Blessed & Thankful

By Kathy Campbell, Office Manager at The Arc of GHN

It’s that time of year, when we reflect on 2017 and look ahead to a new year. We give thanks for the blessings we’ve experienced and hope for what the new year can offer.

Here at The Arc of Greater-Haverhill Newburyport, we are grateful for everything our community has accomplished together this year. I joined The Arc of GHN team this year as part of a new middle-management leadership team and I am personally thankful to have joined an organization that goes above and beyond to listen to, empower, honor, and respect those with disabilities.

While I am new here at The Arc, the work we do has always been close to my heart. I have two beautiful daughters and one awesome son. My son just happens to have an intellectual disability. All three of my children are blessings to me, and they are the first thing I thought of when I asked myself what I am thankful for this year. Is each a different blessing? Yes. But a blessing just the same.

This doesn’t mean that I don’t know first-hand that being a parent is hard, especially of a child with disabilities. You always put them before yourself. It requires sacrifice and means feeling exhausted most of the time. On bad days, it makes you want to cry. Then, on good days, you want to pat yourself on the back because you made it through the day. But you wouldn’t trade this life for anything in the world. That’s parenting. We grow and we love in ways we never knew before.

Yes, having a child with a disability takes a strong person. Sometimes, I am not so strong and I have more than I can handle. It can be a tough and long road sometimes. Deep down, I wonder, could I do more? Could I try harder? Am I really doing all I can? And yet I stand strong.

We hear the saying “God doesn’t give you more than you can handle.” Even on those bad days, I must rise to the challenges and be the parent that my child needs.

Most parents with a child with a disability know that their child is a blessing. We parents could use a kind reminder that perhaps we are a blessing also. This is that reminder! So yes, I am thankful for my job at The Arc. I am also thankful for being a mother of a child with disabilities; it’s a life of joy, love and strength. For that I am forever grateful and blessed.

Communication as a Human Right

By Terry Robertson, EdD

It was our birthday. When I got to my twin sister Sherry’s house, she was sitting on the sofa in a pretty birthday outfit, complete with red lipstick. I was grateful for the big smile and hug she gave me when I arrived, and together we headed out for birthday dinner.

Along the way I updated my twin sister on everything going on in our family. Being non-verbal, Sherry smiled quietly and gently rocked back and forth in her seat, using elongated vowel sounds every now and then to echo sounds I made. I ordered the Chicken Special for each of us – I thought it would be a nice birthday treat. Sherry inhaled down her dinner roll, and I could see her staring intensely at my roll from across the table. “I know, you want my roll, right?” I laughed, and handed it over. We both had coffee and dessert too, since it was free for our birthdays.  All in all, it was a nice meal, and a nice time together. We topped it off with a walk around the lake, feeding the ducks as we went.

Back at Sherry’s home, I came inside to see her room, and saw how staff had thoughtfully laid out pajamas for Sherry. I hugged her goodbye and headed back home. But, as I reflected more and more upon the day, a feeling of guilt slowly washed over me. I realized that Sherry’s whole day had consisted of choices, and none of them had been made by her.

Imagine waking up and having no voice. Imagine someone making every decision about your life, rarely giving you a chance to voice your preferences about food, clothes, activities, people, and more. I imagine Sherry’s life feels this way most of the time. I thought back on our day together and wondered why I didn’t explain the menu choices so she could have chosen one of them. I thought about the dinner roll and wondered why I hadn’t ordered another one for her instead of giving her mine. I had controlled the whole encounter.  I thought about the pajamas already laid out for her and wondered what if she had preferred to sit up and have a cup of tea before changing for bed? In our own ways, we had all shown our love for Sherry, but we had denied her many opportunities to have a say about her day.

human_rightsEvery individual at every cognitive level deserves the opportunity to make decisions when they can, and the support to communicate their wants and needs as effectively as possible. Sherry communicates the only way she has known, using bodily gestures and verbal sounds. She was never assessed for her capacity to learn basic communication skills or use a communication device. It is amazing how she can communicate in her own way, but as I get older alongside her I realize it is not sufficient. All individuals with severe disabilities deserve to be evaluated for communication support. If they can be taught how to use augmentative or alternative communication (AAC) devices, we should find ways to provide them, because having the right to a voice is the foundation of life, liberty, and the pursuit of happiness.

