Episode 31 - Dr. Nancy Kelley-Gillespie and Dr. Karen Rolf: Too Old To Care?: Older Adult Caregivers and Their Children with Disabilities

Monday, October 19, 2009, 10:22:14 AM

Image of Drs. Nancy Kelley-Gillespie and Karen Rolf

Rising life expectancy over the last two decades has resulted in increases in the number of aging parents caring for adult children with disabilities later in life. Drs. Kelley-Gillespie and Rolf discuss their work to understand the needs of these families toward quality of life improvement, better services, and more informed choices for caregivers.

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Average Rating: 4.8 stars (5 listener reviews )

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Average Rating: 4stars  podcast 31 review/comments, Thursday, February 02, 2017

By KG :

This is an important and often overlooked topic within social work. Although I’m still a social work student, I do work with those with developmental and physical disabilities. I have begun to think about how the parents of those I work with will be able to provide care as the years pass and how I would handle dealing with such situations, as a social worker. I can see how overwhelmed these parents are and can only imagine how much more difficult it will become once they, themselves, are in need of further supports related to aging. I agree that how services are delivered and coordinated will need to change and grow as these needs do. More creativity may be required to provide the necessary support to all parties.

It also brings up the planning process for these parents. Just as many people plan for retirement or plan for their children’s education, these parents will need to create a plan of care for their children. With life expectancy of those with disabilities becoming longer and longer, parents need to be cognizant of the fact that they may not always be able to care for their children. What will happen if they are unable to care? What types of facilities are available for their children? Will they be able to afford the available facilities?

This podcast sets out an overview of what the issues are and becoming, along with, a call to policymakers to pay attention and step-up to address these needs to provide resources where they are truly necessary.

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Average Rating: 5stars  older adult caregivers and their children with disabilities, Wednesday, October 06, 2010

By Elise Beaulieu :

This is an excellent topic and discussion about an often neglected part of social work and case management. As a practitioner, I have found these situations to be very challenging. It is necessary to negotiate not just one area of service provision but two that are often at odds with each other. Parents of adult children with disabilities can be overwhelmed by their own needs and then to negotiate the avenues of care for their child or children with disabilities is equally difficult. As a result they may just "give-up" and attempt to manage untenable situations. This podcast helps to sort out some of the presenting issues and the need for policymakers to address and provide resources for these families.

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Average Rating: 5stars  caregivers and aging dependents, Monday, April 05, 2010

By Michelle Davis :

This was a wonderful podcast. It provides very timely information on the care of disabled individuals with disabilities. In the three decades since the start of deinstitutionalization, the care of disabled individuals has improved greatly. Unfortunately, not all caregivers are convinced that anyone could care for their adult children as well as they can. Or, perhaps some caregivers have come to be so attached that they are not ready to give up their role as caregiver. But these caregivers will not be around forever, and transitions will need to occur in the individuals' lives.

The question is, would caregivers prefer this occur while they are still around to assist their adult children in transitioning? Or, would they rather put it off until they are no longer around, causing their adult children to deal with their loss and grief while putting them through a major transition as they become wards of the state?

This podcast touched on important issues that are crucial for all caregivers to consider: planning ahead. Many parents of “able” children start college funds when children are still being potty-trained. Why should disabled children have any less consideration put into their futures? Not only should their living arrangements be planned ahead of time, their finances and care should be considered, too.

Once upon a time, disabled children were not blessed with longevity, but with improved care, the life-expectancy of the disabled population is much higher. Disabled individuals can live well into elderly years. Parents cannot expect that they will be there from their child’s birth until their death. That being said, new approaches are needed for parents planning their children’s future.

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Average Rating: 5stars  episode 31 - review, Sunday, January 24, 2010

By Siobhan :

Dr. Kelley-Gillespie and Dr. Rolf did a great job talking about the importance of care-giving for children with disabilities and the aging population. They talked about the importance of this in terms of appropriate plans of care, service needs, organization and delivery in order to ensure quality of care and life for aging parents and their children with disabilities. I found it very interesting that reciprocal care-giving was coined as parents and children care for each other and living arrangement trends show disabled adult children are less likely to move out and more likely to live at home. It was stated that reciprocal care-giving may be happening but the quality of care may not be enough. It was also reported that this type of household experiences more hospitalizations per year but no indication was provided as to why. It would be interesting to find out if lack of knowledge or education could be factor and if families are caring for each other the only way they know how. Also, exploration of financial means should be considered as medical devices, medication, and assisted living placements are costly. Little information was provided on the use and availability of assisted living homes which may have an influence on the reason why older children with disabilities remain at home. As the cost of living continues to rise, more families may only have each other to rely on. As a family member who has witnessed aging parents care for older children with disabilities, I am very familiar with the stress of caring, financial burden and emotional toll it takes on an entire family. As stated by both doctors, more research is needed to ensure the creation of a service delivery system that not only supports the disabled but their care-givers (formal and informal) and families. Dr. Kelley-Gillespie and Dr. Rolf have provided the stepping stones into a matter that will only continue to grow as the population continues to age and life-expectancy increases.

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Average Rating: 5stars  episode 31- review, Wednesday, January 20, 2010

By Laura Nemmer :

I felt this podcast was very interesting and I’m glad to see this topic is being looked into. I was surprised to hear that over seven hundred thousand households have aging parents caring for their disabled children. What really shocked me was hearing that a child is five times more likely to have a disability if both of the parents do. I was wondering if this strictly has to do with genetics or if the environment they are raised in can somehow influence some disabilities. I think this is an important issue to explore, especially if there can be something done to prevent it or promote a more suitable lifestyle for all those involved. I feel one of the bigger aspects of this podcast is generating efficient services and finding effective ways to meet the families’ needs. Especially when dealing with medical care involving the parents hospitalization. It was not specified what the hospitalization was from, but I’m guessing some of it is from caring for the child. For example, if a parent is caring for a child that has an orthopedic disability they most likely are constantly lifting the child. Causing a wear and tear in the parents physically ability over time. I know there is supportive equipment for this, but if a child is disabled enough they are going to need able bodies to lift and transfer them as well. Or perhaps the parents are so focused on meeting their child’s needs that they do not take care of themselves as much as they should be. If this is the case, I believe something should be done in order to reduce medical bills or receive services free of charge. It would be really beneficial to have these families linked with a new or existing insurance plan that takes this into consideration. I hope something can be done in the future to help out these families more.

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