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by Lori Sedlezky
As more people with intellectual and developmental disabilities are living longer, Direct Support Professionals (DSPs) need to have the knowledge and skills to support them as they age. The guiding principles of person-centered services, individual empowerment, and valuing natural connections and relationships in the community reflect DSP best practices. These principles should continue to guide DSPs as they respond to the unique needs of individuals with disabilities in later life years. Within this framework, DSPs will need to be knowledgeable about the following five aging-related areas: (1) awareness of physical and mental health changes, (2) supporting aging in place, (3) retirement and later-life social networking, (4) grieving and loss, and (5) end-of-life planning. While each of these critical areas could be the subject of an entire article, below is a brief description of each and suggested steps DSPs can take to improve the quality of support they provide to older adults.
As individuals with intellectual and developmental disabilities age, increasing health problems and functional limitations occur. Changes in physical health and mental functioning that are part of the normal aging process begin in the mid-50s for the general population. However, people with intellectual and developmental disabilities often experience those changes earlier than people without disabilities. It is important for DSPs to learn about the aging process in relation to the individuals they support, and actively assist their healthy aging. This includes identifying early signs of physical or mental decline, and facilitating access to health care services. Some specific support strategies for DSPs to use include the following:
Growing old in one's own home as independently as possible is a common goal of most people. This goal is often difficult to attain for people with disabilities. Both people living with their families and those who live in congregate settings can face barriers to remaining in their homes in their later life years, including service structures, policies, and funding. As a person becomes older and experiences decreased functional skills, he or she may be moved to a home with other people who have similar functional support needs. This is often a more restrictive environment. DSPs can play an important role in helping people to live in their own homes as long as possible through these strategies:
Retirement is a normal part of the aging process for many people. It is a time in life that people often view as an opportunity to try new activities, learn new hobbies, and meet new people. Remember, retirement does not need to be determined by chronological age. Rather, it should be determined by the needs and desires of the person being supported as they are aging.
For those who do retire, it can be a way to become engaged in their community in new ways. Some may have worked the majority of their lives in a segregated setting or workshop. This next stage of life can offer time to become more involved in a wider community and other areas of interest. Formal retirement programs are currently more limited for people with disabilities than for those without, but the numbers are growing. There is also increased awareness and options for people to participate in integrated community settings.
Staying active during retirement can help to minimize the loss of existing skills. Maintaining physical, social, and intellectual skills helps keep a person feeling young, enjoying life, and staying healthier longer. Some support strategies for DSPs in this area are:
Many different types of loss commonly occur as people age, such as losses related to leaving friends at work, losing the skills or ability to participate in activities, and loss of friends and family to death. Friends and family become ill and may not be able to be as involved in the person's life. Oftentimes, people with intellectual and developmental disabilities have smaller groups of friends and family, or support networks, than people without disabilities. People with disabilities are often more isolated than those without disabilities, and may not have been part of a formal grieving process before. Anecdotal information suggests that often a DSP may want to "protect" a person from loss and grieving by not sharing information or supporting the person to participate in typical grieving processes. It is important that people with disabilities have the same opportunities as those without disabilities to grieve and experience rites of passage, such as wakes, funerals and other events. The DSP has an important role in supporting a person to cope with loss and grieving. Some strategies include:
End of life planning is another area in which a DSP may have a role. Learning about a person's wishes for their end of life care, including preferences about health care, establishing a living will, health care power of attorney, and other legal documents can all be considered end of life planning. End of life planning should be a thoughtful person-centered support process that includes people who are important in the life of the person you support. There are many models and programs available to support the end of life planning process. As a DSP you will want to learn more about end of life planning and understand your role in the process.
Aging holds opportunities and challenges for people with intellectual and developmental disabilities. There are many resources available for DSPs to use to learn more about their needs and how to apply the information to practice. This article is just a start.
Lori Sedlezky is Project Coordinator with the Research and Training Center on Community Living, University of Minnesota, and Editor of Frontline Initiative, a newsletter by and for DSPs (see http://nadsp.org/communications). She may be reached at 612/624-7668 or email@example.com.
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Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/231). Citation: Heller, T., Stafford, P., Davis, L.A., Sedlezky, L., & Gaylord, V. (Eds.). (Winter 2010). Impact: Feature Issue on Aging and People with Intellectual and Developmental Disabilities, 23(1). [Minneapolis: University of Minnesota, Institute on Community Integration].
The PDF version of this Impact, with photos and graphics, is also online at http://ici.umn.edu/products/impact/231/231.pdf.
The University of Minnesota is an equal opportunity educator and employer.