Winter in Maine can be a long few months, especially when it comes to getting sick. Colds, flus, and respiratory illnesses are all more common, and people are indoors more often, making it easier for sickness to spread. With COVID-19, flu, and RSV all increasing in recent months, it’s more important than ever to stay up to date on vaccines. Vaccines help us not only to protect ourselves, but also to protect our family and friends. Let’s get through this winter COVID-19 and flu free!
Currently, everyone six months or older should get at least one updated COVID-19 vaccine. People who are immunocompromised can get an additional COVID-19 vaccine. (Not sure if you are immunocompromised? Now is a good time to reach out to your healthcare provider and ask.) And since COVID-19 and flu shots can be given at the same time, you might consider getting both in one appointment to save time, travel, and hassle.
But, what if getting a vaccine isn’t so easy? DRM knows that people with disabilities experience many barriers when trying to access healthcare, including getting vaccines. In fact, a recent study found that people with disabilities are more likely to want a COVID-19 vaccine, but less likely to actually get one due to barriers like inaccessible offices, trouble scheduling appointments, or a lack of transportation.
There are resources that can help. For example, if you have unreliable transportation or trouble moving or walking, planning a trip to the pharmacy or the doctor’s office can be difficult. It might be easier to get a vaccine in the comfort and safety of your own home instead. In Maine, this option exists. There are programs that provide in-home COVID-19 and flu vaccines for people who have trouble leaving home. One is the Age Wise Maine At Home Vaccination program. For other people, it may simply be a struggle to find a vaccine appointment somewhere close by. Many pharmacies do now offer vaccine appointments across Maine; however, many require online appointment sign ups which can be tough to navigate – especially for those who do not have internet or computer access.
Good news – DRM is here to assist. DRM’s Health Communicator, Lane Simsarian, is available to ensure that people with disabilities have access to vaccines, treatments, or testing. DRM can assist by:
Helping to find or register for vaccine appointments near you;
Arranging for in-home vaccines for people who have difficulty leaving their home;
Requesting accommodations for vaccine appointments (for example, ASL interpreters, captioning, clear masks, or large print forms);
Finding free vaccinations if you do not have insurance;
Answering general questions and sharing resources for vaccines, treatments, and testing.
Anyone with questions or requests for assistance can contact Lane at lsimsarian@drme.org or (207) 626-2774 x263.
Vaccines still offer the best protection against getting seriously ill from COVID-19 or flu. For those who do get sick, unvaccinated people are far more likely to end up in the hospital. People who are over 60, or who have health issues, are particularly at risk.
Maine people did so once again in record numbers this midterm election (a general election that takes place in a non-Presidential election year). Maine voters with disabilities were no exception, and Disability Rights Maine worked hard across the state to increase, encourage, and support the growing power of the disability community’s voice and vote.
Much has changed since I was first a full-time advocate with DRM (then known as Maine Advocacy Services) in 1989 – both at the agency and in voting rights and access for Mainers with disabilities. For one thing, our current Executive Director was then an advocate for the CAP program, then an advocate in the PAIMI program, then PAIMI Program Director, before becoming the Executive Director. The agency employed approximately 15 staff people. Mainers under guardianship did not have the right to vote. Federal Protection and Advocacy Agencies did not have PAVA (Protection and Advocacy for Voting Access) funding, and thus no voting advocates or programs. Technology and assistive technology were in their infancy. Perhaps most critically, the Americans with Disabilities Act, was on the verge of passage, but had not yet been enacted.
Fast forward to 2022. I am once again a full-time staff member of Disability Rights Maine, now at the other end of a career in various settings centered on amplifying the voices, rights, and self-determination of people with disabilities. It is such a privilege to be back and to be a part of a team that now numbers more than 50. Our staff come from varying backgrounds, education, employment and life experiences, but all share the same dedication to advancing justice and equality for people with disabilities. And what a great team this staff is!
My first day back working for DRM came just eight weeks before the election – crunch time for all things voting. Given that DRM staff all have multiple specific responsibilities in their own positions and programs apart from voting access work, I was surprised, amazed, and relieved by not only the welcome from existing staff, but the voting knowledge they shared with me. Most of all, I was inspired by the collective action our staff took to ensure people with disabilities were registered to vote, trained on their rights, and educated about the entire process of exercising their right to vote.
