Tag: disability programs


Dec
2011

A Network of Resources Provide Support for People with MS

categories: Multiple Sclerosis

Jane’s story this month illustrated just one experience with MS; the unpredictability of the disease causes everyone with MS to experience it in a different way. But many people also struggle with similar challenges. MS attacks  the central nervous system of the individual diagnosed, but its impact has a ripple effect on their family, career, life plan, and the community.

This week we share the comprehensive resources available to all people with MS, their families, friends, and providers.

To learn about multiple sclerosis:

The National Multiple Sclerosis Society website has extensive information on MS.
www.nationalmssociety.org
You can also call our Information Resource Center at 800-344-4867.

To learn about local programs:

The Greater New England Chapter serves 19,000 individuals and families affected by multiple sclerosis in Maine, Massachusetts, New Hampshire, and Vermont.
www.msnewengland.org

If you or a loved one is Newly Diagnosed:

You can receive information through our Knowledge is Power Program, a free, at-home educational series written by Dr. Rosalind Kalb, a highly regarded author and psychologist. Receive new topics each week in the convenience of your home.
Knowledge is Power

If you would like to speak to a peer with MS:

The Peer Support Program offers information, emotional support and encouragement via the telephone to individuals living with MS and their families. The program matches trained volunteers with individuals looking for support with their own MS experiences.
Peer Support Program

If you would like to learn about the Greater New England Chapter’s Financial Assistance Program:  

We recognize that MS is a costly disease and encourage all individuals who need help to apply. Any person diagnosed with MS, living in Maine, Massachusetts, New Hampshire or Vermont is eligible. The Chapter can provided limited funding in select categories.
Financial Assistance Program

If you feel you need more comprehensive support:

Home LINKS is the Greater New England Chapter’s short-term care management program. The goal of Home LINKS is to promote enhanced quality of life and independence for people living with MS. This program helps by providing information and referral, hands-on assistance, and financial assistance.
Home LINKS

If you are a professional who works with people with MS:

The National MS Society’s Professional Resource Center is the most comprehensive library of MS information in the world, offering information, publications, clinical consultations, and literature search services.
Professional Resource Center

Dawn Russo
Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society, guest Blogger

Dec
2011

Living with MS; 10 Years Later

categories: Multiple Sclerosis

woman riding bicycle with young boy following on scooter

Last week we met Jane as she was diagnosed with Multiple Sclerosis (MS). Ten years later, Jane has found that many of her choices in life now require more thought, more planning, and more research; but she still has choices.

Use of medications

Jane’s doctor recommended that she start one of the disease-modifying medications. While there is no cure for MS, these drugs help slow the progression of MS and reduce the number of flare-ups. There are currently eight medications available. Though the drug doesn’t make Jane feel better, and she had to get used to the needles, she is committed to her treatment plan.

A wife and a mother

Jane’s other concern was her family. She was worried about pregnancy and caring for a baby due to her struggles with fatigue. She contacted the National MS Society for information and through the Chapter’s Peer Support Program, she connected with a mom who has MS and learned through someone else’s experience.

Jane’s daughter, Mary, was born 5 years ago. Jane experienced a flare-up of her symptoms six months after the birth, which was successfully treated with steroids.

Like many people, Jane and her husband sometimes feel that MS is the uninvited guest in their house. Though unspoken, it is part of every conversation. Jane found support from her peer counselor, who also felt the impact of MS on her marriage. Jane’s husband finds it helpful to speak with a therapist who has experience with chronic illness.

Jane feels impact on her career

It was hard to coordinate the daycare schedule, manage her fatigue, and keep up with the fast pace of her job as an ER nurse. Jane called the Chapter about her situation. The staff person consulted with her, providing information, discussing options, and supporting Jane.

It helped to have someone guide her through terms and programs, like the Family Medical Leave Act (FMLA), disclosure, and her rights as someone with a disability. She felt confident going to her employer to discuss possible accommodations and together they found a solution.

