In This Issue:



• Welcome
• SUFU Office Hours
• A Look Back 2024
• Jon's Corner
• Year In Review from Stacy
• Year In Review from Cherie
• Statewide Meetings
• Coming Soon!

Welcome

Welcome to the final 2024 Newsletter from Speaking Up For Us. What a year!

From attending the Disability Policy Seminar in Washington DC, to the eclipse in Houlton, Disability Pride Day in Augusta, our conference in Bangor and SUFU staff were busy crisscrossing the state and part of the country.

SUFU was able to host picnics in parks around the state to meet with self-advocates. This was an opportunity to meet so many new people. Self-Advocates encouraged each other along the way to use their voices. We look forward to new opportunities in 2025.

A Look Back 2024

Hello Self-Advocates and Supporters,

December is always a great time of year to look back and reflect on all the hard work we have done at Speaking Up For Us to build leadership skills and advocate for our members to live better lives. 

This year our Board of Directors focused on being active on specific issues such as Social Security Reform and eliminating the marriage penalty. We sent a group of folks to Washington DC to discuss this issue with our congressional delegates. We also strongly advocated to make these changes here in Maine within our own legislature and though the bill to establish marriage equality in Maine did not get funded we are looking forward to resubmitting legislation this year. 

We have worked on improving transportation and promoting employment opportunities for people with disabilities. We learned from many of our members about their new jobs or education opportunities. We participated in groups working on improving health care and involvement of people with disabilities in research. We also worked on voting and making the voting questions more accessible for all people. These are areas we plan to continue working on into 2025. 

We trained over 20 new self-advocates to be leaders in their own lives and expanded our Board of Directors to 21 members representing the voices of self-advocates across Maine. We are looking forward to building leadership skills in a new group of self-advocates in spring 2025. 

Overall, with all the ups and downs 2024 has been a good year. All of the staff at Speaking Up For Us deserve a break, and we will be closed December 20-January 6. We look forward to seeing you in the new year! 

Seasons Greetings,

Monique Stairs, Executive Director

Jon's Corner

Hi, this is Jon McGovern. This has been a busy year.  

This year SUFU staff and self-advocates attended the Disability Policy Seminar in Washington DC. We were able to have Hill Visits to speak with either the Representative, Senator or someone from their office. We spoke about the Marriage Penalty and Raising Asset Limits and the importance of that. At the Federal Level they call it the SSI reform bill.  

We spent time preparing our presentation and practicing before we went down. We wanted to make sure that we didn’t get nervous and so we would know what we were going to say. One of the ways we practiced this was when we went to the SARTAC meeting and gave our presentation to share with other states. 

In addition, this year I was able to be part of Project Connect, NEAT, RevUp, PCP Train the Trainer, Empowered Together and write blog posts.  Each of these things is very important. 

Our purpose at Project Connect was to include people with I/DD in medical research and studies. We met regularly to discuss topics such as the History of Research types, and Patient Centered-Outcomes Research. We also talked about asking questions, answering questions and gaining accurate information to include the lived experience of people with disabilities. I was also part of the expert panel to create understandable language for each topic. 

I was able to join RevUp, which is a coalition about voting. We would talk about what voting is and about the use of the accessible voting machine. There is also a discussion about creating rules that make ballot measures more understandable for all voters.

NEAT stands for North East Advocates Together. NEAT is made up of representatives from the following states: Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut, and New York, and the representatives from SABE. We meet quarterly to discuss what is happening in each state and hear a report from SABE. We share resources and information in this group. 

I was able to participate in the first PCP Train the Trainer class. I thought this was good information for people with disabilities. It helps us to understand what goes on in our PCP meeting and to advocate for ourselves in this meeting. We got to do some practice and demonstrations. I’m looking forward to presenting this at an area agency. 

In addition, in the spring I was able to take the Empowered Together class from Mad Hatter. This class was about relationships, boundaries and more. Taking this class was a refresher course for me and it was good to refresh my mind.  

This summer I was able to attend Disability Pride Day in Augusta. It’s nice to meet the people from DRM and talk with all the vendors that were there.  I was able to help fellow self-advocate Todd out, as he went to Disability Pride Day for the first time. I showed him how to use the accessible voting machine. I was able to mingle with people there and introduced myself to people I had not met before. 

This year I have been able to write for our SUFU blog. I think it is fun to write for the blog, and I would like to see other self-advocates write a blog.  I would like to help others write a blog post.

This fall we had our Annual SUFU Conference. We held it in Bangor. I got to see people I had not met before. I also was able to see people I had not seen in many years. Self-Advocates were able to vote for who they wanted on the board of directors. The workshops went well. We had a great awards ceremony and dance. Everyone seemed to like the raffle items. I am looking forward to next year’s conference!

In October I went to the DRM dinner. This was a great opportunity to support Self-Advocate Eric McVay. I was able to mingle and talk with people from DRM and other organizations.  