In those short weeks, DRM staff:
Organized, advertised, and staffed 14 voter registration and education events across the state. Special thanks to Mary Green, who collaborated with a provider agency in Aroostook County to reach more than 100 people, and to DRM’s Deaf Services staff, Tommy Minch and Michelle Ames, who presented on voter rights and accessible voting options in ASL to over 25 Deaf Mainers.
Presented to numerous statewide groups to talk about voting rights and voting access.
Participated in the Youth Summit hosted by Democracy Maine.
Talked about voting wherever we could – including at psychiatric hospitals, Clubhouses, and anywhere DRM staff happened to find themselves.
We also collaborated with the League of Women Voters, Democracy Maine, Rock the Vote, The National Disability Rights Network (NDRN), and the REV UP initiative. And, we worked closely with Maine’s Secretary of State to train more than 100 election clerks on the rights of voters with disabilities in Maine. A special thank you to DRM’s Public Policy Director, Sara Squires, who organized and conducted these training events.
Wow, we were busy!
Election day, November 8, 2022, brought me back to the excitement of my childhood. I was raised by two parents very active in Maine politics and public service, so I’ve been involved in every aspect of civic engagement since I was 6 years old. I’ve knocked on doors, called to arrange rides to the polls, held signs at rotaries and bridges, accompanied adults getting absentee ballot applications out to voters in the days before our electronic options, and dropped election literature at doors throughout Kennebec County. It’s shaped who I am.
With those experiences in my memory bank, returning to DRM for the 2022 Election Day was awesome. DRM staff were present at polling locations across Maine all day long, where we observed and monitored access to in-person voting for voters with disabilities. We noted everything from the availability, privacy, and working order of the Accessible Voting System, to whether the polling place had enough designated parking and van accessible parking for people with disabilities, to obstructions into the polling location, and other ADA required compliance for voting access. We also operated a voting rights hotline. Our PAIMI program advocates and attorneys worked to resolve a number of obstacles for individuals in hospitals and state institutions who were trying to utilize Maine’s Special Circumstances Absentee Ballot option. We worked closely on Election Day with Maine’s Deputy Secretary of State, Julie Flynn, whenever our staff encountered a concern. We are grateful to have an extremely responsive Secretary of State’s office, who is dedicated to ensuring that all eligible voters who want to exercise their right to vote are able to do so.
Much has changed since I first began my career at Disability Rights Maine. Not only do we have more staff, but access to voting has changed. We have more ways to vote, people under guardianship can now vote in Maine, and there are new laws that expanded access to voting for people with disabilities – thanks to both the ADA and the Help America Vote Act (HAVA). Much more remains to be done to increase voter access, registration, and turnout among voters with disabilities. There is a need to increase the information, education, and opportunity to access the voting process for people with disabilities. This is particularly true for those of us whose choices and autonomy have often been disregarded in various aspects of our lives.
The next general election is in 2024, but our preparation starts now!
DRM’s Deputy Director Katrina Ringrose, with newly registered voter, Mary, in Brunswick.
Adults make decisions for kids all the time. What time they wake up, what they eat for breakfast, how much TV they can watch, if they can hang out with their friend after school. Almost every aspect of a child’s life is predetermined by the adults providing care for them, whether it’s their parents, teachers, or others. And for children with mental health and developmental disabilities, adults make decisions for them regarding their treatment, usually without any input from the child.
Adults gather in a child’s treatment team meeting to determine the next steps for treatment (i.e residential treatment, discharge, etc), to make changes to medication, and to discuss the progress or lack thereof in treatment. All without asking the child their opinion or thoughts on what should come next or what they think might improve their treatment.
This isn’t because kids don’t have an opinion. As a youth advocate, I speak with plenty of young people who have strong opinions, thoughts, and feelings regarding their treatment. I hear from youth across the state about their opinions on institutionalization, medication, whether their treatment is working, and what they want to see as their next step in treatment. And when I ask these young people if they have been included in their treatment team meetings or if they know what’s in their treatment plan I’m often met with shrugs of indifference. Not because the youth aren’t interested in being included, but because they assume that it isn’t possible. The status quo is that adults make decisions for them and not with them.
