Category: Education

Dying with Dignity: The Conversation Begins

two white roses on black background

If you think about dying with dignity, it can bring up a different image for each of us. For some it may be going to a hospice center or hospital with professionals providing comfort care. For others it may be having the choice to die at home surrounded by loved ones.

When a person with a disability chooses to die at home, it may be their family home or a community living arrangement. The people providing support could include family members as well as roommates, service coordinators and a staff of paid providers.

Imagine all the different opinions and personal issues that come up along the way.

As a result, we need to begin talking about death and dying, the different roles people play and how it affects everyone involved in the process.

Facing death together

Talking about death is not an easy thing to do, and when someone is dying, it can be even harder. The finality of it all is hard to accept not only for the person who is dying, but sometimes, even more difficult for those left behind.

A few years ago my own Mom died. In her situation we were given time to do some planning; to bring her home with hospice and to support her in the choices she made at the end.

I won’t pretend that it wasn’t difficult, it was, but I knew my role and was given incredible support of my own throughout those difficult months… and I will say without a doubt it was one of the most beautiful experiences of my life.

Everyone plays a role with support

This month, we will talk to Kathy Kopitsky, a Residential Director who has supported several adults with disabilities who chose to die at home in one of her community living arrangements. She will share her role in the process, personal experiences and the impact they have made on her life.

We will also speak to Nancy Ledoux M.Div., a chaplain from the VNA Hospice Care who specializes in providing education for people with disabilities, family members and the professionals who support them in the process of death and dying.

The experience of supporting someone through the process of dying can be difficult, but it really is ok to talk about it.

For those who have been there, I’m sure they will agree; the sooner we begin the discussion, the better.

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.

Nora’s Story of Weight Loss Inspires Us All

This week I introduce Nora McShane as a guest blogger.

My name is Nora McShane and I have Down Syndrome. Since 1992 I was overweight. My weight made me slow and tired and wearing a 1X was ugly. There have beeNora McShane wearing shirt with "Less is s'more"n many challenges in my life. I moved into my own apartment in 2002, but food quickly became a big problem. I ate cakes and cookies, high fat meats, soda and chips. Eating out become my world.

In 2003 I started watching The Biggest Loser. I knew in my heart I wanted to lose weight but wasn’t sure how. The people on the show gave me hope. I knew I needed a plan I could understand. For several years I tried fad diets. Complicated recipes and expensive shopping lists were too much for me.

In 2007 my first niece was born and I realized I wanted to be a good role model for her. Because of my Down syndrome, I will probably not have my own children, so being the best aunt is my substitute. I thought about my niece and how I wanted her to grow up knowing her aunt as someone who is healthy and takes care of herself.

Weight Watchers leads the way

Nora before weight watchers
before Weight Watchers

I decided to join Weight Watchers, and my friends and the ladies at Weight Watchers taught me to read food labels and figure out food points. My staff from Minute Man Arc, Ashley Poor and Marcia O’Grady, and I wrote weekly menu plans following the flex plan. I practiced each lesson I learned at the Weight Watchers meetings and also started to exercise every day.

In 18 months I lost 63 pounds. I am now a lifetime member because I haven’t gained back a pound… Not one pound.

Looking great, feeling great

Now I have a lot of energy and I see a “hot ticket” when I look in the mirror. At 32 years old people say I look 25. Recently, my second niece was born. I look forward to chasing her and her sister around the house and swimming at the beach.

I know many other adults with developmental challenges struggling to maintain a healthy weight. I hope my story will lead them to follow in my footsteps.

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?

Building a Community through Time Exchanges

Balance scale containing money on one side and time on anotherEveryone needs support in their life to be successful.

It may begin with physical support, someone to take care of us as a child and later, depending on needs, as an adult. We also have a basic need to know that someone cares, for it is this basic caring and respect for one another that will truly make a difference in our lives.

A sense of community is lost

There was a time when our local communities provided this support, with each member contributing regardless of age or disability.

Yet as society and government grew, we began to pay people to provide support and our sense of community was lost in the process. This was never the intent, as social services were supposed to create additional support not replace our communities.
But the truth is most of us don’t even know our neighbors anymore, never mind other people in our town to help us out when needed. Simple tasks such as shoveling the driveway, raking leaves or maybe buying groceries can be overwhelming if you have to pay someone because you can no longer do it yourself.