Thinking back on the horrors of institutional abuse and neglect for many with severe disabilities in the past, a lack of communication ability is what prevented these individuals from voicing their fears, pains, and loneliness.  And with today’s adaptive technology and an increased awareness of the rights and responsibilities of individuals in the disability arena, I am hopeful that more choices in life can be made by those individuals who are impacted by those very choices. I am hopeful that families and care providers can become more aware of the need to provide communication support. And I am hopeful that I can find a way for Sherry to become involved in important choices in the years ahead as we celebrate many more birthdays together.

If you are interested in learning more about this issue, visit the National Joint Committee for the Communication Needs of Persons with Severe Disabilities’ website here.

Terry RobertsonTerry Robertson
Professor with expertise in language and literacy
Board Member of The Arc of GHN

Adult Family Care Today

By Heather C. Hess, AFC Program Manager, LSW

The Adult Family Care (AFC) program provided by our agency, and funded by Mass Health, is steeped in the fundamental belief that people with disabilities, those with a chronic illness, and the elderly have a right to receive their care at home or in a home placement. Choice leads to independence and dignity for the member, which helps foster a more meaningful and successful outcome. This is paramount to the success of the AFC Program.

At The Arc, we believe that part of our role is to help reduce stress for caregivers and decrease burnout. We are often the only contact families and members have. “Taking care of a loved one is hard work,” said Nayda Cristian, our Bilingual AFC Assistant Program Manager. “Having a team to support you and cheer you on makes the difficulties a bit less challenging. At the end of the day, if I have made just one family feel that they are part of a team and are not alone, I have done my job.”

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The Power of Peer Support

“There is a certain power created when people of similar life experiences come together around shared issues and are able to support each other.” – Barbara Pandolfi, Peer Support Manager.

The notion of Peer Support is widely acknowledged as a legitimate form of support in our personal lives, as well as in many fields and disciplines. What distinguishes this form of support is that it is provided primarily by peers and mentors.

Here at The Arc, we focus on gifts and talents and look at the person not the impairment. The goal of peer support is to provide people with disabilities access to new and empowering opportunities which give them more choice and control over their life.

Peer Support is funded by the Department of Developmental Services and offers information for people with disabilities to share knowledge and experiences as well as emotional, social and practical help. It also provides a range of opportunities that amplify the voice of self-advocates and promotes more choice, control and responsibility in their lives.

Peer to peer mentorship challenges limiting beliefs often restricting people with disabilities from potential possibilities. It also provides psychological benefits such as increased self-confidence, improved problem solving, decision-making and coping skills. Moreover, it promotes independent and interdependent living skills, as well as information on self-determination and self-direction.

Arc Peer Support

We use the peer support model in several different formats. We have a Peer Support Advisory Committee where members are paid to provide guidance, recommendations, feedback and direction to the program as well as The Arc. This committee meets every other week.

Peer Support offers:

  • Paid internships to explore employment opportunities and other areas of interest
  • Education and mentorship on leadership, self-advocacy and getting involved in your community
  • Trainings to self-advocacy groups, programs and conferences
  • An annual celebration every June

As you can see, there is no single ingredient that guarantees success. Outcomes are largely determined by each person’s needs, wants, commitment, and vision. Peer Support can be an invaluable tool in guiding the way. It is important that people are known for their gifts and talents and what they can contribute to the community. For more information contact Barbara Pandolfi at 978-373-0552 x206.

To view pictures of our Annual Celebration this past June please click the following link to our Facebook: Peer Support Pictures.

Staff Post: Abigail Eaves, Director of Programs

Recently, we celebrated The Arc of GHN’s 55th Annual Candlelight Ball. Once again, staff, families and people receiving supports came together for a night of fun, laughter and good food. It was a pleasure to be around the energy of so many compassionate people. This year’s theme was Family, Friends and Community; a theme which captures the elements that makes this agency such a wonderful place to work and which are the bedrock of our mission. In particular, it is our sense of community that strikes me as the driving force behind our efforts and the relationships we build.

