Bringing Together the Disciplines of Geriatrics and Developmental Disability

I am pleased that this issue of Clinical Geriatrics contains an article regarding the developmentally disabled elderly.¹ I first became personally interested in the special needs of this population over 20 years ago when I noted that persons with developmental disability were often being admitted to long-term care facilities for reasons that at the time I did not understand. Urinary incontinence, mild congestive heart failure, a need to take multiple medications throughout the day, among other reasons, seemed manageable to me with proper support and medical guidance, and should not have resulted in someone having to give up his or her community-based living situation and move to a nursing home.

Despite this, many persons with a developmental disability were being “prematurely” discharged from group homes where they had lived successfully for most, if not all, of their lives, to nursing homes. I soon came to realize that it was the way the group homes at the time were being funded for staff support that resulted in this outcome. The daily workshop that took clients out of the group homes was a way the homes could downsize their staffing for a number of hours during the day. There was insufficient staff to handle individuals who required ongoing and complex care. If someone was “too ill” to leave the group home at the prescribed time and go to the daily workshop, there would be insufficient staff left in the home to care for him or her. This indeed was a dilemma.

I was fortunate to be able to work collaboratively with individuals who represented both the geriatrics and developmental disability fields; we started a Geriatric Assessment Program for Developmentally Disabled Elderly with the goals of maximizing function for this growing population and providing education and guidance for their caregivers who were struggling to care for their growing number of elderly clients.^2,3 Perhaps something could be done to help deal with changes that were occurring as this population aged. I felt that just because someone had a developmental disability and age-prevalent problems was not a reason to be prematurely removed from his or her home. I also believed that they should be allowed to “retire” from going to “work” each day just as anyone else could expect to do as they reached a plateau in their lives. This was not the case for this population at that time.

I believe we were successful in helping a number of persons remain in their current surroundings, though I could tell that the staff at the group homes were not always thrilled to hear our recommendations, nor at the prospect of needing to care for yet another identified problem with everything else they needed to do. In some cases, we identified treatable problems that were not previously known and were able to positively impact on function. There were times, however, when we knew that our suggestions would not be followed—not out of a lack of interest, but because of reality, given the time and effort that these measures would take (as in the case of starting a toileting program or modifying the way people were fed their meals).

Most of all, we all learned a great deal in the process. Unfortunately, despite our efforts, our program, one of only two in the United States at this time, needed to close for lack of funding after a few years. The administration that initially provided the funding for the necessary staffing of our program needed to shift their resources elsewhere, and our fate was sealed.

I was pleased to see a chapter entitled “Mental Retardation” in the Geriatrics Review Syllabus from the American Geriatrics Society. This chapter discusses issues related to persons with developmental disabilities. It is time for all professionals working in the geriatrics field to become more knowledgeable regarding this growing population. It is estimated that there are currently more than 500,000 persons over the age of 60 who can be classified as having a developmental disability; this number is expected to continue to grow and includes individuals with mental retardation, cerebral palsy, autism, and epilepsy. A lot of the growth has been due to an increase in life expectancy. In fact, individuals with Down syndrome had a life expectancy of less than 20 years just a few decades ago; now with proper care, a person with Down syndrome can expect to live to approximately 60 years of age. Individuals who have other forms of mental retardation or another developmental disability can live as long as anyone else in the general population with proper care.

Yes, there are special considerations such as a high rate of dementia, behavioral problems, and incontinence, among many others, that may surface depending on the cause of the developmental disability; these diagnoses form the basis of much of what a geriatrician deals with on a daily basis, and a collaborative approach, in my opinion, can offer great potential benefits. We need to continue to find ways to bring together the disciplines of geriatrics and developmental disability, though, here too, funding remains a problem just as it is for any geriatric assessment program that cannot bill at an appropriate level to compensate for the additional manpower and extensive time involved.

As the U.S. government tackles the issue of healthcare reform, it is time to consider giving special recognition for efforts of geriatrics professionals and the care they provide to the aging population, whether they have a developmental disability or not. This could be accomplished with a new billing code or mechanism of reimbursement for these services, something the geriatrics profession has requested for many years without any result. The long-term financial benefit that would result from greater geriatrics involvement and improved quality of life for the patient and his or her caregiver would more than compensate for this well-deserved and much needed recognition.

Dr. Gambert is Professor of Medicine, Associate Chair-man for Clinical Program Development, Clinical Director, Division of Gerontology and Geriatric Medicine, Department of Medicine, University of Maryland School of Medicine, Director of Geriatric Medicine, University of Maryland Medical Center and R Adams Cowley Shock Trauma Center, and Professor of Medicine, Division of Gerontology and Geriatric Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.