative strategies to their work, which allow DRM to make a profound impact on the lives of the people we serve. Thank you to our Board of Directors, funders, partners, and supporters who make this work possible, and to our clients, whose steadfast commitment to disability rights drives our work forward.
Respectfully,
Kim Moody
Executive Director
Board President Andy Sarapas and Executive Director Kim Moody at Disability Pride 2024.
Our Funders
the Administration on Disabilities
the Center for Mental Health Services
the Rehabilitation Services Administration
the Social Security Administration
the State of Maine
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
DRM would like to thank the individuals, businesses and organizations whose generosity enables our work.
ThriveTogether Maine
More than 90% of people with developmental disabilities experience sexual violence in their lifetime – a frighteningly high rate. When abuse happens, only a small fraction of survivors are able to access supportive resources and seek justice for what happened to them because of numerous barriers.
To combat those barriers in Maine, Disability Rights Maine sought and was awarded funding in 2022 through the U.S. Department of Justice, Office on Violence Against Women (OVW) Discretionary Grant Program. The three-year project, “Grants for Training and Services to End Violence and Abuse Against Individuals with Disabilities and Deaf People Program (Disability Grant Program)” is designed to facilitate local, systemic, and policy change through an intensive collaboration process.
ThriveTogether Maine is the resulting collaborative and is made up of representatives from DRM, Speaking Up For Us, Maine Coalition Against Sexual Assault, and Maine Association for Community Service Providers. The goal of the collaborative is to address the organizational capacity to support individuals who have experienced sexual violence and live with Developmental Disabilities (DD) and/or are Deaf and Hard of Hearing or use visual gestural communication (VGC).
After successfully executing the planning and development phase of this project in fiscal year 2023, ThriveTogether focused its work in fiscal year 2024 on developing and implementing a comprehensive needs assessment plan.
After the plan was approved in the Spring of 2024, ThriveTogether Maine conducted 15 focus groups, nine individual interviews, and two online surveys, resulting in feedback from 186 individuals. Respondents included survivors, family members, sexual assault center staff, professionals serving adults with DD, and advocates.
The collaborative is now in the process of analyzing the results to develop a strategic plan and to implement solutions to combat the epidemic of violence experienced by individuals with disabilities. Early findings indicate that ongoing collaboration across diverse organizations, trauma-informed professional development opportunities, and accessible education about bodily autonomy will be critical to addressing barriers in both the disability service system and the sexual assault response system.
The mission of ThriveTogether Maine is to create a state where people with developmental disabilities can recognize and disclose sexual violence and where they experience a safe, knowledgeable, and affirming response by: centering the lived experiences of people with developmental disabilities, building deep relationships among disability and sexual violence victim service providers to provide holistic support for survivors, and challenging long-held norms and beliefs about people with disabilities and sexuality.
Sammy-Ellie MacKinnon, pictured, leads the project.
ThriveTogether Maine is supported by Grant No. 15JOVW-22-GK-00334-DISA awarded by the Office on Violence Against Women, U.S. Department of Justice. The opinions, findings, conclusions, and recommendations expressed in this publication/exhibition are those of the author(s) and do not necessarily reflect the views of the Department of Justice, Office on Violence Against Women.
Youth Self-Advocacy
In 2023, DRM launched a new Youth Self-Advocacy Program (YSAP), which began robust programming in 2024. Shortly after programming began, young folks reported that they wanted to talk and learn about advocacy in their interpersonal relationships, be it with parents or other family members, friends, romantic partners, online connections, and beyond. In July 2024, Program Director Kate Turpen saw an opportunity to achieve two goals with one initiative when they were trained in Mad Hatter Wellness’ Empowered Together curriculum. With this training, Kate could both respond to program participants request for information and provide high-quality, comprehensive sexual health instruction to fill a systemic gap in the current educational landscape. A sobering truth is that students in special education are not included in the health lessons their peers in general education receive. There is overwhelming stigma that people with disabilities are uninterested or incapable of having passionate relationships with others, dating, or planning for a future family – the YSAP team found this couldn’t be further from the truth.
In the fall, in partnership with trainers from Speaking Up For Us, Kate trained six self-advocates and one professional in the Empowered Together Curriculum. This train-the-trainer model was critical to increasing the YSAP’s capacity to offer lessons in more locations. The Empowered Together curriculum is unique as it requires lessons be co-taught by a professional and an adult with a disability. Lesson topics include having crushes, dealing with rejection, a brief exploration of gender identity and sexual orientation, dating, reproductive body parts and pregnancy, consent, self-esteem, and body image. The training culminated in a 2-day facilitator training with the Executive Director of Mad Hatter Wellness, Katie Thune.
Upon completion of this training, the YSAP team partnered with Deering High School to implement lessons. The pre-survey given to students showed that approximately 16% disagreed that they were in charge of their bodies and nearly 20% did not think that both people needed to consent before sexual activity. After spending 10 weeks with the students, post-survey results showed that 100% of students reported they were in charge of their own bodies and knew everyone needed to consent. The pilot program was a clear success and DRM will be offering the programming at more locations in 2025.
“You taught me to understand and appreciate myself.”
