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An Issue of Age

November 28, 2014

We all know that aging is an inevitable part of life. It begins with our birth and ends with our last breath. But although we know it is completely natural for it to happen, it does not make it any easier to accept. Perhaps it would be beneficial if, instead of viewing aging as a bad thing, we would have the wisdom to be grateful for the opportunity to grow older. We all know friends and loved ones who were denied that chance. Focusing on having the privilege of a long life gives us greater sensitivity for those who are not so fortunate.

Thankfully, due to significant medical advances, people with developmental disabilities are leading longer healthier lives. For example, in 1980 the life expectancy for a person with Down syndrome was 25. Today it is 60. Improved prenatal care and safer deliveries, in conjunction with better long term treatments including proper nutrition, more effective medications, innovative surgical procedures and intensive therapies, have combined to increase the life spans of people with disabilities. Science is now blessing families with extra decades to create many more memories to treasure.

But as the lifespans of those with intellectual challenges increase so does their need for assistance. Longevity often requires long term care. It is critical that the extra years that can be added to a human life be of the highest quality possible. That time should be fulfilling for each individual with as few medical issues as possible. Unfortunately, that is not always the case. Physical and mental deterioration often go hand in hand with age, but it can be even more pronounced in people with developmental disabilities.

Sadly the aging process for these individuals is often accelerated. Their physical and mental capabilities are adversely affected at a younger age and can occur more rapidly. It can be incredibly difficult to watch the people we care about change. The breakdowns that can take place in a friend or family member can be heartbreaking to witness. But for people with intellectual challenges, diminishing skills and changes in behavior do not affect their humanity. They do not decrease the value of their lives.

Another serious issue regarding the aging of this population is the fact that people with developmental disabilities are now outliving their parents and in some cases even their siblings. Increased life expectancy has created the need for housing and supervision for individuals who are entering the later stages of their lives just as they are becoming more vulnerable due to the loss of the natural supports provided by their families. This is an issue that will continue to escalate in the future, and it is a dynamic that society must be willing to deal with in a comprehensive and caring way.

We have spent the last few decades focusing on childhood development, education and employment opportunities for those with intellectual challenges, but now we also need to concentrate on their well-being as they age. We must determine how we can assist in making the closing chapters of their lives comfortable, peaceful and fulfilling. We must be prepared to meet the needs of people who have not historically lived into their 70’s and 80’s. This will take planning, resources, funding and most of all compassion.

As time takes its inevitable toll we have a moral obligation to treat older people with developmental disabilities with complete respect. We cannot allow a person to be marginalized or to be considered less because of their age. We have a responsibility to accept them for the human being they are at this point in their life. It is not right to judge them against their former selves. Our expectations must be adjusted to the reality of who they are now. We must not create additional stress in their lives by presuming they can still be as they once were.

We must acknowledge the fact that the aging process greatly increases the vulnerability of people with intellectual challenges, making them far more susceptible to mistreatment and even abuse. This type of demeaning behavior can lead to physical harm as well as psychological damage including lower self-esteem and self-worth. We must be vigilant to ensure that the safety of these individuals is our highest priority. As they become more dependent on others for their well-being we must be there for them. We must be willing as a society to step up and offer the appropriate care that each person needs. As their physical capabilities and mental acuity decrease we must correspondingly increase our support for them and their families. We have a moral responsibility to offer the most comprehensive care possible. In many cases their quality of life is in our hands.

We all know how emotionally painful it can be to watch someone we care about slowly decline due to age. We feel frustrated and helpless. But although we are powerless to change the course of time we can certainly increase our patience and understanding of their particular situation. We can accept the limitations that age is imposing on their lives without giving up the effort to keep them safely involved in life. And we can ease our sense of loss if we will remember to appreciate the time we’ve had with them. The laughter, the joy and the love that was shared is what made their life a worthwhile journey.

How we respond to those who become increasingly dependent due to age sets the precedent for how we will be treated when we grow older. Eventually there will come a time for each of us when life will become overwhelming. We will no longer be able to cope with the challenges that we are presented with each day. Some of us will recognize when we reach that point and others will not. In either case, when that time arrives, we will begin to require others to provide us with safety and comfort. From that moment on we will rely on their assistance to ensure our well-being. It is even possible we will no longer be able to speak up for ourselves or defend our rights. We will be forced to trust others to respect our humanity, and that is a trust that cannot be betrayed.

Everyone deserves the highest quality of life possible as they grow older. The fight for equal treatment for people with developmental disabilities must continue from the womb through childhood into adulthood and to the end of their lives.

We must always remember that those who have become increasingly vulnerable due to their age are not burdens. They are loved ones who are cherished by their families and friends.