active community member

Tag: active community member

08
Apr
2015

Keep Calm and Vote On

I was texting with my friend, who happens to have autism. I asked her about the upcoming election for president. I asked, “Who are you going to vote for?” She answered, “I already sent in my absentee ballot. The last time I went to vote, it was sensory hell.” She had a tough time at the polling place in her town. She went on to tell me that the workers acted like she was stupid. She had trouble with the bright lights, noises and long lines. She wasn’t sure what line to get in. She got nervous. When she gets nervous, she talks loud and doesn’t even know it. Her story made me wonder if there was an easier way to vote if you have autism.

What is the law for polling place access for people with disabilities?

In 2002, the Feds signed the Help America Vote Act (HAVA)[1] . Many voting places were tough to figure out if you had a disability. Two mandates were decided on:

1. Accessibility costs money. So a grant program was created to give money to towns and cities so they could upgrade their polling places.

2. Every polling place in the United States was to have at least one voting machine that was private.

Pretty simple. But not so easy in reality. How could someone with autism have a shot at voting in person? A simple checklist could help. And make sure you are registered to vote! You can’t show up the day of the election. You must register ahead of time. Call your city or town hall for instructions.

Simple steps to make voting in person easier

1. Plan your visit. Call your town hall or city hall. Ask if you can stop by the night before the election. The voting booths should be set up. Find out the best time to vote. Ask what time of day has the shortest lines.

2. Ask about the private voting booth. Where is it located? Does your polling place even have one? If not, find a booth at the end of an aisle so you have some privacy.

3. Pack a “sensory” kit – bring a koosh toy, gum, or stress ball. Wear ear plugs. Use whatever will work to reduce your stress. If you get stuck in a long line, you’ll be glad you have something else to focus on.4. Get the name of the person who can help you on voting day. Can this person check you in?

5. Bring a picture ID! You may have to prove who you are.

6. Get a sample ballot ahead of time, if you can. Know who you are voting for before you show up. Know what issues are on the ballot.

7. Know what to do after you vote. Ask about where you turn in your ballot and where you check out.

8. Bring a friend or family member. He or she can help you if you get confused or feel like you are going to have a panic attack.

Keep calm and vote on!

[1] H. R. 3295—33 PART 2—PAYMENTS TO STATES AND UNITS OF LOCAL GOVERNMENT TO ASSURE ACCESS FOR INDIVIDUALS WITH DISABILITIES

21
Mar
2014

Visions of Community | Saturday, March 8, 2014 – Seaport World Trade Center – Boston

categories: Community

guest speakers Michael K. Yudin. Dana Yarbrough, and Brooke Yarbrough, at the visions of community conference 2014 — Visions of Community 2014

The Federation for Children with Special Needs held its annual statewide conference “Visions of Community, a Conference for Parents of Children with Special Needs and the Professionals Who Serve Them” on Saturday, March 8 at the Seaport World Trade Center in Boston. It was a wonderful day! Energy and inspiration, and hope and expectation were felt throughout the day by the 900 people who attended the event.

Two keynote presentations for Visions of Community were Michael K. Yudin, Acting Assistant Secretary for Special Education and Rehabilitative Services for the US Department of Education and Dana and Brooke Yarbrough. Dana is the Executive Director of Parent to Parent of Virginia. Her daughter Brooke operates Brooke’s Happy Tails Dog Boarding, a microenterprise she started in 2012. Michael Yudin’s message centered around three key principles: inclusion, equity and opportunity. His message was down to earth and resonated with parents and professionals. Yudin believes that we are to change the culture of expectations and truly believes that “parents are the change agents.” Dana Yarbrough and her daughter Dana spoke about transition to adulthood and again the issue of expectation was brought forth. Dana expressed that in her experience as a parent she values having progressed from advocating for her daughter to learning to advocate with her daughter.

