Last Fall, The Arc of Massachusetts turned 60. A major milestone to be sure, and while the grassroots advocacy nonprofit has done decades’ worth of work to help enhance the lives of individuals with intellectual and developmental disabilities and their families, Executive Director Leo Sarkissian says the mission continues with several key initiatives on the table for the 180,000 children and adults it champions.

Transition with inclusion
Children with intellectual and developmental disabilities, such as Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses, become young adults, a time in which life beyond school should deliver new opportunities.

“Young adults were graduating from high school and there wasn’t enough funding for employment opportunities, so they were getting stuck — a waste of the education they received,” Sarkissian notes. “There’s been some headway in our state. A few years ago, a new employment plan was developed where the priority was put on employment.”

Yet, he notes, The Arc’s emphasis on post-school transition must continue, along with the need for a family plan for that critical time.

“We need to make sure people get help in the school years to have a plan, to think about the future, about what’s adult life going to look like at home, at work,” Sarkissian says. “We think there still needs to be a tremendous amount of family education about [transition] so planning is done in advance, so they ask for the right educational services while they’re in school.”

Then, he says, the young adult and his or her family can be empowered “so the planning is realized and carried out, and the person is supported. Too often kids with special needs are left behind.”

The Supporting Families campaign
Gone are the early decades of The Arc of Massachusetts’s existence, when parents of children with intellectual and developmental disabilities were told to put their loved ones in institutions or hospitals. Today, 18,000 families support their children — young and adult — in their homes, serving as primary care givers for a lifetime. Many of these families don’t receive enough financial support from the state Department of Developmental Services in order to do this.

“The kinds of services for families offered by the Department of Developmental Services has declined per capita in Massachusetts over the past 20 years. It’s declined not because spending has declined, but because there has been more of a response,” Sarkissian says. “And what’s happened is the family, whether it’s a young child or an adult, they’re not necessarily getting the help they need to keep doing what they’re doing.”

For families who can provide care for their loved one, not only is living at home better for the individual, but it’s also more cost-effective. For example, a residential school placement can cost $200,000 a year, Sarkissian says.

However, caring full-time for a person with a disability can affect everything from a caregiver’s ability to hold a job to their ability to get a good night’s sleep. An increase in family support funding could allow a caregiver the opportunity to work outside the home, buy adaptive equipment for the residence to improve their loved one’s quality of life, or even pay someone to take the “night shift” so the caregiver can get a decent night’s sleep.

The Supporting Families Campaign (supportingfamilies.org) is urging families to share their stories with their legislators so lawmakers can understand how an increase in funding could improve their lives. The effort is a collaboration between The Arc of Massachusetts, the Association of Developmental Disabilities Providers, Massachusetts Families Organizing for Change, Advocates for Autism of Massachusetts, Autism Speaks, and the Massachusetts Down Syndrome Congress.

Sarkissian says Feb. 11 is Supporting Families Day at the State House, during which The Arc is asking families to visit their legislators and ask them to support funding the program, a proposed $100 million over four years.

Employment
The Arc (thearcofmass.org) champions dignity and respect for its constituents, and one way to foster that is by increasing job opportunities.

“In our community, we have a higher unemployment rate than in the general disability population,” Sarkissian notes. “Employment is an important area and we need to really grow it. Obviously, it gives people respect and a sense of pride when they work.”

Self-direction and self-determination
One goal the general public may overlook or take for granted is that of a person’s ability to choose. Sarkissian explains: “Imagine someone who lives in a group residence. He’s 30 years old. He has an activity he’d love to do once a week with a group, but the staffing is such he can’t do it because they can’t get him there. It’s not just a matter of budget, but of helping folks have more choice in decision-making, to help people get more choice in their daily lives.”

The Arc of Massachusetts has spent more than a half-century providing support and services for families, educating lawmakers and the general public about the abilities of people with intellectual and developmental disabilities, and advocating for their rights and inclusion in the community. Sarkissian says progress has been made, but more is needed.

“I do think people in the broader community have gotten much better at understanding people with disabilities, but I do think there still is a gulf between people appreciating that disability is a natural occurrence in our world,” he notes. “If someone has a disability, it doesn’t mean they shouldn’t have the same opportunities as someone else. Until we see more people integrated, more people included, more people with all kinds of impairments doing things, I think we’re still going to lag behind understanding.”