Dawn Russo
Dawn Russo, Senior Program Manager of the Greater New England Chapter of the National Multiple Sclerosis (MS) Society, guest Blogger

Jane accepted a new position that involved more desk work and no night shifts. She admits it’s less exciting, but she also takes less sick time now and spends more time with her family.

Join us next week as we visit Jane one final time to see another example of life with MS and learn more about the programs and services available from the National MS Society.


Aug
2011

Exploring Massachusetts Mentoring Resources

categories: Mentoring

Magnifying glass showing motivation terms and the word "mentor"This week we share the following resources for mentors looking to make a difference and special opportunities for youth with disabilities looking to reach their full potential with support from a mentor.

1. Partners for Youth with Disabilities
(PYD) offers one-to-one & group mentoring programs where adult mentors with and without disabilities act as positive role models and provide support and guidance for youth with disabilities. PYD’s unique programs include Access to theater, recreational activities at select Boston YMCAs, healthy living, and an entrepreneur’s project. For info on the Mentor Match program, contact Jeff Lafata, at 617-556-4075 x18.

Other resources on the PYD site include:

2. Best Buddies Jobs
an inspirational program that provides leadership development for people with intellectual and developmental disabilities. For additional information contact Jake Laverriere,  jacoblaverriere@bestbuddies.org ,  (617) 778-0522.

3. REC Connect
a program of the Department of Conservation and Recreation’s Universal Access Program serving people with physical disabilities in Greater Boston, Worcester and Holyoke, MA interested in expanding their recreation opportunities. REC Connect is currently looking for Peer Mentors and Volunteers for adaptive recreation. To apply, contact Heidi Marie-Peterson at Heidi.Marie-Peterson@ state.ma.us.

4. Mass Mentoring Partnership
is the statewide umbrella organization for more than 170 organizations supporting 23,000 youth in mentoring relationships.

  • Mentoring Opportunities Near You
    provides a searchable database by zip code and distance.  For an “Advanced” search, you can narrow it down by age group.

5. Mentor:  National Mentoring Partnership
provides a variety of mentoring resources and publications.

Also check workplace human resource department, schools and universities for possible mentor / mentee opportunities.


Aug
2011

AJ Shares his Experience as a Mentee

categories: Mentoring
Larry and AJ
Larry (mentor) and AJ (mentee)

This week I have the pleasure of introducing AJ, a mentee in the Partners for Youth with Disabilities (PYD) program. AJ described the program, his friend/mentor, Larry and why having a mentor made a difference in his life.

Introducing our mentee

AJ began the discussion by telling me a little about himself.

“I go to Campus Academy in Stoneham, am 18 years old and I live at home. School is going well and I would say someday I want to be a woodworker. I made a really nice coffee table for my Mom out of a piece of wood and liked doing it. I have had a mentor for about five years.”

What is a mentor?

I asked AJ how he would describe a mentor.

“A mentor is someone to talk to if you have any issues, but you can also have fun together. We go out to eat, go to bookstores, events and sometimes we go to Jordans in Reading. My mentor, Larry, lives nearby so he doesn’t have to travel far to see me.”

AJ was 14 years old when he first met Larry. He spoke of him fondly, describing a friendship that has grown over the past five years.

“Larry is my best friend. He would do anything for me and I would do anything for him.”

Yet AJ used the following qualities to describe Larry as not only a good friend, but a mentor that made an impact on his life.

“What’s important if you want to be a mentor? I would say you have to be a good listener and you need to have a good sense of humor. Larry does. We also both have disabilities, but that doesn’t really matter. We have the same interests.”

A mentee becomes a future mentor

I imagine AJ and Larry will continue their friendship in the years to come.

Yet it is also important to know that Larry has inspired AJ to give back to others. He described his plans for the future.

“I want to be a mentor myself someday, so I can help somebody the way Larry helped me.”

… And that is how a mentorship program can ultimately make a difference.


