By Toni L. Eaton, RN, BSN, MS 

President & CEO of Old Colony Hospice & Palliative Care 

We’re beginning to become more comfortable as a nation talking about death and the hospice movement, and more than 90% of us say it’s important to talk about our end-of-life wishes.

Still, research shows only about a third of people actually spark up these conversations. For those with intellectual and developmental disabilities, those discussions happen even less often.

Old Colony Hospice & Palliative Care is among a growing number of hospice organizations to recognize the growing demand to provide care for patients with disabilities, their caregivers, and their housemates, people who have often been underserved throughout the country.

In particular, our Spiritual Care Coordinator, Maria Campbell, said services for people with intellectual and developmental disabilities in community homes and their caregivers have often been overlooked, but they are no less important.

Maria first noticed the gap in care more than a year ago when she was called out to provide spiritual support for a man in his 50s living in a community home. After the man died, one of the staff called seeking advice on how to deal with the grief they were feeling. Although not a family member, the caregiver had taken care of the patient for years and cared for them through their last days.

Maria said it made perfect sense, but it hadn’t occurred to her that her patient’s support provider might also need support. Hospice offers services such as spiritual support, therapy, and grief counseling to family members of those who die. But what about the staff who take care of them, often for years or decades? What about the others living in a community home?

Working with Michael Cruza, vice president of business development, and Sam Brooker, vice president of patient access and support services, Maria found ways to support that staff person and many others like him under the community care that OCH provides. They are now working with the state Department of Developmental Services to help not only hospice patients but also the staff and homemates of the patients.

“It is an underserved population that for so long just hasn’t been on the radar,” said Maria.

Ministering to those with developmental disabilities is both the same and different than working with the general population.

She recalled a story from last summer when a woman living in a community home with three other women died. They had been together for years. One of the roommates was very articulate and able to describe her grief. But she told Maria she was concerned about one of the other women, who was not as verbal.

As they gathered in the home’s living room, they talked about their friend and began writing down memories on purple seed paper in the shape of doves. The dove ornaments would be hung on a tree that would be planted in their friend’s honor, and later, the ornaments, which were filled with wildflower seeds, would be planted in the ground nearby. Maria noticed that the woman who was least verbal was quietly crying. She was not able to write down a memory.

Maria offered to write down a memory for her. She knew the two had known each other for more than 30 years and met when lived at the Paul A. Dever State School in Taunton.

“I was able to write about how they first met when they were young ladies together in school and she was able to be part of this activity to help with bereavement,” Maria said. “I always try to learn about the patient and the people around them, but what I’ve learned is that it is even more critical when they are disabled. Whether it is the hospice patient or those who love them, sometimes you really have to dig deep to communicate.”

Because Old Colony Hospice has been able to access community support programs, they can now serve people in community homes and programs.

“We are now able to do that, and it has made a difference for so many,” said Maria.

While only a small number of hospices nationwide provide programs specifically for these patients and their loved ones, Maria said the need and programming are only expected to grow.

The number of seniors with intellectual or developmental disabilities is projected to nearly double, reaching more than a million by 2030, according to 2013 research from the University of New Mexico Department of Family and Community Medicine.

Toni L. Eaton, RN, BSN, MS, is the President & CEO of Old Colony Hospice & Palliative Care of West Bridgewater, a dynamic non-profit hospice serving more than 55 communities south of Boston. OCH also runs the Dr. Ruth McLain Hospice Home in Braintree. A native and resident of the South Shore, Toni brings her compassion and experience as a nurse, veteran, and community leader to her insightful columns for South Shore Senior News. She is also the founder of Sunny Paws Dog Rescue. Several groups have honored her leadership, including the South Shore Women’s Business Network. She currently sits on the board of the Hospice & Palliative Care Federation of Massachusetts. For more information, call (781) 341-4145 or visit Old Colony Hospice & Palliative Care at