Youth involvement in treatment is a right outlined in the Rights of Recipients of Mental Health Services who are Children in Need of Treatment (RRMHS). RRMHS outlines that youth age 14 and older have the right to be fully and actively involved in the development or revision of their treatment plan. RRMHS adds that involvement of younger recipients is on a case by case basis. RRMHS is the floor, not the ceiling. It paves the way for youth inclusion in treatment, but we don’t have to stop at what it outlines, there are numerous ways to involve youth in their treatment and to value their input.
By creating opportunities for a child to voice their opinions on their own life, we are restoring agency and autonomy by providing a positive avenue for a youth to exercise their power and control. And when we listen to a young person, we are proving to them that their voice matters and can have an impact.
Opportunities for youth to have input can be inclusion in team meetings, goal setting, providing their own informed consent for treatment and medication, and a space and time to voice their concerns and questions.
By valuing and uplifting youth voice in treatment, we lay the foundation for self-advocacy, decision making, problem solving, and goal setting, all skills that will further serve them to achieve the best possible treatment outcomes. As adults in children’s lives, we have a responsibility to provide them with opportunities to provide input and feedback and to allow them a choice. And we have a responsibility to really listen to them and prioritize their wants and needs.
DRM actively engages with youth across the state in different settings to teach youth about their rights in treatment, how to self-advocate, how to ask for help, and most importantly, to listen to them. But DRM can’t do this alone. It’s important that providers, parents and caregivers, education staff, and other support networks encourage youth voice by providing opportunities of input and inclusion, and to listen to their feedback. With greater youth inclusion in treatment, we will see better treatment outcomes and youth equipped with lifelong skills to serve them going forward.
Centering Youth Voice In Treatment is a training available in collaboration between Disability Rights Maine and Youth Peer Support Statewide Network (YPSSN) for providers and other support services. This training provides a deeper dive into why youth involvement in treatment is so important and strategies to prioritize it in your work. If you are interested in receiving this training, please reach out to Ariel Linet (ariel.linet@mainehealth.org) at YPSSN or Anna Schmidt (aschmidt@drme.org) at DRM.
I learned how to drive in high school after I turned 15 and passed the test to get my learners permit in Vermont. I remember my dad taking me to the local middle school parking lot, where we would practice learning how to feel the clutch catch into gear. Learning to drive gave me the freedom of independence and felt like a stepping stone into adulthood.
My license was revoked in 2016 after I had my skiing accident that left me using a wheelchair for mobility. Driving was something I always took for granted. I never considered that someday I might not be able to drive. But, it took nine months for me to get my license back after my accident. To do so, I went through driving rehabilitation to understand how to operate hand controls. Using hand controls is no different than driving with feet when you can’t operate your legs so it came to me pretty naturally. The independence that I got from driving was freeing and it was the first time since my accident where I felt free and independent.
Access to driving for people with disabilities can be a different scenario than what I experienced. Some people will never have the opportunity to drive with their disability. For others, having access to a wheelchair accessible vehicle may be necessary. But, these vehicles are always more expensive than normal cars. Vocational Rehabilitation (VR) will sometimes pay for the modifications to a vehicle, but that may not be the case for a lot of people who need access to transportation.
June was National Ride Transit Month so, as a daily driver, I decided to give riding public transportation a try. Before the pandemic, working from home was not as common as it is today. I would have needed to figure out my transportation to work if my car was in the shop for an extended period of time. Thankfully remote work has changed the requirements for in-office work for some groups of people, but there are still many workers that need to show up in person for their jobs. Many people, both with and without disabilities rely on public transit to get to work. So, in June, I asked myself, what if that was me?
Paratransit is available for people with disabilities to have access to public transportation if you live within ¾ of a mile from a fixed public route. Paratransit is a public transportation option for people with disabilities that offers to pick you up at your home, if you are unable to get to the public bus stop due to your disability. Since I live in a rural area, I do not fit that criteria. This is a common issue for Mainers since there are so few fixed routes in the state, which limits the paratransit options for those who could be using these services.
To start my public transit commute, I had to first drive to Portland. That is 10 miles from my house. During my route I had to wheel up a hill that was pretty difficult for me to push up in my chair. I was surprised to see a couple of barriers on my way to the bus stop. These barriers may not affect me, but could be barriers for others.