Breakout workshops at Visions of Community included topics on special education advocacy, managing challenging behaviors, transition to adulthood for students with disabilities, inclusion, policy initiatives, assistive technology, healthcare, bullying, parent leadership opportunities, early childhood, autism and more. In addition to approximately 30 sessions in English, a full conference strand of many of these topics was offered in Spanish, Portuguese, Chinese, Somali, and Vietnamese and also ASL interpretation. The conference Exhibit Hall featured about 84 vendors and resources for families.

The conference offered a wonderful opportunity for families and professionals to network and learn about important resources. Just to illustrate this point, a staff member related his experience in passing two parents in the hallway outside of the Waterfront Ballroom as they were leaving the session on the Emotional Journey of discovering your child has special needs. They were exchanging the types of benefits they had so far been able to acquire for their children of similar ages. What impressed the staff member was that even in the most remote crevices of the World Trade Center, parents were helping parents find the support they desperately needed, and the Federation conference is a major contributor to facilitating and initiating those interactions and relationships. That reflection exemplifies the mission of the Federation, which is the commitment to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities. The Federation places a tremendous value on parents because of the contributions they make as the leaders of families toward supporting the health, education, and development of their children at home and in society.

It was a day filled with information, hope, inspiration, support and the opportunity to establish links and relationships for parents and professionals. We only have to wait until March 7, 2015 for the next year’s conference to feel that energizing wave again. In the meantime, if you want to learn more about the Federation and its projects, please visit www.fcsn.org.

To see past keynotes speakers and award recipients go to fcsn videos

19
Dec
2012

“Living my Childhood Dream”, by Tracy Thresher

categories: Advocacy

Tracy Thresher lives and works in Vermont as an advocate for people with disabilities. He has written:

“As a child, I struggled with no reliable way to communicate. I now live out my dream of traveling to other states to educate others on movement and communication differences. Primarily, I advocate to promote the Presumption of Competence. “ (Blog Post, October 30, 2012)

This week we are pleased to share the transcript of an interview with Tracy that was recently published in Autism Around the Globe .

I am Tracy Thresher from Barre, Vermont. I now live part of my childhood dream thanks to the support of facilitated communication. Master trainer, Harvey Lavoy, has been my primo facilitator since the early 90s. Harvey, master trainer Pascal Cheng and my pal, Larry Bissonnette, and I have presented to educate others for many moons. Since the release of “Wretches & Jabberers”, Gerry Wurzburg’s documentary about our lives and work, our travel calendar has been wonderfully and fantastically full of opportunities to promote the presumption of competence. Please read
my blog to follow along on my journey.

Below is a transcript from my interview with the NLM Family Foundation featured in a video montage created by the Foundation titled, “In Their Own Words: Living with Autism in Adulthood.” I have had mind blowing professional growth thanks to communication. Communication opens the door to opportunity.

What are your hopes and aspirations for creating the adult life you desire?

My hopes are like a beautiful tapestry which I need to find the perfect combination of support to make into my own magic carpet. My wish is to create the life I see in my head on the mountaintop of my Green Mountains. To be true to the Tracy on the inside, I need to have people in the mindset of peaceful open-mindedness.

It is my desire to be independent to the best of my ability. I communicate more slowly than I wish to in this high-paced world but my thoughts are very quick. The touch of my facilitator must be one of peaceful calm. To build my dream of becoming an educator I pushed through many barriers of built up walls of enclosing people in institutions or encasing them in the trap of no outlet for their inner thoughts. It is more harmful to my soul to be in this stubborn body than I can type. To hope is to have faith in a future that includes professional growth and not the antiquated roles of paper shredding or stocking shelves but being respected for the knowledge this life has taught me.

My priority is to own or rent my own home or place with a good supportive roommate who is willing to be open to going through intensive training to get to see how my spirit relaxes with communication. I am not the person I appear to be upon a passing glance. To get to be the man I aspire to be is a lifelong journey. It is my vision quest to find more peace in my life. I think having my own home is the next step on my ladder of communication, as it is what I must have to be free of the encumbrances of others.

