Education - INDEX

Category: Education

01
Jun
2011

Adult Family Care through a Provider’s Perspective

I first took on the Adult Foster Care (AFC) program as a part time project. It has grown so rapidly that I quickly began to work on it full time. After 25 years of working in group homes and day programs, the change in job responsibilities was welcome. And although I will admit that pouring over regulations and standards is not the most exciting way to spend your day, this work has been wonderful.

Much of my career in human services has been with adults, some of whom spent many years in our state institutions. Their families long gone or maybe they just gave up hope that anything better would or could happen for their loved one. I became their surrogate family.

Families face unimaginable challenges

I confess I never gave much thought to the families of the people I helped move out of the institutions; didn’t see much point to it since we never met. I never considered the difficulty of birthing and raising a child with a disability. I never considered the heart-wrenching decisions that need to be made that leads to institutionalization. Never thought about the sacrifices and the adjustments a family makes. Never thought about a time when institutionalization was the only humane option in this country.

I quite honestly, did not give much thought to how families manage life when a member has a disability or a debilitating disease. I simply had no idea of the lengths to which families go to take care of each other and a member with special needs. That may be a reflection of my own family experience; it is clearly a reflection of my ignorance.

Then I had the honor of meeting some of the families in our AFC program. WOW! I had no idea. What a privilege it is to know these families. They move mountains and create miracles every day. I stand in awe.

Adult Foster Care prevents institutionalization

I did not know about the AFC program until I stared working on it. Now I want everyone to know that there is help, both clinical and financial. Gone are the days when institutionalization was the only option. With the AFC program, we can help and support families who choose to take care of a loved one at home. Our aim is to help delay or totally prevent the need for institutional care. There are ways; and we can assist. Let us know how Adult Foster Care may help you or someone you love.

23
Mar
2011

ACCESSING HOSPICE CARE FOR PEOPLE WITH DISABILITIES

categories: Education, Family, Health

Through our blogs this month we have learned that people with disabilities, like everyone, deserve to live out their lives with respect and dignity. And when faced with a choice on where to receive end of life care, many people are choosing to die at home.

Through the stories shared, we also learned about hospice and their essential role in providing services and support to everyone in the process.

The Hospice Care: A Consumer’s Guide to Choosing Hospice Program is a helpful guide to make educated decisions about end-of-life care.

In Massachusetts there are sixty two licensed hospice programs. If you are looking for a hospice program in your area, the following website is extremely helpful.

Hospice Palliative Care Federation in Massachusetts
(781) 255-7077

Alphabetical Listing of Hospices
Hospice Locator by Town
Hospice Locator by Services
Hospice Residential Facilities

Caring Connections offers information on the health and wellness of the family caregiver, bill management, home care help & community outreach resources.

VNA Hospice Care covers towns in Eastern Mass
Works with individuals with intellectual disabilities in group homes in collaboration with the Department of Developmental Services. Staff works closely with residential and day program staff to help individuals function to their best capacity, in comfort and joy.

On our website, New England Index also has a listing for hospice care at home or in a residential setting.

DisabilityInfo.org – Hospice Care -At Home
DisabilityInfo.org- Hospice Care – Residential

It is important to note that the VNA Hospice Care program in Woburn was the only resource I could find that works specifically with individuals with intellectual disabilities in group homes. They are available to offer support and training to service providers on hospice services and philosophy. For more information about hospice for individuals with intellectual disabilities contact VNA Hospice Care at (781) 569-2888 or Nancy Ledoux,VNA Hospice Care Chaplain, voice mail at (781) 569-2822.

Let us know if you have experience with any other hospice programs in the state that you personally would like to share.

16
Mar
2011

Supporting a Person Who Chooses to Die at Home

categories: Education, Family, Health

This week I am pleased to introduce a guest blogger, Kathy Kopitsky, who shares her personal experience in supporting Ralph and several other people with disabilities who chose to die at home.

As a manager of residential programs I have a lot of meetings to attend. And even though I try to not let my emotions get in the way, it is really hard sometimes. It is really hard to not let my emotions get involved when meeting about something I feel strongly about personally: the right to die at home.