– YSAP Participant
Community Engagement
Collaborative Outreach
In response to the housing crisis, DRM engaged in outreach and advocacy for individuals with serious mental health disabilities affected by the dismantling of a tent encampment in a local city. Following the city’s actions to clear the encampment—issuing no-trespass orders and removing tents and belongings—a private organization rapidly established a shelter for those displaced. DRM staff partnered with the new program to conduct an outreach visit, connecting directly with affected individuals and equipping them with the knowledge and resources needed to navigate the challenges of displacement and secure necessary services.
DRM staff also collaborated to conduct outreach in rural areas of Maine, including the St. John’s Valley and Downeast Maine, which are historically underserved. Through this effort, DRM reached more than 300 disabled community members and provided self-advocacy tools and information about employment resources.
Deaf Services Employment Conference
Over 80 people attended DRM’s Deaf & Hard of Hearing Conference on June 7, 2024. The keynote address was given by Dr. Amie Fornah- Sankoh, who in 2023 made history as the first Deaf Black woman to earn a STEM doctorate.
She shared an empowering message of self- reliance, perseverance, and the importance of communication access and exposure. Dr. Sankoh also moderated a panel discussion of Deaf & Hard of Hearing individuals discussing their experiences in the workplace. The afternoon saw workshops on employment rights, apprenticeship programs in Maine, assistive technology in the workplace, and work impacts on benefits.
Election Access
An important part of DRM’s work is ensuring that disabled people can vote privately and independently and are fully included in the electoral process. In 2024, DRM engaged in significant efforts to increase the disability vote in advance of the 2024 General Election.
Highlights included:
- Developing Maine’s RevUp Coalition.
- Training more than 590 people with disabilities on the voting process and the importance of civic engagement.
- Training over 600 election officials in Maine on compliance with the Americans with Disabilities Act and the Help America Vote Act.
- Monitoring more than 210 polling places in all 16 Maine counties, collecting over 8,000 data points.
Advocacy in Action
Mary Maintains Access to In-Home Supports to Avoid Institutionalization
DRM represented Mary, a woman with ALS who needed more home support hours than MaineCare policy allowed. DRM filed a request for an exception with DHHS, so that Mary could receive the support she needed in excess of the existing monetary cap. DRM argued that without the exception, Mary would be institutionalized which would violate the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Supreme Court’s decision in Olmstead. DHHS agreed to the request and allowed the client to receive more hours.
As the client’s condition progressed, DRM made subsequent requests for more hours, and each time, the request was granted. Mary eventually passed away, but was able to live out her remaining days in her home with her family by her side and in accordance with her wishes.
DRM Helps Lorraine Avoid Loss of Dog
Lorraine was involuntarily hospitalized at a psychiatric facility and faced losing her dog of over eight years, which had been taken by police and brought to a local shelter during the events leading to her commitment. Being involuntarily committed for 30 days, she was unable to address the shelter’s warning that state law allowed them to rehome or euthanize the dog within 10 days unless arrangements were made by her to pick up the dog within that time. Lorraine’s bond with her dog was crucial to her mental health, and its loss would likely jeopardize her ability to transition successfully back home, prolonging her hospitalization. DRM intervened, negotiating an extension with the shelter and helping the client secure resources to transport the dog to an external kennel during the time of the client’s commitment. This allowed Lorraine to focus on her recovery and after her discharge, she was successfully reunited with her beloved dog.
Making Preschool Accessible to All
Beginning at age 3, children with an Individualized Education Program (IEP) have a right to a free appropriate public education. Over the last few years, DRM received dozens of calls from families whose preschool-age children were not receiving the education and services they were entitled to. Oliver was one of those children. Oliver, who is blind, loves to play with his toys, explore the outdoors with his mom, and listen to stories.
As soon as he turned 3, he was ready to go to preschool and make new friends. Instead, he received no education or services for 16 months. Oliver’s mom contacted DRM and as a result, he received compensatory education services and is now enrolled in his local kindergarten. Oliver’s story, which parallels the situation for many young children across Maine, is why DRM continues to advocate for systemic improvements to improve access to quality early childhood education.
By the Numbers
DRM provided direct representation to 1198 clients in 1430 cases. DRM’s equipment distribution programs served an additional 185 clients, while information and referral services were provided to 1705 individuals.
Financial Summary
Year Ending September 30, 2024
Revenue and support
- Federal grants: $2,022,606
- State grants: $1,876,964
- Fee for Service: $333,175
- Contributions: $36,443
- Other Revenues: $90,909
- Other Grants: $205,459
TOTAL REVENUE: $4,565,556
Expenses
- PADD: $389,403
- PAIMI: $407,890
- PAIR: $165,661
- PAAT: $44,560
- PABSS: $135,548
- PABRP: $102,400
- PATBI: $34,080
- PAVA: $161,398
- Client Assistance Program: $97,415
- Educational Advocacy: $130,279
- Psychiatric Center Advocacy: $398,580
- Maine Civil Legal Services: $70,363
- Acadia: $22,605
- Developmental Services Advocacy: $605,581
- Deaf Advocacy +
Communication Access Program: $549,794 - OVW Disability Grant: $132,445
- Innovation Program: $284,998
- Health Access: $85,905
- Voting Access: $6,747
- Supporting Services: $744,510
Total expenses: $4,570,162
How Can We Help?
Contact us anytime. DRM wants to hear from you. Whether you’re looking for advocacy, have a question, or just want to connect, please reach out.