My usual frame of reference and my clinical practice has typically focused on the oldest old – those in the 85+ age cohort. So when I chose a journal article for the most recent Round Table discussion on adult children with intellectual disabilities, my immediate thoughts would have been to have a discussion about the parents who were facing major aging changes and their ability to continue providing care for their intellectually disabled child.
As I prepared for the discussion, I expected that the issues raised in the journal article would be reflected in the conversation. The concerns mentioned were varied and included were parents able to continue providing care to their adult child; did older parents need care themselves and would their adult child be able to provide this; if planning for future care of the child had not been done then worries ensued; and had older parents prepared their child for the losses of death and bereavement.
Instead, the discussion that followed went in a different, but connected direction. It was not the issues faced by the parents that was the focus of the conversation, rather the difficult circumstances around housing and residential care for aging adults with intellectual disabilities. And so, I continually adjusted my thoughts about who was the old person? I thought we would talk about reaching developmental milestones such as separation and individuation when placing your child in residential care after 50 years of living together. I thought we would discuss parents having been decision makers for many years and now giving up this role to others, accepting, yet one more role loss at an advanced age. But the professionals in the room wanted and needed to talk about housing and homelessness for aging adults with intellectual disabilities which is clearly an important and urgent need in the DD community. I had my blinders on, but slowly they were removed and I learned a lot.
Pertinent clinical issues and barriers were discussed including if adult children had never been engaged with social services, problems arise in documenting the need at an advanced age of 40 or 50 or 60. Debating how appropriate it is for a 50 year old to reside in a nursing home or adult family home environment with physically and cognitively frail elders. Cultural issues, too, are difficult to address. In some communities and families, the expectations of remaining in family care is so strong but cannot always be honored when parents are frail themselves. And, finding culturally appropriate residential settings can be hugely challenging.
Adult children with ID are living longer with their families – no longer in institutional care. Their parents are living longer too and are observing their children move into an entirely new phase. Ultimately, my lesson was about the complexities and the “intertwined-ness” of serving these two aging and vulnerable populations. The discussion gave new meaning to intergenerational programming.
The Round Table Discussion Group meets monthly for an interdisciplinary conversation with experienced professionals in the field of aging. Each conversation uses one or two journal articles as reference points. The article read for this discussion was:
- Aging Together: Caring Relations in Families of Adults With Intellectual Disabilities, Jennifer Baumbusch, et al, The Gerontologist, 2017, Vol. 57, No.2, 341-347
- Family Quality of Life and Older Families, Journal of Policy and Practice in Intellectual Disabilities, Volume 3 Number 4 pp 246 – 252 December 2006