Sidewalk ends with truncated dome that ends with a curb. This is not an issue for me to wheel over but could be a serious barrier for visually impaired individuals.
I took public transportation during the Maine Mobility Summit to get a better idea of what it would be like for me to commute to work. First, I could not commute by public transit from my home to my office, and I live in a more urban area than most of the rest of Maine. I also faced other barriers during my commute. Older sidewalks can be deteriorated and off camber, requiring you to compensate where you push to keep yourself going straight. This is something I experienced multiple times. I also had to get on the bus on a hill, which was difficult to get on independently. I needed a push from the bus driver to get onto the bus. If the bus stop was truly accessible, I wouldn’t have to ask for assistance getting in the bus.
Metro bus stop with a sign that has a handicap image. All metro stops have signs that indicate handicap accessibility. All metro buses have a ramp that users can wheel up if needed.
Would I use public transportation again? I would be much more willing to use public transportation if I was within ¾ of a mile of a fixed route since I would qualify for paratransit, especially if I was running into vehicle troubles. Most, if not all, buses are accessible for people using wheelchairs and often involve you needing to be tied down with straps to make sure your chair stays still while the bus is moving. I feel safe enough in my wheelchair to be tied down and found that the bus service did a good job making sure I was secured safely. Due to this, I would have no problem using public transportation if it was in my area.
But, as my experience shows, the limited routes of both buses and paratransit, particularly in rural Maine make it impossible for me to rely on public transit. I am not alone in this case, as so many people in Maine are located in rural areas and outside of the paratransit range. Expanding transportation routes and ensuring accessibility along routes is paramount to increasing full access and inclusion of people with disabilities.
Over-the-Counter (OTC) hearing aids are in the news. It is estimated that 217 million Americans live with some degree of hearing loss. And yet, hearing aids remain vastly underutilized: only about 20% of people who could benefit use one.[1] For many, the high cost is a deterrent. The average cost for a pair of hearing aids can easily surpass $4000, and typical devices must be replaced every 5-10 years. Coverage of hearing aids by private insurers is spotty, while Medicare does not offer coverage of hearing aids at all. Others face difficulty accessing an audiologist or obtaining a prescription for a hearing aid. Regardless of the barriers, the bottom line is clear – many go without.
On October 19, 2021, the U.S. Food and Drug Administration announced a proposal intended to expand access to and reduce the cost of hearing aids. The proposal includes the establishment of a new category of Over-the-Counter (OTC) hearing aids. OTC hearing aids are devices intended to help people with mild-to-moderate hearing loss. Like traditional hearing aids, OTCs can make sounds louder, allowing individuals with difficulty hearing to better listen, communicate, and participate in daily living. As opposed to FDA-regulated hearing aids, OTC devices can be purchased directly by consumers, without visiting a hearing health professional. The rules would establish guidelines for device effectiveness, safety, and labeling, as well as where and how over-the-counter hearing aids could be sold.
Access to a less expensive option of hearing technology could positively affect individuals who would not otherwise seek assistance. “This allows us to put hearing devices more in reach of communities that have often been left out. Communities of color and the underserved typically and traditionally lacked access to hearing aids,” Xavier Becerra, secretary of the U.S. Department of Health and Human Services, said at a recent news briefing on the subject. https://www.webmd.com/a-to-z-guides/news/20211019/fda-over-the-counter-hearing-aids
However, consumers and professionals point out the need for caution. Audiologists note that not all hearing loss is the same, and not all individuals with ‘mild or moderate’ hearing loss will necessarily be good candidates for OTC devices. Concerns remain about clear labeling, device effectiveness, and marketing; decibel level control on OTCs; and the risk that without professional screening, individuals who are not candidates for OTC devices will rely on them all the same due to their cheaper cost.
The FDA is working to finalize the rules and the adoption of the final text is yet to be determined. This regulation would take effect 60 days after the publication of the final rule. https://www.nidcd.nih.gov/health/over-counter-hearing-aids
Disability Rights Maine’s Deaf Services program offers advocacy, equipment, training and education for individuals who are Deaf, Hard of Hearing, Deaf-Blind or Late Deafened.
[1] According to a survey conducted by the Hearing Loss Association of America (HLAA) only one in five people who could benefit from a hearing aid uses one.
