Category: Community

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

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

Advisory Committee and Board Resources for People with Developmental Disabilities

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

 

Rainbow Support Group: A welcoming place for LGBT people with disabilities

Rainbow triangle

This week we are pleased to introduce our guest blogger, Pauline Bosma, Project Consultant for the Rainbow Support Group of Massachusetts.

Groups provide support  around the state

The Rainbow Support Group (RSG) is for people with intellectual and developmental disabilities to help them be comfortable with who they are. We have four support groups in the state of Massachusetts and one in Rhode Island. The RSG is part of Massachusetts Advocates Standing Strong (MASS) and is supported by the Department of Developmental Services (DDS).

The RSG is for people who are gay, lesbian, bisexual, transgendered (GLBT) or who have questions about their sexual identity. The groups are hosted by different agencies across Massachusetts, with members of each group writing their own agenda.

Some of the activities the groups have done are: talking about rights, health issues like AIDS, and understanding what GLBT means. Some groups have attended Pride Day events in Boston and Northampton. It is up to the individual groups to decide what is important and interesting to them.

The importance of a safe environment

I think it is important to have RSG because there used to be no support within the intellectual disability system for people who use services and are lesbian, gay, bisexual, transgendered or questioning their sexual identity. Support is important so people can live the lives they want to. The RSG gives them a safe, comfortable environment to talk about their issues, decide when they are ready to come out, and how to come out to other people.

Pauline Bosma
Pauline Bosma

I started RSG in 2004 with help from the Kennedy-Donovan Center. RSG is modeled after a similar group in New Haven, CT. For several years, there was only one group, in Central Mass. In 2008, I went to Commissioner Howe of DDS, along with MASS coordinator Ed Bielecki, DDS trainer Pat Carney and MASS coordinator Elaine Spier-Kalmar from western MA. We asked the commissioner about trying to expand the groups across the state. Commissioner Howe has supported a small project through MASS that has allowed us to grow to where we are now.

If you are a person who is interested in learning more about the RSG, you can reach us at: rainbows_58@yahoo.com , mass1998@earthlink.net , Patricia.Carney@state.ma.us or call: 1-866-426-2253 (1-866-IamAble).

The Role of Shared Living Providers in Supporting Healthy Sexuality of the People they Serve

Shared living is one of the residential service models available to individuals with intellectual/developmental disabilities (I/DD) who receive services from the Department of Developmental Services. Shared living services provide support to the individual in a natural, family environment.

An important focus of shared living is to foster relationships and promote community inclusion. Sexual expression can be a part of some relationships.

A provider’s role

Shared Living Providers (SLP) can support the person living in their home to develop a positive sexual identity. By providing a supportive, non-judgmental environment, the
SLP has the opportunity to assist the individual with building a healthy self concept, positive self esteem and confidence to discover who they are as an individual.
Another area that a
SLP can influence is the person’s experience of intimacy and building healthy relationships. It is very important for a
SLP to work with the individual to build a home environment that is safe and comfortable. It takes time and acceptance of the individual for who they are to build a trusting relationship and create an intimate environment where the person feels at home.

Some things to remember

• A person with I/DD is a sexual being and has the same need for relationships as everyone else.

• It takes time for a person to adjust to a new living situation and being around new people. Trust has to be built between everyone. Making consistent time for 1:1 attention is a great way to make a person feel accepted.


SLPs have to know their own limits; sexuality is complicated. The topics being raised may challenge your comfort level or may be topics you don’t know well enough to confidently discuss. As a
SLP, if you need help, ask your case manager at the agency.
• Take the person’s questions seriously. They are struggling to understand their feelings and learning how to express them.

Together we can make a difference in how a person with I/DD understands their sexuality. In turn, they can learn how to enjoy their relationships in safe, healthy and fun ways.

Chad Linstruth
Chad Linstruth

Six Great Opportunities for Music and Song

Here are six wonderful music opportunities for people with disabilities in Massachusetts.

Integrated Chorus Programs

1. Special Needs Arts Programs, Inc.(SNAP), Lexington
SNAP offers an array of music and arts programs including the “Sing Along Chorus” and “Sing Along Singers”, two integrated choruses for teens and adults with disabilities. Both choruses meet weekly throughout the year offering social activities and community outreach through performance.

All are welcome to attend SNAP’s Spring Sing-A- Long Concert on Sunday, April 3rd at 3:00 PM at First Parish Church, Lexington.

For additional information about the choruses, contact Marsha Martin, Director at (781) 862-8971 or marshamartin@yahoo.com.

2. Minute Man Arc Chorus, Concord
This adult chorus for people with developmental disabilities is also directed by Marsha Martin with weekly rehearsals from September thru June. Musical performances are presented in June and during the holiday season.

The 2011 June performance will feature the musical, “Peter Pan”.

For information about joining the chorus or volunteer opportunities, contact Darcie Heller, Recreation Director, at (978) 297- 7936 or dheller@minutemanarc.org

3. South Shore Conservatory Community Voices, Duxbury
This twelve week choral opportunity is offered to people with developmental delays, ages 16 years and older. Performances are scheduled in December and June.

Eve Montague, the choral director, can be reached at (781) 934-2831 x20 or e.montague@sscmusic.org.

Read about Eve Montague’s passion for music and directing in a recent article in the Patriot Ledger, Music Therapist Enriches the Lives of Special Needs Teens and Adults.

