Patients with disabilities are largely underserved by hospices, but they represent a growing need as well as an untapped market for providers. Hospice companies are developing programs to meet the specific concerns of these patients to improve access to care.
Almost 40% of people 65 and older had at least one disability from 2008 to 2012, according to a 2014 U.S. Census Bureau report. More than a quarter (25.4%) of disabled seniors were 85 or older, though that age group represented slightly more than 13% of the nation’s aging population, the report found. California, Florida, New York and Texas had the largest concentrations of older adults with disabilities.
These statistics can help to anticipate future disability prevalence in the older population, according to Wan He, a demographer from the Census Bureau’s Population Division.
“The figures can be used to help the older population with a disability, their families, and society at-large plan strategies and prepare for daily life tasks and old-age care,” Wan said.
Seniors older than 65 represent the bulk of hospice care recipients in the United States, according to the National Hospice & Palliative Care Organization. The Census Bureau reported last year that the aging population has grown by 34.2% during the past decade.
The number of seniors who have an intellectual or developmental disability is projected to nearly double, reaching 1.2 million by 2030, up from 641,860 in 2000, according to a 2013 research from the University of New Mexico Department of Family and Community Medicine.
Mobility issues were some of the most commonly reported disabilities among seniors, according to the Census Bureau. Many struggle to remain independent. Seniors often experience serious difficulty in hearing, vision problems, cognitive impairment or a limited ability to perform self-care, such as bathing and dressing.
Only a small number of hospices nationwide have programs specifically geared towards these patients’ specific care needs.
“A reason this population is so underserved as a whole is that people with developmental disabilities haven’t represented a big part of the hospice population, so that’s likely why it doesn’t come to mind with hospice providers,” said Rich Johnson, president and CEO of ViaQuest. “Hospices might be a little bit uncertain about providing those services for these patients at the end of life.”
ViaQuest is an Ohio-based hospice, home health, behavioral and mental health provider that operates in three states. The company’s Hospice Specialty Program for Individuals with Developmental Disabilities provides medical, skilled nursing and behavioral health services, including comfort care and pain management to disabled patients at the end of life.
The program is focused on improving the quality of life for patients with disabilities through goal-concordant care.
Reaching more patients with disabilities will require hospice providers to invest in research, education and staff training to better understand the specific barriers that exist for this group. To achieve this, hospices are reaching out to community organizations to better understand and engage with these patients and families, or partnering with companies that offer specialized services, such as behavioral and medical disability care providers, according to Johnson.
“When you work in tandem with the medical aspect and the behavioral aspect, having that team in place really helps serve a person with developmental disabilities,” Johnson told Hospice News. “You have then have that developmental disability provider who understands the person, who understands what their behaviors are and can help that hospice clinician provide them with quality end-of-life care.”