What are the specific challenges that you believe you face or will face in your adult life (housing, companions who assist you, living in communities, relationships, employment, education, etc.)?

As I mentioned, my priority is housing or more difficult to find is a companion to be my assistant in the life of becoming more independent. The hardest part is envisioning what I need but being unable to find the perfect combination of nice and firm communication partner. The world moves quickly and I need open-minded people who slow down to listen to my typing.

To live in the friendly Central Vermont community is a blessing. We have educated many people in our community by joining forces in schools. We have also spoken to legislators to let them see our intelligence. Our social fabric is beautifully sprinkled with an eclectic mix of abilities. There is more to be done and my fellow self-advocates and our supporters are tirelessly trudging up the trail to higher thinking. Through my work I have met many wonderful people who enrich my life and feed my soul to the point I dreamt of as a lonely boy.

My family loved me to the max; however, life in school absolutely traumatized me. It became unbearable to be thought of as a child who could not be educated. Now I mentor students. It is my mission to inspire children and show neurotypical kids how to slow down to listen to typing. More importantly, how to be a friend is what kids need to learn. I am thinking friendship is the way to open pathways to learning. On the mountaintop of success people need to have a hand to pull each other up.

On the top of my bucket list is to continue to learn and teach. I graduated from the school of hard knocks; now I try to prevent other children from living through the pain of a life of misunderstanding. I have friends who have made me proud by pursuing higher formal education. I would say my education continues through my work on the circuit of presenting to schools and communities. My employment is one of typing to educate. Working on presentations is on my mind constantly. I write it on my brain, and then I need my facilitator to be at my side to push the words out. To come from a menial job to a professional career is my proudest moment.

What types of programs or services would enable you to achieve the adult life that you envision and/or desire?

It is my desire to, of course, be as independent as my abilities allow. I want the same for all people. The Vermont legislature is better at listening to my typing than most other states. I understand politics and the need to divide services as fairly as possible. Ideally, I would like my services to include funding that is more reflective of the housing costs necessary to put me on the path to independence. The primary obstacle in my experience though is training of facilitators.

Harvey Lavoy, Pascal Cheng, Larry Bissonnette and I work hard to cover the state of Vermont on our shoestring budget but it is tough to get to everyone we would like to. For Harvey, it is a juggling of priorities that need to be addressed. My mission in life is to have the home of peaceful independence to communicate in daily life across environments. More than anything, I want to create a world of communication for all, to have our voices heard loudly from the hills.

Tracy Thresher
Self-Advocate, Activist, and Documentary Film Star

2012

30
Nov
2011

Advisory Committee and Board Resources for People with Developmental Disabilities

categories: Community, Education

CAB member Douglas Russell, Jr. of Worcester with DDS Commissioner Elin Howe and Regional Director, Terry O’Hare.

Here are some great opportunities for people with developmental disabilities to have a voice and share their perspective on advisory and policy making boards.

Citizen Advisory Boards (CABs)

Individuals with intellectual disabilities are encouraged to join the Massachusetts Department of Developmental Services (DDS) Citizen Advisory Board (CAB) . The advisory board meets monthly at the local DDS area office. Citizen Advisory Board members give input on services, share concerns that individuals face and provide suggestions for improving services. Board members also participate in evaluating programs through Family Citizen Monitoring.

As part of the legislative advocacy effort, CAB members also meet with legislators to inform and educate them on important issues. Most importantly, members host recognition events to acknowledge outstanding services.

For additional information about DDS CABs go to Frequently Asked Questions.

Individuals interested in joining a Citizen Advisory Board can obtain a CAB Application or contact Ralph Edwards, the DDS Director of Office of Citizen Leadership, at ralph.edwards@state.ma.us or call (617) 624-7755.

Additional Resources

Boardsmanship Inclusive and Accessible
This workbook from People First of California Inc. clearly explains the role of board members and preparation for serving on a board.

