Frontline Initiative Later Life Supports

Aging with dignity:
DSPs supporting individuals and families in the process


Susan Jakoblew is the Director at the Direct Support Professionals Association of Tennessee in the Nashville area. Susan is also an Editorial Board member of Frontline Initiative. She expresses special thanks to Les and Frances Page and their son for frankly sharing their thoughts and concerns for this article

There’s no getting around it. With every passing day we are another day older. And with every passing day, month and year, we are compelled to address issues of aging. As we age we may face mobility changes. We may experience physical illness and cognitive decline. There are also threats of isolation and loneliness. These are all issues that can significantly impact a person’s quality of life.   

People with intellectual and/or developmental disabilities (I/DD) are no different. They are living significantly longer lives. In part, this is due to improvements in the healthcare delivery system. This is also due to greater life expectations and improved living conditions. There are many Direct Support Professionals (DSPs) who can pat themselves on the back for their contribution to these improvements.  

It is estimated that the population of people with I/DD over the age of 60 will steadily rise from 642,000 in 2000 to 1.2 million by the year 2030. The fact remains that approximately 75% of people with I/DD live with family members. And at least 25% of family members are themselves over the age of 60. Growing concerns for the future of their loved one with I/DD can weigh heavily on families. Families are concerned that their loved ones will not be able to enjoy the same standard of living that they have always known. Les and Frances Page, a couple with a son nearing 50-years-old shared:

“It is important that our son always been seen as an individual, a person who cares greatly about others. He should be seen as someone who makes a contribution to his community and who has a meaningful life. His church and faith community have been an essential part of his life. It is most important that our son be able to continue in that relationship when we are no longer here. Our son is so much more than just a client with whom DSPs are assigned to spend a prerequisite number of hours.”

It is important that DSPs know how to support an individual with I/DD as he or she faces life changes. Some of these changes may include the passing of a loved one or transition in living arrangements. Other experiences may include the loss of a job or financial hardships. There could be changes in health such as a serious medical diagnosis. It is critical for DSPs to seek information and continued training in order to support someone effectively. As a result, DSPs will be able to better provide the emotional support and information needed by individuals with I/DD. 

 Many people are uncomfortable discussing end of life issues. These discussions are personal. They bring up a lot of emotions. But end of life issues are very important for individuals and families. DSPs can facilitate or support open discussions with families AND with individuals with I/DD. DSPs can advocate that these topics are discussed during support team meetings. From their experience, Les and Frances explained, “Meetings are so often crowded with paperwork and funder demands and requirements. Things of genuine concern often slip past.”

All too often the most valuable source of information, the family, passes on without sharing critical information. This information could make a real difference in the transition process and future days of the person with I/DD. Families must be encouraged to assemble and share information before the knowledge is lost. DSPs can certainly assist families in gathering this information, or futures planning programs can also help in these situations. By doing the work needed in advance, families and significant others can rest comfortably knowing that their loved ones are in good hands. This is usually from the compassionate and attentive support of DSPs.

In your daily support practice, remember the following insights shared by Les and Frances Page. In their words: “Each and every person, disabilities aside, is distinct and special. We feel strongly that DSPs can’t know too much about personalities, likes and dislikes, and areas of concern. These and all the other varied characteristics are unique to each person.” Therefore, DSPs are called to continue a learning process with the people they support. DSPs can continue to discover what is important to individuals and families in each day of their lives.