November brought us to the APSE Conference in Bangor. I was able to attend with Stacy, Ruth and Monique. My favorite part was hearing Robbie Garland talk about his job. It was nice to see people with disabilities be part of their panel. 

Lastly, SUFU has had their pre-legislative Statewide Meeting to talk about what the priorities are for self-advocates for the future. We look forward to our Legislative Statewide Meetings which begin on January 14^th, and we hope you will join us. Those meetings are on zoom at 1:00 pm.  

2024 Year In Review from Stacy

2024 has been amazing at Speaking Up for Us (SUFU) and we have come a long way since the year began. Self-advocates have worked hard to encourage legislators to reform SS benefits and erase the Marriage Penalty including a journey to Washington DC to meet with Maine representatives and senators. There were exciting fundraising events like the Whoopie Pie Eclipse Extravaganza in Houlton and a community canoeing event in Medway.

According to many who attended in September, the 2024 SUFU Conference was the best SUFU conference ever! Self-advocates had the opportunity to collaborate, learn, relax, craft, and have meaningful discussions about issues facing people with DD/IDD. It was a perfect time to recognize self-advocates for their hard work and spotlight some of their accomplishments. Don’t forget the dancing, we jammed to some great tunes provided by Krunkwitch and captured some very nice photos of folks. They were perfect for sharing on our website.

This year some individuals connected with groups such as REV UP to help increase voting access. There are ongoing discussions about Maine’s ballot measures and how difficult they are for folks to understand. Does Yes mean No or Does No mean Yes? This is a common complaint that folks talk about, especially when it is time to vote. In the coming year, there will be a plan of action that will include language that is easier to understand.  A lot of folks worked with PCORI to learn about various types of research and concluded that including people with DD/IDD in research will ensure better health outcomes. 

Some self-advocates have become employed or self-employed and thrive in enjoyable and self-fulfilling positions. There is still much work to do with employment and the challenges of finding supportive work and transportation continue. I look forward to progress in the new year.

We will have more opportunities to meet in person this year while still having some regular chapter meetings on Zoom. This year we strive to meet once or more each month rather than once per season. Changes will allow more self-advocates to meet with an advisor face-to-face.  While some self-advocates have many barriers to attending regularly scheduled chapter and state-wide meetings, advisors will be available to meet with folks individually, if they choose.

I look forward to having many discussions about employment, transportation, information sharing, workforce shortages, HCBS, voting access, and increased access to focused research on health issues facing people with DD/IDD.

I have been extremely blessed to have folks invite me to day programming, home planning, employment support planning, person-centered planning, networking, and learning opportunities. I look forward to connecting with familiar faces and meeting new ones as we enter the new year. I look forward to connecting folks to new opportunities in employment, supporting their voice in lawmaking, encouraging independent decision-making, and much more.  Happy New Year!

Best Regards,

Stacy G

2024 Year In Review from Cherie

While my “year” in review is not quite a full year, it has been an exciting one.

Becoming the advisor of the Western Foothills Chapter has been such a rewarding experience. I have gotten to see it grow these last few months. One of my favorite things we did was having a picnic in Mexico. It was so much fun. I loved being able to spend time with everyone in person. Seeing all the smiling faces really is one of the best parts of my job.

I got to attend my first Disability Pride Day in Augusta. What a great experience. And one I highly recommend. There was a great turnout. There were programs, information, food and entertainment there all day. I enjoyed meeting everyone and seeing all the other programs that were represented there. We had beautiful weather, which made the day even better!

Our annual SUFU Conference was a big hit! I had the pleasure of doing a lot of the organizing for that event. It made me so happy to see everyone having a good time and interacting with each other. I think we may have sold out the whole first floor of the hotel! From the workshops to the food, awards and dancing, I think a whole lot of fun was had by all. I would like to take a minute to thank all the staff that came and made it possible for their individuals to come. We appreciate you beyond words. Seeing you interact and have fun was really a highlight for me. So, thank you for being you!

I am looking forward to what 2025 brings. Meeting new friends and seeing old ones.

Thank you for welcoming me to the SUFU staff and for inviting me in to be a part of your lives.

I am so happy to be here.

~Cherie

Statewide Meetings Return!

SUFU Statewide meetings have returned! We look forward to seeing you on Tuesday's at 1:00 pm. Our schedule is below

• January 7th - Lifespan
• January 14th - Legislative Statewide
• January 21st - Adult Life Stages
• January 28th - Legislative Statewide

All Statewide Meetings are at https://us02web.zoom.us/j/911978966

Coming Soon: Current Events Meeting!

SUFU is excited to announce a monthly Current Events Meeting the 2nd Wednesday of the month starting January 8th at 10:00 am. We will meet on Zoom to discuss current events that are important to self-advocates. Questions? Contact Laurie Coldwell at 207-956-1004