The Graying of Disabled America

INTRODUCTION

For the first time in human experience persons with developmental disabilities are living longer. The average life span of an individual with Down Syndrome has increased from 9 years in the 1920s to 65 years or greater as of the end of the 1990s.

In large part, this increase in life span is directly attributable to a general improvement in overall health care throughout American society. Even more crucial to persons with developmental disabilities has been the near-abolition of institutionalization. Individuals who would formerly have died from substandard health care, substandard personal care, poor food, overcrowded conditions, and invidious benign neglect, can now avail themselves of resources in the general community, along with all the supports which those resources provide.

While it was not uncommon for whole wards full of institutionalized Down Syndrome individuals to die en masse (due to a heightened risk for infection as a result of having no filtering nasal hair as an incident of the condition), with the end of institutionalization and the development of community-based resources, Down Syndrome individuals and others are now living near-normal or normal life spans. Medical breakthroughs in treating congenital heart disease have lessened their impact on the Down Syndrome individual, as heart defects are a major characteristic of this syndrome as well.

This increase in life span has brought with it numerous unanticipated problems. For the first time in human history persons with developmental disabilities are outliving their parents who have historically always functioned as their primary caregivers. This has led to a need for residential and other options geared specifically to the needs of the aging disabled. It has also led to increased costs for health care beyond increases associated with neurotypical aging populations.

LIFE TRANSITIONS

Individuals with mental retardation and neuromotor disabilities may experience the effects of aging earlier than individuals without mental retardation or neuromotor disorders. Just as older individuals may require walkers, wheelchairs, or home health aides, aging developmentally disabled persons may require the same services sooner and more intensively. 12% of all people with developmental disabilities are over the age of 65 years. This translates to approximately to 500,000 individuals or more.

Just as with neurotypical aging individuals, disabled aging individuals will suffer reductions in functional vision, hearing, or balance. Due to the already limited nature of the senses or balance in disabled persons, even minor deterioration can cause major life changes. Likewise, it is not uncommon for neurotypical individuals to require increased medical care and medications as they age. This pattern is repeated in the aging disabled population, but to a greater extreme.

Just as communities are providing ongoing services to developmentally disabled children and developmentally disabled adults through in-school programming, day programming, workshops, group homes and the like, the need for disabled senior services is becoming acute. Systems of care management and medical treatment must be devised and implemented to assist the disabled person with life’s transitions related to aging.

DEPRESSION AND DEPENDENCY

Incidence of depression rises in the aging community. Nowhere is this truer than in the aging developmentally disabled community. Developmentally disabled persons who have struggled to achieve and maintain impressive levels of independence against intense odds throughout their lifetimes may be subject to severe depression as their functional capacity decreases and their independence erodes. The use of antidepressant medications coupled with counseling should aid these individuals in coming to terms with their increased dependence on others. In the case of less independent and more cognitively impaired individuals, this process is essentially the same, but is complicated by the fact that often these individuals do not have the cognitive ability or the physical capacity to communicate their needs, wants, or feelings. This increases frustration and may lead to acting out behaviors, or intensification of behavioral problems that existed previously.

Medications that aid in depression and behavior modification may be appropriate to use with such individuals. However, the use of such medications needs to be weighed carefully against the need for other, possibly contraindicated medications that will maintain the individual’s physical health. A physician should endeavor to use the fewest medications in their lowest possible dosages. Developmentally disabled people have often been subjected to medication regimes throughout their entire lifetimes and the addition of other medications for the control of physical changes associated with aging can complicate the psychopharmacological picture to an extreme degree. Typically older persons have an increased need for medications, but treating physicians should know that the disabled might have an increased vulnerability of the nervous system or other organ systems which will impact the efficacy and use of increased medications.

It also must be recognized that medical treatment increases as social and care management decreases. Developmentally disabled seniors face the possibility of almost complete loss of personal care skills and mobility, often at an earlier point than their non-disabled peers do. Thus, skilled nursing services might be called for at a younger age than otherwise.

