The life expectancy of people with I/DD is increasing and approaching that of the general population. Consequently, those with I/DD are aging and will outlive family caregivers, creating uncertainty for future caregiving and housing needs. A knowledge gap exists among health care workers in relation to this vulnerable population as well as a lack of sensitivity to their many physical and psychosocial needs.
Method: Participants signed informed consent following University Institutional Review Board approval. Interpretive phenomenology was utilized in obtaining description and narratives (i.e. data) that focus on the decision making processes and lived experiences of raising an individual with I/DD. Snowball sampling continued until saturation at a dozen families. Qualitative data analysis guided by the work of Max van Manen of transcripts; field notes and peer review were completed and analyzed using MAX QDA software.
Result: Decision making and inclusion of the adult with I/DD varied and multiple strategies were utilized by parents. The majority of adult children represented were over the age of 35, the oldest was 58. Seven of the caregivers were over the age of 66, the youngest parent was 55. Most described a “24/7” responsibility, and related their experiences getting the diagnosis, adjusting to it, and discussed their thoughts for future planning. The following themes were identified: 1) “this is the way it is…” 2) transition = “falling off the cliff”, 3) structuring = worrying about how to “invent” meaningful activity and 4) advocacy = worry for the future and over what you can’t control.
Conclusion: This study identified that advanced care planning is an on-going activity in a person’s life, which is especially critical in developing policies that guide care at the end of life for those with I/DD. Complex decision processes for future and advanced care were identified, as state policies, available resources; medical insurance and inheritance portend a myriad of decision points. Public health care professionals are well positioned for familial support and need to conduct further research studies for these families living in all our communities.