Over the years, I have had the privilege of helping six individuals and their families enter into hospice and come to die at home. Realize that “dying at home” meant a group home where other individuals continued about the business of their daily lives.

Understanding a need to go home

In the beginning, when I first pushed for someone to die at home no one was happy. His name was Ralph and he had no family left, except those of us at the group home. He was temporarily in a nursing home recovering from serious wound care when he had a heart attack and ended up in the ICU at a Boston Hospital.

As I stood in that ICU next to his bed, I thought about visiting him every day at the nursing home over the past few weeks. And every day I saw him, he wanted to know if I was there to bring him home. That was all he wanted, for me to bring him home.

It was at his side in the ICU, with him unconscious and intubated, that I decided I would fight to bring him home with hospice care; that that was the right thing to do. The seven other gentlemen he had been living with, a few for over 20 years, deserved the right to be with Ralph in the end. The agency was not happy. The state was not happy.

I made the arrangements anyway. I made them, because Ralph wanted to go home.

Challenges faced

As the final pieces were put into place, and everything from equipment, to staffing, to transportation had been arranged, I leaned close to Ralph in that ICU bed and told him as quietly and assuredly as I could, that I was going to take him home now.

I watched his face relax and he breathed his last breathe.

I was holding his hand tightly and I cried. Not only because I had just lost a friend, but also because I had failed to do the one thing I really wanted for Ralph: to bring him home to die, his home, surrounded by the people who knew and loved him the best.

A lesson learned

Since my experience with Ralph, I have encouraged families and staff to talk about death, dying with dignity and hospice care as early as they can in anyone’s illness. I have the seen the benefits of using hospice care as I have helped five other people die at home surrounded by the people they love.

The lesson from Ralph is simple; it is never too early to take good care of those we love.

09
Mar
2011

Hospice Program Embraces People with Disabilities

categories: Education, Family, Health

This week I introduce Nancy Ledoux, a chaplain for VNA Hospice Care in Woburn, MA. Nancy brings over 12 years of experience providing support for people with disabilities choosing to die at home.

Hospice team addresses challenges

Nancy began the discussion by explaining some of the unique challenges faced.

“For a person with a disability, going home may be with their family but it also may be going to a group home. Either way, we are there for everyone. In the group homes we work with staff, housemates and the family when involved. We have a strong team including a primary nurse, social worker, home health aide and my role as chaplain.”

As we talked further, Nancy spoke of her collaborations with organizations that serve people with disabilities.

“Over the last 8 years, groups of area nurses from the Department of Developmental Services (DDS) started meeting with us to streamline the regulations, making hospice care easier to offer in group homes. As a result, more vendors are choosing to offer end of life care.”

Dying at home is a life experience for everyone

Supporting a person who chooses to die at home has an impact on everyone involved. Nancy shared her personal thoughts.

For people with disabilities, “Dying can be so bewildering, but choosing to die at home is universal. Giving the choice is human and humane.”

For staff, “When young or from a different culture they may find it unconscionable to let a person die with comfort measures only. But the social worker and I encourage them to talk and really listen. It is very heartening to see the change that occurs”.

For family, “If a family member is in a group home, they may want to camp out there. Staff and roommates can feel elbowed out, but with support they learn to respect and support each other. ”

And for the housemates, “They get it. In fact, they get it better than a lot of us do. We encourage them to sit with their friend, which many choose to do. By being there through the whole process they also get to see they will not be abandoned when their time comes”.

Hospice program embraces the entire community

This conversation with Nancy gave me hope.

At a time when we worry about budget cuts effecting services for people with disabilities, Nancy reminds us there are programs in our communities committed to offering their services to people with disabilities.

And as a result, even through one of the most difficult times in a person’s life, everyone wins.

02
Mar
2011

Dying with Dignity: The Conversation Begins

categories: Education, Family, Health

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.

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.

12
Jan
2011

Nora’s Story of Weight Loss Inspires Us All

categories: Education, Health

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 been 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.

22
Dec
2010

Finding Your Strengths – Locating a Massachusetts Time Bank Near You

categories: Community, Education

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

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.”

08
Dec
2010

Neighbors Helping Neighbors: A Time Exchange Creates a Community

categories: Community, Education

As 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”.

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?