People with intellectual/developmental disabilities (IDD) are reaching life-spans that are comparable to individuals without an intellectual/developmental disability. As this population is living comparable lifespans there are very little data and health care studies regarding hospice utilization and care for the IDD.
In the US it is estimated that approximately 6.5 million people are categorized as intellectual/developmentally disabled.
Data presented by Toni Benton, MD from the University of New Mexico stated in 2002 an estimated 641,000 adults with DD (Developmental Disabilities) were greater than 60 years old. The number of adults with IDD ages of 60 or greater is projected to nearly double from 641,860 in 2000 to 1.2 million by 2030 due to increasing life expectancy and the aging of the baby boomer generation.
With the increasing life expectancy and the aging of the baby boomer generation, palliative and hospice care for the IDD has been very limited. The palliative care professionals have very little experience in caring for people with IDD and lack specific knowledge, competence, and confidence when supporting patients through this journey.
People with IDD often lack the communication skills to convey feelings of illness or sickness, which means that by the time a diagnosis occurs, the interventions that could have occurred are often too late. Our family experienced this when our brother with IDD had a cancer diagnosis and went from the hospital to hospice. We had some difficulties in this experience that could have been prevented if we had been more aware.
The spectrum of IDD cases range from very mild cases where an almost normal life can be led to severe cases of IDD, which are often housed in adult residential care facilities. These IDD facilities serve a special function within our society. In the state of California, most adult residential facilities do not have hospice waivers. This means a resident may or may not return to the care home that he has known for years once a hospital admission occurs.
“Mike could not end his life in the home he had known, surrounded by the people who knew him best, because the home was not qualified by the state for end of life care.”
A better way to understand this is how it went with our brother, Mike. When Mike was diagnosed we knew, as his conservators, that we would not subject Mike to chemotherapy or any other treatment. Cancer had already spread to other organs in his body. Mike was in the hospital and was awaiting placement.
Our case manager tried very hard to find placement for him with personnel experienced in the care of IDD. But for days there was no space available. We then had to decide if we had to place him in an SNF (Skilled Nursing Facility) which would have no experience with his IDD behaviors. In addition, this also meant he could not return to the care home where he had been living for over 10 years. Why? Because the adult residential care home did not have a hospice waiver. Mike could not end his life in the home he had known, surrounded by the people who knew him best, because the home was not qualified by the state for end of life care.
Eventually, Mike was placed in an adult residential care home with personnel experienced in the care of IDD patients. However, they literally just received the hospice waiver and had no experience with hospice care. And, as we discovered, when an adult residential facility receives a hospice waiver, the staff is not required to have hospice care training. This means the end of life care can be fraught with difficulties, even under the guidance of the visiting hospice nurse. My brother was placed in this home with caregivers he did not know, in a home he did not know, and feeling ill. Our family was at the hospice house every day, but again, he did not see us often previously, so basically his care was entrusted to the family and strangers. And from his perspective, we were all strangers.