Today, with advances in medical care, deinstitutionalization, and people working and living more productive lives, individuals with IDD are living much longer. Mark Keeley, President and CEO of the St. Louis Arc, recognized the growing needs of this aging population and committed to better serve and support them. Under the leadership of Mary Anne Tolliver, Director of Aging Services, Dautel Circle has become the premier retirement community for seniors with IDD.

Education of staff is paramount to guide them and the people they are supporting through the grief process. The goal is to understand what grief can look like, as it does not look the same from person to person, know how to respond to each individual’s loss, or just “be with them” to listen and provide support. The journey to the end of life can be extended or abrupt. Explaining what to expect through the grieving process and what is occurring can be especially helpful to someone with IDD. Grief counseling also gives individuals with IDD the mechanism to express their loss and sadness.

Since many of the aging individuals we support have declining health and decreases in cognitive and physical abilities, we are changing our supports around them. We have instituted a Holistic Aging Review committee to both meet funder due process responsibilities and provide a holistic review with an interdisciplinary team approach. The committee is designed to provide guidance and recommendations on medical/health concerns, medication review, behavior supports, restrictions, adaptive devices, and staff training for skill development and education. In addition to the review committee, we also provide grief counseling, support groups and hospice, and palliative care.

How do prepare someone with IDD for the news of a loved one being sick or facing a terminal illness? How do you support someone with IDD facing end of life themselves – and how do you support their family?

Mary Anne: The best practice we have found is being honest with the person affected about what is happening to them or to their loved one. We do this through words or pictures to help them understand. When discussing or explaining, it may not always be about a specific ailment or situation, but more about the understanding that their family member, friend, or housemate will no longer be here. We provide grief counseling to residents, staff, and families through our therapist, our Employee Assistance Program, and hospice and palliative care. Understanding their spiritual, religious, and cultural beliefs helps us to guide them through their grief. It is important to not push our own beliefs onto them but be a guide through this journey with their beliefs and understanding of death. We try and make sure the families are involved in decisions, spend quality time with their loved one, and have the opportunity to say goodbye. We also encourage families to include their loved one’s friends and housemates in the process so they can express their feelings and understand their grief.

Do you partner with health care professionals? If so, has the exposure helped build awareness and competency working with the disability community?

Mark: We have a long-term partnership with a primary care physician who consults with our RNs and who also provides care for many of our residents. We have also partnered with Visiting Nurses Association for hospice care for our residents. VNA understands the regulations we need to follow and works with us to provide the best possible care for our residents within their own homes.

What advice do you have for chapters who want to provide aging services/supports, but don’t have a program started yet?

Mary Anne: Aging, loss, and death are a natural process of life. People with IDD grieve the loss of a loved one just as the rest of us do. Providing support, respect, and inclusion in the process of loss and grief and not sheltering someone with IDD from this life experience is vital. Initiating a Holistic Aging Review committee, identifying or employing a reputable, credentialed grief counselor, and educating staff through professional training on aging and dementia is paramount to being able to accommodate these individuals through the natural progression of life and loss.