Intelligent care management can offset total dependency for an extended period of time. Plans of care can be designed to reflect and enhance activities that the disabled person enjoys and can carry out with maximum independence. The home, group home, or other residential facility can have architectural and other environmental changes made so that the aging developmentally disabled person can maintain his or her independence of action for as long as possible. Daily activities can be routinized and simplified so that an aging disabled person can carry out activities without undue frustration.

GUARDIANSHIP MATTERS

For those developmentally disabled individuals in the community, existing community aging programs can be of inestimable assistance. Care management concerns in this area involve the adaptation of currently existing programs for the neurotypical senor to the disabled senior. Geriatric specialists need to be informed and trained in regards to the particular issues surrounding the disabled senior citizen.

Additionally, issues will arise regarding the developmentally disabled person’s right to self-determination. Developmentally disabled persons who are not the legal wards of others may be encouraged to create advanced directives, including Health Care Surrogates, Living Wills, and Durable Powers of Attorney so that authorized third parties can act on their behalf when they are not able to do so. It may also be to the benefit of certain disabled older individuals to seek to have a guardian or guardian advocate appointed. As this requires the renunciation of all legal rights, it is an option that should be considered carefully with a full appreciation of limitations that the developmentally disabled person will have to face as a result of relinquishing his or her rights.

In most cases where the developmentally disabled person requires a guardian, but does not have the cognitive capacity to make the decision independently, third parties will have to do so. Guardianship proceedings will require a court hearing to determine capacity, psychological and physical examinations of the developmentally disabled person, and the determination of the appropriateness of the possible guardian.

SPECIAL DOWN SYNDROME CONCERNS

While most of these issues will probably not confront the aging developmentally disabled person until he or she is well into the fifth or sixth decade of life, certain developmental disabilities such as Down Syndrome, exhibit their own complexities. Research has shown that 100% of adults with Down Syndrome over the age of 35 years develop Alzheimer’s Disease neuropathologies. There appears to be an intimate link between the genetic code controlling Alzheimer’s Disease and the genetic code controlling Down Syndrome. Dementia, of the Alzheimer’s type, typically does not occur until the Down Syndrome individual is over age 50, which is at least 15 to 20 years after the initial development of subtle neurological changes.

While this does not mean that all Down Syndrome individuals develop severe Alzheimer’s Disease, there is no question that the Down Syndrome population as a whole is at greatly increased risk for doing so. Therefore, Alzheimer’s-related and other aging issues must be addressed amongst the Down Syndrome population at a far earlier age than amongst other disabled populations.

It is important that caretakers exercise the utmost of respect for an individual’s dignity and emotional health when the issue of Alzheimer’s Disease is addressed. Due to the widespread attention which Alzheimer’s receives in the media, even a lower functioning individual may be aware of the nature of Alzheimer’s Disease, and may be frightened or profoundly depressed at the prospect of the deterioration relation to Alzheimer’s. Caregivers and other support staffers, professionals and lay people must work diligently to reinforce the individual’s inherent coping mechanisms and maintain a positive outlook so the individual can maintain his or her independence and self worth as long as possible.

CONCLUSION

Difficulties can arise, and unpredictable behaviors can be the result when what is familiar becomes unfamiliar and unrecognizable. Caregivers, in association with other professionals, should work to establish structures and limits and routines that the individual can follow at a minimum of upset and disruption.

There is no reason that an aging developmentally disabled person’s last years should be any less fulfilling than the last years of any other individual’s life. Developmentally disabled persons need support and understanding, with the involvement of compassionate and properly trained individuals assisting them so that they can live out their lives with dignity and quality.

ANDREA FRIEDMAN M.Ed, was formerly Assistant Director of Residential Services for AHRC of New York City. Prior to her untimely death she served as a Medicaid Waiver Coordinator and President of Advocates In Motion P.A., of Florida.

JEFFREY H. MINDE M.S.W., J.D., is President of the National Special Needs Network Inc., and is an attorney in private practice in South Florida. Mr. Minde was instrumental in designing the project syllabus for the University of Miami School of Medicine Center on Aging and Developmental Disabilities (CADD). He is a former Director of Social Work Services at Daleview Nursing Home and Manor in New York, and was Clinical Chair at the Nassau Center for Developmental Disabilities.