Editor’s note: This is the third in a four-part series that is a collaboration produced by members of the Vermont Care Partners for National Developmental Disabilities Awareness Month, featuring stories by and about Vermonters with intellectual and developmental disabilities, as well as the work of Vermont’s Developmental Services network. This part is written by Lila Bennett, director of Marketing, Development and Community Relations at Northeast Kingdom Human Services.
This was written before the coronavirus pandemic.
Have you ever felt misunderstood? Have you ever felt judged? It can be exhausting to have to work hard to be appreciated and understood. For some of us this is only an occasional experience, but for others, it happens all the time. People with Intellectual or Developmental Disabilities (I/DD) face challenges others don’t and they have to work all the harder to get their voices heard and their needs met.
In Vermont, we have an incredible system in place that helps people with I/DD live life on their own terms. We have 11 Designated Agencies (DAs) and 5 Specialized Service Agencies (SSAs) established that employ Direct Service Providers- staff who help individuals with I/DD to live their best life. These organizations are nonprofits, independent from the state of Vermont. The agencies work in collaboration with each other, under an umbrella network called the Vermont Care Partners, or VCP. VCP helps with networking, with marketing, and with helping to support the agencies to provide the highest quality care. Without DAs and SSAs, more people with I/DD would be forced to be isolated, not employed, and less independent overall. Following are two powerful stories by individuals who rely on the support of DAs and SSAs. The stories exemplify the great work that occurs throughout these organizations and how DAs and SSAs improve lives and saves taxpayer dollars by supporting individuals to become contributors in the workforce.
The first story is by Hasan, who receives support through Champlain Valley Services, and SSA in Chittenden County:
“Hi – My name is Hasan. I came to the USA from Myanmar in 2008. I was 12 years old. When I arrived in Vermont, I didn’t know how to speak English. I learned it at Winooski High School. At my high school, I learned about Champlain Community Services and Way2Work. They helped me to find a job. Right now, I work at a hotel. I work from 8 a.m. to 11:30 a.m., sometimes later. I clean the lobby and tables. I also clean the pool area, outside areas, and sometimes I help do the laundry.
“I am telling you this because I want to share about a life of never giving up.
“Working in the community means to me that people support me and I support them. For example, my co-workers tell me step-by-step how to do parts of my job. Also, sometimes I help them when they are too busy.
“I am a bridge between people who I work with and my family. I act as a diplomat so they understand each other easier. I interact with people in my job by helping my co-workers and sharing stories with the hotel’s guests. In my job, I meet lots of people from different countries and cultures.
“Now that I have my job I am a different person. For example, I am now interested in new skills. I am also now Secretary of the Self-advocacy group Champlain Voices. I want to live independently, so I can live life my way.” (Story by Hasan of Champlain Valley Services)
The next story is about Donna, an individual who works with Northeast Kingdom Human Services. Donna has been working with NKHS since she was a young child, and is now in her early 40s.
“Every day, I set the tables for lunch. I put out fruit and napkins,” Donna said proudly, when asked about her job at the Derby Elementary School in the lunchroom. Her smile and the sparkle in her eyes were further proof of her love of the job. Today, Donna is a strong, reliable, independent woman. She goes to work every day, and goes home satisfied to her own apartment, afterward. Donna’s life wasn’t always so straightforward, and it was her perseverance and support from her DSPs that has helped her thrive in her life today:
“April in Vermont is usually snow covered and damp, with brisk and bone chilling winds. April 1979 was no different. That was the day Donna was born, in the back of an old parked school bus in the most remote part of the Northeast Kingdom. One of several siblings, the family lived with no water, a small woodstove, and scant food. Donna remembers the cold winters. One by one, each of the children was found, often after being hidden by mom and dad, and brought into the protective custody of the state. When Donna was 5, the Department for Children and Families came and took her away from the discomfort, but also from everything she knew and loved. Donna missed her mom and dad, especially when she was bouncing from foster home to foster home, which happened for two years until she was adopted by her forever home.
“Donna had to learn every day things most of us take for granted. Donna never had playdates or preschool or warm sheets or a balanced meal. Never did she have those things until she was taken from her family. It was a tradeoff, and one that tore Donna to pieces. She was sad, and living the way the rest of society does and expects, was very hard for her. The people Donna learned to count on were her Direct Service Providers from Northeast Kingdom Human Services. From when Donna was 5, all the way until the present day when Donna is about to turn 40, Donna has people who have taught her that her voice and her life matter. Donna graduated high school and is gainfully employed at a job she loves! Through NKHS Donna has joined the Green Mountain Self-Advocates, an organization of self advocates that assist other self-advocates to lead, empower and live independently. Recently Donna became the treasurer of the organization for the entire state! She is already the treasurer for the local chapter. Donna has her own apartment and lives independently, without guardians of the state. Donna had a wonderful boyfriend for a while too, and understands the importance of healthy relationships. As if she hadn’t lived through enough though, her boyfriend died of cancer. Donna was sad again, and it was with the help of our NKHS counselors and her Green Mountain Self-Advocate friends that she made it through the grief. She has even gone on to take leadership trainings, becoming a certified leader for Self-Advocates across the state.
“Today, Donna is a contributing member of society, a taxpayer, and a strong leader in everything she takes on. Donna is absolutely the picture of success and strength and love. It is for people like Donna that all of us here at Northeast Kingdom Human Services work so hard and so passionately. Donna is one of thousands of people with stories of trauma, hardship and survival that we must continue to reach and to support. NKHS is proud of Donna, and Donna is proud of NKHS.” (story written by Lila Bennett)
March is Disability Awareness month. It is an opportunity for those of us who work in the DA’s and SSA’s to speak out about the hard and important work we do, to raise awareness about why supported employment and living not only improves lives, but strengthens entire communities.
For more information about Northeast Kingdom Human Services visit our website at nkhs.org or call 24/7 at (802) 334-6744. Or visit our website at nkhs.org. This series is a collaboration produced by members of the Vermont Care Partners statewide network of sixteen non-profit, community-based agencies providing mental health, substance use and intellectual and developmental disability support. To find an agency near you visit https://vermontcarepartners.org/agencies/