Get on Board and Make Difference
Effective practices for including people with developmental disabilities as new members on boards and committees is presented in this document.

Facilitation Tips
The Board Resource Center provides this “plain language” check-off list for advocates to ensure they have a voice in public policy.

Facilitation Guide
This Guide is for facilitators offering support to people with developmental disabilities on advisory boards.

The Guide – NASDDDS Handbook on Inclusive Meetings and Presentations
The guide includes resources for conducting accessible meetings, presentations and a checklist for involving people with developmental disabilities.

Not Another Board Meeting, Guide to Building Inclusive Decision-Making Groups
This publication is helpful for support personnel working with people with developmental disabilities interested in being involved in decision making groups. To order copies call Becky Thrash at (508) 945-9941 or email ocdd@ocdd.org . You will only be charged for shipping cost.

09
Nov
2011

Being a Board Member is an Honor

categories: Education

This week I introduce Mary Blauvelt as a guest blogger

My name is Mary Blauvelt and I have a developmental disability. But because I have a disability, it doesn’t mean I can’t do the things I want to do.

I go to the Minute Man Arc Day Hab and live at Carter house in West Concord. In my spare time I go to ceramics and chorus. In the last musical I was Tiger Lilly, the Indian princess in Peter Pan. I am also a member of a book club and President of the Minuteman Self Advocacy group. I was also in a walking club until it got too cold.

Becoming a Board Advisor

About a year and a half ago I joined the Eunice Kennedy Shriver Advisory Committee. I have a supporter who brings me to the meetings and helps me when I need help. I like the meetings; I like them a lot. I learn about the things they are doing at Shriver.

At one of the meetings I met John, who came to Minute Man to meet my friends and talk about using computers. It was called a focus group and he wanted to know how easy or hard it was for us to use computers and get on websites. I learned a lot. Now I go into the computer lab at Day Hab and am saving to buy my own in the future.

And a Board Director

I am also very proud to be a member of the Minute Man Arc Board of Directors because everyone can’t be on it. I have a mentor, Liz who talks to me about the agenda before the meeting and helps me at the meetings if I need her. It is an honor. We learn about the programs, and talk about how to make things better

Contributing to the community

I think the other board members like hearing what I have to say. I also get to vote which feels good because everyone doesn’t get a chance to vote on certain things. It is a good way to let your voice be heard.

Even if you are a person with a disability, you can still be on a board. No one can turn you down because you have a disability, but you should be prepared. You can go to a training like I did or maybe just try it out and go to a meeting first to see if you like it. Whatever you do, you should know about the different issues facing people with disabilities today.

02
Nov
2011

People with Disabilities Have Major Impact as Board Directors

categories: Education

Ever been on a board of directors for a nonprofit? If so, you know it’s a pretty big responsibility.

You have meetings to go to, some more exciting than others. You have to pay attention to the budget and be sure money is spent in a responsible way. You attend fundraisers, bring your friends, and share your passion for whatever the organizations stands for.

And hopefully, the board you join represents a diverse community inclusive of those that the organization serves. For nonprofits serving people with disabilities, that simply means that the board should include people with disabilities.

Yet, for many this appears to be a challenge.

Challenges or excuses?

There are lots of reasons given for not having people with disabilities on boards.

One common excuse is boards shouldn’t include people that are actually being served by the agency. Yet it seems to be fine if it is a nonprofit with an educational mission and the board includes parents of children served.

Of course there is always the problem with comprehension. A person with an intellectual disability may not understand the discussion and may not even be able to read. But I have to ask, have you ever been on a board and sat through the financial report? Look around and tell me how many board directors are really grasping the details of the profit and loss being shared. Trust me; not many.

My personal favorite is the transportation challenge. How will they get there if they don’t drive? The fact that most board members are not only capable but very willing to pick up another person is never even considered.

Making it happen

This month we will speak to Board members at several organizations that addressed these challenges and made a conscious decision to recruit, train and support people with disabilities as board directors and advisors. We will also speak with a board member who is a respected member of the board and also happens to be a person with an intellectual disability.