Music Workshop

4. Community Access to the Arts (CATA), Great Barrington
CATA offers a singing workshop which meets weekly from fall thru spring and is inclusive for all ages. Participants perform in a May program with the other CATA performing artists.

Contact Adrienne Brown, Program Coordinator, at (413) 528-5485 x105 for music workshop availability.

Music Education Programs

5. The Boston Conservatory Autism Project, Chestnut Hill

The Boston Conservatory Autism Project is the first music program in the nation for young musicians, ages 8 – 22 on the Autism Spectrum. The program develops the musical talents of students who may eventually have the skills to apply to a Conservatory or College Music Program at the age of 18. Weekly music lessons are offered in voice, violin, viola, cello, piano, guitar, music theory, and music composition.

To learn more about this exciting program, check out their five minute music program video.

6. Berkshire Hills Music Academy, South Hadley
Berkshire Hills Music Academy is a private, post-secondary school for young adults with musical aptitude who have learning, cognitive or developmental disabilities. The curriculum is designed to promote job readiness as well as to cultivate abilities in the performing arts.

For further information on the Academy call (413) 540-9720 x202

Be sure to share with us any additional music and choral opportunities in Massachusetts that you enjoy.

Thomas and Friends Connect through Song

closeup of Thomas Largy

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.picture of two men arriving

“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.

picture of Sue Crossley with Tom Largy

Supporting a Personal Goal Leads to Success

a new sprout in soil is held by hands that are held by other handsLast 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 emergesNora McShane wearing T-shirt with "Less is s'mores"

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.

Finding Your Strengths – Locating a Massachusetts Time Bank Near You


In this month’s blog, we were introduced to Lynn Kilcoyne and Michael Doherty of the Time Exchange of the North Shore.  Time exchanges, also referred to as time banks, are an innovative option for people who want to give and receive services that can make a difference in each other’s lives.

How It Works

For every hour of service you perform for the time bank community, you receive one time dollar towards any service you need in exchange. Services may include child care, housekeeping, home repairs, cooking or simply providing transportation. No service is too small, as time exchanges offer the basic supports people need to get through the day.

Time Banks in Your Area

The following information will help you learn more about six time banks in your community within Massachusetts. Sign up and list what you would like to offer other community members. ..And if you’re not sure what you can give, coordinators will help you find your strengths and abilities.

Time Trade Circle
2 Corliss Place, Cambridge, MA
(617) 299-0882
Carol@timetradecircle.org, Louisa@timetrade.org (email preferred)
Serves Greater Boston area

Cape Cod Time Bank
5 Stage Coach Road, Harwich, MA
(508) 470-8587
John Bangert, capecodtimebank@gmail.com
Serves Cape Cod and Nantucket

Time Exchange of the North Shore
52 Andrew St, Lynn, MA
(781) 479-8407
Lauren Kilcoyne, lauren@timeexchangenorthshore.org
Serves North Shore area

Valley Time Trade
126 Main Street, 2nd Floor, Northampton, MA
(413) 585-0373
Jenny Ladd, vtt@commonwealthcenter.org
Serves Pioneer Valley

Cape Ann Time Bank
12 Calebs Lane, Rockport, MA
(978) 546-9551
Nancy Goodman, ngoodman52@yahoo.com
Serves Cape Ann area

Co-Act Timebank of Berkshire County
17 Cone Hill Road, West Stockbridge
(413) 232-7937
Michael Costerisan, michaelcosterisan@yahoo.com
Serves Berkshire County

For additional information go to www.timebanks.org

Giving Back: Time Exchange Promotes Ability verses Disability

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.”

Neighbors Helping Neighbors: A Time Exchange Creates a Community

photo of Lauren Kilcoyne with signs about the Lynn Time ExchangeAs a child, I remember when the road in front of my house needed to be repaved; my father, along with the neighborhood men would get together and pave it. That was how things got done back then.

This month, I was reminded of that same community spirit when I interviewed Lauren Kilcoyne, Coordinator for the Time Exchange of the North Shore.
Here in Lynn, that sense of community lives on.

A community is born

The Time Exchange began in 1996 when a group of parents of children with developmental disabilities came together to offer each other babysitting and help with chores; simple but basic supports that made a difference.

As more people joined, they formalized the group into the Lynn Time Bank and received funding from the Department of Developmental Disabilities (DDS). For every hour of service given, a person would bank an hour of service to be used when needed

Over the years, they realized the time bank should include everyone, not just people with disabilities and their families. Lauren  describes the transition from the initial time bank into a larger community.

“We’ve reorganized in the last couple of years and have expanded from families within the DDS system to all populations, even expanding from Lynn to encompass the North Shore. We also include every ethnic group in our community since the area is so diverse.”

The organization’s new name, The Time Exchange of the North Shore, represents the wider community now being represented.

Everyone has something to offer

Lauren explains the reasons why people join the time exchange today.

“The sense of community is strong within the time bank membership. Meeting each other in the time exchange and putting faces to services makes it easier for people to request help”.scale and hour-glass

Presently there are 175 members of the Time Exchange of the North Shore that all give in a different way. There are tradesmen such as carpenters and electricians, along with others offering grocery shopping, companionship, childcare, and yard work.

Regardless of age, education or disability the idea of a time exchange is that everyone has something to offer their community; everyone.

And like the old days, neighbors are helping neighbors again and things get done.

Sound like a good idea?