Specialty Hospice for Developmental Disabilities

Updated on May 25, 2016

Exceptional Care for Exceptional People

As healthcare continues to advance with technology, individuals with developmental disabilities are living longer and have specialized needs for care and support particularly at the end of life. In addition, current trends show that the parents and caregivers of individuals with disabilities are not out living their loved ones, which require hospices to be able to provide specialized care for children and adults with disabilities who have a parent under their care.  For people with developmental disabilities, finding the right care during a life-limiting illness can be especially challenging. Many community-based settings are not equipped to handle the intricacies of hospice care in addition to the needs of an individual with development disabilities.

To begin to understand the challenges of this population we need to begin with the history.  It is unfortunate that there have been countless examples of individuals with life-long developmental disabilities, either being given inadequate care or flat-out being denied care when a health care provider determines treatment is pointless for someone with poor “quality of life.” The struggle for basic rights and inclusion has led families to view “end-of-life care” synonymously with “ending life.” In fact, individuals with developmental disabilities have the right to access the same care, including curative care (even when prognosis is poor), palliative care and hospice.   

Individuals with developmental disabilities are a vulnerable population that is underserved by hospice with <8% receiving hospice services compared to 43% of general population.  Most hospice providers experience with disabilities is those that are brought on through the progression of a terminal illness and related to end-of-life care which is a very different matter than a life-long disability. Hospice providers specializing in developmentally disabled individuals and their family members have specially trained interdisciplinary teams who are able to meet the needs of these individuals.   

Specialized hospice begins with honoring the community and acknowledging their struggles with basic rights.  We must honor the voices and the struggles of the individual, family and caregivers from very small things to very big things.  Communication abilities vary with the level of disability and specially trained staffs do not underestimate the ability to comprehend.  The focus should always begin with advanced care planning prior to a crisis. End-of-life planning for ourselves is difficult and we must understand this difficulty is escalated for parents, caregivers, and guardians when faced with decision making for another individual. The art of speaking in concrete terms promotes the empowering of an individual to be an active decision maker in their life which is a protected right. 

Disease management is complicated and developmental disabilities add extra dimensions to the complexity of hospice care. This can include who funds the care, which agencies are involved, which caregivers have the true legal voice, whether there are concerns with who cares for the disabled survivor, and so on.  Behaviors are often a form of communication for low functioning individuals who cannot verbally express what is occurring physically within.  This is critical in pain management and requires a cohesive collaboration between behavioral and medical clinicians.  Hospice is not a location but a service that can be provided in private homes, hospitals, nursing homes, group homes, and other community settings. Hospices providing specialized care recognize that caregivers and roommates of individuals with developmental disabilities are “family” and require personal-specialized care as well.   Families have dealt with loss their entire lives from the moment of diagnosis through life-long crises requiring the sensitivity of providers.   As with any loss, bereavement needs to be attended to, yet for some people with developmental disabilities, grief and loss issues can resurface in ways that traditional hospice professionals often misinterpret. 

In order to provide the exceptional care to exceptional people, we as a community need to work together to educate our families and individuals who live with developmental disabilities. The availability of specialized hospice providers ensures the same basic rights and benefits of hospice services while embracing, supporting and providing specialized needs to our developmentally disabled loved ones.

About the author:

Kathy Richard, MBA, RN is the Chief Clinical Officer of ViaQuest Home Health and Hospice, and a mother of an autistic son contributing to her advocacy in advancement of health care in the developmental disability community. She is responsible for the overall organization, development, and day-to-day operations in all of our home health and hospice regions. Kathy is no stranger to the home health and hospice arena, with having more than 25 years of experience, ranging from clinical to administrative. Prior to joining ViaQuest, Kathy consulted for numerous home health and hospice agencies in financial, operational, and program development including pediatrics.

ViaQuest, Inc. is a healthcare company that believes strongly in choice for its employees and the people it serves. Its areas of expertise include home health and hospice, mental and behavioral health, veteran services, employment services, and developmental disabilities throughout Ohio, Indiana, and Pennsylvania. ViaQuest offers quality, highly-personalized, specialized and cost-effective care, empowering individuals to function independently and live their best possible lives. Through a wide range of innovative services referred to as ViaQuest’s Circle of Care, a skilled, dedicated staff ensures that the people served are active participants in their own care. The company is based in Dublin, Ohio. For more information, call ViaQuest at 800-645-3267 or visit www.ViaQuestInc.com.    

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