As they share their experiences, the challenges don’t appear to be so challenging anymore. In fact, people with disabilities are not only capable of being board members; their valuable contributions clearly have a lasting impact on all.

16
Feb
2011

Thomas and Friends Connect through Song

categories: Arts & Fun, Community

This week I decided to attend a rehearsal for the Sing Along Singers, a chorus of the Special Needs Arts Programs (SNAP) and see firsthand what it was all about.

Simply put, it was wonderful.

While there, I spent some time with Thomas E. Largy, a member of the chorus whose enthusiasm was contagious. This week I share his thoughts on the chorus including friendships made, songs sung and the role music has played in his life.

Friendship through singing

“I first came to chorus a few years ago and only knew Marilyn Abel; she used to be my music teacher. Now I have friends from Lexington and Bedford. It is so nice here because we are all friends, we get along and we love to sing. I am enjoying it so much I come every week.”

Tom and I had arrived early to talk, but at this point, people started coming in and as friends do, they greeted each other warmly.

“We sing together but we also do other things like potluck suppers and sometimes we have pizza dinners. We have fun. These are my friends and we really care about each other. ”

A vast repertoire

As we began singing through their repertoire of songs, I was impressed by the wide range of music.

“I like the old classics like ‘I’ve Been Working on the Railroad’, but I also like to learn new songs. I listen to the radio that’s how I knew Dionne Warwick. But now I get to sing, ‘What the World Needs Now is Love’ with my friends, not just listen to the song on the radio by myself”.

Music makes an impact

“When you go places to sing, it gives people enjoyment. I love singing at the Youville Villas. Sometimes they listen and sometimes they sing. As long as they are happy, I’m happy”.

Tom then pulled out a spiral notebook and a keyboard he had brought with him.

“I like to write my own songs. I wrote a song with compassion because that means you care about people and that’s how I feel”.

He then began to sing me a song that he will perform in next week’s talent show, “I feel with my heart”.

And as I listened to the words, I realized through our common love for music, that Tom and his fellow chorus members had touched mine.

19
Jan
2011

Supporting a Personal Goal Leads to Success

categories: Community, Education

Last week we were inspired by Nora, a woman with Down Syndrome who lost 63 pounds on Weight Watchers. This week we will hear from some of the people she felt were important in the process. As they share their experiences with Nora, you will learn of the supports they offered that may be helpful for anyone with a disability trying to lose weight.
But as important, you will see the final result when someone is given support to reach their personal goal; a confident leader who also happens to have a disability.

Providing support

Once Nora set her goal of losing weight, her staff from Minute Man Arc, Ashley Poor and Marcia O’ Grady, worked closely with her by offering the following supports:
• Help in preparing a weekly menu and shopping list
• Food shopping with Nora to help her follow the list
• Providing transportation to and from exercise
• Visiting local restaurants to find healthy choices on the menu that Nora could select on her own
• Choosing healthy activities: Frisbee verses Nintendo or bowling verses going out to eat

Confidence takes charge

As Nora began to lose weight, she began to develop a whole new confidence. Carolyn Wellington, a group leader from Weight Watchers, describes the change in Nora as seen at the Weight Watcher meetings.

“At first, Nora came to the meetings and just listened. But as she started to lose weight, she began to realize that she could encourage others. There was a turning point at one meeting when somebody stood up and was talking about how hard it was to stay on the diet and all of a sudden Nora jumps in with ‘Just say no and eat a salad. That’s what I do’.”

And the thing is she did, so people began to listen.

As she worked towards her goal, Nora not only gained confidence, she also established credibility in the eyes of others. Nora was no longer the person with a disability, she was now a Weight Watchers success story and people were listening.

A leader emerges

Once Nora met her goal, she wanted to see her friends also make healthier choices.

She began by successfully leading the campaign to change drinks in the soda machine at Minute Man Arc to include healthier options. She also formed a walking club and was instrumental in starting a nutrition class at Minute Man.