“It is not more bigness that should be our goal. We must attempt, rather, to bring people back to….the warmth of community, to the worth of individual effort and responsibility…and of individuals working together as a community, to better their lives…”  Robert F. Kennedy

At The Arc we believe that community is not only where we live, and who we live with, but also a state of mind. Yes, we are here to collaborate with and support our neighbors, our local businesses and our local government; but it is more than that. Community is a sense of togetherness, a sense of belonging, a shared commitment to one another. To me, the Arc has a special spirit of community that celebrates our differences while embracing the common thread of humanity which ties us together. As a community, we are able to draw together to influence decision makers, to effect change and to show compassion and decency around us.

Arc Reach Pic

One of the most healing forces in our world is that of acceptance. It is feeling part of a community that captures that the most for me. As a community, we give each other permission to make mistakes, and to express our hurt, without fear of alienation. Allowing ourselves to feel part of a community can be scary. It can make us feel vulnerable and exposed. However, when we bring kindness and tolerance to each other, with time, trust develops and that vulnerability eases. When we allow ourselves to be a part of a community we grow and heal – from that stems an ability to share each other’s success and to celebrate our strengths.

At the Arc, I am overwhelmed at times by the transformation that community brings. Personally, I have lived it and professionally, I see it occurring with the people we support. When we see each other for the human souls we are and show kindness and understanding, we are accepting that life is a messy journey, unique to each of us but which, if we allow ourselves to lean in, can bring us to a place of contentment that can only stem from connectivity with those around us.

As our agency continues to evolve, it is my hope that we deepen our sense of community by finding more opportunities to connect with those around us with the goal of enriching the lives of our staff and those we support. I invite you all to find the moments in your life where you can connect and experience the joy that being part of a community can bring.

Abigail Eaves, MA, LMHC

Director of Programs

 

Welcome to Our Blog

The Torch

Like a torch illuminating the path, our blog, The Torch, sheds light on the voice and leadership of a person or group. At The Arc of Greater Haverhill-Newburyport we honor everyone’s voice; the voice of people with disabilities, their families, and the professionals who support them.  Everyone’s voice is important, and together, we are not only stronger, but also we can make what seemed impossible a reality. I look forward to the light that all our torches together will illuminate on the path we walk. This blog is intended to highlight these voices, these stories, and the burning spirit we share.

As the Chief Executive Officer of The Arc of Greater Haverhill-Newburyport, I am not alone in shedding this light. I am fortunate to be a team member of the 700 Chapters of The Arc nationwide.  Moreover, I feel honored to lead this Arc Chapter and be a part of The Arc movement. The Arc is the leading civil rights movement and largest advocacy & service organization for people with disabilities and their families in our nation.

Listening is at the core of my work and one of my personal priorities.  I am excited and dedicated to expanding the voice and possibilities of everyone.  I believe that as we all grow in our ability to listen better, hear more deeply, and allow for change, we will be well on our way to brightening the road of new opportunities and of inclusion. On our Mission and Vision webpage, visitors will see the picture where I pass the torch to one of our most successful clients, Joe Canto.

JoeCanto

The Passing of the Torch symbolizes our approach at The Arc: we believe in empowering people with disabilities and the self-advocates to speak up and to achieve their dreams.  Moreover, we believe in listening to their needs, and goals, as well as assisting them in developing custom tailored programming that will help them achieve those dreams.

With The Arc’s help, Joe received training in leadership, advocacy, and personal growth with the goal of embarking on a career as a professional advocate. Joe achieved his dream. Today, he works for the Human Rights Office of the Department of Developmental Services in Boston. As part of his job he gets to travel around the Commonwealth, advocating for people with developmental disabilities, and sharing his experiences.

Enrich your life today by joining us in bringing people with disabilities from the shadows into the light of inclusion!

— Luis Bachman, CEO