Time exchanges build community

The good news is  there are groups known as time exchanges that are bringing our communities back. Their approach is to bring people together committed to supporting one another and building a community based on mutual respect. Every member, regardless of age or disability, has something to offer based on their strengths and interests while in exchange, they receive donated services as needed.
This month we will introduce The Time Exchange of the North Shore (TENS), a successful program in our local area. Through interviews with their director, Lynn Kilcoyne and one of their members, Michael Doherty, you will be reminded of a simpler time when people went out of their way for one another simply because they cared about the people in their community.
As you read about the Time Exchange, think about your own community and how it provides support to you or someone you know with a disability . . . and if not, is it time to think about creating a time exchange in your community?

Ten Great Websites to Keep You Informed

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.

Becoming a Leader in Your Community

Last week we were inspired by John, this week it continues with Andrea.

Andrea Kelly is a civic leader in Newton who has been actively involved with the League of Women Voters since the mid 80’s. Andrea is making a difference.

Getting Started

We discussed how she first became involved.

“I was home on maternity leave and was looking for something to do. A friend of mine told me about the League of Women Voters, so I signed up for their monthly newsletter to learn what was happening in Newton,” at that time a bedroom community to Andrea.

The newsletter presented many local issues and ways of being involved, one being observing the Aldermanic Land Use committee. It got her attention, an easy commitment of only two monthly meetings.

So she joined, and began her path to becoming educated.

Educated and involved

As we discussed the League and the role it has played in her life, Andrea described it with passion.

“The League is the only multi-issue, non-partisan, volunteer advocacy group in the community that educates people on an array of  issues.”

For Andrea, that comprehensive education provided opportunities to become involved well beyond land use.

“I became interested in affordable housing and joined the Newton Housing Partnership. As I became connected locally, I was appointed to the Design Review Committee that reviews all projects in the city.” child care and education also became dominant topics during the years her children were in those age groups.

We discussed other ways to become educated and involved.

“Some of the most active civic organizations in our community include churches and synagogues. They address social issues locally, but also on a national and international basis. ”

A leader emerges

In listening to Andrea, I began to realize that she had truly become a leader, respected not only because of her intelligence, but because she was passionate and obviously capable of getting things done.

“When I became an affordable housing advocate, I saw NIMBY (not in my backyard) from people in my own community. While it was frustrating, I quickly understood I had to take a deep breath and realize this was an opportunity for education, rather than becoming oppositional.”

That’s what can happen when you get involved. You learn patience, because change isn’t easy. You learn communication because you really need to listen to both sides. . . And in the process you may find you’ve become a respected leader.

So get involved; the community needs you.

Choosing to Stay Involved in Your Community

This week I introduce John Anton, a self-advocate who is an inspiration to others as he works hard to make a difference in his local and statewide community.

I sent the following questions to John about his role as a civic activist; he and his support advisor, Fran Hogan sent the answers.

John, please tell us about yourself.

“I am a Legislative Intern for State Representative Tom Sannicandro and a Legislative Advocate and Mentor at The Arc of Greater Haverhill/Newburyport. I am also on the Disability Law Center Board, a member of the Haverhill Trails Committee and am active in my church.”

How did you first become interested in issues in your community?

“When I graduated from high school I went to a sheltered workshop. We didn’t have enough work to do and it was very boring. I got jobs at fast food places and Market Basket, but I didn’t fit into any of these jobs either. Employment for me and other people with disabilities became one of my first issues. Transportation was also important because it was difficult for all of us.”

Tell us about your role as a legislative intern at the state house.

“I go to hearings, read bills and research what will affect individuals and families when budget cuts are made. Then I share this information with other self-advocates who follow up with phone calls, emails and visits to legislators when needed.”

How do you choose the issues you want to be involved in?

“It’s hard because they are all important. What helps is studying the state budget and seeing where funding cuts will affect services.
When I was chairperson for Mass Advocates Standing Strong (a statewide self-advocacy group), the issues of transportation, employment, closing institutions, guardianship, and self-determination all became important to me and they still are.”

Why should people be involved?

“You should want to be involved because your voice and your vote count (link to video in new window with John and others talking about importance of voting). Tax cuts affect everyone, especially people with disabilities and their families. If services are cut, individuals may have to stay home and family members will need to quit their jobs to take care of them. If you understand what is happening, you can do something about it.”

What are the best ways for people to be involved?

“Join a self-advocacy group or state-wide committee, attend conferences, volunteer in your community, and research things you are interested in on the Internet. It is also important that your legislators and local officials know who you are.
With the elections over, I will be organizing other advocates to join me in contacting the new legislators and educating them on what is important to individuals with disabilities. We also need to ask them how to work together in the future to make positive changes for everyone.”

Inspired yet?