Yet her most impressive achievement reaches far beyond her initial goal of losing weight. In 2010, Nora became a member of the Board of Directors for Minute Man Arc, taking on a leadership role that will impact not only her peers, but the community at large.

Nora’s story began with a message on how to successfully lose weight, but it turns out to be much more. She taught us that anyone can be a success if they have the determination to reach their goals and the support to get there.

Anyone.

14
Dec
2010

Giving Back: Time Exchange Promotes Ability verses Disability

categories: Community, Education

Last week we were introduced the Time Exchange of the North Shore, a local organization committed to providing a sense of community to all of its members. This week we’ll meet Michael Doherty, a valuable member of the Time Exchange who understands the value in being able to give and receive support from others.

Why the Time Exchange?

Michael shared the reasons why he initially joined the Time Exchange.

“Three years ago I had a stroke and was unable to return to work-I was pretty successful as an international banker. It was tough at first, but once I adjusted, I realized that I wanted to give back to the community. My mother set the example when we were young by all her volunteering; she taught me that reaching out to your community is rewarding.”

Michael further explained the value of being able to give to others, despite the long term effects of his stroke.

“The time exchange is like the people in the past who all got together to build a log cabin for their neighbor. It gives you a sense of community. I chose this organization because they see me as someone who has something to offer, not as someone with a disability.”

A valuable exchange

Michael started building time exchange hours by using his truck to help people move. He knew he couldn’t do the lifting or carrying but he could do the driving and offer the use of his truck.

As he became more involved, Michael was asked to join the “Kitchen Cabinet”, a small group of members who support the coordinator and board in managing the organization. The kitchen cabinet meets once a month, with separate committees meeting more often. Every hour of meeting time is banked in the exchange for services.

As Michael built up his hours, it was his turn to ask for help.

“I had a walkway at home from my fence to a deck that I was having trouble with after my stroke. When some members of the exchange heard about it, they offered to rebuild the walk for me. It took three men all day; 27 hours of time exchanged. It was a great day with the music going and people working together. Now when my parents visit, they can even get over the hilly terrain.”

Everyone can give back

Michael summarized his feelings being able to contribute to others.

“Just because I am disabled, it doesn’t mean I can’t help. Every time I help someone else, I get a shot in the arm of my own self esteem. For people with disabilities, I would say you need to find out what you can do, not what you can’t.”

22
Nov
2010

Ten Great Websites to Keep You Informed

categories: Education

Ready to get involved?

The following 6 website links will keep you educated on bills, community issues and state government throughout the year.

1. Where To Vote & to Locate Your Legislators will identify your elected officials and voting location.

2. Massachusetts Legislative Bills & Laws offers information on existing bills and laws in Massachusetts.

3. Massachusetts on Ballotpedia provides nonpartisan information on Massachusetts ballot news.

4. Congress.org provides information on public policy issues of the day and tips on effective advocacy. Sign up to get their weekly newsletter and an email of your representative’s vote on recent bills.

5. OpenCongress.org lets you know what’s happening in Congress by providing official government data and news coverage.

6. League of Women Voters/Mass is a well respected citizens’ organization that encourages community involvement and hosts political forums in various communities.

For Disability Issues, these links are all helpful.

1. arcmass.org Take advantage of what Arc has to offer to stay informed.

Sign up on their listserv and the Action E-List on Massachusetts Arc Legislative Action Center to be notified when you can make a critical difference on important state issues.

2. Impacted by Recent Cuts to Disability Services? Know Your Rights is a handy resourceful guide provided by Arc MASS

3. Mass Families Organizing for Change sponsors conferences, workshops and forums to educate individuals and community members about advocacy, services and local, state and federal resources.

4. Disability Policy Consortium members have access to advocacy training, lobbying leadership, legislative email alert service, and information on issues of importance. Check out their weekly updates on website.

Be sure to share your favorites with us.