Jun
2011

Resources for Adult Family Care in Massachusetts

categories: Education, Home

hands holding hands

This month Kathy Kopitsky, Director of the Adult Family Care (AFC) program at the Minute Man Arc in Concord has shared insightful blogs of how Adult Family Care is a great option to living alone, nursing home or other institutional care settings.  Adult Family Care is an exciting and growing statewide program in Massachusetts.

What is Adult Family Care?

The term Adult Family Care (AFC) is also known as Adult Foster Care.  AFC is a MassHealth program which supports individuals age 16 and older who are unable to live independently due to a medical, physical, cognitive or mental disability.  AFC participants live with trained paid caregivers who provide daily care with activities of daily living (ADLs).

Certain relatives of a MassHealth member may serve as that member’s AFC caregiver.   Spouses, parents of a minor member (including adoptive parents), or any “legally responsible” relative of the member may not become an AFC caregiver.

For additional information about Adult Family Care, click on MassResources.org link.   Scroll down to the A-Z Program list on the left and click on Adult Family Care / Adult Foster Care (AFC). Here you will find excellent comprehensive information about adult family care eligibility, caregiver information, and how to apply for AFC services.

Locating AFC Provider Agency

Currently there are fifty seven AFC provider agencies in Massachusetts.   To locate an AFC provider near you:

  • Contact your local Aging Services Access Point (ASAP) to request list of AFC providers in your area.  To locate your local ASAP call 1-800-AGE-INFO (243-4636), TDD/TTY 1-800-872-0166, or go on-line to ASAP Locator
  • Contact Beth Shelton, MassHealth AFC Program Manager, at (617) 222-7485 or by email at beth.shelton@state.ma.us

Additional Resources

Click here for Adult Family Care / Adult Foster Care programs that are listed on the New England INDEX website.

Family Care-giver Handbook – Home Care
provides great information about home care services, assessments of physical, health and nutrition needs; and how to find and pay for services.


Sep
2010

5 Reasons Why We Need Another Disability Blog

categories: About This Blog


As budget cuts wreak havoc on services for people with disabilities, we have a choice.

We can continue to advocate for more funding.  Another option is to really listen to one another and learn what supports do exist.

At New England INDEX we choose the second option. As a  respected leader in providing information and resources to the disability community,  we are now offering a venue for people to give  suggestions and share their personal experiences in regards to the resources we write about.

Thus our blog begins.

And our Blog Coordinator is…

My name is Sue Crossley and I am the Blog Coordinator, which basically means I will either be writing the blogs or editing those written by others.

I have over 30 years of experience working for people with disabilities and their families during which time I learned a few important lessons.

  1. A person with a disability is very capable of choosing their own dream.
  2. To reach that dream in life, whether you have a disability or not, you need support to be successful.
  3. The people who support you may be your family or paid staff from an organization that only serves people with disabilities.

But they also must include people from your community who realize that you have something to offer

I have seen many people with disabilities reach their dreams, including home ownership, because people in their communities supported them.

As Blog Coordinator, I want to find the people and programs in your community who want to help others reach their dreams.

A Blog like no other

Five hands coming together like spokes of a wheel

Our blog will be unique for five reasons.
1. A different topic will be presented each month based on what you have been researching on our website.
2. Your stories will be shared so that we can learn what resources have truly made a difference in supporting people with disabilities in the community
3. Exemplary programs will be highlighted each month, programs that may not just serve people with disabilities, but rather the community at large
4. Guest bloggers will be introduced frequently to share diverse opinions and experience
5. Most important, this blog will provide an opportunity for you to become empowered by learning what is working in your community.

Know your community despite cuts

We all stand together at a crossroads as budget cuts are impacting the life of everyone in our state. At the INDEX we believe that our communities still provide a wealth of resources regardless of funding and we need to learn more about these resources together.

Our blog begins next week with the topic of holiday assistance.

We look forward to hearing from you.